Central LHIN Board Education Session April 26, 2016

Agenda • Welcome & Introductions • Part A – 2:00–3:45pm - Caregiver Distress 1. 2. 3. 4. 5. 6.

RESEARCH: Change Foundation – Stephanie Hylmar PROGRAMS: LOFT – Suzanne Saulnier REALITY: Caregiver – Peter Smith REALITY: Caregiver – Sylvia White PREDICTORS: University of Waterloo – Raquel Betini POLICY: Canada Cares – Caroline Tapp-McDougall

• Part B – 3:50–4:30pm - Board Decision Making Framework 1. Central LHIN – Karin Dschankilic 2

Part A – 2:00pm-3:45pm

Caregiver Distress: Challenges & Solutions

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Caregiver Statistics Stephanie Hylmar The Change Foundation

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Family Caregivers In Ontario Central LHIN Board Education Session Tuesday, April 26, 2016 Stephanie Hylmar, MSc Research Associate

AGENDA • Introduction to The Change Foundation • Methods and Limitations • Defining Family Caregivers • Who are Ontario’s Family Caregivers?

• Who are Caregivers Caring For? • What are the Impacts of Caregiving?

• Questions

THE CHANGE FOUNDATION • Endowed by the Ontario Hospital Association in 1995 • Spent 10+ years as a granting organization focused on funding research for local health system improvement • Redefined as a Think Tank in 2007 • Spent the last five years working directly with patients and front line staff to improve patient engagement and experience • Our current strategic goal is to improve the experience of family caregivers as they help a family member transition through and interact with Ontario’s health and community care systems

METHODS • The data comes from the General Social Survey (GSS), conducted by Statistics Canada in 2012 • 6,850 survey participants were from Ontario  2,213 identified themselves as family caregivers • The data presented here is an extrapolation of these responses and represents the entire population of Ontario • Weighted Population of Ontario 11.2 million people  3.3 million family caregivers

LIMITATIONS • The data was collected by a secondary source • The survey was conducted by telephone interview and used random digit dialing • The survey was lengthy and required participation from multiple members of the same household

• There is a lack of qualitative explanation to complement the data (i.e. high non-response on some questions is not explained) • The day/time that caregivers were interviewed could effect their responses (i.e. a high stress versus low stress day)

DEFINING FAMILY CAREGIVERS

• Family caregivers are people – family, friends, neighbours – who provide critical and often ongoing personal, social, psychological and physical support assistance and care, without pay, for family members and friends in need of support due to frailty, illness, degenerative disease, physical/cognitive/mental disability, or end of life circumstances.

WHO ARE ONTARIO’S FAMILY CAREGIVERS? Gender, Age and Marital Status • In Ontario 3.3 million people provide some form of care or support to a family member or friend • 53% Female - 47% Male • • • • •

11% over age of 65 19% between 55-64 23% between 45-54 30% between 25-44 17% between 15-24

• 65% of caregivers are married or in a common-law relationship • 27% are single, never having been married

WHO ARE ONTARIO’S FAMILY CAREGIVERS? Sandwich Generation, Location and Language • 29% of caregivers have one or more children who are under the age of 14 in the household • 9% of caregivers are lone parent families • 63% Female – 37% Male • 86%

– 14%

• 30% of caregivers live in the same household or building • 50% of caregivers live under an hour away by car • 20% of caregivers live an hour or more away by car • 21% of caregivers’ primary language is not English or French

WHO ARE ONTARIO’S FAMILY CAREGIVERS? Paid Employment and Income • 76% of caregivers juggle caregiving and paid employment • Caregiver Annual Personal Income

13%

No income or loss 8% (N= 268,000)

8%

Less than $40,000 37% (N= 1,231,000)

7%

$40,000 - 59,999 17% (N= 549,000)

8% 37%

$60,000 - $79,000 10% (N= 329,000) $80,000 - $99,999 8% (N= 228,000)

