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  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.