Understanding and Overcoming Negative Attitudes That Hinder Adoption of Reablement in Dementia Care: An Explorative Qualitative Study

Introduction

Dementia is a spectrum of neuro-cognitive disorders predominantly represented by Alzheimer’s disease. Worldwide, an estimated 55 million people are affected by dementia with projections to increase to 78 million by the year 2030 and 139 million by 2050.¹ Dementia is characterized by a loss of cognitive function that impairs memory, personality, and behavior; this is further exacerbated by physical impairments such as falls, stooped posture, rigidity, and an unsteady gait.² Dementia often leads to limitations in daily activities that include basic tasks like personal hygiene and dressing, as well as instrumental activities such as taking medication, managing finances, and driving.^2–4 These limitations make it difficult to maintain social interactions and participate in other meaningful daily activities. As a result, there is an increased dependence on family caregivers and health and social care professionals. The care burden for caregivers might be substantial. People with dementia are viewed as a health disparity population and experience exclusion from the community, negative attitudes, and a lack of independence.^5–7 Moreover, family caregivers often take over tasks instead of involving the person, which further undermines their independence and autonomy and may ultimately lead to a decline in function.^8–10

Reablement is an approach that empowers people to engage in meaningful and social activities through personalized, resource-focused, and goal-oriented methods.¹¹ Reablement programs for people with dementia have been implemented in countries such as Australia, the United Kingdom, and the United States of America. Examples include programs such as the Care of People with Dementia in their Environments (COPE),⁸ the Interdisciplinary Home-Based Reablement Program (I-HARP),¹² and the Goal-Oriented Cognitive Rehabilitation (GREAT trial).¹³ All of these programs aim to help people with dementia to keep or regain their skills, stay engaged in important activities, remain active in society, and lead a meaningful life.¹⁴ These programs show positive results regarding well-being for family caregivers, as well as increased engagement in daily activities and functional independence for people with dementia.^8,15–17

Despite promising results, the adoption of reablement in dementia care remains slow and challenging due to multiple factors, such as insufficient workforce training and inadequate integration of the programs into the current health system.⁸ The ReableDem working group identified critical areas of focus to accelerate the adoption of reablement in dementia care.¹¹ These efforts have begun to change the attitude of stakeholders.

To the best of our knowledge, scarce literature has focused on how attitudes impact the adoption of reablement for people with dementia. Although several reablement interventions have demonstrated positive outcomes and some provide knowledge about barriers to uptake of reablement, none of them explicitly described the attitudes that hinder the real world adoption of reablement in dementia care.^8,12,13,18 In general, attitudes express favorable or unfavorable tendencies shaped by emotions, past behaviors, and other influences.¹⁹ Negative attitudes can limit the benefit of clinical interventions, resulting in poor outcomes; hence, gaining a deeper understanding of attitudes enables the development of targeted strategies.²⁰ Therefore, the aim of this study was to gather the views of experts regarding the negative attitudes and the underlying causes of those attitudes that hinder the adoption of reablement and develop strategies for mitigating these negative attitudes for faster adoption.

The research questions are as follows:

1. What are the attitudes that prevent the adoption of reablement in dementia care?
2. What strategies can be used to overcome negative attitudes that hinder the adoption of reablement in dementia care?

Materials and Methods

Study Design

This study employed an exploratory qualitative research design to gain a better understanding of, address, and overcome the negative attitudes that hinder the adoption of reablement by analyzing experiences and attitudes.²¹ This exploratory approach allows for flexibility to discover new insights and understand complex phenomena.²² The Consolidated criteria for reporting qualitative research (COREQ) checklist was used to ensure transparent reporting of the qualitative research.²³ Figure 1 shows the methodological overview of the study.

Figure 1 Methodological overview of the qualitative exploratory study.

