Counseling Family Caregivers to Optimize Family Support Family Memory Care Program

1. Counseling Family Caregivers to OptimizeFamily SupportFamily Memory Care Program Terry Barclay, PhD Kristine Dwyer, LSW, MS Heidi Haley-Franklin, MSW, LICSW

2. New York University Mary Mittelman, DrPH & Cynthia Epstein, CSW Federal Admin on Aging Alzheimer’s Disease Support Services Program Minnesota Board on Aging Alzheimer’s Association Minnesota/North Dakota Chapter Partners

3. 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 10 Sites Across Minnesota

4. AAA Regions Minnesota Tribes Bois Forte Grand Portage Leech Lake White Earth Red Lake Fond du Lac 3/11/2010

5. 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

6. 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

8. Time to Nursing Home Placement of Patients Is Delayed by Counseling and Support of Caregivers Median difference = 557 days Mittelman MS; Haley, WE; Clay, OJ and Roth, DL: Neurology, 2006.

9. 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

10. 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.

11. 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

12. 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

13. 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

14. 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

15. 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”

16. 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

17. Discussion Q & A