Mind the gap: Comparing perspectives of service providers to the needs of people with dementia living in the community

Abstract

Introduction

Research with West Australian people with dementia and their carers living in the community identified that they have a diverse range of needs. However, little is known about the needs of people with dementia and their carers from the perspectives of service providers who provide formal support. This study aimed to investigate the needs of people with dementia and their carers living in the community from the perspectives of service providers, and compare this to service recipients.

Method

This interpretive descriptive study used focus groups to collect qualitative data from service providers (N = 10). Data were analysed using a hybrid inductive–deductive approach to compare the needs identified by service providers to those identified by people with dementia and their carers.

Results

Three major themes were identified: (i) services and supports required by people with dementia and their carers should be flexible, tailored, and equitable; (ii) building capacity to support carers and people with dementia; and (iii) systems designed to care were fragmented and difficult to navigate. Service providers prioritise needs that are limited to their current capacity to provide in contrast to the holistic needs of people with dementia and their carers.

Conclusion

There was poor alignment between the perceived needs of people with dementia and their carers and the needs prioritised by service providers in the West Australian community. This gap may reduce the ability of services to effectively support people with dementia to remain living in the community.

Keywords

dementia community services interpretive description aged care Australia service providers

Background

The prevalence of dementia among Australians is estimated to be 447,115 (National Centre for Social and Economic Modelling, 2019). Future projections indicate the prevalence will potentially double by 2036 and almost triple by 2056 (Brown & Hansnata, 2017). A range of services are available for people with dementia living in the community in Western Australia (WA) under three separate funding systems: the Commonwealth Home Support Programme, Home Care Packages, and Veterans’ Home Care (Productivity Commission, 2018). These systems provide funds for direct community services such as domestic assistance and respite, assessment, information about service pathways and care strategies, residential respite, and ongoing coordination of care for individuals and their families (Productivity Commission, 2018).

Alzheimer’s Australia’s report into consumer engagement in the aged care reform process highlighted ‘a need for services that meet [carer and people with dementia] needs rather than the needs of the service providers’ (Alzheimer’s Australia, 2011, p. 8). Needs related to services designed to support people with dementia living in the community include services that focus on the person—not the task, have open communication, and are accessible (Grenade & Walker, 2005; Raivio, Laakkonen, & Pitkala, 2011; Ward-Griffin et al., 2012). Highly desirable characteristics of dementia care services, such as availability of hours, continuity of services, and affordability of services, are determined by the funding models (Phillipson & Jones, 2011; Raivio et al., 2011). That said, the attitudes of service providers and policy-makers have been described as ‘inconsiderate behaviour, especially taking into account that these caregivers are elderly, stressed, and unable to defend themselves’ (Raivio et al., 2011, p. 6).

Few studies have evaluated services for people with dementia and their carers living in the community in WA. Downes (2013), Hancock and Jarvis (2005) and Grenade and Walker (2005) evaluated services and programmes provided in the WA community and found pockets of good practice. More broadly, access to respite in Australia is limited by inflexibility and inaccessibility of services, and concerns regarding the well-being or safety of the person with dementia (Tang, Ryburn, Doyle, & Wells, 2011). To understand the experience of accessing and using community services, the authors conducted qualitative research with people with dementia and their spousal carers in WA. Three themes identified that people with dementia and their spousal carers needed the following: an enabling environment (including social, institutional and physical), to develop and maintain strong caring relationships, and to plan ways to maintain their daily life.

Service providers have a unique perspective (Danaher & Gallan, 2016) when addressing the needs of people living with dementia in the community because their purpose is to provide relevant services designed based on population needs (Ward-Griffin et al., 2012). Service providers are limited in the type and number of support services they are able to implement, by a lack of flexibility to accommodate the needs of a heterogeneous population (Ward-Griffin et al., 2012) or ineffective assessment of the needs perceived by people living with dementia (Stirling et al., 2010). It is important to explore the unique perspectives of service providers to understand systemic responses to the needs of people with dementia and their carers. The aim of this study was to explore the responses of community service providers to the needs of people with dementia and their carers, and to identify barriers and enablers to improving service providers’ responsiveness.

Methods

Study design

In a previous study of people with dementia and spousal carers, an interpretive description (Hunt, 2009) method was used as a co-constructive approach to identify the needs of people with dementia and their spousal carers living in the community. Interpretive description recognises the impact of shared experience and acknowledges the contextual and constructed nature of ill health (Thorne, Kirkham, & MacDonald-Emes, 1997). Ten spousal couples of carer and person with dementia participated in dyadic, semi-structured qualitative interviews. Participants in the previous study were purposively sampled to identify the needs of people with dementia and their spousal carers at different stages of the progression of dementia. Interviews were audio-recorded and transcripts analysed using qualitative thematic analysis (Braun & Clarke, 2006) to identify provisional themes. These themes were refined using two focus groups of spousal carers (N = 10). Three themes were identified: (1) environmental enablers to support care, (2) strong caring relationships and (3) adaptation of life roles.