Population

Reablement and/or dementia experts were recruited from the participating countries in the ReableDem working group (ie Australia, Denmark, the Netherlands, Norway, Sweden, and the United Kingdom). The eligibility for participation in this study was defined by the following criteria: a) possessing expertise in reablement and/or dementia care through either research and/or practical experience with people with disabilities, and b) fluency in spoken English. A convenience sample was employed to identify and select participants. Initially, the participants were approached during a webinar of the ReableDem working group. Consequently, snowball sampling was employed,²⁴ which allowed the primary participants to identify other potential participants, such as clinical experts. Thereafter, invitations were sent out via email. Out of 21 invited experts, 10 experts agreed to participate. Four invitations were declined due to scheduling issues, and no response was received from six invitees despite sending reminder emails twice. One participant was unable to join at the last minute due to sickness. An informed consent form was attached to the invitation email, highlighting the research aims and questions. Participants were encouraged to sign the consent form and send it back at their earliest convenience. The study aimed to recruit participants until the point of data saturation, meaning the point where no additional information is being gathered and data begins to repeat itself.²⁵

Data Collection

Data collection was performed by author K.A. Semi-structured interviews were conducted with the participants based on a topic list of predetermined open-ended questions, as these questions allow for systematic and comprehensive exploration of the phenomena.²⁶ The topic list focused on the view of experts regarding negative attitudes that hinder the adoption of reablement in dementia care and strategies for improvement. The interviews lasted from 30 to 50 minutes per participant. The interviews were conducted online and audio-recorded. Additional notes were taken by the author during the interviews. The participants were interviewed between May-June 2024.

Data Analysis

The qualitative data from the semi-structured interviews was transcribed verbatim and coded using Atlas.ti version 23.1.1 (Scientific Software Development GmbH). An inductive thematic analysis approach was employed using a combination of open and axial coding. The open coding approach allowed the data to be grouped into distinct concepts and ideas, enabling deeper insights into the attitudes and corresponding strategies. The relations between codes were identified by using axial coding as described by Braun & Clarke.²⁷ Author K.A. completed the coding and the analysis by first listening, transcribing, and reading the interviews to gain an initial understanding of the interviews before making initial codes. From the codes, categories were created and linked together to create themes. The researcher regularly discussed the coding procedure and its results with author S.M. to minimize bias.

Trustworthiness

The trustworthiness of any study is concerned with whether the research is truthful, reliable, and valid.²⁸ The trustworthiness of this study was enhanced by transparency in the verbatim transcription of the interviews and the coding process. In addition, member checks were employed. This involved the presentation of the interview transcripts back to the participants as described by Creswell and Creswell.²² The interviews began with an introduction of author K.A. and an explanation of the rationale, design, and subject of the study. Direct quotes from the interviews were added to the results to enhance the transparency of the study further. Efforts were made to ensure the privacy and confidentiality of the participants during data collection and analysis.

Results

Efforts were made to ensure adequate representation from all countries within the ReableDEM research network. The distribution of participants among the involved countries were: Australia (n=3), Denmark (n=3), the Netherlands (n=2), Norway (n=0), Sweden (n=1), and the United Kingdom (n=1). The sample of 10 experts consisted of four professors, one associate professor, two occupational therapists, one postdoctoral research fellow, and two PhD students. Five main themes and related strategies were identified: 1) lack of understanding of preserved capabilities, 2) reluctance and fear of upsetting routines, 3) institutional barriers, 4) misinterpretation of reablement, and 5) the complexity of the healthcare system. Figure 2 summarizes the 5 main themes, 12 sub-themes, and related strategies for addressing these challenges.

Figure 2 The factors contributing to negative attitudes that hinder adoption of reablement in dementia care, alongside strategies for addressing these challenges.

Lack of Understanding of Preserved Capabilities

Most participants indicated that negative attitudes that hinder adoption of reablement stem from family caregivers’ lack of awareness about the preserved capacities of people with dementia. These caregivers, including friends and family, often perceive people with dementia as entirely dependent and incapable of comprehending or performing tasks, thus viewing reablement as ineffective. This misconception arises from media portrayals, lack of education, and poor past care experiences. Consequently, overburdened caregivers are reluctant to adopt new practices like reablement, which demand greater commitment and effort.

[…] families maybe aren’t aware quite so much about the capabilities that are often reserved still in a person [.] and that the person with dementia cannot actually do anything anymore when this is not really the case. They still have lots of preserved capabilities. – Participant 1

[.] many people [family caregivers] don’t have the perception that it’s still valuable to teach people things, to train them, to get them back to their normal life [.] So I think one very, very important attitude is this, feeling that it doesn’t matter anymore. – Participant 8

Some participants also expressed the inability of health and social care professionals, such as nursing staff, to acknowledge the potential of people with dementia. They tend to underestimate these individuals’ abilities and focus more on providing comfort and care, giving them less opportunity to show their capabilities. This takes focus away from providing rehabilitation programs like reablement to maintain function.

