Abstract
Families of persons living with dementia provide varying levels and forms of support to their loved ones and experience changes in familial dynamics, roles, and responsibilities over time. Family-centered care can enable their successful adaptation and participation in meaningful occupations. This scoping review aimed to explore available familycentered interventions for persons living with dementia, with a focus on occupational therapy. Three databases were searched and 31 eligible studies were found. Thirteen family-centered interventions were identified that were mostly multicomponent in nature, of which three involved occupational therapy. These interventions were investigated using a range of study designs and addressed outcomes related to the person with dementia, primary caregiver, and extended social network. With respect to study context, most interventions were developed in the United States and other Western countries with a limited number located in other contexts. The review findings underline the need for developing more family-centered interventions within occupational therapy, particularly for different contexts and cultures, and for translating available interventions to practice.
Introduction
Dementia is a progressive neurocognitive disorder that may create unique challenges for the person living with dementia and their caregivers. Caregivers of persons living with dementia often need to adjust their own daily occupations, roles, and routines. For instance, they relinquish valued interests, experience diminished social networks, and have challenges in managing their own health and wellness needs (Persson & Zingmark, 2006). Due to the progressive nature of this condition, persons living with dementia and their families require varying levels of support over time (Giebel et al., 2015; Huang et al., 2015). In later stages, primary caregivers need to provide higher levels of care, during which their contact with the extended social network (relatives, friends, acquaintances) may reduce (Zwaanswijk et al., 2013).
Families living with a loved one with dementia may experience changes in familial dynamics and roles over time (Clemmensen et al., 2019; Garwick et al., 1994) and familial roles and responsibilities are often redefined. For instance, spouse caregivers take on their partners responsibilities, and child caregivers assume supportive roles (Esandi et al., 2018). Families are required to balance care for their relative with other family responsibilities (e.g., caregivers juggle caring for their parent with dementia and their own children) (Esandi et al., 2018).
Previous studies have identified that family dynamics and social support can play a key role in facilitating successful adaptation by mediating or moderating outcomes in caregivers of persons living with dementia. For instance, caregivers with greater family cohesion and social support experience increased resilience and lower levels of burden and depression (Torossian & Ruffins, 1999; Wilks & Croom, 2008), resulting in positive and meaningful caregiving experiences. There is a growing body of literature focusing on family-centered dementia care, assessing how these interventions can potentially capitalize on these connections and possibly contribute to positive outcomes for the family.
Family-centered care builds on the concept of person-centered care by not only considering the person’s needs, goals, values, and preferences, but also their family situation; it advocates for respect towards and meaningful involvement of the family (Feinberg, 2014). However, the term ‘family’ is often used in the dementia caregiving literature to describe a single primary caregiver rather than the broader family system (Esandi et al., 2018; Keady & Harris, 2009). While there is a growing body of literature that focuses on the primary caregiver and the person with dementia (commonly referred to as the dyad) (Van’t Leven et al., 2013), there is a need to understand the experience of the whole family (including extended family members and other members of their social network). This can potentially contribute to identifying holistic solutions and promote quality of life of the family unit (Esandi et al., 2018).
Occupational therapists work closely with people with dementia and their families and are well-positioned to provide family-centered care. Occupational therapists facilitate their clients’ participation in meaningful occupations or the “everyday activities that people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life” (American Occupational Therapy Association, 2020) Family-centered care is closely aligned with occupational therapy models of practice that recognize the influence of the cultural and social environment, including the groups that we are part of and our roles within those groups (Kielhofner & Forsyth, 1997; Townsend & Polatajko, 2007). However, occupational therapy practice remains strongly inclined towards individual occupations and the individual-therapist relationship (Gerlach et al., 2018; Hammell, 2019; Malfitano et al., 2021). Existing reviews on occupational therapy interventions for dementia have broadly discussed multicomponent (Abrahams et al., 2018) and non-pharmacological interventions (Bennet et al., 2019; Piersol et al., 2017; Thinnes & Padilla, 2011) for persons living with dementia and their primary caregivers. However, it is not clear if and how their broader family members are involved. To promote family-centered occupational therapy practice in dementia care, we must first know more about how it is understood in the literature and the currently available interventions. Thus, the aim of this study was to explore the available literature to better understand family-centered dementia care and to identify currently available family-centered occupational therapy interventions.
