Challenges and opportunities in providing dementia care for Aboriginal and Torres Strait Islander peoples living in rural and remote areas

Abstract

Dementia rates within Australian Aboriginal and Torres Strait Islander populations are estimated to be three to five times higher than non-Indigenous populations. Geographical and cultural barriers demand creative ways of delivering culturally appropriate effective dementia care. Focus groups and interviews with people (N = 73) from three Aboriginal Medical Services and communities explored attitudes toward, and experiences of dementia care and services. A thematic analysis highlighted the juxtaposition between biomedical and culturally appropriate models of dementia care. Services at the cultural interface can be adapted to facilitate appropriate dementia care at a local level allowing people to stay on Country, supported by people within one’s own Community.

Keywords

dementia First Nation peoples Indigenous Australians rural health services telemedicine culturally competent care telehealth bioecological framework

Introduction

Dementia rates within Australian Aboriginal and Torres Strait Islander (herein termed Indigenous) populations are estimated to be three to five times higher than non-Indigenous populations in Australia (Bradley et al., 2020; Li et al., 2014; Lo Giudice et al., 2016). Risk factors associated with dementia, particularly cardiovascular and metabolic conditions, are understood to contribute to the elevated rates reported within Indigenous communities (Bradley et al., 2020; Lo Giudice et al., 2016; Radford et al., 2015). Social disadvantage experienced by Indigenous peoples on account of historical and contemporary realities of colonisation and racism have been detrimental to cultural connections (Baum, 2015; Dudgeon, Wright et al., 2014), economic and educational opportunities (Smith et al., 2010), and social and emotional wellbeing (e.g., trauma; Dudgeon, Milro et al., 2014). These experiences are also associated with a higher risk of dementia (Radford et al., 2015).

Exacerbating these challenges, Indigenous peoples are more likely to face barriers when accessing health care services (Bradley et al., 2020; Wettasinghe et al., 2020), including dementia diagnosis and care (Bradley et al., 2020). Barriers involve marginalisation of Indigenous peoples within the health system, and limited service availability, particularly specialist care, in rural and remote areas of Australia (Australian Institute of Health and Welfare [AIHW], 2019; Gibson et al., 2020). The cultural significance of Place (that is a person’s connection with ancestral land, referred to as Country) should be considered when providing access to culturally safe healthcare. Stark contrasts in infrastructure and cultural traditions can be immense when leaving one’s own Country and travelling across Country, to access services (Shahid et al., 2011).

As such, in local communities, an expanding number of Aboriginal and Torres Strait Islander Community Controlled Health Organisations (herein referred to as Community Controlled Organisations)¹ improve access to quality, culturally appropriate health care (National Aboriginal Community Controlled Health Organisation, 2021). Culturally appropriate health care incorporates acknowledgement of social, political and economic factors that affect health and access to healthcare and reduces the likelihood of discrimination through a focus on dignity, privacy and safety (Williamson & Harrison, 2010). Validation and use of telehealth within Community Controlled Service settings are creating opportunities for improved access to generalist and specialist healthcare (Caffery et al., 2017; Clair et al., 2019; Russell et al., 2021) and mitigate the displacement associated with the need to travel “off-Country” (Shahid et al., 2011). Emergence of such services demands examination of their suitability for First Nations' populations. Social Emotional Wellbeing models are “central to the holistic view of health held by Aboriginal and Torres Strait Islander people” (p. 3, Marmor & Harley, 2018). Social Emotional Wellbeing is defined as a multidimensional concept of health that incorporates health and wellbeing domains including connection to Country, culture, spirituality, ancestry and community (Gee et al., 2014). Indeed, the Aboriginal Health Council of Western Australia has outlined ways to integrate Social Emotional Wellbeing models into health services In contrast, the biomedical model that dominates Australian health care, is essentially individualistic and assumes a dichotomy between body and mind (Baum, 2015). Social Emotional Wellbeing models of care align with Indigenous ways of being, knowing and doing (Gupta et al., 2020). Indigenous ways of being, knowing and doing are processes that are contextual (e.g. social, political, historical, spatial) and recognise Indigenous worldviews and privilege Indigenous voices and experiences (Martin & Mirraboopa, 2003; Zubrzycki et al., 2017).

Non-biomedical approaches to dementia care centred within culturally appropriate and community-based (Cox et al., 2019) models of health are needed for quality dementia care with Indigenous peoples (Flicker & Lo Giudice, 2015). The insights and dementia care priorities of Indigenous peoples living with dementia must be heard and recognised (Garvey et al., 2011; Radford et al., 2014; Smith et al., 2011). The goal of future health services should include culturally appropriate dementia care that recognises the impact of social determinants (Flicker & Lo Giudice, 2015) and benefits, especially for those experiencing dementia, of staying “on Country”. Telehealth is an acceptable modality for Indigenous populations (Caffery et al., 2018).

Through in-depth interviews and focus groups, the original aim of this research was to gain insight into the perspectives and experiences of Aboriginal Health Workers and Community members who used a telehealth model of dementia care. However, consistent with the inductive nature of qualitative research, the findings that transpired were more centred on the broader conversation of culturally appropriate dementia healthcare, of which telehealth is but one part. This paper focusses on the contrast between existing dementia care services and Indigenous perspectives of what is needed to care for community members with dementia, especially those living in regional and rural areas.

