Use of adapted or modified methods with people with dementia in research: A scoping review
Bibliographic 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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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.006 | 0.001 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.004 | 0.000 |
| Bibliometrics | 0.002 | 0.005 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".