Methods
A scoping review methodology was chosen as it is considered the method of choice for broad research questions to map and summarize the research evidence and clarify definitions or conceptual boundaries (Aromataris & Munn, 2020). This review was conducted based on the Joanna Briggs Institute (JBI) Reviewer’s Manual (Aromataris & Munn, 2020) and included the following steps: (1) defining the research question; (2) identifying relevant studies; (3) study selection; (4) extracting and charting the results; (5) collating, summarizing, and reporting.
Step 1: Defining the research question
The authors first conducted preliminary scoping searches to identify available family-centered intervention programs, within and outside the scope of occupational therapy. As the preliminary search drew a very small number of papers, the research question was expanded and reframed as: What family-centered interventions are available for people living with dementia globally? We also addressed the following sub-questions: 1. How is family-centered care for dementia conceptualized or defined in the literature? 2. What are the components of the available family-centered interventions? Do they involve occupational therapists or address occupational therapy-related areas? 3. What study designs have been used? 4. What outcomes have been addressed? 5. What feedback (if any) have persons living with dementia, service providers, family members and/or other stakeholders provided about these interventions? 6. What contexts have these interventions been developed for?
Step 2: Identifying relevant studies
Articles were selected based on the following inclusion criteria: 1. Participants: Studies focusing on community-dwelling persons living with dementia (any type and stage of dementia) and their family. The term ‘community-dwelling’ in this context refers to persons with dementia living in non-institutionalized settings like their own homes. 2. Concept: Studies from all disciplines discussing ‘family-centered interventions’ operationally defined as ‘any intervention focusing on the person living with dementia and their families, and not exclusively on the primary caregiver or the dyad (referring to the person living with dementia and their primary caregiver only). Families could include members of the extended family or their broader social network including friends, neighbors or others. 3. Context: Interventions from all geographical locations and cultural contexts delivered in a community setting (referring to any non-institutionalized setting like participants’ homes or outpatient settings). 4. Types of evidence sources: Full-text primary research articles including quantitative or mixed-methods designs (including randomized and non-randomized controlled trials, interventional studies without controls, pre-post studies, pilot studies, single-case experimental studies and case studies) and qualitative studies on developing or evaluating the effects of an intervention.
The following studies were excluded: (i) focused only on the person living with dementia or on the dyad without considering the family/social system; (ii) focused on professional caregivers; (iii) were situated in institutionalized settings like long-term care; (iv) were non-interventional (e.g., case-control, cross-sectional, cohort studies) or (v) were theoretical papers, editorials, clinical practice guidelines and review articles.
Step 3: Study selection
Key articles identified during preliminary searches were reviewed to develop a list of keywords and index terms, which was then refined according to the research question. A final list of keywords and index terms was created and used to conduct a detailed search on three databases: MEDLINE, CINAHL, and PsycINFO (See Appendix for search details). The search was restricted to papers published in English from 2000 onwards. This was established based on trends noted in two recent systematic reviews where all included studies were published after the year 2000 (Bennet et al., 2019; Raj et al., 2021). The reference lists of included papers were also searched. Duplicates were removed using EndNote 20 and the papers were imported into Rayyan (Ouzzani et al., 2016) for screening. A three-stage selection process was used: 1. Pilot screening: Two members of the research team conducted a pilot screening of a random sample of 25 titles and abstracts. Discrepancies were resolved through discussion with the whole research team and a second round of pilot screening of 25 records was conducted to further establish agreement. 2. Title and abstract screening: Both members independently screened the titles and abstracts of all identified papers and resolved disagreements through discussions with the whole research team. 3. Full-text screening: Both members then completed independent full-text screening of the selected papers and resolved disagreements through discussions with the whole research team.
