Physiotherapy 100 (2014) 169–175
Exploring experiences of physical activity among people with Alzheimer’s disease and their spouse carers: a qualitative study R. Malthouse a,∗ , F. Fox b a
Physiotherapy Department, Royal United Hospital, Bath, UK b Department for Health, University of Bath, Bath, UK
Abstract Objectives To improve understanding about the barriers and facilitators to physical activity for people with Alzheimer’s disease and their spouse carers, and to consider the development of activity interventions that would be acceptable, sustainable and feasible for both groups. Design A qualitative approach, using semi-structured interviews, facilitated exploration of physical activity in a small group of people with Alzheimer’s disease and their spouse carers. Setting Participants were recruited from one memory clinic in South West England. Participants Potential participants were identified by clinical psychologists at the memory clinic and were given information about participating in the research. Five people with Alzheimer’s disease and their spouse carers were subsequently recruited for semi-structured interviews, which took place at the memory clinic. Interviews were audio-recorded and transcribed verbatim. Main outcome measures Qualitative data were analysed using thematic analysis. Three major themes have been presented. Results The findings illustrate the complex interplay between the overarching themes ‘self’, ‘others’ and ‘couple’ that affect physical activity for both people with Alzheimer’s disease and their spouse carers, and which are linked to the progression of dementia. Conclusions An individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design. © 2013 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Physical activity; Alzheimer’s disease; Spouse carers; Qualitative
Introduction Few published studies explore the personal experiences of physical activity in people with dementia. Some barriers to physical activity and adaptation strategies have been identified for this group [1]. Signs of dementia including memory impairment, aphasia, ataxia and behavioural changes may affect participation in physical exercise programmes, causing lower attendance and adherence rates, reduced exercise intensity and a higher risk of adverse events [2]. Spouse carers may support their partners to perform regular physical activities [1]. Conversely, caring for a person with dementia can have ∗ Corresponding author at: Physiotherapy Department, Royal United Hospital, Combe Park, Bath BA1 3NG, UK. Tel.: +44 1225824293; fax: +44 1225825978. E-mail addresses: [email protected], [email protected] (R. Malthouse).
a negative impact on the physical and psychological health of the carer [3,4], and the extent to which carers can adhere to recommended activity guidelines for older people [5] may be compromised. The role of carers in facilitating activity for people with dementia and their own corresponding levels of physical activity therefore warrants further research. The term ‘physical activity’ is used here to include all forms of activity such as functional walking or cycling, work-related activity, active recreation, dancing, gardening, playing active games, and organised and competitive sport [5]. The term ‘carer’ is used to refer to the informal spouse carer of the participant with dementia. Dementia is a common neurodegenerative disorder, estimated to affect one in six people over 80 years of age [6]. Symptoms include cognitive impairment, behavioural disturbance and progressive physical decline, which can occur early in the disease, impairing postural control and gait ability
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[7], resulting in reduced independence in activities [8]. Estimates suggest that over 1.7 million people in the UK will be living with dementia by 2051 [6], with associated cost implications for healthcare and social services. The development of interventions that support or reduce the care needs of this population is therefore critical. Non-pharmacological interventions, including physical exercise, have attracted attention based on growing evidence of links to a range of physical, psychological and social benefits for people with dementia [9]. A systematic review found some evidence that physical activity slows cognitive decline in people with dementia [10]. A more recent systematic review evaluated the effects of exercise intervention on physical function for people with dementia in residential care, and concluded that combined walking and functional weight-bearing exercise improves walking performance and reduces the rate of decline in functional activities. However, it was unclear whether physical exercise could improve cognitive functions amongst people with dementia, due to the low methodological quality of available studies [2]. The current study aimed to improve understanding about the experiences of physical activity for people with Alzheimer’s disease and their spouse carers. The research question was ‘What are the barriers and facilitators to physical activity for people with Alzheimer’s disease and their spouse carers?’. The objectives of this study were: to gain insight into perceptions about the importance of physical activity; and to understand potential barriers and facilitators to activity and consider the development of activity interventions that would be acceptable, sustainable and feasible for both people with Alzheimer’s disease and their spouse carers.
Design A qualitative approach was undertaken to explore the experiences of people with Alzheimer’s disease and their carers to facilitate in-depth understanding of the relevant issues. Based on an applied healthcare issue, the research was not underpinned by a specific philosophical stance [11], but was guided by inductive thematic analysis which is increasingly viewed as a methodology in its own right [12].
Ethics and research governance Ethical approval for the study was granted by the South West Ethics Committee and Bath and North East Somerset Primary Care Team.
Participants A purposeful sampling strategy was employed to identify five pairs of people with Alzheimer’s disease and their spouse carers from a memory clinic that was supporting the
research. Although small, this number fitted the qualitative framework, where the aim was not to reach saturation but to account for the rich, individual experiences of the people with Alzheimer’s disease and their carers, and to identify common themes.
Inclusion criteria for the spouse couple • One member of the couple has a diagnosis of Alzheimer’s disease. • Person with Alzheimer’s disease has some insight into their diagnosis. • Both able to speak conversational English. • Both able to understand the research and provide informed consent. • Living together in a domiciliary setting (not a residential or nursing home).
Procedure Experienced clinical psychologists, with understanding of issues about capacity and consent, recruited participants. The people with Alzheimer’s disease were all involved in clinical drug trials that were unrelated to this research project. Spouse couples who met the inclusion criteria, and who agreed to their contact details being passed on to the primary researcher (RM), were provided with participant information packs. The researcher telephoned them to explain the study, answer questions and arrange a suitable time for the interviews. Five people with Alzheimer’s disease and five spouse carers, all aged between 64 and 84 years, were recruited. Mini Mental State Examination scores for people with Alzheimer’s disease ranged between 18 and 21 out of 30. Interviews Development One-to-one semi-structured interviews were used to explore the salient issues and address the research question. An interview schedule was developed with input from the project steering group, which included two carers of people with dementia, a consultant geriatrician, two clinical psychologists, a physiotherapist working within the older people’s mental health team, a qualitative researcher and an activity co-ordinator from AGE UK. The interview schedule contained open-ended questions about the participant’s past and current levels of activity, their understanding of the benefits of activity, ideas about potential activity interventions and implications of having dementia (or caring for someone with dementia) on activity levels. The researcher piloted the interview schedule with volunteers to ensure that the questions were well framed.
