Home-Based Occupational Therapy for Adults With Dementia and Their Informal Caregivers: A Systematic Review

Background

Gradual deterioration in performance of meaningful occupations, together with cognitive and behavioral decline, is a key characteristic of dementia (Potkin, 2002). The rate of performance decline in daily occupations can depend on the severity and type of dementia. Comorbidities such as Parkinson’s disease, in conjunction with dementia-related problems, can accelerate the rate of deterioration in performance of meaningful daily occupations (Liepelt-Scarfone et al., 2013), thus decreasing these individuals’ ability to maintain participation and performance in these occupations. Participation and performance in meaningful daily occupations are important in maintaining people’s health and well-being (Law et al., 1998), and progressive decline in participation and performance in people with dementia can lead to reduced health, well-being, and quality of life (Andersen et al., 2004).

Families of people with dementia frequently provide necessary care and support as informal caregivers to maintain care recipients’ independence in daily occupations (WHO & Alzheimer’s Disease International, 2019). Progressive loss of independence in meaningful occupations in people with dementia may affect the health and well-being of the person with dementia as well as that of their informal caregivers (Desai et al., 2004). Decline is accelerated by the severity of dementia and often leads to heightened caregiving demands (Potkin, 2002). Continuous escalation of caregiving demands can diminish informal caregivers’ sense of competence, which is their perceived ability to provide care for the person with dementia (Vernooij-Dassen et al., 1996). A combination of increasing caregiving demands and decreasing perceived ability to provide care can intensify caregiving strain, leading to risk for institutionalization for care recipients (Gaugler et al., 2000).

According to WHO and Alzheimer’s Disease International (2019), most informal caregivers appear to be women. In 2015, the annual global estimation of care provided by these caregivers to persons with dementia was approximately 82 billion hours (Wimo et al., 2018). In the United States, the estimated informal caregiving hours provided for people with dementia in 2018 was 18.5 billion hours. This unpaid care is valued at about $234 billion (Alzheimer's Association, 2019). Given this substantial level of caregiving and associated expenditure, it is important to seek effective intervention strategies to support care recipients and caregivers in their home environments.

People with dementia may be able to reside longer in their familiar environments by optimizing their performance in meaningful daily occupations and improving their informal caregivers’ sense of competence. To achieve these goals, home-based occupational therapy services can support both care recipients and their informal caregivers by providing opportunities for occupational therapy practitioners to observe people with dementia and their informal caregivers in their home environments and to tailor interventions according to their performance needs. Moreover, home-based services can facilitate a partnership approach to achieving meaningful outcomes for these clients (Horowitz, 2002).

Previous systematic reviews concerning the effectiveness of occupational therapy interventions for people with dementia have focused on managing emotional, behavioral, and activity demands in daily occupations (Padilla, 2011a, 2011b; Thinnes & Padilla, 2011). A systematic review by Padilla (2011a) concluded that a combination of compensatory intervention strategies including environmental strategies, sensory strategies (music), caregiving approaches (stress-reducing strategies), and community support services assisted in enhancing performance in activities of daily living (ADLs) for adults with dementia. In another review, Padilla (2011b) examined the effectiveness of modifying activity demands in self-care and leisure activities for people with Alzheimer’s disease and related dementia. Padilla reported that tailored interventions using appropriate compensatory strategies in conjunction with informal caregiver training to apply those tailored programs facilitated performance of daily occupations for people with dementia.

It is yet to be determined whether interventions such as these can be applied in a home-based setting to obtain improved outcomes and enable people to reside in their homes longer. The literature on home-based occupational therapy interventions provided to both people with dementia and their informal caregivers is limited. Therefore, in this systematic review we sought to identify best practice evidence for occupational therapy practitioners to use in implementing home-based occupational therapy for both groups of people.

For this review, daily occupations were categorized as self-care, productivity, or leisure (Creek & Lawson-Porter, 2010). Self-care encompasses personal care tasks, functional mobility, and community management tasks (e.g., transportation). Productivity includes paid or unpaid employment and home management activities (McColl et al., 2005); for people with dementia, deterioration in home management tasks may include difficulties in using a telephone, managing finances, preparing a meal, or driving a car because of reduced complex cognitive processing (Desai et al., 2004). Leisure involves recreational and social activities (Law et al., 1990). The objectives of this systematic review were to explore the available evidence on the effectiveness of home-based occupational therapy to address performance in self-care, productivity, and leisure occupations for people with dementia and the burden of caregiving and sense of competence for their informal caregivers. Two research questions were asked:

Method

The inclusion criteria for studies in this systematic review were as follows: peer-reviewed, quantitative, empirical studies with participants who were community-dwelling adults with dementia and/or their informal caregivers such as family or friends who provided care without being paid for their services (Carretero et al., 2009). Interventions had to be provided or supervised by a qualified occupational therapist in the participants’ home. For randomized controlled trials (RCTs), comparator conditions had to be usual care, wait list, or no intervention. Study outcomes had to be associated with level of performance in self-care, productivity, or leisure occupations for adults with dementia and/or caregiving burden or sense of competence for their informal caregivers. The exclusion criteria eliminated qualitative studies, reports from conference proceedings, non–peer-reviewed publications (e.g., theses, opinions), studies with active control interventions as comparators, and studies in settings other than the home, such as hospitals, rehabilitation centers, clinics, and residential care.

