The main findings from the interview data presented below offer a framework of factors contributing to the use of reablement interventions for people living with dementia within the aged-care sector (Fig. 1). Results are thematically arranged around the research aims, based on the interview schedule and qualitative content analysis.
Aim 1: what reablement interventions are currently being offered to people living with dementia in Australia?
This aim was addressed through three themes generated from the data. Primarily, participants outlined the exercise and cognitive and social reablement programs being offered. Second, the range of terms used to describe reablement services being offered was discussed, and third, participant’s understanding of different staff roles within these services was explored.
What reablement interventions are being offered?
Interviews revealed that a range of reablement interventions are being offered to both people with and without dementia. There were no clear differences in the overall programs provided by small vs large organisations; each offered a range of overlapping programs and strategies that fell into two broad categories: exercise programs and cognitive and social programs.
Exercise
Of the interventions involving exercise, only a few organisations reported using evidence-based programs (and these were mostly for fall prevention) such as the LiFE functional exercise program [24], Stepping On fall prevention program [25], and the Otago exercise program [26, 27].
“we’re trying to adapt some of those programs, so the Otago, probably basing a lot of, well I know my work personally I’m basing a lot of it on that program because it can be delivered I guess in different ways as well, and it just gives a good outline of the exercises that we use to get some improvement or to reduce the incidence of falls” (ID-17; AH,DS,L,R/M,NFP).
“the LiFE program which is an exercise program based on daily activity … so building into someone’s daily activities … around falls prevention … we’d also use the Otago as well” (ID-8; Mx/AH,G,S,M,NFP).
The majority of participants discussed using exercise but were vague regarding whether the programs were based on research protocols. For example, participants made reference to home exercise programs, exercise classes, falls and mobility, having an on-site gym, tai-chi, Pilates and yoga, and walking programs.
“in the community the carers have been through an exercise program, so if they’re out there doing the cleaning they’ll be getting the person they’re doing the cleaning for to help them as part of an exercise routine” (ID-2b; MX,DS,S,M,NFP).
“rather than do formal exercise we’ll do things that mean we’re doing bowling or bowls or something that means people have got to get up and walk around and use, get out of their chairs basically … and we dance. So it’s more about informal exercise rather than formal exercise” (ID-10; Mx/AH,DS,S,M,Gov).
Cognitive and social interventions
Of the cognitive and social programs, cognitive stimulation therapy [28, 29] and using a Montessori approach [30] were the only programs discussed that may have been generated from an evidence-based protocol. However it remained unclear if each organisation that reported using these approaches were actually following the research protocol or if they had developed their own protocol.
“we have the cognitive stimulation program … they’re not big groups … we have clients who … have indicated for example just off the top of my head have indicated a real passion for cars. So then that group will come together and it will be like a discussion group but the focus will be a series of cards to trigger their memory around oh, what was this car, does anyone remember what this car was, oh what did it involve? Did you ever drive one like that? So it’s about triggering their memory and encouraging, maximising their memory around their passion” (ID-6; Mx/AH,DS,S,M,NFP).
“They have run particular programmes around cognitive stimulation and the staff have all been trained in maintenance for that as well, they use a Montessori approach in the daily programming” (ID-20a; Mx/AH,G,S,M,Gov).
A range of other cognitive and social programs were reported across the interviews, however the origin of these remained unclear. Identified programs and activities included good/positive thinking groups, arts programs, music programs, activities programs, outings groups, lifestyle programs, cooking and gardening, class groups and games, active minds and wellbeing groups, structured social activities, and a memory support unit. There was a lack of programs specifically addressing everyday functional ability and independence. References to these outcomes were more general and often intertwined with comments around exercise or cognitive and social programs, or limited to discussion around the role of occupational therapy.
“trying to build that functional capacity as well by improving people’s strength and balance” (ID-17; AH,DS,L,R/M,NFP).
“assisted technology … establishment of very clear routines, and providing that person with the necessary equipment that they might need” (ID-13; AH,G,S,R,P).
