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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