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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
0
0.2
0.4
0.6
0.8
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0 1 2 3 4 5 6 7 8 9 10 11 12
Years of follow-up
Pro
bab
ility
of
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om
e p
lace
men
t
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