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

Abstract

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.

Effectiveness of a Primary Care Program to Increase Physical Activity in People With Dementia and Their Family Caregivers (AFISDEMYF Study).

“…It is likely that the expected changes were not achieved because the duration of the intervention was only 3 months, possibly too short a period for this type of participant. It is also probable that in people with serious illnesses such as dementia, healthcare providers pay more attention to aspects related to patient morbidity and to enhancing support for caregivers, rather than implementing healthier lifestyles [3,5,41].…”

“…More than two thirds of people suffering from dementia continue to live at home, impacting signi cantly on their families [3], and worsening the quality of life both of those with dementia and their family caregivers [4]. These challenges are exacerbated by a shortage of dementia care specialists, which places an increasing burden on primary physicians to provide care for people living with dementia [5]. It is known that people with dementia (PWD) have a less active lifestyle in comparison to their peers without health problems [6].…”

“…It is known that people with dementia (PWD) have a less active lifestyle in comparison to their peers without health problems [6]. They highly depend on their caregivers to do any physical activity [5]. Because of this, informal caregivers have a great interest when it comes to physical activity intervention for people who suffer from dementia.…”

“…Unpaid caregivers are usually closed family members of the patient and it is known that more than 30% of PWD have an average of three caregiver members of their family [1]. However, most interventions focus only on the patient and just one caregiver, not taking into account the family functionality [5].…”

A novel scale for assessing caregiving competence in family caregivers of persons with dementia

“…The concept of caregiving positivity has been extensively studied since the 1990s, with a focus on caregiving satisfaction [28], meaning in caregiving [29], and self-growth [30]. Furthermore, recent intervention studies have highlighted the importance of caregiving well-being [31] and positive emotions [32,33]. Therefore, this factor was determined to be valid for constituting caregiving competence.…”