Dementia Caregivers Identify the Issues - Stage 2: Focus Groups

In their own voices:Dementia Caregivers Identify the Issues

Ontario Dementia Caregiver Needs ProjectPrincipal Investigators:Bryan Smale, Ph.D.Sherry L. Dupuis, Ph.D.

Stage 2: The Focus Groups

In Their Own Voices: Dementia Caregivers Identify the Issues

Stage 2: The Focus Groups

Sherry L. Dupuis, Ph.D. Bryan Smale, Ph.D.

Murray Alzheimer Research and Education Program University of Waterloo

© MAREP 2004

Acknowledgements Support was provided for this study from Ontario’s Strategy for Alzheimer Disease and Related Dementias (Initiative #6 – Research on Caregiver Needs), jointly supported by the Ontario Seniors’ Secretariat and the Ministry of Health and Long-Term Care. We would like to thank, for their contributions, Cathy Conway, Associate Director for Education and Administration, Murray Alzheimer Research and Education Programme; Tim Epp, Post-Doctoral Fellow, Murray Alzheimer Research and Education Programme; Lisa Loiselle, Research Associate, Murray Alzheimer Research and Education Programme; and the many graduate research assistants who provided invaluable help at various points throughout the research process: Kyle Whitfield, Sarah James, Jennifer Munro, Fern Delamere, Heather Slade, Peter Morden, Harvey Lemelin, Jessica Luh, Jennifer Gillies, Linda Caissie, Felice Yuen, Christine Buzinde, David Clark, and most especially, Elaine Wiersma.

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Table of Contents Prologue ..................................................................................................................................iii BACKGROUND TO THE RESEARCH STUDY .................................................................. 1 OVERALL STRUCTURE OF THE RESEARCH PROCESS................................................ 2 THE THREE STAGES OF THE RESEARCH PROCESS..................................................... 2 Stage One of the Study: A Profile of Dementia Caregivers in Ontario .......................................................................... 2 Source of Data and Sampling............................................................................................. 4 The Questionnaire .............................................................................................................. 5 Stage Two of the Study: Dementia Caregivers Identify the Issues.................................................................................. 6 Selection of Sites for the Focus Groups............................................................................. 6 Selection of Focus Group Participants............................................................................... 6 Focus Group Procedures .................................................................................................... 8 Stage Three of the Study: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario.... 9 Working Focus Group Participants.................................................................................... 9 The Process ...................................................................................................................... 10

IN THEIR OWN VOICES: DEMENTIA CAREGIVERS IDENTIFY THE ISSUES

WHAT CAREGIVERS, SUPPORTED BY CARE PROVIDERS, SAID............................ 12 Overarching Theme #1: SERVICE DELIVERY/SYSTEMIC ISSUES....................................................................... 13 A. Fragmentation of Services........................................................................................... 13 B. Need-Based, Individualised Services .......................................................................... 17 C. Issues Related to Service Delivery .............................................................................. 23 D. Issues Related to Funding and Stability in the Community Support System.............. 35 Summary of Overarching Theme #1................................................................................ 39 Overarching Theme #2: HUMAN RESOURCE ISSUES ............................................................................................ 41 A. Greater Need for Specialised Services ........................................................................ 41 B. General Need for More Human Resources ................................................................. 42 C. Lack of Consistency in Staff ....................................................................................... 43 D. Better Strategies Needed for the Recruitment and Retention of Trained Volunteers and Front-Line Staff............................................................... 44

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Summary of Overarching Theme #2................................................................................ 46 Overarching Theme #3: PUBLIC AWARENESS AND EDUCATION FOR SERVICE PROVIDERS .................... 47 A. Need for Specialised Training for All Care Providers ............................................... 47 B. Need for Greater Public Awareness of Dementia ....................................................... 54 Summary of Overarching Theme #3................................................................................ 58 Overarching Theme #4: CAREGIVER EMPOWERMENT AND WELL-BEING..................................................... 59 A. Importance of Maintaining Caregiver Health and Well-being ................................... 59 B. Financial Issues ........................................................................................................... 61 C. Education and Support Issues ..................................................................................... 68 Summary of Overarching Theme #4................................................................................ 76 CONCLUDING REMARKS................................................................................................. 78 REFERENCES ...................................................................................................................... 81

List of Tables 1. Summary of Overarching Themes and Sub-Themes..................................................... 79

List of Figures 1. The Research Process ...................................................................................................... 3

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Prologue

Stage Two of the Study: Dementia Caregivers Identify the Issues

This is the second in a series of three reports resulting from the Initiative (#6) of

Ontario’s Strategy for Alzheimer Disease and Related Dementias. Undertaken in partnership with the Alzheimer Society of Ontario, the Ontario Caregivers’ Association, and the Murray Alzheimer Research and Education Program at the University of Waterloo, this research project focused on the needs of caregivers of persons with Alzheimer Disease or a related dementia and community support services in Ontario.

In each report, the three stage research process is described briefly before presenting the results of the stage with which the specific report is concerned. In this document, the issues and concerns identified by caregivers and care providers during 14 focus groups conducted across the province are presented, making extensive use of quotations; that is, the voices of caregivers themselves.

Needs of Caregivers of Persons with Alzheimer Disease or a Related Dementia

and Community Support Services in Ontario

BACKGROUND TO THE RESEARCH STUDY

Approximately nine per cent of all people 65 years of age and older have some form of dementia; in fact, over 364,000 Canadians have been diagnosed with Alzheimer Disease (AD) and related dementias, of which almost 248,000 are women and 116,000 are men (Alzheimer Society of Canada, 2001). With the growing population of older adults, it is estimated that the prevalence of dementia will increase dramatically over the next several years. In fact, according to the Canadian Study of Health and Aging (2000), an estimated 60,150 new cases of dementia emerge each year.

Dementia is also age-related. In Canada, only 2.4 per cent of those aged 65 to 74 have

an illness causing dementia, but this figure rises to 34.5 per cent among those 85 years and older. Given that the fastest growing segment of the population is the oldest old (i.e., those 85 years of age and older), the incidence of dementia is predicted to increase substantially. By the year 2030, three quarters of a million cases of dementia are expected in Canada – an increase of 300 per cent over present figures – while the population will have only increased by an estimated 40 per cent.

Persons with dementia experience devastating consequences over the disease process. The illnesses that cause dementia, however, also have detrimental impacts on the individuals closest to those persons with dementia, especially their caregivers and family members. In fact, caring for a person with dementia can be one of the most difficult, frustrating, and distressing of all caregiving roles. That experience becomes even more distressing as caregivers watch the gradual deterioration and psychological loss of those with the disease. With persons with dementia now surviving an average of nine years, they will require ongoing support either from home or within a long-term care setting.

The Canadian Study of Health and Aging in 1994 suggested that approximately 50%

of persons with dementia in Canada live in the community, with almost all being cared for by family or friends (94%). Coupled with the significant increase in the incidence of dementia, changes in the health care system – despite increased investment in long-term care beds – continue to result, in some cases, in longer waiting lists for certain community support services as well as long-term care beds.1 This means that even more persons with dementia will be cared for in the community, thereby placing an overwhelming practical and emotional strain on caregivers and their families, as well as further taxing an already limited community support services system.2 1 Sanmartin, C., Houle, C., Tremblay, S., & Berthelot, J-M. (2002). Changes in unmet health care needs. Health

Reports, 13(3), 15-21. 2 Parent, K., & Anderson, M. (2001). Home care by default, not by design. CARP’s Report Card on Home Care

in Canada 2001. Toronto: CARP.

In Their Own Voices 2

At present, a comprehensive portrait of caregivers of persons with dementia in Ontario is notably lacking in the research. In particular, their needs and experiences as the demands of their caregiving involvement increases with the progression of the care receiver’s disease are not well understood at all. If caregivers are increasingly expected to maintain their relative at home in the community as long as reasonably possible, then every effort must be made to understand their experiences, articulate their needs for community support services, and enable them to overcome whatever constraints may be present to gaining access to those services. Indeed, learning directly from caregivers about how community support services should be structured, how and when they should be offered, and if new types of services are needed is a necessary first step towards developing appropriate strategies to address their needs. We must be willing to change existing policy and practices, and to develop innovative approaches to the provision of community support services that are truly sustainable, flexible, portable, and responsive to individual caregivers’ needs.

OVERALL STRUCTURE OF THE RESEARCH PROCESS

The research component is the second phase of Initiative 6 of Ontario’s Strategy for Alzheimer Disease and Related Dementias and sought to identify the needs and issues of community-based caregivers who are caring for persons with Alzheimer Disease or a related dementia, and in particular, their use of and perceptions of formal community support services. In the first stage of the research study, a broadly based survey of community-based caregivers across Ontario was undertaken.

In the second stage, a series of focus groups across Ontario with caregivers and care

providers were conducted, which explored the issues and concerns raised by caregivers in the survey in greater detail. Finally, a large working focus group comprised of caregivers, care providers, policy makers, decision-makers, and health professionals was organised with the expressed purpose of developing fundamental principles and specific strategies for change to help overcome the issues and difficulties faced by caregivers in Ontario.

This final stage of the research process provided caregivers, following their review of

the results of the first two stages, an opportunity to indicate in their own voices where priorities for change should be placed. Figure 1 provides a visual overview of the entire research process, the details of which are described in the following sections.

THE THREE STAGES OF THE RESEARCH PROCESS

Stage One of the Study: A Profile of Dementia Caregivers in Ontario

The primary purpose of the first stage of the study was to gather information from caregivers of persons with Alzheimer Disease or a related dementia concerning: (a) the nature of their caregiving careers and the specific activities in which they are engaged; (b) their awareness, use of, and satisfaction with community support services, as well as the constraints

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Dementia Caregivers Identify the Issues 3


they face in accessing them; (c) the impacts of caregiving on them and their families; and (d) what informal resources and capabilities they bring to the demands of caregiving. In particular, this stage of the study provided basic data in the following areas:

1. a comprehensive profile of primary caregivers, including information on demographics of the caregivers and the person with Alzheimer Disease or a related dementia, and characteristics of their relationship;

2. the length and intensity of the caregivers’ careers, including

information on: (a) the types of activities in which the caregivers are engaged in providing support; (b) the duration of the caregivers’ involvement in each of those activities; and (c) the nature and extent to which secondary caregivers provide support;

3. the extent to which the caregivers (a) make use of community support

services, (b) perceive that these services provide help in their caregiving roles, and (c) perceive that the services are accessible to them (i.e., perceived constraints and other barriers) and are matched to their needs;

4. the types and extent of impacts from caregiving on the caregivers

themselves, as well as their families, in terms of their: (a) social context and leisure lifestyle, (b) family life, (c) financial circumstances, (d) working lives, (e) relationship with the person with dementia, and (f) physical and mental health; and

5. the degree of burden that caregivers are under and their abilities to cope

with it, including information on: (a) the demands (i.e., strains, pressures) placed upon them by caregiving, (b) sources and degrees of stress related to caregiving, and (c) types and use of coping capabilities and other resources caregivers draw upon to deal with the demands.

Source of Data and Sampling

The target population for the survey was informal community-based caregivers in Ontario of persons with Alzheimer Disease or a related dementia still living in the community or recently moved to a long-term care facility (i.e., within six months of receiving the questionnaire). Identifying a comprehensive and representative listing of individuals who qualified under this definition presented a challenge due to the lack of an appropriate sampling frame. Therefore, the process by which the sample was selected was based upon the principle of ensuring a representative cross-section of caregivers from across Ontario while adhering as closely as possible to the criteria in the definition of the target population.

The sample for this study was drawn from a variety of sources. At a first level of accessing caregivers, questionnaires were distributed to members and users of services of selected agencies across Ontario. Overall, almost 100 individual agencies around the province


agreed to participate in the study and distributed the questionnaire on our behalf to individual caregivers who qualified according to the definition above. They included:

• the 39 local Chapters of the Alzheimer Society of Ontario;

• the Caregivers’ Association of Ontario; and

• key agencies providing services and programmes to caregivers across

the province, such as Day Away Programmes, Visiting Homemakers, Red Cross, VON, and so on.

In addition, over 60 of the larger long-term care facilities in Ontario were contacted and asked to distribute questionnaires to caregivers who had recently moved the person with dementia in to the facility (i.e., within the last six months when we contacted them). Caregivers contacted in this fashion were asked to reflect on their recent caring activities and experiences while the person with dementia was still living in the community.

Further, the survey was promoted via case managers working with Ontario’s Community Care Access Centres (CCACs) as well as through local media outlets (i.e., newspaper, radio) to solicit participation from caregivers who might not otherwise have been contacted by means of one of the vehicles noted. They were instructed to contact their local Chapter of the Alzheimer Society in order to receive a copy of the questionnaire.

Overall, approximately 11,000 questionnaires were delivered to these agencies and organisations, as well as mailed directly to caregivers who contacted a local Chapter, or hand-delivered by individuals visiting caregivers as part of their responsibilities for an agency (e.g., Visiting Homemakers, VON). The Questionnaire

The questionnaire developed for the survey was designed to gather comprehensive data pertaining to the objectives listed earlier. Whenever possible, existing indicators, scales, and indices were adapted to measure key aspects of the caregivers’ involvement in providing care, their perceptions of those involvements, and the outcomes of their experiences. The questionnaire covers eight categories of information, each reflective of the study’s objectives:

Section A. Caregivers’ and Care Receivers’ Characteristics Section B. Caregiving Activities and Experience Section C. Use of Formal and Informal Support Services Section D. Caregiving Stressors Section E. Impacts of Caregiving Section F. Personal Coping Resources Section G. Caregivers’ Health and Well-Being Section H. Caregivers’ Characteristics

Drafts of the questionnaire were reviewed by the project partners and then pilot tested with several caregivers for understanding, flow, presentation, and relevancy of items. In addition, participants in the pilot tests were asked to provide feedback on overall design and


to comment on the general ease with which respondents would be able to complete the questionnaire. This process helped to refine the questionnaire and while some individuals felt it was lengthy, they all indicated that the information resulting would be extremely valuable. Both French and English versions of the questionnaire were created, and participation was received from individuals in both official languages. Of the 11,000 questionnaires made available, approximately 9,300 of them were estimated to have reached community-based caregivers across Ontario. Of these, a total of 2,244 questionnaires were returned completed and in usable form, representing a 24.1% response rate. This makes the sample derived from the survey stage of the research project one of if not the largest sample of caregivers ever assembled in Canada.

Stage Two of the Study:

Dementia Caregivers Identify the Issues The primary purpose of the second stage of the study was to explore in greater detail the experiences and concerns of both caregivers and care providers associated with the use of and access to community support services. A series of focus groups were conducted around Ontario as a means to gain a deeper and more comprehensive understanding of the issues and needs related to community support services for caregivers of persons with dementia Selection of Sites for the Focus Groups

A total of 14 focus groups (i.e., seven with caregivers and seven with care providers) were conducted across the province. Seven sites for the focus groups were chosen based primarily on the following criteria:

1. to include diverse caregiver and care provider perspectives;

2. to ensure adequate regional coverage from all regions of the province;

3. to include rural, mid-sized, and urban environments; and

4. to include regions where there had been a high response to the survey.

The seven sites chosen included Northern Ontario, Central Ontario, South Central Ontario, South Eastern Ontario, South Western Ontario, a large urban centre, and a predominantly rural region of the province. Two focus groups – one exclusively with caregivers and one exclusively with care providers – were conducted in each region. Selection of Focus Group Participants

The Alzheimer Society chapters located in the regions chosen for the focus groups, in coordination with research assistants involved in the project, were charged with the responsibility for organising the focus groups in their regions. As well as making the local arrangements for the focus groups, the chapters were asked to identify participants that


represented the general characteristics of caregivers and care providers respectively in their communities. The caregiver focus groups included individuals who were:

• primarily caregivers providing care for a person with dementia living in the community; however, a few caregivers who had recently moved the person with dementia into a long-term care facility and were able to speak to the issues related to needed community support services also participated;

• spouses, adult children, other family caregivers, and in some instances

friends providing care for a person with dementia;

• both male and female caregivers;

• caregivers who had not used community support services as well as those who had used such services; and

• caregivers who represented any other features that were characteristic

of that area.

The care provider focus groups included individuals in the community who were currently providing services and/or programmes for persons with dementia. A broad range of care providers participated in the focus groups including:

• representatives from Community Care Access Centres (CCACs) (e.g.,

case managers); • staff working at placement coordination centres; • management staff at day away programmes or other respite

programmes; • coordinators of caregiver support and/or educational programmes; • managers of home health care and/or homemaker services; • managers of other community support programmes such as Meals on

Wheels and Friendly Visitor Programmes; • long-term care policy makers and/or planners in the community; and • other representatives of agencies or organisations specific to a region

who could comment on the issues related to community support services from a provider perspective.

Even though one of the seven sites was selected expressly to include a predominantly

rural population, the chapters in the other six regions were asked, whenever possible, to include caregivers who could discuss issues related to living in the more rural areas of the


region and to the unique challenges that those circumstances created for them in their caring for a person with dementia. Focus Group Procedures

As noted, all 14 focus groups were guided primarily by the issues, needs, and questions identified from the survey results undertaken in the first stage of the project and were designed to gain a deeper and more comprehensive understanding of the issues and needs related to community support services for caregivers of persons with dementia. More specifically, the focus groups centred around the following key questions:

1. Our preliminary results suggest that generally less than half of caregivers are using formal community support services – why do you think this is?

2. Our preliminary findings also suggest that caregivers who are currently

using community support services are quite satisfied with them. However, caregivers who are not using these services feel that they are not at all helpful to them. Why do you think these services are not seen as very helpful to these caregivers?

3. What needs to change with the existing formal community support

services to make them better at meeting the needs of caregivers who are caring for persons with dementia living in the community?

4. Thinking about the whole community support system that is now in

place, what services or other supports are still missing for caregivers who are caring for persons with dementia in the community? In other words, what is currently not offered that should be that would provide better support to caregivers in their caregiving roles?

5. If we could start from scratch and design a whole new approach to

supporting caregivers of persons with dementia living in the community, what do you think this new model of community support for caregivers should look like?

• What programmes, services, and/or supports would be critical

in the new model?

• How would these programmes, services, and/or supports operate?

• What other elements of the model would be important to

include?

• If we were to implement this new model, what aspects of the model would have the highest priority?


These questions provided the backdrop from which caregivers could describe and elaborate on their experiences of caring for a relative or friend with dementia and from which care providers could identify and explain challenges they faced in their attempts to support caregivers in their caregiving roles.

In order to ensure consistency across the focus groups, a trained focus group facilitator and a recorder conducted all of the 14 focus groups. The focus groups lasted, on average, two hours in duration. All focus groups were audio-taped using a multi-microphone, four track Dictaphone machine and were transcribed verbatim. At the end of each focus group, participants were provided with a comment form containing the five questions used to guide the focus group with space in which they could provide additional insights on any or all of the questions discussed. A stamped, self-addressed envelope was provided in which they could then return the form if they chose. This step provided participants with another opportunity to share their experiences and identify other issues, as well as to provide further information that might not have arisen during the focus groups.

The focus groups ranged from 8 to 15 participants, with a total of 68 caregivers and 74 care providers participating at the seven sites. Consequently, a total of 142 participants shared their experiences and contributed their voices to this stage of the research study. In addition, 22 of these participants took the opportunity to return the form distributed at the focus groups and elaborate on their experiences with additional comments.

Stage Three of the Study:

Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario

The primary purpose of the third stage of the study was to develop specific recommendations and strategies for change based on the issues identified by caregivers in the first stage (i.e., the comprehensive, province-wide survey of caregivers of persons with dementia) and elaborated upon in the second stage (i.e., a series of 14 focus groups conducted with caregivers of persons with dementia and care providers in seven different regions across the province).

Rather than attempting to derive recommendations and specific strategies independent of those individuals most affected, this task was turned over to caregivers themselves, thereby giving voice to their ideas and priorities in bringing about change in the way in which community support services are organised and delivered. Indeed, the culmination of the study at this third stage resulted in the participating caregivers, and supported by care providers, offering a number of guiding principles for change along with specific strategies to help bring about that change. Working Focus Group Participants

In September 2002, 20 caregivers and 23 care providers, planners, and policy makers from across Ontario were brought together for a one-day, working focus group meeting. The participants involved in this meeting came from a larger group of individuals nominated by


the 39 Alzheimer Society chapters in Ontario and by key agencies and organisations that provide support and/or are involved in the direct provision of community support and health care services for persons with dementia and their caregivers in Ontario.

