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The Critical Role of Caregivers Providing Care to Veterans with Dementia

Optimal care and outcomes for chronic medical illnesses often depend not only on the Veteran and medical provider but also on a caregiver who is responsible for much, if not most, of the Veteran's daily care. Both members of the Veteran/caregiver unit, called a dyad, have needs that must be addressed. Without a foundation of family caregivers to provide long-term care and support, the VA would not be able to meet the care needs of these Veterans. To underscore the critical role of informal caregivers for Veterans, the VA has enacted several clinical and research initiatives. The research initiatives call for interventions that aim to improve the health of the Veteran and caregiver who are struggling with psychological and physical ailments, such as Alzheimer's disease and other dementias.

Importance of Interventions for both the Veteran and Caregiver

The negative impacts of dementia can affect many facets of family life, including physical health, emotional health, social relationships, and legal and financial issues.1 Although not all caregivers experience these negative effects, most exhibit declines in their emotional and physical health, are unable to maintain work and family responsibilities, and experience social isolation. These 'role and intra-psychic strains' can be attributed to burdens associated with the Veteran's symptoms and care. Caregivers may not perceive a relationship between these consequences and the Veteran's symptoms and care, though negative impacts on general well-being may be evident. Examples of such negative outcomes are increased depression, deterioration in health status, increased health care service use, and increased risk for illness and death.

Caregivers are not well-positioned to provide optimal care for a Veteran if their well-being is impacted by a large number of these negative effects or by any number of them to a debilitating degree. In fact, high levels of caregiver burden have been associated with hospitalization and death among community-dwelling elders. Accessing the variety of services necessary to address the care needs of a Veteran with dementia as well as his or her own needs is particularly challenging, but important, for a family caregiver. Interventions targeting both members of the care dyad are the ideal approach to address well-being for both the Veteran and his or her caregiver. Dyadic interventions that address the negative effects of caregiving through greater access to support services are imperative to help caregivers have improved mental health, provide quality care to Veterans, and continue to provide care for Veterans in the community rather than in high-cost institutions and facilities.

Partners in Dementia Care Intervention

The Partners in Dementia Care (PDC), care-coordination intervention is an innovative, telephone-based coaching program originating from the Chronic Care Model.2 The goal of PDC is to address the unmet care needs of Veterans with dementia and their family caregivers across all dementia stages. PDC provides information and assistance to facilitate access to formal services, mobilizes family members and friends, and offers emotional support and coaching. PDC was implemented through formal partnerships between a dementia care coordinator at a VA medical center and a care consultant from a local Alzheimer's Association chapter.

A total of 508 Veterans age 60 and over with Alzheimer's disease and other dementias and 486 of their informal family caregivers participated in the PDC intervention. Preliminary analysis of data collected at enrollment for the intervention, and six and 12 months after enrollment, has focused on psychosocial well-being outcomes for both Veterans and their caregivers. Overall, Veterans and their caregivers have significantly improved across all domains measured: most important subjective stressor; factors affecting stress level; role and intra-psychic strain; and general well-being. Most of these benefits were observed after 6 months in PDC and maintained at the 12-month follow-up. Of note, after 6 months in PDC, Veterans exhibited a 25 percent reduction in scores on the measure of embarrassment about memory problems, and caregivers experienced a 15 percent decrease in depression symptoms. Furthermore, caregivers in the intervention group had an average of five fewer unmet dementia-related needs than caregivers in the comparison group after six months.

Meeting the needs of informal family caregivers providing care for Veterans with dementia represents an important challenge for the VA. For the coming years, the VA has prioritized the development of larger-scale feasibility studies and broader implementation of caregiver support services. Effective dyadic interventions that treat both the Veteran and his/her caregiver can overcome barriers to bridge the gap between caregivers and supportive services available to them. Preliminary findings suggest that PDC is effective at reducing unmet dementia-related needs and improving outcomes for caregivers and Veterans with Alzheimer's disease and other dementias. Access to and utilization of these services are essential to minimize the negative effects of caregiving, ensure well-being of both members of the dyad, and promote continued care at home.

  1. Bass, D.M, et al. "Negative Caregiving Effects Among Caregivers of Veterans with Dementia," American Journal of Geriatric Psychiatry (in press).
  2. Judge, K.S. et al. "Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers," Gerontologist 2011; 51(2): 261-72.

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