Disabilities | Free Full-Text | The Experiences of Older Adults with Dementia of “Balance Wise”—An Individual or Group-Delivered Exercise Programme: A Qualitative Study
1. Introduction
This paper reports a qualitative evaluation exploring the experiences of the Balance Wise participants of both older adults with dementia and their care partners. Specifically, we wished to explore (1) the acceptability and practicality of delivering the Balance Wise intervention for older adults with dementia and (2) the potential benefits of the programme regarding postural stability and falls risk.
2. Materials and Methods
2.1. Researcher Reflexivity
2.2. Participants
Care partners were defined as a person who was a family or whānau member, caregiver, or support worker who was important and central to the care and support of the participant with dementia. Hereafter, “participants” refers to the older adult with dementia participants and “care partners” to the care partner participants.
2.3. Recruitment
Recruitment was via public advertising (for example, local newspapers, public noticeboards) and via meetings and newsletters of the local Alzheimer’s Society, Age Concern, and the Disability Information Service. On expression of interest, potential participants were sent a study information sheet, a consent form, and a questionnaire. Those willing to participate contacted a research administrator via telephone or email who explained the study further, answered any questions, and checked study eligibility, and if the participant was still willing to be involved, arranged the first appointment. Participants were asked to nominate their caregiver and if their caregiver agreed to participate, written consent was gained from them as well.
2.4. Intervention: Balance Wise
For the home- and individual-based programme, participants were asked to undertake the exercises alongside their care partner, both of whom were appropriately trained in one to two home visits. To optimise engagement, participants were phoned on weeks 1, 2, 4, and 8. Participants were asked to record any adverse events in a provided diary and this information was collected via telephone calls.
2.5. Data Collection
2.5.1. Demographic Data
Self-reported (or with assistance from their care partner) demographic data on age, sex, marital status, ethnicity, education level, medical status, and history of falls and medications were collected prior to commencement of Balance Wise.
2.5.2. Interviews
2.5.3. Data Analysis
All interviews were transcribed verbatim by N.M. and crosschecked against the audio recording by an independent person (M.P.), not involved with programme delivery or data collection, to reduce errors in the transcribing. Once the transcribed data files were cleaned, the text data were read closely by both N.M. and M.P., and coding of the data commenced. On the first couple of readings and while listening to the audio recordings, any interesting ideas and quotes and intonation in the text were noted. By this means, potential codes via the grouping and naming of comparable data were generated through line-by-line open coding, each code having a unique meaning. Both the similarities and the differences in the perspective between participants and caregiver responses were noted. The codes were then discussed by N.M. and M.P., refined further, and collapsed into categories and then themes that reflected codes with similar meaning. Within each category, exemplar quotations were selected to convey its core primary message.
3. Results
3.1. Linkage between Themes
3.2. Decision Making
‘Decision making’ was an important theme as it spoke to the acceptability of the intervention. In the first instance, participants had to decide whether the intervention was acceptable for them to participate. Their initial expectation was that the intervention would help to improve postural stability; however, many also held the belief that it would also help improve their memory. As they continued with the intervention over the 10 weeks, they continued to deliberate as to whether the perceived benefits of attending the classes were worth the effort, i.e., did it continue to be an acceptable intervention, and this influenced adherence to the intervention. This decision making was influenced by participants’ ‘awareness’ of, and ‘health belief’ in, the intervention. Similar deliberation was also reported by the care partners.
In the category ‘awareness’, participants said they initially decided to join the intervention as they thought it would help their declining memory. Most interviewees were concerned and worried about their memory, that it was gradually deteriorating, especially their short-term memory. The exercise programme appeared to offer hope to battle the deterioration of their memory. For instance, Leslie mentioned during the interview “I was looking for exercises that I could do which would be beneficial for my balance and memory”. With continued involvement in the intervention, there was a growing awareness that the intervention could improve their physical performance, particularly their postural stability, while at the same time, they would be using executive function, i.e., focus while doing a task. As one of the interviewees explained:
I used to go downstairs sideways, one foot at a time. But now I go down normally, but it requires more concentration now than it used to. So, from that point of view, yes. I suppose I always have concentrated, but now I realise I must concentrate a bit more. (Wilson).