Results

A total of 1,229 articles were identified from the eight databases. After removal of duplicates, 970 titles and abstracts were screened for eligibility (Figure 1). The full text of 122 articles was retrieved and screened independently by two reviewers. Included were 10 non-English articles (German, n = 3; French, n = 6; and Dutch, n = 1), which were translated into English for this review. A two-layered approach was applied to translate these articles, which included initially using Google Translate (Google, Mountain View, CA) to determine eligibility. After using Google Translate, the figures and description in the Results section were unclear for 1 article, so a person fluent in that language was approached to clarify them

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Figure 1.

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.

Twenty-four articles met the inclusion criteria for this review. Two articles reported on follow-up studies from earlier primary RCTs (Gitlin et al., 2005; Gitlin & Rose, 2016) and were combined with their primary studies for data extraction (summarized together in Table A.1). Two other studies were excluded because one was a duplicate of an included study and the other was a study protocol. Thus, a total of 20 studies reported in 22 articles underwent data extraction. These studies investigated the effectiveness of home-based occupational therapy interventions to improve performance in daily activities for adults with dementia and reduce caregiving burden and sense of competence for caregivers.

Twelve studies were Level I RCTs, but 4 of them used comparators that were not usual care, wait list, or no intervention (Callahan et al., 2017; Gitlin et al., 2018; O’Connor et al., 2019; Voigt-Radloff et al., 2011); these 4 studies were considered as Level III pretest–posttest design studies, and data from the intervention groups only were extracted. Six pretest–posttest studies (Level III) and 2 case studies (Level V) were also included. The 20 primary quantitative studies included a total of 4,304 adults with dementia and their informal caregivers.

Discussion

The objectives of this review were to examine the evidence for the effectiveness of home-based occupational therapy to improve performance in daily occupations (ADLs and IADLs) including self-care, productivity, and leisure for adults with dementia and caregiving burden and sense of competence for their informal caregivers. The findings indicate that there is moderate strength of evidence to support the effectiveness of home-based occupational therapy to promote ADL performance and reduce caregiver burden for their informal caregivers.

One key finding of this review is that a multifaceted intervention approach provided jointly for adults with dementia and their informal caregivers can promote performance in daily occupations for adults with dementia. The multifaceted interventions identified in this review mostly included a combination of compensatory strategies adapted to care recipients’ ability and provision of appropriate education and training to informal caregivers. Additionally, occupational therapy practitioners supervised the implementation of caregiving strategies at home to facilitate care recipients’ performance of daily occupations. Two previous reviews (Smits et al., 2007; Thinnes & Padilla, 2011) reported on the benefits of combined interventions in maintaining the mental well-being of informal caregivers and contributing to the ability of people with dementia to stay in their homes. The current review expands on the existing evidence to affirm the importance of using a collaborative partnership approach involving an occupational therapist, a person with dementia, and their informal caregiver to achieve meaningful performance-related outcomes for care recipients.

Using client-centered approaches in intervention planning may aid adults with dementia and their informal caregivers in achieving desired performance-related outcomes. Three studies applied a client-centered approach with care recipients and their informal caregivers to achieve meaningful occupational outcomes (Ávila et al., 2018; Graff et al., 2003, 2006). Although it is not clear whether such models were used in other studies in the review, incorporating a client-centered approach within best practice is supported by the evidence as having the potential to be effective.

Implications for Occupational Therapy Practice

The findings of this systematic review indicate that the following intervention approaches can be recommended for adults with dementia and their informal caregivers:

Implications for Occupational Therapy Research

Future empirical research is needed to investigate the efficacy of multifaceted intervention approaches for specific types of dementia (e.g., vascular dementia) and at particular stages of dementia (e.g., mild, moderate) to offer sound evidence supporting clinical decisions for occupational therapy practitioners. Because of limited evidence concerning productivity and leisure occupations, further investigation in these areas is needed. Future studies could also explore the evidence for using restorative strategies to optimize performance in daily occupations to add to the limited evidence available.

Limitations

This review has some limitations. The included studies used different terms for similar outcomes—for example, ADLs (Callahan et al., 2017; Ciro et al., 2014) versus self-care (Ávila et al., 2018; Dooley & Hinojosa, 2004). Some studies used author-developed outcome measures with unknown external validity and generalizability. Finally, there was variability in the reporting of types and stages of dementia (Gitlin et al., 2001, 2005). A few studies did not report on data, which limited the understanding of the effects of given interventions (Clare et al., 2019; Dooley & Hinojosa, 2004). Most studies examined ADLs, IADLs, or both without describing specific activities, thereby limiting their generalization to clinical practice. None of the studies specifically explored productivity (e.g., home management tasks) or leisure activities for people with dementia. Only two studies reported the use of theoretical models (Graff et al., 2003, 2006). Several studies showed high risk of bias in performance reporting, such as nonreporting of researchers’ concealment, selected reporting, or attrition bias (see Table A.1).

Conclusion

Dementia is a complex health issue affecting both adults with dementia and their informal caregivers. It is essential that interventions are individualized according to the specific occupational performance needs and abilities of care recipients and their informal caregivers. Evidence from this review underscores the importance of using multifaceted intervention approaches provided jointly to promote performance in daily occupations for adults with dementia and improve caregiving capabilities for their informal caregivers. More empirical studies are needed to understand the effectiveness of home-based occupational therapy using remedial strategies and to investigate productivity and leisure activities for this population.