Methods

Human research ethics approval was obtained by the relevant committees (HREC/18/QTDD/7; 20180000014/HREC/17/QCH/127-1188). Long-term relationships between the university researchers and the Aboriginal health service leaders supported the implementation and evaluation of the telehealth service. Interviews and focus groups were undertaken with Aboriginal Medical Service staff, community leaders and community members to gain their perspectives and experiences of a trial of telehealth to support dementia diagnosis and care. This data collection occurred between May 2018 and April 2019 prior to implementation of the telehealth service and ninemonths post-implementation. Recruitment and decisions regarding the format (focus group or interview) were guided by Aboriginal Health Workers or service managers. This approach was a respectful way to acknowledge preferences for engagement and contribution to research. Community leaders and members were all interviewed individually.

Sample and Recruitment

Aboriginal Medical Service staff, especially Aboriginal Health Workers, were recruited if they were to be involved (pre-implementation) or were involved (post-implementation) with the new telehealth service. Recruitment of community leaders and members was undertaken through convenience sampling. Additional purposive sampling targetted participants with experience of family members with dementia.

Overall, eight focus groups and 25 interviews were completed, with 73 participants split relatively evenly across three sites (Site 1 = 22; Site 2 = 20; Site 3 = 31). The three sites were located in regional and rural Queensland, Australia. Sites 1 and 3 were Aboriginal Controlled Community services, with an 8- to 8.5-hour drive from the nearest tertiary hospital and specialist geriatric services. Site 2 was an Aboriginal Medical Service within a small state-run hospital, located within a 3.5-hour drive from the nearest specialist geriatric services. Focus groups each contained between two and seven participants. The geriatrician delivering the service from the Brisbane hub site, a tertiary hospital, also participated in an interview at baseline. Further participant characteristics are detailed in Table 1.

Table 1.

Population characteristics.

	Site 1	Site 2	Site 3	All sites
Population of area	4295	1331	2660
Estimated Aboriginal and/or Torres Strait Islander population n (%)	635 (15%)	1280 (96%)	724 (27%)
Total n (%)	22	20	31	73 (100%)

Data Collection

Several authors (AS, LC, HH) collected data. Interviews were one-on-one and focus groups had two co-facilitators. The semi-structured format promoted discussion of experiences with dementia and dementia care, experiences with telehealth and perspectives on access to appropriate health care. The pre-implementation data collection examined people’s knowledge of current local dementia services, as well as community knowledge, beliefs and attitudes to dementia and telehealth. The post-implementation data collection aimed to gain insight into perceptions of the new service. However, the interview and focus group questions were sufficiently open ended to the extent that the discussion moved away from telehealth to a broader critique of how the health system overall supports dementia in a culturally relevant way.

Data Analysis

The interviews and focus groups were recorded (by digital recorder) and then transcribed verbatim, checked for accuracy, and de-identified. To facilitate familiarisation, Author LG read through all transcripts and listened to the recordings, before conducting a thematic analysis, as described by Braun and Clarke (2013). Author HH, who was also involved in data collection, conducted thematic analysis on three transcripts. Analysis of sub-themes and corresponding data generated higher-order themes. Regular peer-debriefing to increase the trustworthiness of the findings (Lincoln & Guba, 1986), occurred between Authors LG, AS, LC and HH. The peer-debriefing process included numerous discussions and frequent referral back to the sub-themes and raw data to check and generate higher-order themes. During these peer-debriefing meetings, it was recognised that two distinct cultural narratives of dementia care were emerging: Social Emotional Wellbeing aspects of care and mainstream biomedical aspects of care. Further discussion highlighted the need to examine the cultural interface between these two models and the appropriateness of framing the themes within Bronfenbrenner’s Bioecological Model of Human Development (BMHD Bronfenbrenner & Morris, 2006). Bronfenbrenner’s Bioecological Model of Human Development is a model comprised of multiple systems of influence on people’s behaviour and development, which incorporates the broadest level of cultural influence narrowing to the most proximal direct influences of family and immediate community (Bronfenbrenner & Morris, 2006). Although, the analysis was undertaken by non-Indigenous researchers, all findings were reviewed by Author SL, an Indigenous leader working in the Community Controlled Health Services.

Results

Participant Characteristics

Population and participant characteristics are shown in Tables 1 and 2, respectively.

Table 2.

Characteristics of the interview and focus group participants (N = 73).