The caregivers who were ultimately invited to participate in the working focus group

meeting represented the different regions of the province and many different caregiver characteristics and experiences. The Ontario communities represented by the caregivers were:

• Brampton • Brantford • Burks Falls • Cambridge • Elliott Lake

• Goderich • Kingston • London • Orillia • Ottawa

• Palgrave • Peterborough • Porcupine • Port Dover • St. Catharines

• St. Thomas • Toronto • Val Caron • Waterloo • Whitby

The care providers invited to the working focus group also represented the different

regions of the province and had many different responsibilities for planning, decision-making, policy development, and direct provision of support services to caregivers. The organisations represented at the working focus group included:

• Ontario District Health Councils • Community Care Access Centres (CCACs) • Psychogeriatric resources consultants and physicians • Ontario Home Health Care Providers Association • Ontario Community Support Association • Ontario Long-Term Care Association • Ontario Association of Non-Profit Homes and Services for Seniors • Ontario Hospital Association • The Caregiver Network • Caregivers’ Association of Ontario • Ministry of Health and Long-Term Care • Ontario Seniors’ Secretariat • Ontario Coalition for Senior Citizens’ Organisations • Council on Aging • CARP – Canadians’ Association for the FiftyPlus

The Process

In preparation for the working focus group meeting, participants were sent three documents providing background on the earlier stages of the research initiative of Ontario’s Strategy for Alzheimer Disease and Related Dementias. The first document was a summary of the most salient points arising from a comprehensive review of the literature on caregiving roles and experiences. This literature review provided the context upon which the research project was based. The second document provided participants with a brief overview of the research project as well as selected results from the survey of caregivers of persons with dementia completed in the first stage of the project. This document included a profile of caregivers of persons with Alzheimer Disease or a related dementia and the types of caregiving activities in which they engage, as well as the community support services they use and their perceptions of these services. The third and final document provided the participants


with a summary of the key themes and issues related to formal support for caregivers that were identified in the 14 focus groups conducted in phase two of the project. These themes were the primary focus of the working focus group meeting and centred around:

1. the need for new or additional services,

2. limitations of current service provision,

3. alternative approaches to service provision,

4. increased education and awareness, and

5. caregiver well-being and support.

Working in five smaller groups of eight or nine individuals organised around these

initial t

A 21-page summary outlining the specific recommendations and strategies identified by each

hemes and with a trained facilitator and recorder, caregivers of persons with dementia, supported by the care providers, planners, and policy makers, identified a number of recommendations and strategies for change they felt needed to be implemented in order to meet the needs of all persons with dementia and their caregivers. The ultimate goal of these recommendations and strategies was to ensure that all persons with dementia and their caregivers had the supports necessary to maintain quality of life throughout the progression of the disease.

of the five smaller working groups was prepared directly following the meeting and mailed to all the individuals who had participated in the working focus group meeting. They were asked to respond not only to the recommendations and strategies developed by their own group, but also to those developed by the other four working groups and to provide any further feedback or suggestions they felt were necessary to ensure the document accurately reflected the issues and solutions identified by caregivers. Those participants who did not return feedback within three weeks of receiving the summary were contacted by telephone to ensure they had received the document and to obtain any additional feedback or suggestions those participants might have. A total of 29 participants returned the summary document with their comments, which almost universally verified the accuracy and comprehensiveness of the working focus group outcomes.


IN THEIR OWN VOICES:

DEMENTIA CAREGIVERS IDENTIFY THE ISSUES

WHAT CAREGIVERS, SUPPORTED BY CARE PROVIDERS, SAID

Four overarching themes consistent among caregivers and care providers emerged from the analysis of the data. The overarching themes centred around:

o Service Delivery/Systemic Issues

o Human Resource Issues

o Public Awareness and Education for Service Providers

o Caregiver Empowerment and Well-Being

Each of the themes and sub-themes emphasised by the focus group participants are described in the remainder of this document primarily through the words of the caregivers, and supported by care providers. That is, in order to respect and highlight the “voices” of caregivers and those providing formal support for caregivers and persons with dementia, we make use of extensive quotations selected from the focus group transcripts. This allows the caregivers and care providers to describe and interpret their own situations and experiences – essentially, to speak for themselves.

The quotations that appear on the following pages have been drawn from the

transcripts of the 14 focus groups conducted across Ontario and are intended to be exemplary rather than exhaustive of the issues and concerns identified by caregivers and care providers. A brief description of the speaker is provided in parentheses at the end of single quotations and when a discussion among participants is presented, the quotations appear as a block and the speakers are described at the beginning.


Overarching Theme #1:

SERVICE DELIVERY/SYSTEMIC ISSUES

A number of issues specific to the community support and health care service system as a whole and service delivery more specifically were identified in the focus groups. These issues generally reflected four sub-themes: fragmentation of services; need-based, individualised services; issues related to service delivery; and issues related to funding and stability in the community support system. A. Fragmentation of Services 1. Need for interagency sharing/working together

Both caregivers and care providers emphasised the current lack of sharing of information and resources and the lack of time for sharing of information among service providers. In order for the community support and health care service system to respond adequately to the needs of persons with dementia and their caregivers, it was felt that all agencies and organisations working with persons with dementia and their caregivers needed to find more effective ways to work together and share information. There was a general sense that care providers are not sufficiently familiar with what other care providers are doing.

Caregivers and care providers also talked about the problems with the current referral

process related to the lack of interagency sharing. One of the primary concerns of participants was the lack of referrals between services and lack of doctor referrals to services. Participants emphasised the need for a common referral process and that persons with dementia and their caregivers needed to be referred to services as early as possible in the process.

It would be nice to have where as soon as someone was diagnosed okay there was like a, I don’t know, a data base or something that someone is new okay let’s keep track of this person so that the doctors would notify someone and then [that person] would notify the other support groups and they would contact the person [the caregiver] just that it’s there available for everyone. (Daughter-in-law caring for mother-in-law with AD, South Western Ontario) (Health Care Professional, Central Ontario) – I think that what you said, the

physician has a key role here [in] diagnosis and referral, that’s it. And then … we should all know each other, we should all support each other, a network…

(Another Health Care Professional, Central Ontario) – Yeah, an awareness, I know a lot of things, like people, there’s a lot of services being provided and I know everyone’s trying to make people [other care providers] aware of them but it’s just not getting through.


I think that one of our biggest points is the whole referral process between services needs to be better. The awareness needs to, somehow we need to get that awareness out there…to the caregiver about the services and the services need to know about the other services. We need time to go research each other. (Health Care Professional, South Western Ontario) [We need to meet them] in the early stage. The Alzheimer Society meets them in the middle, [which is] too late when they’re in panic or crisis. It would be nice to meet them earlier. And, that’s what the medical profession has to do with referrals. When they give an early diagnosis wouldn’t it be lovely if we had one and then they would never let the patient walk out. They hand them some information, there’s the sort of services [available], contact the Alzheimer Society, they’ll put you in touch with them. (Health Care Professional, Central Ontario) The GP is the person that the [caregiver] will go to, where they will start, and what we’re finding is they’re the first step but that [GP] never bothers, for whatever reason, to link them up with all the next steps. (Health Care Professional, Large Urban)

Also related to the lack of sharing of information and working together, caregivers and

care providers talked about the lack of a common assessment tool and the lack of sharing of assessment information. This often resulted in caregivers and persons with dementia having to provide the same information over and over again, and experiencing much frustration when important information was not shared with those who needed it.

I don’t use very many formal services and if it would be something like you need a nurse come in, well we have a doctor around the corner. I go to him first because you have to get my mom’s doctor to give [a referral]. If you want home care like you have to go through a big rigmarole … they have to do a [formal] assessment and they’re always coming to do assessments. To start all over again because you need just a nurse to come and let’s say check the lungs or something … I just find there’s a lot of, you just want something quick and they make you have to go in some occasions and get an assessment and …the doctor has to phone the home care or Community Care Access thing and then request this and that, and forget it I don’t have the time. (Daughter caring for mother with AD, Large Urban) The fact that may have people resisting [services] is the rehashing over of information of my loved one. I would go to CCAC and … to do all of this history, I go to somebody else and they do it all again. And there’s a lack of sharing of information. … They go nuts just having to repeat it and repeat and repeat it. And, so there has to be a better streamlined system. (Health Care Professional, South Central Ontario) Just the sharing of information so that they’re not having to repeat the same thing over again. So have sort of access to shared files almost. There’s your ideal, ideal situation…Just the basic information that we all need that we all


share so that any time that’s spent with them is doing something that’s specific to your service and not just getting where were they diagnosed, and what problems are you having and so on. It’s all being repeated three or four times. (Health Care Professional, South Eastern Ontario)

Caregivers and care providers generally agreed that there was a need for better

communication between all support services and between support services and physicians.

What I’m hearing and what I feel myself is accessibility is the problem. How do you access what services there are? …It’s almost too excessive. Can there be any liaison between the doctor and the services that is to say my aunt goes to her family doctor or GP or whatever you call him or her and that professional says she has Alzheimer’s. Can Community Care access that information immediately or can that information be immediately fed into what have you, an information bank that when I call Community Care and say look my aunt so and so, they can press a button and say ‘yes, we see it there and we know what needs to be done’. (Niece caring for aunt with AD, Large Urban) A better communications system between the different services and even inside the same service is needed. (Wife caring for husband with dementia, Central Ontario) I think what is really important and still very much missing is the technology to share the communication. Our electronic systems are all different. We can’t, there’s consent form issues, we can’t just, you know, I can’t send [so and so] a charge form for my client because, well maybe we can with some but with other services we cannot. To share that communication component which would make it a lot easier and the same for the hospital centre so we know what’s going on with the client and what needs to be done and communications is integrated and shared fast. (Health Planner, South Eastern Ontario)

2. Need for a “one-stop” service system reflecting a continuum of care for easier access to

services throughout the progression of the disease

Caregivers also described the difficulties they experience in trying to navigate the current community support and health care system throughout the caregiving career, as well as the frustrations they feel in having to navigate through a number of different agencies and programmes in order to access needed services and resources. Caregivers and care providers generally felt that there was a need for a “one-stop” service system where caregivers and persons with dementia could access all services throughout the caregiving career. Although there was some disagreement on whether or not all services had to be under one roof, the general consensus was that one access point for all services was crucial to better meet the needs of caregivers.

The caregiver [needs] one place, one-stop shopping, because we don’t have enough time to go around and find all of this. We need to be able to go into


this office and say, “This is my problem, who should I go to?” And we don’t have that. (Daughter caring for mother and father, both with dementia, South Central Ontario) (Adult daughter caring for mother with dementia, Large Urban) – We need a

greater localization of service and those that understand the local scene. And the CCACs again are not filling this need. They can list the agencies for you, they can tell you [who] to call, you’re the one still who has to call, navigate the whole system, find out who really offers what etc. etc., endless. And, I think it makes far more sense to me and would not duplicate service provision to have more localized services who don’t all compete with one another, who share their territory.

(Another adult daughter caring for mother with AD, Large Urban) – like one-stop shopping.

You need a formalised continuum of care and we need an access point where the person is properly assessed in that continuum of care and properly channelled whether it means resources in the home, respite resources, long-term care, home care support. It seems as though we don’t have a proper continuum that clearly identifies what the person needs and wants, almost an access point, very similar to our placement co-ordination centre for long-term care. We have one access point whereby the person is properly assessed, the information is gathered and it is shared to various people along the continuum whatever that person should get. And, it just seems as though all of these points very much reflect that lack of a continuum or lack of formalised continuum of care for the person suffering with dementia. (Health Care Professional, South Eastern Ontario)

So those linkages between the formal services are very important in terms of different services knowing what the other services do. It’s kind of like the one-stop access notion. You know, if someone contacts you, do you kind of give them a bit of information and let them go and you’re never sure exactly what happened to them or do you try to find, be responsive and try to find the most appropriate service and link them directly, acting as the navigator of the system. And, the more each service knows about each other and the people know about each other the more integrated it is, the better off it seems to be for hooking people up. (Health Care Professional, Rural Ontario)

3. Limitations of service provision by geographic boundary

The fragmentation of services was also reflected in the observations made by both caregivers and care providers concerning inequities they perceived in the availability of and access to services across the province and between urban and rural communities. Caregivers and care providers emphasised that needed services should be available to all caregivers in Ontario regardless of geographic location.


(Son caring for mother with AD, South Eastern Ontario) – In the city you can phone a bus service and they’ll come to your home and take you to the doctor. But out in the country we don’t have anything.

(Wife caring for husband with early onset dementia, South Eastern Ontario) – There’s no services for us out there.

Well, there’s also inconsistency from community to community in terms of what’s available…some communities have very minimal services and so it’s not just engaging in what’s already there but it’s just not there…Because the further you get from Sault Ste. Marie, if you’re still in Algoma, you don’t have access to those services maybe, even though we have the services here, they can’t even access some of what we have here or if they can they’ve got to travel and that’s a long distance for some of them. (Health Planner, Northern Ontario)

(Husband caring for wife with AD, Rural Ontario) – No, I wish they would

have had them [early stage support groups] in place when I was [caring for my wife] at that stage it would have been a great assistance to my wife and myself. And, if they are starting now that’s great but I think they should be pursued that they’re happening everywhere.

(Daughter caring for father with AD, Rural Ontario) – It should. There should have been more throughout Grey and Bruce because if you consider that we cover all the way down to Lucknow and all the way down to Dundock and the distance was too great I think for a lot of people to bring their Alzheimer patient to Owen Sound for one central group. And, I think that maybe if they would have had one down in Hanover, had one in south Grey it might have made it easier.

(Daughter caring for mother with AD, Rural Ontario) – I think as she says we need these services in different areas, not just in Owen Sound. Not everybody lives in Owen Sound, I don’t.

B. Need-Based, Individualised Services 1. Need services responsive to or based on specific and changing needs of caregivers and

persons with dementia throughout the disease process (not services based on programmes available/allowed)

One of the common issues raised by caregivers and supported by care providers was

the inability of the current system to respond to the unique, individualised, and ever-changing needs of caregivers and persons with dementia. It was felt that the timing of services often does not match the need for services (i.e., long waiting lists for some services makes it difficult for caregivers to access services when needed, services often needed when not available such as at night and on weekends). Caregivers and care providers also identified a number of limitations of the current system which make it difficult for the system to meet the individualised needs of persons with dementia and their caregivers. Participants in the focus groups emphasised that limitations to: (a) current policies and regulations on eligibility criteria, (b) the amount and type of service allowed, and (c) what volunteers and home support


workers are allowed to do, all make it difficult to meet the unique and changing needs of caregivers and persons with dementia. There was a call by caregivers and care providers for more flexible services and programmes.

There [are] a lot of different dementias. You know, we’re not dealing with the same people. Each one is so individualised and what programme will work for one isn’t applicable for the next person…I am to a point where I never ever thought, never dreamed I would ever be in. And that’s the difference and that’s what’s wrong with these programmes is again, it’s this one sheet of paper that says this must fit everyone, And it doesn’t. They need to look at everything. (Wife caring for husband with dementia, South Central Ontario) The support that you get is not adequate enough for the needs of the client. I found that out and I just cancelled it…And it [response time] can’t be like forty-eight hours thing, it’s gotta be almost immediate … Because the situation can change, they change. They can be fine today and tomorrow they can be violent. And when they’re violent you need help immediately. You don’t want to have to say, “Oh my God, where are they going to keep him for twenty-four hours until they get a bed.” (Wife caring for husband with early onset dementia, South Eastern Ontario) I want somebody to come in the morning and change her and give her a bath. And, I want somebody to come in at one o’clock and change her. And, I want somebody to come in at six and change her because she can urinate herself. She’ll go to the bathroom but, I’m her son and I do not go into the bathroom with my mother. So, we keep two or three diapers on her at a time. You do that, she gets a rash. I phoned for a nurse to come and put some stuff on her, [they said] “no, take her to the doctor, take her to the doctor”. [Although] the home care worker comes in the morning, I [have to] give her the salve. [The worker says], “I’m not allowed to put the salve on her”. This is insanity you know. (Son caring for mother with AD, South Eastern Ontario) Yes, in my particular case the spouse was working full-time and was not ever home and two hours a week was just not sufficient you know. She [the person with dementia] was unable to do laundry, organise her clothes, get herself something to eat and she was left really by herself except when I was able to be there. And I tried to get more hours and they said, “Oh no, there’s people so much more worse off”. (Close friend caring for person with AD, Rural Ontario) This is what I find so frustrating. You know, as long as you stand within the guidelines and the four little hours and not ask for [more], I’m in a mess here and I need somebody for twelve hours, “Oh, that can’t possibly, you have to find somebody else”. Well who am I going to find…I just find it very frustrating. (Daughter caring for mother with dementia, Rural Ontario) I also find [that] it all has to happen during the day. Like I said, I work. My dad refused to accept that my mother has Alzheimer’s so I have sort of two


people to deal with and I cannot deal with that during the day. There is no one in the office so I gotta be there. I’m being pulled in all directions. (Daughter caring for mother with AD, Large Urban)

Formal community support services, they’re pretty limited in what they can do. Um, you know, they say it’s not there 24/7, it’s just to, you know, support. Like the Province of Ontario says that a person just needs a bath once a week. That’s the current thing and that’s all you can get help for. And, that bath has to be within an hour. Well if someone’s coming into your home and the person is confused anyways and they’re going to give them a bath and do everything in an hour. I mean sometimes it’s just not worth all the upheaval to have that happen. (Daughter caring for mother with AD, Northern Ontario)

I think there needs to be a recognition that with this illness it’s a deteriorating illness and there are going to be increasing need requirements as things change. And that needs to be built into the system so that as this client deteriorates or when there’s a crisis or there’s something that happens that we can bring in whatever support is needed at that time and that it’s not an hour or it’s not three hours, it’s based on the need. (Health Care Professional, Large Urban) The timeliness of the care that is provided if you’re lucky enough to become approved for in-home support respite care. Often the agency is offering you hours that fit into their schedule, their workers’ schedule and it doesn’t make sense for a respite break for the caregiver. It doesn’t make sense in terms of when the bath should be taken, when the person’s more than likely to co-operate with it. So that it’s like why bother? You know I go back to why do you think they’re refusing you? You know what could make it better? Start with what the need is. Who knows the need best? The caregiver. (Health Care Professional, Large Urban)

Listen to what the caregiver actually wants. In many cases what they want maybe is the housekeeping or whatever so then they can spend that quality time with their spouse and here we are with a nice neat little package of, “We can give respite to your spouse’ but that maybe isn’t what they want, they want the other. So why can’t we give what they want? And develop the services that the caregiver actually needs. (Health Care Professional, South Eastern Ontario)

2. Need for more continual monitoring, follow-up assessments, and evaluation of efficacy

and appropriateness of services for both caregivers and persons with dementia beginning early in the disease process and throughout the progression of the disease

In order to more effectively match services and programmes to “need” and to meet the

individualised and changing needs of persons with dementia and their caregivers over the progression of the disease, caregivers and care providers felt that there was a critical need for early assessment, treatment, and support as well as the need for continual follow-up and


reassessment of both persons with dementia and their caregivers throughout the disease process. Yet, there was also considerable frustration expressed related to the limited time currently available to do follow-ups, continual assessments, and evaluation of services despite the fact that the needs of caregivers change as the disease progresses.

I think we need a multi-dimensional diagnosis. We need the family doctor to do this and then pass them on to … somebody in the field … And the neurologist then would send you on to the advocate’s office who would now look at your situation and deem what you need or help you find out what you need. Because it does change. What I needed five years ago I don’t necessarily need today. And, five years down the road God only know what I’m gonna need. (Wife caring for husband with dementia, South Central Ontario)

It would be nice in a community of this size where there are so many people out in rural areas that that service could come to your home on a regular basis so they can monitor how severe or how quickly the patient, or excuse me, the Alzheimer person, is deteriorating. Like I know that it can happen one day they can’t button up their shirt. It could be a month, it could be six months before they can’t dress themselves at all. … You never know which way, how far, how fast the disease is gonna move. And, I don’t think that the caseworkers can, they just don’t have the time to get to you. Like I don’t think they can get to you. I mean they can phone you, but they can never really see for themselves or actually do small little tests that the geriatric clinic does, when they come to your home they do assessment tests on the patient. They could come on a more regular basis to your home and say how are you doing? How are they doing? What are they doing different? You know, just go through a questionnaire so that they can sort of determine how and how far the Alzheimer’s patient has gone…I mean for our community, the majority of the people are out in rural areas so it would be nice if somebody came to visit [the caregiver] like once a month just to see how things are going with her husband and do an assessment, a small, quick assessment, maybe half an hour or fifteen minutes just to make sure that they’re doing okay between the two of them. (Daughter caring for father with dementia, Rural Ontario)

That’s my point of assessment. It’s not preliminary. There’s got to be continual assessment all the way through. (Husband caring for wife with Pick’s Disease, Large Urban) … the flexibility for frequent reassessment and evaluation because often we start with a well thought multi-input plan but knowing the disease process and how things change there needs to be, in addition to the one access, there needs to be re-evaluation and reassessment along the need continuum. (Health Care Professional, South Eastern Ontario)


3. Need for one contact person within the community support system

There was a perception among caregivers and care providers that the needs of caregivers and persons with dementia would be better met if caregivers had one person they could contact when in need of services and resources.