10% 17%

$100,000 and up 7% (N= 265,000) Not Reported 13% (N= 429,000)

WHO ARE CAREGIVERS CARING FOR? Relationship • 84% of caregivers are providing care to a family member • 13% are providing care to a close friend, neighbour or colleague • Relationship to Care Receiver 1,800,000 1,600,000

47% 1,556,000

1,400,000 1,200,000 24% 772,000

1,000,000 800,000

13% 420,000

600,000 400,000 200,000

7% 233,000

6% 182,000

2% 81,000

0 Parent or In-Law

Other Family Member

Close friend, neighbour, or colleague

Spouse

Child

Other Relationship

Not Stated

1% 37,000

WHO ARE CAREGIVERS CARING FOR? Type of Help Provided • 28% (1 million) are caring for someone because of ageing • Types of help provided by caregivers 3,500,000 3,000,000

2,948,000 2,577,000

2,500,000 2,000,000 1,500,000

1,883,000

1,729,000 1,219,000

1,016,000 1,000,000

940,000

811,000

500,000 168,000 0

WHAT ARE THE IMPACTS OF CAREGIVING? Time Spent • The average caregiver spends 11 hours a week on caregiving duties • Caregivers’ time spent caring as a function of gender Both

Women

Men

6% 6% 6%

Don't Know

26% 10 + Hours

29% 22% 47% 48%

2 - 9 Hours

46% 21% 17%

1 Hour (or less)

26% 0

200

400

600

800

1,000

1,200

1,400

1,600

1,800

WHAT ARE THE IMPACTS OF CAREGIVING? Work – Life Balance • 45% (1.5 million) of caregivers report struggling to fulfil caregiving duties because of work • 41% (1.3 million) of caregivers experienced some degree of difficulty concentrating on work because of caregiving • During the last 12 months the 76% (2.5 million) of caregivers balancing caregiving with paid employment said:

• 30% were late for work or had to leave early • 30% on average missed a day of work per month • 1% (35,000 people) terminated their employment (either quit or were fired)

WHAT ARE THE IMPACTS OF CAREGIVING? Choice, Stress and Emotional Impact • 31% (1 million) of caregivers felt they had “No Choice” in taking on their caregiving responsibilities • Caregivers experience both rewards and stress as a result: • 48% (1.6 million) say it is “rewarding” or “very rewarding” • 47% (1.6 million) say is it “somewhat” or “highly stressful” • Of the 2.3 million caregivers that described their emotions: • 55% (1.3 million) were worried or anxious • 52% (1.2 million) were tired • 38% (900,000) were short tempered and irritable • 36% (800,000) were overwhelmed by caregiving

WHAT ARE THE IMPACTS OF CAREGIVING? Triggers of Caregiver Stress • The 47% (1.6 million) of caregivers who found caregiving stressful said there were specific triggers, including: • • • • • •

dealing with the care receiver’s decline making decisions for their care receiver finding services for the family member balancing caregiving with other responsibilities managing their own emotions experiencing a decline in their own health due to caregiving

WHAT ARE THE IMPACTS OF CAREGIVING? Are they receiving any Support? • 79% (2.6 million) of caregivers receive 10 hours of help a week (1.4 hours per day) from a paid worker or government agency

• 93% (3.1 million) did not receive any financial support or Federal tax credits from the government 3,500,000

93% N= 3,051,000

3,000,000

2,500,000 2,000,000 1,500,000 1,000,000

7% N= 233,000

500,000 0 Did Not Receive Financial Support

Received Financial Support

SO WHAT NOW? The Change Foundation’s Contribution • Wrapping up phase one of our engagements with caregivers • 30 interviews • 18 journey mapping • 10 engagement sessions • 2 town hall teleconferences • Currently conducting care providers/front line staff engagements • 20 focus groups • Next phase – launch funding opportunities to develop new ways of working with family caregivers in true partnership