These themes were used to develop a semi-structured interview guide for use with WA service providers’ within the same community of metropolitan Perth, WA. This study was approved by the University Human Research Ethics Committee (HR111/2013).

Participants

The study was advertised via email to dementia assessment agencies and direct dementia care providers in metropolitan Perth, WA. Health professionals were eligible to participate if they were currently working with people with dementia living in the community in WA and were responsible for assessment, service provision or support for people with dementia. Health professionals who worked primarily in residential aged care services were excluded. Participants responded via email and provided signed informed consent prior to participating in interviews, and all respondents met the inclusion criteria. All participants (N = 10) were female and from a range of backgrounds including three care coordinators, two occupational therapists, two social workers, two registered nurses, and one counsellor. Participants were employed by four service providers and worked in various roles including day-therapy unit work, assessment services, memory clinic, respite provider, counselling, and education.

Procedure

The interview schedule was based on the key needs previously identified by people with dementia and their spousal carers (see Figure 1). Semi-structured interviews were conducted with participants at their place of employment. The interviewer (first author) has five years’ experience working in community services for older adults. Participants were interviewed individually, in dyads, or in small groups of no more than four people based on the number of respondents from each organisation. Variation in interview styles occurred due to the types of pragmatic issues discussed by Lambert and Loiselle (2008); however, the impact of context and shared experience is of principle interest within interpretive description, and, as such, the data collection procedure supported the methodology. Each interview lasted approximately 60 min, and all interviews were audio-recorded and transcribed verbatim. Observational field notes were made during the interview process and were included in the analysis.

Data analysis

Data were analysed using a hybrid inductive–deductive approach, based on Braun and Clarke’s six-stage thematic analysis, and in combination with Crabtree and Miller’s a priori code manual strategy (Crabtree & Miller, 2012). Inductive analysis was completed by the first author prior to the deductive analysis to reduce the impact of prior knowledge on this process (Braun & Clarke, 2012).

Transcriptions were managed using NVivo (QSR International, version 11). The first few interviews were analysed using continuous, inductive analysis to identify the main themes (Hunt, 2009). Themes were cross-checked with field notes for confirmation or consideration of alternative interpretations. Data collection continued until saturation of themes had been achieved. Transcripts were reviewed line by line by the first and third authors, and statements relevant to the study aim were identified. Eighteen basic codes were identified and organised into three global themes (see Figure 2). Analysis was a continuous iterative process throughout data collection to allow successive interviews to saturate themes. Early interviews were re-analysed to ensure developed codes were upheld (Braun & Clarke, 2006). A deductive approach was then used to enable comparison of the service providers’ perspectives with the needs identified by people with dementia and their spousal carers. Themes previously developed from interviews with spousal carers and people with dementia were developed into a code book, which defined the theme and described how to know when the theme has occurred (Fereday & Muir-Cochrane, 2006) (see Figure 3 for an example).

Results

Inductive analysis

Three major themes were identified from the interview data: (1) services and supports required by people with dementia and their carers should be flexible, tailored, and equitable; (2) building capacity to support carers and people with dementia; and (3) systems designed to care are fragmented and difficult to navigate.

Services and supports required by people with dementia and their carers should be tailored, flexible and equitable

Respite was the most common type of service need that service providers identified. In-home respite was seen to provide people with dementia with opportunities to do the following: engage meaningfully in occupations that were relevant to them; continue a community activity, like shopping or socialising with others; and develop new skills, ‘Or even, like they go to the Men’s Shed, but they want to go to the Men’s Shed, not because that’s what’s scheduled for that day.’ (Participant 4)

Participants believed carers and people with dementia had a need for access to comprehensive and ongoing support mechanisms to help them navigate the complexities of caring for people with dementia and accessing services. The need to tailor services as the disease progressed was identified as an important issue. Eight participants identified the timing of services and development of strong caring relationships were underpinned by effective, ongoing and comprehensive support that was generally referred to as a case management approach. These issues were described by one case manager (also known as a key worker): ‘it could almost be, like, a distant monitoring-type system. Like, somehow flagging more involvement from the relative services or systems around as things change for people, and getting them linked in with those’ (Participant 7). Participants identified a lack of ongoing support for people with dementia and their carers, limited knowledge about services and breakdowns in communication between services resulted in consumers not transitioning effectively between service types.

Names of service types were perceived by participants as holding significance for people with dementia and their carers. For instance, participants identified that ‘personal care’ for instance was perceived as labelling dependence, more so than ‘social support’. The timing and type of the service first offered was considered very important. Introducing respite or social support first was preferable as it was considered less intimate or confronting than personal care. Participants reported learning this from past experiences of having introduced a service or formal assessment too early, which resulted in the person with dementia or carer rejecting the service:

I’ve had a client [person with dementia] just recently try respite for the first time. He did a three-day respite, which was very hard for her [carer], and she was a mess beforehand. He had a fine time, it was fine, but when he came out he was like, ‘Yeah, I’d rather be with you.’ So now she doesn't want to do it again, even though it’s beneficial [for her]. (Participant 5)

Participants identified respite as a core service for carers, more so than home cleaning or personal care, because respite provided carers the opportunity to have a break from their carer role and participate in their own meaningful occupations. As people with dementia experience a greater number of physical needs over time, packaged funds were devoted exclusively for personal care, other self-care tasks, or home cleaning. This resulted in insufficient funding to support ongoing engagement of people with dementia in meaningful activities, with some providers stating that it was expected that carers would assume this role.

