IDENTITY AND CAREGIVER BURDEN IN DEMENTIA: AN EVALUATION OF TELEHEALTH REMINISCENCE FOR INFORMAL CAREGIVERS

Abstract

In the literature, informal caregivers’ perception of identity change/loss in their care-partner with dementia is anecdotally linked to loss of intimacy, while decreased intimacy and quality of the caregiver/partner relationship is associated with greater caregiver burden. A connection between perceived identity and burden is further implied by the potential benefit of reminiscence therapy for caregivers, and literature on reminiscence. Despite demonstrated benefit for persons with dementia, support for reminiscence with caregivers has been equivocal, though it is unclear as to why. The dissertation’s main objectives were therefore to 1) quantitatively examine support for a theoretical model of perceived identity change, intimacy/quality of relationship, and caregiver burden; and 2) using this model as a theoretical guide, evaluate efficacy of a basic reminiscence activity. Rural dwelling caregivers are at particular risk for negative outcomes due to limited service access, and interventions unrestricted by geographic location are needed. Thus, the reminiscence activity was delivered via both in-person and Telehealth videoconferencing formats, and a third project objective was to examine Telehealth feasibility for both service delivery and research purposes. Study 1 revealed caregivers’ perceived identity change in their care-partner with dementia significantly predicted caregiver burden. A mediational model was supported in which caregivers’ perception of identity change of the person with dementia reduced perceived quality of their relationship, which in turn increases caregiver burden. Study 2 involved random assignment of caregivers to respective in-person or Telehealth, control, or Reminiscence groups. Contrary to predictions based on Study 1’s model, no effect of the Reminiscence activity on identity change, intimacy, quality of relationship, or burden was observed despite most caregivers reporting a positive experience. Study 3 demonstrated good feasibility for Telehealth delivery, including considerable travel savings and satisfaction with the medium. No differences in acceptability in-person delivery were found. Identifying and understanding factors affecting caregiver burden is crucial towards development of effective intervention. Perceived identity change appears to be one possible factor in multifactorial prediction of caregiver burden, but reminiscence demonstrated no effect on burden. Telehealth proved to be a practical and acceptable format for rural service delivery and data collection. Limitations and implications of the project results are discussed.