Client, caregiver, volunteer, and therapist views on a voluntary supported group exercise programme for older adults with dementia

A qualitative research approach using semi-structured interviews was undertaken. Qualitative methods can increase the understanding of subjective experiences and provide more in-depth information about important factors for attending group activities outside the home [15]. We aimed to evaluate experiences among participants in a 12-week, group-based exercise service, delivered once a week, to community-dwelling older adults with dementia; their caregivers; volunteers that were part of the organisation of the service; and the two physiotherapists leading the group sessions.

Prior to the present study, we performed a cross-sectional study to describe physical function, activity levels, and participation in activities outside the home in a group of 100 home-dwelling older adults with cognitive decline or dementia. We also performed a qualitative study to focus on caregivers’ perspectives on how to design new PA interventions for home-dwelling older adults with dementia [16]. Our main findings in these two studies were that older people with cognitive decline and dementia do not take part in many activities outside their homes; their support network is limited; and the caregivers often have a comprehensive, demanding role as caregivers. New services should include strategies for how to support the person and their caregivers, so the person with dementia wants to take part and so that caregivers think that it is worth the required effort to motivate and support participation [16].

Our starting point was an existing fall prevention group-based exercise programme for independent older home-dwelling people, with exercise classes once a week focusing on balance and strength activities [17‐19]. In Norway, as well as in other European countries, the use of volunteers in delivery of different services is common. To ensure that people with dementia could take part, we involved volunteers from the municipality to support the participants both to get to and from the class, and during the exercise sessions. We, two researchers from the university in collaboration with physiotherapists from the municipality, developed the content of the exercise programme based on the existing fall prevention exercise programme, but put extra emphasis on the motivational element, so that the participants enjoyed the exercise class and experienced mastery of the activities. Examples of motivating factors are including games and addressing people by their names in the warm up, as well as instructors focusing on engagement through the principle “having fun while exercising”. The latter was based on the input received in a previous study, where caregivers highlighted the importance of developing meaningful and high quality offers for our target group [16].

The group activity was offered during a 12-week period, with two-hour sessions including the one-hour programme once a week in a fitness room, located in the city centre. The design of the volunteer-supported group exercise programme is presented at a glance in Table 1. Two physiotherapists led the group sessions, where the participants trained together with their volunteer. Training of volunteers prior to joining the project included information about typical challenges due to reduced cognitive functions. As volunteers in this study, guidance and recommendations on strategies were provided, but volunteers were not limited to specific ‘rules’ on how to support participants during the exercise sessions.

Four older adults who were referred to the geriatric outpatient clinic, St Olav Hospital, University Hospital of Trondheim, for a cognitive evaluation were enrolled in this study. The responsible medical doctor who identified potential participants from the geriatric outpatient clinic informed the researcher, who then asked them about participation at the outpatient clinic at the end of their evaluation. The inclusion criteria for the present study was being home-dwelling, 65 years or older, with cognitive impairment or dementia, able to walk 10 m without walking aids or support, and wanting to take part in group exercise, once a week, to maintain their physical function. We excluded people with medical contraindications for exercise, evaluated by the medical doctor at the outpatient clinic (including serious or unstable systemic disease), and those who already took part in organised exercise twice a week or more. We also recruited their caregivers, if they had any, to take part in focus group or individual interviews. During the continuous recruitment, five potential participants did not meet our criteria and three eligible persons declined participation.

The counselling service centre, for people with dementia and their families, recruited five volunteers in total. Four of them attended a course for new volunteers in the municipality, including an extra session with the physiotherapist to get information about the group exercise programme and the trial. The responsible person at the counselling service centre matched the volunteers with the older adults that participated in the group exercises, based common interests, after performing home visits to the participants and interviewing the volunteers.

From the exercise group consisting of four older adults and five volunteers, we included four older adults (M1, M2, F1, and F2) and their caregivers (C1–4), four volunteers (V1–4), and the two female physiotherapists (PT1 and PT2) that led the group exercises. All attended either a focus group or individual interviews. Table 2 describes the characteristics of the older adults recruited for the group exercises in this study, and their relation to the caregivers and volunteers. All the four caregivers who took part in interviews were women. Their relationships with the older adults were spouses (n = 2) or children (n = 2). The caregivers were not directly involved in the organisation/conduction of the group exercise training, but most of them did take part in inclusion and the matching session in their homes. The exercise period started with two older adults and three volunteers enrolled the first week, and we reached a full group at week four, with four older adults and five volunteers enrolled. We did not have any dropouts during the exercise period.

