Disability Service Providers Supporting Adults with Intellectual Disabilities and Dementia Living in Group Homes: A Qualitative, Exploratory Study

Abstract

Dementia is a global health issue. For adults with intellectual disabilities living with dementia, diagnosis and support pose unique challenges. For those who reside in shared disability supported accommodation (group homes), there are additional considerations regarding support and ageing in place. Semi-structured interviews with twelve staff from three disability service providers in Australia were conducted to explore the experiences of disability service providers supporting adults with intellectual disabilities and dementia. The study found that delays in diagnosis hampered timely and effective interventions and, consequently, the care and support received by those adults with intellectual disabilities living with dementia. This impacted organisations’ ability to adequately staff accommodation and remunerate disability support workers. This had implications for those in group homes, where the needs of other residents were affected. Lastly, while ageing in place was considered desirable, none of the provider organisations had guidelines for remaining in the home. This study highlights the need for further investigation into this growing population, including those living in the community.

1. Introduction

In 2017, the World Health Organization (WHO) introduced the current “Global Action Plan on the Public Health Response to Dementia 2017–2025” as an international mechanism for addressing the global public health impacts of dementia [1]. Australia, along with other signatory nations, has ratified this plan and has developed the “National Dementia Action Plan 2024–34” (the National Plan), which outlines a collaborative, national approach to dementia care and management [2]. The National Plan identifies adults with intellectual disabilities living with dementia as a priority group and acknowledges the impact of intersectionality as significant in the experience of dementia and in its care and treatment [2]. Crucially, the National Plan recognises equitable access to healthcare and support as a human right.

People with intellectual disabilities and dementia experience significant barriers in achieving quality dementia care and management, making dementia support for this group both inequitable and unique [3]. Identified barriers include: the high prevalence of co-morbidities; the lack of internationally recognised diagnostic criteria; the limited number of clinical experts in both ageing and intellectual disabilities; and challenges related to healthcare advocacy [4]. In Australia, a dementia diagnosis is usually the first step in being able to access government funded and other supports for the disease [5]. Where a person has an intellectual disability and dementia receiving effective diagnostic and post-diagnostic care however is hampered by the difficulty of navigating the intersection of the disability, aged care, and health systems. The National Disability Insurance Scheme (NDIS) is Australia’s disability policy platform and provides funding and support to eligible people to access the services and supports they need to gain greater independence and improved quality of life [6]. Government-funded aged care supports are provided through a separate policy and funding platform, and apply to those 65 and over—or 50 and over for certain priority populations—who require support connected to age-related needs [7]. To date, these systems have operated as silos, with neither well-equipped to support those experiencing the intersection of disability and ageing [8]. For example, people with intellectual disability are the second largest group by primary disability type to use the NDIS. Despite the high prevalence of Alzheimer’s disease in people with Down syndrome, the scheme’s focus is on providing funding and supports for people living with younger onset dementia [9]. Similar siloing can be found between the Australian health and disability systems, with Brooker et al. suggesting the systems have experienced “a lack of cross-sector capacity building and immature interdisciplinary models of practice” [10] (p. 3). Additionally, the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability uncovered system wide neglect of people with intellectual and cognitive disabilities in the Australian healthcare system [10,11]. Lastly, the responsibility for disability, ageing, and health is dispersed across all levels of government—Australian, state and territory, and local—creating further policy, service, and funding complexity, and potentially greater confusion for people with intellectual disability living with dementia and their supporters who seek to engage with them [2].

The policy imperative of older people remaining in their current accommodation regardless of increasing support needs, is recognised internationally as desirable for healthy ageing [12,13]. More specifically, the Edinburgh Principles, which provide best practice guidance on the support of adults with intellectual disabilities living with dementia, advocate for choice in where to live and indicate that any changes to living arrangements be planned [14]. However, certain factors increase the difficulty of ageing in place for adults with intellectual disabilities and dementia, including disability services currently being ill-equipped to support this to occur; ageing family supporters unable to continue in direct support roles; and restrictions around support funding [15]. Moreover, in Australia, most adults with intellectual disabilities who live outside the family home reside in shared disability supported accommodation, also known as group homes [16]. Ageing in place has been shown to be a challenging service and policy arena for people with intellectual disabilities ageing in group homes specifically [17,18]. This is because the group home setting is considered a more difficult environment than the family home in which to achieve ageing in place. Barriers include balancing the different needs of residents; assessing the impact of change on all residents in the house; and managing changing staffing requirements in a responsive and timely manner [17]. Further, staff report support for age-related changes as ad hoc with little systematic planning [18].

