The Many Faces of Family Caregivers

1. The Many Faces of Family Caregivers David W. Coon, PhD Associate Vice Provost for Research Collaborations Senior Associate Dean for Faculty & Research Virginia G. Piper Charitable Trust Faculty Supported by the National Institute on Aging, the National Institute of Nursing Research, the U.S. Administration on Aging, and the State of Arizona

3. People…. • There are four kinds of people in the world. Those who • have been caregivers, • are currently caregivers, • will be caregivers, • will need caregivers. Rosalynn Carter

4. Why is Caregiving Important? • An estimated 44 million Americans provide unpaid care to another adult • More than 1 in 5 adults in the U.S. • Family care is the most important source of assistance for people with chronic conditions who need long-term care (LTC) • Without this “informal” workforce, the entire health care and LTC system would be in jeopardy • Clearly, this expands when considering kinship care and care for children and teens.

5. Value of Family Caregiving is Staggering • Economic value of informal care is measured as the cost of replacing informal (unpaid) care with formal (paid) care. Estimated value of this family care is over $375 billion (AARP). • In 2009, nearly 11 million Americans provided 12.5 billion hours of unpaid care to family & friends with ADRD. • Estimated value of this unpaid care: Almost $144 billion • More than what Medicare and Medicaid spent combined on those with Alzheimer’s disease. • Generation Alzheimer’s (Alzheimer’s Association 2011)

6. Caregiving is Beyond the Critical Tipping Point • Family caregivers must… • Care for patients discharged “sicker and quicker” • Navigate health care systems that lack care coordination • Deal with “information overload” and choices • Manage difficult medication schedules and sophisticated technology in the home • Juggle competing demands of work and care • Often provide/coordinate caregiving long distance • Locate, access, and monitor quality paid help

7. All I ever needed to know…I learned in kindergarten.Robert Fulghum

8. I don’t think Robert Fulghum was a family caregiver. D.W. Coon

9. Family Caregivers: Who Are They?

10. Caregiver - The Hidden Patient AT RISK FOR: • Depression (>50% caregivers are depressed) • Extreme fatigue, stress, anger/frustration • Anxiety, upset, feeling overwhelmed • Financial loss • Social isolation • Physical health problems/Morbidity • Mortality Coon, Gallagher-Thompson & Thompson, 2003 (Eds.), Innovative Interventions to Reduce Caregiver Distress, Springer; Ory et al., 1999, The Gerontologist, 37, 804-815; Schulz, et al, 1995. The Gerontologist, 35, 771-791; Schulz & Beach, 1999, JAMA, 282, 2215-2219

13. Why Investigate Diversity in Caregiving?

14. Recruitment • Retention • Assessments/ • Instruments Addressing Diversity • Interventions • Services • Dissemination • Adoption

15. Sociocultural Influences on Caregiving The meaning of illness Who is “family” Values and attitudes Decision-making concerning elders Style of communication View of outside help and authority Definitions of acceptable behavior Coping strategies

16. “Normal” behavior is universal and applies to all cultures in the same manner. Historical background is irrelevant to immediate issues. Independence is desirable; dependence is not. We need to help the individual “adapt” to institutions. Services are to support the individual’s (not his/her group’s) growth and development. We already know our biases and culturally-learned assumptions. *Adapted from Paul P. Pederson Culturally-Biased Assumptions of Professionals

18. Examples Drawn from Dementia Family Caregiving

19. Cautionary Statement • A matter of degree • Exceptions to the rule • Recent review, very similar findings among work conducted with other types of family caregivers • Disentangling culture, race/ethnicity from other variables (income, education, acculturation, values) • Selection bias (gender, treatment, geography, language, relationship) • Need more investigation with all, especially… • Underrepresented groups, rural, grandparents caring for grandkids, caregiving beyond dementia. • Particularly true in terms of effective interventions and diversity.