Flexibility was a core feature that facilitated people with dementia and carers to use respite services. Depending on the type of respite, this flexibility included availability of specific days or times, and the ability to book services at late notice. Participants articulated concerns about the paucity of short-term or overnight respite services. Three participants stated that it was very difficult to locate or book short-term respite services (i.e. 2–3 days), and that many facilities that formerly provided overnight respite were being closed. Additionally, participants noted that support previously available to assist carers to arrange funding and booking of residential respite had become limited, and now was restricted to only providing funding. Participants reported that no official services were available to replace this booking service and that carers now had to assume this additional responsibility.

All participants identified flexible and personalised or tailored care was easiest to provide when the service delivery model focussed on relationships rather than discrete tasks. This was best facilitated by having consistent staff working with each person with dementia:

Some organisations do it better than others, but one of the biggest issues with families is that they have problems getting consistent care workers, and for people with dementia, the vast majority of them benefit from having consistent care workers who they’re able to build up a rapport with, who they begin to trust, who get to know them …the other family member isn’t having to explain everything each time a service happens, to start things up again. (Participant 2)

Equity of access to quality assessment and community services was a concern raised by five participants. Service providers were concerned that it was just someone’s ‘good fortune’ that determined if the medical specialist and general practitioners (GP) that were involved in the diagnostic process were experienced and understood dementia. This ‘good fortune’ impacted the timing and accuracy of diagnosis, to whom referrals (if any) were made and access to medication or clinical trials for people with dementia.

Participants gave a critical summary of the variability in services, policies and procedures they were aware of in the WA community. For instance, some organisations used volunteers effectively to increase the number of service hours provided, which made their services better able to meet the needs of people with dementia and carers. This was also summarised by participants’ comments related to organisational policies, such as mandatory staff rotation between clients:

I think that’s part of the challenge is that, you could have two people who are fairly similar in progression of their dementia and their needs, for instance, if you go to one service provider you might get this, if you go to another service provider you might get this. And it’s trying to navigate the quality or equity. (Participant 9)

Building capacity to support carers and people with dementia

Participants commonly identified how carers, people with dementia, and the general public had a limited understanding of dementia. This was attributed to stigma about dementia, lack of available education, and fear of what might happen as a consequence of the diagnosis.

Probably the biggest thing is, is there a knowledge deficit about dementia? Because many people feel as though …‘Mum’s doing this on purpose’. So, then I start thinking, well, we need to improve. If it was some exotic disease, we’d be on the Internet, Googling, what is it about dementia? (Participant 1)

Lack of knowledge and understanding about dementia, and the services and supports available, affected the ability of people with dementia and their carers to seek help when necessary. This led to delays in accessing services, overreliance on external support/services, and, at times, inappropriate admission to residential care or hospital. Lack of knowledge was also identified as a cause of fear and uncertainty for people with dementia and carers. Participants identified that some people with dementia and their families did not plan appropriately or responsibly for the future (e.g. no wills or arrangements pertaining to guardianship and enduring powers of attorney).

Participants perceived that the control and sense of power people with dementia and their carers experienced were reduced by the systems designed to support them. Participants believed that people with dementia faced continued loss or restriction of choice in how they lived their lives, and this was, at times, a result of how services were delivered:

[Participant speaking from the perspective of a person with dementia] I mean, I’ve got dementia so I’m not sure about what’s happening anyway, in any way shape or form with myself, and I don't know what this means to me about having a person visit me, you know, ‘Am I going to like this person? Are they ...because they’re going to take away some of my independence’. (Participant 3)

Participants identified the critical role carers had in developing coping strategies that impacted independence, and choice and control of the person with dementia.

I’ll go out and say, ‘So how’s things going?’ and they’re like, ‘Oh, it’s great. He still does the dishes. Yeah. He does it slower and it’s not quite as great, but he still does the dishes. He still can do the washing machine. It’s great. I’m happy. Everything’s fine’. (Participant 4)

Coping strategies, both effective and ineffective, were identified as developing organically with the progression of dementia; however, ineffective coping strategies were linked to early admission to residential care.

The attitudes of carers and people with dementia shaped the spousal relationship. Four participants reported that some carers managed well the transition of identity and role but believed that others could no longer view the spousal relationship as reciprocal, and instead became a carer and a person with dementia. This was evident when carers introduced themselves, “when they stop referring to themselves as, ‘Oh hi, I’m Bob’, but, ‘I’m so-and-so’s carer” (Participant 4). Issues were also identified in the maintenance and adaptation of relationships, particularly spousal, but also other care relationships. Intimacy, role boundaries, and reciprocity of love and affection affected the quality of the relationship, as well as the ability of the carer to continue providing support. Participants recognised that the carer’s fear of failing the person with dementia led to their feelings of guilt, particularly related to accepting services.

