Abstract
The authors found that occupational therapy interventions for people with dementia are acceptable to diverse groups when the therapist works in partnership and provides an intervention that is meaningful and purposeful for the client.
The term dementia describes a group of complex conditions that progressively affect brain function, resulting in changes to thinking and function. The most common form of dementia is Alzheimer’s disease (World Health Organization [WHO], 2023). More than 55 million people globally have dementia; numbers are expected to increase to more than 150 million by 2050 because of the population aging (WHO, 2023). Dementia is a significant international health issue; a leading cause of death, disability, and dependence in older people; and estimated to cost $1.3 trillion annually (WHO, 2023). In Australia, more than 400,000 people have a diagnosis of dementia (Australian Institute of Health and Welfare, 2023).
Functional decline is a core feature of dementia; as symptoms become worse, a person’s ability to carry out everyday activities, such as grocery shopping, is affected until assistance is required for even simple tasks (Burns & Iliffe, 2009). People with dementia may also have changes in mood or behavior, such as apathy or agitation (Burley et al., 2023). Most people with dementia live in the community, and much of the support required is provided by family (Centers for Disease Control and Prevention, 2023). Functional dependence and behavioral changes can decrease the quality of life of people with dementia and families and can contribute to increased caregiver burden (Brodaty et al., 2014). Dementia advocates want interventions to support people with dementia to remain at home (Burley et al., 2023).
Occupational therapists are uniquely positioned to support people with dementia and family caregivers at home. Occupational therapy has a philosophical foundation of using engagement in meaningful activities as a therapeutic tool to support well-being among people with dementia and their families (World Federation of Occupational Therapists [WFOT], 2012). Holistic, client-centered occupational therapy interventions for dementia can address changes in physical, cognitive, and psychosocial abilities by building skills and knowledge among people with dementia and caregivers and by adapting the environment and elements of an activity. However, occupational therapy is a profession founded in Western knowledge and understanding (Castro et al., 2014), and many occupational therapists do not feel confident working with diverse groups (Beagan, 2015). Therefore, it is essential to consider diversity in occupational therapy interventions for dementia.
Strong evidence has been found for several home-based occupational therapy interventions treating dementia in developed countries. Multicomponent, structured, dyadic interventions (working with the person with dementia and a family member) have been shown to be effective in multiple trials; they delay functional decline, reduce behavioral changes, and increase the quality of life of people with dementia and their caregivers (Bennett et al., 2019). Environmental-based interventions have been shown to reduce behavioral changes and falls (Jensen & Padilla, 2017). Multicomponent interventions for caregivers improve skills, confidence, and well-being (Piersol et al., 2017). Occupational therapy practice guidelines for dementia additionally recommend cognitive-focused interventions or exercise combined with other activities such as music to improve cognitive symptoms and reminiscence therapy to improve symptoms of depression (Smallfield et al., 2024).
Globally, people from diverse groups experience health disparity, including higher challenges in accessing postdiagnostic dementia care (Gauthier et al., 2021). The term diversity encompasses people’s cultural, socioeconomical, spiritual, sexual, geographic, and personal realities (Australian Department of Health, 2017). These factors influence understanding of dementia, help-seeking behaviors, and acceptance of psychosocial interventions (Dowrick et al., 2009); we can infer acceptance of occupational therapy is similarly influenced. Diversity also influences how care is enacted (Janevic & Connell, 2001), and understanding each family’s perception of caring is required to deliver relevant interventions (Gitlin et al., 2005).
The aim of this study was to explore factors contributing to the inclusive delivery of occupational therapy interventions for diverse groups of people with dementia from the perspectives of occupational therapists and people with relevant experiences (e.g., ethnic minorities, sexual minorities, and those socially or economically disadvantaged).
Method
In this a qualitative exploratory study, we used semistructured interviews and focus groups. It is reported in accordance with the consolidated criteria for reporting qualitative research guidelines (Tong et al., 2007).
Participants and Recruitment
This study took place in Australia with two groups of participants: 18 occupational therapists (focus groups, n = 10; interviews, n = 8) and 8 community dwelling people with experience of dementia (people with a diagnosis of dementia and their families).
Occupational therapists were recruited via email through professional networks, dementia training mailing lists, and the snowball method. Interview participants had expertise in occupational therapy, dementia, and diversity, as defined in the Australian aged care diversity framework (Australian Department of Health, 2017). Focus group participants were purposively recruited to cover a range of experiences (e.g., occupational therapy, dementia), workplaces (e.g., community health services, private practice), and geographic locations.