The number of ageing adults with intellectual disabilities generally is increasing and this is having an impact on existing models of disability support and on the disability service providers who deliver them [19,20]. As the needs of the ageing population of adults with intellectual disabilities increase, the role of paid support staff becomes more prominent, as they increasingly provide support to this population, often taking over from ageing family members [21]. Better understanding their experiences, ability to cope, training and other needs, is therefore of growing significance [22,23]. To our knowledge there has only been one other study in the Australian context investigating the experiences of paid staff supporting adults with intellectual disabilities living with dementia in group homes. This study suggests that dementia care in these settings is crucially dependent on the capacity of the disability workforce [24]. However, the study’s focus was on adults with Down syndrome and Alzheimer’s disease, and is now over ten years old.

This study seeks to expand and update the existing literature by investigating the experiences and needs of disability services providing support to the broader population of adults with intellectual disabilities living with or suspected of living with dementia residing in group homes. Further, while this study does not seek to provide an examination of changes to the service system since the introduction of the NDIS, it is situated within this altered context and therefore includes considerations of the implications of the changed policy landscape where apparent.

2. Materials and Methods

The study sought to understand how disability services providers experienced particular aspects of supporting adults with intellectual disability and dementia in group homes from diagnosis, to changes in support needs, and experiences of ageing in place. It also sought to examine the professional needs of disability services within this context.

As this is the first study in the Australian context since 2014 [24] to examine these issues from the perspectives of disability service providers, it was both exploratory and based on a qualitative approach using semi-structured interviews. Ten semi-structured interviews were conducted with twelve staff from three disability services providers in two different states of Australia by the same member of the research team. Two were large providers of disability services, with over 1600 staff and one a smaller provider, with approximately 200 staff. Specific roles within disability organisations were not targeted for interview. The criteria were that participants were currently employed by a disability services provider and were supporting at least one adult with intellectual disabilities living with or suspected of living with dementia who was residing in a group home setting. Semi-structured interviews were chosen because they provide a broad structure to the interview while allowing for the interviewer to seek clarification where necessary and to probe areas of interest [25]. This supports the exploratory nature of the study and its focus on participants’ perspectives.

Participants were asked about their knowledge of intellectual disabilities and dementia; to describe their experiences supporting an adult with intellectual disability living with or suspected of living with dementia residing in a group home, including to outline the diagnostic process, and changes to support needs; to share their experiences of ageing in place practices in their organisations; and finally to indicate ways in which they, adults with intellectual disabilities and dementia, and their housemates could be better supported.

To minimise disruption to work and to alleviate the burden of additional time commitments to participate by staff, all interviews were conducted during work hours with the permission of the provider organisations. Interviews lasted between twenty-five and fifty-five minutes, with an average duration of thirty-seven minutes. Eight were in-person and two were over the phone at the request of the participants. Additionally, three participants requested a group interview. We did not find the outcomes of this interview different to the individual interviews.

Ethics approval for the research was received by the Flinders University Human Research Ethics Committee (6056). All participants were provided with an information sheet about the project and consent form that they signed and returned prior to interview. Interviewees were made aware that their participation was entirely voluntary; that they could withdraw from the project at any time; they could refuse to answer questions; their confidentiality and privacy would be maintained; and their employment would not be affected by their participation in the research. Further, they were provided with the details of several free mental health services for additional support if needed.

Disability service providers across Australia that have shared disability supported accommodation for adults with intellectual disabilities were contacted and asked to help share information about the project with their staff. Three providers responded and key personnel in these providers shared recruitment information about the project via email to staff. Two providers facilitated interview locations, and one helped to organise interview dates and times. Interested and eligible staff at the other two providers contacted the research assistant directly to organise an interview.

Participant demographic details can be found at

Table 1. Participant Demographic Details and Pseudonyms.