We conducted the focus groups and individual interviews either at the university hospital or in the municipality, with one of the individual interviews being performed in the participant’s home. All were performed in closed rooms without any interruptions. To ease transportation issues, we invited the older adults and their caregivers to their separate interviews on the same day. We completed two individual interviews and one group interview with the older adults, and one individual and one group interview with caregivers. We conducted a focus group interview with the volunteers, and we interviewed the two physiotherapists together.

The intervention period ran from March 2017 to early June 2017. All interviews were performed in June 2017, after cessation of group exercise programme.

An interview guide (see Additional file 1, Supplementary information) was developed based on literature and our previous study [16] to guide the discussions in all interviews. All participants were given time and opportunity to ask questions, both prior to starting the interview and after ending the interview. All interviews were audio-recorded, and one researcher transcribed verbatim. The audio-recorded data were checked by a second researcher, prior to performing any analysis.

The interview questions were designed to be open ended. Topics included why they took part and their experiences with the group exercise programme; the role of the volunteer/participant; the organisation; and their views on important factors to include when organising such services. We had similar topics for all participants, but the questions were phrased differently for the older adults participating, their caregivers, volunteers, and physiotherapist. If needed, the participants were given prompts and help, so that their experiences could be explored. Experienced researchers from the university who were not involved in the delivery of the group exercises performed the interviews, with duration between 30 and 60 min.

NVivo 8 was used for systematising the data material, and the data were then analysed by Systematic Text Condensation method (STC) [28]. To get a general sense of the data set, and in line with the STC method, two of the authors read the transcripts independently. After discussing the overall impression, the next step was to identify meaning units. In this study, we defined meaning units as text fragments reflecting information about the participants’ experience with attending the volunteer-supported group exercise programme. The authors started coding by identifying and sorting meaning units. During the phase of de-contextualising, the authors reflected on the similarities and differences of each code. Based on a consensus after reading the transcripts of all interviews, the two authors agreed on the final codes. The first and the last author coded the interviews into themes and discussed them before they were presented to a group of the participants. Present at this meeting were, in total, eight participants: older adults, caregivers, and volunteers, but none of the physiotherapists. The two researchers that conducted the interviews led the meeting, and the responsible person from the counselling centre, who acted as a coordinator during the pilot, attended as observer only. We had a second meeting for representatives from the municipality responsible for similar services, including the two physiotherapists that participated in the study. We discussed the results with those who attended these meetings, to check our findings and gain input before the final themes were defined. These meetings confirmed the themes presented, and no changes were made to the final topics/themes. The last author then selected the quotes most illustrative for the chosen themes.

The Central Norway Regional Committee for Medical and Health Research Ethics approved the study (REK 2016/1603). All persons with dementia signed an informed consent form prior to starting the exercise period. The other participants in the interviews signed informed consent forms before starting the interviews. The group exercises pilot was conducted within the Municipalities services, following safety instructions and guidelines in line with other group exercise services. Information to all participants was given orally at all stages in this study.

All participants and caregivers expressed clearly that they had a positive experience with this group exercise pilot, both as participants in the exercise groups and as caregivers to the participants. All expressed a wish to continue, with participants wanting to take part in such group exercise programme and caregivers wanting their spouse/parent to continue, should this become a permanent offer after the study period.

The topics and meaning units from the data analysis are presented in Table 3.

The group exercise we tested in this pilot study was reported as important, due to creating a social arena for the older adults where they felt they belonged. Participants got to know each other and enjoyed being part of this group. As reported by two of the volunteers: “Yes, we had coffee after each session. It has been very good. We are talking about different things, and we get to know each other very well.” (V2), and “I became very positive to the concept. As you said, I think it meant a lot for them. They have looked forward to this. “See you next week” and…”(V1).

The group was relatively small and stable, the volunteers were matched with the older adults, and together this led to a feeling of belonging, for both parties. As illustrated by these comments from two of the older adults: “…It was like that you looked forward to start” (M1), “Yes, indeed, they are so nice all of them.” (F2), and this comment from one of the volunteers:“ It is more fun to sit and talk to someone, rather than go for a walk and not meeting anyone.” (V3). One of the volunteers confirmed the feeling of belonging as illustrated with this comment:“ I did think that we would get to know the persons, talk to them, or to the person, and become like a small community, that was what I thought, but I did not know that it was going to be as it was, because we did get very close, so I was positively surprised!” (V1).

