Informal carers of older people provide a valuable role in supporting older people with diverse and often multiple comorbidities, including dementia, to remain living at home. In Australia, 91% of people living with dementia at home are supported by informal carers (usually a spouse or an adult child) (Brooks and Ross, Reference Brooks and Ross2015). This is often combined with some formal support from community care agencies, and both of these factors are pivotal in sustaining this care-giving situation.
Carers of older people are often older (45% are ≥55 years of age) (Australian Institute of Health and Welfare, 2019), and many have multiple comorbidities of their own. One Australian study of 96 carer–care recipient dyads reported that informal carers have on an average three existing health conditions, with the most commonly reported health problems being arthritis (64%) and back pain (63%) (Dow et al., Reference Dow, Meyer, Moore and Hill2013). Unfortunately, research has shown that carers tend to focus on optimizing health and well-being for their care recipients, but tend to put limited attention on their own health and well-being. Nearly three-quarters of carers for people with dementia indicated they were somewhat or very concerned about maintaining their own health (Fargo, Reference Fargo2010). Maintaining health and well-being of carers needs to focus on managing their existing health problems, as well as from a health promotion perspective, minimizing risk of new health problems for themselves into the future. The obvious impact of optimizing health and well-being of carers of older people is the likely ability to sustain their caring role for longer, and this may enhance the ongoing capacity for the person receiving care to remain at home.
Informal carers of people with dementia face challenging demands, which adds complexity and contributes to higher levels of negative outcomes for the carer, relative to carers of people who do not have dementia (Teahan et al., Reference Teahan, Lafferty, Cullinan, Fealy and O’Shea2020). These include challenges associated with their carer role, dealing with personality changes in the person being cared for, and managing and coping with the behavioral and psychological symptoms of dementia (Krutter et al., Reference Krutter, Schaffler-Schaden and Essl-Maurer2020). These aspects of care can contribute to depression, stress, social isolation (for the carer and the person they provide care for), and other negative impacts on health and well-being.
There is growing research evidence that a range of single intervention approaches can improve health and well-being outcomes for carers of older people. These have included psychosocial and education programs (Aksoydan et al., Reference Aksoydan, Aytar and Blazeviciene2019), physical activity/exercise programs (Epps et al., Reference Epps, To, Liu, Karanjit and Warren2019; Loi et al., Reference Loi, Dow and Ames2014), occupational therapy programs (Bennett et al., Reference Bennett, Laver and Voigt-Radloff2019), goal setting (Tang Yan et al., Reference Tang Yan, Clemson, Jarvis and Laver2014), and respite care (Shaw et al., Reference Shaw, McNamara and Abrams2009). Multicomponent interventions have also been shown to achieve positive outcomes (Parker et al., Reference Parker, Mills and Abbey2008). Benefits of these programs have included improved physical function (e.g. strength, fitness, activities of daily living), psychological function (e.g. reduced depression), improved quality of life, and reduced subjective carer burden. Some of this research has additionally focused on carers of older people with dementia and similar results were found (Parker et al., Reference Parker, Mills and Abbey2008).
Carers of older people often have low levels of physical activity. Increasing levels of physical activity in the wider community have been associated with benefits such as: reduced risk of multiple health problems including cardiovascular disease and type 2 diabetes, colon and breast cancer prevention, and reducing the impact of a number of existing chronic health problems such as osteoarthritis (Bellew et al., Reference Bellew, Nau, Smith and Bauman2020). Carers of older people are likely to achieve similar health benefits by increasing their physical activity. Physical activity can be incidental, by doing more general activity such as walking to the shops instead of driving; or it can be structured, whereby a formal exercise program is undertaken. Exercise approaches can broadly be divided into four different types, each of which can have different benefits on physical health: cardiovascular or fitness exercises, strength training or resistance exercises, balance exercises, and flexibility exercises. Physical activity guidelines for older people recommend multimodal approaches (Sims et al., Reference Sims, Hill, Hunt and Haralambous2010) that include each of these approaches, either within each session, or in different sessions. Effective exercise programs have included center-based/group programs, as well as home-based programs.
The paper by Madruga et al. (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) investigates mental health outcomes associated with a home-based exercise program for older (>50 years of age) female carers of people with dementia. This paper adequately describes the nature and intensity of the physical activity intervention, whereas papers in this area of research often lack detail about this aspect of the intervention. The program was a relatively intensive program, running twice per week for nine months, and each of the 72 sessions was supervised by a personal trainer performing home visits. The intervention was multimodal, including aerobic (cardiovascular), mobility, and strengthening exercises. Heart rate monitors were worn during the exercise sessions, and the aerobic exercise was aimed at 60%–65% of maximal heart rate intensity. Control participants continued their usual activity level, and received monthly nonexercise focused phone calls from the research team to support their ongoing involvement and reinforce the control conditions, including ensuring that participants were not commencing new exercise programs during the study.