Step 4: Extracting and charting the results
The research team developed a data charting form and two members of the team piloted it on three articles, following which agreement was achieved on most items and some minor revisions were considered. The full research team met after the pilot to review the extracted data and discuss these minor revisions. The form was revised based on this discussion. Two members then piloted the revised form on two more articles to further establish agreement and then extracted data from the remaining articles.
Step 5: Collating, summarizing, and reporting
Number of studies by study characteristics.
Results
A total of 31 records were included for extraction (16 papers after full-text screening and 15 papers from reference lists). Figure 1 outlines the screening process and number of records retrieved at each stage. Family members who participated in the interventions included spouses, children, sons/daughters-in-law, and nephews. Some studies did not specify the relationship of participating members to the person living with dementia but included at least one family member or friend in addition to the primary caregiver. The studies included participants at different stages of dementia (early, middle, and late); some studies did not specify the stage of dementia (see Table 2). PRISMA Chart. Intervention characteristics.
Conceptualization of family-centered care
Two categories of family-centered interventions were found: (i) interventions that involved at least one member of the extended family/friends as active participants (Mittelman et al., 2004a; Mittleman et al., 2004b; Roth et al., 2005; Mittelman et al., 2006; Drentea et al., 2006; Mittleman et al., 2008; Vernooji-Dassen et al., 2010; Mittelman et al., 2007; Mittelman & Bartels, 2014; Fauth et al., 2019; Gaugler et al., 2013; Gaugler et al., 2015; Gaugler et al., 2016; Sperling et al., 2020; Joling et al., 2012a; Joling et al., 2012b; Guerra et al., 2012a; Guerra et al., 2012b; Guerra et al., 2012c; Robinson et al., 2018; Mitrani and Czaja, 2000; Eisdorfer et al., 2003; Hepburn et al., 2001; Ostwald et al., 2003; Górska et al., 2016; Ghatak, 2011; Rogerson, 2006) and (ii) interventions that did not directly involve the extended family/friends, but addressed issues related to the broader social network (Chien & Lee, 2008, 2010; Wang & Chien, 2011). Some interventions involved the person living with dementia as a participant with their family (Chien & Lee, 2008, 2010; Ghatak, 2011; Górska et al., 2016; Guerra et al., 2012a, 2012b, 2012c; Hepburn et al., 2001; Ostwald et al., 2003; Rogerson, 2006; Wang & Chien, 2011). Various terms were used to describe these interventions such as ‘family counseling’, ‘family therapy’, ‘family meetings’, ‘family program’, ‘family workshop’, and ‘family group conferencing’.
Intervention components and occupational therapy involvement
Only four papers clearly identified occupational therapy involvement in developing or delivering the intervention (Górska et al., 2016; Guerra et al., 2012b; Hepburn et al., 2001; Ostwald et al., 2003). One intervention specifically mentioned using an occupational therapy approach (i.e., Allen’s Cognitive Levels) to assess the person living with dementia and educate family members about matching activities to the individual’s cognitive abilities (Ostwald et al., 2003). Components like cognitive stimulation (Guerra et al., 2012b), meaningful occupation (Guerra et al., 2012b) and activity groups (Ostwald et al., 2003) were mostly provided to the person with dementia alone while family members engaged in other components like psychoeducational support groups (Guerra et al., 2012b) and workshops (Hepburn et al., 2001; Ostwald et al., 2003). One multidisciplinary intervention involving occupational therapy included family group meetings where the person living with dementia and other family members and/or significant others were present together (Górska et al., 2016). Other papers either involved multidisciplinary teams or did not specify if occupational therapists were involved, but often included components that fall within the scope of occupational therapy (e.g., self-care training, skills training, and caregiver education) (Chien & Lee, 2008, 2010; Robinson et al., 2018).
