1. Caregiving Lecture 12/1/04

2. Caregiving Statistics About 64% of older persons living in the community and in need of long-term care depend on informal caregivers (family and friends). Caring for a person with dementia has a negative impact on the caregiver’s psychological and physical health, social life and career, and relationships with the care recipient.

3. Spousal Caregivers More likely to be women than men. Likely to have played traditional gender roles and to report taking over tasks previously carried out by their ill spouse. Female spousal caregivers report that they curtail their other activities such as spending time with friends and family members more than male spousal caregivers (42.6% vs. 21%). Female spousal caregivers are more likely to report receiving no help at all and to report dissatisfaction with received assistance.

4. Family Assistance Provided to Spousal Caregivers Assistance provided to spousal caregivers by adult children depends on whether the mother or father is the spousal caregiver, with more assistance provided to fathers caring for ill mothers. More male spousal caregivers receive help from siblings than do female spousal caregivers.

5. Paid Assistance Provided to Spousal Caregivers No gender difference in use of formal support:  Male spousal caregivers report the CR receives enough support from family and friends  Female spousal caregivers report the CR does not need additional help Male spousal caregivers are more likely than female spousal caregivers to pay others to cook or perform housekeeping tasks.

6. Caregiving Gender and Mental Health In comparison with male spousal caregivers, female spousal caregivers report:  Greater dissatisfaction with received social support  More feelings of isolation  Lack of sleep and privacy  More feelings of embarrassment and rejection by their ill spouse

7. Adult Child Caregivers Due to the developmental stage / social roles of adult children, caregiving can have a greater impact on their lifestyle than on that of spousal caregivers.  More likely to be employed  More likely to be caring for children Adult-child caregivers are more likely than spousal caregivers to report role captivity in caregiving. Adult-child caregivers may also be long-distance caregivers.

8. Statistics RE Aging and Ethnicity US Census Data 2000 reports that the US elderly population increased from 5% in 1930 to 13% in 1990, with projected increase to 20% of the total US population by 2050. The percentage of racial and ethnic minority elders will increase at a much higher rate than that of non- Hispanic white elders over the next 50 years. The prevalence of severe functional impairments among minority elderly is higher than among their white counterparts (SES, access, life-context issues).

9. Race and Caregiving: 1980 through 2000 Not limited to dementia, though dementia predominates caregiving research. Parameters of inclusion (N = 59 studies):  Published in refereed professional journals  Focus on informal caregiving of dependent elderly people with race, ethnicity or culture as a primary focus Parameters of exclusion:  Race used only as a control variable  Caregiving of institutionalized elderly  Only care recipient views were reported Most data available for white and AA caregivers.

10. Race and Caregiving: 1980 through 2000 Part II Four domains of research with at least 10 published articles regarding the topic:  Social support ~ study n = 32  Negative effects of caregiving ~ study n = 29  Coping with caregiving stress ~ study n = 13  Cultural effects on caregiving ~ study n = 20

11. Race and Caregiving: 1980 through 2000 Part III Social support ~ study n = 32:  14 theoretical; 18 atheoretical studies Stress and coping models predominate  11 comparisons of AA and white  Ethnic minority elders have more diverse informal support networks  Ethnic minority elders use informal support networks similarly in comparison with whites  Ethnic minority elders use formal services less than nonminority caregivers

12. Race and Caregiving: 1980 through 2000 Part IV Negative effects of caregiving ~ study n = 29:  In the rare cases where theory-driven research was conducted, stress process models predominate  Regarding depression, 6 studies report no difference between AA and white caregivers (mostly small samples); 4 studies report that white caregivers are significantly more depressed than AA.

13. Race and Caregiving: 1980 through 2000 Part IV (cont)  More on race and caregiver depression: In one study, the relationships among depression, positive reappraisal, and heart rate reactivity were found to operate differently for AA and white caregivers ( Knight & McCallum, 1998 )  Positive reappraisal may increase stress among whites while decreasing stress among AAs. The relationship between race and depression may be mediated by stress and coping appraisals (Haley et al 1996)

14. Race and Caregiving: 1980 through 2000 Part IV (cont)  Race and caregiver burden: Five studies found white caregivers reported significantly higher burden than AAs; 4 studies found no difference Lack of consideration of the relationship of culture and caregiver burden (personal and family hx, sociopolitical factors)

15. Race and Caregiving: 1980 through 2000 Part IV (cont)  Race and caregiver role strain (4 studies): Hispanic caregivers reported higher role strain and personal strain than AA caregivers (Cox & Monk, 1996). Best predictors of role strain include being white, having greater behavioral bother and task distress, and higher CR (spouse) ADL need (Farran et al 1997 +). Lower levels of provisional and ultimate meaning for white vs AA caregivers; provisional meaning decreases depression and role strain (Farran et al 1997). As caregiving mastery decreases, role strain increases (Miller et al., 1995). Role conflict, respite, and care relationship effects differ between white and AA caregivers (Mui, 1992).

16. Race and Caregiving: 1980 through 2000 Part IV (cont)  Race and caregiver relationship strain (1 study): No differences between white and AA caregivers, but levels are high (Cox, 1993).

17. Race and Caregiving: 1980 through 2000 Part IV (cont)  Race and caregiver psychological distress (3 studies): Distressed AA caregivers reported being less satisfied with SS, greater role strain, poorer health, and less mastery (Dilworth-Anderson et al., 1999). AA caregivers report lower distress and appraised caregiving more favorably than whites (Farran et al., 1997).

18. Race and Caregiving: 1980 through 2000 Part V Coping with caregiving stress ~ study n = 13:  Primarily theoretical with predominance of the stress and coping model.  AA caregivers using more emotion-focused coping (including Escape-Avoidance) than whites. Whites use more approach coping (Knight et al., 2000; Haley et al, 1996).  Quality of SS may predict confrontive coping, appraisals of perceived rewards may predict palliative coping, and appraisals of perceived costs may predict emotive coping (Picot, 1995).  Urban AA caregivers use more behavioral and cognitive coping than rural AA or white caregivers (Wood & Parham, 1990).

19. Race and Caregiving: 1980 through 2000 Part V (cont) Coping with caregiving stress ~ study n = 13:  AA caregivers cope with difficulties of caregiving with prayer, faith in God, and religion.

20. Race and Caregiving: 1980 through 2000 Part VI Cultural effects on caregiving ~ study n = 20:  Little attention given to defining culture from a sociohistorical perspective.  Most researchers found cultural groups have values about reciprocity, filial obligation, and a sense of responsibility for caring for older family members.  Cultural perceptions about illness and disease shape the meanings groups assign to a dependent OA’s illness.

21. Race and Caregiving Research Needs Need to measure culture directly and not rely on race as a proxy measure. Need more studies on additional ethnic minorities and to break “whites” down into ethnic groups. Need to make stress process models more culturally relevant.

22. General Caregiving Research Needs Need to incorporate noncaregiving comparison groups. Need to use similar measures in probability samples and make multivariate not bivariate comparisons. Need for mixed method studies. Need to investigate positive caregiving outcomes. Need to investigate gender.