[…] they are unaware of many people [with dementia] that there is possibility and capabilities to do activities [.] I think some nursing staff for sure do not know what this person is able to do. – Participant 10

[.] also many staff members, people working with people living with dementia, and in general society say they [persons living with dementia] have dementia, so they are unable to learn new things [.] those are main things. – Participant 5

Multiple participants proposed strategies to create awareness about the retained capacities of people with dementia. One participant proposed that there needs to be a strong focus on dementia awareness and education, with dedicated weeks and activities promoting dementia-friendly environments to provide them with the opportunity to enhance and show their capabilities.

We have specific weeks dedicated to dementia and dementia awareness. So, there’s lots of such activities here in Australia [.] there’s a lot of education that needs to go towards the general public for them to really understand the disease and what […] is ahead. – Participant 1

Some participants believed that, in addition to educating families about dementia and the capabilities of people with dementia, there needs to be a creation of shared positive experiences regarding the abilities of people with dementia for both family caregivers and healthcare professionals. Care relationships should also be reciprocal to allow people with dementia to share stories and maintain their sense of purpose.

[…] the trick is to understand and to learn what those capabilities are, and then educating the families around that so that they can still understand that the person can do things [.] – Participant 1

Reluctance and Fear of Disrupting Routines

Some participants noted that a dementia diagnosis generates insecurity for family caregivers due to the shift from a stable present to an uncertain future. This uncertainty challenges caregivers who seek stability in managing their loved one’s care. Introducing reablement compounds this uncertainty, as caregivers with established routines and coping mechanisms are reluctant to adopt new interventions. Consequently, this reluctance fosters negative attitudes that may hinder adoption of reablement.

When people are later diagnosed, by then, families have already kind of created their coping strategies and then it’s very difficult […] and frightening for them to give those up [.] maybe upsetting the system and the routines that they’ve now built around them to be able to cope. – Participant 2

One participant emphasized the importance of understanding the impact of dementia on both people with dementia and their caregivers. Family caregivers should be seen not just in their caregiving roles but also as individuals with their own lives and needs. Recognizing and addressing their challenges can make caregivers more present in the lives of their loved ones and more open to adopting reablement.

But we also need to get a thorough understanding of how it [dementia] affects the everyday life of the informal caregiver. I think we need to be as thorough with them as we are with the person with dementia and not just see them as a caregiver but also to understand them as a person [.] – Participant 7

One participant noted that the fear of disrupting routines and losing control stems from the portrayal of people with dementia as incapable and unsafe. This fear is often fueled by negative media portrayals and bad personal experiences.

I think definitely some negative experiences can contribute to it. Also, often what happens in media or in other places, [.] if you have a bad experience as a family member, then you kind of already have that preconceived idea and it could be quite hard or difficult to change that. – Participant 1

Enhancing community education and destigmatization is essential for promoting awareness and acceptance of reablement. Sharing positive stories about the achievements and capabilities of people with dementia can further improve understanding and reduce stigma, fostering a more supportive environment.

Broader community education and destigmatization so that people talk about the services that they’re using so it’s not embarrassing that someone’s coming to take mom shopping. […] it is important so that they know it’s available. So that’s the broad community education. – Participant 3

Institutional Barriers

A few participants noted that institutional barriers contribute to negative attitudes among family caregivers, slowing down reablement adoption. A major barrier is limited availability of health and social care professionals, who are already overburdened with patient care. Reablement’s core principle of person-centeredness involves an understanding of the importance of setting personalized goals, which demands time that health and social care professionals find hard to allocate.

It’s because person-centered care is about knowing the person. So, if you are responsible for […] several dozens of residents in your care every day, and then you are the only person during the shift, there’s no way you can know the person that well […] Reablement is the same [as person-centeredness]. – Participant 4

I think it was about being expected to do more on top of what they [health and social care professionals] were already doing [.]– Participant 2

The challenge is exacerbated by insufficient guidance and support from clinical leadership and senior management. One participant noted that health and social care professionals are overwhelmed with information and given minimal time to address it, leaving little opportunity to engage people with dementia in meaningful social activities. In particular, newly employed health and social care professionals receive inadequate support and often end up performing routine tasks.