Aboriginal and/or Torres Strait Islander Status of participants
Identified Aboriginal and/or Torres Strait Islander	46 (63%)
Other or unknown	27 (37%)
Role
Community member	28 (38%)
Aboriginal medical service staff (e.g. Aboriginal health workers, nursing, medical)	34 (47%)
Carer or family member	9 (12%)
Unknown	2 (3%)
Gender
Female	56 (77%)
Male	17 (23%)
Age
24 and under	3 (4%)
25–44	21 (29%)
45–64	24 (33%)
65 and older	19 (26%)
Unknown	6 (8%)
Education
Primary	6 (8%)
Junior high	14 (19%)
Senior high	6 (8%)
Technical certificate or diploma	11 (15%)
University or higher	15 (21%)
Unknown	21 (29%)
Employment
Full time	33 (45%)
Part time	6 (8%)
Home duties	3 (4%)
Student	1 (1.5%)
Centrelink support	5 (7%)
Retired	10 (14%)
Other	1 (1.5%)
Unknown	14 (19%)
Relationship status
Married/defacto/partner	23 (32%)
Single	12 (16%)
Separated/widow/divorced	6 (8%)
Unknown	32 (44%)

Framing Within Bronfenbrenner’s Bioecological Model of Human Development – The Influence of Culture and Place

Results highlighted how dementia care in the Aboriginal communities who participated in the study were influenced by two contrasting models of healthcare: a Social and Emotional Well Being Model and a Biomedical Model. It was evident that these models have alignment with Indigenous cultural values and non-Indigenous cultural values, respectively. The themes that emerged from the interview and focus group data evinced two contrasting multi-level sets of cultural and social factors underlying dementia care and an individual’s attitudes toward suitable dementia care. The multi-level themes and the strong presence of cultural influences is consistent with Bronfenbrenner’s Bioecological Model of Human Development (Bronfenbrenner & Morris, 2006). Framing the themes within an adapted Bronfenbrenner’s Bioecological Model of Human Development faciliates a well-ordered comparison between the Social Emotional Wellbeing and Biomedical models. Dementia healthcare factors align with the four levels of Bronfenbrenner’s Bioecological Model of Human Development:

1. Macrosystem, which incorporates the values and ideologies of the culture;

2. Exosystem, which incorporates specialist services;

3. Microsystem, which incorporates community-level initiatives and services and;

4. Individual, which incorporates individual knowledge, values, attitudes and behaviours.

Macrosystem - Dementia Care at the Cultural Interface – Juxtaposing Ways of Supporting People with Dementia

While distal impacts on service delivery, such as cultural influences, can be hard to identify and operationalise, it was evident that a cultural lens filtered through participant responses. References to Indigenous ways and ideas about culturally appropriate dementia care were put forward. Underlying these sentiments, the tone indicated the disparity between two cultures (Indigenous and non-Indigenous), two ways of delivering health care, and the need to improve and change current sections of health service delivery before they are truly culturally appropriate. Discussions highlighted where services addressed cultural needs, as well as gaps in services from a cultural perspective. Culture was also seen as impacting treatment when cultural stereotypes distorted the interpretation of symptoms. The patterns of Social Emotional Wellbeing and Biomedical models as a function of culture are discussed below.

“The biggest issue there is when they’re Indigenous. Indigenous family want them to stay on Country. That’s something that we’ve got to work towards here, to be able to cater for that.” (DREAMT_CC_March2018_5)

“…cause a lot of Aboriginal and Torres Strait Islander people look at you like you’re not all there when you ask them some of the questions.” (DREAMT_CC_March2018_5)

“We don’t necessarily look for a nursing workforce unless they’re community control trained. ‘Cause, you’ve got to be a special someone to work in community control because you have to be able to work as a team. You have to be able to take direction from Tom, Dick and Harry because there’s no real hierarchy here.” (CC_March2018_5)

“…the police had seen this Aboriginal, a female she was, I think it was in the news, seen her staggering and whatever, and they thought she was drunk and blah, blah, blah. But she was a diabetic. So, there is people like, with the dementia, they might see such and such wandering around thinking, he’s only drunk, we won’t worry about that. And, dementia people do”. (CC_March2018_4)

Social and Emotional Wellbeing Model

Themes emphasising the need for Social Emotional Wellbeing in Aboriginal dementia care aligned with Bronfenbrenner’s Bioecological Model of Human Development and are displayed in Figure 1 below.

“You can talk about dementia all you like, but what about the effects on the family? The social and emotional wellbeing of it, but what are the effects is what I’m talking about. Financial affairs, health affairs. … Well, what’s in place? What makes it easier? You need something easy to make it easy.” (CC_March2018_6)

Figure 1.

Social Emotional Wellbeing themes as they align with Bronfenbrenner’s Bioecological Model of Human Development.

Exosystem Themes – Diminished Access to Tealth Services and the Benefits of Telehealth

At the exosystem level participants discussed the limited access to health services, which included geriatric services, and the benefits of telehealth for specialist appointments. Within this theme, it was evident that telehealth aligns with a more culturally appropriate Social Emotional Wellbeing model of dementia care. That is, participants discussed how it reduces the burden of travel; allows clients to stay connected to Country and community; and incorporates a more inclusive approach to care through facilitating family attending consultations. Having multiple stakeholders (e.g. family, patient, Aboriginal Health Worker) in specialist telehealth consultations has numerous benefits. Participants described the value of informing carers, family members and healthcare staff about dementia treatment and care options, as well as having an inclusive approach to ongoing care. Increasing access to specialist dementia care at a local level increases the agency of patients, family members and local health workers as they become more involved in the decision-making processes that may otherwise occur at a broader level.