All interventions included in this review included multiple components (at least two or more). The intervention components discussed have been categorized into seven groups and described below:
Counseling (individual and family/group)
Counseling was offered in the New York University Caregiver Intervention and its adapted versions. A needs assessment and in-person counseling sessions (individual sessions followed by family sessions) were conducted to address identified needs. The number of sessions varied across interventions (see Table 2). Ad-hoc telephone counseling was offered after the final session according to the caregiver’s demand. Counseling sessions often targeted different components like improving communication within the family; building social networks and mobilizing existing networks for support; education about dementia; identifying and using community resources; training in problem-solving, coping skills, emotion management; and strategies to manage challenging behaviours (Mittelman et al., 2004a; Mittelman et al., 2004b; Roth et al., 2005; Mittelman et al., 2006; Drentea et al., 2006; Mittelman et al., 2008; Vernooji-Dassen et al., 2010; Mittelman et al., 2007; Mittelman & Bartels, 2014; Fauth et al., 2019; Gaugler et al., 2013; Gaugler et al., 2015; Gaugler et al., 2016; Sperling et al., 2020; Joling et al., 2012a; Joling et al., 2012b).
Support groups
Support group participation was usually offered in the New York Intervention and some of its adapted versions after completion of the in-person counseling sessions and along with ad-hoc telephone counseling. The aim was to provide continued emotional support, education, and build an extended social network (Mittelman et al., 2004a; Mittleman et al., 2004b; Roth et al., 2005; Mittelman et al., 2006; Drentea et al., 2006; Mittleman et al., 2008; Vernooji-Dassen et al., 2010; Mittelman et al., 2007; Mittelman & Bartels, 2014; Fauth et al., 2019; Gaugler et al., 2013; Gaugler et al., 2015; Gaugler et al., 2016; Sperling et al., 2020).
Increasing families’ awareness about and access to support services and resources
This component involved sharing information about and providing access to community resources and groups, health services, and healthcare resources (e.g., respite care, support groups, financial or medical specialists) (Chien & Lee, 2008, 2010; Ghatak, 2011; Guerra et al., 2012a, 2012b, 2012c; Robinson et al., 2018; Wang & Chien, 2011).
Improving positive communication within the family
This component included understanding family interactions, increasing supportive interactions and reducing maladaptive ones (Eisdorfer et al., 2003; Mitrani & Czaja, 2000), and developing interpersonal relationships between family members and the person with dementia (Chien & Lee, 2008, 2010; Wang & Chien, 2011).
Education
Education about dementia was provided in different forms – as multifamily discussion groups (Guerra et al., 2012a, 2012b, 2012c), as individualized education using a standardized module updated as the disease progressed (Robinson et al., 2018), using a mix of classroom instruction, exercises and assignments (Hepburn et al., 2001; Ostwald et al., 2003), using a jargon-free booklet (Rogerson, 2006) and via in-person sessions with dyads (Chien & Lee, 2008, 2010; Wang & Chien, 2011). Education was also given about other topics such as building caregiver support, improving communication within the family and to share information about accessing local resources (Robinson et al., 2018).
Self-care and skills training for the family
This component included training family members to manage their own self-care needs and develop skills to care for the person with dementia. Skills ranged from problem-solving, stress management, assertive communication, emotion management, conflict management, home care and finance skills, to managing responsive behaviours (Chien & Lee, 2008, 2010; Ghatak, 2011; Guerra et al., 2012a, 2012b, 2012c; Hepburn et al., 2001; Ostwald et al., 2003; Robinson et al., 2018; Rogerson, 2006; Wang & Chien, 2011).
Intervention components involving the person with dementia
Some interventions included components that involved or specifically focused on the person with dementia, such as cognitive stimulation and reality orientation (Guerra et al., 2012a, 2012b, 2012c), activity groups (Ostwald et al., 2003), family group meetings along with the person with dementia (Gorska et al., 2016) and physician consultations, assessment of the person with dementia’s functioning in daily activities and home safety (Ghatak, 2011).