In the category ‘health beliefs’, the acceptability of the intervention was strengthened by participants’ beliefs that it would be beneficial for them. For one participant, the decision to take part in the programme was determined by the belief that the medical system facilitated health benefits and thus empowered a person to assist themselves. This belief system developed from previous positive experiences of receiving treatments from healthcare professionals. As Sue acknowledged: “The medical system has always been very helpful to me, but it is up to me too, to do things for myself, that is what I believe”.
For another participant, the internal belief that one must exercise hard to receive the benefit from exercise, drove him to try and obtain the most out of the exercise classes:
If you get on the bicycle, and put the load on, pretending [cycling] up hill, putting stress on [muscle], that’s good. The same [thing] when you do stepping. You do the stepping [similar to walking] up hill, because of the slope, it [uses a lot of] energy, and you have to work at it. No pain, no gain. (Dane).
For another participant, her internal belief was to only do exercises that she was “comfortable” doing without becoming too anxious trying to do something that she could not. Although the amount of both physical and cognitive effort applied to the exercises might have differed between participants, they all still held the health belief that participating was beneficial, thus highlighting the intervention’s acceptability.
Joana, who supported Zain (whose cognitive limitation required supported decision making) had a similar comment to make:
I thought ‘well, we’ll give that a try.’ It’s reasonable to say that [Zain] doesn’t make those decisions. I do, to try and keep him going. And since then, walking’s got a bit easier for you, hasn’t it, for you, since you’ve been coming to the programme. (Joana, caregiver).
3.3. Comprehension
It appeared that most participants were able to grasp the concept and purpose of the activities in Balance Wise (for example, activities to improve the use of the sensory system or those that were aimed to increase muscle strength), even for the multi-tasking activity that involved calculation and concentration. For instance, Wilson said: “I can understand the theory behind it, if you’re thinking of something else, in your head, you’re not thinking of where your feet are going.” (Wilson).
However, unsurprisingly, a few participants found the latter activity to be quite challenging. These tasks demonstrated to participants that some cognitive skills, which they had hitherto been unconsciously competent with, were now challenging. As one participant stated: “I found [the cognitive stimulation activity was] quite difficult. I had forgotten about that one. Yes, I found [it was] quite challenging, I had never done anything like that before, it was new, and interesting.” (Sue).
The care partners interviewed also said they could see the purpose of the whole programme, that it had exercises that focused on both cognitive and physical limitations, which was good.
Because you’ve got to think—they’ve got to try and think about what they’re doing. And I think it might help coordination, it might help, well, balance in particular, I think that’s what the biggest problem is for older people. They lose their balance, and I think that meant, yeah, those exercise programmes on the walkways and things I think would probably help quite significantly [challenging] for quite a few of them. (Joana, caregiver).
3.4. Perceived Benefits
Balance Wise was viewed as beneficial by both participants and care partners and this also spoke to its acceptability. Within this theme were two categories (‘support system’ and ‘stability’) that described in more detail how and why Balance Wise was beneficial.
3.4.1. Support System
Support systems were viewed as an important characteristic of Balance Wise that linked to decision making and acceptability. There were three support systems that were deemed important: (i) peer support, (ii) instructors’ support, and (iii) situational support (adaptability, safety, and accessibility).
Peer Support
Participating in the programme led to the development of social capital. The attendance of care partners (spouses, one ex-wife, and friends) became integral to the participants’ support system. The support system that was built via the socialising occurring during the intervention was continued outside the intervention. The participants expressed that socialising gave companionship, and this was considered particularly important for the class members who lived alone. It also delivered a sense of empowerment and motivation between members to keep going, and this was considered important for current well-being but also as a preventive action to minimise future health issues. For one participant, his support system was the basis for generating the discipline to continue exercising on a weekly basis.
