Physical Exercise for Seniors with Dementia: Potential Benefits Perceived by Formal Caregivers

Abstract

Background: The social and economic impact of dementia urge for calls to develop accessible and sustainable care for seniors with dementia (SwD). Physical exercise has been seen as a beneficial non- pharmacological therapy in the prevention and management of Dementia, and possible benefits may not impact only the participants, but also indirectly their Caregivers. Thus, this study aimed to analyze the effects of an exercise intervention on functional capacity, neuropsychiatry symptoms and quality of life (QoL) of institutionalized older adults with dementia, perceived by their formal caregivers.

Methods: Sixty-four institutionalized older adults (from both genders, aged 65–93 yrs. old), clinically diagnosed with dementia, were divided into two groups: control group (CG, n= 26) and exercise group (EG, 6-month supervised multicomponent exercise intervention n= 38). Nine caregivers (female, aged 28-47 yrs old) from nine different nursing homes, reported about care receiver’s functional capacity (Katz index), quality of life (QoL-AD) and behavioural and psychological symptoms (BPSD) in dementia (NPI) before and after 6 months of an exercise intervention (aerobic, muscular resistance, flexibility and postural exercises).

Results: A two-way ANOVA, with repeated measures, revealed significant group and time interactions on Total Katz index and NPI-score. The CG's performance functional capacity and total BPSD score worsen over time while in EG maintains these values after the exercise intervention. Moreover, formal caregiver´s distress triggered by apathy, disinhibition and aberrant motor behavior increased in CG while after 6 months of an exercise intervention no alterations were seen regarding these distress causes in EG. No significant main effects were observed for total QoL-AD.

Conclusions: Overall results show that after the exercise intervention, SwD from the EG, was capable of preserving the functional capacity and neuropsychiatric symptoms were attenuate, contributing to a lower load of distress for the caregivers.

Trial registration: clinicaltrials.gov, NCT04095962. Registered 19 September 2019, https://clinicaltrials.gov/ct2/show/NCT04095962

Background

Presently is estimated that 47 million people live with dementia worldwide, and projections show that this number may increase to more than 131 million by 2050, as populations age (1). Due to this significant prevalence, the huge social and economic impact makes Dementia one of the main age-related health problems affecting society (2). Dementia is a progressive degenerative syndrome that compromises cognitive and functional capacity essential to perform activities of daily life (ADL) autonomously (1). Additionally, Behavioral and Psychological Symptoms of Dementia (BPSD), commonly are developed over time and tends to persist throughout the course of the disease (3), having a negative impact on the health of patients and caregivers (4). Cognitive impairment, physical and functional dependence and mainly BPSD contributes to family caregivers burden and predicts the institutionalization of the Seniors with Dementia (SwD) (5).

Alzheimer’s Disease International (1), reported that 33–50% of people with dementia, in high-income countries, lives in nursing homes and more than two-thirds of care home residents have dementia. The high proportions of SwD, lack of appropriate education and training on BPSD management are physically and psychologically challenging (6) and can result in high levels of emotional exhaustion and distress of the formal caregivers (7). Moreover, after institutionalization, formal caregivers are the individuals with whom SwD have the closest relationship, being the ones who have a better knowledge of their cognitive, physical impairments, usual BPSD, Quality of Life (QoL) and are aware of the progress of the disease. This sets not only the SwD but also the formal caregiver in a central position of this worldwide health problem.

Although dementia cannot be reversed, evidence suggests that poorer performance in ADL can be delayed (8). Among others, physical exercise, ie, planned, structured, repetitive, and purposeful physical activity, constitutes a promising intervention for SwD and has received increased attention in the last years (8). Indeed, exercise interventions have a positive impact on several health outcomes in SwD, including the delay in cognitive impairment and enhancement of functional capacity (8, 9). However, little information has been gathered on the impact of exercise on BPSD (10) incidence and the stress that those symptoms can cause to the caregivers.

Developing safe and effective exercise interventions focus on the management of BPSD, aiming at delaying the progression of declines in functional ability, and improving their QoL are urgent for SwD in nursing homes, to enhance the quality of long term care and reduce formal caregiver burden. Despite caregiver’s close relationship with the SwD and the unique observational role in institutional settings, their perception of exercise intervention outcomes is not highlighted, from the authors’ knowledge. Therefore, it seems relevant to determine the hypothetical positive effect of an exercise intervention in caregivers’ perception concerning functional capacity, QoL and BPSD in institutionalized older adults with mild to moderate dementia.

Methods

Study Design

Nine nursing homes took part in this quasi-experimental non-randomized study. Four nursing homes implemented an exercise intervention for 6 months (Exercise Group- EG); while five have not participated in structured physical activity program and maintained with their normal routine, during the same period (Control Group - CG).

Participants

Nine caregivers’ supervisors aged 28–47 years, from nine different nursing homes, accepted to participate in the study, reporting about the effects of an exercise intervention performed by their care receivers.

