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Characteristics of Caregiving

Caregiving defines yet another element within the dynamic, dimensional experience of aging and disability – whether late life onset or aging with a disability. Disability implies some deficit in function, and for many older people with disabilities, a spouse,adult daughter, or daughter-in-law becomes the caregiver. Caregiving intensity and duration varies substantially. A National Alliance on Caregiving (NAC) report estimates 19% of all adults over age 18 provide care to someone age 50 or older(2009). Two-thirds of caregivers are female – spouses, daughters, and daughters-inlaw.The NAC study divides caregivers into two broad groups – those 18–64 who care for a parent, parent-in-law, or grandparent, and those older caregivers who provide care to spouses, siblings, and non-relatives. In this study of care recipients aged 50 and over, 63% of care recipients were 75 year and older. Twenty-nine percent of caregivers provided care for 5 years or more, and 24% provided care 20 hours a week or more(NAC, 2009).

Health and health promotion become essential for both the caregiver and care recipient. The better the health of the caregiver, the more able they are to provide care. The better the health of the care recipient, the less intense care they need.A 2004 National Alliance on Caregiving-AARP report created a burden index suggesting five levels of care – Level 1 needed the least care, Level 5 needed the most.

Caregivers providing care to Level 5 care recipients were 3 times more likely to report fair or poor health than caregivers of Level 1 care recipients. Those caregivers with the poorest health, therefore, provided care to those with the greatest need.A considerable literature has evolved to identify stress, health effects, and increased mortality among caregivers (Schultz & Beach, 1999). Particular attention has been given to caregivers of people with dementia because of the unpredictable behavior associated with the condition. These demands upon caregivers have resulted in attention being shifted to the health and wellbeing of caregivers, especially women(McGuire, Anderson, Talley, & Crews, 2007). Talley and Crews (2007) asserted that caregiving is a public health problem requiring surveillance to identify the magnitude of the problem (Neugaard, Andresen, Talley, & Crews, 2007) and interventions to promote health among caregivers. In addition to considerations of caregiving for older adults with disability, the problem of aging caregivers also has been identified as an element of public health concern (DeFries (Bouldin) & Andresen, 2010).

People who have acquired disability early in life are likely to become caregivers or receive caregiving, or in some cases will be both providers and recipients. People with disabilities may care for their own children and/or their aging parents. In some cases, people with severe disabilities may receive parental care into middle age because of a lack of robust community support programs. In some states, Medicaid funded programs provide attendant care to people with severe disabilities so they can participate more fully in society. As is the case with many disability programs,“some” services are provided but not enough. So parents, relatives, and friends may provide supports when paid caregivers are not around. In states where 24/7attendantcare is provided, caregivers are often in the background making sure the fragile “system” of supports is sustained.

In the ICF framework, caregiving resides in the environment. As an environmental influence, both paid and family caregiving create a pathway for health promotion. Exercise, conditioning, nutrition, and social participation as well as mood can be improved through caregiving systems that are robust and responsive. (Please seeTalley & Crews, forthcoming, for more complete discussion of family caregiving and disability.)

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