Interview Number	Pseudonym	Position	Age	Highest Qualification	Country of Birth
1	Ben	Executive director	53	Postgraduate	Australia
	Adam	Senior manager	47	Postgraduate	Sri Lanka
	Helen	Chief data officer	35	High school certificate	Australia
2	Richard	Disability support worker	38	Postgraduate	China
3	Kate	Team leader	58	High school certificate	Australia
4	Michael	Disability support worker	62	Certificate III	The Netherlands
5	Rosemary	Client services manager	43	Certificate III	Australia
6	Lucy	Managing director	42	Postgraduate	India
7	Penny	Disability support worker	73	Certificate III	Australia
8	Mary	Disability support worker	61	Undergraduate	Philippines
9	Ken	Disability support worker	39	Postgraduate	Nepal
10	Tanya	Team leader	60	Diploma	Australia

. Of the twelve participants, seven were women and the average age of interviewees was fifty-one years. Five participants had postgraduate qualifications, and the next most common qualification was a certificate three. Certificate three is the equivalent of a high school certificate and indicates knowledge and skills in a particular vocational area [26]. Pseudonyms have been used to maintain anonymity.

All interviews were audio-recorded and transcribed verbatim by a professional transcription service with a confidentiality agreement with Flinders University. Interpretative phenomenological analysis (IPA) was used to guide the data analysis. IPA was chosen for several reasons. It is suited to studies with small sample sizes as it requires detailed case-by-case analysis of individual transcripts. It is appropriate for exploratory studies where what is known is limited. Further, it focuses on participants’ experiences and perspectives of their world. While IPA’s focus is about understanding people’s meaning making, it nonetheless requires a clear definition of the context and scope of this experience [27]. In this study, this context is defined by both the participant’s role, and the particularities of supporting an adult with intellectual disability and dementia in the group home setting. Specifically, this includes dementia diagnosis; changing support needs both of the adults with intellectual disability and dementia, and disability service providers supporting them; and ageing in place. Analysis was conducted according to the most recent iteration of IPA following the steps outlined below [27]. Each interview transcript was printed out and read individually for purposes of immersion in the data. Notes were then made on the individual transcripts focusing on participants’ experiences supporting adults with intellectual disabilities and dementia, as well as on identifying their professional needs. These notes were used to create experiential statements. Experiential statements reflect the participants’ experiences or their attempts to make sense of their experiences in relation to the research aim. Experiential statements were constructed for each interview in separate Word documents. These were printed and each statement cut out and arranged on a table to enable further analysis and the creation of Personal Experiential Themes (PETs) (see Appendix A). PETs reflect the process of mapping meaningful connections between the experiential statements for each interview. PETs were created for each transcript and typed into separate Word documents. These documents were printed and the PETs cut out and arranged on a table to enable additional analysis to create Group Experiential Themes (GETs). GETs represent commonalities between the PETs and points of interest to the study aim across the entire data set. A table of GETs was compiled, with the title of the GETs, all the related experiential statements, and illustrative quotes. The lead author (I.B.) conducted the analysis, and the GETs document was shared with the second author (R.W.). The two authors engaged in a workshop refining the GETs and reaching consensus on the final GETs through discussion.

3. Results

Seven GETs were constructed from the data. They are: ‘Symptom manifestation’, relating to the common and myriad symptoms of dementia and the difficulty recognising them; ‘Navigating the support journey’ or the challenges inherent in navigating both healthcare and disability services; ‘Diversity of care needs and responses’, relating to the diverse care responses and the varying experiences of accessing dementia care; ‘Training needs and experiential learning’, which discusses participants’ limited training in aged care support and the predominance of experiential learning; ‘The therapeutic relationship and support for staff’, which highlights the impact of supporting a client with dementia on direct care staff; ‘Dementia support in the group home setting is unique’, outlining the dementia care challenges for those affected, housemates, and staff; and lastly, ‘Staying in place but knowing when to move’, discussing the priority given to staying in current accommodation but the importance of knowing when to move.

3.1. Symptom Manifestation

When asked to describe how dementia first became evident or suspected in their clients, participants identified a number of changes, with memory loss the most common. By prevalence, this was followed by mood swings; changes to sleep and routine; noticeable declines in physical health and cognition, such as difficulty mobilising; and escalating behaviours, such as aggression and confusion. Two participants also mentioned noticing deterioration in functioning occurring earlier in clients with Down syndrome compared to their other clients with intellectual disability: “The indicators are most likely deteriorating of memory, memory loss and confused, and gradually more and more confused …” (Richard—Disability support worker). There were also other symptoms of dementia discussed that were each only identified by one participant. They included: communication difficulties; odd behaviour; needing a lot of prompting to follow instructions; difficulty swallowing; hallucinations; anxiety; loss of confidence; and repetitiveness: “Just out of the ordinary kind of behaviour, crying for unknown reasons, inability to mobilise, doing odd things” (Kate—Team leader).