THANK YOU Stephanie Hylmar Research Associate Tel. 416-205-1451 Email. [email protected]

Caregiver Distress Education Session Caregiver Support Programs Suzanne Saulnier LOFT Community Services

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BEHAVIOURAL SUPPORT SERVICES

Central LHIN Board of Directors Education Session April 26, 2016 Presented By: Suzanne Saulnier, RSW

LOFT Mission 

To help people achieve their optimal health and well-being in the community, LOFT offers unwavering support and hope. We serve people living with complex mental health, addictions, cognitive and physical health challenges, offering a range of services and housing delivered in the community. Through innovation, investment, expertise and collaboration we respond to changing needs in our diverse community.

LOFT 

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LOFT is a values-driven organization with a deep belief that each person has the ability to grow and change and that each person deserves the opportunity to do so. LOFT embraces the individual needs and aspirations of each client and encourages the development of communities of mutual support within our programs to enable each client to attain his or her potential. LOFT takes risks to reach out to those most in need, including people with multiple challenges who are often considered hard-to-serve and too often fall through the cracks as a result. We believe we make our best contribution to the community when we not only continue to provide core services, but also identify gaps in existing services and develop programs to reach out to people who cannot get the help they need. The LOFT name: LOFT stands for “Leap of Faith Together”. Our name refers to our philosophy of taking risks and reaching out in response to unmet and emerging needs. It also refers to the leap of faith our clients take when they join our programs and take the risk of believing that things can improve for them, and that recovery is possible.

Did You Know…… 

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In Canada, over 750,000 people are living with dementia; more than 70,000 are under the age of 65. By 2030, if nothing changes in Canada, the number of individuals with dementia will increase to 1.4 million

In the Central LHIN, 13,000 community-dwelling individuals have a dementia diagnosis – an increase of 57% since 2007 81% of these individuals also have 6 or more comorbid conditions

The Impact 

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Today, the combined direct (medical) and indirect (lost earnings) cost of dementia total $33 billion per year. The physical and psychological toll on family caregivers is considerable; 75% will develop mental health issues of their own. Family caregivers (1/3 of whom are over age 75) will spend a staggering 1.2 billion unpaid hours of care.

Seniors Mental Health 

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By 2041, rates of mental illness for those aged 70-89 are projected to be higher than any other age group. Males over the age of 80 have the highest suicide rate in Canada (31 per 100,000) It is estimated that 80 – 90% of individuals living in long term care suffer from depression; 12 – 21% suffer from some form of psychosis 45% of individuals living with dementia also experience Responsive Behaviours

What are Responsive Behaviours? Hurting Others

Repetitive sentences

Hiding Objects

Verbally Aggressive

Agitation

Sounds that are disruptive to others Throwing objects

PACING

Resistant to Care

Wandering Disrobing

Swearing

Physically Aggressive

Hitting Suicidal thoughts

Accusing

The Barriers ….. 

Responsive Behaviours can create barriers such as:    

 

Eviction from Long Term Care, Retirement Homes and Supportive Housing Accessing Long Term Care Homelessness Severe Social Isolation Access to Primary and Specialist Care Access to seniors and mental health supports services such as:    

Transportation Day Programs Assisted Living Services Meals on Wheels

The goal of LOFT’s Behavioural Support Teams is to create effective interventions around these responsive behaviours to reduce and remove these barriers. This allows individuals and their caregivers to regain choice and control, positive connections and HOPE……..

Health Care Redesign for Responsive Behaviours Our health care system is ill prepared for the growing number of older adults and their families/caregivers who live with responsive behaviours associated with cognitive impairment. Considering the burden of illness, quality of life issues, and escalating costs, system-wide redesign is warranted. The Behavioural Supports Ontario (BSO) project is a provincewide, regionally implemented, evidence-informed change strategy that utilizes quality improvement principles and knowledge translation best practices as critical enablers.