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Conduction Semi-structured interviews were undertaken by a physiotherapist (RM) and qualitative researcher (FF) at the memory clinic at a time that was convenient for the participants. Consent forms were signed prior to the interviews, which took place concurrently in separate rooms to enable the participants to speak openly about their experiences and to avoid potential power imbalances between the couples. Although guided by the interview schedule, participants were encouraged to elaborate and reflect on the most important aspects of activity in their lives. Interviews lasted for an average of 40 minutes. They were recorded using digital voice recorders, transcribed verbatim and all identifying information was removed to ensure anonymity.
Analysis Data were analysed using Braun and Clarke’s six-stage inductive thematic analysis framework (2006). This approach offers a flexible and theoretically independent tool for indepth qualitative analysis by applied health researchers. Reflections and memos that had been recorded by the researchers after the interviews enabled a deeper level of analysis. Two researchers (RM, FF) undertook initial coding of four randomly selected transcripts, and discussed their interpretations in order to reach consensus about initial themes. Coding of the remaining transcripts was undertaken by RM and reviewed (by FF) for reliability. A summary of the themes was presented to the steering group for verification.
Findings The three over-arching themes and related subthemes that were developed inductively from the data are summarised in the following section and are illustrated with verbatim quotes from participants (see Boxes 1 to 6) Theme 1: self ‘Self’ encompasses the internal factors reported by participants that influenced their experience of physical activity, reflecting their motivations for being active. It is notable that this group of people with Alzheimer’s disease and their carers demonstrated broadly positive attitudes to physical activity. Self: knowledge, beliefs and values (Box 1) An appreciation of the benefits of engaging in exercise influenced the participants’ current activity levels. Although they did not demonstrate understanding of the specific benefits that exercise can have for people with Alzheimer’s disease, participants did acknowledge that activity can affect mood, weight and flexibility, and that it ‘slows the rate of
Box 1: Self: knowledge, beliefs and values ‘You know yourself, you know what you can do.’ (Person with Alzheimer’s disease 5a) ‘I just think if you keep the body active, it’s gonna keep your mind active.’ (Carer 4b) ‘I don’t think I need to join any group that is telling me what to do.’ (Person with Alzheimer’s disease 2a) ‘I have always walked up the escalators. You know, that’s part of the thing I do, I want to hear my heart pumping away, but most people don’t.’ (Carer 1b)
deterioration of your body as you get older’ (Carer 1b). The link between ‘healthy body, healthy mind’ was reported by both people with Alzheimer’s disease and carers in relation to themselves and others. Perception of their own aging bodies was linked to exercise intensity. Only a minority of participants wished to push themselves physically, and several carers and people with Alzheimer’s disease reported that they had no wish to ‘break into a sweat’ or ‘feel puffed’ during exercise or physical activity. Furthermore, it was reported that feeling ‘forced’ to participate in physical activity was undesirable. Self: freedom (Box 2) The loss of freedom associated with dementia affected activity levels of both people with Alzheimer’s disease and their spouses, and was connected with feelings of blame, guilt, worry and frustration. Being unable to leave the house alone, due to concern about getting lost, clearly affected personal freedom and reduced opportunities to be active. For carers, the ‘loss of freedom’ was often related to difficulty in leaving their spouse alone. However, engaging in activities together could also cause problems; for example, if the person with dementia was deemed unsafe to ride a bike. Group activities, such as skittles, could also present challenging social situations, and for some carers, it became impossible to continue with activities that they had previously enjoyed.
Box 2: Self: freedom ‘You can see the doors closing everywhere and all these things that have to come to a halt.’ (Carer 2b) ‘I don’t tend to do things like I used to, you know, I kind of just went down a shop, those are the things I miss most of all . . . Just to do what I want to so, when I want to do it. I want to do things I want to do myself, on my own personally, than be, you know, be guided by someone who says you have to do this.’ (Person with Alzheimer’s disease 3a) ‘You get to rely on someone else sometimes.’ (Person with Alzheimer’s disease 4a)
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Box 3: Self: past activity ‘One bad experience could be upsetting enough, I think, to stop someone participating. . .gradually build up to something that you both feel confident and comfortable doing.’ (Carer 2b) ‘I used to ride a bike to and from work in those days.’ (Person with Alzheimer’s disease 2a) ‘We did go swimming but we haven’t been swimming for quite some while now. We learnt to swim in the latter years really.’ (Person with Alzheimer’s disease 4a)
Self: past activity (Box 3) It emerged that activities that participants had enjoyed all their lives were more likely to be sustained into older age, particularly when both partners enjoyed the activity. Continuation of a shared interest, such as walking or cycling, was usually moderated in duration and intensity as dementia progressed. Facilitators to walking included community walking groups, volunteer walking guides and dog walking. Barriers included health conditions (that caused pain or risk of falling) for either the person with Alzheimer’s disease or their carer, and bad weather. Not all participants were keen to resume activities they had enjoyed in the past as they felt that they had ‘been there, done that’ (Person with Alzheimer’s disease 5a). The analysis suggests that participation in new activities, such as community walking groups or gym sessions, tended to ‘fizzle out’. Carers also highlighted that new activities would need to be introduced slowly for people with Alzheimer’s disease to avoid ‘bad experiences’. Theme 2: others (Box 4) ‘Others’ illustrates both the positive and negative influence that social interaction with other people might have on activity levels for this group of people with Alzheimer’s disease and their carers. Although many people with Alzheimer’s disease struggle to engage in lengthy conversations, the social interactions associated with structured activity were valued. However, a lack of understanding by other people about the effects of dementia, such as coping with social situations and managing functional tasks, was a barrier to activity participation. Both people with Alzheimer’s disease and carers articulated the value of exercising or undertaking activities with other people with whom they could identify. Being around people who ‘understand my problem’ (Person with Alzheimer’s disease 3a) made group activity for people with Alzheimer’s disease more comfortable and enjoyable. In particular, the person leading the activity or exercise clearly affected the participants’ enjoyment and adherence to structured activity.
