Purpose: The project aimed to develop a prototype for the recruitment and consent of persons with early-stage dementia and their families, and to identify the decision-making and psychoeducational needs of these families. Preliminary results from the persons with early-stage dementia are presented here. Method: Partnerships were developed with a representative agency from mainstream specialty organizations, community agencies serving diverse populations, and clinical agencies for recruitment. Three informant focus groups (five dyads per group) of persons with early-stage dementia and their family caregivers, including one group of Hispanic background, were recruited to identify issues and long-range planning decisions faced by this population. Focus groups were structured beginning with parallel sessions for caregivers and persons with early-stage dementia, followed by a joint session for both sets of participants. Following the focus groups all participants were interviewed individually to gain their perceptions on the recruitment process and their focus group experience. Results: Preliminary content analysis of focus group and individual interviews with persons with early-stage dementia (average MMSE score of 25) yielded several themes. The caregiver is clearly the gatekeeper for the person with early-stage dementia. Persons with early-stage dementia talked about relinquishing control to their family members, expressed they had been reluctant to participate but acquiesced to their family members, in retrospect were pleased to be part of the study, and appreciated meeting separately with other persons with dementia. Though participant selection was fairly restrictive (based on MMSE performance), the experiences and perspectives of these individuals appear quite variable. This underscores the importance of tailoring interventions to individuals and families. Grant funding from NINR P20.

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See more of The 17th International Nursing Research Congress Focusing on Evidence-Based Practice (19-22 July 2006)