IMPROVING TRANSITIONS FROM

HOSPITAL TO RESIDENTIAL AGED

CARE FACILITIES FOR PEOPLE

WITH DEMENTIA

Transfer of Care Conference

23rd

June 2015

Sally Lambourne

Senior Project Manager– Policy, Research & Information

Alzheimer’s Australia NSW

THE MOST DIFFICULT DECISION

DEMENTIA AND THE MOVE INTO

RESIDENTIAL AGED CARE

THE MOST DIFFICULT DECISION:

DEMENTIA AND THE MOVE INTO

RESIDENTIAL AGED CARE

While every best effort is made to support people with dementia to live at home for as long as possible, a large number will ultimately move into residential aged care.

For these people with dementia, their carers and families, this time of transition to residential care can be smooth and well planned, but more often it can be a time of great emotional stress and anxiety.

THE RESEARCH PROJECT

To understand the experiences of people with dementia and their carers/families AlzNSW undertook a research project with Baptist Community Services and UnitingCare Ageing to hear the voice of carers who had placed a person with dementia in residential care.

Provide recommendations to Federal and State Governments and Aged Care Providers.

http://www.fightdementia.org.au/new-south-wales/research-nsw.aspx

Literature Review: scientific, grey literature, policy

Focus groups: Metro Sydney, Dubbo, Tweed Heads, Newcastle and Campsie

Carer surveys (251)

METHODOLOGY

52% of people in residential aged care (RAC) have dementia

It is estimated that 85% people with dementia will require RAC (AIHW)

The transition into RAC is one of the most significant relocations for older people

50% of new residents come directly from hospital

Moving in into Care Project – Carers report 33% transfer directly from Hospital to RAC

Discharge to RAC a strong predictor of rehospitalisation within 30 days*

DATA

King BJ1, Gilmore-Bykovskyi AL, Roiland RA, Polnaszek BE, Bowers BJ, Kind AJ. (2013) Journal of the American Geriatrics Society The consequences of poor communication during transitions from hospital to skilled nursing facility: a qualitative study. Jul;61(7):1095-102.

Loss of control

Deficiencies in communication about how the process works

Lack of support

Feelings of guilt, exhaustion, anxiety, relief, disempowerment, inadequacy and sadness.

WHAT CARERS ARE SAYING

It was a terrible experience for us both but it was something that

we had to go through.

Difficult transitions the norm?

Missing or incomplete information

Conflicting information

Inaccurate information

Increasing complex needs makes this all the more important

HOSPITAL TO RAC TRANSITIONS

We didn‟t know her mobility status so we had to

leave her in bed until we could confirm (RAC staff)

Impact of inadequate transition

Individuals and Families

RAC staff

RAC Providers

HOSPITAL TO RAC TRANSITIONS

It sends a terrible message to the resident and their family that we

are incompetent and this sets the scene for our ongoing relationship.

Good Practice

Relationship between Hospital and RAC

Up-to date information including any notable events in a timely manner

Written orders for medications, treatments, activity level and diet

Recent and pending pathology results

Accurate description of functional and cognitive status

Social information: preferences and unique needs

Contact numbers (MO, Discharge Planner, Nurses, Allied Health, Family)

Carer Support

HOSPITAL TO RAC TRANSITIONS

The decision that she had to be transferred from the hospital to the aged care facility was hasty and left me little time to fully

pursue options available (daughter)

Had to rely on the hospital social workers to let me know when a facility had a vacancy, then it was a rush to see them before

someone else took the spot (carer)

The moving in went very well as Dad came directly from the hospital (adult child)

He hated it. Blamed me until I explained that the doctors at (hospital) made the decision not me…now he’s glad to see me

which is a real bonus (wife)

WHAT CARERS ARE SAYING

Relationship between Hospital and RAC (actively engage, cooperative care)

Documented procedures for hospital admission

Advocate for resident: communicate expectations

Be prepared for residents return to RAC

Person-centred care tool for people with dementia: supports health and social care professionals build a better understanding of who the person really is.