While the symptoms identified varied, all participants mentioned at least one symptom they believed to be dementia-related. However, almost half of all participants indicated that they struggled to identify them:

I think that … recognise as well if you see a fast decline I think, but if it’s a very slow, gradual one I think it’s hard to pick up for anyone around one of the clients. And if there’s an intellectual disability it gets a little bit tricky as well.

(Michael—Disability support worker)

Difficulty with understanding the symptoms of dementia may also be related to a reported lack of dementia-specific training, which will be discussed in greater detail below.

3.2. Navigating the Support Journey

Team leaders, directors, and managers were particularly critical of the process required for securing funding and support for their clients with intellectual disabilities suspected of living with dementia. Dementia diagnosis is the first step in accessing additional funding to be able to meet changing support requirements. Participants described the difficulty of achieving a formal diagnosis and the time-consuming nature of the process. General practitioners (GPs) were considered vital to the diagnostic process. However, participants reported varying levels of willingness and engagement by GPs to be involved in either assessing adults with intellectual disabilities or referring them onto geriatricians or specialist psychiatrists for diagnosis:

… the lady I support, I’m her key worker and she has got the most amazing GP. But Trudy’s GP, the 80-year-old one, he just is like “Oh, don’t want to know. She’s 80, she’s going to die of something. Just as long as she’s happy, she’s not in pain” and I’m like “Oh my god”.

(Tanya—Team leader)

This could mean individuals had widely differing diagnostic experiences, resulting in significant variation in levels of care, support, and management. Further, securing a diagnosis could take between three and twelve months. Participants noted this as an especial issue for adults with intellectual disabilities whose limited employment opportunities meant many were reliant on government pensions and the public healthcare system: “So, you could be six, twelve months down the track before you’re getting effective care” (Ben—Executive director). Additionally, there was recognition that achieving a diagnosis of dementia where there is an existing intellectual disability was more challenging for healthcare professionals and one participant particularly mentioned the additional complexity of diagnosing dementia where a person may also have complex communication needs: “ … especially where you’ve got clients who are nonverbal as a result of intellectual disability, how does that help you make a diagnosis of dementia?” (Ben—Executive director). A further complicating factor for disability service providers wanting to begin the process of diagnosis was the need to engage key stakeholders such as family, guardianship boards, and support coordinators. Support coordinators support NDIS participants to articulate their goals, plan and coordinate their support, and connect them with service providers [28]. This often led to further diagnostic and other delays.

Lengthy delays in diagnosing dementia, meant that disability service providers were hampered in their ability to respond to changed support needs in a timely manner, given the need to have a diagnosis before additional funding can be applied for. Participants reported having to find funding from elsewhere in their organisation to support increased staffing, or in some cases, relying on the goodwill of staff to undertake additional work without commensurate remuneration. Further, the delay from diagnosis was exacerbated where a client was a participant of the NDIS and funding changes have an onerous assessment and reporting process attached to them:

So, they’ve [NDIS] got all these supports and everything let’s say for people with dementia but then you’ve got the gap about it implementing because by the time the plan comes in they want the reports and the reports are not there and OT [occupational therapist] and FC—the functional capacity assessment has to be done …

(Lucy—Managing director)

Securing additional funding from receiving a dementia diagnosis, meant that adequate staffing levels could be maintained, even if a number of disability support workers reported not being equipped to maintain high quality support, as is discussed in the next two themes.