It does appear that one approach to providing and supporting physical activity for carers of older people with dementia will not suit everyone. As such, having a number of evidence-based approaches available is valuable, and may support broader uptake. For example, one pre–post study gave carers of older people the choice of three different approaches to exercise (group based tai chi, yoga, or resistance training), and achieved a high participation rate amongst the carers (Hill et al., Reference Hill, Smith, Fearn, Rydberg and Oliphant2007). Other qualitative research has shown that while many older people prefer home-based approaches, some prefer the option of participating in groups, including the social benefits of group exercise (Robins et al., Reference Robins, Hill, Day, Clemson, Finch and Haines2016). Previous successful home-based programs have been reported as often using intermittent health professional supervision, and ongoing regular independent home practice (Hill et al., Reference Hill, Hunter, Batchelor, Cavalheri and Burton2015), in contrast to having every exercise session supervised by an exercise leader, as occurred in the study by Madruga et al. Ongoing independent home practice of exercise (e.g. between health professional visits) may be supported through the use of community resources such as websites that are developed to support safe exercise participation at home for older people (e.g. https://www.safeexerciseathome.org.au/), that provide resources to support safety, motivation, and choice of exercise selection, as well as links to some reviewed recommended online exercise options. Offering carers of people with dementia a suite of options for increasing their physical activity may facilitate greater uptake and sustained participation, as well as potentially targeting individual needs to a greater extent (e.g. selection of exercise to focus on balance if the carer has experienced some falls).
The outcomes reported in the paper by Madruga et al. (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) focused on mental health, and included measures of depression, psychological symptomatology, and subjective burden of care. The program achieved small-to-medium effect size improvements in depression and burden of care, and multiple linear regression identified high baseline levels of subjective burden and living in urban areas to be associated with positive subjective burden outcomes. Adherence to participation in the program was high (80% undertook >90% of the home sessions), relative to many other physical activity home-based interventions, although this is likely to be related to the personal trainer attending to supervise all sessions. Having someone attending on a regular basis may also be an incentive to ongoing participation among carers who are socially isolated.
One of the strongest barriers to carers participating in physical activity and other health promoting behaviors is lack of time (UNECE, 2019). Making a time commitment, and having someone coming to the home to oversee the exercise program is likely to have been an important factor contributing to the program becoming part of the carers’ routine in the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021). Another factor for the carer in making time for a physical activity program relates to concern about who is looking after the person they are providing care for while they undertake the program. Some previous studies have provided formal carer support or respite to enable exercise participation by carers if required (Hill et al., Reference Hill, Smith, Fearn, Rydberg and Oliphant2007). However, there are no details provided in the Madruga et al. study about whether any additional arrangements for formal care support for the person with dementia was provided to enable the carer dedicated time to participate in the exercise program. This may be an important consideration when designing physical activity interventions for carers of people with dementia to enable their participation.
Despite the positive outcomes, there is a need to consider the cost-effectiveness of this resource intense approach (staff one to one model plus travel time) in relation to other approaches. There is value in adding a cost-effectiveness evaluation to studies of this nature, which will assist policy makers and program funders to determine the likelihood of wider translation of the intervention. The authors also raise in their discussion that there may be benefit in considering two or more intervention approaches together (for example, physical activity combined with psychological approaches), that might have a stronger impact on mental health outcomes than a single intervention.
Several limitations of the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) should be considered. First, it excluded male carers (who make up approximately 38% of carers of older people) (Australian Institute of Health and Welfare, 2019), and second, there was no longer term follow-up to determine sustained benefits of the intervention beyond the nine-month formal intervention. Furthermore, although the intervention involved multimodal exercise, it did not include balance training, which may also be of additional benefit for some older carers if they have balance impairment or have had recent falls.
One final consideration is that approaches to increasing physical activity may be beneficial for both the carer and the person they care for with dementia, rather than just focusing on carers. Both group or center-based, as well as home-based physical activity programs have been shown to be safe and feasible for people with dementia living at home (Burton et al., Reference Burton, Cavalheri and Adams2015). For some carer–care recipient dyads, there may be the opportunity to explore joint physical activity options that involve both. An example of this involved a progressive walking program for people with alzheimer’s disease and their carers (Lowery et al., Reference Lowery, Cerga-Pashoja and Iliffe2014).
In summary, the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) provides some valuable findings in terms of mental health for carers of people with dementia through supervised home-based exercise. This adds to the growing evidence of improved physical and mental health outcomes in carers of older people, including those with dementia, and across a range of physical activity delivery options.