20. Variations in the Impacts of Caregiving Caucasians (non-Hispanic Whites): chronic fatigue, depression, anxiety, burden, self-reported anger & frustration, plus substantive risk for mortality African Americans: less self reported depression and “burden” but less engagement in self-care behavior & poorer self-rated health Latinos: high levels depression and anxiety & greater physical complaints BUT less distress over behavioral problems of the care-recipient & less reported “burden” Chinese: less self-reported depression and “burden” but significant problems managing difficult behaviors along with significant family conflicts about caregiving

21. Opportunity to give back Serve as a role model Draws family members closer Prevention of loved one’s deterioration Increase self-esteem Enhanced sense of purpose or meaning Feeling appreciated (Farran et al., 1991: Kramer, 1007; Miller & Lawton, 1007; NAC/AARP, 2004) Is This All There Is?Positive Aspects & Caregiver Gain

22. African Americans report higher PAC levels than non-Hispanic Whites (Haley et al., 2004; Hilgeman et al., 2009). Latinas reported higher PAC levels than Anglo women. Less acculturated Latinas reporter higher PAC levels than their more acculturated counterparts (Coon et al., 2004). PAC played a role in care recipient placement such lower PAC levels accounted for greater rate of placement by more acculturated Latinas compared with less acculturated Latinas and Anglo women (Mausbach, Coon, et al., 2004). Variations in Positive Aspects of Caregiving?

23. Intervention Strategies with African Americans Caregivers • Teach concrete problem-solving skills with a practice base. • Emphasis on physical health • Relief for economic burdens of caregiving • Teach advocacy skills and mobilize resources including African American national organizational partnerships. Storytelling/multimodal approaches. • Integration of religiosity/spirituality

24. Suggestions for Working Effectively With Latino Caregivers • Platicar- take time to get to know the person & share personal information about yourself (personalismo). • Attend to family first. Validate complementary yet conflicting feelings • Use bilingual/bicultural staff whenever possible. Recognize acculturation status. “Papers”. • Family involvement. Avoid the auto-assumption of multiple caregivers. • (Gallagher-Thompson, Arean et al., 2003; Coon et al., 2004; Talamantes et al., 2006)

25. Strategies for Chinese caregivers • Draw on cultural strengths-- value of education and professionals • Psychoeducational approach is appealing for many family members. May need individual approach • Help acknowledge psychological distress • Less likely to acknowledge initially • Assess undetected depression • Assess non-caregiving stressors • Remove practical barriers • (Gallagher-Thompson et al., 2008; 2010; Wang et al., 2006)

26. Working with American Indian, Alaskan Native, First Nations Families • Little “data”. Diversity across groups. Heterogeneity within groups. Histories distinct and shared. • Community-based and peer led education using American Indian educators or peer counselors to inform. • Unwanted intervention vs. denial. • Spiritual practice and religious faith leaders as partners. Integration of traditional healers with Western model in accordance with family’s wishes. • Begin with indirect communication approaches focused on specific behaviors. Small groups with education and family inclusion in care planning (Hendrix & Swift Cloud-LeBeau, 2006).

27. Gender Differences in Caregiving Differences in: • personal care and levels of care • choice in becoming a caregiver • levels of stress, emotional strain, and subjective burden • coping styles and support networks • use of formal and informal support

28. Spouse vs. adult child caregivers Differences in: • types of care • level of burden • health problems • identification as caregivers • social isolation • multiple roles and related role strain • “others” as respite users?

29. Rapid Growth of the Very Old US. Bureau of the Census (2008)

30. Age range 85-107. Investigated differences between those who did (n=50) and did not provide care (n= 135) within the past 5 years (n = 50). Large proportions were either community dwelling (48.9%) or lived in independent-living facilities (39.8%). Caregivers reported higher levels of cognition, physical activity/exercise (e.g., weekly participation in strength and flexibility training and/or cardiovascular activities), self-confidence, sense of being useful and greater problem solving ability. Oldest old caregivers also demonstrated lower levels of upset by social demands and less functional impairments, but also reported spending more days alone and less social support from others. Keaveny, Walker, Felix, & Coon, 2010 Who is the Caregiver? The Oldest Old as Caregivers