What I can say is that there isn’t sufficient […] clinical leadership or support from those care environments, where […] new clinicians or clinicians that work in that environment for a long time […] are just pushing a lot of […] information. It just does not work. – Participant 4

The participants emphasized the need to provide health and social care professionals with infrastructure to support reablement, such as sufficient allocated work time. They advocated implementing reablement through smaller, incremental steps rather than awaiting major changes. These steps can help health and social care professionals feel more supported, reducing negative attitudes and making reablement more feasible.

I think there has to be the infrastructure that is really supporting reablement approach in our care. Does that mean that we have to wait for […] decades until we have proper staffing? Not really. It’s also about […] small steps. I really believe in that, because if we wait for something big to happen […], ideal staffing, environment, and there are lots of activities, that may never happen. But it’s in a gradual step by step we really have to make sure that […] we may not be able to use reablement in every single care practice. But we can start one at a time. You know, the small things. – Participant 4

Several participants identified financial viability as a significant barrier contributing to negative attitudes towards reablement. According to the participants, policymakers acknowledge the benefits of reablement but doubt its financial sustainability, perceiving reablement as a costly strategy.

They [policymakers] are keen, but they often identify a lot of barriers. Funding is probably one of the biggest things, and lack of staff is another […] – Participant 1

A few participants suggested that providing evidence of cost-effectiveness and real-life examples could help convince policymakers and managers. They emphasized the importance of using positive stories, summarized evidence, and practical experiences to demonstrate the value of reablement.

We need to convince politicians and managers that it is not necessarily expensive to do reablement and we need to do so by providing experiences and […] evidence from research. – Participant 6

They [policymakers], want the evidence summarized in a specific way and they want solutions that they can implement. – Participant 3

Misinterpretation of Reablement

A few participants believed that a lack of understanding and skepticism about the benefits of reablement contribute to negative attitudes towards its adoption. This was viewed as true among health and social care professionals as well as policymakers who perceive the results of reablement as neither immediate nor effective in people with dementia.

[.] they [healthcare professionals] often think those limited resources can be invested towards something like […] stroke rehabilitation, where we can see the benefits quite obviously. They almost prefer that to dementia, where the benefits aren’t as great or easily noticed. – Participant 1

Two participants noted a significant gap in understanding and implementing reablement among both family caregivers as well as health and social care professionals. Many caregivers are unfamiliar with reablement, and health and social care professionals lack clarity on its components and their roles.

This is also something about understanding what is reablement [.] But a lot of the other health professionals are quite uncertain about what’s expected of her/him and I also think it goes for the informal caregivers and for the people with dementia, the understanding of what is reablement. – Participant 7

Some participants mentioned that to enhance the understanding of reablement, there is a need to integrate reablement education into the curriculum of education programs; This would ensure that future health and social care professionals enter the workforce with the necessary knowledge, attitude, and skills.

We should really start it from […] education. So, when […] you think about tertiary education, we need to have something in the degrees or in the courses [.] so then when they do come into the workforce, they already have that knowledge and background. – Participant 1

Complexity of the Healthcare System

Some participants believed that navigating the healthcare system poses significant challenges for people with dementia and their family caregivers, especially when seeking reablement or rehabilitation services. The complexity of the system requires people to be aware of available services. Introducing a new intervention like reablement into this complex system can create negativity, deterring them from wanting to access the service.

[…] you have some care coordinators, but our system is very difficult to navigate. And while there are pockets of reablement or rehabilitation, you essentially have to go and find it yourself and use it yourself [.] – Participant 3

One participant highlighted the challenge of choosing services due to a lack of knowledge about reablement services among family caregivers. Caregivers tend to choose services with immediate and clear benefits, such as cleaning or transportation, rather than reablement programs that might offer long-term improvements in quality of life. Even if home care packages are supposed to deliver coordinated care and services that meet people’s care needs, they tend to be too complex for family caregivers to really comprehend the long-term benefits.