There was a general lack of clarity around the basis of a majority of the reablement interventions that participants reported as being on offer in their services.
What’s in a name?
A similar understanding around a range of specific terms being used in the sector was expressed by both allied health and management. The most common term participants reported using in their organisation that related to regaining or maintaining functional performance in people with dementia was ‘reablement’, followed by ‘restorative care’, ‘wellness’, ‘rehabilitation’, and ‘functional ability’. The terms being used were driven by different factors, including: government policy, such as documents that guide home support services [3], the geographic location of the organisation, and the values that respondents placed on the terms. For instance, a term may not be seen as relevant to a particular service, or may be associated with a negative connotation.
“With the changes in the aged care reforms, and the new guidelines, reablement and wellness have almost become buzz words” (ID-20a; Mx/AH,G,S,M,Gov).
“I don’t think we’ve done that much on restorative care per se” (ID-14; MX,G,S,M,NFP).
“rehab to a certain extent has got a negative connotation because you talk about rehab, people think about drugs and alcohol rehab”. (ID-2b; Mx,DS,S,M,NFP).
Overall, there was confusion around the understanding and meaning of these terms, with participants offering variable definitions and citing difficulty in differentiating between terms.
“people are still trying to get their heads around what these terms mean, and how they apply in their community” (ID-11; Mx,G,S,R,NFP).
“a lot of the stuff we do we call it wellness, we branch it under wellness a lot but when you break it down I can see that it was restorative or reablement or it was a different approach” (ID-18; Mx/AH,DS,L,R/M,NFP).
“it’s so difficult, reablement, restorative care, rehabilitation, they’re kind of all, they’ve become quite interchangeable I think” (ID-20b; Mx/AH,G,S,M,Gov).
Despite a range of terms being used, participants identified general similarities across the approaches, with particular focus of building on intrinsic capacity and maximising function.
Whose role is it?
The role of different professional groups in reablement interventions supporting people with dementia to maintain or improve their functional ability and independence was explored. Respondents expressed similar understanding around the roles of different health professionals. Key staff in the maintenance or improvement of functional ability and independence were identified as occupational therapists, whose goal was highlighted as keeping people independent and at home, and physiotherapists, whose goal was understood to be around physical function.
“I don’t know how you can do best practice dementia care without an OT [occupational therapist] personally” (ID-7; AH,DS,L,R/M,NFP).
“it’s a bit like a car, the physiotherapist is the mechanic who repairs the car but the occupational therapist is the driver, test drives it to ensure that the repairs have been done” (ID-6; Mx/AH,DS,S,M,NFP).
In contrast, exercise physiologists were less commonly used across the organisations, and there tended to be some confusion around the difference between their role and physiotherapy. There was some uncertainty as to the roles of other members on the team in general. For example, when asked about what occupational therapy programs were available in their organisation, there was uncertainty from both management “I don’t know them. I’m not that close to the on-the-ground staff in that sense” (ID-12; Mx,DS,L,R/M,NFP), and from other clinicians “I really don’t even know what half the people in the health care team do” (ID-21b; AH,DS,L,R/M,NFP). A number of interviewees indicated they believe an overlap exists between all of the health roles. For example, in regards to home assessments, one respondent stated that “the physios can do some of that as well” (ID-11; Mx,G,S,R,NFP), while another reported that their exercise classes were “run by an OT” (ID-18; Mx/AH,DS,L,R/M,NFP).
When asked about other professions that may have an important role in maintaining or improving function in people living with dementia, a range of other roles were identified. The most frequently cited across the interviews were care support workers, who were seen as crucial to providing consistent, on-the-ground support for people living with dementia. The role of support workers in implementing reablement interventions in collaboration with allied health professionals was also highlighted.
“our carers out in the community, they’ve got a really important role because they see our members [ie. clients] every day … recognising change in our members, recognise decline or recognising areas that they need support in” (ID-18; Mx/AH,DS,L,R/M,NFP).