3.3. Diversity of Care Needs and Responses

There was significant variation in the support provided to adults with intellectual disabilities living with dementia, which had implications for the quality and timeliness of their support. Disability support workers spoke about the importance of getting to know the individual, and practicing person-centred care as they would ordinarily do. They also stressed the importance of continuing to follow behaviour support and care plans that reflect changed support needs following the person’s dementia diagnosis. Participants mentioned just being comforting and repeating things; being gentle and keeping the client in a good mood; being loving; and demonstrating empathy and understanding. In some cases, disability support workers indicated that they were not clear on the specific type of supports to provide when a client is suspected of or diagnosed with dementia:

But we don’t know what active steps to take either apart from being comforting and repeating things and like I whisper in their ear or tell them in the morning when they come out of bed, “It’s Wednesday today”. That’s all you can do …

(Michael—Disability support worker)

Across the providers, the general response to suspected dementia in a client involved recognising symptoms, securing a diagnosis, and managing the changed supports. Who was involved in this process varied but generally it began with disability support workers noticing changes and reporting these to health or medical professionals like registered nurses or GPs. Disability support workers expressed the importance of observing clients and carefully noting changes:

We can pick up the incident, but I think we are not smart enough to diagnose a thing. But it helps, anything we know we notify, build a picture, and when we take our clients to see the GP, we’ll let them know.

(Richard—Disability support worker)

Given the previous discussion about the lack of dementia knowledge, the difficulty of picking up changes and the complexity and time delays in diagnosis and funding, unsurprisingly the executive director of one service provider indicated that the ability for disability services to identify and respond to changes in support needs remained unsatisfactory:

But you know the biggest thing with dementia and being successful in managing people who have dementia or supporting them is early diagnosis, early treatment, and we don’t have the ability to navigate that. And even with the GP medicating someone, they’re still a GP. Best will in the world, you want a geriatrician or an older person’s psychiatrist, and there’s got to be an efficient pathway to get that care … And then that specialist support is about training of the staff in the unit, but then there’s got to be some funding to do any infrastructure changes you need in the house so it’s appropriate for somebody with dementia.

(Ben—Executive director)

3.4. Training Needs and Experiential Learning

Participants spoke about the need for additional aged care and dementia specific training to be incorporated into initial training provided to people working in disability support. This was seen as especially important for those working directly with adults with intellectual disabilities living with or suspected of living with dementia: “We need in our profession in disability, something that covers the whole spectrum because one [ageing] affects the other [disability]. They’re interwoven. The whole industry needs some sort of formal training” (Tanya—Team leader). This was recognised as potentially problematic given the current separation of disability and ageing in different sectors, and was described by one participant in the following way: “I think more training for staff with regards to dementia but again it’s very, it’s a grey area because they’re hired as disability support workers, so you’ve got to broaden the title” (Rosemary—Client services manager).

Disability support workers generally obtained most of their knowledge about dementia and the effects on their clients through experiential learning or supporting clients with intellectual disabilities living with or suspected of living with dementia in their day-to-day work roles. The most common strategies employed to increase their knowledge about dementia and how to support their clients were through talking with other staff and sharing experience and knowledge; through reading care plans, assessments, and fact sheets on the individual clients; through conducting personal research; undertaking short courses; observing clients closely; and watching dementia related programs on television:

Yes, I don’t think you ever know enough. I see things on TV, I listen to things, I watch programs to give me ideas, I hear what people say who’ve been to other places where they’ve got new things.

(Penny—Disability support worker)

3.5. The Therapeutic Relationship and Support for Staff

More than half of participants spoke about the emotional labour of supporting a client with dementia, whether it was because of behaviour labelled as complex such as aggression; witnessing a client’s health and well-being decline; or simply the more intense level of support needed. In the case of one house where a resident displayed behaviours labelled as complex a team leader shared that they had high staff turnover and found it difficult to replace staff, explaining:

So, it makes a lot of staff quite angry, and they get pissed off because they think that it’s a personal attack on them, but it’s the dementia; it’s what’s going down. And they can’t rise above that and think, “Well, that’s her dementia, put it in a box, that’s where it belongs, it’s not about me”. We have a lot of problems getting staff to our house because of that also … It is, it’s an absolute nightmare. We have only got three residents and psychologically it’s one of the most difficult houses. It’s quite bad … new staff … they’re told not to go to Rose Road because it’s such a difficult house.

(Tanya—Team leader)

Half of participants mentioned the important role senior staff and staff with regular shifts in particular group homes play. Both these groups were deemed to have considerable knowledge of dementia and of individual clients and were therefore well-placed to provide optimal care while also being a source of knowledge and support for more junior and casually employed staff:

I’ve seen many senior staff resign or retire and it’s a loss because for us to come here—I’m only here three years and still catching up with that experience, that subtle touch, and knowing this person with a disability, those with dementia, knowing they’re like this and that … and when they go they take all that knowledge with them, and the relationship and foundation they built up with the client.