31. LGBT Caregivers • Limitations in research and clinical literature • Most focused on AIDS-related caregiving • Over-represent middle- and upper-income white gay men from urban areas • Partners and friends are primary support • Legal and financial issues • Concerns about lack of respect for relationship • Family of origin • Employers • Providers • Heterosexism & Concerns about substandard care

32. Sociocultural Influences on the Experience of Depression

33. Assessment

34. Focus on physically impaired care recipient Services (e.g., respite) provided based primarily, if not solely, on care recipient Screens often remain limited, particularly in terms of behavioral health needs Behavioral health/emotional well-being Coping Informal support Even still, often cumbersome Ignore the care triad (CR, CG & SP) An Opportunity:Screening & Assessment Tools

35. Arizona Caregiver Assessment Tool (CAT) To assist in respite allocation and identification of relevant services for the caregiver (Pilot in Lifespan Respite Grant) Drawn from the scientific and clinical literature Refined through focused discussions with service providers, administrators, family caregivers Tied to assessment of care recipient Scales/items with history of use with diverse groups of caregivers Arizona CAT

36. CAT: Development Process • Domains • Caregiver risks • Caregiving activities/responsibilities and impact • Physical health • Stress/strain/mood/burden • Potential resources • Informal social support • Pleasant activities/leisure time satisfaction • Project evaluation(administered only as part of the post evaluation)

37. Involvement:Recruitment and Retention

38. Multicultural Sample 614 participants in sample 3 ethnic/racial groups

39. Enrollment Success

40. Confianza Triangle of Successful Recruitment • Community agency establishes trust with Latino individuals • Researcher establishes trust with the agency • Researcher indirectly establishes trust with the individual

41. BUT……. WHAT ABOUT MIAMI???

42. Intervention Programs:

43. Intervention Programs and Services: • Availability: What is available and to whom? • Accessibility: How does one access it? What impedes access? • Acceptability: How does it meet needs? How does it fit with who I am/we are?

44. Community Partners Wish List • Evidence based; empirically supported • User Friendly- Staff Ready (AKA minimal training time) • Complementary to existing programs • Respite, care management, support groups • Appeal to & be effective with caregivers from diverse backgrounds • Less “intensive” and less structured “time away” • But POWERFUL! (The “Pill”, the Silver Bullet) • …and, preferably something I already do.

45. We Got an App for That!

46. Chronic Stress Trajectoryof Caregiving for Older Adults Placement CG/CR Trajectory InitiateIADL CG ExpandADL CG Death Psychological Appraisal Benign Distress Distress Relief Psychiatric/PhysicalMorbidity ContinuedDepression/ Reengagement Health Effects Minor Recovery Death

47. What’s Successful?Implementing Caregiver Interventions • Education alone. • Care Management. • Respite. • Support Groups. • Environmental. • Technological. • Education & Skill Training (CR, CG, both). • Psychotherapy/Counseling. • Multi-component. Coon, D. et al. (in press). Family Caregivers of Older Adults. In F. Scogin, Evidence-based Psychological Treatments for Older Adults. American Psychological Association. Gallagher-Thompson, D. & Coon, D.W. (2007). Evidence-Based Psychological Treatments for Distress in Family Caregivers of Older Adults, Psychology and Aging, 22, 37-51.

48. CarePRO: Care Partners Reaching Out • 10 Weeks (Modification of CWC) • Alternating Weeks of Psychoeducational/ Skill-building Groups & Coach Calls • TBR & Problem solving • Mood management • Stress management • Pleasant Events • Effective communication • Home Practice • Respite offered through area agencies on aging • Over 600 Arizona and Nevada family caregivers in the next 3 years. • Strategies used effectively with White, Hispanic, African American and Chinese/Chinese American.

49. Tailoring Psychosocial Interventions to Latino Caregivers • Revise Recruitment Strategies. • Platicarand Socialization. • Validate complementary yet conflicting feelings. • Role and reality. • Family before me. • Address roadblocks to “Taking Care of the Caregiver.” • Conceptual Translation. • Community Advisory Board/Partners. • Caregiver and service provider feedback.