I [would like] a person that could … make visits maybe once a month or once every two months to a family that has an Alzheimer patient. I think probably that way you would be more open to someone that you knew and more apt to tell them that you do need care… Like for me to phone up, I feel like I’m really bothering people. (Spouse caring for husband with AD, South Western Ontario) It’s very overwhelming to be here and meet this many people from different groups and I know it’s extremely overwhelming for not just the client but the caregiver to meet all kinds of people. Case managers do a great job as far as getting the services reporting but still the client meets all kinds of [people]. [I] just met with somebody yesterday that was just totally over the edge … it could be one person [from] the Alzheimer Society, Red Cross or wherever but if we could in the ideal world find a worker who has a good relationship with that client to be a liaison with the other groups. Because everyone comes in with forms and different voices and different styles and it’s very overwhelming for them [the caregiver]. (Health Care Professional, South Eastern Ontario)

For me it’s that one person over the long term that’s responsive to the family…that can bring in the supports as needed, can support that family. I stayed in three, four, five years. Sometimes it’s once a month, sometimes it’s twice a month, sometimes I have to go in weekly. The doctor changes the meds, things go crazy. You get on the phone to the doctor and say look you changed the meds you’ve got to do something because now he’s not manageable. And that happens. You help the family apply for respite if that’s what they need at that particular time. Initially I go and the families refuse everything. And it takes me time to get them to start accepting. But it’s that long term consistent intervention, knowing that things are going to change but the family knows they have one person. And as I said often it’s not intensive, it doesn’t have to be. It needs to be intensive when it needs to be intensive and it needs to be less so when things are quiet. And we know that … it’s constant ups and downs. And if they need the day programme then I do the referral to the day programme. To me that’s the ideal for these families. You stay in over the long term until they’re placed, until they die but the family knows that you’ve got one person. (Health Care Professional, Large Urban)

4. Lack of diversity of services cognizant of language and cultural issues/needs, or that

reflect a preference for same gender care, or that takes into consideration the age of the persons with dementia


In relation to the inability of the current system to meet the individualised needs of persons with dementia and their caregivers, participants identified the lack of services that are able to address the diverse needs of caregivers and persons with dementia. The types of services named by caregivers that were needed included: (a) services that are sensitive to language and cultural preferences and issues, (b) services that respect the preferences of some caregivers and persons with dementia for same sex care providers, and (c) a range of services to meet the needs of younger persons with dementia.

I’m thinking of day programmes. They’re all in English unless we have a staff member who speaks some other language. (Health Care Professional, South Western Ontario) I think I’m kind of looking at this in terms of the cultural groups that are here as well. Sometimes the challenge is to find people within their own cultural group that will be able to provide services, speaking the same language. Often some caregivers I find are preferring a more mature caregiver or homemaker that can sort of relate to where they’re coming from in terms of their beliefs and values and culture and so they’re feeling uncomfortable with someone who’s maybe much younger. Say well, “This person could be my grandchild and here they are having to help me with these things and I’m having a hard time dealing with that.” So just some of those things in terms of providing caregivers, the clients, [with someone they] will be able to feel comfortable with is a big one. (Health Care Professional, Northern Ontario)

Well I think when I first started to have the young man come and spend time with my husband it was in early last spring and then all of a sudden he said, “I’m not coming any more because the government has cut back and I’m the low man on the totem pole as it were and they’ve let me go.” And I said, “You’re making a joke” and he says, “No, that’s … true.” So that was the end of that so of course they called and they said, “Well we have other people, we can send you a lady.” I said, “No I don’t want a lady.” And so they said, “Well we can’t help you with that right now” … And I said, “When you get men on your schedule then call again.” (Wife caring for husband with AD, Northern Ontario) I often hear clients say they don’t want home care services because of gender, because many may want a male companion or a male respite worker rather than a female, and predominantly it’s females in that field. (Health Care Professional, Northern Ontario) (Wife caring for husband with Pick’s Disease, Rural Ontario) – What do you

do with a person who is in my case forty-nine years old? He’s physically fit. A social worker keeps telling me that I need to put him in a nursing home for respite. It would break my heart. I visited two of them in the past couple of weeks and the median age is 88 years old. How can I put him in a locked unit, [with] all these old people drugged up sitting in chairs…where can he go?


(Daughter caring for father with AD, Rural Ontario) – …[we need] services for a younger age.

Here in our community we have the geriatric outreach services which would come in and co-ordinate drugs and doctors and all of this kind of stuff. We never ever could get that. He was too young, he still is too young. I think next year he qualifies …. I have no idea if they would even look at him. We waited nine months to get a referral to be seen by them and they called us the day before and said your husband’s too young. (Wife caring for husband with early onset dementia, South Central Ontario) I think another thing we see missing is people with dementia who are early age, so not seniors … There’s nothing for them specifically. No place to live, no place to go … Different types of recreation, everything is different when they’re young. There’s nothing. (Health Care Professional, South Western Ontario)

C. Issues Related to Service Delivery 1. Respite and programmatic issues

Caregivers and care providers identified a number of issues specifically related to respite services. Respite programmes were highlighted as an essential service for caregivers, however, participants felt a number of changes were needed to respite services in order to better meet the needs of caregivers and persons with dementia. They also described the need for alternative approaches to respite care. The most common issues identified by caregivers and care providers specific to respite services included the following:

a. the preference among caregivers for in-home respite and the need

for more hours of in-home respite (e.g., higher maximum number of hours needed) for longer periods of time (e.g., 24-hour, in-home respite, weekend in-home care, one or two weeks of in-home respite when needed);

b. the need for easily accessible and immediate emergency respite

services in crisis situations;

c. the need for alternative and more flexible respite options, such as night respite (e.g., night away programmes) so caregivers can get a good night’s sleep, short-term respite that would not have to be arranged in advance (e.g., community respite drop-in centre if the caregiver has to run some errands), and supportive environments and programmes designed for both caregivers and persons with dementia (e.g., camp/programmes for persons with dementia and their caregivers);


d. the need for meaningful respite programmes for persons with dementia (e.g., one-on-one social/recreational respite programmes that match the needs/interests of persons with dementia); and

e. the need for respite and other programmes geared to meet the needs

of persons with early onset dementia and in early stages of the disease (e.g., appropriate day away programmes).

Each of these is treated in turn below. a. The preference among caregivers for in-home respite and the need for more hours of in-

home respite (e.g., higher maximum number of hours needed) for longer periods of time (e.g., 24-hour, in-home respite, weekend in-home care, one or two weeks of in-home respite when needed)

(Wife caring for husband with AD, Rural Ontario) – I really do think it would

be nice if you could get away for a week or two and have somebody in the house. I did get a week away but my husband found the abrupt change into the nursing home very difficult. So I think if they could just somehow give time where somebody could come in and stay in the home it would be a lot better.

(Daughter caring for father with dementia, Rural Ontario) – I think just sort of to elaborate on that point with Respite, Respite isn’t that easy to get into either. They [the person with dementia] don’t want to leave their environment or where they are. And I think when you have a person who’s not in later stages and they want to be in their home and they don’t want to go anywhere else in order to leave, you have to have Respite that has to be in your home. That can be, like you said, hard to get. They won’t come twenty-four, I tried, I went through the whole thing of trying to get [it] – twenty-four hour care is expensive.

(Daughter caring for mother with dementia, Rural Ontario) – Like they won’t even come twelve hours consecutively.

(Same daughter caring for father with dementia, Rural Ontario) – And not to mention trying to get private care. Private care is very expensive as well.

(Same daughter caring for mother with dementia, Rural Ontario) – And I mean you’re not asking for that every week or every month but there’s times when an emergency comes up and you don’t have any neighbours. I wouldn’t be asking for help if I had neighbours. You know, it can’t always be somebody else’s responsibility, you know this is what you are supposed to be doing … This is what I find so frustrating. You know as long as you stand within the guidelines and the four little hours and not, but just ask for more … I’m in a mess here and I need somebody for twelve hours oh that can’t possibly you know you have to find somebody else. Well who am I going to find? … I just find it very frustrating.


(Daughter caring for mother with dementia, Central Ontario) – I would like that [respite] to be in a home. I know you can take them to nursing homes. …I always found that mom was very aggressive in the [nursing] homes.

(Wife caring for husband with dementia, Central Ontario) – It takes a month to get them back to normal after one week [in a nursing home].

(Same daughter caring for mother with dementia, Central Ontario) – Yes, I did too.

(Same wife caring for husband with dementia, Central Ontario) – I’m glad I’m not the only one. I thought it was me. But you do need respite once in a blue moon… Well my thought is the respite, if you could bring the people to the house to look after the patient and then you take off you see. That’s my feeling on it rather than take them to a nursing home.

(Son caring for mother, father, and mother-in-law, all with dementia, Northern

Ontario) – I think periodically that … the caregiver needs to go away or has to go away for a weekend for two or three days. And, in a perfect world that care would be in-home.

(Another caregiver, Northern Ontario) – Yeah I think we all agree on that one. We do have respite opportunities but … we could improve them by making them longer term. Either for longer periods in the day and even overnight and extending it to longer period days, weeks sort of thing, in-home. (Health Care Professional, South Eastern Ontario) There’s also the notion of in-home respite for blocks of time because sometimes people are at a stage of dementia that it’s hard to believe that their caregivers are still caring for them at home and a change of environment everyday every twenty-four hours would just be impossible you know, so that in-home respite not just for an hour or two but for a weekend or a week [is needed]. (Health Care Professional, Rural Ontario)

b. Need for easily accessible and immediate emergency respite services in crisis situations

(Wife caring for husband with AD, South Western Ontario) – I know one thing we need is the emergency [respite]. Like when I got sick I had nobody there. What do I do? I thought I was having a heart attack. I took an aspirin, said go to bed, if you’re alive in the morning, you’re alive in the morning you know. (laughs) … Even a nurse to say look I’ve got this, what do I do with [my person with dementia].

(Wife caring for husband with frontal temporal dementia, South Western Ontario) – Caregivers can’t get sick. We don’t have a hope.

And there can’t be a waiting list either, can’t be a waiting list. Because when you think about it a person who’s under a lot of stress dealing with Alzheimer’s, your breaking point you push yourself as far as you can. And when that breaking point comes you really don’t have a life. So we need a way


that we can know that if something happens our loved one has care immediately. (Wife caring for husband with early onset AD, South Eastern Ontario) Well my husband was so aggressive … it became very difficult to control him and in fact the only thing I could do at one point was let him go out the door and call the police. But even at that point they were going to take him to, well they did take him to the hospital and they were going to release him back to me within a few hours because he had calmed down. And I knew that this just was not going to be the case. You know he was calm for a short period of time. My husband was a police officer and I think maybe seeing the policemen and the uniform was the calming effect and I knew once he left that hospital it would be all hell breaks loose again … I finally did convince them to keep him overnight, and in fact that’s exactly what happened … through the night he just destroyed the hospital room and they put him in a straight jacket. So that particular day I could see this building and I had made three different calls to hospitals etc. and couldn’t get him in anywhere. So you need some kind of emergency backup. (Wife caring for husband with AD, Northern Ontario)

c. Need for alternative and more flexible respite options, such as night respite (e.g., night

away programmes) so caregivers can get a good night’s sleep, short-term respite that would not have to be arranged in advance (e.g., community respite drop-in centre if the caregiver has to run some errands), and supportive environments/programmes designed for both caregivers and persons with dementia (e.g., camp/programmes for persons with dementia and their caregivers)

And another thing that certainly would be very helpful if we could have someone come and sit with him part of the night so I could get some sleep … I feel that there should be some night support. (Wife caring for husband with AD, South Western Ontario) (Wife caring for husband with Lewy Body Dementia, Northern Ontario) – If

my husband could still walk there’s no way he’d be able to be at home because he was violent and now he’s nice, he’s quiet (chuckles) … But I mean now he’s, I can handle him … Before I couldn’t. I mean, he wasn’t in the home, but he was in hospitals and but that would be something too like she said, an emergency service. At the beginning when they first start to wander and they first start to get violent, I used to just pray that there was a hotel or something you could take them to just so you could sleep one night. And there is no place you can take them …

(Daughter caring for mother with dementia, Northern Ontario) – You know to follow-up on that just kind of gave me an idea. They have sort of like hostels for young people. Maybe they should have like a hostel for the older people. So that you can take them there for a night or two nights.


I think that one of the things that ultimately drives caregivers to put their loved one into a long-term facility, other than incontinence, is the person with dementia being up at night wandering and so therefore the caregiver doesn’t get rest and sleep and burns out. I think support for the nights to allow the caregiver to get adequate sleep, there needs to be something. Whether it be increased respite hours available for people at night, or and I know this was explored once, … sort of a Night Away Programme rather than Day Away. (Health Care Professional, Northern Ontario) The programmes typically start at 8:30 conclude at 4:30 with some options for Saturday programming and Sunday. But to really meet the needs of caregivers I think we need to provide more options for people who have to start work earlier, who finish work later, who perhaps would benefit from evening respite or overnight. (Health Care Professional, South Central Ontario)

[E]ach community would have a drop-in centre where there would be some people with specialised training and you could just drop hubby off because you’ve gone to have lunch or just something on the spur of the moment. You don’t have to make five phone calls. Wouldn’t it be nice if there was a drop-in centre in each town? … Short-term, I think just go in there for an hour and a half, two hours. Not a full day … [for the full day you would use the] day programme. We have drop-in centres for high school kids. (Health Care Professional, Central Ontario) How about a summer resort place where you don’t put the person in respite care, you take your loved one with you and there’s facilities there to watch them or whatever but while you’re there, your [loved one] is there too kind of thing. A summer resort. (Daughter caring for mother with early onset dementia, Large Urban)

d. Need for meaningful programmes for persons with dementia (e.g., one-on-one

social/recreational respite programmes that match the needs/interests of persons with dementia)

You have a home care worker come in for three hours at … $15 an hour and she doesn’t do anything except take him for a walk and watch T.V. with him and watch him eat his dinner. Now you tell me where the sense is in that…I need respite. He needs care. He needs care that’s going to help him stay good longer not just medication. He needs the activities. And in my situation I can’t be doing it twenty-four hours a day because I’ve got three young people and a grandchild in the house that I’m looking after too. So he needs the care that not only I can’t provide for him but he needs, I need care too. (Wife caring for husband with early onset AD, South Eastern Ontario) I think support in the hands-on types of activities within the home. Just like they have in their Day Away Programme. But a lot of them still have different interests and functions and if you could just tap that so that they could build on


what they have but do it in-home again. And then it could continue when the person who’s doing that leaves and they can continue and transfer it to you know to other day’s activities or interests or development of in-house things. I mean they can’t garden outside so maybe have a house garden and kind of going with where the person’s at. (Health Care Professional, South Eastern Ontario). [We need] some paraprofessionals as well. People there to engage people in a broader spectrum [of activities], not just related to specific health issues. It’s sort of social issues and visiting and activity and you know that sort of thing. (Health Care Professional, Northern Ontario) [We need] more respite in the home and that respite be with hopefully, with one particular person going back over and over so that they know the person and what things they like to do and what things they can help them [with], peel potatoes or help them to even make beds or things that were always important to them. Not to sit there as a sitter sort of thing but to make that time spent with them meaningful. (Health Care Professional, South Eastern Ontario)

We need activity persons/recreationists to design, facilitate leisure activities to enhance quality of life in the home. Many people will NOT go to a day programme. (Care provider in mailed in response)

e. Need for respite and other programmes geared to meet the needs of persons with early

onset dementia and in early stages of the disease (e.g., appropriate day away programmes)

But I had a hard time and I think that the respite programmes … need a day programme for younger people. I got a thing from the Alzheimer Society and they’re saying that frontal temporal dementia can start as early as forty. It’s an early on-set thing from forty to sixty. But all these day programmes are really based around people who have limited mobility and limited things to do and they sit around a lot where [my husband] likes to be busy. So I think they really need … more physically challenging programmes for younger people. (Wife caring for husband with frontal temporal dementia, South Western Ontario) (Wife caring for husband with early onset dementia, South Central Ontario) –

My husband doesn’t need it yet because of our own situation [but] day care works wonderful for the next person.

(Another wife caring for husband with dementia, South Central Ontario) – He would feel out of place being that much younger.

(First wife caring for husband with early onset dementia, South Central Ontario) – That much younger yeah.

(Second wife caring for husband with dementia, South Central Ontario) – Well sure he would. [My husband] tells me they’re all old crocks so I can imagine they’re all his age. (participants chuckle) A young man would be out of place.


(First wife caring for husband with early onset dementia, South Central Ontario) – Yeah he would have a hard time. And you know for most of the programmes he would.

2. In-home services needed

In addition to respite, particularly the preference for in-home respite services, participants emphasised the need for other supports and resources provided in the home to support caregivers in the care of their relatives with dementia in the community for as long as possible. In order to continue to provide quality care in the home, caregivers, supported by care providers, expressed the need for more in-home health care, particularly doctors, but also nurses and other health care professionals who could make visits to the home.

Sometimes I really need the doctor to come to the house because I couldn’t get mother to go to the doctor’s office. And, that couldn’t happen so I found that a necessity. (Daughter caring for mother with dementia, Central Ontario) One of my greatest frustrations, we’re talking about frustration, was with the doctors. In my case my wife wouldn’t sit still long enough in a doctor’s office or in the emergency room in the hospital. I could not take her to the doctor, I’d ask the doctor to come … [make a] house call, and I was turned down every time I asked. So, there was a lot of guessing and frustration during sickness of what really was wrong because I could not get a doctor to complete a house call. (Husband caring for wife with AD, Rural Ontario)

Yeah because you got an Alzheimer’s patient like my husband, he hates to leave the house. All the Day Programmes are great, or say if we’re going to Tim Horton’s for a coffee he’ll get in the car and go. Otherwise, he feels no need to leave the house. So, if you cannot get that person to leave the house then you have to have the medical staff come to the house and look after him. (Wife caring for husband with early onset dementia, South Eastern Ontario)

Health care services in the home, however, were not the only services that caregivers

felt were needed to assist them in their roles, particularly in maintaining the person with dementia in the community for as long as possible. Caregivers expressed a need for other supportive services in the home such as the delivery of caregiving supplies to the home, shopping services, cleaning services, snow removal services, mobile teams of lifters, and recreation therapists who visit the home to teach skills to caregivers on providing meaningful programmes for their relative with dementia.

You need a mobile team of people, strong people females/males whose main function and sole purpose who are bonded, is to lift. You’ve got moving men lifting 2,000 lb. pianos up and down flights of stairs. I don’t, what I’m saying is you’ve got homemakers who will make a cup of tea and make a sandwich and if you’re mobile that’s great that’s why for many people those services are great. Then you’ve got nurses and doctors to deal with medical conditions. But there’s a gap in between if you’ve got an immobile person. Like my mama


cannot think or see or hear and she has a feeding tube and she cannot walk and my sister and I, we lift our mom every day. We need to transfer, lift from a bed to a chair and from a commode chair to a wheelchair, a wheelchair to a recliner chair. And I’m doing, we’re doing all right … but the problem is for my sister to go, she can’t go away … we don’t need somebody in there every day lifting, but for me to go away even overnight it is impossible because there’s nobody who wants to lift … That is a major need. (Daughter caring for mother with AD, Large Urban) More specialised in-home support … For example, a Rec Therapist could … identify something that works in a day programme and then need to teach the caregiver to utilize that same thing at home and you need it in-home … a specialised in-home person to teach that. (Health Care Professional, South Western Ontario) And even if they deliver [medications] too because as you say, you can’t necessarily get out. (Wife caring for husband with frontal temporal dementia, South Western Ontario) [Caregivers need] more homemaking service. You hear that over and over and over again. (Health Care Professional, Northern Ontario)

3. Environmental/community issues

A number of issues, problems, and changes needed in the community in general were raised by the focus group participants. The most common issues raised by caregivers and care providers had to do with accessibility issues such as the lack of transportation to get to programmes and services and the difficulties caregivers face when they take their person with dementia to community programmes or facilities. In particular, some caregivers highlighted the need for unisex or family washrooms in public places. Caregivers and care providers also talked about challenges faced by caregivers related to making the home safe for the person with dementia and the need for alternative housing options in the community.

