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MMaappppiinngg tthhee LLaannddssccaappee
Assessing the Environment for Dementia Care In Durham
Focus Group Report
COE- Dementia Design Group
November 24, 2014
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Table of Contents
Background ................................................................................................................................................... 3
COE Mission .............................................................................................................................................. 3
COE Vision ................................................................................................................................................. 3
Priorities .................................................................................................................................................... 3
Introduction .................................................................................................................................................. 4
Client Profiles ................................................................................................................................................ 5
Early Stage ................................................................................................................................................. 5
Middle Stage ............................................................................................................................................. 6
Late Stage .................................................................................................................................................. 7
Emergent Ideas ......................................................................................................................................... 9
Empowering and supporting families and caregivers ........................................................................... 9
Responding to the unique needs of people with dementia ................................................................... 9
Changing the system ........................................................................................................................... 10
Enhancing system planning ................................................................................................................ 10
Focus Group Brainstorming ........................................................................................................................ 11
Recommendations ...................................................................................................................................... 14
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Background
Early in 2014, Durham’s Crown Counsel expressed concern about the growing numbers of
seniors with dementia entering the court system. This coupled with concerns from the health
field prompted several partners to express interest in connecting for further discussion.
In Feb 2014, Ontario Shores and several partners convened a meeting to explore the idea of
creating a Centre of Excellence (COE) for Dementia Care.
In June 2014, a roundtable was held with over 50 stakeholders, who supported the concept of
the COE. A Steering Committee convened to confirm the mission and vision for the COE.
COE Mission
The current working Mission of the COE is:
To catalyze and enable the provision of exceptional and seamless care to all people
experiencing dementia, and their families and caregivers across sectors in Durham Region
through enabling ongoing collaborative partnerships, innovation, research and continuous
learning.
COE Vision
The current working Vision of the COE is:
In Durham Region, people experiencing dementia and their caregivers will receive exceptional
and seamless care and support in safe, responsive and respectful environments
Priorities
The COE Steering Committee is presently focused on the following priorities:
Access
Delivery
Partnership
Training & Education
Research & innovation
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Introduction
The COE Steering Committee requested that an environmental scanning exercise be held to achieve the following objectives:
To determine the current health and social supports that are available for people living with dementia and their families in the Durham region and to identify other needs and gaps for these clients
To develop recommendations for the COE Steering Committee regarding the priority needs and gaps of social and health supports for people living with dementia and their families in Durham communities to improve:
Quality of social and health care Access Coordination and systemic support adding value for money
Based on the findings above, the Steering Committee will develop a work plan to guide future activity. As a first step, on November 24th, a small Planning Design Team convened a focus group with key stakeholders to:
Build client profiles reflecting various stages of the Dementia continuum to determine needs
Map needs against available services available at each stage in the Dementia continuum
Conduct a mapping exercise with stakeholders representing the points of service through the Dementia continuum
A summary of the proceedings of the focus group are included in this report and present an opportunity to identify and leverage the work of other groups engaged in Dementia care in Durham region. The following individuals participated in the focus group:
Yolanda Arone, Ontario Shores Mary Brazier, Revera Joanne Dykeman, Revera (Planning Team) Stacey Hawkins, Seniors Care Network Therese Lawlor, Community Care Durham Karen Lee-Boulton, Behavioural Supports Ontario Nazira Jaffer, Ontario Shores (COE Project Lead) Kelly Kay, Seniors Care Network (Facilitator, Planning Team)
Denyse Newton, Alzheimer Society (Planning Team) Jennifer Oja, Family Representative Michelle Pepin, Alzheimer Society Kim Ritchie, Ontario Shores Coreen Schuchardt, Family Representative Loretta Tanner, Alzheimer Society Cheryl Troicuk, Seniors Care Network Dr. Robyn Waxman, Ontario Shores
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Client Profiles
The following client profiles were generated from the literature and vetted with the focus group participants to identify a fulsome picture of needs and opportunities at each stage of the dementia continuum.
