Abstract
The purpose of this presentation is to describe the results of an ethnographic study in two assisted living (AL) communities regarding the family members’ role of facilitating health care for residents with dementia. AL communities were originally designed as a housing model; but it is now estimated that over 50% of the residents in AL have some form of dementia and may require more services. Registered nurses are not required to be employed in AL communities in California, thus health care is coordinated by unlicensed personnel and family members. The setting for this ethnographic study was two dementia-only AL communities in California. Participant observation was conducted over six months focusing on the interactions between residents, families, and employees. Open-ended interviews were conducted with twelve employees and nine family members. The data were analyzed for themes regarding how family members and employees communicated regarding the health care of the residents with dementia. Two qualitative themes: “Acknowledging Barriers” and “Assertive Advocacy” emerged from the qualitative data regarding how family members perceived the exchange of health care information regarding their loved ones with dementia. Family members and employees described the barriers regarding communication but acknowledged that family members who assertively advocated for their loved ones can overcome the barriers. The frustrations expressed by family members may lead to disruption in the continuity of care. Healthcare providers and gerontologists can provide education to families of older adults about how to advocate for smooth coordination of health care.