Quality of life in dementia: do professional caregivers focus on the significant domains?

The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, "To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that people with dementia consider essential?" Study participants were nursing assistants who work in 24-hour nursing home care and professionals who offer daytime activities. Three hundred and seventy-four caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire. The caregivers reported to focus at least to some degree on most domains considered important by people with dementia. However, relatively little attention was paid to "financial situation" and "being useful/giving meaning to life." Professionals who offer daytime activities focused more than 24-hour care staff on "attachment," "enjoyment of activities," "sense of aesthetics," and "being useful/giving meaning to life."

Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale.

BACKGROUND: A literature study was conducted to contribute to an adequate use of quality of life (QoL) instruments for the evaluation of interventions in dementia care by providing an overview of properties of QoL measures that acknowledge domains important to dementia patients. METHODS: Domains important to patients, and domains that professional caregivers in different settings focus on, are compared to domains represented in nine QoL instruments. Data on psychometrics and applicability are generated. RESULTS: Four instruments best represent domains of QoL important to patients and domains professional caregivers in 24-h care and daytime activities focus on. Two are self-rating instruments: Schedule for the Evaluation of Individual Quality of Life, applicable in mild dementia, measuring individual QoL of patient and informal caregiver, and Quality of Life-Alzheimer's Disease Scale, which can be applied up to moderately severe dementia. For patients with advanced dementia receiving residential care, the observational instruments Qualidem and Discomfort scale-Dementia of Alzheimer Type are recommended. The first is easily administered by nurse assistants or occupational therapists and covers several QoL domains on which they focus in daily practice. The second can be used by various professionals. CONCLUSIONS: QoL assessment provides a format for patients and (in)formal caregivers to express whether an intervention has made an important difference to the patient's life. Improvement of QoL in dementia should have high priority in care, treatment and research. This study shows that severity of dementia, care type, setting, and the specific QoL domains an intervention focuses on, determine which QoL instrument is most appropriate in a specific situation.