What is intended by the term "participation" and what does it mean to people living with dementia? A conceptual overview and directions for future research.
Sarah Kate Smith, Emma Louise Wolverson, Gail Anne Mountain
PMID 36189033WHAT IT FOUND
There is no agreed definition of "participation" for people with dementia, and current tests measure daily tasks or memory, not social involvement.
Clinicians should not assume standard assessments capture a patient's desire to stay connected or their lived experience of social life.
Key findings
01The concept of participation is subjective and ill-defined, with no widely accepted tools to measure it in dementia research.
02Existing outcome measures focus on cognitive decline, daily living activities, and mood, failing to capture the positive social experiences patients value.
03Standard assessments rely on recalling past weeks or months, which is inaccurate for patients whose experience fluctuates and who live in the "here and now".
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
This is a narrative review, not a systematic search, so it may not capture all relevant literature. The paper discusses concepts and measurement challenges but does not propose or validate a new clinical tool. Findings are based on the authors' interpretation of existing studies and policy documents rather than direct patient data collected for this paper.
Declared interests
No conflicts of interest or funding sources are declared in the provided text.
The easy way to misread this
Do not interpret this paper as evidence that current participation measures are valid for people with dementia. It argues the opposite: that we lack appropriate tools. Do not use standard ADL or cognitive scores as a proxy for a patient's social well-being or sense of belonging, as the review states these concepts are distinct and poorly captured by existing instruments.