Early Stage
In this stage, a person with dementia may demonstrate
Forgetfulness, concentration and problem solving difficulties Difficulty learning new things Communication difficulties Changes in mood and behaviour
Types of needs and opportunities include:
Emotional support (client and family) Planning support - navigators need knowledge about dementia / elder care, one point
of contact for family Seldom physical help Support for decision-making
o What is involved? o What are the decisions? (POA) o Capacity assessment & clarify informed consent – to support choice need to
clarify capacity and wishes Assessment & diagnosis which includes
o Getting service in timely fashion - time is of the essence – waiting impedes planning, linkages to existing support early on
o Connecting with appropriate services (e.g. memory clinics) o Diagnosis – not clear at outset – follow up plan to confirm diagnosis o “Self-diagnosis”, self/family awareness of problems o Appropriate time for assessment (e.g. when families are available) and
scheduled around the person with dementia (when it is best for the individual to attend an appointment)
o Removal of barriers (e.g. restrictive criteria) Focus care/intervention on maximizing capabilities Flexible support – not a linear / staged experience A primary care doctor as advocate - links for GPs to support referral on Primary care education & direction “take it seriously, offer useful interventions” Algorithms / care maps Close the loop – transitioning between services – accountability, purposeful overlap Increased expertise in dementia care in the ER – the first point of contact in breakdown Take advantage of the opportunity to get the individual’s voice when possible Strengthening the voice of the caregiver – hear their observations
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o Families need to know where to start, go for support without judgement o Empowered families / LISTEN o Education on resources to support advocacy o “You turned a reasonable person into an unreasonable person” (quote from a
caregiver on advocating for one’s loved-one) Manage dynamics between providers (e.g. Health Link connection)
o Address repeat ED visits (EMS / Police) with collaborative planning Recognize “loss” of connections as care needs change – e.g. providers change, out of
district
Middle Stage
In this stage, a person with dementia may demonstrate
Impaired memory and thinking Increased mood shifts Confusion, disorientation
Types of needs and opportunities include:
Emotional support - “Step into their world” - understand where the individual is (know their personal history)
Assistance with daily tasks, need for routine – supporting routine Adapt environment to their needs Acquiring additional services – moving to assisted living (not necessarily formal) May be transitioning to long term care, happens earlier if no supports or if there are
significant symptoms – an early transition may help the individual settle in better than a late transition
Caregiver support o Particularly when behavioural and psychological symptoms of dementia (BPSD)
are present Caregiver support o May be moving from denial to reluctant acceptance o Need for night programs
In home care, retirement care, such diversity in settings – settings may not be matched to needs - a dementia care unit must really mean dementia care – a unique population with unique needs requiring unique skills for care
A place for those with particularly troubling behaviours to go o Where are the existing secure units?
Respite in an appropriate location o Good options / reasonable options o Resources to come to families
Securing resources for the journey, anticipating needs, planning for progression of the disease
Figuring out the finances (private pay / public pay) Agreed upon language & framework (system)
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Caregivers developing creative, adaptive strategies Recognition of “acuity” of dementia
o Changing the definitions o Understand the current definitions and their impact on available services
Formal training for families and PSWs to do ADL / IADL properly Consistency of service and communication between layers of providers Opportunities to learn from development services sector
Late Stage
In this stage, a person with dementia may demonstrate
Loss of memory, ability to process information and understanding of time and place Loss of ability to speak, although they may still say words or phrases. Non-verbal
communication will become more important. Responsive behaviours Become more agitated in the late afternoon and early evening, a phenomenon often
called “sundowning” Inability to express themselves Cannot swallow properly and may lose weight
Types of needs and opportunities include:
Total care (e.g. help with eating, using the toilet, ambulation and later, support to change position)
Caregiver support and relief, help to overcome stigma, coping with anticipatory grief
Promote caregiver understanding of the progression throughout, what to expect in the late stages? Having hard conversations (e.g. role of social work), need real discussions (support families as advocates without retribution)
Challenges predicting decline / planning for access to palliative (e.g. weight loss, not eating, infections)
Support / managing expectations during decline (especially during rapid decline) – transitions between levels of care happening in more rapid fashion
Supporting admission to LTC with hospice / palliative care – need support instead of “crisis” mentality, need to promote quality of life beyond health care
Coordinating transitions between changes in care needs (e.g. transitioning between high intensity places to LTC with less “one on one”)
Promote knowledge of individual care needs (caregivers, providers, staff within LTC) Personalization of care, such as timing of caregiving activities (e.g. meal time support) Supporting staff to do a good job with individuals and honour their wishes,
Encouraging / maintaining existing caring relationships (e.g. continuity)
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Needs may be accompanied by safety needs (also persons in home – types of services, equipment etc.)