Participants reported wide variation in the nature of support provided by extended families and community supports such as neighbours and friends. Service providers reported this informal support was highly inconsistent because of different employment patterns among carers (e.g. full-time vs. retired), changing family structures, and lack of knowledge and understanding of dementia in the general community.

Appropriate communication skills were identified as essential to support a person with dementia in the community. Service providers recognised the difficulties and fears experienced by people with dementia and their carers in communicating needs to one another, particularly around difficult topics such as accepting services.

Another area that we peddle a lot of is communication strategies, the road rules for communication, just to use as a springboard to their own ideas, but to know they’re on the right track. And then, often that is the conduit into getting other things done. Oh, well, that worked well, then I’ll try this. And then, that communication strategies often do get respite booked (Participant 1)

Participants strongly recommended education about communication strategies for carers and people with dementia, and identified that some carers coped by relying on service providers to deliver information to the person with dementia, in the belief that their professional communication skills and overall knowledge was superior to their own.

Systems designed to care are fragmented and difficult to navigate

Difficulty accessing appropriate services, limited knowledge and expertise of service providers, and a highly complex system of care were identified as major sources of frustration and harm for people with dementia, their carers and service providers.

Participants expressed frustration that lack of funding limited services that could be delivered and thereby restricted their ability to meet the needs of people with dementia and carers. An inability to follow-up effectively, to provide services to clients across broader geographic area and to provide holistic services from within the one organisation were identified as frustrations and restrictions in the delivery of quality care. Participants reported that the primary focus of services needed to be on personal hygiene or managing medications for people with dementia and limited funding restricted access to meaningful activities that might improve quality of life.

The development of services that reduce the complexity of support systems for people with dementia and carers was a key issue reported by eight participants. Service providers had a long list of ideal supports and services that could be offered; however, funding restrictions and attitudinal beliefs amongst health professionals created persistent barriers:

I even had that too, from a very well-known [medical] consultant, you know, I said, ‘Look, there’s lots of things that we could introduce for this person, strategies’. [The consultant said] ‘Well, what’s the point? The condition’s going to change anyway.’ I said, ‘Yes, but they’re in the early phases’, I said, ‘We could be working with them and their family on their calendar systems, a whole manner of [options].’ (Participant 7)

Education of carers on an ‘as-needed’ basis was not possible due to limitations in time frames for service delivery, ‘I mean, we could try to provide education in that context, but that’s not the context that we’re there for… difficult when we’re only there for an hour, and you know, we’re trying to review their entire function, you know?’ (Participant 7)

Participants recognised the contribution of families in providing care as another reason why people with dementia and their carers may not pay for additional formal support services, ‘But very often, people don’t want to spend money if they don’t really feel that there’s a need to. So, you’re overcoming a few different barriers to try and achieve that’. (Participant 2)

Participants were forthright about the lack of knowledge of dementia among professionals and support workers:

A lack of training, lack of knowledge as well. Like even some of the support workers that I’ve got for some of my guys through different organisations; they’re wonderful, absolutely wonderful people, but their awareness of, I guess, the difficulties that someone with dementia faces is just ... it’s not enough. You need more than just an understanding, ‘Oh well, this person has dementia’. You need to know.... (Participant 1)

The aged care services system in Australia at the time of this study was in transition from packaged care determined by the service provider, towards more flexible, consumer directed care (CDC) packages. This transition of systems was perceived as difficult to navigate for services providers and referrers, as well as for people with dementia and their carers. Service providers were uncertain of their ability to refer to key agencies such as the Aged Care Assessment Team (ACAT), ‘I think, sometimes, they have a feeling that they can’t refer people to us, that it has to go through the GP. Sometimes I just think … like, I’ve spoken to a service provider recently, and they said, “We’ve been trying for months to get this referral to ACAT”, and I’m thinking, “why didn’t you ring ACAT?”’ (Participant 9)

Deductive analysis

Three themes of need identified from the data obtained from people with dementia and spousal carers were (1) environmental enablers to support care, (2) strong caring relationships and (3) adaptation of life roles by spousal carers and people with dementia, to which service providers responded. Participants in the current study focussed primarily on institutional support in comparison to all other themes combined (see Table 1).

Table 1.

Cross-case analysis of service provider data with needs identified by people with dementia and spousal carers.

Themes	Participant number
Themes	1	2	3	4	5	6	7	8	9	10	Total
Environment
Social	3	2	1	5	2	3	6	6	9	2	39
Institutional	26	28	16	41	11	31	28	24	26	14	245
Physical	3	0	0	4	0	1	3	4	3	1	19
Caring relationship	1	3	3	16	4	9	2	5	5	1	49
Maintaining daily occupations	3	1	3	9	2	4	3	1	1	1	28
Total	36	34	23	75	19	48	42	40	44	19	380

Environment

A social environment that is supportive and well-educated

This theme was described in terms of supportive available and expectations on families to fill the gaps: ‘I know there are carer groups out there but it’s quite a daunting experience, you’d probably want to do that with somebody else. You would have done that with your wife or husband and now there’s nobody to do that with. You’ve got to do it yourself, so they don’t, that’s what we tend to find’ (Participant 10). Knowledge about dementia within social networks, including family and social support for carers, were each mentioned by only two participants. Stigma about dementia was described once; however, that was in relation to people accessing support services from Alzheimer’s WA (due to the name being specific to Alzheimer’s and not inclusive of all forms of dementia).

