Counseling Family Caregivers to Optimize

Family Support

Family Memory Care Program

Terry Barclay, PhD

Kristine Dwyer, LSW, MS

Heidi Haley-Franklin, MSW, LICSW

Partners

1) New York University– Mary Mittelman, DrPH &

Cynthia Epstein, CSW

2) Federal Admin on Aging – Alzheimer’s Disease

Support Services Program

3) Minnesota Board on Aging

4) Alzheimer’s Association – Minnesota/North Dakota

Chapter

10 Sites Across Minnesota

Metropolitan AAA Volunteers of America,

Minneapolis Alzheimer’s Association Metro

Regional Office

MN River AAA Mayo Health System

– Waseca Clinic– Madelia Clinic– Immanuel St Joseph’s

Arrowhead AAA Carlton County Public Health Range Respite Northwoods Hospice/Respite

Partners

Central MN AAA Rural Stearns Faith-In-Action

Southeastern MN AAA Mower County Caregiver

Support Program

AAA Regions

3/11/2010

Minnesota TribesBois ForteGrand PortageLeech LakeWhite EarthRed LakeFond du Lac

Original Study

New York University– Spouse Caregiver Intervention 1987-2009– Mary Mittelman, DrPH & Cynthia Epstein, CSW

Randomized controlled trial– Test the efficacy of counseling and support for family

caregivers– Evidence-based model

406 spouse-caregivers of people with Alzheimer’s disease– All living with the person with AD at intake with at

least 1 close relative in the area

The Intervention

First of 3 grants awarded in 2007, project began in 2008

Within 4 to 6 months:– Assessment– Initial individual counseling session– 4 family counseling sessions– Second individual counseling session

Over the entire course of the disease:– Participation in a support group – Telephone consultation for caregiver or family member

as needed

Time to Nursing Home Placement of Patients Is Delayed by Counseling and Support of Caregivers

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0.8

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0 1 2 3 4 5 6 7 8 9 10 11 12

Years of follow-up

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Treatment

Usual Care

Mittelman MS; Haley, WE; Clay, OJ and Roth, DL: Neurology, 2006.

Median difference Median difference = 557 days= 557 days

Proposed Outcomes for MN

Reduced negative impact (burden) from care giving

Decreased level of depression

Enhanced and widened network of support– Family, friends, neighbors, people from

community, church members, etc. Average 18 month delay in nursing home

placement

Program Progress

147 spousal caregivers enrolled as of January 31, 2011– 95 have completed the intervention– 23 are in the process of completing

Drop out rate is 20%, similar to the original intervention– Primary reasons for failure to complete include death of

care receiver or caregiver, NH placement, or failure to respond to repeated contacts.

Program Progress

96% of responding caregivers indicate that participation is helpful

Other outcomes achieved:– Reduction in depression – Reduced negative impact of care receiver behaviors – Enhanced support network effectiveness and

composition – Reduced burden

Common Themes

Dementia knowledge, education Social support and respite Emotional health and coping Role changes Family dynamics and cohesion Communication Physical health Support for PWD Challenging behaviors Planning for the future

Emotional Health and Coping Vignette

Being a caregiver can lead to increased potential for symptoms of depression , burden, and isolation.

Goal:

Reduce symptoms of these variables so caregivers can cope better with the responsibilities of caring for someone with dementia.

Family:

Samuel (84 yo) husband caring for wife (82 yo) with moderate Alzheimer’s disease. Samuel scored high on CESD screen and high burden scores. Couple has 3 local children. Couple isolated due to incontinence concerns.

Strategies:

Family Memory Care & Support Group

Talk with MD

Community Activities, ADC, and Family Involvement

Support System Vignette• Social support may include both formal and informal resources• Goals:

• Widen and deepen circle of support• Identify the support tasks that can be provided by each support entity

• Family:• Phyllis (78), lives with spouse (79) with AD in a rural county• 6 adult children, 2 are local, 3 in-state, 1 out-of-state

Reliance upon:• Siblings, adult children and spouses, and grandchildren• Neighbors and friends • Church family• Adult day program• Professionals (Human Service and Medical)• Support group• Participation in Family Memory Program

Engagement & Family Dynamics Vignette

“The whole is greater than the sum of its parts”—Family Systems Theory

Goal:

Engage the family in having a greater understanding about dementia and facilitate positive communication by creating short and long-term planning. Sometimes have to rely on “common goals.”

Family:

Mabel (82 yo) wife with Parkinson’s caring for spouse (86 yo) with moderate Alzheimer’s disease (2nd marriage for both). 7 kids (4 his, 3 hers), all with differing opinions (“observed care giving”)

Strategies:

Family Memory Care & Meeting of the Minds

All agreed that each parent deserved to be healthy, happy, and safe.

“Uneasy Caregiving Alliance”

Role Change Vignette Changes in person with AD alter the nature of roles within the relationship

– marriage partnership, intimacy, allowing others in to help

Caregivers will progressively need to assume new roles previously filled by the person with AD

May be difficult to strike a balance between maintaining spouses autonomy and stepping in to avoid problems

Kathy (62) caring for husband (68), no children or close family

Roles Changes: “Head” of the household Wife to fulltime caregiver Financial manager Meal planner, cook Driver Pharmacist Home maintenance coordinator Social planner

Discussion

Q & A