Well, I enjoy the social side of it. I [found the activities were] pretty easy. [I] enjoyed and [I] like the people, very much. [The group had] a great mixture of both in personalities and the [cognitive] stage they’re at. (Hansen).
Further, the care partners could see the benefits of the class either from participating in the exercises themselves, or due to the short period of relief away from the stress of being a support person. Indeed, the care partners also found that the Balance Wise programme gave them an opportunity to make new friends.
I really like the class; I met some nice people. A couple of really nice women, that I think they have asked for my contact details. I think we will keep in touch. So that was a good aspect of it. (Cole, caregiver).
Situational Support (Adaptability, Safety, and Accessibility)
Participants said that the exercise programme was “easy” to follow and something they could adapt and include into their daily lives so that the exercise was not only something that could take place in the physiotherapy clinic but could be “done every day” at home. For example, Sue reported that she now did the one leg standing exercise that she learnt from the exercise programme at home while she watched television. Similarly, Mark and Julie said they adapted the exercises that they had learnt from the exercise programme while doing activities outdoors. Hansen said he counted a handful of money whilst walking. Julie, the only person who participated in the home-based programme mentioned:
I think I [am aware] and I have to concentrate a little bit more on my balance. For instance, recently at Papatowai, going down [the trail] was very steep and [Jim] said ‘remember your exercise’, and I [walked] down without any problems. It was a real test. (Julie).
Wilson felt that whilst most participants managed the exercises reasonably well, for some, the exercises could be a little more strenuous, especially those that involved dual tasking, for instance, simultaneous cognitive and postural stability tasks. Wilson did acknowledge though that the exercises had to be safe.
You have to think up something a little bit more strenuous on the mind or strenuous on the feet, to be able to dissociate the two, so that you did tend to lose your balance, although you can’t have people falling down all over the place. (Wilson).
Transportation to the physiotherapy clinic was not reported as a barrier to attendance. Most participants were able to catch a bus to and from the clinic. A few participants came by car and parking did not appear to be an issue. However, Julie chose to do the individual home-based exercise programme due to the time it took to travel to the clinic. She explained that:
Doing it in a group was probably more fun, but I was a bit restricted with time, in that I’m doing a lot of other things as well. And I just felt if I did it at home, it would be more conscientious effort on my part. Without wasting time coming and going. (Julie).
Participants were aware that they were part of a research study and were thus conscious of the added need to give an apology if they could not attend. They also acknowledged that it was their responsibility to attend the exercise programme and thus respect the other members who participated. Other possible barriers to attendance that participants mentioned, but were not considered major barriers, were inclement weather, challenges in getting ready to attend on time, and ill health. For one participant, however, the internal conflict he had with himself was a barrier to attendance. As his caregiver explained, he sometimes was reluctant to attend, but for no specified reason:
Well, he just didn’t really want to participate, but I encouraged him to continue the course. I say if you start something you [have to] finish it. But it worked out all right in the end. (Megan, caregiver).
3.4.2. Stability
Quite clearly, participants found value in the intervention as a means of improving their postural stability. As Dane said:
I think the [activities that] associated with balance. There were mainly—some of those were on foam, and some were without. I think the balance [activities], it’s not only [that activity] involving the muscle, [it also involving] the brain and the sensory organs. That’s what I think is the most interesting part. (Dane).
Sue reported that she had not tripped once since starting in the intervention. Wilson said that he was now able to walk downstairs “normally” even though he still needed to concentrate. Leslie said that the intervention had “increased her confidence”, that the habit of concentration had now become automatic, and that she frequently reflected on what was learnt from the intervention whilst walking downstairs, an activity she was previously afraid to do. Mark told how his general practitioner was “pleased he was participating in the exercise programme” and encouraged him to “continue” to do so. Sue also spoke of the benefits of the intervention:
Well, I know already that [exercise] helped with my walking, my balance, and [while I am] getting dressed. I have mentioned to you that I can now stand on one leg and put my trousers on. (Sue).