“People have got to leave other loved ones at home, the animals, that kind of stuff you know. Telehealth is way better.” (Site 1, Health Service Staff)

“Yeah that’s why the telehealth I think will be good. Because like … with dementia, they’d obviously get a family member in there as well. And the doctor or specialist can relay some messages. Like, “these are some tips.” They can get the family member more involved, I guess, more educated so they can help.” (Site 1, Health Service Staff)

Microsystem Themes – SEWB Programmes Increasing Community Cohesion

At the microsystem level, themes were identified surrounding the existence of Social Emotional Wellbeingprogrammes and commitment to community cohesion. Overall, these services were identifed as:

• Reducing isolation for people with dementia;

• Increasing the visibility and awareness of people with dementia

• Allowing people to remain supported within their own community;

• Providing some support to carers;

• Increasing the cohesiveness of the whole community.

The gaps in these services could be addressed by coordination of existential services to ensure local support and adding further, more explicit, education (e.g. workshops).

At Sites 1 and 3, participants identified the local Healthy Ageing Program, the community health and wellbeing programmes for older adults, as beneficial to the social and emotional health of community members. Healthy Ageing Programme activities were seen to benefit the whole community, improving the visibility of older adults (the Healthy Ageing centre is situated in the main street) and increasing community cohesion. For example, regular Elders’ lunches, co-ordinated by Community Controlled Organisations and the Healthy Ageing Staff bring older people together.

“And that’s a good opportunity like we usually get about 50–60 come to those. And it’s good to just see them all yarning. Some of them haven’t seen each other till the last dinner, just don't get of the house or…don't mix in the same social circles kind of thing.” (Site 3, Health Service Staff)

Participants emphasised the need to have continued coordination of such social health services as they allow people with dementia to stay in their own environment, address social isolation by bringing clients into community, and provide relief for carers. Indeed, it was widely recognised that support and knowledge for families and carers should be a priority. Aspects of carer support highlighted the need for education and social and emotional support for carers and improved respite care.

“Isolation, and capabilities, and another thing I focus on is enjoyment … It’s all about them not being lonely in their homes.” (Site 1, Community Leader)

“You know Blue Care services, NDIS, My Aged Care all that you know the domestic stuff, the lawn mowing. Like anything to make their life much easier, even the social interaction or social outing or whatever it may be. But yeah just all of that hand in hand.” (Site 3, ATSICHHO Staff)

“It’s a very personal thing and you need that special place for someone to speak their mind and you to understand and a shoulder to cry on.” (Site 1, Community Member)

“Even if it’s just like an information session so they know they’ve got support there if needed. Because it’s a hard job.” (Site 1, Health Service Staff)

“Respite is a big issue.” (Site 3, Health Service Staff)

These programmes had the potential to increase awareness but participants asserted that more needs to be done, especially in terms of education (e.g. workshops), to increase awareness and understanding of dementia.

“I think people are scared of them [people with dementia]. Especially, if you don’t know what to expect from that person. That’s just my perspective. I just think that people don’t know what to do here. People can back away from them. …This is what I was saying before about making the community aware and not be frightened of it.” (Pp 3 Site 3 community FG_20181010)

Individual Themes – Value of Social Support Over Medical Intervention and Quality of Life

Individual level themes reflect participant perceptions of what should be prioritised in caring for someone with dementia. Specifically, two themes emphasised the importance of both social support over medical intervention, and quality of life. These themes are somewhat related, as participants discussed how social support can improve quality of life.

Participants discussed the value of social support, especially as dementia is often viewed as a social problem rather than an individual medical issue. Perceived solutions were support-based rather than treatment-based. For example, participants valued social health services, carer support and social and emotional wellbeing programmes more than medical treatment (e.g. medication, medical consultations).

“I think [dementia] is a social community problem. In a big way.” (Site 3, Community Leader)

“…Because some of them, like the family, just get that frustrated or they’ve been through it for so long they just give up and then the client is left on their own to battle. Whereas if they had more understanding and put strategies in place to deal with it, it wouldn’t hurt so much.” (Site 3, Health Service Staff)

Participants also prioritised improvements in quality of life for those living with dementia. This often meant that community members found their own ways to manage family members with dementia rather than engaging in medical treatment to manage symptoms. The ideas that community members developed were often creative, culturally appropriate and strength-based. One participant noted that, when caring for someone living with dementia who experienced irritation and aggression, they used a sewing machine to promote feelings of calm, safety and joy.

“It’s finding the thing that makes people happy and feels safe…” (Site 3: Health Service Staff)

Quality of life for anyone, including persons living with dementia, is centred around safety and familiarity.

“When a person living with dementia goes walking or does not know their whereabouts they need a “… safe environment to do so on community and not send them to a facility away from home…away from family.” (Site 2, Community Members)

Biomedical Model

Figure 2 shows the Biomedical Model themes as they align with Bronfenbrenner’s Bioecological Model of Human Development. Biomedical themes focussed on existing “mainstream” dementia service provision that may benefit from adjustment to become culturally appropriate.

Figure 2.

