The experience of providing long-term care in the home for a relative with a dementing condition such as Alzheimer's Disease (AD) is not without its economic and emotional costs. Although much progress has been made on the behalf of family caregivers, very little attention has been paid to the experience of the person with dementia (PWD). Due to recent medical advances, PWDs are being diagnosed earlier in the disease process. As a result, they are taking advantage of opportunities to extend their autonomy by becoming more involved early on in the decision- making process related to their care needs and preferences. Caregiving research, however, lags behind in its efforts to incorporate the perspective of the PWD into theories of caregiving and related stress. The proposed study addresses this deficiency by expanding current theoretical models of caregiving to include the experiences of both PWDs and caregivers. Specifically, this study will accomplish the following: 1) Expand the Stress Process Model of Family Caregiving 3,43 by incorporating the experiences and preferences of PWDs around decision- making and service uses as potential stressors for family caregivers. 2) Use longitudinal PWD and caregiver data collected and managed by the Alzheimer's Disease Research Center's (ADRC's) Clinical, Caregiving, and Data Management and Analysis Cores, as well as additional data collected through in-person interviews, to determine: a) the preferences of PWDs for the care they are currently and the caregiver's perception of these preferences, c) the effect of level and type of congruence caregiver stress and well-being, and the dyad's formal service use. 3) Enhance the roles of both PWDs and their family caregivers by collaborating with the ADRC Education and Information Transfer Core (EITC) to develop and disseminate throughout the state of Ohio and the U.S. a variety of educational materials that guide PWDs, families, and practitioners in using key techniques for making informed and mutationally beneficial decisions about home and community-based care and information Transfer Core to develop and disseminate educational brochures to provide guidance to PWDs, families, and practitioners in identifying key techniques for making informed and mutationally beneficial decisions about home and community-based care.
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