3.4.3. Suggested Intervention Alterations
Although Balance Wise was considered an acceptable exercise programme, participants did suggest improvements. These related to the components of the exercises, mostly about balance between repetition and variation (e.g., exercises for upper limb and for co-ordination; activities related to dual tasking), and the duration of the exercise programme. Wilson expressed:
I mean throwing somethings to one [and] another, but it’s probably a little bit lacking in [the exercise programme], [such as] an activity that involves coordination between individuals rather than coordination between hand and eye, in one individual. But coordination between- in other words, the unexpected, dealing with the unexpected. (Wilson).
It appeared that participants with memory issues had greater difficulty in completing dual task activities. While some participants felt that a multitask activity was easy, it was not for others.
You are thinking as well as physically doing something, and you [are] combining the two. You know, could have been much better if I would [have] been counting forward, but that would be too easy, wouldn’t it? (Leslie).
Some participants liked how the programme had a variety of exercises, although Cole (caregiver) felt that there should be a balance between variety and repetition. She did recognise that this would be challenging to achieve—that something is more easily remembered by doing it frequently, but at the same time variation enhanced enjoyment.
It is a hard [to achieve] balance, between systematically, repetitively, doing the same thing, and making it challenging and different. I think there was a balance there, but it needs to have a pattern for people who can pick that up and realise [each of the exercise]. It is because they [have difficulties in] memory, but they will still remember [the exercises] as they go, [and] at the same time you have to stimulate their interest. (Cole, caregiver).
Although most participants were satisfied with the short duration (30 min) of the sessions, many felt they could have been longer by about 15–30 min. Participants who were satisfied with the short duration of the exercise sessions reported that they did not feel they were tired at the end. Megan (caregiver) acknowledged that increasing the duration of sessions could increase fatigue levels, but that this could be mitigated by frequent rest periods.
He gets tired easily and he [takes a] rest most [of the] afternoons, because [he needs to] concentrate [while doing] something on his own, [such as] a code cracker and he rests for a while before continue doing his task. So, I guess, if [the exercise] is an hour, there’s [would] have to be spaces for rest where there was sitting time. (Megan, caregiver).
Some care partners expressed concern that the exercises should be individualised to the person’s ability and that a mixed level of ability in the class minimised the benefits. One caregiver felt that the group-delivered balance exercise was not suitable for a person who had significant cognitive impairment because of the potential limitation in understanding the instructions. This caregiver did not think the group-based balance exercise offered much to the person they supported. To overcome this limitation of the intervention, she suggested that the skills and exercises provided in the classes should be determined by ability level. For instance, “[When you have] a big enough cohort, perhaps split [it] into two groups, one for the less and one for the more cognitively challenged people, according to the tests that you do at the start” (Cole, caregiver).
While some participants found group-based balance exercise was “pleasant” and “fun”, other participants recognised that they should be encouraged to do more exercise at home. In other words, they realised the benefit of doing individual exercise as well.
3.5. Safety and Adverse Events
No falls or other serious adverse events related to the exercise programme were reported during the study period. Minor complaints relating to muscle soreness were reported but eased or resolved the subsequent day. One participant even commented specifically about the safety of the class: “You have got a chair near you, there is no reason why you actually collapse, unless you get suddenly lack of blood to the head.” The use of chairs to increase the level of safety during exercises was considered by participants to be good.
4. Discussion
This study aimed to qualitatively explore the acceptability and practicality of delivering the Balance Wise intervention for older adults with dementia, and the programme’s potential benefits regarding postural stability and falls risk. We established three overarching themes that spoke to these aims: decision making, comprehension, and perceived benefits.