(Richard—Disability support worker)

A number of disability support workers indicated that it is often the direct carers or disability support workers who are the first to notice signs of dementia among the clients they support. Interestingly however, the disability support workers interviewed for this study reported feeling judged; not being adequately supported by their organisations; not having a say in the care and support of clients; and being at the bottom of the ‘support hierarchy’: “No, no, no, the carers are way down the bottom. So that would be like doctors, the therapists, the family” (Michael—Disability support worker). Where disability support workers felt supported, they could express how they were feeling, worked collaboratively with family, and any decisions made regarding clients in the organisation were transparent: “I’m only a carer, so I don’t have any say as such, but we can all say how we feel if something isn’t right” (Penny—Disability support worker).

3.6. Dementia Support in the Group Home Setting Is Unique

A number of participants indicated that supporting adults with intellectual disabilities and dementia in the group home setting was more complex than in other settings for several reasons. The ratio and number of staff in group homes were identified as especially important, for clients and staff. Where a person is living with dementia, and needs more support than previously, this often requires a change to the staff to resident support ratio in a house. Additional funding needs to be secured to pay for this. For example, disability support worker Lucy described how getting extra funding following a dementia diagnosis for client Robert who was living in a home with two other residents allowed the disability support workers to respond to his changed dental hygiene needs; maintain the same level of support for the other residents; and not cause additional stress for staff. Conversely, team leader Kate described the impact on staff and residents when additional funding has not yet been secured, even though the experience of dementia may have caused support needs to change: “They definitely need to be supported to have extra staff to support everyone in the house and each other. Very reliant on goodwill sometimes but we are trying” (Kate—Team leader). In addition, particularly where a person may be experiencing issues with routine, in a group home setting there could be significant consequences. As one team leader explained:

Yeah, so there is an impact that, bit of an example would be that Christian may not want to get in a car, but that car is reliant on picking up some other clients from the same house, so therefore, the staff have to reach out and say, “Christian won’t move. I need someone to help pick up the other clients.” So, that requires a lot of coordination how that’s going to happen. So, it has a knock-on effect.

(Kate—Team leader)

Other participants noted that dementia in one housemate could cause behaviour changes in other housemates, such as increased anxiety and depression:

I think they’re [housemates] anxious because sometimes people with dementia are unpredictable and say things, and that other person that they’re saying it to doesn’t have the emotional or the intelligence to actually realise that it’s the dementia that’s making them act that way and sometimes they can take it really personally.

(Tanya—Team leader)

Additionally, one disability support worker indicated that where there is a person with dementia in a house, matching new housemates became more difficult.

3.7. Staying in Place but Knowing When to Move

When asked about ‘ageing in place’ (staying in existing accommodation as residents age) within their organisations, all participants expressed the importance of adults with intellectual disabilities remaining in their existing homes for as long as possible. However, some disability support workers acknowledged they did not have a clear understanding of their organisation’s policy on this: “I actually really don’t know about the process there [ageing in place] because we don’t know what actually happens” (Ken—Disability support worker). None of the providers had formal protocols around this despite stressing its importance: “And they try to stretch it as long as they can to keep people in the house and have a normal lifestyle with the other guys they’ve been with” (Michael—Disability support worker). Without clear ageing in place frameworks, responses appeared ad hoc and dependent on individual cases. Further, no dementia specific home modifications were mentioned to assist in achieving ageing in place, and one participant indicated he believed this was not yet practice across the disability sector generally, despite an ageing client base.

Half of respondents indicated that they believed while ageing in place was important, depending on support needs, a move could be the better option and in one case, the distinction was made between early and late stages of dementia in relation to housing needs:

Like I said, I don’t want to take anything away from the client because that’s her home, but I want the best outcome for her. And I definitely think at this point in time she’s not going to get any better and being out of the SIL environment would be beneficial for her.

(Rosemary—Client services manager)

Supported independent living (SIL) refers to support and funding received through the NDIS to help participants live in the home of their own choosing and to live as independently as possible [29]. It was notable that none of the participants mentioned any explicit policies, guidelines, or processes for planning for or managing a move out of a home into alternative accommodation.