People with experience of dementia were recruited via emails from professional networks (e.g., multicultural care organizations). They were purposively sampled to include a mix of diversity groups, gender, age, and relationship to a person with dementia. Translated recruitment flyers were offered to support recruitment of linguistically diverse groups, but only flyers in Chinese were requested. Other language groups did not require translated flyers for recruitment. People were eligible to participate if they had experience of dementia, self-identified as from a diverse group, and had received home-based occupational therapy.
Data Collection
Consent
Participants completed written consent before commencing the interview or focus group. Translated versions were available.
Procedure
Semistructured, qualitative interviews and focus groups were conducted August 2021 to June 2023. All potential participants received a phone call introducing the research. The primary researcher (Sally Day) is an occupational therapist experienced in dementia and research, undertaking a doctorate degree. Interviews were offered in English or in another language. They were conducted face to face (participants’ homes) or via phone or video conference by Day or a bilingual colleague (Fang [Sam] Shen, a health researcher). Interviews were 37 to 65 min in duration. Online focus groups (each 90 min) were conducted by Day and Lee-Fay Low (psychologist and dementia researcher). All the online focus groups and interviews were audio recorded and transcribed verbatim. Field notes were made before, during, and after each focus group and interview. Participants’ feedback of transcripts was incorporated into analysis.
Data Collection Tools
Topic guides exploring experience of occupational therapy, dementia, and influence of diversity were developed to address the research aim (Table 1) by Day in consultation with all the other authors (all doctoral-level researchers, experienced in qualitative research and dementia with professional backgrounds in occupational therapy, nursing, and psychology). Demographic questions (e.g., age, gender, experience of dementia, and diversity) were added at the start of interviews and focus groups. The deidentified transcript of the first interview was reviewed by all authors; feedback to the interviewer was incorporated into subsequent interviews and focus groups.
Topic Guide
Data Analysis
Demographic data were analyzed descriptively to determine frequencies, percentages, means, and standard deviations. Qualitative data were imported to NVivo (Version 14; https://lumivero.com/) and were analyzed with reflexive thematic analysis to identify and explore patterns of meaning (Braun & Clarke, 2022). Initial codes were generated with descriptive and interpretative codes; each transcript was initially open coded by Sally Day and then reviewed by all authors using a reflexive approach, “critically interrogating what we do, how and why we do it and the impacts and influence of this” (Braun & Clarke, 2022, p. 119). Different interpretations of the coded data were discussed to form new understanding rather than seeking consensus (Braun & Clarke, 2022). Field notes supported reflexive analysis. Themes were developed by grouping codes with shared meaning and by identifying which codes were specific to occupational therapists, which codes were specific to people with experience of dementia, and which codes were described by both. The themes were then prioritized on the basis of the research aim. Finally, the themes were refined and named.
Ethical Considerations
This study was reviewed and approved by the by the University of Sydney Human Research Ethics Committee (2021/403) and the Aboriginal Health and Medical Research Council ethics committee (1817/21).
Results
A total of 20 interviews were conducted with 8 occupational therapists (4 were interviewed twice) and 8 family members of people with dementia. Ten occupational therapists attended one of two focus groups. Most participants were female (n = 23), and most family members were from an ethnic minority background (Chinese, Arab, Indian, and Orthodox; n = 6). Table 2 provides participant characteristics. We attempted to recruit people living with dementia from diverse groups who had received occupational therapy but were unable to identify any such participants. Three themes were developed (Table 3). Exemplar quotes are available in Table A.1 in the Supplemental Material (available online with this article at https://research.aota.org/ajot).
Participant Characteristics
Note. LGBTI = lesbian, gay, bisexual, transgender, intersex.
Data collected from 15 participants.
Themes
Theme 1: “I See You, I Hear You, I Understand You”—Knowing the Person at the Center of the Care
All participants described the importance of occupational therapists building relationships with the person with dementia and their family to get to know them and understand their unique needs. This process allowed occupational therapists to actively engage people with dementia and families in the intervention. However, participants differed in their experience of how knowing the person was executed in practice. (To protect confidentiality and privacy, participants’ names are pseudonyms.)