Study designs
The New York University Caregiver Intervention was the most widely researched intervention, investigated in the United States of America, United Kingdom, and Australia through large-scale randomized controlled trials (RCTs) (Mittelman et al., 2004a; Mittleman et al., 2004b; Roth et al., 2005; Mittelman et al., 2006; Drentea et al., 2006; Mittleman et al., 2007; Mittelman et al., 2008), quasi-experimental studies (Fauth et al., 2019; Mittelman & Bartels, 2014) and one qualitative study (Vernooji-Dassen et al., 2010). The New York University Caregiver Intervention-Adult Child (Gaugler et al., 2013, 2015, 2016), Family Meetings Intervention (Joling et al., 2012a, 2012b), and Dementia Family Care Programme/Family Mutual Support Programme in Dementia Care intervention (Chien & Lee, 2008, 2010; Wang & Chien, 2011) were all studied through RCTs. For the Structural Ecosystems Therapy intervention, one RCT (Eisdorfer et al., 2003) and one paper reporting case examples from the trial (Mitrani Czaja, 2000) could be found. Similarly, for the Minnesota Family workshop intervention, one RCT (Hepburn et al., 2001) and one paper describing the intervention in detail (Ostwald et al., 2003) were located. All other interventions were studied through quasi-experimental designs (Robinson et al., 2018; Sperling et al., 2020), case studies (Rogerson, 2006), qualitative designs (Górska et al., 2016; Guerra et al., 2012a, 2012b, 2012c; Parveen et al., 2017) or designs that were not clearly identifiable (Ghatak, 2011).
Outcomes
The outcomes targeted in the included studies largely focused on the primary caregiver e.g., depressive symptoms, stress, upset/burden, health, and quality of life. Some outcomes also focused on the primary caregiver’s social network e.g., measures of the caregiver’s social support, family conflict and their utilization of support services. Outcomes related to the person with dementia included global functioning/dementia severity, physical health, cognitive ability, activities of daily living performance and institutionalization rates/time to nursing home placement.
Stakeholder feedback
Feedback about the interventions was collected in some studies either through satisfaction surveys (Ghatak, 2011; Sperling et al., 2020) or through separate qualitative studies (Górska et al., 2016; Guerra et al., 2012b, 2012c; Parveen et al., 2017; Vernooji-Dassen et al., 2010). For two interventions, we could not find any studies describing the intervention, but only qualitative studies to collect feedback (Górska et al., 2016; Parveen et al., 2017). Feedback was collected from different stakeholders including health professionals and volunteers delivering the program (Górska et al., 2016; Guerra et al., 2012b; Vernooji-Dassen et al., 2010), and families participating in the program (Ghatak, 2011; Górska et al., 2016; Guerra et al., 2012a, 2012b, 2012c; Parveen et al., 2017).
Context
The highest number of studies were situated in the United States and some interventions like the New York University Caregiver Intervention were adapted for other countries like the Netherlands. Four interventions were designed for and studied on specific ethnic groups: White and Cuban American caregivers living in the United States (Eisdorfer et al., 2003) and Chinese caregivers living in Hong Kong (Chien & Lee, 2008, 2010; Wang & Chien, 2011). Two studies reportedly considered the impact of culture and used culturally sensitive strategies (Chien & Lee, 2008, 2010).
Availability of the interventions for clinical use
A published training manual with guidelines for clinicians wishing to use the intervention could only be located for the New York University Caregiver Intervention (Mittelman et al., 2010). No other papers indicated the availability of training manuals/guidelines, and none could be found for any of the other interventions through Internet searches.
Discussion
This review aimed to identify and understand more about the available family-centered interventions for dementia. We found 13 family-centered interventions, of which three clearly indicated occupational therapy involvement (ProFamilies-Dementia, Minnesota Family Workshop and Family Group Conferencing). Within these studies, we identified seven main intervention components that were addressed. These interventions were investigated using different study designs and addressed outcomes related to the person with dementia, primary caregiver, and extended social network. In this section, we will discuss some of our reflections relating to the key findings.