Box 4: Others: social interaction ‘It’s just a social occasion, just saying good morning to people, hello, making, cos he makes silly jokes all the time to people going to their work, y’know. The staff on reception are lovely people and, y’know, they welcome you. You meet the same people coming out, who are even earlier than we are, and the people in the pool. They all know him and know what he’s like and he gets his leg pulled and does the same. So it’s very upbeat.’ (Carer 2b) ‘because lots of people don’t understand do they (about dementia). They cast it aside as though it’s nothing but it is quite a big thing really.’ (Person with Alzheimer’s disease 3a) ‘The lady who has the class is delightful and she’s brilliant. . .after having had a yoga session, I feel as though I’m on cloud nine.’ (Person with Alzheimer’s disease 1a) ‘Up there (day centre) all the people are in the same as me so we all sort of get together and have a chat, have a laugh like, y’know a joke and it makes it easy.’ (Person with Alzheimer’s disease 5a) ‘I think it is more important for me to get out and be involved with other people and y’know have exercise as much as you can, y’know and be involved with other carers as well.’ (Carer 5b) Theme 3: couple This theme encapsulates ways in which activity levels are affected by having Alzheimer’s disease or caring for a person with Alzheimer’s disease. Carers appeared to influence the opportunities to engage in activity by encouraging regular walks and taking people with Alzheimer’s disease to venues for exercise, such as day centres and leisure centres. Conversely, they also restricted opportunities for the person with Alzheimer’s disease to leave the house alone, due to anxiety about them falling or getting lost. Couple: changing roles (Box 5) Changing roles within the couple relationship were often linked to the progression of dementia and affected the amount of activity that each spouse undertook. Taking on more or all of the driving, household tasks and caring roles led carers to feel tired or less energetic. The increased physical activity associated with caring often limited their time and willingness to start or continue with new activities. Those carers who were able to get some free time valued the opportunity to engage in structured exercise for themselves, such as yoga. Whilst carers took on more active domestic roles, people with Alzheimer’s disease commonly became less active within the home. Some spent considerable amounts of time ‘resting’ and ‘staring at the four walls’ (Carer, 2b). Encouraging people
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Discussion Box 5: Couple: changing roles ‘I do feel he is sort of sat there and I wish he would do something but I tried yesterday. I said ‘Could you clean the silver?’ but I ended up having to do it myself and that’s what happens’ (Carer 3b) ‘I am dealing with my problem (osteoarthritis of the knee), but perhaps it affects him in a way he can’t do so much walking and activities.’ (Carer 3b)
with Alzheimer’s disease to engage in more household tasks was often problematic. Conversely, some carers had health problems, such as arthritis, that affected their ability to be active with their spouse. Couple: ‘good days, bad days’ – routine and mood (Box 6) The importance of routine in sustaining activity for people with Alzheimer’s disease was highlighted. However, sustaining routines was affected by factors such as the closure of leisure centres over bank holidays. The health, physical ability and energy levels of both the carer and the person with Alzheimer’s disease were also crucial. Difficulties in adapting to a change in routine prevented some couples from taking holidays, which in turn limited opportunities to engage in new activities, such as dancing. Positive feelings, associated with being active, and negative feelings, associated with inactivity, affected both people with Alzheimer’s disease and carers. Some carers acknowledged that starting to feel ‘down’ could be very detrimental to their spouse and lead to inactivity. Responsibility for managing the link between mood and activity rested largely with carers.
Box 6: Couple: ‘good days, bad days’ – routine and mood ‘The odd day we don’t go, on days like Christmas Day and New Year’s Day when you can’t go, he comments that he missed his swim this morning. He really misses it when we don’t go. . .so it’s a sort of slightly established routine that we just got into and improved on and it suits him.’ (Carer 2b) ‘I get up every morning and I know then whether I’m going to be having a good day or a bad day.’ (Person with Alzheimer’s disease 5a) ‘It’s quite easy for him to slip into a depression. Just sitting on the sofa and staring at the wall or television is not good. So we try to get that bit under our belts everyday.’ (Carer 2b) ‘We walk to the shops quite often. Weather permitting.’ (Person with Alzheimer’s disease 4a)
This study set out to explore barriers and facilitators to physical activity for people with Alzheimer’s disease and their carers. An interpretation of the findings located obstacles and enablers to activity within ‘self’, ‘others’ and ‘couples’, as discussed below. The theme ‘self’ increases understanding about why some people with dementia are difficult to engage in physical activity [2]. People with Alzheimer’s disease may dislike prescribed activity, and awareness of their physical capabilities and limitations compounds this. The theme ‘couple’ offers greater insight into the crucial and dynamic relationship between the carer and the person with Alzheimer’s disease, highlighting the perceived loss of personal freedom and increasing reliance on carers. This is central to understanding potential barriers and facilitators to activity for people with Alzheimer’s disease. As experts in their spouse’s condition, carers often act as facilitators to activity and also as gatekeepers, protecting people with Alzheimer’s disease from potentially dangerous or stressful situations. A longitudinal study also showed that, over time, carers take over decision making for people with Alzheimer’s disease by reducing their options [13]. Although the people with Alzheimer’s disease in this study rarely attributed their participation in activity to decreasing cognitive abilities, carers acknowledged that progression of dementia often corresponds with increased physical demands for themselves and decreased activity levels for people with Alzheimer’s disease. This supports evidence that elderly carers of people with dementia engage in demanding and time-consuming care including heavy physical tasks [14]. Time constraints affect couples’ ability and willingness to commit to regular exercise, which reflects the experiences of participants with other neurodegenerative conditions, for whom lack of time and fear of falls are major barriers to participation in physical activity [15]. The current study extends knowledge by illustrating how the impact of each other’s moods (having a ‘good or bad day’) affected the amount of activity or exercise taken individually or as a couple. The findings highlight how couples modify activities that they have enjoyed throughout their lives. Walking was particularly popular, and both obstacles and facilitators to regular walks were identified (including health and weather) that are consistent with research for other health conditions [16]. Regular outdoor walks may play an important part in everyday life for people with Alzheimer’s disease by creating meaningful routines and improving well-being and perceived health [1]. While evidence that walking improves or maintains cognitive function is not established, it has been shown to reduce decline in walking performance [2]. Considering activities that people have enjoyed in the past and wish to continue or start again represents a potentially sustainable route to promoting active lifestyles for this group. Reminiscence therapy, involving the discussion of past activities and experiences, is a popular psychosocial intervention in dementia care [17]. This