Family members felt that to provide relevant interventions, occupational therapists needed to understand their specific cultural context and to value their meaning of family and community. However, this expectation did not always occur: “trying to explain little intricate things like that to people [occupational therapists], often just goes over their heads too because they don’t understand how culturally important it is or how used to those customs we are” (Laila, daughter of person with dementia). Among occupational therapists, how they came to know the person varied. Some described being mindful of the influence of their own experiences and potential biases: “I check my attitude. I check my privilege at the door” (Jane, occupational therapist). They described the importance of knowing the person (and the family), including their cultural influences, to negotiate their therapeutic agenda. Other therapists discussed catering for diversity at a more superficial level, describing practical strategies such as learning words in their language.
Occupational therapists described using therapeutic techniques, such as active listening and empathy, to create respectful and safe therapeutic relationships. In contrast, families equated therapeutic technique with personal characteristics and believed these traits influenced a therapist’s ability to know the person. Many described their therapist’s kindness and how this compassion instilled confidence: “He’s listening and very patient, and I feel he is caring … I think it’s the most important thing” (Lyn, daughter of person with dementia). Both groups of participants agreed that although therapists were well-intentioned (they were doing what they thought was right), not all therapists prioritized knowing the person in their therapy: OTs [occupational therapists] are really good at the ticking the box bits, but to get to know someone it’s actually the stuff in the background, you know you take that time, you talk to them. It’s all those other skills … It’s all the engagement part that’s the really important part. (Jane, occupational therapist)
Occupational therapists shared how they are required to be inclusive of the person and their family while being sensitive to often complex family dynamics. They were considerate of interventions not being an additional burden to already busy caregivers: When we were putting programs together, we could be very mindful of the people around that person as well as the person—that we weren’t creating more work, more load, more stress. (Katie, occupational therapist)
Family members shared their frustration when the therapist appeared to ignore the person with dementia because of their limited English language or cognition and interacted solely with the family. However, they were similarly frustrated when the therapist focused solely on the person with dementia without considering their social context, including the needs of the family. This complexity was navigated more successfully when the person with dementia and the family were all considered as being at the center of the care. Laila (daughter of person with dementia) described her positive experience: I honestly felt she [the therapist] was very understanding and was listening when we spoke and one of the things I noticed that she did that the other OTs hadn’t done in the past was to say “well, can I sit with him?” Even if it’s just sitting there and observing his body language. You know, I’m translating what he’s saying, but regardless, they’re communicating, and I thought that was really important.
Theme 2: “It’s That Dance You’ve Got to Do With Your Clients”—Collaboration
Both groups of participants described that true collaboration with diverse groups stemmed from establishing a connection, which then empowered families. Participants’ experience of true collaboration varied.
Making a Connection
Both groups of participants described the connection among the occupational therapist, the person with dementia, and the family as the foundation of a collaborative approach with diverse groups. Occupational therapists described building trust through respect and validation of families’ efforts. They tailored their approach on the basis of each family’s needs, including modifying communication or partnering with other stakeholders to support people to feel safe and supported. Challenges to creating a connection occurred at the individual level (such as overcoming the mistrust of health care services by people from diverse groups) and at an organizational level (such as limited time or funding, or competing workplace priorities; e.g., assessment over invention), which compromised therapists’ ability to make a connection: “I think, if you come in and you just jump into that assessment, you can miss the point really, and not build that working relationship that you need” (Lucy, occupational therapist).
Family members had mixed experiences of making a connection with therapists. For those with positive experiences, a combination of time, information, and therapeutic skills was conducive to collaboration. Participants appreciated when therapists took the time to explain the purpose of the intervention. They described therapists’ cultural understanding and respect. Others reflected that collaboration was negatively affected when occupational therapists appeared to have an agenda that did not necessarily align with the priorities of the person with dementia or the family. Families acknowledged that their own responses could also negatively affect building a connection.
Power Influences Genuine Collaboration: Supporting Choice and Control
Some participants from both groups perceived the occupational therapist as the dementia care expert, which negatively affected collaboration. Some therapists described how they worked to get people on board with their recommendations rather than how they tailored an intervention to individual needs. Other participants disagreed that therapists were the experts; family members felt therapists needed to acknowledge that view: “I think it is important for them to humble themselves and just say, ‘do you know how I can help them more?’” (Yael, sister of person with dementia). Occupational therapists agreed that it was important to acknowledge their own limitations. Some shared limitations related to their experience level or a language barrier. However, others were more reflexive: “There’s that risk that without the extra involvement, that unintentionally my own lens is going to impact how I see what’s meaningful and purposeful for that person” (Katie, occupational therapist).
