The movement towards earlier diagnosis of dementia provides, in theory, the opportunity for the impaired person to play an active role in decision making and planning for the future. However, little is known about the experience of the person with dementia as the care-recipient has been virtually ignored in dementia research. It seems likely that the perspectives and concerns of persons living with dementia differ substantially from those of their family caregivers. Thus, the purpose of this study was to examine the perceptions of persons in the earliest stage of a dementing disorder.
We conducted semi-structured interviews with care-recipients who took part in a NINR-funded intervention study for dementia caregivers. Participants responded to open-ended questions about their experiences since they began having memory problems. Qualitative methods were used to identify themes from the responses of 30 care-recipients who had a diagnosis of progressive dementia and an MMSE score of 25 or above.
Care-recipients were mostly male (67%), ranging in age from 54 to 91 with a mean of 77.8 years. The majority of the care-recipients were married (60%), with their spouse being the primary caregiver.
Findings to date suggest a nearly unanimous recognition of short-term memory loss, particularly in the areas of forgetting names and misplacing objects. Care-recipients spoke of feelings of loss and dissatisfaction with the way things were going, but the majority attributed the cause of their dissatisfaction to aging as opposed to a progressive disease process. Many respondents expressed appreciation for the effort and support provided by the primary caregiver and acknowledged that their memory problems had affected their relationships with others. In order to tailor interventions to the needs of this rapidly expanding population, nurses must acquire a better understanding of the early-stage dementia experience from the perspective of the care-recipient.
Session #1219 - Poster Session I
The 29th Annual MNRS Research Conference (April 1-4, 2005)