The purpose of this research is to increase understanding of how families in rural Appalachia manage care for older relatives with Alzheimer?s disease or other dementias. These families may be especially challenged because of regional characteristics such as low population density in isolated communities; low income, education, and employment; poor housing; lack of health insurance and reliable transportation; and limited health care facilities, specialized health care providers, and community support services. Understanding their unique situation will make it easier to plan supports and services to help caregiving families. Specifically, the aim of this project is to learn from families in Appalachia about their approaches to caregiving across stages of Alzheimer?s disease and uncover whether they need and use community services currently as well as their views of formal service use in the future. The research is based on a guiding model of caregiving stress and influences on service use. This model incorporates multiple pieces of information about both individual and community factors that affect care needs and service use. The research employs multiple strategies to gather information. Community members will help the researchers with refining the participant the data collection tools and also with interpreting study findings in light of cultural values in rural Appalachia. Participants are 120 family caregivers who respond to a telephone survey followed by brief calls about daily events for 7 days. A subset of 25 caregivers will be invited to have a longer conversation about their caregiving situation and needs so the research team can gain deeper insights about the meaning of the survey results. This combination of asking specific questions in a large group followed by deeper probing using open-ended questions with a smaller subset of them is very effective for learning as much as possible about participants? experiences. Statistical methods are used to identify groups and trends in the survey and daily events data, and the longer interviews are summarized by grouping similar answers and identifying all the different perspectives in the interviews. The findings from this project will reveal diverse approaches to family caregiving for persons with Alzheimer?s disease. This information is important because their approaches and needs may differ from those used by families in urban areas. It is also important because with this knowledge, professionals can develop programs and services that families in Appalachia need, want, and find helpful. Having those programs and services will help families provide the best possible care for their relatives.
This research seeks better understanding of the challenges families in rural Appalachia face when caring for older adults with Alzheimer?s disease and other forms of dementia and how they manage those challenges. It helps identify needs and preferences for community services that could be helpful. When families receive services that they need and value, they can continue providing care effectively for as long as possible.