Towards consistent use of terminology
The papers included in this review described family-centered interventions in different ways using multiple terminologies. Some excluded papers described family-centred interventions as focusing on the person with dementia-primary caregiver dyad, occasionally leading to confusion about what authors are referring to. These variations can create challenges in clearly identifying and categorizing the different types of dementia care interventions. The lack of a clear conceptualization of family-centered care for dementia as well as the absence of a clear framework about how family-centered care may be unique to this population has previously been noted (Hao & Ruggiano, 2020). Providing clear descriptions of interventions that directly involve or address issues related to the broader family system could ensure clarity. Specifically, this could help distinguish between dyadic and family-centered interventions. While these two categories of interventions likely overlap in terms of the components addressed, they are essentially different in terms of the breadth of issues addressed and participants involved. Consistent and clear descriptions of what type of interventions is being referred to can help clarify this distinction. Based on our findings, it seems that the term ‘family-centered interventions’ in dementia care would be most appropriate to refer to ‘any intervention that involves at least one member of the extended family/friends as active participants in addition to the person with dementia and primary caregiver, and/or addresses issues related to the broader family/social network’.
The potential role of family-centered occupational therapy interventions
The occupational therapy interventions in this review included components like cognitive stimulation and participation in meaningful occupations for the person living with dementia, or on family-related components like support group participation and educational workshops. These components were mostly addressed in parallel, and we could not identify many opportunities for shared occupational participation. Persons living with dementia have reported that engagement in meaningful occupations with others in their social network (or co-occupations) can create a sense of connectedness and companionship, build shared identity, and improve their relationships and quality of life (Han et al., 2016). Family-centered occupational therapy interventions can address this aspect by maximizing the family’s collective engagement in meaningful occupations. Occupational therapists can train the family in compensatory strategies and activity modifications to enable the person living with dementia to participate with the family in shared occupations, routines, and rituals (Schaber et al., 2016). They can also facilitate collaborative decision-making and educate families about reasonable expectations from the person living with dementia while participating in meaningful occupations (Schaber et al., 2016). More occupational therapist-led family-centered interventions in dementia care or occupational therapist involvement in intervention design can ensure that these aspects are addressed.
Impact of family-centered interventions
The outcomes measured in the included interventions mostly focused on the negative consequences of caregiving (e.g., depressive symptoms, burden) along with some positive outcomes (e.g., health; quality of life; satisfaction with social support). There is growing evidence that suggests that families caring for persons living with dementia can have both negative and positive experiences (Cheng et al., 2014; Yu et al., 2017). Positive aspects of caregiving can include other factors like relationship quality, family cohesion, and self-efficacy (Yu et al., 2017). Family-centered interventions can also target and measure these aspects using standardized instruments (e.g., Positive Aspects of Caregiving Scale, Caregiving Uplifts Scale, Caregiving Competence Scale, Revised Scale for Caregiving Efficacy) or qualitative methods like unstructured or semi-structured interviews (Yu et al., 2017).
Translating interventions to practice
Many of the interventions were extensively researched using more rigorous designs like RCTs and the study details were thoroughly reported. As a quality appraisal was beyond the scope of this paper, we are unable to comment on the strength of the available evidence; a future systematic review can contribute to a better understanding of this aspect.
Some included studies used less rigorous designs like quasi-experimental designs and case studies. Although traditionally placed lower in the hierarchy of evidence, these designs are gaining more recognitionas they could potentially overcome some of the limitations associated with RCTs within rehabilitation research, such as concerns related to their external validity and transferability to different populations and contexts (Cook & Thigpen, 2019). Some of these studies had key information missing such as the name of the study design (Ghatak, 2011; Guerra et al., 2012a, 2012b; Parveen et al., 2017; Sperling et al., 2020) and outcome measures used (Ghatak, 2011; Górska et al., 2016). More robust application of these designs to further investigate the effectiveness of these interventions as well as clear, transparent reporting of key information could contribute to a better understanding of their potential for use in clinical settings.
