A qualitative description of family caregiver’s perceptions of dementia education and support

Abstract

There is an increase number of adults living with symptoms of cognitive impairment such as Alzheimer’s Disease, Lewy Body and Frontotemporal lobe dementia. The vast burden of care for those living with any type of dementia often falls to family caregivers who may have little to no training for this care. The purpose of the project was to explore the methods that have best helped family caregivers of a person living with dementia gain knowledge and support by using a qualitative descriptive inquiry study. The participants were five women who were caring for a person living with dementia in rural eastern North Carolina. The participants were approached and interviewed at a Geriatric Workforce Enhancement Program grant-provided community-based event that taught caregiving strategies. Common themes derived from the interviews were: hands on learning, frustration and patience, education leads to sharing knowledge, understanding the person before dementia. Caregivers liked trying out new techniques, seeing videos of actual patients and talking about what works for their person. While there is not an absolute solution for frustrations, the participants would say other caregivers should prepared to expect that frustration will occur. The fourth theme whereby participants recommended learning more about the person before dementia was a bit surprising because it was not a topic in the educational event that they were attending that day. The participants also felt like it was their responsibility to teach others about dementia. It is important to consider alternative education methods to deliver dementia caregiving content beyond the lecture. The concept of learning about the person before they got dementia is intriguing and bears further exploration.