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How do families discuss and make decisions about caring for older family members?
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What kinds of professional services do caregivers use and find most helpful in caring for their relatives?
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What impact does caregiving have on family relationships?
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How do caregiving families change as time goes by?
To explore these questions, and as part of our commitment to identify and meet the needs of family caregivers, Family Caregiver Alliance conducted a study in collaboration with The Margaret Blenkner Research Institute (MBRI) in Cleveland, Ohio.
Over the past four years, a total of 111 family caregiving dyads were interviewed. These dyads consisted of an adult with chronic memory or physical problems (care recipient), and the family member or friend who helped the care recipient the most (caregiver). Each family was interviewed yearly over the course of three years.
Most of the caregivers interviewed were female (81%) and were the wife (33%) or daughter (33%) of the person they were caring for. The remaining caregivers were husbands, sons, sisters, nieces, nephews, cousins or friends. Caregivers ranged in age from 30 to 91 years old. On average, caregivers provided 72 hours of care per week.
The relatives receiving care ranged in age from 39 to 94 years old, and slightly more than half were female (54%). Those receiving care were most likely the caregivers’ mothers (39% ) or husbands (34%). Most suffered from memory problems due to Alzheimer’s disease or dementia (78%).
What Is Important to Families as They Make Care Decisions?
Caregivers and those receiving care were asked how much they discussed their wishes for daily care. About one-third of caregivers and care receivers said they talked about their wishes a lot, while an equal number said they had never talked about their wishes.
In general, caregivers and those receiving care agreed on the most important values and preferences for daily care. The values and preferences they considered most important included:
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Having a comfortable place to live
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Having the caregiver be the main one who provides help; and
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Continuing to stay in their own homes.
Occasionally, however, the caregiver and those receiving care disagreed on what values and preferences were most important. For example, compared to caregivers, care recipients felt it was more important to “have something to do” and that the caregiver “not put their life on hold” to provide care.
What Professional Services Are Families Using?
Caregiving families reported using an average of five professional services. The most frequently used services
helped with:
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providing information about the care recipient’s illness
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arranging services or benefits
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housework or shopping
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grooming and personal care
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emotional support for caregivers
When asked what additional information would be most helpful, caregivers frequently stated they would like to know more about the kinds of services that are available to them in the community.
Caregiving and Family Relationships
Interviews with caregivers reflected both the positive and negative aspects of caring for a relative with memory problems. Feelings of physical and mental exhaustion, frustration, and isolation were a few of the difficulties many caregivers mentioned.
The majority of caregivers (82%) however, reported that caregiving had taught them many important and positive things about themselves and their loved ones.
The study was funded by the Robert Wood Johnson Foundation, The AARP Andrus Foundation, and The Retirement Research Foundation.
For more information, contact Lynn Friss Feinberg at Family Caregiver Alliance, (800) 445-8106.
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