Research
Print page Print page
Switch language
The Capital Region of Denmark - a part of Copenhagen University Hospital
Published

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

Research output: Contribution to journalReviewResearchpeer-review

  1. Evaluation of the Oxford Hip Score: Does it still have content validity? Interviews of total hip arthroplasty patients

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. Investigating the response scale of the EORTC QLQ-C30 in German cancer patients and a population survey

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. Electronic reporting of patient-reported outcomes in a fragile and comorbid population during cancer therapy - a feasibility study

    Research output: Contribution to journalJournal articleResearchpeer-review

  4. Health-related qualify of life, angina type and coronary artery disease in patients with stable chest pain

    Research output: Contribution to journalJournal articleResearchpeer-review

  • Chris Clarke
  • Bob Woods
  • Esme Moniz-Cook
  • Gail Mountain
  • Laila Øksnebjerg
  • Rabih Chattat
  • Ana Diaz
  • Dianne Gove
  • Myrra Vernooij-Dassen
  • Emma Wolverson
View graph of relations

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.

Original languageEnglish
Article number249
JournalHealth and Quality of Life Outcomes
Volume18
Issue number1
Pages (from-to)249
ISSN1477-7525
DOIs
Publication statusPublished - 24 Jul 2020

    Research areas

  • Data Collection, Dementia/psychology, Female, Humans, Male, Patient Reported Outcome Measures, Psychometrics/instrumentation, Quality of Life, Self Report, Outcome measurement, Positive psychology, Lived experience, Quality of life, Successful aging, Well-being, Dementia

ID: 61266190