Participants from both groups described the difficulty in creating genuine partnerships with diverse groups because of the asymmetrical distribution of power inherent in occupational therapy interventions at individual, organizational, and societal levels. Family members described the lack of personal control, including long wait times and therapist-driven priorities. Both groups of participants suggested that the control held by organizations affected intervention delivery. Therapists with supportive management or flexible funding arrangements were supported to collaborate with families. However, some organizations restricted intervention delivery (e.g., the type of intervention or number of sessions permitted, or the organization did not appear to value occupational therapy input for people with dementia). Some family members described funders, rather than therapists, dictating the extent of an intervention. Therapists described the impact of power imbalance at a societal level, in particular for Indigenous Australians who have a pervasive mistrust of health services stemming from a history of discrimination and exploitation since colonization.
Both groups of participants reflected on the positive collaboration that stemmed from empowerment of people with dementia and their families. They described families feeling valued when therapists recognized their knowledge of their family member with dementia. Therapists suggested that a power shift occurred when they offered choice and control over how an intervention is delivered. Empowerment was reflected in families’ confident advocacy for their person with dementia and skill building obtained from the intervention. Ultimately, collaboration stemmed from power symmetry: “They want control. But they also want to hand some control to the professionals because they need guidance. They need to know where to go and how to get there” (Elena, occupational therapist).
Theme 3: “Please Come In and Give Them a Shower Chair”—Perception of Occupational Therapy for People With Dementia
For many families, receiving an intervention for dementia was their first exposure to occupational therapy. Their interaction with the therapist and the intervention outcome influenced their perception.
Anticipated Outcomes
Participants expressed diverging views about what occupational therapy offers for people with dementia. Many participants (from both groups) focused on interventions supporting home safety. They described a successful intervention as equipment prescription or home modifications. Family members were frustrated by being recommended items that did not meet their needs or by being able to find more suitable items independently without the occupational therapist. Interventions for dementia were not always valued: “They might pay for a physio, they can see the benefit of a physio or a doctor or an optometrist. But for an OT, they don’t see that value” (Vicky, occupational therapist).
In contrast, people who were involved in a more comprehensive program for dementia described the therapist working with the person with dementia and the family. They described a personalized approach on their unique needs and ultimately an improvement in caregiver skills, knowledge, and confidence: “I think because of what I’ve learned through [OT], my response to Mum actually makes the situation worse or better. I hadn’t realized that” (Noeline, daughter of person with dementia). Therapists emphasized that the therapeutic approach needed to be tailored to the motivations of each family to obtain buy in.
Competence Instills Confidence
Participants from both groups described the confidence felt when a therapist demonstrated competence in occupational therapy, in dementia, and with diverse groups. In contrast, family members expressed their frustrations when they perceived that therapists lacked the clinical experience to meet their needs, provided little direction, or introduced unsuccessful interventions.
Practical considerations to support diverse groups also influenced therapists’ competence: ▪ Training in dementia and diversity required, ▪ Culturally specific resources to support engagement, and ▪ Access to trained interpreters.
Family members were surprised at the variability among occupational therapists they had seen. They wanted therapists to be trained in dementia and diversity, to be accountable, and to have checks in place. Occupational therapists echoed the need for support to develop skills: I think mentoring and modeling, to do visits with a more experienced OT will be very valuable, because you, when you see an assessment, done by someone with lots of experience, you understand, and see things that are not in the books or not in Google. And then you develop your own style. (Elena, occupational therapist)
Therapists working with non-English speaking groups experienced challenges accessing interpreters because of funding or availability. Even when available, their ability to create a therapeutic relationship was hampered by literal rather than meaning-based interpretations.
Both groups described the lack of culturally relevant resources and supports available for diverse groups. They perceived this shortcoming as a barrier to supporting diverse groups with dementia to continue to live at home.
Discussion
The aim of this research was to explore factors contributing to the delivery of acceptable and inclusive occupational therapy interventions for people from diverse groups with experience of dementia. Three themes were developed: (1) knowing the person at the center of the care, (2) collaboration, and (3) perception of occupational therapy for people with dementia.
Occupational therapy defines client-centered care as working with an individual person, families, or communities (WFOT, 2012); yet, in practice, often the individual person is prioritized. Our findings highlight that to support inclusivity for diverse groups, therapists need to ensure interventions meet the needs of people with dementia and their families. For diverse groups experiencing health disparity, this approach offers opportunity for a collaborative, respectful relationship (Restall & Egan, 2021).
