Conversations on Supporting Family Caregivers in Acute and Long-term CareDr. Jasneet Parmar, Associate Professor, Dept. of FM, U of ABMedical Director, Network of Excellence in Seniors’ Health and Wellness, Covenant Health

Medical Lead, AHS EZ Home Living and Transitions

Objectives

By the end of this session you will learn about:

• Barriers and facilitators for supporting family

caregivers of seniors.

• Areas of improvement for supporting family

caregivers of seniors.

• Proposed system and policy changes for

supporting family caregivers of seniors.

“It’s not if, it’s when you

will be a family caregiver.”- Nadine Henningsen, President, Carers Canada

Family Caregivers

Definition: The World Health Organization (WHO)

defines family caregivers as those who provide

informal unpaid care*.* World Health Organization and Alzheimer's Disease International. Dementia: A

public health priority. Geneva, Switzerland: World Health Organization; 2012.

Numbers of Caregivers

• According to Stats Canada, 28% of population are caregivers:

o estimated (36,146,780 * 0.28 =) 10.1 caregivers in Canada

(2016).

o estimated (4,252,879 * 0.28 =) 1.2 Caregivers in Alberta (2016)

(http://www.statcan.gc.ca/pub/91-520-x/2010001/tablesectlist-listetableauxsect-eng.htm)

• Nearly 3 in 10 people are family caregivers (Turcotte, 2013)

General Social Survey (Stats Canada, 2012):

Estimates put the number at 8.1 million family

caregivers in Canada.

8.1 million carers

60% working

48% caring for aging parents

10% >30hrs/week

20%need financial help

50% tired and anxious

44% 45-64 yrs of age

Most caregiving is in

the context of aging

parents or in-laws

(Sinha, 2012).

Significance: FCGs ‘the shadow workforce’

(Butler,2010); (Kitts,2012); (Hollander,2009); (Sinha, 2012)

Family caregivers are the backbone ‘the shadow

workforce” of our society and health care system

• increasingly older population, particularly those 80+

– resultant growth in healthcare services

– increased inability of families to provide care for seniors in their own

homes

– prevalence of chronic diseases, including dementia, increases with age (1 in 3 of those 80+ have at least four chronic conditions - Butler, 2010)

Significance: Consequences faced by FCGs

(Butler,2010); (Kitts,2012); (Hollander,2009); (Sinha, 2012)

There is increasing evidence that caregiving is being provided at

significant physical, emotional and financial costs to the caregiver:

Family caregivers stretched beyond their capacity, reporting high levels

of distress (Kitts, 2012):

– 40-50% of seniors with high needs (on homecare: high maple scores)

have distressed caregivers

The burden on and distress among family caregivers is ever increasing (CIHR: Supporting Caregivers, 2010)

– provide >21 hours of care per week

– support seniors experiencing depression, moderate to severe cognitive

decline, and aggressive behaviours

Significance: Consequences faced by FCGs

• Increasingly overburdened and not recognized as part of the

health care system (Bookman & Harrington, 2007).

• Caregiving is being provided at significant physical, emotional

and financial costs to the caregiver (Dumont et al 2009;

Turcotte, 2013)

• Costs of unpaid caregiving estimated at $25 billion (Hollander,

Liu & Chappell, 2009).

Significance: Consequences faced by

FCGs (Ankuda et al, 2017)

• Stressed out caregivers using ER visits for

respite:

“We need to do a better job of identifying and supporting

caregivers experiencing distress, in order to help caregivers

feel better and hopefully improve outcomes in older adults

with disability.”

Deborah Levine, M.D., M.P.H.

Supporting Family Caregivers of Seniors within Acute

and Continuing Care Systems – Symposium 2016

• One-day symposium, August 31, 2016

• 106 attendees / 21 stakeholder organizations

– 38 frontline healthcare providers

– 36 healthcare managers

– 16 seniors service organizations

– 8 family caregivers

– 5 academics

– 3 policy makers

Supporting Family Caregivers of Seniors within Acute

and Continuing Care Systems – Symposium 2016

1. Attendees considered how to best involve and support

family caregivers in the healthcare setting, including

discussions on:

Practices

Policies

Culture

System change

2. Attendees contributed their input into conversation circles

to identify:

Current issues surrounding family caregivers

Recommendations for improving family caregiver involvement

and experiences

Conversation Circles

• Attendees explored six topics in the conversation circles:

– Orientation and Education of Healthcare Providers to Increase

Understanding of Caregiver Needs and How to Assist Them

– Culture Change Needed within our Systems to Acknowledge,

Respect and Honour Family Caregivers

– Supports Needed to Engage, Empower and Foster the Resilience

of Family Caregivers

– Tools and Processes Available to Help Identify and Assess

Caregiver Burden

– Palliative Care and End of Life Supports Desired by Family

Caregivers

– Systems Change Needed from a Policy and Practice Perspective

to Ensure that Family Caregiver Supports and Resources are

Made Available

1. Orientation and Education of Healthcare Providers to

Increase Understanding of Caregiver Needs and How to

Assist Them

Issues Identified Recommendations

– Limited education and training

for healthcare providers

– Different education and training

for acute and continuing care

settings

– Family caregivers not

recognized or valued as part of

the care team

– Communication is impacted by

the lack of recognition or value

• Educate healthcare providers

• Use similar approaches and

training across care settings

• Develop communication skills in

healthcare providers

2. Culture Change Needed within our Systems to

Acknowledge, Respect and Honour Family Caregivers

Issues Identified Recommendations

– Time pressures leave little

time to engage with family

caregivers

– System is dominated by a

medical model

• Move to a person and family

centered approach

• Welcome family caregivers in to

our care settings

3. Supports Need to Engage Empower and Foster the

Resilience of Family Caregivers

Issues Identified Recommendations

• Lack of information and

supports

• Healthcare providers lack the

knowledge on how to engage,

empower and foster resilience

• Healthcare providers are not

aware of current resources

• Healthcare providers need to be

proactive in their support by:

o Developing and maintaining

a list of resources

o Creating a provincial

strategy

o Helping family caregivers

navigate the system

4. Tools and Processes Available to Help Identify and

Assess Caregiver Burden

Issues Identified Recommendations

• Inconsistencies in identifying

and assessing family caregiver

stress/burden

• Healthcare providers not

adequately or consistently

trained to identify stress/burden

• Conducting multiple caregiver

burden assessments is

problematic

• Acknowledge family caregiver

stress/burden

• Train healthcare providers to

identify family caregiver

stress/burden

• Build systems and mechanisms

for follow-up including supports

5. Palliative Care and End of Life Supports Desired by

Family Caregivers

Issues Identified Recommendations

• Healthcare providers are not:

o trained to support patients

and family caregivers at end

of life

o aware of the palliative and

end of life resources

available

• Educate healthcare providers

about palliative care and end of

life supports

• Train healthcare providers to

communicate with patients and

family caregivers about

available resources

6. System Change is Needed from a Policy and Practice

Perspective to Ensure that Family Caregiver Supports

and Resources are Made Available

Issues Identified Recommendations

• Current family caregiver support

polices and programs:

o have a narrow approach

o do not provide adequate

financial support

• Legal constraints prohibit family

caregivers from obtaining

necessary health information

• Develop comprehensive policies

that provide financial support

• Involve family caregivers so they

can identify financial resources

and supports needed

• Change privacy legislation so

family caregivers can access the

health information they need

Key Input from Attendees

• Establish education and training for all healthcare providers

(including end of life and palliative care) that is consistent

across all care settings.

• Improve communication between healthcare providers and

family caregivers, and between healthcare providers across

care settings.

• Address healthcare provider time constraints to allow for

meaningful engagement with family caregivers

• Move to a person and family-centered approach that welcomes

and integrates family caregivers as part of the care team.

• Develop and maintain an easily accessible, comprehensive list

of resources that support family caregivers.

Key Input from Attendees• Increase healthcare provider awareness of current resources

and supports available to family caregivers.

• Acknowledge family caregiver stress and burden; train

healthcare providers to identify caregiver stress and burden

and to follow-up when required.

• Develop comprehensive programs and policies that provide

adequate financial support to family caregivers.

Next Steps

A second symposium was held August 30, 2017 to

disseminate findings, identify specific programs, policies and

practices that can better support family caregivers and

advocate for change.