Sixty-four care receivers from both genders, aged 65–93 years clinically diagnosed with dementia, were included in the study. The eligible subject pool was restricted to older adults with the following characteristics: age ≥ 65 years, not engaged in any regular exercise training in the last year, institutionalized for more than 6 months, all diagnosed by a physician with an age-related neurocognitive disorder (dementia) at mild or moderate stage according to Clinical Dementia Rating (CDR) (11) and lack of any diagnosed or self-reported musculoskeletal or cardiovascular disorders that contraindicate participation in moderate exercise and testing.

After initial screening, formal caregivers, care receivers and institutions received a complete explanation of the purpose, risks and procedures of the study. Written informed consent was provided. The investigation was in full compliance with the Helsinki declaration(12) and the nine institutions where the intervention took place approved all methods and procedures. The Ethical Commission of the Faculty of Sports of the University of Porto also approved this study.

A 70% minimum attendance rate to the exercise sessions was required for participants in the EG. The attendance rate for the EG was calculated by dividing the number of exercise sessions completed by participants by the full amount of sessions they were expected to perform throughout the study. The attendance levels were 78.3% or over. The reasons for missing exercise sessions were acute diseases, behavioral disorders, unwillingness to participate in an exercise session and other reasons.

(Fig. 1)

Results

Discussion

Exercise programs may be relevant for SwD living in institutional settings since they spend an extended period in those settings (24) with a high rate of functional decline (25) and they are frequently physically inactive (24, 26). Although exercise interventions are low cost, feasible and can be easily implemented, there is a lack of physical activity opportunities in institutions (27).

The caregivers as the person with more contact with SwD are the most appropriate ones to evaluate the outcomes of an exercise intervention. Therefore, the present study highlighted the caregiver's perception of exercise intervention as a possible strategy to mitigate symptoms and alleviate disease progression in institutionalized SwD.

The hypothesis that a 6-month exercise program can promote a positive caregivers’ perception concerning its effects on BPSD and functional capacity in institutionalized older adults with mild to moderate dementia was confirmed. This study also tested the hypothesis if a 6-month exercise program can promote a positive caregivers’ perception of the importance of an exercise intervention on QoL, but this hypothesis was not confirmed.

The present study attempted to adapt an exercise program for SwD, living in institutional settings to the physical exercise recommendations of ACSM and American Heart Association for older adults (13). The exercise intervention integrated several important physical abilities to perform the ADLs and involving playful and social group activities. Corroborating other studies that applied for similar training programs in terms of duration, frequency and type of population (9, 26) improvements were seen in all the physical fitness components evaluated in the group that participate in the 6 months’ exercise intervention (Fig. 2). It is possible that these positive results were linked with low scores seen before the intervention. These results also suggested that the exercise intervention was adjusted to the characteristics of our population and enough to induce physical adaptations. This underlines that the adaptation of the physical activity recommendations to this population, allows them to improve their levels of physical fitness.

Although some studies revealed positive outcomes of an exercise intervention on cognitive function, most of these studies were conducted in older adults without dementia (28, 29). In fact, in this special population physical exercise showed controversial results, with studies suggesting no alterations in general cognition in comparison with the control group (8). Our intervention did not significantly alter the general cognition in comparison with the control group. Probably, as suggested by Lautenschlager & Cox (30) to improve brain function and cognition, exercise intervention should be more extended in time.

BPSD are an intrinsic feature of dementia that is often treated with antipsychotics. Current person-centered philosophies of care in dementia, encourage non-pharmacological therapies as an alternative and/or complementary interventions for minimizing BPSD (31), including exercise programs. The literature points out controversial results, while Forbes et al. (8) found no clear evidence of the positive effects of an exercise intervention on BPSD, other authors affirm that exercise interventions can be beneficial to reduce some of the BPSD (32, 33). Besides the controversy, these studies agree that further work is needed to comprehend the potential of exercise as non-pharmacological therapy to manage BPSD (32). Evidence suggests that exercise may affect various BPSD in different ways (33). Indeed, the effects of exercise seem to be more beneficial on depressed mood, agitation and reduce "wandering" (33). The results from our study seem to be in line with this evidence, generally EG maintains their BPSD scores similarly to the scores reported on the baseline, while the CG worsen depression, apathy, aberrant motor behavior scores (Fig. 3). Importantly, in our study, the caregiver’s perceived a decreased of the total BPSD in the EG after the 6 months’ exercise intervention.

From our knowledge, no studies have addressed the caregiver’s perspective about the impact of exercise intervention in their BPSD distress. In our study, formal caregiver´s distress triggered by apathy, disinhibition and aberrant motor behavior increased in CG while after 6 months of an exercise intervention no alterations were seen regarding these distress causes in EG (Fig. 4). Evidence suggests that disruptive behaviors and low ADL levels among residents with dementia expose formal caregivers to demanding physical and emotional distress (7), leading to poorer QoL (34, 35). Thus, our results could suggest that exercise programs in institutionalized SwD may be useful as a strategy of BPSD- distress management. Strategies to alleviate the burden felt by formal caregivers leads to higher job satisfaction, increase their QoL and consequently improved staff attitudes and caring behaviors and, over time, resident well-being (36).

