Caregiving

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 caregivers 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).

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Race and Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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 Caregiving1980 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).

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Race and Caregiving1980 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).

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Race and Caregiving1980 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 Caregiving1980 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
  OAs illness.

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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.

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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.