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Informal carers of older people provide a valuable role in supporting older people with diverse and often multiple comorbidities, including dementia, to remain living at home. In Australia, 91% of people living with dementia at home are supported by informal carers (usually a spouse or an adult child) (Brooks and Ross, Reference Brooks and Ross2015). This is often combined with some formal support from community care agencies, and both of these factors are pivotal in sustaining this care-giving situation.
Carers of older people are often older (45% are ≥55 years of age) (Australian Institute of Health and Welfare, 2019), and many have multiple comorbidities of their own. One Australian study of 96 carer–care recipient dyads reported that informal carers have on an average three existing health conditions, with the most commonly reported health problems being arthritis (64%) and back pain (63%) (Dow et al., Reference Dow, Meyer, Moore and Hill2013). Unfortunately, research has shown that carers tend to focus on optimizing health and well-being for their care recipients, but tend to put limited attention on their own health and well-being. Nearly three-quarters of carers for people with dementia indicated they were somewhat or very concerned about maintaining their own health (Fargo, Reference Fargo2010). Maintaining health and well-being of carers needs to focus on managing their existing health problems, as well as from a health promotion perspective, minimizing risk of new health problems for themselves into the future. The obvious impact of optimizing health and well-being of carers of older people is the likely ability to sustain their caring role for longer, and this may enhance the ongoing capacity for the person receiving care to remain at home.
Informal carers of people with dementia face challenging demands, which adds complexity and contributes to higher levels of negative outcomes for the carer, relative to carers of people who do not have dementia (Teahan et al., Reference Teahan, Lafferty, Cullinan, Fealy and O’Shea2020). These include challenges associated with their carer role, dealing with personality changes in the person being cared for, and managing and coping with the behavioral and psychological symptoms of dementia (Krutter et al., Reference Krutter, Schaffler-Schaden and Essl-Maurer2020). These aspects of care can contribute to depression, stress, social isolation (for the carer and the person they provide care for), and other negative impacts on health and well-being.
There is growing research evidence that a range of single intervention approaches can improve health and well-being outcomes for carers of older people. These have included psychosocial and education programs (Aksoydan et al., Reference Aksoydan, Aytar and Blazeviciene2019), physical activity/exercise programs (Epps et al., Reference Epps, To, Liu, Karanjit and Warren2019; Loi et al., Reference Loi, Dow and Ames2014), occupational therapy programs (Bennett et al., Reference Bennett, Laver and Voigt-Radloff2019), goal setting (Tang Yan et al., Reference Tang Yan, Clemson, Jarvis and Laver2014), and respite care (Shaw et al., Reference Shaw, McNamara and Abrams2009). Multicomponent interventions have also been shown to achieve positive outcomes (Parker et al., Reference Parker, Mills and Abbey2008). Benefits of these programs have included improved physical function (e.g. strength, fitness, activities of daily living), psychological function (e.g. reduced depression), improved quality of life, and reduced subjective carer burden. Some of this research has additionally focused on carers of older people with dementia and similar results were found (Parker et al., Reference Parker, Mills and Abbey2008).
Carers of older people often have low levels of physical activity. Increasing levels of physical activity in the wider community have been associated with benefits such as: reduced risk of multiple health problems including cardiovascular disease and type 2 diabetes, colon and breast cancer prevention, and reducing the impact of a number of existing chronic health problems such as osteoarthritis (Bellew et al., Reference Bellew, Nau, Smith and Bauman2020). Carers of older people are likely to achieve similar health benefits by increasing their physical activity. Physical activity can be incidental, by doing more general activity such as walking to the shops instead of driving; or it can be structured, whereby a formal exercise program is undertaken. Exercise approaches can broadly be divided into four different types, each of which can have different benefits on physical health: cardiovascular or fitness exercises, strength training or resistance exercises, balance exercises, and flexibility exercises. Physical activity guidelines for older people recommend multimodal approaches (Sims et al., Reference Sims, Hill, Hunt and Haralambous2010) that include each of these approaches, either within each session, or in different sessions. Effective exercise programs have included center-based/group programs, as well as home-based programs.
The paper by Madruga et al. (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) investigates mental health outcomes associated with a home-based exercise program for older (>50 years of age) female carers of people with dementia. This paper adequately describes the nature and intensity of the physical activity intervention, whereas papers in this area of research often lack detail about this aspect of the intervention. The program was a relatively intensive program, running twice per week for nine months, and each of the 72 sessions was supervised by a personal trainer performing home visits. The intervention was multimodal, including aerobic (cardiovascular), mobility, and strengthening exercises. Heart rate monitors were worn during the exercise sessions, and the aerobic exercise was aimed at 60%–65% of maximal heart rate intensity. Control participants continued their usual activity level, and received monthly nonexercise focused phone calls from the research team to support their ongoing involvement and reinforce the control conditions, including ensuring that participants were not commencing new exercise programs during the study.
