ArticleDementia (London, England)2023
Use of adapted or modified methods with people with dementia in research: A scoping review.
Article in Dementia (London, England), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- What is the evidence for physical interventions for people living with advanced dementia in the community? A meta-review.BMJ supportive & palliative care · 2026Pooled it
- Involving People With Dementia in Research: Contributions, Barriers and Evaluation From a Meta-Synthesis and Qualitative Interview Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Building a Dementia-Ready Workforce in Malaysia: Family Caregivers' Insights.Dementia (London, England) · 2026Article
- Unclear boundaries: Family caregivers' invisible role in home-based palliative care in Norway: an exploratory analysis of secondary data from two previous studies.International journal of nursing studies advances · 2026Article
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Self-reporting quality of life in mild-to-moderate Alzheimer's disease and Lewy body dementia: Comparing capability and health-focused measures using response process validation.Social science & medicine (1982) · 2026Article
- Management of Co-existing Dementia and Hearing Loss in Social Care Settings: A Focus Group Study.Dementia (London, England) · 2026Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Navigating toward acceptance of death: Home-dwelling patients in the palliative phase.BMC palliative care · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
People with dementia are excluded from research due to methodological challenges, stigma, and discrimination. Including perspectives of people with dementia across a spectrum of abilities is essential to understanding their perspectives and experiences. Engaging people living with dementia in qualitative research can require adaptation of methods.Qualitative research is typically considered when researchers seek to understand the perspectives, lived experiences, or opinions of individuals' social reality. This scoping review explores current use of adapted methods with people with dementia in qualitative research, including methods used and impacts on the engagement as it relates to meeting accessibility needs. This review considered rationales for adaptations provided by authors, particularly whether authors identified a human rights or justice rationale for adapting methods to promote accessibility and engagement.This review began with a search of primary studies using qualitative research methods published in English in OECD countries from 2017 to 2022. Two reviewers screened titles and abstracts for inclusion. Full texts were reviewed, and data from included studies were extracted using a pre-determined chart. Content analysis of rationales was conducted and reviewed by all authors. Studies were assessed for findings related to impacts of adapted methods.Twenty-eight studies met inclusion criteria. Adaptations to qualitative research methods ranged from minor changes, such as maintaining a familiar interviewer, to more extensive novel methods such as photo-elicitation techniques. Twenty-seven studies provided a rationale for adapting their methods. No studies assessed impacts of their methodology on engagement or accessibility. Five studies observed that their methodology supported engagement.This review helps understand the breadth of adaptations that researchers have made to qualitative research methods to include people with dementia in research. Research is needed to explore adaptations and their impact on engagement of persons with dementia with a range of abilities and backgrounds.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.