Family quality of life in dementia: a qualitative approach to family-identified care priorities

Objective: To characterize factors contributing to quality of life (QOL) in families providing care to people with dementia.

Background: Assessing QOL in dementia has proved difficult. Individuals with dementia often possess limited insight, leading them to self-rate QOL differently from those who provide care for them. A majority of people with dementia receive care in the context of family units, but measures of whole-family QOL have not been previously described in the literature on dementia. The concept of family quality of life (FQOL) was developed and validated among families caring for children with developmental disabilities. FQOL measures have the potential to improve determinations of effectiveness in dementia care.

Design/Methods: Fifty-four questionnaires requesting information on priorities for care were collected from families of patients obtaining care at an academic dementia clinic. Forms were completed by family members, patients, or both. The mean age of the patients was 73.6 years; 61% were women. Qualitative analyses of the responses were conducted by two evaluators. Comments from 54 questionnaires were assigned by consensus to five categories based on domains validated for FQOL in families of individuals with developmental disabilities. Eleven cases from the 54 were rated by both evaluators to assess inter-rater reliability.

Results: Five domains were identified as follows: (1) family interactions, (2) direct care/activities of daily living support, (3) emotional/behavioral well-being, (4) physical and cognitive well-being, and (5) disability-related support/medical care. Not surprisingly for clinic encounters, medical care requests and inquiries were expressed by a high proportion of families. Concerns about physical and cognitive well-being were expressed nearly as often. Issues regarding family interactions and emotional well-being were less frequently raised.

Conclusions/Relevance: A FQOL model developed for developmental disability provided useful information for qualitative characterization of priorities among families receiving dementia care. Ongoing research will be useful to explore the validity and utility of the FQOL concept in dementia, especially in domains not well addressed by the current questionnaire.