Institutional support that is timely, effective and affordable

All participants described barriers to service provision and areas where services needed to improve. Service providers required a broad range of education to equip them to support people throughout the dementia continuum; for instance, developing a basic understanding of dementia through to manual handling techniques and communication strategies: ‘Some people, you can tell the difference between those who have accessed information, and those who have attended anything that’s formal education. Not a lot of the carers I see have accessed formal education’ (Participant 1). A similar range of education needs was suggested for health professionals, GPs, care coordinators and assessors, with a particular focus on maintaining contemporary knowledge of services and supports.

Limitations in the pathways that people with dementia could follow to access to services was identified as a need by most participants. Participants reported inconsistent pathways to care, which meant that some people with dementia and their carers only accessed services in a crisis, and there was unnecessary confusion for many carers, ‘I guess some of these people that we see, they don’t go to the GP very often, or some of them don’t even have a GP, so they kind of just … fall through the cracks’ (Participant 8). The importance of timing when introducing services was discussed, ‘you either get them way too early and they don't want a bar of you [want nothing to do with the service]… Too late and they’re in crisis and they need it now’ (Participant 4).

Participants identified that carers experienced barriers to accessing services due to the complicated structure of the care services system:

I was talking to a gentleman the other day and he said, ‘Oh, it is just so nice to be able to speak to somebody about everything that’s bothering me.’ He said, ‘You know, I’ve tried this organisation, and they could tell me this, but not that, and they told me to phone so-and-so, who could tell me that, but not this, and they told me to phone another organisation’ (Participant 1)

The cost of services was a further challenge to accessing the appropriate level of services, and carers often did not have sufficient information about fee waivers.

A safe home and community

Four service providers expressed their desire to do more to promote a supportive physical environment at home. Two participants who talked about the Dementia Enabling Environment Project saw the need to make the home environment more accessible, e.g. signage, lighting and visual access. However, limited funding constrained the role of occupational therapy in environmental modification to improve function as described by Participant 6.

In my role I want to be able to go out into someone’s home and say, ‘Yeah, you do need a raised toilet seat.’ … and then follow that through, so it’s not just me going, ‘I’ll give someone a call and then they’ll call, and then they’ll call you, and someone will come out and see you.’

Developing and maintaining strong, caring relationships

Planning respite, and providing education and counselling to informal carers about the need to access services in a planned way were identified by most participants as being important to supporting people with dementia and carers to maintain strong relationships. Participants described conflicting demands when meeting the needs of people with dementia and of their carers, particularly when working with spousal carers:

We allow them the opportunity to discuss things separately, because often, you know, we see the person with the spouse, but we need to make sure that we can separate at some stage, so they can really talk openly about what’s going on. (Participant 7)

Spousal intimacy was identified as a need by two participants. Participants considered their role was to promote stronger relationships between carers and people with dementia and support other formal care providers to consider the impact of caring on spousal relationships.

The future of daily life for people with dementia and carers

All participants recognised a need to provide opportunities for people with dementia to engage and participate in socially valued life roles. ‘For some people, they just want to be able to go to the local shop, and have a coffee …And if they look in the shop, they’ll be able to buy a gift for a grandchild, all those sorts of things. They don’t want to sit and play bingo’ (Participant 7). Participants identified the importance of implementing services to support carers’ needs to engage in other meaningful activities, such as looking after grandchildren. Two participants identified the important part of their role included supporting carers and people with dementia to develop skills to work together, and to adapt to changes in functional performance related to the progression of dementia.

Discussion

This study identified that service providers have a more narrow perspective of what is needed by people with dementia and spousal carers living in the WA community than those living with dementia. Service providers reported that restrictions in funding and service types affected the amount and scope of support they could provide. Knowledge, accessibility and availability of education for all stakeholders were essential for meeting the needs of people with dementia and their carers.

Service providers’ abilities to assess accurately and without bias the needs of people with dementia and spousal carers are challenging (Bangerter, Griffin, Zarit, & Havyer, 2017). Research by Miranda-Castillo, Woods, and Orrell (2013) identified the importance of people with dementia feeling as though their needs were respectfully being understood and met. The findings of the current study indicate that there is a gap in the ability of service providers to consider the holistic needs of people with dementia, potentially leading to negative experiences in interactions with healthcare professionals (Von Kutzleben, Schmid, Halek, Holle, & Bartholomeyczik, 2012).