Canadian Journal of Community Mental Health, 2015, 34(1): 45-63, 10.7870/cjcmh2015-001

Value Statement “I am more than my behaviour.

Learn Who I Was, Understand Who I am and Treat Me with Dignity and Respect.” Central LHIN Value Statement

BEHAVIOURAL SUPPORTS ONTARIO (BSO) BSO is not a new service; rather, it is a province-wide valuebased and evidence-informed catalyst for change or a trigger for the realignment of existing services. 

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BSO creates a system that ensures people are treated with dignity and respect in an environment that supports safety for all, and is based on high quality and evidence-informed care and practices. BSO provides clients with the right care, in the right place and at the right time.

BSO Framework

Behavioural Support Services Mobile Support Team

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LOFT Community Services is the lead organization for the Mobile Support Teams serving the entire geography of the Central LHIN There are 3 teams serving the South, Central and North areas of the Central LHIN – support to all 46 Long Term Care Homes and the greater community at large. The Mobile Support Teams are made up of 52 staff that now have specialized expertise in behavioural supports. The team is mulitidisciplinary: 

RN’s

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RPN’s

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PSW’s

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Primary Response Workers

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Psychogeriatric Case Managers

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Behavioural Support Specialist

Service Components of the Teams Direct Client Service Behaviour Support Plans

Peer to peer coaching and mentoring of Staff/caregivers

BSO Pillars Integrated Service, Knowledgeable Capacity Building, System Coordination

Liaising and building on the Work of existing Outreach Teams

Supports with Transitions to ensure Optimum use of behavioural supports ie LTCH to Behaviour Support Unit, Hospital to LTCH etc.

Referral Sources  

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Community Care Access Centre Geriatric Outreach Teams (GOT) and Psychogeriatric Outreach Teams (PGOT) Alzheimer’s Society GEM Nurses and In-patient Hospital Long Term Care Homes PRC – Psychogeriatric Resource Consultants Retirement Homes Supportive Housing and Community Services Family Health Teams and Primary Care Physicians

Service Numbers 2015/16 Description

Community

Long Term Care

TOTALS

Referrals

663

657

1320

Clients Served

417

536

953

Direct Hours of Care

9,405

41,600

51,005

Direct Non Face-toFace Activities

5265

4478

9738

Support to Caregivers 

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Case Management  Advocacy  System Navigation and Referrals  Building Linkages Transitional Support  Smooth hand-off\clear accountability  Communication  Support: hands-on prior to, on the day of and post transition  Building linkages In-home behavioural support  Instrumental support – in-the-moment – coaching and mentoring role  Hands-on, on-site  Instrumental practical supports  Respite  Education  Formal Behavioural Support Plan

Transition Support

The “IPOD Shuffle” 

Arnie Winer is an 83 year old male who lives with his spouse in a private home. Arnie was referred to LOFT after presenting to hospital for statements of wanting to die and frequent crying. His spouse also reports that due to a history of wandering, Arnie has to be with her at all times. Arnie would become restless and irritated having to sit through her appointments, work hours, etc.

Arnie has always been someone who enjoys music and dancing. His nickname at a program he attends is “dancer.” His spouse tried to play music in the home but he would not engage, in part due to hearing loss. Arnie also has aphasia, making it challenging for him to communicate his thoughts, feelings, and wants verbally. LOFT introduced Arnie to an IPOD shuffle loaded with all his favourite dancing music. With minimal assistance, Arnie is able to use the IPOD on his own. His spouse has him listen to the IPOD during car rides, appointments and when she has visitors over. Arnie will dance, smile and sing along. The spouse has reported that he can now sit in one of her appointments for over an hour, showing no signs of agitation or restlessness. LOFT has also noticed that when he does listen to music that there is a slight change in his ability to communicate more clearly.