[…] part of it was that they [family caregivers] didn’t know about it [reablement services] but also that they, because they don’t know about what this dietician is or physio [therapy] is or occupational therapy is, they spend or choose to use their [care] package at least in home care on things that have very clear benefits to them – Participant 3

To improve access to reablement, it is crucial to present care options in a manner that is easily understandable for family caregivers. The provision of clear information of reablement benefits for people with dementia can help caregivers make informed decisions. This approach can guide caregivers to prioritize interventions that offer more substantial long-term benefits.

So, we kind of need to give them the choices or present the options in a way they would understand. So, they would have an idea of what is more important to do, if its [help with] cleaning that is more important or, if we make them understand reablement, they might want to take up that more. – Participant 3

One participant noted that policymakers often generalize dementia care policies, resulting in inadequate support for specific groups with unique needs. The focus tends to be on more complicated cases, overshadowing the challenges faced by those with early or moderate dementia. This generalized approach can lead to assumptions and strategies that fail to address the diverse needs of all people with dementia. Therefore, there is a need to develop policies that consider the different stages of dementia progression.

[…] they should be more diverse in their policy. Also, for example people living with early onset dementia, they have a different disease [.] so then you also need different strategies and different policy […] for those groups. – Participant 5

Discussion

While several reablement interventions have demonstrated clinical efficacy, these studies do not deeply shed light on the attitudinal barriers that affect the adoption of reablement in dementia.^8,12,13 Recent studies have begun to understand implementation barriers to reablement including confusion about professional roles and resistance from staff, yet the focus on how attitudes of formal and informal caregivers and policymakers shape the adoption process remain unexplored.^10,29,30 Hence, this qualitative study explores negative attitudes that may impede the adoption of reablement and attempts to identify strategies that can mitigate these attitudes to foster its adoption. A thematic analysis of interviews with experts from five different countries revealed several key themes. The negative attitudes that hinder adoption of reablement can be attributed to people with dementia, their family caregivers, health and social care professionals, management, policymakers, and also to the wider society. The themes include a lack of understanding of preserved capabilities, reluctance and fear of disrupting routines, institutional barriers, misinterpretation of reablement, and the complexity of the healthcare system.

Most participants mentioned health and social care professionals’ lack of understanding of the preserved capabilities of people with dementia as an important reason for having negative attitudes. This is consistent with another study by Scior, albeit not focusing on reablement, that found that a lack of understanding of the intellectual capabilities of people with dementia leads to the harboring of negative attitudes.³¹ This is owed partly to past experiences, lack of education, and negative media portrayal of people with dementia as described by Low and Purwaningrum.³² Another study by Layton et al supports the strategies proposed in the current study, namely promoting dementia awareness and educating family caregivers.³⁰ This study elaborates more on these strategies in terms of giving information through dementia and caregiver organizations, cognitive clinics, peer support groups, waiting rooms and more, in addition to broad community media exposure about dementia rehabilitation. The benefit of such strategies is supported by Low and Purwaningrum who found that community education, destigmatization efforts, and positive stories from the media are vital to promoting awareness and acceptance of dementia services.³²

The fear of upsetting established routines among family caregivers may also act as a hindrance towards the adoption of reablement. Caregivers develop coping mechanisms to handle the care burden. Hence, the introduction of interventions threatening to disrupt those routines might be difficult to accept. This aligns with the observed resistance among health and care professionals to change routines due to reasons such as fear of the impact on work, apprehension about routine changes, time constraints, and fear of added responsibilities.^33,34 This reluctance also stems from the negative portrayal and fearful images of dysfunction of people with dementia in the media and elsewhere.^20,32 Thus, the experts mentioned that a thorough understanding of the impact of dementia, on both those affected and their caregivers, and recognition of caregivers as people with their own lives and needs are essential elements. In addition to strategies to promote dementia awareness, psychosocial support is important to promote the wellbeing of caregivers in managing a complex, changing situation as well as to promote an enabling caregiver role.^35,36

