Clinical Review
Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies

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The authors summarize the dementia caregiving literature and provide recommendations regarding practice guidelines for health professionals working with caregivers. Family caregiving of older persons with disability has become commonplace in the United States because of increases in life expectancy and the aging of the population, with resulting higher prevalence of chronic diseases and associated disabilities, increased constraints in healthcare reimbursement, and advances in medical technology. As a result, family members are increasingly being asked to perform complex tasks similar to those carried out by paid health or social service providers, often at great cost to their own well-being and great benefit to their relatives and society as a whole. The public health significance of caregiving has spawned an extensive literature in this area, much of it focused on dementia caregiving because of the unique and extreme challenges associated with caring for someone with cognitive impairment. This article summarizes the literature on dementia caregiving, identifies key issues and major findings regarding the definition and prevalence of caregiving, describes the psychiatric and physical health effects of caregiving, and reviews various intervention approaches to improving caregiver burden, depression, and quality of life. Authors review practice guidelines and recommendations for healthcare providers in light of the empirical literature on family caregiving.

Section snippets

Dementia Caregiving

Dementia caregiving is the most frequently studied type of caregiving represented in the literature.5 Most older adults with dementia receive assistance from their spouse, but when the spouse is no longer alive or is unavailable to provide assistance, adult children usually step in to help. Adult daughters and daughters-in-law are more likely than sons and sons-in-law to provide routine assistance with household chores and personal care over long periods of time, and they also spend more hours

Health Effects of Caregiving

Although family caregivers perform an important service for society and their relatives, they do so at considerable cost to their own well-being. There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity in the form of higher prevalence and incidence of depressive and anxiety disorders.8, 17, 18, 19 Most studies indicate that female caregivers report higher levels of depressive and

Intervention Research

The accumulating evidence on the personal, social, and health impacts of caregiving has generated intervention studies aimed at decreasing the burden and stress of caregiving. The dominant theoretical model guiding the design of caregiver interventions is the stress/health model illustrated in the left column of Figure 1. According to this model, the primary stressors being placed on the caregiver include the level of patient cognitive impairment, the frequency of patient problem behaviors

Existing Guidelines for Practitioners

Caregivers play a critical role in the diagnosis and treatment of patients with dementia. Because caregivers have around-the-clock access to patient behavior and the knowledgebase to identify significant changes in patient functioning, they serve as a critical source of information for the clinical assessment of the patient.48 Also, treatments and behavioral interventions for the patient are typically implemented by the caregiver, who has day-to-day contact with the patient. The centrality of

Future Directions

Caregiving presents difficult, sometimes intractable problems, and although we have learned a great deal about how to describe and characterize the challenges of caregiving, assess its impact on family members, and identify promising intervention approaches, much more needs to be done. For example, with the exception of a few recent studies, we know relatively little about transitions into and out of the caregiving role. Understanding pre- or early caregiving stages may enable us to develop

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    This work was supported by grants from the National Institute on Aging (K01 MH065547, R01 AG15321, U01-AG13313), National Institute of Mental Health (R01 MH46015, P30 MH52247),and National Institute for Nursing Research (R01 NR08272), and grant P50 HL65111-65112 (Pittsburgh Mind-Body Center) from the National Heart, Lung, and Blood Institute.

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