4. Discussion

In exploring the perspectives of a range of staff from three disability service providers, key findings demonstrate barriers to effective diagnosis, treatment, and support at diverse levels. At the policy level, bureaucratic complexity in reporting requirements resulted in delays in necessary funding changes for enhanced support needs, particularly where the person was a participant of the NDIS. Regarding the service system, the limited availability of relevant medical personnel through the public health systems resulted in long wait times to secure a diagnosis. This filtered down to service providers, where diagnostic delays, cumbersome reporting, and the need to engage with multiple and sometimes conflicting stakeholders, including support coordinators through the NDIS, resulted in disability service providers not having the requisite funding flexibility to be able to respond to their clients’ changed support needs, including the ability to change staffing levels and renumerate staff accordingly. At the group home level, this resulted in poor quality care with repercussions for the person with intellectual disability living with dementia, housemates, and support workers. For disability support workers, the siloing of ageing and disability meant most had limited training in aged care and consequent unease in engaging with the age-related needs of their clients; poor quality support of clients; a deterioration of the therapeutic relationships in some cases; feeling unsupported by employers in their role; and a lack of recognition of their expertise and their knowledge of clients. At the bottom of this cascading series of barriers, inefficiencies, and complexities was the adult with intellectual disability living with dementia, who experienced diagnostic and funding delays; poor quality care and support; and a deterioration in relationships, both therapeutic and with peers. The results of this study demonstrate the complex and multilayered revision that is needed of multiple intersecting policies, systems, and services to ensure quality of life for adults with intellectual disabilities living with dementia, and high-quality therapeutic supports.

Securing a diagnosis of dementia was generally long and difficult but was vital in accessing additional funding for the care and support of adults with intellectual disabilities living with dementia, as well as to adequately compensate disability staff. Establishing cognitive baselines early [30] and using a recurrent screening tool [31] are simple measures that have been shown to address barriers to diagnosis. In addition, a number of screening tools have been developed for use by those without medical training. Screening tools in particular have a number of important benefits. They are a way of ruling out other causes of the changes that have been noticed [30]. They can also help differentiate the various types of dementia, which aids diagnostic precision, informs treatment, assists with the projection of residual life years, and contributes to the accuracy of care management plans. This information is vital to organise staff, determine care, and inform environmental adaptations [31]. Indeed, Chapman, Huma, and Jervis’s service evaluation of a specialist dementia service for adults with intellectual disabilities in England demonstrates the benefits of having a structured screening and assessment pathway, in particular that interventions occurred earlier resulting in a more proactive rather than reactive response to healthcare and support needs [32].

Disability support workers in the study indicated that supporting adults with intellectual disabilities living with dementia was time consuming and stressful, compared with support of other individuals with intellectual disabilities not living with dementia. This finding is echoed in the literature review conducted by Clearly and Doody who found that certain stages of dementia resulted in increased care demands on staff, and even where caregiving responsibilities had not increased, such as in the early stages, staff still experienced a higher emotional toll [33]. Increased care demands and greater emotional labour are also highlighted in a number of more recent studies [23,34,35,36]. Some of the challenges experienced by staff in supporting adults with intellectual disabilities living with dementia relate to the cross over into aged care principles in their work [37]. More specifically Herron, Priest and Read reported that staff in their study found the shift to principles of dementia care from disability support difficult [22]. Given these challenges, the reported lack of dementia specific training reported in this study is particularly troublesome. A number of specific training needs have already been identified to enable the disability workforce to better respond to an ageing population and these include: medical and healthcare training; changes in support needs as a result of ageing; mental health issues; and how to maintain quality of life through ageing [38]. Finally, workforce enhancements are recommended as necessary aspects of national dementia action plans [39].

Participants indicated that supporting adults with intellectual disabilities living with dementia in group homes presented particular challenges, for the individual, housemates, and staff. Housemates can be negatively affected by changes in behaviour related to dementia, and both Pendl, Glatz, and Gasteiger-Klicpera and Ryan, MacHale, and Hickey reported similar issues [23,35]. This need not be the case, however. As early as 2004, Lynggarrd and Alexander undertook work with residents of a group home with housemates with dementia, seeking to better explain dementia behaviour to peers. The study showed that educational interventions such as these in group homes can create positive changes for those affected by dementia and their housemates. Not only can understanding dementia related behaviours cause challenges, but there was a recognition that the increased care demands of dementia, meant that support of the person with dementia and other housemates may both be compromised in a group home setting, particularly where a provider may not have secured additional funding [40]. Sheth similarly found that adults with Down syndrome and dementia reported having to wait for assistance from staff in their group home who were busy and attempting to balance the needs of multiple residents [41].