Functional status is related to institutionalization (37). Among other reasons, in most cases, older adults move to a nursing home when their functional capacity is diminish affecting their independency to perform ADL (38). In institutional settings, assistance in ADL for older adults living are often delivered in a standardized and depersonalized way that undermines independence (39). Particularly in SwD, fewer opportunities to perform ADL and the lack of physical activity opportunities exacerbates the functional decline in the institutional settings (40). Corroborating this evidence, the present study showed a progressive decline in the total functional capacity score and some of their domains including, transferring, feeding, and incontinence outcomes in the group without exercise intervention. Altering this tendency, the EG was capable of preserving their total functional capacity after the 6 months of exercise intervention (Fig. 5). Other studies have verified that exercise programs implemented in institutions can induce positive outcomes concerning the functional capacity of SwD (8, 41, 42)

It has been suggested that in institutional settings the participation in a wide range of activities improves the QoL of SwD (43). fact, activity engagement may contribute to the pleasure and enjoyment, the sense of connection and belonging and retain a sense of autonomy and personal identity (44). Importantly, caregivers also consider aspects such as social relationships, physical movement, attachment and affect, control over life, and contributing to the community as important for SwD QoL (45). A 3 months aerobic exercise randomize control trial (46) and 16 weeks multi center exercise program (4), both for older adults with Alzheimer´s Disease shown some evidence that exercise program can improve QoL. However, we did not found alterations on QoL following 6 months of EG or CG from the perspective of the caregivers (Fig. 5).

BPSD are commonly associated with a reduction in the QoL for the older adult with dementia (47) and increase of caregiver stress (43, 47). Therefore, we would expect an alteration of QoL in CG and possible preservation in EG. Although in the majority of the studies regarding, functional capacity and QoL evaluation of institutionalized SwD have been partially or fully reported by the formal caregivers, the fact that this is the perspective of the caregiver has not been highlighted. In fact, it seems relevant to empathize their perception since dementia care can contribute (due to disruptive behavior and the limited capacity of performing ADL) for the burden of formal caregivers (43). Additionally, from the author's knowledge, no previous studies had explored the effects of 6 months’ exercise intervention on BPSD score and caregivers’ distress in institutional settings. Higher levels of stress and poorer levels of well-being of formal caregiver’s impact negatively on the quality of care they provide and consequently have a negative effect on institutionalized SwD well-being (48). Therefore, interventions for residents with dementia perceived as positive by the formal caregiver may increase the well-being both of themselves and, by extension, those they care for. The results of our study showed that formal caregivers perceived some of the benefits of the engagement to exercise program in institutionalized SwD.

The main limitation of this study was the small sample size and the lack of randomization for group assignment. Recruiting voluntary people diagnosed with dementia willing to commit with a 6-month´ intervention was challenging and several institutions were therefore involved.

Conclusions

In sum, this study confirms that 6 months of exercise program can promote positive caregivers' perception concerning its importance on functional capacity and BPSD in institutionalized older adults with mild to moderate dementia. Moreover, this study suggests that an exercise intervention in institutionalized SwD may be useful as a strategy of BPSD- distress management, alleviating the burden felt by formal caregivers. Although no QoL improvement was observed, these results indicate that formal caregivers perceived the engagement in the exercise program in institutionalized SwD as positive. This can be relevant for better well-being of both SwD and formal caregivers in institutional settings.

Abbreviations

Declarations

Ethical approval and consent to participate: This study was approved by the Ethical Commission of the Faculty of Sports of the University of Porto (Ref CEFADE02.2014). Written informed consent to participate was obtained from all

participants and their families/legal representative.

Consent for publication: Not applicable

Availability of data and materials: The data that support the findings of this study

are available from the corresponding author upon reasonable request.

Competing interests: Not applicable

Funding: This study is part of the larger project Body and Brain (POCI-01-0145-FEDER-031808) funded by the Portuguese Foundation of Science and Technology (FCT). FCT also supports Research Center in Physical Activity, Health and Leisure, Faculty of Sport of University of Porto (CIAFEL) (UID/DTP/00617/2020). The funder had no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.

Authors Contributions: AS planned and performed the evaluations, analyzed

data interpreted results and drafted the manuscript. IMA analyzed data,

interpreted results and edited and revised the manuscript. ASeabra analyzed

data interpreted results and revised the manuscript. JM edited and revised the

manuscript. JC edited and revised the manuscript. All authors have read and approved the manuscript.

Acknowledgements: The authors would like to thank all participants, caregivers, and institutions for participating in this study.

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Tables

^a Student´s t-test or Mann Whitney for continuous variables; Chi-squared or Fisher´s exact.

^a Student´s t-test; * p ≤ 0.05.

^a Student´s t-test; * p ≤ 0.05.