However, apart from the New York University Caregiver Intervention, we were unable to locate training manuals/guidelines for clinicians intending to use these interventions in their practice. It is possible that these manuals exist but are not easily accessible, potentially impacting the translation of these interventions to practice. These findings highlight the need for knowledge translation strategies to improve availability of these interventions to service providers and encourage their application. Some strategies have been used for translating evidence-based dementia care interventions into practice. For example, Gitlin et al., (2015) discuss tailoring and testing interventions to derive better fit with service environments; adapting treatment manuals for use by practice sites; and publishing descriptions of translational efforts of evidence-based interventions). These strategies can be considered in future research focusing on translating some of these interventions into practice settings.
Developing contextually relevant interventions
Almost all the interventions were developed and implemented in countries typically referred to as Western/Northern countries. Only a few studies were situated in a global South or Eastern context (Hammell, 2019). This finding ties in with available literature that has highlighted disparities in dementia research across the globe (Sexton et al., 2021) and supports the need for more research situated in these less explored contexts. Diverse conceptualizations of family and familial roles exist across contexts and cultures. For instance, Hammell (2019) notes that in Western/Northern cultures, independence and individualism are highly valued while Eastern, African, and Indigenous cultures embrace collectivism, interconnectedness, interdependence, social relationships, and mutual obligation.. These underlying values likely influence familial traditions and obligations with respect to caregiving as well. For instance, a comparison of caregivers of older adults with dementia in India, Taiwan and the US revealed some key differences; caregivers in India and Taiwan valued familism, felt obliged to care for their parents, and lived in extended families or received help from extended family members, while caregivers in the US valued individualism and independent living and lived in nuclear families (Tomita et al., 2010). However, irrespective of these differences, caregivers in all three countries perceived family members and friends to be the most helpful source of support (Tomita et al., 2010). Culturally diverse families may even experience an intermingling of these values and experience caregiving in unique ways. This highlights the need to further explore the influence of culture on family values and roles, specifically with respect to dementia caregiving. This can serve as a first step to adapting existing evidence-based family-centered interventions for less explored contexts or designing new ones that are culturally relevant.
It is also important to be mindful of situations in which family-centered interventions might be challenging to implement, for instance, with persons living with dementia and/or primary caregivers who have limited or no available social support. These interventions can potentially be adapted for such clients; for example, they could focus on building the person living with dementia and primary caregiver’s social network and creating new social connections. Strategies such as support group participation to build a new extended social network (Mittelman et al., 2004a) and facilitating connections to community groups and services (Chien & Lee, 2008, 2010; Ghatak, 2011; Ostwald et al., 2003) can be useful.
The review findings also need to be considered in light of some limitations. Although we used a rigorous search strategy, screening, and extraction process, it is possible that some studies may have been missed. In line with scoping review methodology and considering our research questions, a quality appraisal was not conducted. Future systematic reviews can help determine the quality and effectiveness of family-centered interventions.
Lastly, we have used the term ‘dementia’ throughout the paper to be consistent with the terminology used in the reviewed studies; however, we acknowledge that the term can be stigmatizing and might not be appropriate in all cultures.
Conclusion
This paper outlines the key characteristics of currently available family-centered interventions and highlights areas for future research. First, there is a need to develop more family-centered interventions within occupational therapy that can facilitate collective family participation in meaningful occupations. Second, the potential of family-centered interventions in enhancing positive aspects of dementia caregiving can be explored further. Third, efforts to increase accessibility of these interventions to service providers can facilitate their translation to practice. Finally, there is a need to explore how family values and roles with respect to dementia caregiving are shaped by culture, which in turn can inform the adaptation of existing interventions and the design of new interventions for different global contexts and culturally diverse families.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the McGill Global Health Programs through the Manipal McGill Rehabilitation Collaboration Seed Grant 2021.