Need for improved and affordable transportation, particularly to services and programmes, for persons with dementia and their caregivers

Now I said, “Well how do I get her to the doctor, I don’t have a means of getting her there, I don’t have the vehicle?” “Well, that’s your problem.” And, I didn’t have a way and I live in the country … There’s a need for some kind of assistance where someone could come to the house, pick us up, take us to the doctor’s office and bring us back home. (Son caring for mother with AD, South Eastern Ontario) And, most of us are doing the driving because there’s not enough transportation available. And, it takes me, I use up three days a week when [my husband] goes to [day programme]. I use up an hour and a half in driving time. (Wife caring for husband with dementia, South Western Ontario)


There should be transportation for taking you to the doctors and shopping and the dentist, all that kind of stuff. (Health Care Professional, Central Ontario) Transportation is a difficult issue because I’d like to have someone come to the day programme and because they’re cognitively impaired they don’t qualify, I think, on wheel transfer … That’s not helpful and that just puts more stress on the family because someone, a neighbour or family member has to take the time to bring this client in. (Health Care Professional, Large Urban)

Provision of unisex or family washrooms in public buildings

… there’s very few unisex toilets … I usually ask someone because he takes a long time. I wonder if he’s gone in to play with, pick up stuff off the floor or going to the bathroom, I don’t know. That’s hard. One thing I want is unisex toilets all through the town. (Wife caring for husband with AD, South Western Ontario) This is very serious problem because I went with my wife to Chicken Chalet the other day and of course she wanted to go to the washroom that was downstairs. I couldn’t leave her there. I stood for about half an hour, had to ask people coming out, “Can you see?” (Husband caring for wife with AD, South Western Ontario)

Need for supportive housing to keep families together as long as possible. For example, supportive housing where caregivers can live with or near the person with dementia; living arrangements supporting both the caregiver and the person with dementia such as apartment complexes for persons with dementia and their caregivers; and assistance with renovations to houses that make it easier for the person with dementia to function in their homes.

… the city itself [needs] to set up some type of house where you both can have your separate quarters … I know when we decided to move in together we found a house that had that set-up. I don’t know if it’s legal but it was already set-up because to us that was very important that if we were going to do this we had to have our own living space so that we respected their privacy and also they [respected ours], but yet we were in close quarters. Sometimes there may not be the space to do that but also too sometimes people have talked about little trailers that you can just put on a lot, on your property. (Daughter-in-law caring for mother-in-law with AD and Parkinson’s Disease, South Western Ontario) I’d say another gap is creative residential alternatives. Not long-term care but some sort of group homes or other housing options that the family can still, the informal caregivers could still be very involved but there could be a group supervision. (Health Care Professional, South Eastern Ontario)


I think funding for families, caregivers, the client. Because we have to make changes in our homes to protect them from wandering. We have to make changes in our home to protect them and I can’t afford to go out and do all that. Like I did a simple thing on my patio door – I just had a hole drilled through and put … a pin that drops in so the door can’t slide open. It’s up high enough he can’t see it because he’s not looking up. He can’t see to open that door up but I have two other doors that I have to secure so that he, cause after running ragged all day long when I hit the pillow I’m out. And he’s been getting up and I haven’t heard him when he gets out of bed and one of these days I’m going to wake up and he’s gonna be out the door and he’s gonna be gone and I live in an area where it’s bush all around me. So there has to be funding allowable for us to make our homes secure to protect our loved ones. (Wife caring for husband with early onset dementia, South Eastern Ontario)

4. Issues related to placement procedures

Caregivers identified specific concerns regarding current procedures3 and regulations to place a person with dementia into a long-term care facility. Once care becomes too burdensome, the only alternative for caregivers is to move their loved ones into a long-term care facility. And yet, this is often not a desirable option for caregivers. Caregivers expressed feeling pressured to move their loved ones to long-term care facilities before they feel they are ready. They also spoke of their concerns regarding the ability of long-term care facilities to maintain quality of life for the person with dementia once they have moved to long-term care settings.

(Daughter caring for mother and father, both with dementia, South Central Ontario) – Now you know what the problem is, they’re suggesting automatically that you put them in homes and that’s a hard thing to do, because, you know, once they go in there they’re not coming back out and that’s the end. And, that’s the hard thing for everybody that caregives to realise…

(Daughter caring for mother with dementia, South Central Ontario) – And, I also think that they try to push you into filling out the papers for the home and I just, I just don’t think that’s right. And now with this new way, the six months … it makes you feel like you’re pressured. Like you have to put them in.

(Daughter caring for father with AD, Rural Ontario) – I think that the nursing

homes are currently ill equipped to deal with someone who has dementia but is physically quite fit … And they do not have programmes in place to keep those people occupied and busy and that’s where they run into the difficulties. Even if they had, had someone with a therapeutic recreation degree that could put

3 The focus groups were conducted during April and May, 2002, so the comments made by caregivers concern

procedures in place at that time and do not reflect the changes made since then.


programmes in place for the dementia patients specifically. I find nursing homes do quite well if your loved one is confined to a wheelchair.

(Daughter caring for mother with AD, Rural Ontario) – They sit and listen to music…But if they’re like my mother who wants to rake and sweep and garden there’s nothing provided to put her into. I mean I’m keeping her as long as possible in probably an inadequate setting in her own home because it will kill her to be trapped. They feel trapped anyhow … So the physician and I have decided to keep her there as long as possible and she is on her own still. We’re struggling because I know there’ll be devastation.

(Same daughter caring for father with AD, Rural Ontario) – Well because there’s no other alternative.

(Same daughter caring for mother with AD, Rural Ontario) – I know there is going to be devastation, I’ll have to take her out in a straight jacket because she’s out raking and that’s what keeps her going is the physical.

(Spouse caring for husband with AD, South Central Ontario) – I just think that

they rush into putting people on the list for nursing home … Before they really need it. They’ve been trying for three years to get me to put my husband’s name on it.

(Another caregiver, South Central Ontario) – Four years it’s been on and then they kinda look at you when you say no, you know. I’m not ready yet. I think I’ll know when I’m ready but I’m not ready yet. Because by that time I probably won’t get a home.

(Wife caring for husband with early onset dementia, South Central Ontario) – But see that’s the problem though is that we shouldn’t have to do this to get a home four years down the road!

(Another caregiver, South Central Ontario) – You don’t know how quickly they’re gonna move from one plateau to another.

(Same wife caring for husband with early onset dementia, South Central Ontario) – That’s right you know. But how many are in the nursing home because … like my girlfriend they ended up putting her dad in, which ended up being a good decision in the end because he did worsen really, really fast. But when he went into the home they knew that he really didn’t need the home but they were afraid that he would get worse and they wouldn’t be able to get one. So they put him in six months before they really had to. So that’s a waste of a bed. For six months … Where he could’ve stayed home and somebody else could’ve used it.

Caregivers’ stories of their experiences reflected great frustration in current placement

policies and procedures. In particular, family members feel they do not have enough time to prepare themselves and their person with dementia for the move to long-term care once a bed becomes available. They also expressed their frustrations with the changing waiting list procedures as well as with the number of moves some persons with dementia go through before they reach the facility most preferred by the caregiver. Caregivers, supported by care


providers, emphasised the need for a placement system that does not penalize family caregivers who refuse placement (e.g., deferred waiting list).

(Wife caring for husband with frontal temporal dementia, South Western Ontario) – Or, you know, ample time to prepare yourself and the person because you can’t just say to your wife, “Oh dear, we’ve got a bed for you. Tomorrow you’re moving out of the house you’ve lived in all your life.”

(Husband caring for wife with AD, South Western Ontario) – This is exactly what happened. They called me at 4:00 on Monday and she called me at ten o’clock the next morning, are you ready? I said, “I haven’t even been to that home yet.”…

(Daughter-in-law caring for mother-in-law with AD, South Western Ontario) – …if all of a sudden you’ve got to make a decision within twenty-four hours when you’ve spent your whole life with this person, that’s not reasonable … you have to realise this is a major decision in their life, you know.

I feel a person should not be penalized because the room that they were offered was not acceptable … At Christmas time I was offered a room at [a specific facility] and we went to see it, we were ready to put him in and … the room was to be locked. There was another gentleman in there who did not like other people rummaging in his room. The door was [to be kept locked], he could get out but he couldn’t get back in. The bathrooms were not in the rooms so as soon as he came out to go to the bathroom he could not get back in and he would have been wandering the hall … To me that was not acceptable. And now, that was before Christmas and I haven’t been contacted again since so to me I feel really that I’ve been penalized because I refused. (Wife caring for husband with AD, South Western Ontario)

We received a letter this week … If you refuse you’re off the list and you have to apply six months from now … If you refuse, if you put down four or five places…and if you refuse one all the other four are no good. You’re off the list completely and you go back six months from now … Yeah, I don’t find that’s nice. (Husband caring for wife with AD, South Eastern Ontario) (Daughter caring for mother with dementia, Large Urban) – This is ridiculous,

this is like so absurd what’s happening with the CCACs and I just can’t help but mention because some of you may have received letters like this. But the whole long-term care waiting lists are like out the door …

(Wife caring for husband with AD, Large Urban) – We just don’t need this. (Same daughter caring for mother, Large Urban) – Appalling, appalling. (Same wife caring for husband, Large Urban) – I mean you’re already on the

system and then all of a sudden they’re going to change it to your disadvantage.

(Same daughter caring for mother, Large Urban) – Right, and I don’t recall any press on this. I don’t recall any real notice. There’s no rationale provided in the letter, they’ve very terse.


(Same wife caring for husband, Large Urban) – And it’s going to start May 1st. (Same daughter caring for mother, Large Urban) – And it’s like you either go

active or you’re gone and you’ll be gone anyway because you know your name comes up you’re off the list for six months. So these are serious problems for all especially aging population but even more so those who have really searched a place that you think might be sensitive to dementia more than others and … I think that [we need] the deferred waiting list … like in the specific sense of going back to sort of what it was, but even in a broad sense to me it’s like humane way of accessing long-term care. There may be a better way even to do it but the new way is not the better way. And, it really is cruel and unusual.

This is gonna be a real terrible situation because I have my husband on a list. … They say there’s a two-year waiting list, how do I know if he’s ready in two years, in a year, or in three years. Now they make it so you cannot refuse anymore, you can refuse one but if you refuse second they take you off the list for six months and you start at the bottom again and reapply. (Wife caring for husband with dementia, South Western Ontario)

I think that we’ve started to touch into long-term care and I think more of people with dementia, when [caregivers] make that difficult decision to place their loved one and they have to go on a waiting list and they have to wait and then with our system maybe go to (one community) to wait for a bed in (the preferred community) it’s devastating, it’s awful. And it’s not something that we like to do but it’s the policy that we have and we work with it but I think it’s just much more traumatic for a person that has memory disorder problems to be shipped around. And I wonder if somehow like when we’re prioritising for beds and they would go to the top limits because they were a Vet and maybe we could consider something like that more for people who have dementia. And with the wait in these different places we’re adding to probably the symptoms and then more difficult to manage the symptoms because they’ve increased in severity and they’ve been labelled, so many people don’t want to take them you know in the facility, so that’s hard. (Health Care Professional, South Eastern Ontario)

D. Issues Related to Funding and Stability in the Community Support System 1. Need for more funding for support services that is equitable across communities

A number of the systemic and service delivery issues and concerns identified by caregivers and care providers often were linked to funding issues. There was a general perception among the focus group participants that funding is not adequate to provide the supports and resources necessary in order to maintain persons with dementia in their homes as long as possible. Inequities across communities or regions in the funding provided was also emphasised by the focus group participants.


(Husband caring for wife with dementia, Central Ontario) –There is an extreme difference [between regions] because I went to visit somebody up in there, what I found was utter disgrace. Walked into his home, he’d just come home from hospital, walked into his home the house had no heat in it. He’d been in the hospital for dehydration. He was eighty-four years old. He’d had his back broken while serving overseas. There was no heat because he simply couldn’t get downstairs to the furnace. He arrived at eleven o’clock, he hadn’t had anything to eat, he didn’t understand his medication and we had to, and they had a needle in his arm yet…He’s alone. And when we asked why they did that, we’ve got no, the answer was, “We have no money.”

(Wife caring for husband with dementia, Central Ontario) – Well that’s what they say to everything…It’s the standard answer.

(Another husband caring for his wife with dementia, Central Ontario) – That’s what they said, funding?

(Same wife caring for husband with dementia, Central Ontario) – Well we’re all paying taxes but they still have no money…

(Another wife caring for her husband with dementia, Central Ontario) – It’s pathetic isn’t it? Barbaric treatment.

(First husband caring for wife with dementia, Central Ontario) – It was. I think the more hours leads to there’s not enough funding for the agencies. You need far more funding (agreement around the table). (Husband caring for wife with AD, Rural Ontario)

I think everything boils down to money at some point and time. Without financial aid nothing really comes off the ground. If the money’s not there to give support, how do you get anything going … More attention has to go, and it’s not just to me, it’s not just Alzheimer’s caregivers. There are people who are caregivers to stroke victims, to diabetics, to children who are disabled. [For] any person that’s disabled, there has to be more money put into the system for health care to provide for the caregivers and the person that is ill. (Wife caring for husband with early onset dementia, South Eastern Ontario)

I live in an area [which has] the most seniors in all of Ontario. We have the fewest services because they just don’t have the budget, the budgets have been cut back. (Wife caring for husband with AD, Large Urban) I think the respite programme that we provide here is really quite flexible. We provide services at night, we provide services on a regular basis or on an as needed basis. But we need to have more money to provide more services … So it’s quite flexible in that way and continuity … but there’s just not enough of it … You get twenty maximum, maybe twenty-eight hours a month and then it varies from one county to another, the time of year and where the budget’s at. One month it’s twenty-eight hours, oops we’re getting near the end of the year, it’s nothing. So that type of thing … There’s just not enough money to provide the services needed. (Health Care Professional, Central Ontario)


…around services specific to persons with Alzheimer’s and dementia the funding isn’t consistent even from district to district … I think there are real inconsistencies that need to be looked at from a provincial perspective in terms of services for persons with dementia … I think with respect to funding too there haven’t been the equity funds, new sort of long-term care dollars available in the north as there has been in the south. … so we haven’t seen new funding to support these programmes and so programmes like [name of day away programme] year after year have sort of the same fixed budget and salaries are increasing so they have less funding for promotion. (Health Planner, Northern Ontario) I guess the whole bottom line to all of this is enhanced funding for community services because we are the people in the community who are providing the services and we’re the ones that have never had any funding increases for ten plus years with one two percent exception … I think again, communities are underfunded. We provide the grassroots and we’re under funded. (Health Care Professional, Large Urban)

2. Concern with instability and inconsistencies in the community support and health care

system

The stories shared by caregivers and care providers in the focus groups also reflected a concern and frustration regarding what they perceived to be as continual cutbacks and changes to the system. They also identified inconsistencies in the policies and regulations across services that make it difficult for caregivers to understand what is available and which policies and regulations are related to accessing services. Furthermore, care providers emphasised that cutbacks to one support programme or service can have significant impacts on other services and programmes in the area and, in turn, can have negative consequences for caregivers and persons with dementia trying to access those services and programmes.

I mean if you want to get more people to know about it [the services], the only problem is the government has been cutting it down. Especially now. We used to have, I don’t know, how many hours we used to be entitled to … Fifteen hours, now it’s down to ten which I’m not using at the moment but if there’re more people there’s a big, long waiting list, what are you going to do about it if you get more people [wanting the services]? (Wife caring for husband with AD, South Western Ontario) (Husband caring for wife with AD, Rural Ontario) – Well some of the day-

away programmes have locked facilities, some of them don’t. Some of them have a good ratio, some of them don’t. There’s quite a mixture of day-away programmes. And they’re handled by different agencies, have different policies so it’s inconsistent. I think they need more consistency.

(Daughter caring for mother with dementia, Rural Ontario) – I think we [need] more consistency so that everybody knows what everybody’s talking


about …I think that setting up rules and regulations and whatever so everybody knows what everybody can do or cannot do.

(Focus Group Facilitator) – [seeking to clarify] So consistency in policies between…?

(Same husband caring for wife with AD, Rural Ontario) – The different agencies and their programmes…My wife attended day-away programmes in [three different communities] and all three were completely different.

(Daughter caring for father with dementia, Rural Ontario) – And to expand on that, consistency in policy based on information. With my father being a veteran we were informed about one thing through VA but then got to Ottawa and it was changed. So that [the information] has to stay consistent, definitely.

And the bigger issue there in the system is the contract bidding that these agencies have to do now with this government so that you can have your whole service just knocked out. It’s like well, “No not this time. The agency can’t, you know, they lost the contract.” We’ve just been through that … And, could I add that this constant changing of the rules is very, very upsetting. It seems that CCAC is only what, two years old, three years old at most? Before that it was health departments, the public health departments handled all this. Then they became Community Care Access which is only two or three years old and now they’re changing everything again. I mean it’s absolutely ridiculous. (Wife caring for husband with AD, Large Urban)

That reminds me of a situation very recently with [a specific day away programme] whereby I made a visit to someone who said to me, “Did you know we’re gonna be, the programme’s gonna be shut down?” I said, “Oh my goodness.” So I made a whole bunch of phone calls and low and behold it wasn’t just gossip it was actual and things were kind of hanging in the balance for a while and I was thinking to myself well what does this mean to Red Cross, what does this mean to ParaMed, what does this mean to VON, and the Day Away Programme and so on and so on? Because if for example that programme were to be dropped out of [the area] then that would increase the demands on all of the other players in the area and/or it would mean that people would go with needs unmet … And then there’s the whole what I call the domino effect on caregivers and the people up the street and the taxi drivers and so on and so on and so on. (Health Care Professional, Rural Ontario)

I’m with the senior support services and many, many seniors no longer use the formal supports because they told me they’ve been cut back in the past so often like from the CCAC service or whatever. They’re almost in a depression over it. They just can’t, they don’t want to put themselves in that position again of relying on a formal service and then being, it [is no longer] there. So they just, they say they’re just not doing it. (Health Care Professional, South Eastern Ontario)


And I think there has to be consistency with the Ministry as well in terms of what we’re doing, I mean it’s just been a roller coaster over the last few years. You have a service and then there’s a withdrawal of service which results in changes in policies which has an impact on, and it’s like a ripple effect all the way down based on funding, based on the resources that you have within a particular organization and whatever. And that’s just when I listen to the counsellors and what they’re talking about is the latest, is that we cannot get this anymore or we can’t do this or here is a policy that’s just now come down the line – Do you realize the impact for us? No. What that will do? And it’s just a continual inconsistency of that. (Health Care Professional, South Central Ontario) Well, that’s not consistent across the three CCACs in our area. [One specific] CCAC board took a position that they would protect the respite hours that were available to families and in the other two planning areas or areas of our district, [it] is always one of the first things [the CCAC] cut. (Health Planner, Northern Ontario)

Summary of Overarching Theme #1: Service Delivery/Systemic Issues

In sum, caregivers, supported by care providers, identified a number of limitations of

the current community support and health care service system that make it difficult for it to adequately meet caregivers’ needs. The system was perceived to be very fragmented, which made it difficult for persons with dementia and their caregivers to know where to go for services and how to access those services without having to go through a number of different agencies and a number of similar assessments. There was also concern raised about the perceived inequities in the availability of support services across the province. The participants emphasised that needed services and resources should be available to all caregivers of persons with dementia in Ontario.

Services also were perceived to be based on what is available rather than on the specific and changing needs of caregivers as they cope in their roles throughout the progression of the disease. The timing of services often does not match the need for services and other limitations within what is perceived to be an inflexible system, making it very difficult to adequately meet the unique and ever-changing needs of persons with dementia and their caregivers. Regular and continual monitoring and assessments of both the person with dementia and the caregiver, the identification of one contact person for caregivers and persons with dementia, and being cognizant of the language, cultural, gender, and age issues related to providing quality care were deemed to be critical to more effectively addressing caregiver needs throughout the progression of the disease.

Caregivers overwhelmingly emphasised their preference to maintain their loved ones in the home as long as possible. In order to continue to cope in their roles, caregivers emphasised the need for adequate respite programmes, with a preference for in-home respite over other options. However, caregivers also recognised the need for easily accessible emergency respite services to help them in crisis situations and for overnight respite so that


they could get a good night’s sleep. These programmes had to be meaningful to persons with dementia in different age groups as well as in different stages of the disease. The maintenance of a person with dementia in the community also required additional in-home services such as in-home health care by physicians and other health professionals, delivery services, mobile lifting units, and more adequate homemaking services. Other services or programmes that would help community-based caregivers included accessible transportation services, the provision of unisex or family washrooms in public buildings, and supportive housing options in the community that would allow families to stay together as long as possible.

Caregivers talked about a number of concerns they had related to moving their loved ones to a long-term care setting. Although many caregivers recognise they may not be able to continue to care for their person with dementia in the community, they often feel extreme pressure by the system to place a loved one into a long-term care setting before they are ready. Caregivers also expressed concerns about the quality of care provided in long-term care facilities, highlighted the stress involved in trying to move their person with dementia within a very short period of time once a bed becomes available, and emphasised their frustrations with the changing placement policies and procedures, particularly the new regulations for waiting lists requiring caregivers to take a bed when offered or they are removed from the waiting list.

A number of the concerns raised by caregivers and care providers were, for them, ultimately linked to insufficient funding for health care and community support services. Some caregivers have witnessed cuts in their services that they perceive to be a consequence of cuts to service agency budgets. In order to adequately meet the needs of all caregivers of persons with dementia in Ontario, caregivers and care providers felt there was a need for more funding for support services that was equitable across communities in the province. It was perceived by the participants that more sufficient funding would provide more stability in the system and could help address inconsistencies in the availability and the accessibility of needed support services across the province.