Fragmented dementia care service is a global issue (Prince, Comas-Herrera, Knapp, Guerchet, & Karagiannidou, 2016; Ward-Griffin et al., 2012), and a case management approach was a common recommendation of all service providers interviewed in the current study. The Clinical Practice Guidelines and Principles of Care for People with Dementia (2016) recommended that all people with dementia should be supported by a consistent care manager or coordinator from the time of initial diagnosis. There should also be coordination and integration of referrals, transitions in care and communication between all agencies. Care or case coordination that empowers carers and people with dementia ‘to optimally fulfil’ their needs (Wolfs, De Vugt, Verkaaik, Verkade, & Verhey, 2010, p. 1011) was deemed by participants to be lacking in WA services. A case management approach to delivery of dementia services has recognised benefits such as improving function, more appropriate use of medication, increased utilisation of community services and reduced rates of admission to residential care (Low, Yap, & Brodaty, 2011).

Limited knowledge about dementia, insufficient services available, ineffective communication strategies and other practical considerations, such as environmental housing design and procedures for manual handling, were consistently described by carers, people with dementia and service providers. Education was frequently discussed as a method to improve knowledge and the quality of life of people with dementia and their carers (Bruen, 2005). The Clinical Practice Guidelines and Principles of Care for People with Dementia (2016) recommended that effective communication training is provided to people with dementia and their carers reinforces this finding. According to the National Framework for Action on Dementia 2015–2019 (Australian Government, 2015), assessment through Aged Care Assessment Services or other Commonwealth Home Support Programme services should also trigger access to information, education and counselling. This has the potential to empower carers, while improving quality of life for the person with dementia and delaying their entry into residential care (Brodaty, Gresham, & Luscombe, 1997).

Flexibility of available services to meet the individualised needs of people with dementia and their carers was regarded as a significant gap in service provision by the majority of the participants interviewed in this study. The participants identified that it is very important for consumers to have choice and control over the nature and timing of support they accessed. Participants’ chief concern regarding care was that it should be based on relationships and meaningful engagement, as opposed to being task driven. This is made increasingly difficult by inconsistent staffing, an issue frequently experienced at an international level (Forbes et al., 2008; O'Connell, Hawkins, Ostaszkiewicz, & Millar, 2012; Phillipson & Jones, 2011). The Clinical Practice Guidelines and Principles of Care for People with Dementia (2016) stated that ‘interventions should include consistency of care staff’ (p. 13). Community support workers interviewed by Elliott, Stirling, Martin, Robinson, and Scott (2013) identified that having stability and consistency within long-term relationships with people with dementia contributed to their positivity and happiness about their caring roles. The service providers regarded the move to the CDC model in 2017 as positive move. There is no evidence improvements on clinical outcomes for people with dementia or carers receiving services in the CDC model; however, it has been shown to increase consumer satisfaction overall (Low et al., 2011).

Stigma, negative beliefs and generalised fear of being diagnosed with dementia exist internationally (Alzheimer’s Disease International, 2019) and among the general Australian population (Phillipson, Magee, Jones, & Skladzien, 2012). Service providers in this study described how these factors affected the support available to people with dementia and their carers. Programmes designed to reduce stigma, encourage timely diagnosis, and improve treatment and access to community-based care are required urgently (Alzheimer’s Disease International, 2019; Phillipson et al., 2012). In conjunction with education about dementia for the general public, important and priority needs include greater awareness among health professionals of potential treatments, the availability of community services and supports, and the benefits of early and accurate diagnosis by GPs (Aminzadeh, Molnar, Dalziel, & Ayotte, 2012; Bruen, 2005; Phillipson, Magee, Jones, Reis, & Skaldzien, 2015). However, these needs require change and leadership at a national level and adequate funding to support the time required to realistically assess and monitor people living with dementia (Aminzadeh et al., 2012).

The results of this study indicate that services for people with dementia in WA are limited by a focus on tangible supports that meet basic care needs, especially as the disease progresses. From the perspective of service providers, services and supports may be improved through greater education of the community and health professionals about dementia, implementation of clinical practice guidelines, and the development of ongoing, comprehensive, and consistent support. Recent changes to funding of community services may have the opposite effect through further separation of diagnosing dementia, assessment for services and service provision. Greater continuity will require changes to policy and funding models to create a less fragmented approach to the care and support for people with dementia in this community.

Strengths and limitations

Data saturation was achieved despite the small number of service providers. The purposive recruitment of participants employed in service organisations supporting people with dementia may not be representative of the total population; however, these informants provided significant insight into the research questions. The iterative approach of using deductive and inductive analyses supported the testing and comparison of perspectives of service recipients with service providers. This study was completed in the midst of a significant transition towards CDC, and further research is recommended to determine if this service delivery model has improved the experiences of people with dementia and carers in accessing services.

Conclusion

There is a gap between the focus of service delivery among service providers and the holistic needs of people with dementia and their spousal carers. This disconnect may limit the ability of service providers to respond to the needs expressed by their clients. Identified challenges pertaining to flexibility and provision of relationship-based services were congruent between service providers and people with dementia and their carers. Education and training for health professionals, support workers and families can improve outcomes for people living with dementia; however, the availability and implementation of this training require further financial support by the Australian government.

