Moving Forward Together: New developments in caring for persons with developmental disability who develop dementia

BC Psychogeriatric Association Conference, April 24/25, 2015Kamloops, BC

Elisabeth Antifeau, RN, MScN, GNC(C)Home Health Practice Lead, Community Integration, IHComplex/Special Populations and Palliative/End-of-Life Care

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Overview• Description of IH-CLBC collaboration to address dementia

needs in the developmentally disabled population

• Moving forward together in a unique partnership

• Work underway – what’s coming?

• Resources and approaches that inform care and quality of life

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Identifying issues• Fall 2013: Increasing anecdotal reports from clinicians and CLBC staff

struggling to meet the needs of people with developmental disabilities who develop dementia (PDD/D);• Increasing numbers of people with dementia in both IH/CLBC and delayed

recognition or not picked up until crisis hits…• Gaps in client, family, caregiver, provider and staff knowledge;• Challenges in adapting care plans and providing care due to increased

behaviours, seizures, functional losses;• Uncertainty about best practices, how to best meet needs in community.

• Winter 2013: Approached the IH-CLBC Regional Committee with data about the scope of the problem – environmental scan from both CLBC and IH showed significant numbers;

• February 2014 to present: Joint Agency Working group for PDD/D commenced – this work showcased today

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Background data:Developmental Disability and Dementia• People with DD are living longer than

ever before;

• People with DD have increased risk for chronic diseases like heart, increased BP, stroke, diabetes, obesity, etc.

• People with Down Syndrome (DS) have a greater genetic risk to develop dementia than DD people with non-DS

• People with DS experience premature aging;

• Dementia screening should be minimally implemented around age 40+ for people with DS and age 50+ for people with non-DS disability…

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People with Down Syndrome – Greatest gains in average life expectancy:

1900: 9-11 years1947: 12 years1983: 26 years1999: 56.8 years2012: 63.4 years

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CLBC Data

CLBC Thompson Cariboo Statistics:• Source: Active CLBC Files:• 808 people with developmental disability

Statistics from the General Population would tell us that in this region:

• 16-20 people age 65+ may develop dementia (But because they are not general population, the odds/risk may be higher.) 5

TCS Statistics Active CLBC Clients by Age

Percentage of Active TCS Files

45-54 years 142 17.6

55-69 years 100 12.4

70+ years 30 3.7

Total: 272 33.7% are aging

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IH Current State (n=1180)Creston EK KB TCS

Total clients 57 131 78 251

≤ 29 yrs 1 <1% 34 26% 9 11.5% 57 22.7%

30-39 years 3 5.3% 29 22% 7 9% 31 12.4%

40-64 years 41 72% 47 36% 51 65.4% 126 51%

65-74 years 9 15.8% 12 9% 5 6.4% 30 12%

> 75 years 3 5.3% 9 7% 6 8% 7 2.8%

Ages 40+ 53 93% 68 52% 62 79.5% 163 65%

• Bulging middle year cohort• Some communities are more aged than others, e.g., Invermere (n=14, 9 clients are

age 69+)• Source: IH Meditech Reports pulled October 30th, 2013 - Active HCC Clients by

Program/Diagnosis/GeographicalArea

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Known Dementia Risk Factors for IH HSCL Clients (n=1180)

Risks Creston EK KB TCS OK

Total clients 57 131 78 251 663

Down’s Syndrome

10 17.5% 10 7.6% 14 18% 17 6.8% Unable to calculate

Dementia 1 1.8% 1 <1% - - 5 2%

Diabetes 2 3.5% 7 5.3% 12 15% 15 6%

Hypertension 1 1.8% 6 4.6% 3 3.8% 9 3.9%

Stroke - - 1 <1% - - 3 1.2%

Seizures 10 17.5% 21 16% 35 45% 41 16.3%

Acquired BI - - 3 2.3% 1 1.3% 4 1.6%

Substance Abuse

2 1.8% 8 6.1% 1 1.3% 7 2.8%

# individuals with 1 or >

risk(s)

20 35% 49 37% 54 69% 94 37.5% 7

Conclusions• There is good evidence that DD populations are at increased risk to

develop dementia at the same or greater rate than the general population;

• Using population projections, there is reasonable evidence that the risk for this population is significant enough to warrant system planning;

• Using current client data for frequency by age and incidence of known dementia risk factors, there is good evidence that the HSCL population in IH requires system planning of supports and intervention.