HUMAN RESOURCE ISSUES

The second common area of concern among caregivers, supported by care providers, dealt with issues related to having adequate and specialised human resources to address the unique needs of persons with dementia and their caregivers. The human resource issues identified by the focus group participants generally fell into four sub-themes: the greater need for specialised services, the general need for more human resources, the lack of consistency in staff, and the need for better strategies for the recruitment and retention of trained volunteers and front-line staff. A. Greater Need for Specialised Services

Caregivers and care providers discussed the need for specialised services, particularly geriatricians and psychogeriatric professionals, in all regions of the province including rural areas – specialists who could address the unique needs of persons with dementia and their caregivers. These specialists were seen to be critical to proper assessment and early diagnosis and ensuring that persons with dementia and their caregivers were provided with appropriate support services and information as early in the disease process as possible. There was the perception among some of the focus group participants that these specialised services were available, but were not accessible to all persons with dementia and their caregivers across the province. It was also felt that other professionals such as social workers and bereavement counsellors, occupational therapists, and physical therapists with training in dementia and dementia care should be accessible to persons with dementia and their caregivers across the province when needed.

(Daughter caring for father with dementia, Northern Ontario) – Yeah, wouldn’t it be nice to have a specialist who dealt with just Alzheimer’s and we could just go to that specialist?

(Another caregiver, Northern Ontario) – They exist, not here. They do exist. I think they need more physiotherapy, occupational therapy. (Daughter caring for mother with dementia, Central Ontario) The other thing that I think is missing is specialised services. I mean we have some but I don’t feel like there’s enough or it’s adequate in terms of assessment and diagnosis (Health Care Professional, South Western Ontario) Well on the human resources, even the human resources for assessment and diagnosis, chances are we need them, we do big time. But the number of geriatricians in this province are [really very] limited. (Health Care Professional, South Western Ontario)


So that each region would have a psychogeriatrician, the geriatritions and all of that support which we’re so short of right now. I mean we have to share or borrow from [other regions]. (Health Care Professional, South Central Ontario) In some areas of the district there’s an inability to recruit therapists … An example, there’s no social worker available to people who live in [the north], period. There are no social workers there … so for a family who needs that support, it isn’t there.” (Health Planner, Northern Ontario) …knowing how important OT [occupational therapist] is that many of us, like each facility, would like to be able to access them much more often, the insights of someone like the OT, or all kinds of other professionals. (Health Care Professional, South Central Ontario)

B. General Need for More Human Resources

There was a general agreement among the focus group participants regarding the shortage of human resources and that this shortage was most critical in the health care and community support service system. Caregivers and care providers expressed their concerns regarding large and unmanageable case loads and the need for more staff in the community support system and in long-term care facilities to better meet the individualised and changing needs of persons with dementia and their caregivers.

They have a manor [in my region] and I’m told eighty per cent of the people in that manor have some form of dementia most of it’s Alzheimer’s. They’re understaffed apparently and when the people go in there they drug them and they put diapers on them and every so often during the course of the day they have a big diaper change. And so then [another facility] which is also around that area, my father-in-law was telling me that it’s not as bad in [that facility]. It’s a much smaller place but again they’re understaffed … I’m saying that we probably need more staff, more trained staff. (Daughter caring for mother with AD, Northern Ontario) There would be more people [staff] available, but see that all again has to do with money. Like they [agencies] say well we can only hire twelve people or we can only hire fifteen people and they have to divide the time among all this. So if the government is saying well we really are concerned and we want to help they kind of have to put their money toward that and say that you can have fifty people that will work with different groups to help you. (Husband caring for wife with AD, Northern Ontario) I just got a letter from our Paramed which says that Paramed is short staffed and that they at times will not be able to send somebody to the house even though they’re slated to come. But they don’t have the staff to send to the house. This is, you know, that’s out of the question. (Adult son caring for mother with dementia, South Eastern Ontario)


From our perspective, it’s the number of clients within a caseload that case managers carry because there isn’t enough human resources or financial resources to decrease those caseloads. We’re talking one hundred and fifty or so and that’s not adequate for dementia. And, the willingness is there to go towards smaller caseloads but the money isn’t there to support that. (Health Care Professional, South Eastern Ontario) …for example, for me, I mean I have three hundred clients, caregivers. Well you know that’s a lot. And to see those people on a regular basis, impossible. (Health Care Professional, Large Urban) [There is] a lack of human resources and money … [money] to be able to put people out there to do the job…to support the human resources … and support the programmes that are out there and currently existing (Health Care Professional, South Eastern Ontario) I think you might want to expand on the time, the use of the word time. Time for the staff who are already existing but it means less caseload, so more people and more money to pay more people so that you’ve got smaller case loads so that you do have more time. It’s not just giving us more time. We don’t want a lot more work but we do want a lot more people to help us with them. (Health Care Professional, South Western Ontario)

C. Lack of Consistency in Staff

Another human resource issue identified by caregivers was reflected in their concerns that staff, particularly home support workers, are constantly changing, which causes a number of difficulties and stresses for persons with dementia and their caregivers. Caregivers and persons with dementia prefer consistency over time in the health professionals and home support workers providing care.

I think continuity [in staff]. I can’t speak to the traditional Alzheimer’s [person], I can only speak to my case with Pick’s disease. The change in the face [of the care provider] is a huge change … and the shock of having to change the face. Everything’s going along smoothly and people say I don’t think there’s anything really wrong with [your person with dementia] until you change a caregiver. And you say wow, what happened to her? They changed the caregiver. (Husband caring for wife with Pick’s Disease, Large Urban) I think the same homemaker all the time [is important]. That caused such an upheaval here when they bought out, or the Red Cross lost the [contract], it was just terrible because I must have had I don’t know how many different ones [home support workers] over the time and especially a person with Alzheimer’s gets used to somebody and they finally like them…and then they changed it. (Wife caring for husband with Lewy Body Dementia, Northern Ontario)


(Daughter caring for father with AD, Rural Ontario) – And just one other point

as well, in the early stages when we were accessing support for mom and dad, they were sending different people and it’s really important for an Alzheimer patient to have the same person every time. (All agree with caregiver) They have to feel that they can trust that person and mom had to become very insistent that no it had to be this one person with whom [my father] had developed a rapport each time and so you really have to advocate strongly on behalf of your Alzheimer patient. A lot of people are not that assertive and so as soon as they have the first door slammed in their faces they give up….

(Wife caring for husband with AD, Rural Ontario) – We have a caregiver that is very close to my husband but I mean they need vacation too. So I found it was better to get another girl also in with my husband, so there would be at least two that he would feel comfortable with. Because they can’t always be available, the people that you want.

It is better to have the same person. They feel much more secure … Absolutely. Sometimes I just didn’t feel safe and sometimes I didn’t know the person at all and they would come and I would think to myself this is a stranger to me and it’s a stranger to my mom. When my dad was there I felt he could express what my mother wanted but quite often she could not and I felt safe when he was there. But when mom was alone sometimes I just didn’t feel safe going out leaving her with certain homemakers. (Daughter caring for mother with dementia, Central Ontario) And the other barrier to service is inconsistency of workers. Every time there’s a change in worker, that person has to stay home, go through the whole routine with them and reorient them too, and it takes more than one visit for that. And this happens over and over and over again until finally the system overwhelms the caregiver, the primary caregiver, and they say, “I don’t want any part of it, I’ve had enough. I can’t deal with this any more.” So that’s a big barrier. (Health Care Professional, Large Urban)

D. Better Strategies Needed for the Recruitment and Retention of Trained Volunteers

and Front-Line Staff

Related to the lack of consistency in staff over time, caregivers and care providers emphasised the difficulty in recruiting good staff and volunteers and retaining them over time. More effective ways to recruit and retain trained persons to work with persons with dementia, particularly volunteers and front-line staff, were needed. The provision of adequate wages and benefits to home support workers working with persons with dementia was regarded as a primary means of recruitment and retention. Furthermore, recruitment of care providers from different ethnic and cultural groups to better meet the diverse needs of caregivers and persons with dementia was emphasised.


Pay people, pay those workers more…So you get quality people. (Daughter caring for mother with AD, Large Urban) You get what you pay for, you know. If you’re going to pay somebody $7 an hour you’re not going to get an RN for sure. (Wife caring for husband with early onset dementia, South Central Ontario) Well there’s lots of human resource issues happening within the last year or two, there’s been lots of turnover, difficulty retaining staff because of pay issues. (Health Planner, Northern Ontario) It’s difficult to recruit volunteers … and retain them. But then you ask them to go out and provide a service they’re ill equipped to provide with the physical needs included. People who are incontinent, who need to be supported to eat, to dress. And you look at the hours where caregivers need service, over the mealtime, in the evening, overnight. A volunteer is not going to be able to maintain that kind of commitment. (Health Care Professional, South Central Ontario) We were asking for all of that from people who are going to work in a person’s home alone with a person with dementia. We need to be compensating them appropriately and I think that’s the other place that we tend to fail right now. (Health Care Professional, South Central Ontario) I mean all of these ladies and gentlemen [home support workers] are on a casual or permanent part-time basis. They lust for full-time. They lust for pension. They lust for benefit packages … not sick pay. If you’re sick you’re out of … it comes out of your pocketbook. So we have to recognise, while we’re recognising families, the people that we’re sending into the home – they’re lowest. (Health Care Professional, Large Urban)

(Health Care Professional, Large Urban) – If we’re talking about personal

support workers, I know that a lot of Greek clients are basically pleading with us to send them Greek speaking home help when in reality it’s just not there. So advertising has to be done within the communities, the ethnic communities, to promote these kinds of positions and of course the benefits have to be there as well for the person to be entering the field … [we need] to give value to this field because these people think it’s just a clean-up job and they’re going to be bathing people and it’s a hard job and in a lot of cases it is, but to be recognised in pay, benefits, and prestige…

(Another Health Care Professional, Large Urban) – And they’re paid less in the community so a nurse working in a long-term care facility or in a hospital will get paid more than if she’s working in the community, so why should she stay?


Summary of Overarching Theme #2:

Human Resource Issues

In sum, caregivers and care providers identified a number of issues related to maintaining an adequate human resource base in the health care and community support service system. Participants expressed a perceived need for specialised services, particularly geriatricians and psychogeriatric professionals, but also other professional services (e.g., occupational therapy, physiotherapy, social workers), who would be accessible to persons with dementia and their caregivers all across the province.

They also expressed their concerns and frustrations with large and unmanageable case

loads, with the lack of staff within community services and programmes as well as in long-term care facilities, and with the lack of consistency in staff providing support to persons with dementia in the home. Given these human resource constraints, it makes it very difficult to address the individual and changing needs of persons with dementia and their caregivers. More effective strategies were needed for recruiting and retaining trained front-line staff and volunteers, including both males and females and individuals from different ethnic backgrounds. Increasing needed human resources requires a commitment to providing higher wages and better benefits to front-line staff interested in working with persons with dementia and their caregivers.



PUBLIC AWARENESS AND EDUCATION FOR SERVICE PROVIDERS

A third overarching theme common among caregivers and care providers, and very much related to the human resource issues identified earlier, centre around education and public awareness. The issues and concerns raised by caregivers and care providers generally fell into two sub-themes: the need for specialised training for all care providers, and the need for greater public awareness of dementia. A. Need for Specialised Training for All Care Providers

Caregivers and care providers agreed that all persons providing care to individuals with dementia need specialised training in dementia and dementia care. It was generally recognised that because of the unique and changing challenges associated with dementia over the progression of the disease, caring for someone with dementia required a different skill set than care providers working with other groups. A strong knowledge base on all stages of the dementia process, on all types of dementia, as well as an understanding of the complexity of dementia were also seen to be important to providing appropriate, quality care. The focus group participants identified a number of specific care provider groups who needed specialised training and education in dementia and dementia care, including: physicians and other health care professionals; staff working in acute care settings and long-term care facilities; and formal care providers working in the community, particularly front-line staff. 1. More education for physicians and other health professionals in dementia and

dementia care

One of the most frustrating experiences expressed by caregivers was dealing with physicians and other health care professionals who did not seem to understand dementia and the stresses associated with providing dementia care. Caregivers, supported by care providers, recommended the need for more education for physicians and other health care professionals (e.g., occupational therapists, physiotherapists) in dementia and dementia care, including sensitivity training on the stresses of a diagnosis of dementia and of the challenges associated with caregiving. It also was emphasised that more education was needed for physicians and other health care professionals to increase their awareness of the support services and resources available to caregivers so they can make more appropriate referrals that ensure persons with dementia and their caregivers receive needed support services, resources, and information as early in the disease process as possible.

I think that doctors themselves have to be more aware of Alzheimer’s and dementia. It’s been my experience in the last ten months since I’ve been involved with this that doctors know, most doctors know very little about this


disease and [that it] is a disease that is progressive. (Daughter caring for mother with AD, Northern Ontario) The highest priority would be knowledgeable people, doctors, gerontologists etc. who deal strictly with dementia and able to contact and direct families to the proper persons to give help and enough persons in a particular area so the waiting is not four to five months long. If things don’t improve I fear for my children and grandchildren in the next 20 to 30 years. (Wife caring for husband with dementia, South Central Ontario) The other area of need in what’s missing [is] the family doctor…however nice they are, how much confidence [they have], today they’re general practitioners and they’re not much use in this field. They’re helpful, but they’re not broad enough and they’re not trained to take you in the right direction. (Husband caring for wife with Pick’s Disease, Large Urban)

Even going back, I remember when my wife was diagnosed we took a second opinion, went to two different specialists. Both of them, the bedside manner was terrible. The way we were told was shocking. We were not given any information or support of where to go from that stage. I think it’s very important that the doctors that diagnose carefully, … how they tell the people or leave it up to the family doctor. And the other thing is to give them some guidance. Like point them to the Alzheimer Society or get them started somewhere. Just not out the door goodbye you know. (Husband caring for wife with AD, Rural Ontario) [They] should force doctors to be on top of what’s going on with Alzheimer’s because most doctors have no interest, they don’t have the time or even the inclination. It’s just like, they’re not that interested. … They don’t seem to know that much about it. So if the government kind of forced the doctors to take courses or keep up with the latest things coming up that would help the people who are caregivers complaining to their doctors for some kind of help. (Wife caring for husband with dementia, South Eastern Ontario) We have to remember that most people or all people have worked very hard all their lives. And when they become ill, whether it be dementia or any other disease, they can’t be just put on the chair and forgotten about. They need to be treated as human beings and I find that a lot of times you do have a lot of staff that are compassionate and caring but when you have doctors that, they don’t understand. Like I’ve told my doctor that I’m under a lot of stress … And he tells me well change your lifestyle. Well Mr. Man how can I change my lifestyle. I am a caregiver and that’s not gonna change until my husband passes away. (Wife caring for husband with early onset AD, South Eastern Ontario)

Uh, it’s funny, when I got involved with CCAC, as I said it was through my daughter-in-law [who] made some phone calls and through them we got in touch, …I mentioned that to the people at CCAC and the answer I got was gee


I guess we’re not doing enough publicity ourselves, we’re not making it [known], ourselves, what we offer well enough known to doctors, to different places…And this is what the girl, I forget who it was but whomever I was talking to at CCAC she said this herself, she said, “I guess we’re not doing a very good job of public relations even within the medical profession.” (Wife caring for husband with frontal temporal dementia, South Western Ontario)

At that time I just didn’t know about it, any programmes that were out there for my mother. Actually it was my doctor because I just like, I broke down. I couldn’t do it no more you know. So it’s only probably been about a year and half now that I’ve actually had people come in and look after her…It wasn’t her own family doctor even, it was my doctor…They [doctors] don’t tell you about the programmes. But it was actually my doctor, only because I broke down…like I was just totally exhausted. (Daughter caring for mother with dementia, South Central Ontario) I found that caregivers are unaware of the services because family physicians are ignorant about them and have no inclination to find out. I couldn’t even get the appropriate testing for my husband because the doctor wasn’t sure who to refer us to. (Wife caring for husband with dementia, South Western Ontario) And the other thing I had meant to bring up earlier was around education for family practitioners, GPs. Because they’re the frontline client, the frontline in terms of possibly the family member identifying changes. So really educating them in terms of being able to identify potentially early stages of dementia. And also having them understand what services may be out there because I’ve had referrals of clients who, their illness has well progressed and they’ve not been referred on. It may have been a lack of the family practitioner or somebody in the family practitioner’s office saying, “You know what there’s other things that can occur you know” and sort of getting on board early on in the process. (Health Care Professional, South Central Ontario) We were at a health fair this weekend and we asked some questions pertaining to access [to] services and how they would find the information about services. And we were quite surprised by the answers because the number one response was go in to their doctor and the second one was go in to CCAC which was good. But I think that we need to ensure that doctors are aware of the services that are being provided in the community. And not only doctors but also their nurses in their offices as well. (Health Care Professional, Rural Ontario)

2. Accessible education on dementia and dementia care needed for staff working in acute

care and long-term care settings

Caregivers and care providers also discussed the perceived lack of training of staff members working in acute care settings (e.g., hospital settings) as well as long-term care facilities (e.g., nursing homes, homes for the aged, retirement homes). It was generally perceived that many of the staff working in these settings did not have the knowledge and


skills necessary to provide appropriate care to persons with dementia. It was emphasised that more education on dementia and dementia care was needed for staff working in these settings and that education and training opportunities had to be easily accessible to these staff members.

The staff in the nursing homes, unless they’ve been sent away to school or have had training, they don’t know how to cope with these patients [persons with dementia]. They don’t know how to be gentle with them. (Sister providing support to a sister caring for her husband with AD, Northern Ontario) (Daughter caring for mother with dementia, Rural Ontario) – I had my mother

admitted [to hospital] for health reasons … beyond the dementia and I met a nurse in the hall and she said to me, “I just can’t get a history from your mother.” And I said, “My mother is an Alzheimer’s victim.” And she said, “Oh well that makes sense.” Well you know I shouldn’t have had to tell her that … I just couldn’t believe it. I said, “She’s been in three days it’s taken me this long to tell her she’s in the hospital.” “Yeah I know we keep telling her and she just doesn’t get it.” And I said, “No, she doesn’t.”…

(Another daughter caring for mother with AD, Rural Ontario) – I had an experience like that [with] my mother in her earlier stages [where] she had aortic stenosis, which is a bad heart valve and she was admitted with some angina and I had gone in and my mother kept trying to get up to leave.

(First daughter caring for mother with dementia, Rural Ontario) – Of course. (Second daughter caring for mother with AD, Rural Ontario) – And they kept

asking her questions and when I walked in, the nurse at the nurses’ station said, “Do you realize that she has dementia?” And I said, “Well what planet are you on?” Like give me a break, I mean are you really a nurse?

One step farther on long-term care, I’ve had dealings with three long-term care, I would call them government sponsored nursing homes, in trying to place my wife. She was in and out of them in two days, I hauled her back out again. They had no training in how to deal with Alzheimer’s yet they told me they had. Their way of dealing with them was drugs and lock-ups … And when I went back afterwards and talked to the Boards of those nursing homes I found out that they’re trying to get into a training programme, they haven’t got there yet. I had to go to a private facility to get the proper care. So there, lack of training and lack of funding, I guess, to get the training. (Husband caring for wife with AD, Rural Ontario)

(Health Care Professional, Central Ontario) – And huge training [is needed] in

these long-term care facilities. I know not all staff have got [it]. (Focus Group Facilitator) – [seeking to clarify] So specialised training in

dementia? (Health Care Professional, Central Ontario) – Yes.


(Health Care Professional, Central Ontario) – But if you say that, you have to say that the long term care facility be mandated, whatever, to pay these people to take this training…They’re asked to do a forty-five minute, thirty minute, between their shifts. Pathetic.

(Another Health Care Professional, Central Ontario) – And pay for [it] themselves.

(First Health Care Professional, Central Ontario) – They should be given the time off and be covered and they should be encouraged and paid money.

(Another Health Care Professional, Central Ontario) – Paid for training so they can afford to do it and that shows that management has that wonderful support.

…just to add on that, the same sort of [thing] happens in terms of clients who end up coming into hospital perhaps for a medical issue or if it’s just stress, caregiver stress, or there’s been an issue with the care provider they’re not able to care for the person any longer perhaps because of their own need. … again there’s no sort of specialised area for this type of clientele to receive in hospital. They end up on general medical floors which are not secure. … again there’s a lack of understanding and training and knowledge base from the skill set of the staff providing the care. (Health Care Professional, South Central Ontario)

(Health Care Professional, South Western Ontario) – But just even extending

that, when I have clients that go into the hospital setting, just too many staff are not familiar with how to deal in an emergency setting or on the wards with people with dementia and that’s part of our curriculum. … so I think [it keeps] reinforcing that, … that’s absolutely what has to keep coming because the pyramid has turned and we’re seeing all the elderly people out there and I just get, I just get angry sometimes…

(Another Health Care Professional, South Western Ontario) – I think the Ministry of Education needs to put it in the core curriculum.