Footnotes

Declaration of Conflicting Interests

The authors 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 research is supported by an Australian Government Research Training Program (RTP) Scholarship.

ORCID iD

Claire Morrisby

Claire Morrisby is an occupational therapist and lecturer in aged care in the School of Occupational Therapy, Social Work and Speech Pathology at Curtin University. She is currently undertaking doctoral studies investigating needs of people with dementia and their carers. Claire has worked in aged care in the community and leads work integrated learning activities for occupational therapy students to improve care for older adults and improve student understanding of working in this field.

Marina Ciccarelli is an associate professor in the School of Occupational Therapy, Social Work and Speech Pathology,with a background in occupational therapy. Marina returned to academia at Curtin in 2000 after 10 years clinical work in the United States where she worked in the fields of ergonomics, occupational safety and health, injury management, adult physical rehabilitation and paediatrics. She is presently the discipline lead for Occupational Therapy at Curtin University.

Annette Joosten is a senior lecturer in the School of Occupational Therapy, Social Work and Speech Pathology. Annette is the unit coordinator for Paediatrics in the Master Entry programme and Unit Coordinator for Paediatrics for third year students in the undergraduate programme. Prior to commencing at Curtin in 2008, Annette had many years’ experience working as a Senior Clinician and as an inter-professional team leader, and in private practice in Victoria. Annette’s occupational therapy experience is mainly in paediatrics and particularly in disability.

References

Alzheimer’s Australia . (2011). Consumer Engagement in the Aged Care Reform Process. http://www.fightdementia.org.au/common/files/NAT/20120410_ConsumerEngagementAgedCareReformProcess.REPORT.pdf

Alzheimer’s Disease International . (2019). World Alzheimer Report 2019: Attitudes to Dementia. https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf

Aminzadeh

Molnar

F. J.

Dalziel

W. B.

Ayotte

(2012). A review of barriers and enablers to diagnosis and management of persons with dementia in primary care. Canadian Geriatrics Journal, 15(3), 85-95. DOI: 10.5770/cgj.15.42.

Australian Government . (2015). National Framework for Action on Dementia 2015-2019. https://agedcare.health.gov.au/ageing-and-aged-care-older-people-their-families-and-carers-dementia/national-framework-for-action-on-dementia-2015-2019

Bangerter

L. R.

Griffin

J. M.

Zarit

S. H.

Havyer

(2017). Measuring the needs of family caregivers of people with dementia: An assessment of current methodological strategies and key recommendations. Journal of Applied Gerontology, 38(9), 1304-1318. DOI: 10.1177/0733464817705959.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. DOI: 10.1191/1478088706qp063oa.

Braun

Clarke

(2012). Thematic analysis. In Cooper

Camic

P. M.

Long

D. L.

Panter

A. T.

Rindskopf

Sher

K. J.

(Eds.), APA handbook of research methods in psychology: Research designs: Quantitative, qualitative, neuropsychological, and biological (Vol. 2, pp. 57-71). American Psychological Association.

Brodaty

Gresham

Luscombe

(1997). The Prince Henry hospital dementia caregivers? Training programme. International Journal of Geriatric Psychiatry, 12(2), 183-192. DOI: 10.1002/(SICI)1099-1166(199702)12:2%3C183.

Brown

Hansnata

(2017). Economic cost of dementia in Australia 2016-2056. https://www.dementia.org.au/files/NATIONAL/documents/The-economic-cost-of-dementia-in-Australia-2016-to-2056.pdf

10.

Bruen

(2005). Aged care in Australia: Past, present and future. Australasian Journal on Ageing, 24(3), 130-133. DOI: 10.1111/j.1741-6612.2005.00109.x.

11.

Crabtree

B. F.

Miller

W. L.

(2012). Using codes and code manuals: A template organizing style of interpretation. In Crabtree

B. F.

Miller

W. L.

(Eds.), Doing qualitative research. SAGE Publications.

12.

Danaher

T. S.

Gallan

A. S.

(2016). Service research in health care. Journal of Service Research, 19(4), 433-437. DOI: 10.1177/1094670516666346.

13.

Downes

(2013). The Eden principles in dementia respite care: Carers’ experience. Quality in Ageing and Older Adults, 14(2), 105-115. DOI: 10.1108/14717791311327051.

14.

Elliott

K.-E. J.

Stirling

C. M.

Martin

A. J.

Robinson

A. L.

Scott

J. L.

(2013). Perspectives of the community-based dementia care workforce: “Occupational communion” a key finding from the work 4 dementia project. International Psychogeriatrics, 25(5), 765-774. DOI: 10.1017/S1041610212002323.

15.

Fereday

Muir-Cochrane

(2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80-92. DOI: 10.1177/160940690600500107.

16.

Forbes

D. A.

Markle-Reid

Hawranik

Peacock

Kingston

Morgan

Henderson

Leipert

Jansen

S. L.

(2008). Availability and acceptability of Canadian home and community-based services: Perspectives of family caregivers of persons with dementia. Home Health Care Services Quarterly, 27(2), 75-99. DOI: 10.1080/01621420802022548.