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could potentially be adapted to promote sustained engagement in physical activity, such as walking, for people with Alzheimer’s disease and could be a fruitful area for future research. The development of exercise interventions for this population was an objective of this research. However, through the process of the interviews and analysis, it became clear that the focus should be on encouraging and maintaining active lifestyles rather than structured exercise. In order to offset sedentary time, it might be useful for healthcare professionals to work with couples to set goals and targets that fit with routines, preferred forms of exercise and functional activities, such as walking, shopping, housework and gardening. In particular, initiatives that allow carers time and opportunities to engage in exercise or activities that they enjoy is crucial to offset their decreasing personal freedom and increasing caring roles. Social attitudes towards dementia play a key role in enabling or preventing physical activity. The theme ‘others’ reflects the need for activities to be facilitated by people and organisations who understand the unique needs of people with Alzheimer’s disease. This is timely with the move towards ‘dementia-friendly communities’ that might go some way towards providing environmental structures, public awareness and increased social understanding that support people with Alzheimer’s disease in leading active lifestyles [6]. In summary, the findings highlight that a ‘one size fits all’ approach to developing and delivering activity interventions is not appropriate for people with Alzheimer’s disease. Understanding the specific attitudes, beliefs and values of people with Alzheimer’s disease and their carers may help to motivate and encourage them to engage in activities that are feasible and sustainable. In particular, goal setting may be a useful approach if it is closely aligned with a couple’s own needs and preferences. Goal-setting physical activity counselling interventions have been found to have a positive impact on self-selected goals for older people [18]. In some localities, dementia advisors are being employed to support and advise people with Alzheimer’s disease and their families. Further research could evaluate whether these advisors are able to help set up individualised activity plans that are person-centred and goal-centred. Awareness of the specific benefits of activity, such as improving cognition, behaviour and functional ability, was not demonstrated by this group of people with Alzheimer’s disease and their carers. This indicates the potential for the provision of greater education, awareness and information. This could be combined with advice and support in setting personal activity plans. Limitations The sample size for this study was small and the researchers are therefore cautious about inferring generalisability. However, 10 participants is appropriate for a qualitative framework, and this number enabled an exploration
of individual experiences. The depth of analysis was limited by the use of thematic analysis, which facilitates examination of underlying issues, assumptions and conceptualisations that are theorised as shaping or informing the semantic content of the data [12]. Future research in this area could use interpretive phenomenological analysis [19] to provide more detailed, meaningful insights into participants’ subjective views. This was not used in the current study due to concern about the challenge for people with Alzheimer’s disease to articulate and assign meaning to their lived experiences [20]. The people with Alzheimer’s disease were all taking part in drug trials, indicating that they were likely to be more active and have fewer comorbidities than their age-matched peers. In addition, they may have been more motivated, both in terms of being active and volunteering to take part in research, which may not be representative of people with Alzheimer’s disease. However, this allowed the researchers insight into how having Alzheimer’s disease, or caring for people with Alzheimer’s disease, affects activity, rather than comorbidities linked to frailty and old age. The researchers were aware that the issues raised in the interviews caused some participants to consider whether they needed to undertake more activity. Whilst this could be considered to be a positive byproduct, participants were reassured that the researchers were non-judgemental and were interested in their experiences and opinions. Conclusion The findings suggest that an individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design. Ethical approval: NRES Committee South-West REC reference : 11/SW/0125; Bath and North East Somerset PCT reference : 2011/036, the local research ethics committee and the Research and Development Department at the Royal United Hospital Bath. Funding: Research and Development Department at the Royal United Hospital Bath. Conflict of interest: None declared. Acknowledgements The authors acknowledge the contributions of: Dr. K. Nolan for assistance with recruitment and project management; Dr. C. Dyer and the steering group members; A. Burton, Dr. M. Ede, Dr. L. Foster, A. Clyne, V. Bishop, P. Smith for their invaluable feedback at all stages of the project. References [1] Cedervall Y, Aberg AC. Physical activity and implications on wellbeing in mild Alzheimer’s disease: a qualitative case study on
R. Malthouse, F. Fox / Physiotherapy 100 (2014) 169–175
[2]
[3] [4]
[5]
[6]
[7]
[8]
[9]
two men with dementia and their spouses. Physiother Theory Pract 2010;26:226–39. Littbrand H, Stenvall M, Rosendahl E. Applicability and effects of physical exercise on physical and cognitive functions and activities of daily living among people with dementia: a systematic review. Am J Phys Med Rehabil 2011;90:495–518. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009;11:217–28. Thompson CA, Spilsbury K, Hall J, Birks Y, Barnes C, Adamson J. Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics 2007;7:18. Department of Health, Physical Activity, Health Improvement and Protection. Start Active, Stay Active: A report from the four home countries’ Chief Medical Officers. London: Department of Health; 2011. https://www.gov.uk/government/publications/start-active-stay-activea-report-on-physical-activity-from-the-four-home-countries-chiefmedical-officers (last accessed 5th May 2013). Lakey, L. Chandaria, K. Senior. Quince, C. Kane, M. Saunders, T. Dementia 2012: A National Challenge. Alzheimers Society. 2012. London http://www.alzheimers.org.uk/dementia2012 (last accessed 14th April 2013). Allan LM, Ballard CG, Burn DJ, Kenny RA. Prevalence and severity of gait disorders in Alzheimers and non-Alzheimer’s dementias. J Am Geriatr Soc 2005;53:1681–7. Blaum CS, Ofstedal MB, Liang J. Low cognitive performance, comorbid disease and task specific disability: findings from a nationally representative survey. J Gerontol A: Biol Sci Med Sci 2002;57:M523–31. Christofoletti G, Oliani M, Gobbi S. A controlled clinical trial on the effects of motor intervention on balance and cognition in institutionalized elderly patients with dementia. Clin Rehabil 2008;22:618–26.
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[10] Forbes D, Forbes S, Morgan DG. Physical activity programs for persons with dementia. Cochrane Database Syst Rev 2008;3:CD006489. [11] Patton MQ. Qualitative research and evaluation methods. 3rd ed. SAGE Publications Inc.; 2001. [12] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101. [13] Samsi K, Manthorpe J. Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. Int Psychogeriatr 2013;25:949–61. [14] Jansson W, Nordberg G, Grafström M. Patterns of elderly spousal caregiving in dementia care: an observational study. J Adv Nurs 2001;34:804–12. [15] Ellis T, Boudreau JK, DeAngelis TR, Brown LE, Cavanaugh JT, Earhart GM, et al. Barriers to exercise in people with Parkinson’s disease. Phys Ther 2013;93:628–36. [16] Robins SM, Jones GR, Birmingham TB, Maly MR. Quantity and quality of physical activity are influenced by outdoor temperature in people with knee osteoarthritis. Physiother Can 2013:1–7. [17] Woods B, Spector AE, Jones CA, Orrell M, Davies SP. Reminiscence therapy for dementia (Review), Cochrane Database of Systematic Reviews, (2005) Issue 2. Art. No.: CD001120. [18] Hall, Crowley GM, Bosworth HB, Howard TA, Morey MC. Individual progress toward self-selected goals among older adults enrolled in a physical activity counselling intervention. J Aging Phys Act 2010;18:439–50. [19] Smith JA, Osborn M. Interpretative phenomenological analysis. Qualitative psychology: a practical guide to research methods. London: Sage; 2003. [20] Bouregeois MS. ‘Where is my wife and when am I going home?’ The challenge of communicating with persons with dementia. Alzheimer’s Care Quart 2002;3:132–44.