3. Accessible education and training on dementia and dementia care needed for formal

care providers working with persons with dementia in the community

In addition to physicians and other health professionals and staff working in acute care settings and long-term care facilities, caregiver and care providers agreed that more education and training on dementia and dementia care was needed for formal care providers working with persons with dementia, particularly front-line staff working in community support programmes. Again, it was emphasised that these educational opportunities had to be accessible to staff.

I think all home care workers should have to take a certificate class in dementia and related illnesses … It’s a different world … It should be part of their training and they shouldn’t be able to come in unless they are trained. It’s dangerous, it’s dangerous for the person being cared for and it’s also


dangerous for them to come in into a situation and try to handle it … because we’re not dealing with a rational person most times. Not necessarily violent or whatever, some are some aren’t … But you still have to know how to handle it. (Wife caring for husband with early onset dementia, South Central Ontario) My suggestion would be that maybe a portion of a certain amount of those care providers [front-line] are specifically trained for Alzheimer’s type dementia people. (Daughter caring for father with dementia, Rural Ontario) And, the ones they do send are not qualified. There’s no training. They pick them up, they give them a couple hours on a course and away you go. (Son caring for mother with AD, South Eastern Ontario) Regarding the day away programme at the hospital, I was taking my husband for a while and they asked me not to bring him back because they didn’t have the staff to cope with him … He would wander down the halls and they had mostly volunteers, untrained people and they were worried about his behaviour and maybe he’d strike out at them because he was upset because I would leave. He was cursing and swearing and they couldn’t deal with him so they asked me not to bring him back. (Wife caring for husband with Pick’s Disease, Rural Ontario)

[There should be] ongoing education for all service providers that are on the front line … Educating all your care providers so we’re giving a consistent type of approach with the care [to] the caregiver and the client. So educating all levels of care providers, because some of them don’t have a lot of information about dementia and they have good intentions but I think sometimes you need education. (Health Care Professional, South Eastern Ontario) You need to establish a baseline for education so that there is continuity and consistency. So we need, in our ideal situation we would just like a college please with lots of people to teach, available to teach everybody and lots of resources available and everything’s paid for … So committed, committed funding, consistent not sporadic funding. We want a consistent funding base for education. (Health Care Professional, South Eastern Ontario) It would be nice to have a regulated education programme out there that we provide that if you’re going to work with dementia you have to have it. So everyone’s at least at a basic level and then from there you know the agencies can help expand the level of education [through professional development]. (Health Care Professional, South Western Ontario)

I think a lot of it comes down to education. I think there’s a real lack of education what this disease is, what it needs, how to care for someone. I think that often times care providers are going into these homes to work with people that have no idea what this disease is or how to communicate or all the other


things that one needs to understand to truly give good service to the individual and their family. (Health Care Professional, Large Urban) Well I think there’s always room for more education for … the paid caregivers that are already in the current support services. When I ask people, and I have a lot of people I have conversations with, why they don’t take courses they say because they can’t afford it or it’s not subsidized or it’s difficult to access. In other words the courses being offered when they’re already at work. And so they would not take time out of their regular working day to go access that bit of information that’s being offered. (Health Care Professional, Rural Ontario)

4. Research needs related to dementia and dementia care

In addition to increased education for all those working with persons with dementia, caregivers and care providers emphasised the need for more research on dementia and dementia care. Furthermore, they expressed their concerns regarding the communication of research results to caregivers and care providers in order to keep them appraised of current best practices. Caregivers and care providers want to know that research findings do not simply sit on a shelf, but are used to make positive changes to the health care and community support system and to improving the quality of life of persons with dementia and their caregivers.

And also the frustration that there’s no medication that they will give for it. We’ve been on a waiting list now for a drug trial which has been postponed twice which is supposed to tentatively go ahead the first of April but we haven’t been called yet. They won’t give him the Alzheimer medication. He has a lot of obsessive compulsive behaviour and there’s nothing to give him. So they need to do more research. (Wife caring for husband with early onset dementia, Rural Ontario)

Get rid of Alzheimer’s. More testing, more research. (Sister who supports a sister caring for her husband with dementia, Northern Ontario) Unlimited funding for research so that…dare I say it some kind of cure can be found…You have to put unlimited on there. If you put unlimited resources you’ve got to put unlimited funding for research. (Health Care Professional, South Eastern Ontario) (Caregiver, Rural Ontario) – I don’t exactly know what the process is for, when

you might actually see ideas [from research]. (Daughter caring for mother with AD, Rural Ontario) – Change, change, yes

see some benefits. (Same Caregiver, Rural Ontario) – [Not] just another report that gets filed. (Same daughter caring for mother with AD, Rural Ontario) – That’s what I’m

concerned about that all these you know research projects are all fine and well but is there going to be anything productive in the end or is it


just another thing they’re going to statistically set aside to do more research….

(Same caregiver, Rural Ontario) – Well I’d really like to believe from what I have seen throughout the process of this particular study that there is a real commitment on the Ministry of Health and Long Term Care’s part to want to hear. They’re financially supporting this initiative and this project and I think that they are really sincere in wanting to make some changes but want to make sure that they’re making some changes based on some reality.

…they sometimes said we would not get the results. Like I was, my wife was asked to participate in a medical study. They wanted [her to] go [to] downtown Toronto for about two years once a month. But they wouldn’t give me any feedback of the study. So I refused to go because maybe it would help somebody else but I wanted some information as well … A lot of these studies are like that, they’re confidential. (Husband caring for wife with dementia, Rural Ontario) How many studies do we have to have? We can’t go through all these studies that the government does year, after year, after year … And end up with the same results as we have right now. … Just like that lady said she needs money. Let’s find somebody that can make sure she gets it. (Son caring for mother with dementia, South Eastern Ontario) In our community, we’re not really well connected into research yet. If you’re in Toronto or you’re in London there are chances you could be involved in a research study but it’s a real leap of faith from here … And, so if we were building part of that you know community health centre, having a research component that was tied to the universities or tied to somewhere … I wanted to somehow incorporate … the research component that … people with dementias and their families have access to and we seem to be a little weak here in that. So again it would be tied, it could be tied with our community health centres with one of the docs who knew of the studies and could connect them with the universities to, to make these people part of it [the study] if they wanted to be. (Health Care Professional, South Western Ontario)

B. Need for Greater Public Awareness of Dementia

Caregivers and care providers generally felt that educating those who work with persons with dementia and their caregivers (e.g., physicians, formal care providers) was not enough on its own. The focus group participants also placed importance on making the general public more aware of dementia and the realities associated with providing care to a person with dementia, particularly on the stresses and needs of caregivers.

In their stories of their personal caregiver experiences, caregivers talked about the loss of friends and support systems due to what they perceived to be the lack of awareness of dementia in the general public and the fear of persons with dementia that often goes hand-in-


hand with lack of awareness. They also emphasised the need for more education on dementia and dementia care in the workplace so that employers were more sensitive to the realities of caregiving for caregivers and could develop workplace policies that would better support caregivers in their caregiving roles.

(First wife caring for husband with AD, Northern Ontario) – More publicity maybe. Like when they used to have it on once in awhile people would catch on. Like they used to have blurbs every once in awhile about Alzheimer’s on the T.V. but I haven’t seen one for a long time. And it makes people more understanding I think. Or more publicity of the things that are available or whatever.

(Focus group facilitator) – [seeking to clarify] Public awareness? (Second wife caring for husband with AD, Northern Ontario) – And if you

could just sort of explain to your friends you could still come over and visit even though, like it boggles my mind. Like none of your friends come.

(Third wife caring for husband with AD, Northern Ontario) – It’s the loneliness.

(Second wife caring for husband with AD, Northern Ontario) – And it’s really, really strange and just one friend comes and drops in. “How are ya doing [person with dementia’s name]?” and [my husband] just looks at him like this and sometimes he says, “Oh fine, nice day.” But most of the times he just sort of puts his eyes down and looks at him like that. And then our other friend that used to be a fishing buddy with him there he said, “I can’t see [your husband] like that because it makes me cry.”

(First wife caring for husband with dementia, Northern Ontario) – Yeah, so he doesn’t come at all.

(Second wife caring for husband with AD, Northern Ontario) – No, so nobody comes any more …There was only one man friend and he has since passed away that would call and say I’m going to come and take [your person with dementia] for a walk on the boardwalk on Wednesday is that OK? I’d say that’s fine, because he really likes to walk and so he would come and take him. But the other people they just can’t see him like that. They get really distressed and they said, “If we knew we could do something we’d come but he can’t talk to us any more or anything like that and we really feel bad.” …They could play cribbage. You don’t have to talk to my husband, come and play cribbage with me. Just another body in the house and sitting there at the table you know. Or come and have lunch, I’d make a lunch or something.

(First wife caring for husband with AD, Northern Ontario) – They’re afraid a lot of people are afraid.

(Second wife caring for husband with AD, Northern Ontario) – And they’re so uncomfortable they don’t know what to do … so they just don’t do anything.

(Focus Group Facilitator) – [seeking to clarify] So public awareness might help?

(Second wife caring for husband with AD, Northern Ontario) – Umhm, yeah.


(Husband caring for wife with dementia, Central Ontario) – …a lot of the older

people don’t want to be associated with people that got Alzheimer’s. (Daughter-in-law caring for mother-in-law with dementia, Central Ontario) –

Umhm, that’s the bottom line a lot of times. (Another husband caring for wife with dementia, Central Ontario) – It’s fear of

the unknown that’s, that’s her big problem. (Wife caring for husband with dementia, Central Ontario) – Hasn’t been

brought up yet but, a lot of friends are lost when they find out the word Alzheimer’s associated with your family. Your friends sort of diminish very quickly.

(First husband caring for wife with dementia, Central Ontario) – We were just talking about this coming down and I’ve been to church for many years, people from the church ZIP, none. Never phone, never do anything.

(Focus Group Facilitator) – [seeking to clarify] So what’s missing? Is it a lack of education that the general public has?

(Daughter-in-law caring for mother-in-law with dementia, Central Ontario) – Yes…

(Another wife caring for husband with dementia, Central Ontario) – And more information spread around about the disease so that people aren’t afraid of it.

(Daughter-in-law caring for mother-in-law with dementia, Central Ontario) – Yeah I think that’s very important. People do not know what Alzheimer’s is until you’re in the midst of a crisis. Like how do you build a [support] system if nobody knows.

(Son caring for both parents living at home, South Central Ontario) – If I

compare my own experience to what I would have liked to have seen happen I think twelve months ago when on the recommendation of our family doctor, I went to my employer and said, I would like … an unpaid leave … and to be an in-home caregiver. I would like to see a person who is asking for that … first of all I would like the process to be friendly not confrontational and I’d like people to recognize what you’re doing is an honourable thing and that you should receive, that people are supported who choose to become in-home caregivers.

(Another caregiver, South Central Ontario) – And they should respect [that]… (Son caring for both parents living at home, South Central Ontario) – Exactly.

And it should be very clear-cut as to what is available. It’s not something that we have to fight for as I understand happens elsewhere. One of our case managers has an aunt whose story is almost identical to mine who lives in the U.K. and she said, my understanding is the financial support is the equivalent of $400 Canadian a week to people who choose to be an in-home caregiver. And it’s not just the money, as she said, it was just a given that in this position society supports them and this is what they get. And it was a friendly process you know.


(Wife caring for husband with early onset dementia, South Central Ontario) – You get a year’s paternity leave to take care of an infant. How come we don’t get a year’s…

(Focus Group Facilitator) – [seeking to clarify] OK, so the process should be friendly. The decision should be respected and honoured. Information about what’s available.

(Son caring for both parents living at home, South Central Ontario) – I shouldn’t have to do this in a sort of a fearful atmosphere right…I should have felt very comfortable and proud of what I was doing and … that was not the reception I received … I would like to see that happen.

(Wife caring for husband with dementia, South Central Ontario) – Well then you would need education in the workplace not only for yourself but for the man you’re talking to, the company that you’re talking to.

(Daughter caring for mother and father with dementia, South Central Ontario) – And it’s a lot of people not just companies you work for.

(Wife caring for husband with dementia, South Central Ontario) – But you’ve got to start somewhere.

(Daughter caring for mother and father with dementia, South Central Ontario) – People don’t know, people don’t know anything about it.

(Wife caring for husband with dementia, South Central Ontario) – Education is the answer there.

I would also say that more public awareness [is needed] … Especially for the related dementias like Pick’s Disease. I’ve met nurses who’ve never heard of it. Maybe people should do a documentary on it and put it on TV or something. I’m explaining it to everybody who asks me what’s wrong with him. Nobody seems to have ever heard of it. (Wife caring for husband with Pick’s Disease, Rural Ontario) Education for the public [is needed] too … Education just doesn’t start with the media. Education has to go into the schools. Not just grade four students which is great. The Alzheimer Society has a programme they go in to talk to grade four students but you’ve got to hit the high school students. These are people who are making decisions for their life. We need those people out there working for us. So there has to be, education has to be wide-spread, it just can’t be you know the odd report on the six o’clock news or the odd article in the newspaper. The media has to get out there and they have to get the message out. Everyone of us is going to face at some point in time a family member, if not ourselves, with dementia. And if we don’t get the education out now we don’t get the help started now twenty years from now we’re gonna be a lost cause… [My husband] was forty-six years old, he had Alzheimer’s Disease at forty-six years of age and they thought he was looking for an easy way out so he didn’t have to work. He had his own business for eighteen years. A man with grade six education had his own business for eighteen years, supported a wife and five kids, very independent and he’s gonna just give over his driver’s licence and the keys to his truck and let his wife take care of everything? And people thought he was putting it on. They still think he’s


putting it on. You tell me that’s fair. That’s why there’s a need for education. Alzheimer’s is … I’ve done a lot of talking any chance I get about this. There has to be more [public] education. (Wife caring for husband with early onset AD, South Eastern Ontario)

In my ideal world … [what] would be part of the high school career is that all students have to take a one semester course in health studies and a section would be set aside to specifically talk about seniors and illnesses including dementia. Because I’ve tried to do inter-generational in the … area with [the schools] and got turned down twice [by] the high schools. They have no interest, none. No call back, nothing. They’re just not into it. (Health Care Professional, South Western Ontario)

Summary of Overarching Theme #3: Public Awareness and Education for Service Providers

To summarise, caregivers and care providers raised concerns about the level of

education and training among many health care and support service providers. Given the unique challenges associated with dementia and the changing demands of care over the progression of the disease, it was generally agreed that all those working with persons with dementia and their caregivers should have basic training on dementia and dementia care. Educational initiatives designed to help physicians become more aware of support services and resources available to caregivers in the community also were seen to be important among the focus group participants. Furthermore, it was emphasised that a strong understanding of dementia and the stresses of providing on-going care for family members was needed so that care providers at all levels could be more sensitive to the experiences and challenges faced by many persons with dementia and their caregivers.

Related to education and training, participants recognised the need and value for on-going research on dementia and dementia care. However, they also stressed the importance of ensuring that the results of research be communicated to care providers and caregivers in order to keep them informed of best practices and help guide their decisions on changes to policies and procedures in the health care and community support system to more effectively meet the needs of both persons with dementia and their caregivers.

Finally, in order for caregivers of persons with dementia to develop and maintain both formal and informal support systems, caregivers and care providers perceived that greater public awareness of dementia and dementia care was needed. More specifically, increased education and awareness within the workplace was seen as a critical step to the development of workplace policies that better support employed caregivers in their caregiving roles.



CAREGIVER EMPOWERMENT AND WELL-BEING

The last overarching theme reflects issues identified by caregivers and supported by care providers related to caregiver empowerment and the maintenance of the health and well-being of all caregivers across the caregiving career. Specifically, this theme captures the importance of ensuring that caregivers are respected and valued for the important work that they do, but also that they have the support and resources they need – beyond community support services – to cope in their caregiving roles. The most critical issues related to caregiver empowerment and well-being identified by caregivers and care providers fit into three sub-themes: the importance of maintaining caregiver health and well-being, financial issues, and education and support issues. A. Importance of Maintaining Caregiver Health and Well-being

The stories shared by caregivers, and supported by care providers, highlight the significant impact that caregiving can have on caregivers’ physical and mental health. Many caregivers described how they often felt exhausted, both physically and mentally, in their roles. At the same time, they recognised that in order to continue to provide quality care to their loved ones with dementia, they themselves needed to remain healthy. The experiences shared by the caregivers illustrate the need for a focus on prevention and health promotion, and for the consideration of the caregiver’s health throughout the caregiving career, including continual monitoring of the caregiver’s situation as well as the ongoing status of the person with dementia over the progression of the disease.

Manys a time I’ve locked myself in the bathroom, not because I was afraid of what [my husband] might do but just to get away from the constant barrage… You know I mean that type of stuff is, so it’s very difficult, I’m very exhausted. My one daughter works on a cruise ship so she’s not home. My son and his wife are in [another city] as I say and they give as much support as they can, more than they should really with their condition. And my other daughter lives in [another city still] but she has three small children, five, three and one. So virtually I’m on my own and I’m getting very down, I’ve done more crying in the past two years than I ever thought I had in me. (Wife caring for husband with frontal temporal dementia, South Western Ontario) I haven’t had any peace of mind or rest for years. [My doctor] said I had a high rate of burnout, caregiver burnout and he said you can’t go on like this anymore. (Wife caring for husband with AD, South Western Ontario) See, I’m in a different situation because I have a mother that is the caregiver and what my concern was I was more worried about her because I saw her going downhill and there’s, we need more support in having people either


coming once a month and checking on the caregiver because the caregiver puts themselves last…And so we need more support for the caregivers to watch [their status] because they don’t understand, they don’t realize that they’re going downhill. They say I’m coping, I am coping but they don’t realize it and you hear so many stories that the caregiver dies before the actual Alzheimer patient. (Daughter caring for father with AD, Rural Ontario)

I would like to see there be some way, the way it is now the person with dementia … is assessed and it’s decided what services they need. I’d like to see it where the caregiver where someone, a professional met, with the caregiver so that they could say you’re dealing with too much stress. If somebody could tell you that and say you need a break, you have to take this time, you need… Someone with some skills who could assess the caregiver’s needs. That’s sort of what I do over the phone with my mom. I think you don’t sound very good. I can tell as soon as I talk to her on the phone whether it’s a good day or a bad day and I can say yeah we better get you out today. So if that was available for caregivers I think that would give them the confidence to say yeah. And my mom said sometimes just having somebody say, “What you’re doing is really, really, really hard. This is the hardest thing you’re ever going to do in your life.” Just having somebody tell you that makes you feel so much better. (Daughter caring for father with dementia, Northern Ontario) Again, speaking from my own experiences as a caregiver, a spousal caregiver can rapidly become over stressed and this leads to complete frustration. It takes a very strong willed person to step aside and review the overall picture, to re-adjust his thoughts and capabilities and regain new vitality, with the daily pattern changes of a person with dementia, especially FTD [frontal temporal dementia], in order to accept the new and additional responsibilities cast upon him. From my experience, the home support workers are not equipped to recognise the ability or the inability of a caregiver to manage his or her stress limits. Therefore, I would suggest that more frequent contact of a professional in this area to keep in touch or make personal visits to the residence of the caregiver. This person should be equipped to recognise stress levels and their effects on the caregiver and be able to recommend and make changes to the support services, at an early stage, to avoid a possible disaster. (Husband caring for wife with frontal temporal dementia, South Eastern Ontario)

One of my fears is if and when I have to place my husband in a home I feel that nobody can take as good care of him as me. But as my health is deteriorating and my care for him is going to deteriorate for him also. So I want to make sure that my husband is going to have the best possible care available. … I don’t want him to do without anything. I want to make sure he’s well so that I can in turn regain my health and be able to on some parts still be able to look after him when he’s in a nursing home. I don’t know it’s a difficult situation. You know there’s a problem there. (Wife caring for husband with early onset AD, South Eastern Ontario)


Because what happens is you see a lot of times the caregiver looking after their husband or wife and they’re the ones that die first because they’re so burnt out they get sick. So it’s important that physicians look in on them too. (Health Care Professional, Rural Ontario) Maybe in the community at large we should have a stronger focus on prevention and health promotion rather than [waiting for] a crisis to occur, [and then] deal with it. (Health Planner, South Eastern Ontario)

B. Financial Issues

Caregivers stressed that an important part of empowering caregivers and maintaining or enhancing caregiver well-being involves ensuring that the caregiving role is valued and that the caregiver and persons with dementia are treated with respect and dignity. Critical to valuing the caregiving role was recognising the financial strains of caring for a person with dementia and providing adequate financial compensation for the work that caregivers do. Caregivers described the financial burdens they experienced in trying to keep their loved ones at home for as long as possible.

