Quality of life in residential care: a qualitative study of perspectives of people with dementia, their family members and healthcare staff.

Abstract

As our population ages so too will the number of people with dementia increase. For some time there have been concerns expressed by campaigners for people with dementia about quality of life and the safety and quality of care delivered for those in rest homes, particularly for residents in the specialised dementia rest homes. Little is known about the quality of life of people with dementia from their own subjective points of view, in particular in reference to the corresponding opinions of family members and healthcare workers. The aim of this study was to look at views of quality of life for residents living in a specialist dementia level rest home, and how they were expressed. The study gathered data from four “cases” covering three viewpoints in each case: the resident with a moderate dementia, a key family member and a key residential healthcare worker involved in their care. The study used a qualitative method, analysing data from these twelve recorded and transcribed interviews. The interviews were semi-structured following the line of questioning of the Quality Of Life–Alzheimer’s Disease (QOL-AD) assessment (Thorgrimsen, Selwood & Spector, 2003) (Appendix 1) followed by some more open-ended questions. Data were analysed and interpreted according to key themes and phrases and explored for similarities and differences using descriptive methodology. The main findings of this study are that quality of life has many dimensions and has differing meanings to each participant. The person with dementia’s subjective viewpoint is important in rating their own quality of life, however, using the “three voices” (resident, family and healthcare worker) made an authentic contribution, enabling a more comprehensive understanding of quality of life for the residents living with dementia. Despite being given a diagnosis of dementia, resident participants demonstrated awareness and an acceptance of their condition. Each resident participant described a better quality of life for themselves than that reflected in the opinions of the family members and healthcare workers. Another significant finding was that family relationships were seen to be important to the resident’s quality of life, not only as part of physical closeness but also as emotional attachment. These findings may lessen the degree of guilt and distress for family members in such situations. Studies of this type may also assist healthcare workers develop their ability to intervene to improve the quality of life of individuals with dementia rather than simply dealing with more medical or basic care aspects of the condition.