Physical activity for people living with dementia: carer outcomes and side effects from the perspectives of professionals and family carers

BACKGROUND: Adherence to physical activity is challenging for people living with dementia, and largely dependent on carers’ involvement. Carers are likely to support physical activity based on their perceived balance between benefits and potential side effects of such intervention for both patients and themselves. Professionals also have a role in terms of optimising such interventions not only for people with dementia but also their carers. AIMS: The present study aimed to identify the priorities of carers and professionals regarding (1) outcomes of physical activity for people living with dementia on carers and (2) side effects on patients and carers. METHODS: This was a two-round prioritisation exercise. In round one, participants were asked to rank, from most to least important, 2 lists of outcomes generated in a previous systematic review and qualitative study: (i) 10 outcomes on carers; (ii) 17 side effects on patients and carers. In round two, participants were asked to consider their own ranking in round one against the overall group ranking and re-rank both lists. RESULTS: 36 carers and 39 professionals completed both rounds. The carer outcomes ranked as highest priority were “carer feeling positive and satisfied”, “carer improving wellbeing” and “making lives of carers easier”. The most undesirable side effects were “becoming agitated and confused”, “falling over” and “feeling discomfort and pain”. DISCUSSION AND CONCLUSIONS: Carers and professionals value the potential reduction in carer burden that may occur as a consequence of the person with dementia engaging in physical activity. Behavioural and psychological symptoms, falls and pain are the most undesirable side effects of physical activity. Future research should aim to address, and consistently report on these outcomes. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40520-020-01636-7) contains supplementary material, which is available to authorized users.