Family composition and expressions of family-focused care needs at an academic memory disorders clinic.

Objective. To understand who dementia patients identify as their family and how dementia affects family life. Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life. Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual's needs or the family's needs. Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response. Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

Does the "marriage benefit" extend to same-sex union?: Evidence from a sample of married lesbian couples in Massachusetts.

This study investigated the relationship between wellbeing and marital quality in a married lesbian sample from Massachusetts. Two hundred twenty five (225) participants responded to this mailed survey study. Participants completed a demographic questionnaire, the Dyadic Adjustment Scale (DAS), and the World Health Organization Quality of Life-Brief Instrument (WHOQOL-Bref). DAS scores were a strong predictor of reported wellbeing in all quality of life domains including physical, psychological, and financial wellbeing. Results support the finding in the heterosexual marriage literature that healthy marriage is associated with distinct wellbeing benefits for lesbian couples. Implications of these findings are discussed.

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.