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Exploring experiences of physical activity among people with Alzheimer’s disease and their spouse carers: a qualitative study R. Malthouse a,∗ , F. Fox b a
Physiotherapy Department, Royal United Hospital, Bath, UK b Department for Health, University of Bath, Bath, UK
Abstract Objectives To improve understanding about the barriers and facilitators to physical activity for people with Alzheimer’s disease and their spouse carers, and to consider the development of activity interventions that would be acceptable, sustainable and feasible for both groups. Design A qualitative approach, using semi-structured interviews, facilitated exploration of physical activity in a small group of people with Alzheimer’s disease and their spouse carers. Setting Participants were recruited from one memory clinic in South West England. Participants Potential participants were identified by clinical psychologists at the memory clinic and were given information about participating in the research. Five people with Alzheimer’s disease and their spouse carers were subsequently recruited for semi-structured interviews, which took place at the memory clinic. Interviews were audio-recorded and transcribed verbatim. Main outcome measures Qualitative data were analysed using thematic analysis. Three major themes have been presented. Results The findings illustrate the complex interplay between the overarching themes ‘self’, ‘others’ and ‘couple’ that affect physical activity for both people with Alzheimer’s disease and their spouse carers, and which are linked to the progression of dementia. Conclusions An individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design. © 2013 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved. Keywords: Physical activity; Alzheimer’s disease; Spouse carers; Qualitative
Introduction Few published studies explore the personal experiences of physical activity in people with dementia. Some barriers to physical activity and adaptation strategies have been identified for this group [1]. Signs of dementia including memory impairment, aphasia, ataxia and behavioural changes may affect participation in physical exercise programmes, causing lower attendance and adherence rates, reduced exercise intensity and a higher risk of adverse events [2]. Spouse carers may support their partners to perform regular physical activities [1]. Conversely, caring for a person with dementia can have ∗ Corresponding author at: Physiotherapy Department, Royal United Hospital, Combe Park, Bath BA1 3NG, UK. Tel.: +44 1225824293; fax: +44 1225825978. E-mail addresses: [email protected], [email protected] (R. Malthouse).
a negative impact on the physical and psychological health of the carer [3,4], and the extent to which carers can adhere to recommended activity guidelines for older people [5] may be compromised. The role of carers in facilitating activity for people with dementia and their own corresponding levels of physical activity therefore warrants further research. The term ‘physical activity’ is used here to include all forms of activity such as functional walking or cycling, work-related activity, active recreation, dancing, gardening, playing active games, and organised and competitive sport [5]. The term ‘carer’ is used to refer to the informal spouse carer of the participant with dementia. Dementia is a common neurodegenerative disorder, estimated to affect one in six people over 80 years of age [6]. Symptoms include cognitive impairment, behavioural disturbance and progressive physical decline, which can occur early in the disease, impairing postural control and gait ability
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[7], resulting in reduced independence in activities [8]. Estimates suggest that over 1.7 million people in the UK will be living with dementia by 2051 [6], with associated cost implications for healthcare and social services. The development of interventions that support or reduce the care needs of this population is therefore critical. Non-pharmacological interventions, including physical exercise, have attracted attention based on growing evidence of links to a range of physical, psychological and social benefits for people with dementia [9]. A systematic review found some evidence that physical activity slows cognitive decline in people with dementia [10]. A more recent systematic review evaluated the effects of exercise intervention on physical function for people with dementia in residential care, and concluded that combined walking and functional weight-bearing exercise improves walking performance and reduces the rate of decline in functional activities. However, it was unclear whether physical exercise could improve cognitive functions amongst people with dementia, due to the low methodological quality of available studies [2]. The current study aimed to improve understanding about the experiences of physical activity for people with Alzheimer’s disease and their spouse carers. The research question was ‘What are the barriers and facilitators to physical activity for people with Alzheimer’s disease and their spouse carers?’. The objectives of this study were: to gain insight into perceptions about the importance of physical activity; and to understand potential barriers and facilitators to activity and consider the development of activity interventions that would be acceptable, sustainable and feasible for both people with Alzheimer’s disease and their spouse carers.
Design A qualitative approach was undertaken to explore the experiences of people with Alzheimer’s disease and their carers to facilitate in-depth understanding of the relevant issues. Based on an applied healthcare issue, the research was not underpinned by a specific philosophical stance [11], but was guided by inductive thematic analysis which is increasingly viewed as a methodology in its own right [12].
Ethics and research governance Ethical approval for the study was granted by the South West Ethics Committee and Bath and North East Somerset Primary Care Team.
Participants A purposeful sampling strategy was employed to identify five pairs of people with Alzheimer’s disease and their spouse carers from a memory clinic that was supporting the
research. Although small, this number fitted the qualitative framework, where the aim was not to reach saturation but to account for the rich, individual experiences of the people with Alzheimer’s disease and their carers, and to identify common themes.
Inclusion criteria for the spouse couple • One member of the couple has a diagnosis of Alzheimer’s disease. • Person with Alzheimer’s disease has some insight into their diagnosis. • Both able to speak conversational English. • Both able to understand the research and provide informed consent. • Living together in a domiciliary setting (not a residential or nursing home).
Procedure Experienced clinical psychologists, with understanding of issues about capacity and consent, recruited participants. The people with Alzheimer’s disease were all involved in clinical drug trials that were unrelated to this research project. Spouse couples who met the inclusion criteria, and who agreed to their contact details being passed on to the primary researcher (RM), were provided with participant information packs. The researcher telephoned them to explain the study, answer questions and arrange a suitable time for the interviews. Five people with Alzheimer’s disease and five spouse carers, all aged between 64 and 84 years, were recruited. Mini Mental State Examination scores for people with Alzheimer’s disease ranged between 18 and 21 out of 30. Interviews Development One-to-one semi-structured interviews were used to explore the salient issues and address the research question. An interview schedule was developed with input from the project steering group, which included two carers of people with dementia, a consultant geriatrician, two clinical psychologists, a physiotherapist working within the older people’s mental health team, a qualitative researcher and an activity co-ordinator from AGE UK. The interview schedule contained open-ended questions about the participant’s past and current levels of activity, their understanding of the benefits of activity, ideas about potential activity interventions and implications of having dementia (or caring for someone with dementia) on activity levels. The researcher piloted the interview schedule with volunteers to ensure that the questions were well framed.
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Conduction Semi-structured interviews were undertaken by a physiotherapist (RM) and qualitative researcher (FF) at the memory clinic at a time that was convenient for the participants. Consent forms were signed prior to the interviews, which took place concurrently in separate rooms to enable the participants to speak openly about their experiences and to avoid potential power imbalances between the couples. Although guided by the interview schedule, participants were encouraged to elaborate and reflect on the most important aspects of activity in their lives. Interviews lasted for an average of 40 minutes. They were recorded using digital voice recorders, transcribed verbatim and all identifying information was removed to ensure anonymity.
