Carol J. Whitlatch, PhD Heather L. Menne, PhD Margaret Blenkner Research Institute

1. Dyadic Interventions for Family Caregivers and Care Receivers in Early-Stage Dementia Carol J. Whitlatch, PhD Heather L. Menne, PhD Margaret Blenkner Research Institute Benjamin Rose Institute 11900 Fairhill Road Suite 300 Cleveland OH 44120 cwhitlat@benrose.org hmenne@benrose.org 3 june 2009 2009 Alzheimer’s Disease Supportive Services Program (ADSSP) Annual Grantees and Partners Meeting Arlington, Virginia This presentation is made possible by grants from the Administration on Aging (90CG2566; 90AI0004; 90AE0329), National Institute on Aging (P50 AG-08012), National Institute of Mental Health (RO1-MH070629), and The Retirement Research Foundation.

2. Background • Care partners (caregivers and care receivers) are concerned with each other’s well being, BUT they do not always know each other’s preferences for care. • Developing a mutual understanding about preferences for personal care, living arrangements, and the use of formal services plays an important role in the ability of care partners to make crucial care decisions throughout the course of dementia. • Persons with mild to moderate levels of cognitive loss: 1) can answer questions with a high degree of reliability and validity; 2) can contribute and participate actively in research interviews; and 3) have strong opinions about their care preferences. • Increasingly, research is emphasizing the importance of including input from both care partners.

3. Obstacles And Benefits To Intervening With Both Care Partners • OBSTACLES • Access • Confidentiality • Privacy • Fear of losing services • Lack of instruments that assess both • Reimbursement can be problematic • BENEFITS • A systems approach • A holistic approach • Cognitively and physically impaired persons can contribute • Caregivers don’t always know what relatives want • Empowers both caregiver and care receiver

4. Early Diagnosis Dyadic Intervention: Goals • Help care partners develop positive communication patterns • Increase the care partners’ knowledge and understanding of available services, care values, and preferences for care • Increase the active participation of persons with early- stage dementia (PWESDs) in his/her care plan • Improve care partners’ well being and sense of self-efficacy in managing disease related issues

5. Early Stage Dyadic Intervention

6. Dyadic Intervention (cont’d)

7. Results from EDDI Process Results • Both care partners were accepting of EDDI and able to engage in discussions about the care process • Visual aids were helpful • PWESD could complete most or all of the interview and intervention Outcomes • Care partners were able to participate without experiencing more strain or worsening of mood or depressive symptoms • Satisfaction for EDDI was generally higher than for the control group • Well-being generally improved for both members of the EDDI dyads, as compared to the control group

8. “Everything is so new. I’m just getting used to his different moods. I can’t keep up with them sometimes. Thank God I’m here to do it. I worry what would happen to him if I weren’t here.” Wife who cares for her husband with Alzheimer’s Disease “[I] liked everything about the this session (#1). It was the first opportunity I had to talk with a counselor about my problem.” Husband with dementia who is cared for by his wife

9. Development of the Circles Diagram • Care partners who participated in our early dyad research commented that our questions made them realize that they needed to talk about care preferences with their relative. • Designed to help care partners think about and discuss their expectations for current and future care. • Visual presentation and manipulation of magnets that represent various care tasks empowers the care receiver and helps both care partners recognize imbalance of preferences.

10. Care Preferences: Care Receiver Who would you prefer to help you with…? • Bathing  Laundry • Toileting  Transportation • Getting in/out of bed  Hobbies • Housework  Help at night • Cooking  Feeling bored • Legal/financial matters  When alone

11. Care Preferences: Caregiver about the Care Receiver Who do you think your relative would prefer to help him/her with…? • Bathing  Laundry • Toileting  Transportation • Getting in/out of bed  Hobbies • Housework  Help at night • Cooking  Feeling bored • Legal/financial matters  When alone

12. Care Preferences: Caregiver Who would you prefer to help your relative with…? • Bathing  Laundry • Toileting  Transportation • Getting in/out of bed  Hobbies • Housework  Help at night • Cooking  Feeling bored • Legal/financial matters  When alone

13. Circles Diagram Caregiver Formal Service Providers Family & Friends Who would you prefer to help you/your relative with…?

14. Circles Diagram Both Prefer • CR Preference • Toileting • Housework • Feeling bored • When alone Caregiver • Bathing • Laundry • Transportation • Getting in/ out of bed • Cooking • Hobbies • Help at night • Legal/ financial matters** Family & Friends Family & Friends Family & Friends Formal Service Providers • CG Preference • Feeling bored • When alone • CG Preference • Feeling bored • When alone • CG Preference • Feeling bored • When alone • CG Preference • Toileting • Housework • Legal/ financial matters** Who would you prefer to help you/your relative with…?

15. Future Directions • Using the Circles Diagram with families not facing issues related to cognitive impairment. • Use of the Circles Diagram in one-on-one discussions with clients to help them prioritize and identify areas of concern. • Expand the listing of care values and preferences that are considered: • Safety concerns • Money issues • Improve and further develop measures to assess both care partners.

16. Future Directions (cont’d) • Reinforce the importance of continued engagement in decision making for the older adult/impaired individual, taking into account the context of the relationship and the caregiver’s needs and preferences. • Continue to identify ways to balance the needs and priorities of both care partners. There is much to be learned about interventions and techniques that help caregiving family members.

17. References Whitlatch, C.J., Judge, K., Zarit, S.H., & Femia, E. (2006). Dyadic intervention for family caregivers and care receivers in early-stage dementia. The Gerontologist, 46(5),688-694. Whitlatch, C.J. & Menne, H.L. (In press). Don’t forget about me: Decision making by persons with dementia. Generations.

18. Margaret Blenkner Research Institute Established in 1961, the Margaret Blenkner Research Institute of the Benjamin Rose Institute conducts applied aging research to enhance the lives of older adults and those who care for them. MBRI shares its knowledge with local, national, and international audiences. MBRI’s current program focuses on four major topics: Services and Interventions; Family Caregiving; Quality of Long-Term-Care Services; and Program Evaluation.