RAC TO HOSPITAL TRANSITION

For every visist we send residents in with all the information, not just medical needs but also interests, preferences, likes and dislikes

Photo

Name I like to be called

Where I live

Carer/the person who knows me best

I would like you to know

The following routines are important to me

Things that may worry or upset me

What makes me feel better if I am anxious or upset

My hearing and eyesight

How we can communicate

My mobility

My sleep

My personal care

How I take my medication

My eating and drinking

Other notes about me

RAC TO HOSPITAL TRANSITION:

THIS IS ME

Strategies to improve the outcomes for people with dementia*

Identify and manage dementia at hospital admission and plan for discharge from the outset

Involve family carers in the care and support of patients

Train staff to better understand dementia and communicate more effectively with people with dementia

Use alternatives, such as psychosocial interventions, to the use of antipsychotic medication and sedatives

Adapt the hospital physical environment to reduce distractions and help orientate patients with dementia

Reduce avoidable hospital admissions.

DEMENTIA CARE IN THE ACUTE

HOSPITAL SETTING

*Alzheimer’s Australia (2014) Dementia Care in the Acute Hospital Setting: Issues and Strategies

Carers and their essential role are identified at first contact or as soon as possible thereafter

Staff are ‘carer aware’ and trained in carer engagement strategies

Policy and practice protocols regarding confidentiality and sharing information, are in place

Defined post(s) responsible for carers are in place.

A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.

A range of carer support services is available

TRIANGLE OF DEMENTIA CARE*

Carers and professionals have a lot to learn from each other – they need

to work together to get the best outcomes for the person with dementia.”

*Carers Trust UK and the Royal College of Nursing (2013) The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care

TRANSFER OF CARE

CONFERENCE

IMPROVING TRANSITIONS FROM HOSPITAL TO HOME FOR PEOPLE WITH DEMENTIA

23rd

June 2015

Brendan Moore

General Manager – Policy,

Research & Information

Alzheimer’s Australia NSW

THE INTERACTION BETWEEN

HOSPITAL AND COMMUNITY-BASED

SERVICES FOR PEOPLE WITH

DEMENTIA AND THEIR CARERS

FINAL REPORT, AUGUST 2013

Dementia as a health issue

• 3/4 people in care homes have dementia

(Matthews 2013) OR 52% (AIHW 2012)

• PWD over-represented in general hospital &

ED (Banjaree 2013)

• PWD LOS x 2 of those non-dementia &

higher readmission within 3/12 (AIHW 2012).

• G8 Dementia summit 2013

• Ninth national health priority in Australia in

2012

• Carers for PWD as part of the care team (Bradway & Hirschman 2008)

• Discharge planning variable (Fitzgerald et al 2011)

• Transition home not acknowledged in meta-analysis (Prorok et al 2013)

• Health staff don’t make opportunities for person-centred care in PWD (Clisset et al 2013)

• Poor carer perceptions of care linked to expectations and relationship with staff (Jurgens et al 2012)

• Timely access to community care after hospitalisation reduces rate of entry to RAC (Karmel 2012)

Hospital care

• Valuable in preventing admission and entry to hospitals and RACFs – more pronounced post-hospital with high level packages (Hales 2006)

• Care needs post-hospital can be markedly different to pre-hospital – hence the high proportion of RACF admissions from hospitals (Hales 2006)

• Carer health can decline post-discharge and impact on sustainability (Runge et al 2009) – respite a key service in supporting this but limited options in regional areas (Innes 2005, AAWA 2007)

Community-based care

Investigate the experiences of people with

dementia and their carers when the person

with dementia is hospitalised and discharged

into the community

Research Aim

Methods

• Qualitative descriptive design

• Carer focus groups in Dubbo and Newcastle

• In-depth interviews with 30 family carers of people with dementia - across NSW.

• Four focus groups with community-based service providers in regional and metro NSW – Concord, Newcastle, Dubbo

• Concluded with a carer validation focus group - Bondi

• Analysis of HDS Project data focused on discharge planning and staff perspectives of their relationship with community-based services

• Ethics approval from University of Canberra HREC

• The direct experience of service use

from admission to hospital to home

• The most challenging and satisfying

moments during this experience

• The community service requirements

– available, accessible

Questions

• A paradoxical requirement to deliver care for the person with dementia while being excluded from decisions about nursing or medical care;

• Absence of coordinated approach to discharge planning reduces opportunities to organise community supports; and

• Re-establishing and/or accessing new services was challenging with a mismatch between needs and available services.