Secondly, the caregivers and the physiotherapist highlighted the equality in the group as important for building relationships. As described by one of the physiotherapists:" I felt that they were equal participants in this group. Not an “us” and “them”, but a “we” as one group. I think this strengthened the community in the group. The volunteers supported all participants in the group, not limited to the one person they had special" (PT1). This was also confirmed by the caregivers, as one described:" In that way, it has been surprisingly positive for me as well, because he has had someone to talk to. He has told me about the student and, yes not about the exercise, but...talked about your husband also, a lot, so it is very clear that…" (C1).

Thirdly, the atmosphere in the group was highlighted as important by older adults, volunteers and caregivers, as illustrated by these two quotes: “We had a very good atmosphere in the group.” (M1), and “I believe that it has been that in the whole group. I think this is important, that you have a good mood and can joke a bit” (V3). The group atmosphere was safe, and they felt that they could joke and have fun in this group.

The need for sufficient support and organisation for this group exercise was highlighted by the volunteers and the physiotherapists, because they felt this was an important element of the positive experiences reported. Firstly, they reported that the feeling of confidence was important for the older adults, because they knew each other in this small and settled group, as illustrated by these quotes: “Yes, the numbers and how settled it is … … we had a fixed sample who attended every session. It became very safe because you get familiar with them. A big group with random attenders, where there is a big exchange of people, is followed by more insecurity” (PT1), “I thought that it was going to be more like just being with that person, being just that, but it has not been like that, because it has been a group in some way.” (V1), and“ ...the participants did have a high function, but I think they felt safety knowing they got to meet the volunteers prior to starting in the group, they knew who each other were, and «ok, you will come and pick me up» then everything was ok for them.” (PT1).

Furthermore, the volunteers highlighted that they gained experience and knowledge by being part of this project. The volunteers got to know the older adults with cognitive decline and dementia and found it educational, as illustrated by these two quotes: “My wife and I did agree that we would both join, one as the driver and one as the active part matched with a person with dementia…If one was not available, the other could do it. It did work very well…after a while I found it educational. I also found it like a win-win-situation, where you do get exercise yourself…and after a while we did get to know our (participant), and then we found it very nice, especially him…the person we have picked up every time, he’s got a lot of knowledge, and it has become very nice, indeed. (V3) and" First, I am a social person, so it gave me something without any costs, something that others might appreciate. At the same time, we had a lot to talk about, as I said earlier, he is, − we cannot notice that he has dementia, he might be a bit forgetful, forgetting a word or something, but not more than what I or my wife forget. I looked forward to Thursdays. Actually.” (V3).

The volunteers and the physiotherapists reported that the support for social interaction was an important task for the volunteers within the group exercise session. As one physiotherapist described: “I think the group dynamic differs by using volunteers. They talked with them. It was rarely conversations between the persons with dementia, so the volunteers kept the conversations going” (PT1), and confirmed by one of the volunteers: “I think the social part is one of the most important tasks” (V2).

All of the older adults highlighted the importance of social time that ensured motivation to take part in activities outside their homes, as two of themsaid: “It was fun.” (M1), and “Yes, it was fun”. (M2). The caregivers confirmed this, that they thought it was important for the older adults to have something outside home to be part of, as illustrated with these comments: “Yes, because my husband is rather lonely, he does not meet many persons, so this is what he now has attended, and I do think it means something for him (C2),” It is something about that they have something, something that happens, I think it is both the experience of having the joy of exercising, but also that it is social interaction with someone else." (C2), and" I think it is very positive, because my husband has said that he thinks it is very nice to sit and have a coffee together and talk" (C2). In addition to the exercise, the coffee afterwards was equally important, as commented on by one of the volunteers: “Yes, I think it has been very positive, and I think they (older adults) also agree, both in terms of exercise, but quite as well the coffee they get afterwards, that was the highlight of the day, I think. (V2). This was also underlined by one of the physiotherapists, who said that because many are getting more isolated, motivation is a key factor to get them to take part:” What gives motivation is not important, as long as you manage to get started" (PT2).