A Core Outcome Set to Evaluate Physical Activity Interventions for People Living With Dementia

Abstract

Background and Objectives A core outcome set (COS) to evaluate physical activity (PA) interventions for people living with dementia is needed, as the development of guidelines is currently limited by important heterogeneity in this field of research. Development of COS often includes Delphi surveys, but people living with dementia are often excluded. This study aimed to reach consensus on this COS using a modified Delphi survey to enable the participation of people living with dementia. Research Design and Methods Two stakeholders groups took part in a Delphi survey (Group 1: people living with dementia and family caregivers; Group 2: professionals from different backgrounds, including physiotherapists, occupational therapists, and researchers). Caregivers and professionals completed the survey remotely. Participants living with dementia took part face-to-face, using a card sorting strategy. The consensus process was finalized with a consensus meeting. Results Ninety-five participants of both groups completed the modified Delphi. Of those, 11 attended the consensus meeting. The card sorting strategy was successful at including people living with dementia. Seven outcomes reached consensus: preventing falls; doing what you can do; staying healthy and fit; walking better, being able to stand up and climb stairs; feeling brighter; enjoying the moment; and, feeling useful and having a purpose. Discussion and Implications Robust and innovative methodological strategies were used to reach a consensus on a COS (what to measure) to evaluate PA for people living with dementia. Future work will focus on the selection of the most appropriate tools to measure these outcomes (how to measure).

What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions

“…A key strength of this work is the involvement of people living with dementia in the research design process and as participants. The modified Delphi design reported in this study, to the best of our knowledge, is one of the first Delphi studies to be implemented successfully with people living with dementia in more than one round [ 27 ].…”

“…The reported representation of the views of people living with dementia in this study is both meaningful and substantial, and we argue without precedent in the reported literature. There has until recently been a relative lack of consultation with people living with dementia regarding the outcomes that matter most [ 18–21 , 27 ]. Some have excluded the involvement of people living with dementia when ascertaining salient outcomes or not adequately reported how people living with dementia have been meaningfully facilitated to be part of the research process.…”

“…Comparing our COS with a recent COS relating to physical activity programmes for people living with dementia shows some commonalities. There is some overlap with four of the seven outcomes: preventing falls; doing what you can do; enjoying the moment; and feeling useful and having a purpose [ 27 ]. There is also likely to be some overlap between many of the 13 core outcome items reported in this study and social health.…”

Feasibility and Effectiveness of a Biography-Based Physical Activity Intervention in Institutionalized People With Dementia: Quantitative and Qualitative Results From a Randomized Controlled Trial

“…These results are in line with (a) the systematic review of Zhang, Low, Gwynn, and Clemson (2019), indicating strong evidence that multicomponent training programs, focusing on strength and balance training combined with functional mobility training, improve gait in this target group, and (b) the meta-analyses of Zeng et al (2016), showing the positive effects of physical activity on balance in people with dementia. However, in 2019, a consortium of people with dementia, informal caregivers, and professionals defined a core outcome set to evaluate physical activity interventions (Gonçalves, Samuel, Ramsay, Demain, & Marques, 2020). One out of seven outcomes is walking better.…”

Dementia trials, outcomes, and outcome measurement instruments for people living with dementia and family carers – considerations on how to improve the “gold standard”

“…The involvement of key stakeholders throughout is key because then the core outcomes will be aligned to the priorities of key stakeholders, including people living with dementia and family carers (Morbey et al, 2019). To our knowledge, there are only two published core outcome sets in the field of dementia, concerning people living with dementia in relation to physical activity interventions (Gonçalves et al, 2019) and broader nonpharmacological interventions (Morbey et al, 2019;Reilly et al, 2020).…”