Analysis Data were analysed using Braun and Clarke’s six-stage inductive thematic analysis framework (2006). This approach offers a flexible and theoretically independent tool for indepth qualitative analysis by applied health researchers. Reflections and memos that had been recorded by the researchers after the interviews enabled a deeper level of analysis. Two researchers (RM, FF) undertook initial coding of four randomly selected transcripts, and discussed their interpretations in order to reach consensus about initial themes. Coding of the remaining transcripts was undertaken by RM and reviewed (by FF) for reliability. A summary of the themes was presented to the steering group for verification.
Findings The three over-arching themes and related subthemes that were developed inductively from the data are summarised in the following section and are illustrated with verbatim quotes from participants (see Boxes 1 to 6) Theme 1: self ‘Self’ encompasses the internal factors reported by participants that influenced their experience of physical activity, reflecting their motivations for being active. It is notable that this group of people with Alzheimer’s disease and their carers demonstrated broadly positive attitudes to physical activity. Self: knowledge, beliefs and values (Box 1) An appreciation of the benefits of engaging in exercise influenced the participants’ current activity levels. Although they did not demonstrate understanding of the specific benefits that exercise can have for people with Alzheimer’s disease, participants did acknowledge that activity can affect mood, weight and flexibility, and that it ‘slows the rate of
Box 1: Self: knowledge, beliefs and values ‘You know yourself, you know what you can do.’ (Person with Alzheimer’s disease 5a) ‘I just think if you keep the body active, it’s gonna keep your mind active.’ (Carer 4b) ‘I don’t think I need to join any group that is telling me what to do.’ (Person with Alzheimer’s disease 2a) ‘I have always walked up the escalators. You know, that’s part of the thing I do, I want to hear my heart pumping away, but most people don’t.’ (Carer 1b)
deterioration of your body as you get older’ (Carer 1b). The link between ‘healthy body, healthy mind’ was reported by both people with Alzheimer’s disease and carers in relation to themselves and others. Perception of their own aging bodies was linked to exercise intensity. Only a minority of participants wished to push themselves physically, and several carers and people with Alzheimer’s disease reported that they had no wish to ‘break into a sweat’ or ‘feel puffed’ during exercise or physical activity. Furthermore, it was reported that feeling ‘forced’ to participate in physical activity was undesirable. Self: freedom (Box 2) The loss of freedom associated with dementia affected activity levels of both people with Alzheimer’s disease and their spouses, and was connected with feelings of blame, guilt, worry and frustration. Being unable to leave the house alone, due to concern about getting lost, clearly affected personal freedom and reduced opportunities to be active. For carers, the ‘loss of freedom’ was often related to difficulty in leaving their spouse alone. However, engaging in activities together could also cause problems; for example, if the person with dementia was deemed unsafe to ride a bike. Group activities, such as skittles, could also present challenging social situations, and for some carers, it became impossible to continue with activities that they had previously enjoyed.
Box 2: Self: freedom ‘You can see the doors closing everywhere and all these things that have to come to a halt.’ (Carer 2b) ‘I don’t tend to do things like I used to, you know, I kind of just went down a shop, those are the things I miss most of all . . . Just to do what I want to so, when I want to do it. I want to do things I want to do myself, on my own personally, than be, you know, be guided by someone who says you have to do this.’ (Person with Alzheimer’s disease 3a) ‘You get to rely on someone else sometimes.’ (Person with Alzheimer’s disease 4a)
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Box 3: Self: past activity ‘One bad experience could be upsetting enough, I think, to stop someone participating. . .gradually build up to something that you both feel confident and comfortable doing.’ (Carer 2b) ‘I used to ride a bike to and from work in those days.’ (Person with Alzheimer’s disease 2a) ‘We did go swimming but we haven’t been swimming for quite some while now. We learnt to swim in the latter years really.’ (Person with Alzheimer’s disease 4a)
Self: past activity (Box 3) It emerged that activities that participants had enjoyed all their lives were more likely to be sustained into older age, particularly when both partners enjoyed the activity. Continuation of a shared interest, such as walking or cycling, was usually moderated in duration and intensity as dementia progressed. Facilitators to walking included community walking groups, volunteer walking guides and dog walking. Barriers included health conditions (that caused pain or risk of falling) for either the person with Alzheimer’s disease or their carer, and bad weather. Not all participants were keen to resume activities they had enjoyed in the past as they felt that they had ‘been there, done that’ (Person with Alzheimer’s disease 5a). The analysis suggests that participation in new activities, such as community walking groups or gym sessions, tended to ‘fizzle out’. Carers also highlighted that new activities would need to be introduced slowly for people with Alzheimer’s disease to avoid ‘bad experiences’. Theme 2: others (Box 4) ‘Others’ illustrates both the positive and negative influence that social interaction with other people might have on activity levels for this group of people with Alzheimer’s disease and their carers. Although many people with Alzheimer’s disease struggle to engage in lengthy conversations, the social interactions associated with structured activity were valued. However, a lack of understanding by other people about the effects of dementia, such as coping with social situations and managing functional tasks, was a barrier to activity participation. Both people with Alzheimer’s disease and carers articulated the value of exercising or undertaking activities with other people with whom they could identify. Being around people who ‘understand my problem’ (Person with Alzheimer’s disease 3a) made group activity for people with Alzheimer’s disease more comfortable and enjoyable. In particular, the person leading the activity or exercise clearly affected the participants’ enjoyment and adherence to structured activity.