Pre and Post Pre and post test data is completed in both settings using the NPI (Neuropsychiatric Inventory) for Community and the CMAI (Cohen-Mansfeld Agitation Inventory) in Long Term Care. NPI measures frequency and caregiver distress associated with responsive behaviours and the CMAI measures frequency and disruptiveness in responsive behaviours.   

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CMAI (LTC): Average Decrease: Frequency (22%) Disruptiveness (20%) Average Decrease in Frequency vs Increase in Frequency vs No Change: Decrease (87%), Increase (11%), No Change (2%)

NPI (Community): Average Decrease: Intensity (Frequency and Severity) (56%) Distress (45%) Average Decrease in Intensity vs Increase in Intensity vs No Change: Decrease (84%), Increase (8%), No Change (8%) Average Decrease in Distress vs Increase in Distress vs No Change: Decrease (81%), Increase (11%), No Change (8%)

Caregiver Testimonals “LOFT Community Services were very helpful to my Mom and gave some good help and advice to me as a caregiver. Now I am able to understand and deal with my Mom’s behavioural changes. I appreciate the services very much and would like to thank everyone for their valuable contribution.” “Great support and LOFT made things easier for my and my family”. “The entire team was very efficient and provided much needed support in establishing programs and routines at this time”. “We have been truly blessed to have the BSS team work with our family – she actually showed us and the new paid caregiver how to talk to, treat and what cues our mother best to respond to.”

THANK YOU LOFT Community Services Suzanne Saulnier, RSW

Caregiver Distress Education Session

Peter Smith Full-time Caregiver

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Caregiver Distress Education Session

Sylvia White Part-time Caregiver

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Caregiver Distress Education Session Caregiver Predictors & Factors Raquel Betini, PhD University of Waterloo

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An overview of caregiver distress in Canada and factors which contribute to caregivers ability to continue to provide care Raquel Betini, PhD(c) interRAI Canada School of Public Health and Health Systems University of Waterloo Advisor: Dr. John Hirdes

April 26, 2016

Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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www.interrai.org

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Source: Health Council of Canada, 2012 www.interrai.org

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Source: Health Council of Canada, 2012 www.interrai.org

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Source: Health Council of Canada, 2012 www.interrai.org

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Source: Health Council of Canada, 2012 www.interrai.org

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Rates of caregiver distress by percentage of elderly home care clients at MAPLe level 4/5, by country 30

% Clients with Distressed Caregiver

ON 2012

25 20

ON 2010

IT

DL

WRHA

15

NS

FR UK

10 DK

5

SW

NO

NL CZ

IS

FI

0 0

10

20 30 40 % Clients MAPLe 4/5

Not to be reprinted without expressed permission of interRAI Canada

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www.interrai.org

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The Tipping Point: Factors Which Contribute to a Caregiver’s Inability to Continue to Provide Care

Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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Predictors of caregiver being unable to continue : If a Caregiver…

• Feels unable to start any or all day-to-day activities  5.1 X more likely that the caregiver is unable to continue taking care of care recipient. • Never, rarely or only sometimes has someone to count on  2.7X • Feels sad at least one day in the last 3 days  2.6x

• Takes care of adult and children in the family  2.1x • Never, rarely or only sometimes feels that “on the whole my life is good”  1.8x Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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Predictors of caregiver being unable to continue If a Care Recipient… • Resists care  7X more likely that the caregiver will be unable to continue taking care of the care recipient.

• Has sleeping problems  3.3X • Is needing more help managing IADL  2.7X

Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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Caregivers at Higher Risk compared to the Lowest Risk of Adverse Outcomes are… Health care utilization and self-reported health: • 2.5x more likely to visit the doctor or nurse practitioner • 4x more likely to report poor or fair health

Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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Implications for policy and service delivery • Need interventions to support caregivers who are assisting persons with high care needs in community • Cost savings from “off-loading” care from institution to family may be counterbalanced by increased health care costs for caregivers • Caregiver distress may limit the capacity to serve more impaired populations in community settings

• Important to assess caregivers in order to tailor support and services to their unique needs. Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

