Page 15 - Delaware Medical Journal - September/October 2018
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PUBLIC HEALTH
FAMILY CAREGIVERS
A sociologist has said that caregivers are heterogeneous in their relation to the recipient, in the initiation of the relationship, in tasks performed, in duration of the relationship, in the form of caregiving, and in their association with persons outside of the caregiver/ recipient interaction.6 This complexity and heterogeneity make research impact on patients’ clinical outcomes hard to evaluate.
It is also difficult to be sure exactly how many family caregivers there
are providing these valuable services, but the Family Caregiver Alliance, National Alliance for Caregiving and AARP suggest there are more than 43 million currently in the United States. Of these, about 34 million care for
a recipient 50 years of age or older. Eighty-five percent of caregivers provide care for one adult. About 40 million caregivers are working with adults with disabilities. About 16 million of these recipients are persons with Alzheimer’s or other dementias.
About 65% of care recipients are female, as are about 60% of caregivers. While men make up only 40%, there appear to be higher percentages of male caregivers African-Americans. The average age
of a caregiver is about 50. The average recipient is about 70 years old and 50% of recipients are 75 or older. The average duration of a caregiving relationship
is about four years. Time spent on caregiving activities may vary from
a few hours a week to 30 or more; a suggested average is about 24 hours per week. By some estimates, up to 20% of caregivers reside with the recipient.3,4,5,7 As many as 25% of the caregivers who provide care for over 20 hours per week are 65 or older themselves.
of defense in informal care. Half of caregivers are offspring of the recipient, while about 20% are spouses or other relatives. Friends (though that relationship is often not clearly described) and neighbors supply about 20% of caregivers.
Caregivers appear to be ethnically and racially diverse. In one study, 60% of caregivers were white, 15% African- American, 15% Hispanic and 5% Asian-American.4 Minorities may be underestimated in this study based on differences in ascertainment. In one themselves and the recipient as LGBT.4
There are concerns that, as more
women enter the workplace, there may be an increasing shortage of informal caregivers.8 It is argued that previously (and traditionally), it was expected that generations within families would care for one another, but this custom is less prevalent today.8 Perhaps more elderly today have complicated medical and social situations as well.2,3 As of this writing, according to the Alzheimer’s Association, there are an estimated 5.7 million Americans with Alzheimer’s
and related dementias and that number
is expected to at least double as our population ages over the next 30 years.
It will be a great challenge to our formal and informal care systems to meet the needs of all of those cognitively impaired patients.
TASKS
There are a variety of tasks assumed by family caregivers. Most commonly, these are household activities (e.g., shopping, cleaning, etc.) but also frequently assistance with personal care (e.g., bathing, shaving, etc.). In some caregiving relationships, family caregivers eventually take on what look like simple nursing
care activities. Providing transportation
is another common task. Some caregivers have described offering friendly social activities and just being a companion: “being there” or “keeping an eye out.” The hours spent on tasks vary. The Family Caregiver Alliance reports that typically 12 (equivalent) days a month are devoted to housekeeping and shopping, six days to dressing and grooming, and 13 hours a month to interacting with formal providers around the recipients’ needs. These activities may be informational and/or advocacy and include assistance in arranging medical visits.2,4,8
A model of the evolution of the caregiving process might include the recognition of
a person needing assistance, a decision
by a family member or friend that she can offer the assistance, and then the initiation of the relationship.2 Numerous internal family issues (e.g., economic status, available hours, health of others) and aspects of the recipient’s status (e.g., age, gender, type, and severity of disability), as well as external factors (e.g., location, available hours, available support
BENEFITS AND PROBLEMS
Receiving needed assistance from a family member or friend seems to be an And the family caregiver generally seems to be dedicated to the well-being of the recipient.
suggest that being a caregiver can be experienced as rewarding. The caregiver often feels a sense of reciprocity; “giving back” care to an older relative who once provided for the caregiver’s survival and support can be gratifying. Caregiving
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