Date of Conferral

2015

Degree

Ph.D.

School

Public Policy and Administration

Advisor

Linda Day

Abstract

Informal and formal caregivers of persons with Alzheimer's disease and related dementias (ADRD) encounter a more difficult and unique set of challenges than do caregivers of individuals with general disabilities. If adequate caregiver supports are not provided, caregivers may experience increased strain as the disease progresses, increasing the likelihood of unnecessary institutionalization of their care recipients and increasing the cost to the public. Using rational choice theory and political systems theory, the purpose of this study was to differentiate between the phenomenological experiences of formal and informal caregivers of ADRD patients. The overall research was a qualitative design that used semi-structured interviews to collect data from 5 formal and 5 informal caregivers who were recommended by the local Alzheimer's association chapter. Data were analyzed using direct content analysis of recurrent themes including how policymakers might respond to needs for respite, support, and more resources. Research findings suggested more education is needed about the disease and how best to give care for both formal and informal ADRD caregivers. Furthermore, distinctions between formal caregivers and informal family caregivers and their care recipients were identified, and these details should be noted by policymakers. Informal ADRD caregivers would benefit more from the research findings. Particular benefits would include financial supports, additional funding for caregiver respites, more education, and better care methods for ADRD care recipients. These recipients are rapidly growing in numbers and pose unique 21st century socioeconomic challenges to informal caregivers.

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