Biomedical themes as they align with Bronfenbrenner’s Bioecological Model of Human Development.

Exosystem

A prominent theme identified at the exosystem level was the maldistribution of specialty services. Specialty health services are concentrated in metropolitan areas, with limited access for regional and rural clients. Participants explained that travelling long distances for geriatrician appointments for dementia treatment was time-consuming, costly and anxiety-inducing.

“It’s a daunting experience for them. Because it’s a lot of the oldies that have to travel away. They have to have somebody to go with them. And if they don’t have family members, they’ve got to go to a big city, to a hospital they’ve never been to before. They’ve got a lot of anxiety … And a lot of them would rather not do it. They’d rather just be sick.” (Site 1, Health Service Staff)

The issue of maldistribution is w’rsened through the lack of accommodation at the provider end. Specialist services may fail to understand the challenges involved in attending such appointments. Appointments are short, and often require further travel for computed tomography (CT) scans and follow-up appointments.

“We’d rather take them (travel to appointments) than put them on the bus because it gets there in the middle of the night. Like we had one went down on the bus at 8 o’clock at night and, because she’s a stroke victim, by the time she turned up to the motel they thought she was drunk and they wouldn’t let her in…” (Site 3, Health Service Staff)

“Especially when you drive all that way you get down there for a five minute consult. You just want to slap someone.” (Site 3, Health Service Staff)

Microsystem

At the microsystem level, two themes were identified: Lack of dementia knowledge within community healthcare staff as a result of the medical specialisation and centralisation of dementia knowledge; and competing priorities in the provision of healthcare.

Participants discussed how general practitioners lacked the specialised knowledge that is needed in managing people with dementia. In rural and regional areas, general practitioners are often left with the responsibility of caring for clients with dementia, yet are limited in their ability to do so.

“We’re fairly isolated. Not only in terms of clinical skills, and clinical support skills, but also in terms of clinical education.” (Site 1, GP)

Discontinuity of care by general practitioners was also a strong concern, with the transience of local general practitioners in rural and remote areas. This added further difficulty to maintaining quality dementia care within the community.

“It is, but the trouble with out here it’s got all these different doctors. You go and see one doctor one day, one month, and you come back you want to see the same doctor, he’s not there. You see another doctor.”(Site 3, Community Member)

This gap in local dementia knowledge was also identified more broadly. The ability of Aboriginal Health Workers to effectively identify, screen and treat dementia was limited. It also restricted their ability to provide accurate information to the community on how best to identify dementia symptoms and care for people with dementia.

“There is only so much information we can give, on dementia. Like we’re not even educated ourselves in it.” (Site 1, Health Service Staff)

“A fully trained person in dementia out here to work with Blue Care and the hospital. We do need someone that’s really trained in dementia and that sort of thing. A permanent person here, not someone who comes every six weeks. Someone who’s here all the time, and who can go and visit people in their homes.” (Site 3, Community Member)

Finally, competing healthcare priorities within the Community was identified at this microsystem level. general practitioners and Aboriginal Health Workers explained that it was difficult to focus on just one issue when there were many others to consider. Resultantly, considerations of dementia and screening for it were often pushed to the side. One general practtioner described the feeling of being overloaded with treatment of other “fundamental issues”.

“Again, because of the lack of support, and lack of resources, and one doctor to 40 patients with only four hours a week. Sometimes, I use the analogy, ‘I was too busy putting out fires to backburn, and do all those screening tools’.” (Site 1, General practitioner)

“In this community we have so many things that are going on, it kind of gets a little bit overwhelming … I mean, you look at the calendar of awareness days and there’s not a week that goes by that there’s not some kind of awareness [day] you know.” (Site 3, ATSICCO Staff)

Individual – Distrust of Medication and the Fatalism of Dementia

At the individual level two main themes were identified within the Biomedical Model: distrust and fatalism. Participants expressed their distrust of biomedical models, especially within the context of their belief that dementia is an inevitable part of the ageing process (fatalism). These themes interact with those at the microsystem (i.e. gaps in local dementia knowledge), as there is a lack of evidence-based information underlying some of the sentiments.

Distrust refers to the mistrust of dementia medication and its effects on people. Some participants expressed doubts regarding the effectiveness of the medication, particularly in its ability to slow the progress of dementia.

“I didn't see any different. I just thought they were … progress[ing] the same as anyone without the drug.” (Site 3, Health Service Staff)

Others feared that medications that are used for symptoms of agitation or distress in persons living with dementia can cause excessive withdrawal or cognitive impairment.

“My opinion is when they get on the medication they just turn to zombies. They just go downhill.” (Site 1, Community Member)

“You can drug them up. But who wants a walking zombie? I don't.” (Site 3, Health Service Staff)

The theme of fatalism refers to the belief that future events are inevitable. This means that some participants, especially those who identified asIndigenous, understood dementia as a natural progression of ageing.

