Transcript Moving Forward Together, Updates on PDD-D

BC Psychogeriatric Association Conference, April 24/25, 2015
Kamloops, BC
Elisabeth Antifeau, RN, MScN, GNC(C)
Home Health Practice Lead, Community Integration, IH
Complex/Special Populations and Palliative/End-of-Life Care
BCPGA 2015
Maintaining the Momentum
Moving Forward Together:
New developments in caring for
persons with developmental disability
who develop dementia
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Overview
• Description of IH-CLBC collaboration to address dementia
needs in the developmentally disabled population
• Work underway – what’s coming?
• Resources and approaches that inform care and quality of life
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• Moving forward together in a unique partnership
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Identifying issues
• 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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• 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);
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Background data:
Developmental Disability and Dementia
• People with DD are living longer than
ever before;
People with Down Syndrome –
• People with DD have increased risk for
chronic diseases like heart, increased
BP, stroke, diabetes, obesity, etc.
1900:
1947:
1983:
1999:
2012:
• 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…
9-11 years
12 years
26 years
56.8 years
63.4 years
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• People with Down Syndrome (DS) have
a greater genetic risk to develop
dementia than DD people with non-DS
Greatest gains in average life expectancy:
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CLBC Data
CLBC Thompson Cariboo Statistics:
TCS Statistics
Active CLBC Clients
by Age
Percentage of
Active TCS Files
45-54 years
142
17.6
55-69 years
100
12.4
30
3.7
272
33.7% are aging
70+ years
Total:
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• 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.)
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IH Current State (n=1180)
Creston
EK
KB
TCS
57
131
78
251
Total clients
≤ 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%
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%
-
Unable to
calculate
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Conclusions
• 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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• There is good evidence that DD populations are at increased risk to
develop dementia at the same or greater rate than the general
population;
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Next Steps and Timelines…
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
December 2014: Seeking new
ways to work together
Summer and Fall 2014: Joint
Work plan written and
approved by both agencies
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•
•
•
January to April 2015:
Collaboration is producing
results
Spring 2014: Joint issues
exploration and identification
February 2014: First meeting
of the Joint Agency Working
Group
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• 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, wellintegrated dementia care services within communities
and across agencies in the Interior Health and
Community Living BC regions.
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Vision
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IH-CLBC Collaboration:
Who are the players?
Developmental Disability Mental
Health Services:
• Registered Nurse
Regional Knowledge Coordinator
Practice Lead, Complex Pops
• Community Facilitators
• Analysts
• Managers
• Contract Provider
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Health Services Community Living:
• Registered Nurse
• Occupational therapist
• Physiotherapist
• Registered Dietitian
• Dental Hygienist
• Speech Language
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So what are we doing?
• Creating resource guides and
information for:
• 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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• Clients
• Families, Caregivers and
Providers
• Physicians
• IH and CLBC Staff members
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Client Resource Information
• Exploring available pamphlets and
illustrated booklets, and options to
adapt or create materials for local
use;
• 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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• Plain English resources;
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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
•
•
•
•
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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Maintaining the Momentum
• Logical flow of topics following the journey of dementia…
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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.
• 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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• Topic areas include:
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CLBC-IH Staff Resource Guide
• 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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Maintaining the Momentum
• 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:
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Other Developmental work
• 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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Maintaining the Momentum
System Wide Proactive
Screening Implications:
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Integrating changes into
every day work
• 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?
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Maintaining the Momentum
• Exploring options to embed screening recommendations into
normative practices for:
• Clients, Families, Providers:
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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
•
•
•
•
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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Maintaining the Momentum
• Sought a shared platform: (January 2015)
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Summary
• Collaborative joint agency model is producing results to
common goals of client care and for system improvements;
• 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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Maintaining the Momentum
• Keeping the client and the family in the centre of all our work;
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