Current supports do not adequately compensate family

caregivers and they often end up giving and giving until they

have nothing left. -Attendee to Supporting Family Caregivers of Seniors within Acute and Continuing Care

Systems, 2016

Network Website• The Network’s website has many resources:

seniorsnetworkcovenant.ca

– Organized into tabs for:

• Resources (a list of documents)

• Learnings

– Innovation Fund Projects

– Network Initiatives

• A key caregiver resource is the Inventory of

Resources and Supports for Caregivers in Alberta

– Located on the “Learnings” tab under “Network

Initiatives”

• “Resources and Supports for Caregivers in Alberta”

Inventory of Resources and Supports

for Caregivers in Alberta

Inventory of Resources and Supports

for Caregivers in Alberta

• A main inventory

document lists the

resources and supports

– Includes information on all

aspects of care

• Smaller, focused

documents used for

specific topics, including:

– Dementia

– Palliative and End-of-Life

Care

Inventory of Resources and

Supports for Caregivers in Alberta

Main Inventory:

Inventory for Palliative and End

of Life Care:

www.seniorsnetworkcovenant.ca/wp-

content/uploads/2017/10/Inventory-of-Caregiver-Resources-for-

Palliative-and-End-of-Life-Care-May-25-2016.pdf

www.seniorsnetworkcovenant.ca/wp-

content/uploads/2017/01/Resources-Caregivers-Inventories-of-

Resources-and-Supports-for-Caregivers-in-AB-Doc-20160721-1.pdf

Main InventoryTable of Contents

• The Table of Contents

is hyperlinked to allow

you to click to get to

the section you want

to see

Main Inventory:

• Along with inventories

for support

organizations and

resource documents,

there are specific

sections for:

– Palliative and End-of-

Life Resources

– Financial Supports

Objectives

By the end of this session you will learn about:

• Barriers and facilitators for supporting family

caregivers of seniors.

• Areas of improvement for supporting family

caregivers of seniors.

• System and policy changes for supporting family

caregivers of seniors.

References: • Ankuda, C. K., Maust, D. T., Kabeto, M. U., McCammon, R. J., Langa, K. M. and Levine, D. A. (2017), Association Between

Spousal Caregiver Well-Being and Care Recipient Healthcare Expenditures. J Am Geriatr Soc. doi:10.1111/jgs.15039

• Bookman, A., & Harrington, M. (2007). Family caregivers: A shadow workforce in the Geriatric Healthcare System. Journal of

Health Politics, Policy and Law, 32(6), 1005-1041.

• Butler-Jones D. Chief Public Health Officer's Report (2010).The State of Public Health in Canada: Growing Older- Adding Life

to Years. Report on State of Public Health in Canada. Retrieved from http://www.phac-aspc.gc.ca/cphorsphc-

respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf

• Canadian Institute for Health Information (CIHI, 2010): Supporting Informal Caregivers—The Heart of Home Care. Retrieved

from https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf.

• Canadian Institute for Health Information (CIHI, 2011): Health Care in Canada — A Focus on Seniors and Aging. Retrieved

from https://secure.cihi.ca/free_products/HCIC_2011_seniors_report_en.pdf

• Dumont ,S., Turgeon, J., Allard, P., Gagnon, P., Charbonneau, C., & Vezina, L. (2006). Caring for a loved one with advanced

cancer: Determinants of psychological distress in family caregivers. J Palliat Med. Aug; 9(4), 912-21.

• Hollander M, Guiping L, Chappell N. (2009), Who Cares and How Much? Healthcare Quarterly, 12 (2):42. Kitts J. Health

council of Canada Report on homecare priorities (2012), ‘Seniors in need, Caregivers in distress’. Retrieved from

http://www.alzheimer.ca/durham/~/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf

• Sinha, M. Results from General Social Survey (2012), ‘Portrait of Caregivers’, Statistics Canada. Retrieved from

http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.htm

• Turcotte, M ( 2013). Insights on Canadian Society – Family caregiving: What are the consequences? Retrieved from

http://www5.statcan.gc.ca/olc-cel/olc.action?ObjId=75-006-X201300111858&ObjType=47&lang=en&limit=0

• World Health Organization and Alzheimer's Disease International. Dementia (2012): A public health priority. Geneva,

Switzerland: World Health Organization. Retrieved from

http://www.who.int/mental_health/publications/dementia_report_2012/en/