• Ministry data (2012) reports the oldest cohort by HA in BC is in Interior Health

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Next Steps and Timelines…

February 2014: First meeting of the Joint Agency Working Group

Spring 2014: Joint issues exploration and identification

Summer and Fall 2014: Joint Work plan written and approved by both agencies

December 2014: Seeking new ways to work together

January to April 2015: Collaboration is producing results

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Develop a joint agency, interdisciplinary Working Group to create a work plan that addresses the following domains of dementia: • Health Promotion/Risk Factors/Healthy Brain;• Early Detection/Screening to Early Diagnosis;• Support and Education for Clients, Families,

Service Providers and Health Professionals;• Behavioural and Psychological Symptoms of

Dementia (BPSD);• Late Stage supports, Palliative Care and End of

Life

Vision

• To support brain health, early detection and screening, timely diagnosis, and the quality of living and dying for individuals with developmental disability who develop dementia through the delivery of knowledgeable, well-integrated dementia care services within communities and across agencies in the Interior Health and Community Living BC regions.

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IH-CLBC Collaboration:Who are the players?

Health Services Community Living: • Registered Nurse• Occupational therapist• Physiotherapist• Registered Dietitian• Dental Hygienist• Speech Language

Developmental Disability Mental Health Services:• Registered Nurse

Regional Knowledge Coordinator

Practice Lead, Complex Pops

• Community Facilitators

• Analysts

• Managers

• Contract Provider

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So what are we doing?• Creating resource guides and

information for:• Clients• Families, Caregivers and Providers• Physicians• IH and CLBC Staff members

• Exploring the implications and potential impact of system wide dementia screening across our agencies and making recommendations;

• Taking stock of our staff’s need for knowledge, information and education to support their daily work.

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Support brain health by reducing cardiovascular andknown dementia risk factors

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Client Resource Information• Exploring available pamphlets and

illustrated booklets, and options to adapt or create materials for local use;

• Plain English resources;

• Topics areas:• Healthy choices for healthy brains

(getting active, eating right, sleep, work and play themes)

• Advanced Care Planning - choices• What is dementia?

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EXAMPLE:

Source: What is dementia? Down Syndrome Scotland

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Family and Provider Resource Guide

• Provide help navigating a wide array of resources

• Logical flow of topics following the journey of dementia… • healthy living recommendations to address risk;• Screening recommendations and user friendly tools;• Support while seeking diagnosis – what to expect, what to ask;• Understanding the dementia journey – sources of support and

education• Care of the individual and care of self

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Physician Resource Guide• Provides physicians with an interactive online list

of resources to assist in finding appropriate information and services available within British Columbia related to clients with developmental disabilities and dementia.

• Topic areas include: • Canadian Consensus Guidelines on Primary care for

PDD • Preventative health care checklists• Tips for Communicating and Effective Office visits• Advanced care planning and developmental disability• Screening Recommendations – NTG-EDSD, Complex

Task tool• Diagnostic Pathway for Dementia• Care and management of the person with dementia,

including BPSD, PIECES, etc.

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CLBC-IH Staff Resource Guide• a list of on-line resources to

assist staff from CLBC and Interior Health in finding appropriate information and services to guide care and service planning.

• Topics include: • Advanced Care Planning• Health Promotion• Screening & Diagnosis Guidelines• Common Early-Mid-Late Phase

changes• Clinical Tools:

• Seizure Management• Behavioural Management • DOS, PAINAD, PIECES• Auditing Psychotropic Medications

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Other Developmental workSystem Wide Proactive Screening Implications:• NTG guidelines vs. Task

force recommendations;• NTG-EDSD & Complex

Task tool?• Roles in the system?• Communication flow?• Impact on providers,

physicians, clinicians, etc.• Target populations – who

can we reach and how?

Assessing CLBC and IH Staff Learning Needs:• Joint agency fluid survey• 71% completion and return• Input and feedback on key

learning needs about dementia and care/system needs to support people with dementia.

• Joint educational development and delivery is planned for future.

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Integrating changes into every day work

• Exploring options to embed screening recommendations into normative practices for:

• Clients, Families, Providers:• Setting goals for active living• Annual Health care plans (HSCL/DDMH)

• Contracted Providers: • Annual Review requirements/ checklist• 6 month Quality of Life Review – monitoring

• Target populations: • Home Share, Group Home, In-reach and Cluster care clients• Clients and Families with little or no CLBC services? 19

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Innovative ways of working together: CLwK – Connecting Learners with Knowledge

• Need for communication and active participation by all members across agency lines is critical

• Sought a shared platform: (January 2015)• CLwK from BC Patient Safety and Quality Council• Private Group forum• Co-chaired meetings now every other month, feedback in forum• Experiencing new ways of working together and sharing views

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Summary• Collaborative joint agency model is producing results to

common goals of client care and for system improvements;

• Keeping the client and the family in the centre of all our work;

• This is relational work – its about improving all relationships of people who work, live and care for those with developmental disabilities and who may develop dementia – to achieve better health and quality of life.

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