There was general agreement among the focus group participants in the need for

caregiver compensation, whether it be through caregiver tax credits, caregiver subsidies, direct payment for care provided, and/or accommodation and travel grants to cover costs for those who have to travel a distance to received services and care. Caregivers also described the costs of services and emphasised the need for more affordable services. Some caregivers recommended individualised or direct funding for caregivers so they themselves could manage the changing care needs of their person with dementia as the disease progressed.

Finally, caregivers talked about the additional challenges faced by those caregivers

who leave employment to provide full-time care to their person with dementia. Caregivers emphasised the need for caregiver job and benefit protection and for adequate caregiver leave policies for those who need to leave their jobs for a time to provide care. 1. Caregiver compensation needed (e.g., caregiver tax credits; caregiver subsidies to pay for

needed equipment, medications, and other needed caregiving supplies; direct payment for care; and accommodation/travel grants to cover costs if have to travel a distance to receive services/care)

(Daughter caring for mother with dementia, Northern Ontario) – If you were

taking care of a child who had an infirmity you would … get grants for or you could apply for equipment to move because I have relatives who do have children and they can’t, you know, they can’t believe the difference between taking care of a child and what’s available and then if you’re taking care of a parent or a spouse that’s elderly those things don’t exist. I mean especially… you know trying to get things through, say through [non-profit organisation], if you wanted a wheelchair. Lots of times with dementia how they look at it is you could walk your brain


just doesn’t tell your feet to move so it’s not that you can’t walk any more so you don’t get the wheelchair…

(Focus group Facilitator) – [seeking to clarify] So you’re talking about funding or grants?

(Same daughter caring for mother with dementia, Northern Ontario) – Well I would think yeah funding and grants for equipment for…all the equipment you have to, yeah…And those things too, some things are provided through CCAC or whatever like supplies or whatever, if you qualify or the person that you’re taking care of qualifies. But there’s so many other things that you purchase on a regular basis like supplies, enormous the cost of those type of things.

(Sister supporting a sister who is caring for her husband with dementia,

Northern Ontario) – When my sister has to go [out of the area for services], five and half hours away, she can’t go there and back again in the same day. Is there a place in that area where she could stay overnight if there were no relatives there? Right now I have a cousin that’s there and she stays with my cousin but if there wasn’t my cousin to depend upon does she have to stay at a motel? Is that her responsibility…?

(Adult son caring for mother, father, and mother-in-law, all with dementia, Northern Ontario) – Travelling grants.

…when they tried him on the Aricept [it] wasn’t covered by the Ontario Government. I had to get the bus to [the nearby community] four times in six months to pick up pills at the doctor’s office [there]. It then cost me $32 to get back and forth to get free pills. Every dollar means something when you’re living on $978, we lived on that every month, four adults, my two sons, my husband and I and our rent is $750 a month. That’s it and no matter how many times we went and asked for help, did anything, no one listened. And because he was so young there was this big thing you know you couldn’t get a doctor to listen to you… Until we get better funding brought in to either provide a wage for the caregiver so that they can stay home and do this properly… The caregiver needs to be provided with a legitimate wage and drug benefits! … I could’ve gone back to work twice in the last five years and I can’t give up the drug benefits the Ontario Government gives me. We don’t get any money from them but they pay for his drugs… I can’t go back to work and jeopardize three to six months waiting for a drug (person sounds emotionally overcome) form to come in, I don’t, I can’t do that he needs those drugs now. (Wife caring for husband with early onset dementia, South Central Ontario)

My husband’s pension is under eighteen hundred dollars a month for five of us. Now if he goes into a nursing home I have his pension for three months… Now my health is already going downhill because of the stress that we’re under and how am I going to be able to pay the bills? Because I don’t have the ability right now to get out to have any training. There’s no job available for me. I’m going to end up losing our home, you know, be further and further in debt. And that’s what I’m talking about financial aid, there’s not enough


financial help for his care. (Wife caring for husband with early onset dementia, South Eastern Ontario) (Wife caring for husband with dementia, Central Ontario) – I had a suggestion

made to me the other day. They said why don’t you caregivers, twenty-four hour a day caregivers, get paid something for caregiving. Why isn’t that in the programme. Is that the wrong thing to bring up?…

(Focus Group Facilitator) – [seeking to clarify] So payment for caregivers? (Same wife caring for husband with dementia, Central Ontario) – Well

everyone else who looks after them has to be paid how about the person that’s stuck there all the time.

(Husband caring for wife with dementia, Central Ontario) – Twenty-four hours a day, put them in the same problems as mothers…

(Daughter caring for mother with dementia, Central Ontario) – I had to retire early to care for my mom and dad so I think that there should be.

(Same wife caring for husband with dementia, Central Ontario) – And I had to sell a business to care for my husband so same idea.

(Focus Group Facilitator) – [seeking to clarify] So it’s a compensation of some sort?

(Same wife caring for husband with dementia, Central Ontario) – So the money just stops coming in right?

(Same daughter caring for mother with dementia, Central Ontario) – Or your pension’s reduced because you have to retire early.

(Another husband caring for wife with dementia, Central Ontario) – [There’s] all kinds of penalties.

(Same wife caring for husband with dementia, Central Ontario) – Penalties for someone you love.

And I also feel that because in my own situation, we’re not retirement age, I’ve had to stop work and we don’t qualify for anything [like] CPP, long-term disability, old age pension. The government should give a caregiver’s allowance… Because that’s our job. We should be aware of the fact that we’re not contributing to CPP we’re not going to be able to collect it you know when we might need to. The government really needs to wisen up and treat us as people with jobs. (Wife caring for husband with Pick’s Disease, Rural Ontario) Financial allowance for caregivers [is needed]. The government should recognise that caregiving is a 24/7 job, and that we caregivers have sacrificed years of our lives to caring for our loved ones in trying to keep them out of nursing homes for as long as possible. There are government programmes for everything else, for example, pregnancy leave, welfare, disability, employment insurance, etc. I do not mean a tax credit on income tax. If the caregiver and patient have no income, this would be senseless. I mean in the form of a monthly cheque, and not contingent upon assets. My husband is 49, is not eligible for CPP, CPP disability, welfare, or old age pension. And I, as his full-time caregiver, am not able to earn a living thus not able to contribute to CPP. If I would become disabled, I would not likely be able to collect CPP disability either as I have not been contributing to it! We should not have to eat


up our savings so quickly. I am 47 years old and also have a dual-diagnosed handicapped son at home who is 21. (Wife caring for husband with early onset dementia, South Central Ontario)

And more and more in the last year I have seen women who are leaving the workforce to care for usually older parents. What is very badly missing is some kind of a caregiver benefit, like we have maternity benefit, we have paternity benefit and it’s the females that are being marginalized because they need to leave their employment … it’s missing and to me a caregiver benefit, some recognition in a system that these people are doing a service. They’re saving the government money and they need to be recognized financially particularly as I said females who are being further marginalized by the fact of their gender and by the fact of their responsibility as a caregiver in the family. (Health Care Professional, Large Urban)

2. Concern regarding cost of care, particularly services/programmes, for some caregivers

and the need for affordable services

We did have my mom five years ago with a homemaker at night. It’s also very, very expensive. Very, very expensive… what I’m saying is if you don’t have money honey, you can go through hundreds and hundreds for every shift day and night, day and night and sometimes you need extra care. Like if the hospital staff, it’s not always good enough. Now I’m not going to get into hospitals but if you need [hospital care], it’s just expensive. (Daughter caring for mother with AD, Large Urban)

(Daughter caring for mother with dementia, South Central Ontario) – I was at

the max with the homemakers and the [visiting nurse] would come in and respite care and it still wasn’t enough because I’m on my own and have three girls and they’re young. So it was, no family, nobody else around. I didn’t want to place her but I had to because I was burning out and so I just thought there’s got to be more services but unless you have money… But I felt that the services, that there’s gotta be more. Them saying no you’re at the max, you’ve got the homemakers at the max, the [visiting nurse], everything. So like I said, if you don’t have money then you have no other alternative then to…

(Focus Group Facilitator) – [seeking to clarify] There needs to be money for the individual caregiver?

(Same daughter caring for mother with dementia, South Central Ontario) – Money to, maybe try to get more, more…services, exactly… Because I would’ve kept her at home as long as I could.

It’s got to be financially feasible. Like I couldn’t afford fifty or sixty or a hundred dollars a day to put my husband in a home so I could go away for a week for a respite. I couldn’t afford to go on the trip then, it doesn’t make sense…When you’re living on a disability pension and you don’t have very much money to begin with you can’t afford to pay even twenty-seven dollars a


day for them to be looked after and still have money to be able to go someplace and get a break from everything. That’s the part that bothers me. They offer stuff but by the time you pay for their care you have nothing left… the care has to be affordable. If we have to pay a portion of it, it has to be affordable to low income families. You know rich people shouldn’t just have all the breaks and have all the best things. It’s gotta be fair for everybody because a rich person who gets Alzheimer’s Disease and a person who’s poor gets Alzheimer’s Disease they’re both going through the same thing. One can’t be treated better than the other so it has to be a fair system. (Wife caring for husband with early onset dementia, South Eastern Ontario)

In our facilities the family and patient pay for the sitters, we don’t. So that’s a very high cost for most families or patients. The hospital does not pay for sitters, that’s our policy. So if the family have to reimburse [the hospital] for that cost it’s devastating sometimes when you’re talking about you know fourteen days in a row, all night long, eight hours a night. (Health Planner, South Eastern Ontario) There’s another issue [and it] is funding for the caregiver. That has never been recognized. Most dual income families go down to one income. They’ve lost an income. They might get a little bit for assistance for the client themselves but they’re not paid as a caregiver, they’re not recognized as a formal caregiver…And it probably would allow them to stay in the home a lot more but the financial constraints are in the way. (Health Care Professional, South Eastern Ontario)

(Health Care Professional, South Central Ontario) – I find another influencing

factor why they won’t use the formal community support services, when I see people they’ll access our services through CCAC but they won’t access the other services because of the cost factor. (group agreement) … A caregiver would rather be overwhelmed with stress than pay the $20 a day. (group agreement)

(Another Health Care Professional, South Central Ontario) – One service might cost $20 a day, but then there may be multiple services, so there’s $20 a day to attend day programme, then there’s $10 a day to have respite, and then there’s all of the supplies and before you know it what appears to be quite manageable cost for my programme, add that on to all of the other services and it really does become quite unmanageable…

Services need to be affordable [and] right at the moment it’s very expensive…Yeah I mean the cost there, purchasing service and there’s no tax break, they don’t even get a tax break on it. (Health Care Professional, Large Urban)

3. Need for self-directed funding options for the caregiver so that caregivers can

manage/direct care based on their needs and the needs of their relative with dementia


Maybe there could be funding available so you [the caregiver] could choose who you wanted it to be [to provide care]… that might make it a little bit easier for [caregivers] if there was money available for the person to choose their own care [provider]. (Daughter caring for mother with dementia, Northern Ontario) … there is a programme out there right now for the one, the physically disabled mentally alert person to get funding through the government to manage their own care, hire privately and do whatever they need. But it’s not available to the [person with dementia] because they can’t co-ordinate themselves even though they have a caregiver. So if that funding could be available to the caregiver it would help out also with the respite services and everything else. So there’s funding there for the one but not for the other. (Health Care Professional, South Eastern Ontario)

(Health Care Professional, Central Ontario) – …maybe give the caregiver their

respite grant for the year and they could use it as they please. (Another Health Care Professional, Central Ontario) – Sometimes that’s called

individualized funding…and they can purchase their own service. (First Health Care Professional, Central Ontario) – Direct funding… (Focus Group Facilitator) – [seeking to clarify] Oh, so direct funding for all

services, to purchase any service not just respite… ? (Another Health Care Professional, Central Ontario) – The caregiver is

responsible here folks. Let’s let them decide. (Second Health Care Professional, Central Ontario) – They know their needs… (Third Health Care Professional, Central Ontario) – Let’s give them that

respect that they’re responsible enough to make this decision and know what it is.

4. Need for caregiver job, pension, and benefit protection and adequate caregiver leave

policies, or other alternatives such as working from home for those who need to be at home to provide care, particularly those who leave their jobs for a time to provide care

(Son caring for both parents in the home, South Central Ontario) – I’ve been

doing this for one year now. I’ve been looking after both parents at home who both have very high level of care [needs]. And I was handling the situation reasonably well, I thought, until two months ago when I applied to have my leave which is totally unpaid. There’s no financial commitment at all from the company and your job isn’t held. The only agreement is that you go back to a job that’s the only thing. On the doctor’s advice I asked for another twelve months off and they said no and I decided to fight. And that is when, that’s what pushed me over the edge. That was just terrible. You feel so alone… You feel so isolated you know against this huge corporation and who do you turn to? And I phoned, you just do the best you can on whatever information you have and actually just this morning I was paying my labour


lawyer’s bill in relation to the past two months and again although it’s such a new area, caregiver job protection, that I couldn’t find any lawyer who was expert in that one area…I phoned the senator responsible for palliative care and I phoned a lot of people. In the end I ended up going to the Ombudsman’s Office and that seems to be what’s made the difference. And I won in the sense that I got the extension but the bad news is that I’ve been made aware that they’re not happy and it looks like this will not be soon forgotten when this twelve months is over. So it looks like I’m going to pay for just trying to do the right thing.

(Another caregiver, South Central Ontario) – Punished. (Son caring for both parents in the home, South Central Ontario) – Yeah,

exactly. And they’ve got my number and I was just supposed to go away and quit …

(Wife caring for husband with early onset dementia, South Central Ontario) – And most people do go away and quit!

(Son caring for both parents in the home, South Central Ontario) – And I am not some, and this was really hard on me because I’m not somebody who has done this in the past you know I’m, the only time I ever dealt with a lawyer in my life was when I bought my condo. That was the one time. And it was very stressful. But you know when you’re convinced about the rightness of what you’re doing and you find the courage. But I would like to see the next person not have to go through what I went through… And we’re, I mean we’re already, for a long time we’ve been at our max for support. I mean if I wasn’t back, if I hadn’t moved back to the family home and left my job, there’s no way that both parents would still be at home. I mean just last week now I had to hire a private caregiver for as many hours as we can afford because we’re living on savings now so. So yes if those two things like legal advice specific to caregiver job protection and that we should be supported financially to some extent. … even if it’s symbolic, I would appreciate that just so we know that we’re appreciated. That what we’re doing is recognized by the society we have to live in. (group agreement)

I happen to be very lucky I work from home, my employer’s letting me work from home so I can look after my mom and still be employed full-time. But had that not happened, I mean, we had homemakers in during business hours, five days a week and you know at that time it was like about three thousand dollars a month. Like this is what also propels older people into places because not only the quality care, the extent of the care that’s required but also the, it’s very expensive, the cost. (Daughter caring for mother with AD, Large Urban) (Health Care Professional, Large Urban) – That’s what my focus is on,

someone who has to take a couple of years say during the deterioration of their loved one and doing without financial compensation. The impact is immediate and the impact is long-term because there’s two years of pensionable earnings that aren’t sitting there


(Another Health Care Professional, Large Urban) – And no guarantee of employment.

(First Health Care Professional, Large Urban) – And no guarantee of return employment as you’re aging.

C. Education and Support Issues 1. Education and training for caregivers, persons with dementia, and family members

throughout the disease process

Caregivers and care providers talked about the education and training needed for caregivers, persons with dementia, and family members throughout the disease process. More specifically, information and training was needed on dementia in general, on how to deal with challenging behaviours, on stress management and coping techniques, and on how to provide a safe and healthy environment for the person with dementia. Better strategies were also needed to better communicate to caregivers what services are available and how best to access those services. Some caregivers and care providers recommended the development of a resource directory for caregivers in all communities that lists all of the support services and resources available, provides clear information on how to access needed services and resources, and provides a list of emergency contact numbers (e.g., a 24 hour emergency help-line).

I think caregivers [the family] need to be taught about Alzheimer disease. In my particular case, they were not knowledgeable at all and didn’t have, they had no idea how to help and the frustration level would get so bad that it was hard on everyone. (Close friend caring for person with AD, Rural Ontario) (Daughter caring for mother with dementia, Central Ontario) – I also think that

family members need better education. My children were very nervous staying with my mother because they didn’t know what to expect.

(Focus Group Facilitator) – [seeking to clarify] So regarding what the disease process is, what behaviour they might…?

(Same daughter caring for mother with dementia, Central Ontario) – And what’s safe and what isn’t. Even though they’re in their early thirties now, I would go out and sometimes I would come home and they would say I didn’t know what to do because mom got into the bathtub and I didn’t know whether to leave her there or to get her out. So I thought we have to educate them too.

(Wife caring for husband with dementia, Central Ontario) – But you don’t have enough energy to educate everybody when you’re doing the job, right. Eventually it wears out…

(Second wife caring for husband with dementia, Central Ontario) – Going to [the Alzheimer Society Chapter for] the education there, when you’re first informed your spouse or whoever has got Alzheimer’s. The specialist says join the Alzheimer’s [Society because they’ve] got excellent information [on] exactly what to expect from the Alzheimer


patient. So this should be included for everyone who first finds out that their spouse or parent or whatever has Alzheimer’s.

(Focus Group Facilitator) – [seeking to clarify] So information about the Alzheimer Society?

(Second wife caring for husband with dementia, Central Ontario) – That as well as the disease itself and what things to expect.

(Focus Group Facilitator) – [seeking to clarify] So, is that a role of the physician? Is that again going back to the role of the doctor in providing that immediate?

(Second wife caring for husband with dementia, Central Ontario) – Uh, it could be or like I say, we had this first, or early stages group there at the Alzheimer’s [Society] and there you really found out what was involved with Alzheimer’s and that. But someplace we should have some sort of an education thing, what is Alzheimer’s.

I would think too that if someone from the CCAC or the Alzheimer Society would even come in and talk to the family. Like we live in a family situation and I don’t think they understand how much stress the caregiver’s under. (Wife caring for husband with AD, South Western Ontario) It’s the teenagers I still have at home that are the problem and difficulty getting them to understand that dad’s not dad the way he was five, six, seven years ago. Dad has changed and they have to understand that they can’t be the way they want to be. Life is not going to be the way they want it to be right now. (Wife caring for husband with early onset dementia, South Eastern Ontario)

(Wife caring for husband with AD, South Western Ontario) – Caregivers need

to know how to provide a healthy environment for the people like exercise, … amusements, things that we could [do], options that we’d have for the clients plus yourself [the caregiver] you know… I know something else we should have. We should have stress management. And also [information on] how your stress works on the client. Because I see that every time I’m, like I went and put him in [respite] for the weekend. [I was] so hyper by the time he went that we had a terrible night the night before because he picks up on my stress… If I had better control of myself, better coping strategies maybe I could keep myself calmer and help him out.

(Wife caring for husband with frontal temporal dementia, South Western Ontario) – You’ve hit the nail on the head, you hit the nail, stress management and coping strategies.

It seems to me that caregivers are given a lot of information, again in a group setting, about general caregiving issues, dealing with difficult behaviour, supporting their relative to stay at home, to approaching their care in a certain way. But it’s often in a very generalized group format and it seems to me there’s a gap in terms of more individual teaching for caregivers related to their specific relative and in the home situation. So that there’s that again


hands-on milieu, teaching and again what you’re doing is building on the strength of the caregiver who knows the client the best and wants to be helpful and not feel defeated and not feel helpless so using professionals and even other caregivers who’ve been successful in a more individualized approach. (Health Care Professional, South Eastern Ontario) (Health Care Professional, Large Urban) – If we’re going to plan something

from the caregiver’s point of view one of the questions I ask at every education session individually and anonymously I have them fill it out, “What do you find most difficult about caregiving?” The most common theme is time – time for myself, time for all the things for me to be doing, to be done. The second thing is stress reduction. The third thing is communication techniques. So whatever model of service that’s ideally provided needs to come with those three because they are the top three.

(Another Health Care Professional, Large Urban) – [You need] someone who knows this person, who knows the illness, who can work with them in terms of how to manage the difficult behaviours, how to do that.

I have been the principal caregiver for approximately 5 years. I use no outside help BUT I’m reaching the stage where I know I need to ask for more support. At this point I know ‘not much’ about what support is available. So I suggest more education is needed, speaking with the social worker, printed materials, and so forth. (Caregiver, South Central Ontario) But I think also that [we need to] put packages [together]. Improve communication, communicating to the public [caregivers] what services are provided to us for this disease. (Daughter caring for father with AD, Rural Ontario) It would also be kind of nice if we had a kind of a little booklet that could be given to anybody who has a diagnosis of Alzheimer’s or dementia of some kind and they’d say in Ontario this is what you do and you would go through it… because you really don’t know where to start sometimes…And that booklet would be explaining what is available. So you know what the [nursing agencies] do and what the [criteria are]. (Wife caring for husband with dementia, Large Urban)

(Daughter-in-law caring for mother-in-law with dementia, South Western

Ontario) – So I know in talking to another friend who’s getting into the same situation now with her mom and dad, [she] had no idea that these programmes were available so I’m conveying [that] to her now. But I think a lot of people just don’t know what’s out there and don’t know where to start.