17.

Grenade

Walker

(2005). Caring for people with dementia through community aged care packages. Geriaction, 23(4), 5-13. http://search.ebscohost.com/login.aspx?direct=true&db=rzh&AN=2009118258&site=ehost-live

18.

Guideline Adaptation Committee . (2016). Clinical practice guidelines and principles of care for people with dementia. http://sydney.edu.au/medicine/cdpc/documents/resources/CDPC-Dementia-Guidelines_WEB.pdf

19.

Hancock

P. J.

Jarvis

J. A.

(2005). Evaluation of the Australian Commonwealth respite care program: A case study from Western Australia and the Australian Red Cross. Evaluation and Program Planning, 28(3), 301-311. DOI: 10.1016/j.evalprogplan.2005.04.005.

20.

Hunt

M. R.

(2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 1284-1292. DOI: 10.1177/1049732309344612.

21.

Lambert

S. D.

Loiselle

C. G.

(2008). Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing, 62(2), 228-237. DOI: 10.1111/j.1365-2648.2007.04559.x.

22.

Low

L.-F.

Yap

Brodaty

(2011). A systematic review of different models of home and community care services for older persons. BMC Health Services Research, 11, 93. DOI: 10.1186/1472-6963-11-93.

23.

Miranda-Castillo

Woods

Orrell

(2013). The needs of people with dementia living at home from user, caregiver and professional perspectives: A cross-sectional survey. BMC Health Services Research, 13(1), Article 43. DOI: 10.1186/1472-6963-13-43.

24.

National Centre for Social and Economic Modelling . (2019). Dementia Australia Dementia Prevalence Data 2018-2058. https://www.dementia.org.au/files/documents/2019-2058-Dementia-prevalence-S-T.pdf

25.

O’Connell

Hawkins

Ostaszkiewicz

Millar

(2012). Carers’ perspectives of respite care in Australia: An evaluative study. Contemporary Nurse: A Journal for the Australian Nursing Profession, 41(1), 111-119. http://search.ebscohost.com/login.aspx?

26.

Phillipson

Jones

S. C.

(2011). “Between the devil and the deep blue sea”: The beliefs of caregivers of people with dementia regarding the use of in-home respite services. Home Health Care Services Quarterly, 30(2), 43-62. DOI: 10.1080/01621424.2011.569522.

27.

Phillipson

Magee

Jones

Reis

Skaldzien

(2015). Dementia attitudes and help-seeking intentions: An investigation of responses to two scenarios of an experience of the early signs of dementia. Aging & Mental Health, 19(11), 968-977. DOI: 10.1080/13607863.2014.995588.

28.

Phillipson

Magee

Jones

Skladzien

(2012). Exploring dementia and stigma beleifs: A pilot study of Australian adults aged 40 to 65 years. https://www.fightdementia.org.au/files/20120712_US_28_Stigma_Report.pdf

29.

Prince

Comas-Herrera

Knapp

Guerchet

Karagiannidou

(2016). World Alzheimer report 2016: Improving healthcare for people living with dementia: Coverage, quality and costs now and in the future. https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf

30.

Productivity Commission . (2018). Report in Government Services 2018. https://www.gen-agedcaredata.gov.au/Resources/Reports-and-publications/2018/January/Report-on-Government-Services-2018-part-f,-chapte

31.

Raivio

M. M.

Laakkonen

M.-L.

Pitkälä

K. H.

(2011). Alzheimer’s patients’ spouses critiques of the support services. ISRN Nursing, 2011, 1-8. DOI: 10.5402/2011/943059.

32.

Stirling

Andrews

Croft

Vickers

Turner

Robinson

(2010). Measuring dementia carers’ unmet need for services – An exploratory mixed method study. BMC Health Services Research, 10, 122. DOI: 10.1186/1472-6963-10-122.

33.

Tang

Ryburn

Doyle

Wells

(2011). The psychology of respite care for people with dementia in Australia. Australian Psychologist, 46(3), 183-189. DOI: 10.1111/j.1742-9544.2010.00005.x.

34.

Thorne

Kirkham

S. R.

MacDonald-Emes

(1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20(2), 169-177. DOI: 10.1002/(SICI)1098-240X(199704)20:23.3.CO;2-B.

35.

Von Kutzleben

Schmid

Halek

Holle

Bartholomeyczik

(2012). Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & Mental Health, 16(3), 378-390. DOI: 10.1080/13607863.2011.614594.

36.

Ward-Griffin

Hall

DeForge

St-Amant

McWilliam

Oudshoorn

Forbes

Klosek

(2012). Dementia home care resources: How are we managing? Journal of Aging Research, 2012, 1-11. http://search.ebscohost.com/

37.

Wolfs

C. A. G.

De Vugt

M. E.

Verkaaik

Verkade

P.-J.

Verhey

F. R. J.

(2010). Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International Journal of Geriatric Psychiatry, 25(10), 1006-1012. DOI: 10.1002/gps.2451.