Specialist support (e.g. Psychogeriatricians) in LTC o Shared care model o Interprofessional team assessment / support o Rethinking the care team o Psychogeriatric community outreach
Support to avoid unnecessary interventions o Not going to ED o Palliative pain management o Having the plan (antibiotic use / feeding tubes) o What should families say yes/no to? o Assistance with decision-making (on-going)
Linkage with hospice Grief support
Include structure & consistency (relationships, care techniques)
Quality vs. safety at “all” costs (include spiritual care)
Quality of life – social care
Flexibility in number of hours respite (acuity)
Allowing mechanisms to bring in community services in LTC Those who aren’t connected to any services may be a large group
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Emergent Ideas
These ideas emerged through the discussion and have been grouped in four themes: empowering and supporting families and caregivers, responding to the unique needs of people with dementia, changing the system and enhancing system planning.
Empowering and supporting families and caregivers
Understanding the impact of denial - families who may not seek services
Supporting the very young who are part of families experiencing dementia
Enhancing the use of family resource centre – currently underutilized (Alzheimer’s & Ontario Shores)
Developing and acknowledging the skill of family/caregivers – valuing what has been learned through experience. Drawing on learning from caregivers of people with dementia and other caregivers (e.g. mothers of special needs children) to educate teams
Taking the time to talk to families & caregivers to support decision-making
Conducting caregiver assessment (burden)
Creating checklists of things for families to do
Engaging families throughout care plan & assessment
Identifying “a go-to” person every step of the way, a system navigator matched to families
o Building on the role of existing organizations (e.g. Alzheimer Society)
Discussing what to expect each stage and how to tailor responses to match changing patient profiles
Translating current state – behaviours into stage / disease progression to support families and enable: normalization; pre-planning; preparation; enabling the next level of support “kick in”
Responding to the unique needs of people with dementia
Reducing the frustration experienced by care providers – not a straight-line journey
Establishing special criteria for services for people with dementia o Service requirements prior to approval/funding (e.g. CARF accreditation) o Mandatory training for behavioural support (staff / families) for agencies
providing dementia services or caring for patients with dementia o Specialized case management to work with the population with dementia o Special resident/patient staff ratios o Ongoing access to education / skills o “Hot issue” management process in Durham (e.g. Rounds) to enable system
response to challenging cases o Supporting transitions between care/services – behavioural support plans should
follow patients (e.g. BAT tool)
Enabling access to appropriate residential care o Secure “wings” for those who need it
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Enabling access to comprehensive assessment to overcome the challenge of accurate diagnosis and address concurrent medical issues
Looking beyond formal health professionals to other providers (e.g. Community and Social Service Agencies)
Changing the system
Consider creating services that we don’t currently offer o Specialize units (physical / programs) o 24/7 units / “day” programs, “night” programs (night care) o “Gentle movement” between place & settings o “Care” within “care” medical needs and social needs - one stop (staff that can
address medical needs in social programs) o Central LHIN mobile teams - Expert behavioural response teams that go to other
settings o Specialized medical (MD/NP) coverage in LTC to address dementia
Optimizing existing services o Families need access between existing services and need to know what they are
eligible o Need advocates o Multidisciplinary teams
Protecting housing: families are “terrified” about losing existing residences
Focusing visits and assessments at appropriate times for people and families - avoid short notice to access services
Eliminating siloed approaches to care – families are constantly needing to advocate for the next service, to address the next emerging need
Reducing time concerns: lags (wait) and compression (short turn around to access service e.g. admission to LTC)
Proactively addressing challenges (e.g. extreme responsive behaviours) o Link – Unspooling Mind presentation (16x9 presentation-Global TV) Dementia
Village (Netherland) o Gathering data on the scale of the issue – where are the numbers? (GAP)
Recognizing that sometimes the home is not the most appropriate (risk – family / patient)
Enhancing system planning
Understanding the scope of what we are dealing with (how many people, what needs)
Designing for cross cultural aspects of care
Capturing data on needs at each stage
Recognizing that dementia care requires specialization of services – not every unit can offer high quality dementia care
Understanding why are individuals are currently being rejected from LTC
Recognizing the urgency of dementia to families and to support best care plan
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Focus Group Brainstorming
In small groups, participants were asked to brainstorm a) the needs associated with each major stage of Dementia and b) the known services that address each need identified. Groups identified needs at each stage and attempted to match known services to identified needs. The most service gaps were identified at the Late Stage. Specifics are included in the tables below. Note: Gaps identified by the group are shown in red.