“When people say to you, “I’m having trouble remembering,” do you think they’re wanting some sort of medical or nursing help? Just some reassurance that it’s a part of life – it’s not that there’s something wrong with them…” (Site 2, Health Service Nurse)

Discussion

This study explored the perspectives and experiences of dementia diagnosis and care with Aboriginal Medical Service staff and community members residing in regional and rural areas of Queensland, Australia. Whilst this research was embedded within a larger project that examined the feasibility of a telehealth model of care for dementia, the qualitative insights shifted the focus onto Community understandings and priorities for dementia care.

Overall, themes described two potential pathways of dementia care: one consistent with a dominant biomedical model and one which aligns with a Social Emotional Wellbeing model. These two pathways can be positioned within a cultural context (Commonwealth of Australia, 2017; Gee et al., 2014) and invites examination of the cultural impact on dementia care in Indigenous Communities. Bronfenbrenner’s Bioecological Model of Human Development (Bronfenbrenner & Morris, 2006) highlights cultural and social factors influencing dementia care for people living with dementia and their families and allows for comparison across Biomedical and Social Emotional Wellbeing models. This paper has highlighted the cultural fit of existing services and models of care. At the cultural interface, these services have the potential to improve access (cultural and geographical) for Indigenous people living with dementia.

Cultural (Macrosystem) Impact on Dementia Care

The values and goals (cultural/macrosystem) of a biomedical model stem from the attitudes and ideologies of the dominant Western culture, where health is largely understood as the absence of disease or illness (Baum, 2015). Biomedical models rarely acknowledge the connectedness of social, political and economic determinants that influence both physical and psychological health. This compares with Indigenous views of health being based on interconnectedness between individuals, family, kin and community (Gee et al., 2014) where dementia is a shared experience. The importance of connection to land and culture cannot be understated and therefore access to culturally appropriate dementia care on one’s own Country and within one’s own Community is a necessity.

This current study drew upon the perspectives of Indigenous Community members and Aboriginal Medical Service staff. It highlighted that services with a Social Emotional Wellbeing focus caring for family and community, not just the individual, should be at the heart of dementia care. This aligns with Indigenous meanings where Social Emotional Wellbeing is central to a holistic definition of health (Gibson et al., 2020) and the collective strength and wellbeing of the community are valued, alongside physical, social, emotional and cultural wellbeing of individuals and their family (National Aboriginal Community Controlled Health Organisation, 2020). In this context, health means to reach one’s potential and bring about the total wellbeing of the community (National Aboriginal Community Controlled Health Organisation, 2020) with strong relationship networks and connection to Country (Dudgeon et al., 2020). The discussion below attempts to highlight overlap or where the cultural interface of dementia care can be adapted to promote culturally appropriate care.

Maldistribution of Services and Inequitable Access to Dementia Care – the Exosystem

At the exosystem level, participants discussed the limited access to specialist dementia services, which are located predominantly in urban areas. Maldistribution of services means access is reliant on extensive travel off-Country potentially causing discomfort and unnecessary cost. The benefits of telehealth options for specialist services were discussed as they can provide specialist care on-Country with support of family and community.

On face value, telehealth could be considered a component of the biomedical model of health. However, when considering potential benefits for people living in Indigenous Communities (Caffery et al., 2018; Smith et al., 2021), telehealth can be viewed as an opportunity to support Social Emotional Wellbeing. This is based on its ability to reduce separation from family, community and Country when accessing health services. This is particularly true for access to specialist care that is largely urban-based. Telehealth can be a culturally safe way to access specialist services with the added potential advantage of including family and local healthcare staff and increasing local knowledge (Caffery et al., 2018; Moffatt & Eley, 2010).

Priorities and Services in the Local Community - Microsystem Influences

A number of dementia care priorities were identied at this proximal level of the microsystem such as the need for: Social Emotional Wellbeing programmes; families and carer support; integrated social health services and the importance of Community cohesion and strength. These compete with barriers to effective dementia care such as: limited local dementia knowledge and competing health priorities within Indigenous Communities. The emphasis of factors at this level is consistent with Bronfenbrenner’s model in that individuals have a direct relationship, and are actively engaged, with factors at a microsystem level even though these factors are themselves a function of the more distal or indirect influences (2006).

While primary health medical services are offered, they are not always what is desired. This study’s findings showed that people commonly report that there are other health priorities in their community that feel more acute (e.g., suicide prevention, diabetes) and therefore take precedence over medical interventions for dementia. Harfield et al. (2018) outline the characteristics of primary care health services that include the need to be holistic and prioritise community needs.

What is desired, as identified across both individual and microsystem themes, is an emphasis on community services to support people with dementia and their families. Participants expressed the difficulty of supporting people living with dementia. There is a need to shift knowledge and resources from tertiary urban specialised knowledge sources to improve local dementia knowledge and support to primary care settings. Where Social Emotional Wellbeing programmes and social health services exist within communities, families and carers of people with dementia feel supported and communities appear to tackle dementia in a more cohesive strength-based way. There are existing health services (not necessarily focussed on dementia) that are shown to be effective which draw upon a Social Emotional Wellbeing approach such as the Aboriginal Health Council of Western Australia

Smith et al. (2011) identified a preference for strengths-based, community-focussed approaches to dementia care (Smith et al., 2011). Similarly, Wettasinghe et al., highlight that a whole-of-community approach is important to Indigenous people in their older years (Wettasinghe et al., 2020).