Occupational therapists are often trained in cultural competence, focusing on building knowledge. However, this positions people from diverse groups as “other” and fails to acknowledge systemic barriers to culturally inclusive care (Beagan, 2015). Our findings of knowing the person suggest that adopting a reflexive approach of cultural humility with diverse groups would be beneficial. Cultural humility recognizes diversity within and across cultures as well as power imbalances within therapeutic interactions (Agner, 2020). It ensures that therapy goals are focused on people with dementia and their families rather than being influenced by the therapist’s values or beliefs (Sumsion & Smyth, 2000).
Power imbalances are an established barrier to accessing and engaging in services, especially for diverse groups (Khatri & Assefa, 2022). Occupational therapists can shift power symmetry to collaborate with diverse groups by offering choice and control over provision of interventions; cultural humility and collaborative relationships support this shift. However, this method can be challenging to implement without organizational support, such as improvement in health literacy, timely access to interpreters, and review of organizational values (Khatri & Assefa, 2022). To overcome constraints in the delivery of culturally acceptable interventions, organizations must prioritize application of evidence-based community interventions for dementia and provide flexible funding models that support diverse groups (Richards et al., 2024).
Many family members had limited appreciation of what occupational therapy could offer; yet, people who understand interventions are more likely to experience positive outcomes (Mortenson & Dyck, 2006). Many occupational therapists themselves are challenged by poorly defined roles in community dementia care (Richards et al., 2024). Occupational therapists clearly explaining their role in dementia care could improve inclusivity of diverse groups.
Both groups of participants appreciated therapists’ experience in occupational therapy, dementia, and working with diverse groups. Using occupational therapists who are experienced and knowledgeable about dementia supports effective intervention implementation (Voigt-Radloff et al., 2011). In contrast, occupational therapists who lack dementia knowledge and training face challenges (Lanzoni et al., 2023). Occupational therapists new to dementia or to working with diverse groups must build skills and knowledge, including through training, supervision, or mentoring.
Limitations
This study has several limitations. The study was conducted in Australia and may not reflect international experiences. Challenges to recruitment were encountered, such as the stigma around dementia for many communities. In addition, no people living with dementia and no Indigenous Australians were included in the study. The findings may reflect inclusivity from the perspective of people who are already accepting of occupational therapy.
Implications for Occupational Therapy Practice
In this article, we identified challenges to the provision of culturally safe and inclusive occupational therapy for people with dementia from diverse groups. Thus, this article has important implications for occupational therapy practice internationally: ▪ Occupational therapists should apply cultural humility, be aware of their own role in interactions, and acknowledge the diversity within each family and inherent power imbalances. Applying cultural humility builds confidence in families, encourages a collaborative therapeutic relationship, and supports the implementation of safe and acceptable interventions for dementia. ▪ The benefit of occupational therapy in dementia is supported by evidence yet not widely understood by the community. Occupational therapy practice would benefit from increasing awareness regarding its role, thus supporting engagement of people with dementia and families, including people from diverse groups.
Conclusion
The findings of this study suggest that people with dementia from diverse groups and their families have positive experiences of occupational therapy interventions when they understand the purpose, are confident in the therapist’s skills and knowledge, feel that the therapist is tailoring the intervention to their specific needs, and are empowered to collaborate in real partnership. Occupational therapists may require support to provide culturally safe and acceptable interventions. They should apply cultural humility and build their skills and knowledge in dementia and diversity.
Supplemental Material
Supplementary material for Exploring Factors for Inclusive Occupational Therapy for People With Dementia in Australia: A Qualitative Study
Supplementary material, sj-pdf-1-aot-10.5014_ajot.2025.050895.pdf for Exploring Factors for Inclusive Occupational Therapy for People With Dementia in Australia: A Qualitative Study by Sally Day, Kate Laver, Kylie Radford, Yun-Hee Jeon and Lee-Fay Low in The American Journal of Occupational Therapy
Footnotes
Acknowledgments
We acknowledge the insightful contributions of our reference group and our colleague Fang (Sam) Shen, who conducted interviews with the Chinese-speaking community. Sally Day was supported by a Dementia Centre Research Centre PhD Scholarship and the Australian Association of Gerontology RM Gibson grant.
References
Supplementary Material
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