Some participants suggested that institutional barriers are the reasons for negative attitudes. In addition to lack of time, health and social care professionals receive poor support from management, further hindering efforts towards prioritizing reablement in their daily care delivery. Management that offers leadership and support to health and social care professionals can encourage staff to more openly embrace the concept of reablement within organizations²⁹ and initiate change through implementation of evidence-based programs.¹⁸ Participants also highlighted that funding is a huge factor contributing to the adoption of reablement, especially among the policymaker group who prioritize the economic benefit aspect of interventions, as described by O’Connor et al.²⁹ In general, those responsible for managing budgets make an effort to make the best use of scarce resources and save money.³⁷ Health and social care professionals and policymakers often believe that the results and benefits of reablement are not as immediate or obvious as those for other conditions, such as stroke rehabilitation. This perception leads to lower prioritization and investment in reablement. However, reablement interventions that identify the capabilities of people with dementia and then engage them in activities that foster those capabilities, have proven to be effective.^8,11,15–17 Since the evidence indicates positive effects and cost-effectiveness especially for persons in early stages of dementia, the implementation of such interventions could be seen as a strategic prioritization in the management of scarce resources.^18,38 To address the challenging situation with increased care needs due to ageing populations, it is imperative that policy- and decision makers at different societal levels gain knowledge about the positive health outcomes for people with dementia, and their family caregivers, in addition to cost effectiveness, to facilitate a broader acceptance and adoption of novel health programs.³⁹

Participants suggested that integrating reablement education into the curriculum of healthcare programs can ensure that future health and social care professionals are more confident in these practices from the start of their careers. Layton et al state that education and training about dementia and dementia rehabilitation is essential for health and social care professionals.³⁰ Clear, accessible information about the benefits of reablement can help health and social care professionals make more informed decisions. This aligns with research showing that education improves the positive attitudes of physiotherapists towards people with dementia.²⁰

The complexity of the healthcare system presents additional challenges for the adoption of reablement. Families are often either unaware of the services that are available to them or provided with services which are inaccessible and/or inconvenient for them, leading to a higher burden of care as demonstrated by Singh et al.⁴⁰ Health literacy has been raised as important for how people with dementia and caregivers access and make use of health information^41,42 and thus it is important for organizations and professionals to promote equitable access to dementia-related information. However, more research is needed to understand how different modes of delivering dementia-related information can support the adoption of reablement and how improved access to information impact people with dementia and caregivers. The lack of adequate services increases the burden on family caregivers and reduces the adoption of new services, as most available options are either unsuitable or designed to meet the needs of those with more complicated circumstances. Policymakers should create diverse policies to meet the varied needs of different dementia populations to better support all those affected.

Strengths and Limitations

This study has some methodological strengths. The population sample for this study included experts from five countries, ensuring multi-institutional and multi-continental diversity in the perspectives on dementia and reablement. The use of semi-structured interviews allowed the exploration of multi-faceted insights from different experts into the negative attitudes that hinder reablement adoption.

This study has also some limitations. The main weakness is that this study includes insights from experts in dementia care and reablement, but it does not include insights from people with dementia or other stakeholder groups who may have different opinions. This choice was made based on language challenges when interviewing other groups, such as people with dementia or their family care givers. In addition, the sample size consisted of only 10 participants. Country-specific results are not provided in order to protect personal identifiable information in such a small sample. Moreover, the data were insufficient for cross-country analyses. However, due to the vast diversity in dementia care practices across different healthcare systems, cultures, and socioeconomic backgrounds, conducting a cross-country analysis would have been favorable. Finally, the snowball sampling approach used in this research might have resulted in homogeneity in the sample that may have limited diverse perspectives.

Conclusions

This study explored negative attitudes that impede the adoption of reablement and discussed strategies that can be used to overcome these challenges for its faster adoption. The study revealed several key themes that highlight negative attitudes concerning dementia care and their underlying causes. The identified themes address a lack of understanding of preserved capabilities in persons with dementia, caregiver reluctance and fear of disrupting routines, institutional barriers, misinterpretation of reablement, and the complexity of the healthcare system. Strategic interventions that were proposed to mitigate these negative attitudes include enhancing dementia awareness, educating family caregivers, understanding caregiver burden, community education, destigmatization, improving clinical leadership, raising awareness of reablement successes and practices, integrating reablement into educational curriculum, developing comprehensive policies, and improving access to services. An inclusive approach to dementia care that recognizes the preserved capabilities of people with dementia and supports family caregivers can facilitate the acceptance and adoption of reablement practices.