Participants also identified the need for coordinated and culturally appropriate community services. While one healthy ageing programme was successful in attracting and supporting older adults, the absence of Indigenous people was noticeable.

Lo Giudice and colleagues (2016) appeal for culturally appropriate responses to understanding dementia in the Community, diagnosis, care, and the need for further work to consider ‘ageing well’ for Indigenous peoples. A current research trial known as ‘LetsCHAT’ is being conducted to consider the potential for culturally appropriate support for persons living with dementia or cognitive impairment delivered in the Community Controlled Service primary care setting (Bradley et al., 2020; Lo Giudice et al., 2016).

Overall, the current findings indicate the need for focussing resources to develop integrated dementia services that address Social Emotional Wellbeing needs within each community. Specifically, there is need to: increase dementia awareness and knowledge within local communities; build integrated community networks and dementia services addressing Social Emotional Wellbeing needs where there are none; and ensure existing services are culturally inviting to Indigenous people with dementia and their families.

Attitudes and Needs of People Living with Dementia and Their Families - Individual Level

Attitudes and desires toward dementia care were central to the themes at the individual level. Participants expressed attitudes toward what was and was not needed for people with dementia and their families. Overall, these attitudes were grounded in the view that dementia is more of a social or community problem than a medical one. Therefore, providing care in the community and on Country is an important aspect of appropriate dementia care, as is ensuring support for families and carers of people with dementia (Cox et al., 2019; Smith et al., 2011). The contrasts between the biomedical and Social Emotional Wellbeing frameworks highlighted people’s preferences for care. That is, with distrust of medication and a fatalism regarding dementia there is less desire for biomedical intervention, and an emphasis on quality of life and social support (as opposed to medical treatment).

These findings are consistent with existing literature. Community members in other studies also had an arguably fatalistic approach to dementia, attributing dementia symptoms to the natural progression of ageing (Cox et al., 2019; Smith K et al., 2011). Cultural tension plays out here as a biomedical approach would warn that these views may be erroneous. Dementia, according to biomedical approaches, is not a ‘normal part of ageing’ (Dementia Australia, 2020) and the medications described by participants appear to be based on antipsychotic medication symptoms, and not the cholinesterase inhibitors used in attempting to slow the progression of Alzheimer’s disease. In general, as per the findings described below at the community or microsystem level, there is potential need for improved dementia knowledge not only in regional Aboriginal health services, but throughout Australian health professionals (Annear, 2020).

As expected, the interaction between Bronfenbrenner’s Bioecological Model of Human Developmentlevels is demonstrated as factors in one’s immediate environment impact on individual knowledge, expectations and attitudes. At the forefront of individual attitudes was the importance of social support. People discussed how social support could ease the burden of dementia and increase quality of life. Similar to other research, Cox et al. found that improving quality of life and feelings of safety were priorities when caring for community members living with dementia (Cox et al., 2019). Addressing individual needs then highlights the need for adequate dementia support at a local level.

Limitations

This study provides a greater understanding of how existing health services meet cultural expectations of people living and working in Queensland Aboriginal Communities. Originating from over 500 different Indigenouspeoples, each community across Australia is different and has its own set of needs. This study highlights what may be transferrable dementia care needs, but it should be noted that only three Communities were involved in the study.

The main interviewing and data analysis was undertaken by non-Indigenous researchers. While these researchers have extensive experience working with Indigenous people, cultural biases can remain and nuances of cultural understanding may have been missed.

Conclusion

Our findings highlight how culture can reflect two contrasting models of dementia care: a biomedical model and a Social Emotional Wellbeing model. Dementia care within regional and rural Indigenous Communities may benefit from a shift to a healthcare model which better supports Social Emotional Wellbeing. Within the Social Emotional Wellbeing model, several strengths were identified, including programmes and initiatives which nurtured the social and emotional wellbeing of people with dementia, their families and the broader community. These programmes had multiple benefits, including increasing community cohesion. Opportunities for improvement included the need to ensure continued coordination of social health services and further implementation of telehealth services for specialist appointments. Such services keep people with dementia on Country and supported within their own Community.

In comparison, the biomedical model highlighted how current dementia care and knowledge was specialised and centralised within urban areas. This had the potential to render dementia care and knowledge inaccessible both geographically and culturally. However, at the cultural interface, telehealth can increase access to specialist services and increased local education, as discussed by research participants. This would increase much needed local dementia knowledge. However, competing healthcare priorities in healthcare provision and the Community means that specialist care and biomedical interventions are not always desired. Therefore, increasing local dementia knowledge would facilitate informed decisions regarding biomedical interventions, increase capacity for care in the Community and potentially increase dementia care as a priority for healthy ageing. This study suggests that Indigenous healthcare services may yield the most improvements when aligned with community priorities and Indigenous ways of being, knowing and doing.

Footnotes

Acknowledgements

We thank the interview participants from the community-controlled Aboriginal and Torres Strait Islander Health Services and members of the community. We also thank the following COH staff who contributed to the DREAMT project – Christine Howard, Danette Langbecker, Monica Taylor.