From this study, it appeared that there had not been any crisis transitions out of accommodation for residents living with dementia. However, there also was little planning around ageing in place and potential moves, despite a recognition that in some instances the group home setting would be unsuitable in the future. Proper planning around housing and changes to living arrangements is key to supporting adults with intellectual disabilities living with dementia to stay in the community while limiting the potential negative impacts to health and well-being of necessary moves [42]. Moreover, dementia-capable living environments have been shown to support ageing in place [20]. There was no systematic approach to assessing housing for dementia-capable living or interventions of this nature. The only mention made was the installation of sensory mats for a client who was having trouble mobilising. Sheth also discusses the impact of environment on the ability of those with intellectual disability and dementia to continue to access and enjoy activities and environments outside the home [41]. This is a particular consideration also for disability service providers who often in conjunction with housing run day and work programs.

Two findings of particular note from the study relate to timely diagnosis and greater disability and dementia education and training; these findings are connected. The current National Plan includes two proposed actions that seek to address these issues broadly, and for the Plan’s nominated priority populations, including people with disability [2]. The need for diagnosis to happen quicker and in a more straightforward manner is addressed through a number of recommendations, including clearer pathways for screening, assessment and diagnosis, and improved support in disability services. In relation to education and training, while there are general recommendations for enhanced dementia-related training for a number of workforces, including the disability sector, more targeted recommendations for dementia training are directed to the aged care workforce only [2]. Given the vital role of disability support workers in noticing initial changes in their clients and then supporting their clients through diagnosis and post-diagnostic care, this would appear to be a significant policy oversight. Moreover, this study and the international literature have found a lack of training and understanding of disability and dementia in the healthcare workforce more generally, and for clinical experts specifically. Diagnosis will continue to be problematic for adults with intellectual disability and dementia, whereas those responsible for this, from GPs to geriatricians and specialist psychiatrists, continue to be unlikely to have the requisite knowledge and experience. Policy recommendations regarding education, training and, consequently, diagnosis must address the current disability and dementia limitations of these key workforces.

5. Conclusions

As the population of adults with intellectual disabilities ages, supporting those living with age-related disease such as dementia will increasingly be a part of the role of disability service providers and their staff, in particular disability support workers. This study suggests that disability services staff are dedicated to supporting their clients’ ageing and facilitating their ageing in place; however, there are a number of service and systemic issues that currently hamper this process. First, most disability support workers receive limited training in supporting those with age-related concerns, even those who do this as part of their role. Further, obstacles to timely and accurate diagnosis of dementia impact the ability of providers to respond to the changing support needs of adults with intellectual disabilities affected by dementia, and consequently, current support for an individual diagnosed with dementia remains unsatisfactory, while also pressuring staff and providers to support clients with limited funding and oftentimes without commensurate remuneration. Third, this study found that ageing in place in group home settings can pose additional challenges regarding managing the needs and support of other residents and of the staff who work there. While this was an exploratory study, the findings would suggest that this is an area of pressing research concern and one that would benefit from additional investigation into the experiences of ageing not just in group homes, but likewise in community settings where living arrangements are more diverse.

6. Strengths and Limitations

This study provides important insight into the experiences of disability services staff supporting adults with intellectual disabilities living with dementia since the introduction of the NDIS in Australia. Moreover, it includes the perspectives of staff in different roles who offer unique insights into this area. While the diversity of roles represented has captured broad and diverse experiences on the topic, the small sample means that the understanding gained around role difference remains superficial. More work is needed that focuses on particular roles, such as disability support workers, with larger samples. The small sample size of the study generally is a limitation. It is, however, reflective of the exploratory nature of the work. While it was important to conduct the study in a way that was as minimally disruptive to participants’ work as possible, it has resulted in relatively short interviews. Longer interviews, which allow for more in-depth exploration of responses, would be beneficial. Lastly, the findings reflect those of paid staff and not adults with intellectual disabilities and family. The inclusion of adults with intellectual disability and dementia in research as participants and researchers is vital for research going forward. It is both an ethical imperative and vital to gaining an understanding of intellectual disability and dementia support in Australia from those who are experiencing it directly.