“if there’s an active program there’s usually an OT component to it, but certainly the maintenance is the program staff doing that” (ID-20a; Mx/AH,G,S,M,Gov).
Management was also seen as important in terms of planning client services and to “provide leadership to the care staff so that they can embrace the reablement and restorative rehab model” (ID-6; Mx/AH,DS,S,M,NFP). Other roles identified as playing an important role in reablement for people living with dementia were: nurses, therapy assistants, podiatrists, speech pathologists, social workers, dieticians, psychologists, and general practitioners or geriatricians.
Aim 2: what are key factors that will contribute to enhanced uptake of reablement interventions in dementia practice
Aim two was addressed through one over-arching theme exploring the perceived barriers and enablers to providing reablement to people living with dementia. Participants described a range of factors that both hinder and support current reablement practice.
Perceived barriers to providing reablement to people living with dementia
Funding
Participants saw a number of factors contributing as barriers to implementing more reablement interventions for people living with dementia. The most frequently cited barrier was around funding. Participants felt that there was “a lack of [government funded] packages” (ID-7; AH,DS,L,R/M,NFP), that funding was not flexible enough to allow for increased time and unique challenges that arise when working with people living with dementia, and there was no funding allocated for appropriate training of care staff in delivering reablement interventions.
“part of the issue is time and money because rather than spending half an hour doing a quick shower with somebody, you’ve got to be there for an hour building the relationship and of course you have to pay for an hour’s care rather than half an hour’s care” (ID-21a; AH,DS,L,R/M,NFP).
For people with dementia residing in aged care facilities, the current Australian residential funding model was viewed as a disincentive to delivering reablement interventions. Participants cited that the Government funding model “is based on dependence” (ID-2a; Mx,DS,S,M,NFP) and “doesn’t actually encourage reablement” (ID-6; Mx/AH,DS,S,M,NFP). Within the community sector, the new Consumer Directed Care model that provides consumers with greater control over their personally allocated funding to access services and care (Ottman et al. 2013) was reported as difficult to navigate and that “people are so confused by the system” (ID-11; Mx,G,S,R,NFP), with clients unsure of how they could use their allocated funds.
Stigma
Barriers to clients accessing reablement interventions were reported as being broader than just being related to confusion around funding. Participants reported that “stigma of dementia” (ID-1; Mx,DS,L,R/M,NFP) and the “initial fear by clients and cares about accessing services to support them” (ID-5; Mx,DS,L,R/M,NFP) was felt amongst people living in the community, and that was limiting their access to reablement interventions that may support their function.
Organisational limitations
From within organisations, barriers to implementation of reablement interventions were identified as having staff not specifically trained in dementia care, high rates of staff turnover, and issues associated with geographical remoteness. While the majority of services in the sample were in metropolitan areas, or were headquartered in metropolitan areas with some regional/remote branches, two organisations were entirely located in regional/remote areas. The different barriers which arose for these services were around long “wait time” (ID-1; Mx,DS,L,R/M,NFP) for services, or economies of scale, such as “you have people who live out of town, so geographical distance to do that visit ….” (ID-13; AH,G,S,R,P) or
“programs are generally pitched to a certain number of people attending … what happens if you only have two people, you know, how do you make it pay … the reality is they’re probably not going to get it” (ID-11; Mx,G,S,R,NFP).
External limitations
Finally, challenges were raised around working with external referring organisations, such as the Regional Assessment Service (RAS) and general practitioners who were cited as having limitations “in terms of knowing that these services we provide would be suitable as a reablement type service for someone with mild to moderate dementia” (ID-5; Mx,DS,L,R/M,NFP). Further, greater de-regulation and competition within the aged care sector, such as the new Consumer Directed Care model, was described as having negatively impacted inter-organisational collaborations.
“the collaboration is not there … it’s become more competitive, and so there’s not as much … the willingness to work with each other is not as great as what it used to be” (ID-6; Mx/AH,DS,S,M,NFP).