Box 4: Others: social interaction ‘It’s just a social occasion, just saying good morning to people, hello, making, cos he makes silly jokes all the time to people going to their work, y’know. The staff on reception are lovely people and, y’know, they welcome you. You meet the same people coming out, who are even earlier than we are, and the people in the pool. They all know him and know what he’s like and he gets his leg pulled and does the same. So it’s very upbeat.’ (Carer 2b) ‘because lots of people don’t understand do they (about dementia). They cast it aside as though it’s nothing but it is quite a big thing really.’ (Person with Alzheimer’s disease 3a) ‘The lady who has the class is delightful and she’s brilliant. . .after having had a yoga session, I feel as though I’m on cloud nine.’ (Person with Alzheimer’s disease 1a) ‘Up there (day centre) all the people are in the same as me so we all sort of get together and have a chat, have a laugh like, y’know a joke and it makes it easy.’ (Person with Alzheimer’s disease 5a) ‘I think it is more important for me to get out and be involved with other people and y’know have exercise as much as you can, y’know and be involved with other carers as well.’ (Carer 5b) Theme 3: couple This theme encapsulates ways in which activity levels are affected by having Alzheimer’s disease or caring for a person with Alzheimer’s disease. Carers appeared to influence the opportunities to engage in activity by encouraging regular walks and taking people with Alzheimer’s disease to venues for exercise, such as day centres and leisure centres. Conversely, they also restricted opportunities for the person with Alzheimer’s disease to leave the house alone, due to anxiety about them falling or getting lost. Couple: changing roles (Box 5) Changing roles within the couple relationship were often linked to the progression of dementia and affected the amount of activity that each spouse undertook. Taking on more or all of the driving, household tasks and caring roles led carers to feel tired or less energetic. The increased physical activity associated with caring often limited their time and willingness to start or continue with new activities. Those carers who were able to get some free time valued the opportunity to engage in structured exercise for themselves, such as yoga. Whilst carers took on more active domestic roles, people with Alzheimer’s disease commonly became less active within the home. Some spent considerable amounts of time ‘resting’ and ‘staring at the four walls’ (Carer, 2b). Encouraging people
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Discussion Box 5: Couple: changing roles ‘I do feel he is sort of sat there and I wish he would do something but I tried yesterday. I said ‘Could you clean the silver?’ but I ended up having to do it myself and that’s what happens’ (Carer 3b) ‘I am dealing with my problem (osteoarthritis of the knee), but perhaps it affects him in a way he can’t do so much walking and activities.’ (Carer 3b)
with Alzheimer’s disease to engage in more household tasks was often problematic. Conversely, some carers had health problems, such as arthritis, that affected their ability to be active with their spouse. Couple: ‘good days, bad days’ – routine and mood (Box 6) The importance of routine in sustaining activity for people with Alzheimer’s disease was highlighted. However, sustaining routines was affected by factors such as the closure of leisure centres over bank holidays. The health, physical ability and energy levels of both the carer and the person with Alzheimer’s disease were also crucial. Difficulties in adapting to a change in routine prevented some couples from taking holidays, which in turn limited opportunities to engage in new activities, such as dancing. Positive feelings, associated with being active, and negative feelings, associated with inactivity, affected both people with Alzheimer’s disease and carers. Some carers acknowledged that starting to feel ‘down’ could be very detrimental to their spouse and lead to inactivity. Responsibility for managing the link between mood and activity rested largely with carers.
Box 6: Couple: ‘good days, bad days’ – routine and mood ‘The odd day we don’t go, on days like Christmas Day and New Year’s Day when you can’t go, he comments that he missed his swim this morning. He really misses it when we don’t go. . .so it’s a sort of slightly established routine that we just got into and improved on and it suits him.’ (Carer 2b) ‘I get up every morning and I know then whether I’m going to be having a good day or a bad day.’ (Person with Alzheimer’s disease 5a) ‘It’s quite easy for him to slip into a depression. Just sitting on the sofa and staring at the wall or television is not good. So we try to get that bit under our belts everyday.’ (Carer 2b) ‘We walk to the shops quite often. Weather permitting.’ (Person with Alzheimer’s disease 4a)
This study set out to explore barriers and facilitators to physical activity for people with Alzheimer’s disease and their carers. An interpretation of the findings located obstacles and enablers to activity within ‘self’, ‘others’ and ‘couples’, as discussed below. The theme ‘self’ increases understanding about why some people with dementia are difficult to engage in physical activity [2]. People with Alzheimer’s disease may dislike prescribed activity, and awareness of their physical capabilities and limitations compounds this. The theme ‘couple’ offers greater insight into the crucial and dynamic relationship between the carer and the person with Alzheimer’s disease, highlighting the perceived loss of personal freedom and increasing reliance on carers. This is central to understanding potential barriers and facilitators to activity for people with Alzheimer’s disease. As experts in their spouse’s condition, carers often act as facilitators to activity and also as gatekeepers, protecting people with Alzheimer’s disease from potentially dangerous or stressful situations. A longitudinal study also showed that, over time, carers take over decision making for people with Alzheimer’s disease by reducing their options [13]. Although the people with Alzheimer’s disease in this study rarely attributed their participation in activity to decreasing cognitive abilities, carers acknowledged that progression of dementia often corresponds with increased physical demands for themselves and decreased activity levels for people with Alzheimer’s disease. This supports evidence that elderly carers of people with dementia engage in demanding and time-consuming care including heavy physical tasks [14]. Time constraints affect couples’ ability and willingness to commit to regular exercise, which reflects the experiences of participants with other neurodegenerative conditions, for whom lack of time and fear of falls are major barriers to participation in physical activity [15]. The current study extends knowledge by illustrating how the impact of each other’s moods (having a ‘good or bad day’) affected the amount of activity or exercise taken individually or as a couple. The findings highlight how couples modify activities that they have enjoyed throughout their lives. Walking was particularly popular, and both obstacles and facilitators to regular walks were identified (including health and weather) that are consistent with research for other health conditions [16]. Regular outdoor walks may play an important part in everyday life for people with Alzheimer’s disease by creating meaningful routines and improving well-being and perceived health [1]. While evidence that walking improves or maintains cognitive function is not established, it has been shown to reduce decline in walking performance [2]. Considering activities that people have enjoyed in the past and wish to continue or start again represents a potentially sustainable route to promoting active lifestyles for this group. Reminiscence therapy, involving the discussion of past activities and experiences, is a popular psychosocial intervention in dementia care [17]. This