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Raquel Betini [email protected]

Not to be reprinted without expressed permission of interRAI Canada

www.interrai.org

Caregiver Distress Caregiver Policy Caroline Tapp-McDougall Canada Cares

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Caregiver Distress Education Session

Board & Presenters Discussion

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Part B – 3:50pm-4:30pm

Decision Making Framework

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LHIN Decision Making Framework

Board Education Karin Dschankilic, Senior Director, Performance, Contracts and Allocation & CFO April 26, 2016

Priority Decision Making Framework •

Pan-LHIN consistent or common framework for priority setting that informs decision making by LHINs

•

Best practice model that supports a consistent and transparent approach to decision making and priority setting by LHINs

•

Investment proposals are evaluated, ranked and funded based on scoring against 15 criteria organized into 4 domains

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Priority Decision Making Framework Domains

Criteria

System Alignment: Determines alignment with both Ministry and local priorities

Alignment: Degree of impact on advancing Integrated Health Services Plan and Annual Service Plan goals and priorities

System Performance: Contributes to the meeting of system goals and objectives

Sustainability: Impact on health service delivery, financial, and human resources capacity over time. The health system should have enough qualified providers, funding, information, equipment, supplies and facilities to look after people’s health needs.

Strategic Fit: Alignment with provider system role. Extent to which program/initiative is consistent with the provider(s) mandate and capacity compared to other providers in Ontario.

Integration: Extent to which program/initiative improves coordination of health care among health service providers, including LHIN funded and non-funded providers and community providers to ensure continuity of care in the local health system and provision of care in the most appropriate setting as determined by patient/client's needs. Quality: Extent to which program/initiative improves safety, effectiveness, and client experience of health services(s) provided. Access: Extent to which program/initiative improves physical, cultural, linguistic and timely access to appropriate level of health services for defined population(s) in the local health system.

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Priority Decision Making Framework Domains

Criteria System Values: Equity: Impact on the health status and/or access to service of recognized sub-populations where there is a Ensures local known health status gap between this specific population and the general population as compared to current practice/ service. The absence of systematic and potentially remediable differences in one or more aspects and system wide attributes of health across populations or population groups defined socially, economically, demographically, are being met culturally, linguistically or geographically.

including equity, innovation and community engagement

Efficiency: Extent to which program/initiative contributes to efficient utilization of health services, financial, and human resources capacity to optimize health and other benefits within the system. Client-Focused: Extent to which program/initiative meets the health needs of a defined population and the degree to which patients/clients have a say in the type and delivery of care. Innovation: Impact on generation, transfer, and /or application of new knowledge to solve health or health system problems; encouraging leading practices and innovation, building on evidence and application of leading practices. Partnerships: Degree to which appropriate levels of partnership and/or appropriateness of partnerships, both LHIN funded and non-LHIN funded, will be achieved in order to ensure service quality enhancement, improved comprehensiveness, optimal resource use, minimal duplication, and/or increased coordination. Community Engagement: Level of involvement of target population and other key stakeholders in defining the project and planned involvement in evaluating its impact on population health and key system performance. 72

Priority Decision Making Framework Domains

Criteria

Population Health: Determines contribution to the improvement of the overall health of the population

Health status (Health outcomes & Quality of Life): Impact on health outcomes for the patient/client and/or community, including risk of adverse events, and/or impact on physical, mental or social quality of life, as compared to current practice or service.

Prevalence: Magnitude of the disease/condition that will be directly impacted by the program/initiative as measured by prevalence (i.e., # of individuals with the condition in the population or subpopulation at a given time). Health promotion & disease prevention: Impact on illness and/or injury prevention and promotion of health and well-being as measured by projected longer term improvements in health and/or likelihood of downstream service.

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Priority Decision Making Framework 4 Steps for Evaluating Proposals: 1. Compliance 2. Ranking 3. Cost-benefit 4. System Readiness

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