It does appear that one approach to providing and supporting physical activity for carers of older people with dementia will not suit everyone. As such, having a number of evidence-based approaches available is valuable, and may support broader uptake. For example, one pre–post study gave carers of older people the choice of three different approaches to exercise (group based tai chi, yoga, or resistance training), and achieved a high participation rate amongst the carers (Hill et al., Reference Hill, Smith, Fearn, Rydberg and Oliphant2007). Other qualitative research has shown that while many older people prefer home-based approaches, some prefer the option of participating in groups, including the social benefits of group exercise (Robins et al., Reference Robins, Hill, Day, Clemson, Finch and Haines2016). Previous successful home-based programs have been reported as often using intermittent health professional supervision, and ongoing regular independent home practice (Hill et al., Reference Hill, Hunter, Batchelor, Cavalheri and Burton2015), in contrast to having every exercise session supervised by an exercise leader, as occurred in the study by Madruga et al. Ongoing independent home practice of exercise (e.g. between health professional visits) may be supported through the use of community resources such as websites that are developed to support safe exercise participation at home for older people (e.g. https://www.safeexerciseathome.org.au/), that provide resources to support safety, motivation, and choice of exercise selection, as well as links to some reviewed recommended online exercise options. Offering carers of people with dementia a suite of options for increasing their physical activity may facilitate greater uptake and sustained participation, as well as potentially targeting individual needs to a greater extent (e.g. selection of exercise to focus on balance if the carer has experienced some falls).
The outcomes reported in the paper by Madruga et al. (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) focused on mental health, and included measures of depression, psychological symptomatology, and subjective burden of care. The program achieved small-to-medium effect size improvements in depression and burden of care, and multiple linear regression identified high baseline levels of subjective burden and living in urban areas to be associated with positive subjective burden outcomes. Adherence to participation in the program was high (80% undertook >90% of the home sessions), relative to many other physical activity home-based interventions, although this is likely to be related to the personal trainer attending to supervise all sessions. Having someone attending on a regular basis may also be an incentive to ongoing participation among carers who are socially isolated.
One of the strongest barriers to carers participating in physical activity and other health promoting behaviors is lack of time (UNECE, 2019). Making a time commitment, and having someone coming to the home to oversee the exercise program is likely to have been an important factor contributing to the program becoming part of the carers’ routine in the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021). Another factor for the carer in making time for a physical activity program relates to concern about who is looking after the person they are providing care for while they undertake the program. Some previous studies have provided formal carer support or respite to enable exercise participation by carers if required (Hill et al., Reference Hill, Smith, Fearn, Rydberg and Oliphant2007). However, there are no details provided in the Madruga et al. study about whether any additional arrangements for formal care support for the person with dementia was provided to enable the carer dedicated time to participate in the exercise program. This may be an important consideration when designing physical activity interventions for carers of people with dementia to enable their participation.
Despite the positive outcomes, there is a need to consider the cost-effectiveness of this resource intense approach (staff one to one model plus travel time) in relation to other approaches. There is value in adding a cost-effectiveness evaluation to studies of this nature, which will assist policy makers and program funders to determine the likelihood of wider translation of the intervention. The authors also raise in their discussion that there may be benefit in considering two or more intervention approaches together (for example, physical activity combined with psychological approaches), that might have a stronger impact on mental health outcomes than a single intervention.
Several limitations of the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) should be considered. First, it excluded male carers (who make up approximately 38% of carers of older people) (Australian Institute of Health and Welfare, 2019), and second, there was no longer term follow-up to determine sustained benefits of the intervention beyond the nine-month formal intervention. Furthermore, although the intervention involved multimodal exercise, it did not include balance training, which may also be of additional benefit for some older carers if they have balance impairment or have had recent falls.
One final consideration is that approaches to increasing physical activity may be beneficial for both the carer and the person they care for with dementia, rather than just focusing on carers. Both group or center-based, as well as home-based physical activity programs have been shown to be safe and feasible for people with dementia living at home (Burton et al., Reference Burton, Cavalheri and Adams2015). For some carer–care recipient dyads, there may be the opportunity to explore joint physical activity options that involve both. An example of this involved a progressive walking program for people with alzheimer’s disease and their carers (Lowery et al., Reference Lowery, Cerga-Pashoja and Iliffe2014).
In summary, the Madruga et al. study (Reference Madruga, Gozalo, Prieto, Rohlfs and Gusi2021) provides some valuable findings in terms of mental health for carers of people with dementia through supervised home-based exercise. This adds to the growing evidence of improved physical and mental health outcomes in carers of older people, including those with dementia, and across a range of physical activity delivery options.