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could potentially be adapted to promote sustained engagement in physical activity, such as walking, for people with Alzheimer’s disease and could be a fruitful area for future research. The development of exercise interventions for this population was an objective of this research. However, through the process of the interviews and analysis, it became clear that the focus should be on encouraging and maintaining active lifestyles rather than structured exercise. In order to offset sedentary time, it might be useful for healthcare professionals to work with couples to set goals and targets that fit with routines, preferred forms of exercise and functional activities, such as walking, shopping, housework and gardening. In particular, initiatives that allow carers time and opportunities to engage in exercise or activities that they enjoy is crucial to offset their decreasing personal freedom and increasing caring roles. Social attitudes towards dementia play a key role in enabling or preventing physical activity. The theme ‘others’ reflects the need for activities to be facilitated by people and organisations who understand the unique needs of people with Alzheimer’s disease. This is timely with the move towards ‘dementia-friendly communities’ that might go some way towards providing environmental structures, public awareness and increased social understanding that support people with Alzheimer’s disease in leading active lifestyles [6]. In summary, the findings highlight that a ‘one size fits all’ approach to developing and delivering activity interventions is not appropriate for people with Alzheimer’s disease. Understanding the specific attitudes, beliefs and values of people with Alzheimer’s disease and their carers may help to motivate and encourage them to engage in activities that are feasible and sustainable. In particular, goal setting may be a useful approach if it is closely aligned with a couple’s own needs and preferences. Goal-setting physical activity counselling interventions have been found to have a positive impact on self-selected goals for older people [18]. In some localities, dementia advisors are being employed to support and advise people with Alzheimer’s disease and their families. Further research could evaluate whether these advisors are able to help set up individualised activity plans that are person-centred and goal-centred. Awareness of the specific benefits of activity, such as improving cognition, behaviour and functional ability, was not demonstrated by this group of people with Alzheimer’s disease and their carers. This indicates the potential for the provision of greater education, awareness and information. This could be combined with advice and support in setting personal activity plans. Limitations The sample size for this study was small and the researchers are therefore cautious about inferring generalisability. However, 10 participants is appropriate for a qualitative framework, and this number enabled an exploration
of individual experiences. The depth of analysis was limited by the use of thematic analysis, which facilitates examination of underlying issues, assumptions and conceptualisations that are theorised as shaping or informing the semantic content of the data [12]. Future research in this area could use interpretive phenomenological analysis [19] to provide more detailed, meaningful insights into participants’ subjective views. This was not used in the current study due to concern about the challenge for people with Alzheimer’s disease to articulate and assign meaning to their lived experiences [20]. The people with Alzheimer’s disease were all taking part in drug trials, indicating that they were likely to be more active and have fewer comorbidities than their age-matched peers. In addition, they may have been more motivated, both in terms of being active and volunteering to take part in research, which may not be representative of people with Alzheimer’s disease. However, this allowed the researchers insight into how having Alzheimer’s disease, or caring for people with Alzheimer’s disease, affects activity, rather than comorbidities linked to frailty and old age. The researchers were aware that the issues raised in the interviews caused some participants to consider whether they needed to undertake more activity. Whilst this could be considered to be a positive byproduct, participants were reassured that the researchers were non-judgemental and were interested in their experiences and opinions. Conclusion The findings suggest that an individually tailored approach for couples, which values the role of the carer and accounts for the progressive and changing nature of dementia, should be a guiding principle for intervention design. Ethical approval: NRES Committee South-West REC reference : 11/SW/0125; Bath and North East Somerset PCT reference : 2011/036, the local research ethics committee and the Research and Development Department at the Royal United Hospital Bath. Funding: Research and Development Department at the Royal United Hospital Bath. Conflict of interest: None declared. Acknowledgements The authors acknowledge the contributions of: Dr. K. Nolan for assistance with recruitment and project management; Dr. C. Dyer and the steering group members; A. Burton, Dr. M. Ede, Dr. L. Foster, A. Clyne, V. Bishop, P. Smith for their invaluable feedback at all stages of the project. References [1] Cedervall Y, Aberg AC. Physical activity and implications on wellbeing in mild Alzheimer’s disease: a qualitative case study on
R. Malthouse, F. Fox / Physiotherapy 100 (2014) 169–175
[2]
[3] [4]
[5]
[6]
[7]
[8]
[9]
two men with dementia and their spouses. Physiother Theory Pract 2010;26:226–39. Littbrand H, Stenvall M, Rosendahl E. Applicability and effects of physical exercise on physical and cognitive functions and activities of daily living among people with dementia: a systematic review. Am J Phys Med Rehabil 2011;90:495–518. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009;11:217–28. Thompson CA, Spilsbury K, Hall J, Birks Y, Barnes C, Adamson J. Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics 2007;7:18. Department of Health, Physical Activity, Health Improvement and Protection. Start Active, Stay Active: A report from the four home countries’ Chief Medical Officers. London: Department of Health; 2011. https://www.gov.uk/government/publications/start-active-stay-activea-report-on-physical-activity-from-the-four-home-countries-chiefmedical-officers (last accessed 5th May 2013). Lakey, L. Chandaria, K. Senior. Quince, C. Kane, M. Saunders, T. Dementia 2012: A National Challenge. Alzheimers Society. 2012. London http://www.alzheimers.org.uk/dementia2012 (last accessed 14th April 2013). Allan LM, Ballard CG, Burn DJ, Kenny RA. Prevalence and severity of gait disorders in Alzheimers and non-Alzheimer’s dementias. J Am Geriatr Soc 2005;53:1681–7. Blaum CS, Ofstedal MB, Liang J. Low cognitive performance, comorbid disease and task specific disability: findings from a nationally representative survey. J Gerontol A: Biol Sci Med Sci 2002;57:M523–31. Christofoletti G, Oliani M, Gobbi S. A controlled clinical trial on the effects of motor intervention on balance and cognition in institutionalized elderly patients with dementia. Clin Rehabil 2008;22:618–26.
175
[10] Forbes D, Forbes S, Morgan DG. Physical activity programs for persons with dementia. Cochrane Database Syst Rev 2008;3:CD006489. [11] Patton MQ. Qualitative research and evaluation methods. 3rd ed. SAGE Publications Inc.; 2001. [12] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101. [13] Samsi K, Manthorpe J. Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. Int Psychogeriatr 2013;25:949–61. [14] Jansson W, Nordberg G, Grafström M. Patterns of elderly spousal caregiving in dementia care: an observational study. J Adv Nurs 2001;34:804–12. [15] Ellis T, Boudreau JK, DeAngelis TR, Brown LE, Cavanaugh JT, Earhart GM, et al. Barriers to exercise in people with Parkinson’s disease. Phys Ther 2013;93:628–36. [16] Robins SM, Jones GR, Birmingham TB, Maly MR. Quantity and quality of physical activity are influenced by outdoor temperature in people with knee osteoarthritis. Physiother Can 2013:1–7. [17] Woods B, Spector AE, Jones CA, Orrell M, Davies SP. Reminiscence therapy for dementia (Review), Cochrane Database of Systematic Reviews, (2005) Issue 2. Art. No.: CD001120. [18] Hall, Crowley GM, Bosworth HB, Howard TA, Morey MC. Individual progress toward self-selected goals among older adults enrolled in a physical activity counselling intervention. J Aging Phys Act 2010;18:439–50. [19] Smith JA, Osborn M. Interpretative phenomenological analysis. Qualitative psychology: a practical guide to research methods. London: Sage; 2003. [20] Bouregeois MS. ‘Where is my wife and when am I going home?’ The challenge of communicating with persons with dementia. Alzheimer’s Care Quart 2002;3:132–44.
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