Measuring the well-being of people with dementia: a conceptual scoping review

Abstract

Background: Enabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Promoting Independence in Dementia (PRIDE): A Feasibility Randomized Controlled Trial

“…Taking into account the performance of the measures, a future trial could substitute the DemQol and the CASP19 for related shorter instruments such as the CASP-12 and other relevant measures arising from recent reviews on outcome measures for studies of this type. 27 , 28 …”

“…Taking into account the performance of the measures, a future trial could substitute the DemQol and the CASP19 for related shorter instruments such as the CASP-12 and other relevant measures arising from recent reviews on outcome measures for studies of this type. 27,28 Given that people with dementia think that "in the moment" measurement is perhaps more reflective of their response to psychosocial interventions, 29 there is scope to incorporate emerging digital Experience Sampling Methods (ESM) 30 in a future definitive RCT of the PRIDE intervention.…”

Participation of persons with dementia and their caregivers in research

“…Traditional measures used to capture the experiences of PLWD and their care partners largely focus on the extent or alleviation of deficits. Commonly used measures frequently overlook domains relevant to the care and caregiving, such as existing strengths and abilities, and positive psychosocial and emotional dimensions of life and social connectedness 32 . Exclusive reliance on deficit‐oriented measures unnecessarily circumscribes areas of investigation and interventional targets for care and caregiving to aspects of the disease process associated with loss and impairment, and in doing so constrains attention to the intrinsic personhood of PLWD.…”

Cognitive Tele-Enhancement in Healthy Older Adults and Subjects With Subjective Memory Complaints: A Review

“…Healthy cognitive functioning is a primary condition of well-being, independence, and successful aging (4)(5)(6). In recent years, promoting active and healthy aging has become an important challenge to ensure good physical, social, and cognitive functioning.…”