(Wife caring for husband with frontal temporal dementia, South Western Ontario) – Something else that they really need even now is to have some sort… a manual or a handbook that could be handed out to all


their caregivers… And say if you need help you have all these different things. Like not just the typical things but other things.

(Daughter-in-law caring for mother-in-law with dementia, South Western Ontario) – …A manual would be really good just for simple things, medical things you know for different things.

(Wife caring for husband with AD, South Western Ontario) – But a manual that just sort of walks you through and it may not be the things you have now but it could be ten years down the road… that is what you’re going to deal with, here are maybe some of the problems.

I just thought that when someone has a diagnosis of diabetes for instance, newly diagnosed with having diabetes they more or less automatically, not 100 per cent, but for the most part they’re referred further by the physician to either the diabetic education centre or if they’re not able to go themselves to CCAC who provide in-home education and such. And I’m just wondering when someone first has this diagnosis of dementia or whatever, that wherever they enter, wherever they get the diagnosis, presumably at the doctor’s office actually or maybe in hospital, but automatically that might sort of send them on to some kind of education centre. Now they certainly would be able to refuse that if they didn’t want it but it would ensure then that the [family] unit was being educated, at least knew what was available, at least knew something about the problem and the disease and the prognosis. And included in that package of course would be what was available in the community. (Health Care Professional, Rural Ontario) That was going to be my big one too. Education in general terms, … be it follow-up, be it just letting people out there know. Like you said you can’t advertise. And the number of people who’ve called and said, “Oh you have a day away programme. Well how do I get in touch?” Well you have to call CCAC. “Well what’s CCAC?” “Oh, okay, well here we’ll get you the number and this is who you’re gonna need to talk to…” The number of people that don’t know because of that. That needs to change, that really needs to change. (Health Care Professional, South Western Ontario)

2. Caregivers and care providers also talked about the need for caregiver advocates or

mentors who could be available to caregivers throughout the caregiving career.

(Daughter caring for father with AD, Rural Ontario) – When you’re talking about the whole community support system can we include long-term care facilities because we’ve had a very bad experience with one and it seems to me that it could have rather easily been remedied if this facility just had a social worker on staff. I think there needs to be a social worker on staff at each long-term care facility even if they’re only there one day a week you know it wouldn’t have to be a full-time position. But someone who could act as a patient and family advocate because right now it falls on the family to do it all. It’s very difficult for the family to do it. (group agreement) They don’t know how to go about


it. If there were a social worker there at least one day a week who could work on your behalf, advocating for your patient, your family, it would be of great benefit…

(Daughter caring for mother with dementia, Rural Ontario) – I think it’s important [that] every group have an advocate. I really [do]. I think an advocate can be our voice when we can’t speak and I think it’s very important. And I think that people listen to advocates. I worked in the social system and I just am a real believer that advocates work.

(Focus Group Facilitator) – Right. How would you see that working? (Same daughter caring for mother with dementia, Rural Ontario) – Well taking

our concerns to someone. You know for you and I to phone our M.P. you might as well, you know, spit in the wind. But get an advocate with enough people behind them and look at us in this room alone. And we’re like a minute group of us. You know with that kind of force, and advocates are taught how to advocate. I think it’s very, I think it’s one real way of change and of people stopping and listening.

(Wife caring for husband with early onset dementia, South Central Ontario) –

We need an advocate’s office that’s what we need…The Alzheimer’s Society is wonderful and I love the girls and without them we never would have been able to manage, but for persons that are younger that are left with no income, if there would’ve been one centralized office that I could’ve went in to find out about programmes or to get somebody that knew what dementia was to work with me to get that pension through. We should’ve had the pension in 1993. We got it in 2002.

(Son caring for both parents in the home, South Central Ontario) – Yes, and I mean this is as I’ve often said, the people who paid the price for the last two months were the people that had the need for the care. Because how can you fight on both fronts at the same time? Try to be a caregiver and then take on these huge organizations?

(Health Care Professional, Central Ontario) – And there are people who live

further away, the caregiver lives three cities away and I think that those people are poorly served in the community because they have nobody to advocate for them.

(Another Health Care Professional, Central Ontario) – No one’s advocating for them.

3. Inclusion of caregivers and persons with dementia in the creation of policies and in

decision-making

Central to empowering persons with dementia and their caregivers was to include them in the creation of policies and in the decision-making process. More specifically, caregivers want care providers to listen to them, respect their wishes regarding care, and support their choices for home care or long-term care placement.


Could I just add … the need for family input. Like listening to the caregivers in terms of, informing decisions around any kind of care needed. [The] CCAC will send out their supervisors from time-to-time and not call me, [and will] just go see my mother. Well that’s going to be pretty limited and in fact she’ll probably say everything’s fine and I don’t need anything. Well gee that’s useful…So like listen. (Daughter caring for mother with dementia, Large Urban)

(Husband caring for wife with dementia, Large Urban) – One of the key

elements is this policy [referring to new policy on waiting lists for long-term care placement] was implemented with virtually no consultation with the public at large…And as I understand it from [the agency] that there was only like two or three hours of consultation, a few weeks before it was actually announced…And so they’re sort of dancing the sabre dance to try and get the thing implemented May 1st and they’ve got all these orientation sessions trying to introduce it to everybody on a sporadic basis. So they’re now fully occupied with implementing a procedure that came on from the revised legislation implemented by the government without consultation processes.

(Focus Group Faciliator) – [seeking to clarify] So consultation process [with caregivers] is something that should be in place?

(Same husband caring for wife with dementia, Large Urban) – Well absolutely. I would think one thing too is when you make the choice, whether to keep them at home or to have someone go into a facility, that whatever choice you make as a family or as a spouse then that is supported. And lots of times [it’s not]. (Daughter caring for mother with AD, Northern Ontario)

We’ve also heard from a lot of individuals with the disease who feel that their voice isn’t being heard and that they’re not being listened to in terms of what they need and the types of services they would like… everything from the fact that the doctor the minute they’re diagnosed stops talking to them and automatically talks to their family member even though [they’re] very, very able to make the decisions for themselves. They’re just automatically ignored. (Health Care Professional, Large Urban) I’d like to add just one last thing. We had a focus group day a few weeks ago… and in two groups that I was in, caregivers made very strong comments such as “they [care providers] just wouldn’t listen to me,” “they wouldn’t listen to me, they wouldn’t pay attention to what I was saying.” And I guess in terms of improvement we’d all say that we’re very sensitive and our whole professional development is in positive and good listening skills but somehow we need to improve on that because that’s the feedback that we’re getting from caregivers. (Health Care Professional, South Eastern Ontario)


4. On-going support for caregivers and their families throughout the progression of the disease

Caregivers and care providers also emphasised that caregivers and their families need

support in their roles throughout the progression of the disease including after placement in long-term care or the death of the person with dementia. Family members, supported by care providers, specifically recommended: community support groups for caregivers and their families held on a variety of days and times, and made available across the caregiving career; accessible counselling services for caregivers and their families; and an emergency 24-hour help-line or support line for caregivers. It was also emphasised that those caregivers who do not have family or other informal community support networks in place may need help with the development of informal social support networks.

And I think even if it’s for the younger [family members] because I find this with my daughter who’s seventeen, I talked about going to a support group. Her first instinct was, “I don’t need to go to a support group.” And I said, “Well it would probably be good” because this is just new for myself and so now I’m having her sister try and talk to her. … If they have some programmes like that it would just sort of make it more acceptable to them. (Daughter-in-law caring for mother-in-law with AD, South Western Ontario) You know, you need a Help Line, I think that’s what, I can’t think of a better word for it – an emergency Help Line. (Wife caring for husband with dementia, South Central Ontario). The Alzheimer’s Support groups, we have one in [our community] which is just great and I couldn’t get through the month without it. But it’s in the daytime and I’m sure there are lots of people that would be able to come out at night who aren’t getting out at all because it’s in the daytime… And also some kind of counselling service for other family members who are trying to deal with this, like in the case of my son who has a lot of emotional problems connected with this. I’ve been trying very hard to get counselling for him and it’s quite hard, a hard thing to do. (Wife caring for husband with early onset Pick’s Disease, Rural Ontario)

(Wife caring for husband with AD, South Western Ontario) – How about a

volunteer phone number that people could call, phone up. Like suppose if you phoned me I could tell you because I’ve been in it ten years. I might be able to give you some help with things that you could do. …I wouldn’t mind giving my phone number out. Yeah like a help line…

(Wife caring for husband with frontal temporal dementia, South Western Ontario) – Or a buddy system.

(Health Care Professional, South Western Ontario) – Something keeps rolling

around in my mind from time-to-time, what happens after you spend this intense caregiving time and you just put all your energies into a fifty, sixty year relationship [and] that’s just gone. Who sees those


people? Do they just fade into the woodwork? Could there be any kind of follow-up procedure?

(Another Health Care Professional, South Western Ontario) – Definitely we need the follow-up. We have the support group ready for them, the counsellor and everything, but we can’t get anyone to go to it because I think we lose them after the death of the person and they just slip away and there’s not that link again with them. And it all goes back to the first questions [and] the answers – they don’t think they really need it. How many people go to grief counselling?

(Third Health Care Professional, South Western Ontario) – It’s interesting, we fund it for people who have died of cancer. We do a bereavement visit but if you lose a husband and he’s been on service and he’s had dementia we don’t do the same.

(Daughter caring for both parents with dementia, South Eastern Ontario) – And

even if I just am having a terrible week or day or whatever I can call [name of support person] and if she’s available she’ll listen to me for an hour and a half ranting on and on and on. But I think caregivers themselves need some care… You really do need somebody even if it’s not that they’re going to help you but if they just want to listen…You just want to go on and on and say ‘Oh Jeez’… You really do need to do that on occasion.

(Focus Group Facilitator) – [seeking to clarify] Someone to listen to you? (Same daughter caring for both parents, South Eastern Ontario) – Yeah, even

though you’re not expecting that person to give you an immediate quick fix answer but you just need sometimes to get it out.

And I think this transition thing that [was] spoke of earlier, I think how traumatic it is for people to anticipate, to experience placement. We know when people are going to be coming up to placement and yet we could work together. I think of the in-home admissions people working with CCAC, the Alzheimer Society, community programmes, to offer education, support, an increased comfort level that will better prepare people for that inevitable permanent placement that many people fear so, really fear. (Health Care Professional, South Central Ontario) And I would even like to question why it stops at death or placement because the caregiver still has needs at that point. And we are talking about caregivers here, bereavement support as well. I would say after… After death and placement. (Health Care Professional, Large Urban) (Health Care Professional, Rural Ontario) – I was thinking more along the lines

of some end of life issues and one thing that I don’t believe is in place, or well enough in place, is the ability of the formal support services to extend their support beyond the institutionalisation of the loved one, or even beyond when that person passes away. I’ll give the example of what formerly was known as a bereavement visit in terms of the community nursing service – the person would pass away and the nurse


would be allotted one additional visit…And the caregiver is left and I’ve had many caregivers say when my wife or my husband or my mother, my father, whomever the person was, was here I had this agency and that agency and I had all of these people who were part of this formalized and informalized support network. And then with the placement or loss of that individual the system isn’t funded beyond that spot and so it just kind of drops, or they perceive that it drops anyways and they’re not sure how to tie into the next part of the system…Or if there is a next part.

(Another Health Care Professional, Rural Ontario) – And to build on that, caregivers because we support them when they’re in the day programme. Once the person has gone into long-term care they need a different type of support and I know some facilities have a support or some type of support group for the caregivers. But they really need that to talk through the issues of placement and what happens in the facility, something.

Summary of Overarching Theme #4: Caregiver Empowerment and Well-Being

To summarise, in most cases, caregivers of persons with dementia want to continue to

provide care for their loved ones in the community for as long as possible. However, in order to cope in those roles over time, caregivers need supports and initiatives that help empower them in their roles and ensure their health and well-being are maintained across the caregiving career.

Caregivers feel that the work they do in their caregiving roles is often not respected

nor valued. This perception is linked to the lack of financial compensation caregivers receive for the caregiving work they perform. Other caregivers described the significant financial strains they have experienced in attempting to provide care for their loved ones in the community. A number of compensation options for caregivers were suggested by the focus group participants to help ease the financial burden of care, such as: (a) providing caregiver tax credits, (b) caregiver subsidies to pay for needed equipment and medications, (c) travel grants for those who have to travel a distance to obtain services, and (d) direct payment to caregivers for care provided. In addition, caregivers described their concerns regarding the cost of support services and programmes and emphasised the need for affordable services. Providing self-directed funding options for caregivers so that they can manage their own services and programmes based on the changing needs of their loved ones was also recommended as an important step in empowering family caregivers and better meeting their individualised needs. Caregiver job, pension, and benefit protection as well as adequate caregiver leave policies, were also seen to be important in helping caregivers maintain their persons with dementia in the community as long as possible, particularly for those who leave their jobs for a time to provide 24-hour care.

Caregivers also emphasised – and were supported by care providers – the need for education and training and on-going support throughout the disease process, including after moving a person with dementia into a long-term care facility. Caregivers needed information


about dementia, the disease process, and how to manage challenging behaviours, but they also recommended information and training opportunities to help caregivers themselves cope more effectively in their roles (e.g., sessions on stress management and on effective use of coping strategies).

The need for better strategies for making caregivers more aware of the services and

programmes available and how to access those services also was emphasised by the focus group participants. The development of a resource directory in every community was seen as an effective way to inform caregivers of the range of programmes and services available to them. In terms of on-going support for caregivers, the participants suggested making advocates or mentors available to caregivers across their caregiving careers. The provision of a range of other programmes were recommended as means of meeting the emotional needs of caregivers and their families, including: (a) community support groups for caregivers and their family members held at a range of days and times, and designed in such a way to meet the changing needs of caregivers, (b) accessible counselling services for caregivers and their families, and (c) the development of an emergency 24-hour, caregiver help-line.

Finally, central to the empowerment of caregivers was the process of hearing and

respecting the voices of dementia caregivers and including them in the creation of new policies and procedures and in the decision-making process. This report provides one avenue by which care providers, planners, and policy makers working with and for caregivers and persons with dementia can begin to hear the voices of those they are attempting to serve. Within this document the issues and concerns of caregivers, supported by care providers, are expressed in their own voices.


CONCLUDING REMARKS

A number of researchers and professionals working in various contexts have argued for the inclusion of user voices in the development and delivery of services and the creation of public policy. Walker and Walker (1998) in their work on older adults with learning disabilities, for example, emphasised that supportive environments “can only be achieved if service users are listened to and involved in the development and delivery of services” (p. 141). Similarly, Feinberg and Whitlatch (2002), in their work on decision-making in dementia care, stressed that: “[by] recognising and respecting both voices – those of the care receiver and the caregiver – we can enhance future research and practice, foster the development of consumer direction in long-term care, and advance public policy to support caregiving families” (p. 244). Others have called for the development of partnerships in dementia care that respect the knowledge bases and voices of persons with dementia, their family caregivers, and professional care providers (e.g., Adams & Clarke, 1999). Although the inclusion of persons with dementia was beyond the scope of this research initiative – and represents a much needed addition in future research – this project does provide an important opportunity to hear and understand the perspectives of caregivers and care providers, particularly their perceptions of the state of dementia care in Ontario.

More specifically, the experiences, insights, and needs expressed by caregivers of persons with dementia and by professional care providers who participated in this project provide us with an in-depth understanding of dementia care in Ontario as it is currently perceived and experienced. Given that the themes identified by the caregivers and care providers in all of the 14 focus groups were overwhelmingly consistent certainly suggests that the challenges, frustrations, and difficulties associated with providing dementia care are experienced similarly by formal and informal caregivers alike. More importantly, the issues identified by caregivers, and supported by care providers, point to important directions for the advancement of long-term care practices and policy initiatives that may more effectively address the needs of persons with dementia and their families.

The fact that many of the themes and concerns raised by caregivers and care providers

focused on systemic issues and the delivery of health and community support services highlights the need to re-examine how we support caregiving families in Ontario. There is clearly a need to address the limitations in the system that make it difficult to more effectively meet the needs of persons with dementia and their caregivers. Certainly, the insights shared by the caregivers, and again supported by care providers, help to identify specific changes and alternative approaches to long-term care in the move towards creating more supportive environments in dementia care.

Systemic and service delivery issues, however, were only one of the areas of concern

for both caregivers and care providers. Addressing issues specific to education and public awareness, human resources, and the health and well-being of caregivers also were identified as critical to the creation of supportive environments in our communities for persons with dementia and their families. A summary of these overarching themes and sub-themes identified by the caregivers and care providers in the focus groups is presented in Table 1.


Table 1 A Summary of Overarching Themes and Sub-Themes

SERVICE DELIVERY /SYSTEMIC ISSUES

A. Fragmentation of Services

1. Need for interagency sharing/working together 2. Need for a “one-stop” service system

reflecting a continuum of care for easier access to services

3. Limitations of service provision by geographic boundary

B. Need-Based, Individualised Services

1. Need services responsive to or based on specific and changing needs of caregivers and persons with dementia throughout the disease process

2. Need for more continual monitoring, follow-up assessments, and evaluation of efficacy and appropriateness of services for both caregivers and persons with dementia

3. Need for one contact person within the community support system

4. Lack of diversity of services cognizant of language and cultural issues/needs, same gender care, and consideration of the age of the persons with dementia

C. Issues Related to Service Delivery

1. Respite and programmatic issues 2. In-home services needed 3. Environmental/community issues 4. Issues related to placement procedures

D. Issues Related to Funding and Stability in the

Community Support System 1. Need for more funding for support services

that is equitable across communities 2. Concern with instability and inconsistencies in

the community support and health care system

HUMAN RESOURCE ISSUES

A. Greater Need for Specialised Services B. General Need for More Human Resources C. Lack of Consistency in Staff D. Better Strategies Needed for the Recruitment

and Retention of Trained Volunteers and Front-Line Staff

PUBLIC AWARENESS AND EDUCATION FOR SERVICE

PROVIDERS A. Need for Specialised Training for All Care

Providers 1. More education for physicians and other health

professionals in dementia and dementia care 2. Accessible education on dementia and

dementia care needed for staff working in acute care and long-term care settings

3. Accessible education and training on dementia and dementia care needed for formal care providers working with persons with dementia in the community

4. Research needs related to dementia and dementia care

B. Need for Greater Public Awareness of

Dementia

CAREGIVER EMPOWERMENT AND WELL-BEING

A. Importance of Maintaining Caregiver Health

and Well-being B. Financial Issues

1. Caregiver compensation needed 2. Concern regarding cost of care and need for

affordable services 3. Need for self-directed funding options for

caregivers 4. Need for caregiver job, pension, and benefit

protection and adequate caregiver leave policies

C. Education and Support Issues

1. Education and training for caregivers, persons with dementia, and family throughout the disease process

2. Need for caregiver advocates or mentors 3. Inclusion of caregivers and persons with

dementia in the creation of policies and in decision-making

4. On-going support for caregivers and their families throughout the progression of the disease


In the third phase of the research project, highlights from the province-wide survey of caregivers and the results of the insights drawn and issues identified by the focus group participants were presented to a number of caregivers, care providers, policy makers, and planners from across Ontario in a one-day, working focus group meeting with the goal of developing specific recommendations and strategies for change. In this way, key stakeholders, by hearing the voices of caregivers of persons with dementia and care providers, participated equally in charting the course for the future in dementia care in Ontario. The results from that final stage of the research project are presented in the final report of this project entitled, In Their Own Voices: Guiding Principles and Strategies for Change Identified by and for Caregivers in Ontario.


REFERENCES

Adams, T., & Clarke, C.L. (1999). Dementia care: Developing partnerships in

practice. London, UK: Baillière Tindall. Canadian Study of Health and Aging. (1994). Patterns of caring for people with

dementia in Canada. Canadian Journal of Aging, 13, 470-487. Canadian Study of Health and Aging. (2000). The incidence of dementia in Canada.

Neurology, 55, 66-73.

Feinberg, L.F., & Whitlatch, C.J. (2002). Decision-making for persons with cognitive impairment and their family caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 17, 237-244.

Parent, K., & Anderson, M. (2001). Home care by default, not by design. CARP’s

Report Card on Home Care in Canada 2001. Toronto: CARP. Sanmartin, C., Houle, C., Tremblay, S., & Berthelot, J-M. (2002). Changes in unmet

health care needs. Health Reports, 13(3), 15-21. Walker, A., & Walker, C. (1998). Normalisation and ‘normal’ ageing: The social

construction of dependence among older people with learning difficulties. Disability & Society, 13(1), 125-142.

For more information of this project and other research related to dementia care, visit:

www.marep.uwaterloo.ca

Design:G

raphics, University of W

aterloo

Caregivers’Association�

of Ontario

Dementia Caregivers Identify the Issues - Stage 2: Focus Groups

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