• Inability to separate the experience of hospital, discharge planning and community-based services – it is all linked.

1) Key themes: Carers

• Familiar person to support care requirements, but person with dementia was assumed to be able to recall facts and make decisions.

• Carers more exhausted after hospital episode, but professional judgement that it is a form of respite.

• 28/30 report being asked to stay.

• They just left it all to me, makes you wonder what happens to people who don‟t have a partner or a wife, what happens to them in these situations. (WifeB)

• …there was never any communication with me, when I did try to say something they just ignored me and listened to him (WifeC).

• I can‟t handle this anymore; I‟m absolutely buggered from no sleep at night. (Partner)

Paradoxical requirement

to care

• Several carers reported receiving phone calls from the hospital while at work or on the way to visit the hospital to indicate imminent (same day) discharge.

• He needed more care when he got home, I had to make an ACAT [Aged Care Assessment Team] assessment appointment, phone social workers, lots of phoning but no care, it took several weeks, then when they actually assessed him they said he didn‟t qualify for more care. In the end I got a private carer. (DaughterA)

• Some instances of being packed up and left unattended with some reports of the person with dementia walking out of the hospital.

• Geriatrician presence can improve

Absence of coordinated

discharge planning

• Social support and respite highly valued

• When we got home we were then out of area for the ACAT team, but they never told me, If they„d just asked me… “Are you out of the area?” They will do this on the other side. They never even said to me contact your case manager and get some help. No, nothing, nothing at all I just had to try my best. (WifeD)

• Dad returned to supported accommodation, he needs cream applied to an infected leg wound. Community nurses were reluctant, not serious enough, they told me to instruct the carers, but they were reluctant as this „therapy‟ was outside their scope of practice. I was working at the time so after a while I got in a private care service, but really they were not much better, you just get passed around, somehow it‟s nobody‟s job, I had to just manage as best I could. (DaughterB)

• Geographic demarcation and boundary issues - inflexible access

• Time of response for packaged care can hinder the potential to be discharged home safely and sustainably.

Re-establishing and/or accessing

new services: mismatch

• Inclusion of carers and greater

understanding of the importance of the

family carer role, their need for support

and to be involved in the care and

decision-making process

• Discharge planning – starts at admission

• Community service coordination and

action required

Family-focused model of

care

1. Carers lead decisions and these are often

influenced by fears about RACF

placement, costs and stigma. Role of

other carers important in decision-making

2. Fragmentation – time limits, delays, wait

lists

3. Hospital experiences influence the home-

based experience

2) Key themes: Community-

based service providers

1. Don’t know what is available to them

2. Others do know, but feel they are coping

so don’t seek / not ready

3. Carer support groups are great sources

of information and support available

Role of carer

1. State services time limited – Commonwealth services over-subscribed

2. Access to one service can exclude access to others and this is not known by carers

3. Delay in service provision can result in re-admissions.

4. Case conferences in hospitals which include community-based providers leads to better outcomes.

Fragmentation

1. Focus on bed management limits quality of discharge planning

2. Discharge planning sometimes non-existent

3. Hospital staff lack knowledge of community-based package options

4. Hospital practices replicated in home by carer

Hospital experiences

influence home experience

1. Availability of short-term community services supports discharge

2. ACAT assessment at home rather than hospital requires significant planning – not always available, timely etc.

3. Rehab services may exclude people with dementia

4. Availability of emergency respite may reduce hospital admissions

5. Regular meetings between community and hospital stakeholders with a focus on discharge planning improves outcomes – often linked to quality of relationships

3) Key themes: HDS data

1. Need a dementia specific transition care and/or rehabilitation service

2. Start discharge planning on admission

3. Better information delivered better will help carers in decision-making re: community-based services

4. Linkage to support groups is vital

5. Continue expansion of consumer led case management to reduce readmission rates

6. Expand innovative hospital-based solutions to issues identified eg Top 5, symbol, staff training, interdisciplinary networks

7. Expand programs/systems which can support carers and people with dementia across health, community and residential care settings.

Recommendations

THANK YOU

brendan.moore@alzheimers.org.au

sally.lambourne@alzheimers.org.au

QUESTIONS & DISCUSSION