Early Stage
Identification Assessment (General) Assessment (Specialist) Referral on
Needs Recognized concern and identifying “warning signs”
Primary Care Assessment
Shared communication (e.g. assessment findings, care plan)
Incentive and education to enable PCP
Referral to Specialist Referral to other community services
Self management support
Advocacy Reduce barriers for
referrals from “non-medical” providers into health system
Known Services
Alzheimer Society First Link/Alzheimer Society
Health Care Connect (if no PCP)
GAIN Ontario Shores Community Care
Durham Canadian Mental
Health Association Alzheimer Society
CCAC CCD Respite Dementia Network Alzheimer Society
brochures and linkages
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Middle Stage
Assessment Planning Intervention Evaluation
Needs Connection to primary care
Data collection tools Appropriate skills
and resources POA/SDM
May not have CCAC, therefore other resources
Support Groups (Informal)
Awareness of COE Design interventions –
Montessori for care providers (formal and informal)
24/7 programs Offsite (out of home)
Bathing Program Respite care Use of technology for
safety Common portal for health
records Education – skills, problem
solving matrix (BETSI) Equipping families with
advocacy skills Tie formal home care
contracts with skill of workforce (e.g. BC)
CARF – Dementia Care Accreditation
Map out cost of care to show financial need – proportion of private pay needed to sustain people with dementia at home
Orientation to Dementia care in Durham for providers to optimize service use
No known approach to current service evaluation
Links with educators (e.g. Teaching LTC Facilities)
Application of education Medical buddies (e.g.
medical resident & elderly person pairs in family medicine residency programs – build FM capacity for SGS)
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Known Services
Clinics (medical, memory, mental health) e.g. PASE, Ontario Shores GAIN
GPs, Primary care NPs
CCAC
CCAC Alzheimer Society GAIN Ontario Shores/PASE Primary Care
GAIN Ontario Shores Primary Care CCAC Alzheimer Society CCD CSS (e.g. Adult Day)
Late Stage
Needs Early engagement with palliative care planning (hospice, end-of-life) Quality of Life – preferences; soc. / rec. / leisure; life-long connections Symptom management Expanded respite – based on needs / acuity Knowledge & skills development Flexibility with / between services Extreme responsive behaviour management plans Responsiveness to emerging needs
Known Services
Hospice, palliative care beds (LTC), palliative CCAC, Hospital, ER DNR orders between services Some recreation / leisure programming Comforting / personalized spaces / environments Transiting between places – loss of quality of life in favour of medical needs alone Death at home – what will it take? Lack of planning information about where people are in late stage – proportion in LTC 80% / community
20%
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Recommendations
The environmental scan has highlighted the gaps, needs and priorities to support Dementia clients and their families in the Durham Region. The focus group findings suggest that the task to re-frame the experience of clients with Dementia and their caregivers in the Durham Region begins with the development integrated model of Dementia Care for the Durham Region. It is recommended that this be facilitated by the establishment of three priority work groups:
Families and Caregiver Support Group - This group will identify actions to empower and support families and caregivers at each stage in the Dementia continuum
Response to Unique Needs Group – This group will identify actions to improve access to appropriate care and services including comprehensive assessment and community-based services beyond formal health professionals, along the patient needs continuum
System Change and Enhancement Group - This group will develop of a new model of dementia care including the creation of new
services and/or enhancement of existing services to improve the experience of the people with Dementia