Perceived enablers to providing reablement to people living with dementia
Organisational support
In contrast, participants also discussed factors they saw as enabling, or supportive to their provision of reablement interventions to people living with dementia. Within organisations, having “an organisation that is committed” (ID-18; Mx/AH,DS,L,R/M,NFP) from the top-down to providing reablement interventions to clients with dementia, management that provides leadership in the reablement approach and care workers who are supported in their approach to care was seen as important.
“trust in your staff with the management to be able to react to the things that they say and do, and the outcomes that they celebrate … when the support worker comes back with really good reablement or wellness initiatives, we celebrate that too and share it with other staff members who also get, I suppose, buoyed from the fact that they’re much more valued out there as support workers” (ID-4; Mx,G,S,M,NFP).
Offering dementia-specific services
Initially there were some differences in opinion around the provision of dementia-specific versus general services for people living with dementia. Some respondents commented that offering the same approach for all clients was best, e.g. “Whether you’ve got dementia or not is not an issue” (ID-11; Mx,G,S,R,NFP), and “I don’t like to label people with dementia … they are an independent person that needs support” (ID-4; Mx,G,S,M,NFP).
However, when later asked what factors would support the provision of services to promote functional ability in people living with dementia, the concept of more dementia-specific services and approaches was highlighted as important. Key factors identified included adapting programs or the approach to care to fit with the needs of people living with dementia, having a dementia-specific focus from the organisational perspective, and having staff specifically trained in dementia.
“ensure that we adapt the programs so we will deliver services that are appropriate for people with cognitive loss and for people with dementia” (ID-8; Mx/AH,G,S,M,NFP).
“right from the top; so the board are committed, the CEOs are committed to being a dementia-friendly organisation” (ID-18; Mx/AH,DS,L,R/M,NFP).
“having a nurse practitioner of dementia care to champion it a bit more in our organisation is a really positive way forward” (ID-5; Mx,DS L,R/M,NFP).
Following these identified benefits, a number (n = 9) of both large and small dementia-specific organisations reported to “provide training to our care workers and [/or] all of our staff” (ID-3; Mx,DS,L,R/M,NFP) on dementia.
Skilled staff
Having a team environment with skilled staff working together was also seen as supportive; particularly when allied health staff worked closely with the support workers, and when an organisation had dementia-specific staff roles to guide the team in their approach to services.
“taken the OT out of the office and onto the floor to be mentoring and validating and valuing of staff who are doing the frontline care in role modelling individual as care into practice” (ID-7; AH,DS,L,R/M,NFP).
Participants also raised strategies they employ that support them in providing reablement interventions. These included working in collaboration and “partnerships with families” (ID-7; AH,DS,L,R/M,NFP), employing “thought outside the square” (ID-1; Mx,DS,L,R/M,NFP) and flexibility around the way they provide their services, and ensuring to “work with our staff” (ID-18; Mx/AH,DS,L,R/M,NFP) for support, training and engagement.
External factors
A number of supporting factors that were external to their organisation were also discussed. These included recommending clients take advantage of externally run programs and services, such as free community groups, with one respondent commenting “I don’t even think there is a cost to those, so they’re wonderful” (ID-3; Mx,DS,L,R/M,NFP), and external expertise such as a “dementia link support worker” (ID-11; Mx,G,S,R,NFP). Many of the participant’s organisations were taking advantage of the education services and resources provided by the various Dementia Australia (formerly Alzheimer’s Australia) chapters. Finally, some organisations were implementing alternative approaches to providing more reablement interventions, such as “collaboration with other organisations …. organisations linking into our strengths, and visa versa” (ID-6; Mx/AH,DS,S,M,NFP), or working with research teams.
“our research and development unit is really good at trying to run programs with students … so that’s a big facilitator for us where we can have students, student-led programs or even research programs that are helping our clients to deliver more services” (ID-17; AH,DS,L,R/M,NFP).
Overall, a range of barriers and enablers to providing reablement interventions for people living with dementia were discussed, highlighting the complex interplay of contributing factors to effective delivery.