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 study was funded by the Australian Government Department of Health - Dementia and Aged Care Services (DACS) Fund.

Ethical approval

Human Research Ethics Approval was obtained by the relevant committees (HREC/18/QTDD/7; 20180000014/HREC/17/QCH/127-1188).

ORCID iD

Liam J Caffery

Note

Helen Haydon is a Research Fellow and Registered Psychologist who works across a range of projects in both the research and consultancy arms of the Centre for Online Health, Centre for Health Services Research. Her focus is on the effective use of technology to increase access to health interventions (e.g., online psychoeducational tools for carers; telehealth implementation, telemental health and allied health) and increasing health literacy in the community (e.g., dementia knowledge and digital health). She is particularly interested in using health technology to promote quality end-of-life care. Her current projects aim to increase care closer to home for people with dementia and with life-limiting illnesses (e.g., telepalliative care).

Anthony Smith is the Director of The University of Queensland's Centre for Online Health (COH). He is also an Adjunct Professor of Digital Health and Telehealth at the University of Southern Denmark, in Odense, Denmark. Professor Smith has around 20 years research experience mainly focussed on the planning, implementation and evaluation of new telehealth applications for clinicians and patients - in metropolitan, regional and remote areas. Professor Smith has developed and sustained an exemplary international track record in the establishment and evaluation of telehealth, principally in paediatrics and more recently in the adult and aged care disciplines. Specific research interests include the evaluation of feasibility, cost-effectiveness and diagnostic accuracy of telemedicine applications. Major research achievements have included the evaluation of wireless (robot) videoconference systems in paediatric wards; home telemedicine consultations for children with chronic health conditions; email-based telemedicine support for children with burn injuries; and a community-based telemedicine health screening programme for Indigenous children in the South Burnett region of Queensland. Current projects include the evaluation of telehealth applications in primary care settings and Indigenous communities; the delivery of tele-rehabilitation services into primary schools; online mental health support services in remote locations; and discipline specific clinical telehealth services in Queensland. Professor Smith has over 200 publications, including 180 papers in peer-reviewed journals, three edited books and 15 book chapters on telehealth-related topics. Whilst the field remains highly specialised in comparison to other disciplines, his work is now receiving over 1000 citations per annum.

Lauren Gleed is a graduate of a Masters of Public Health (majoring in Aboriginal and Torres Strait Islander Health) at the University of Queensland, Miss Lauren Gleed is passionate about improving health equity in Australia. She has experience in continuous quality improvement and system development in Aboriginal and Torres Strait Islander Community Controlled primary health, and Aboriginal and Torres Strait Islander health services research. Most recently, she is working for Australian Capital Territory Health in sexual health, blood borne virus and mental health policy as an Assistant Director.

Maike Neuhaus a health behaviour change scientist with more than 10 years’ experience in research and practice. She holds a Master’s Degree in Psychology and a PhD in Public Health. Prior to joining the Centre for Online Health, Maike was responsible for the evidence-based development, implementation and evaluation of health behaviour interventions at UQ’s Cancer Prevention Research Centre as well as the Centre for Research in Geriatric Medicine. Maike has been contributing to UQ’s teaching program as regular tutor and guest lecturer since 2012.

Sheryl Lawton has spent the past 10 years as the CEO of Charleville Western Areas Aboriginal and Torres Strait Islander Community Health (CWAATSICH) and has held the position of Deputy Chair of the Queensland Aboriginal and Islander Health Council (QAIHC) and is the South and South-West Region Director for QAIHC. These positions are in recognition of her dedication to Indigenous health services.

Liam Caffery is the Director of Telehealth Technology for the University of Queensland’s Centre for Online Health. Liam has a PhD in Medicine. His research is centred on pragmatic trials of telehealth services. Liam has a special interest in the use of telehealth for Indigenous health and rural health care delivery. He is involved in telehealth service development, delivery and evaluation across a broad range of telehealth services. Liam uses implementation research principles to understand why telehealth services work well in some scenarios and not others. He evaluates the effectiveness of telehealth from multi-disciplinary perspectives including clinical effectiveness, patient perspectives, economic aspects, organisational aspects, and socio-cultural, ethical and legal aspects. Liam also has an active research agenda in health informatics, in particular, in imaging informatics. Liam's work focusses on skin imaging for melanoma detection. Liam chairs dermatology working group for the DICOM standards development organisation as well as the technology group for the International Skin Imaging Collaboration: Melanoma Project. This project is an academia and industry partnership designed to facilitate the application of digital skin imaging to help reduce melanoma mortality. Liam is technology lead for the Australian Centre of Excellence in Melanoma Imaging and Diagnosis. Liam has previously been a member of the Standards Australia IT-014 Health Informatics technical committees for telehealth and messaging and communication. Liam has 25 years industry experience as a health informatician. His immediate past role was the Manager of Medical Imaging Informatics at the Royal Brisbane and Women’s Hospital. Previously, Liam had over a decade's clinical experience as a diagnostic radiographer. He has over 150 publications, including 102 papers in peer-reviewed journals, and 10 book chapters on telehealth-related topics.

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