The Possibilities for Human-Rights-Based Approach in Long-Term Care for People with Dementia in Slovenia

Abstract

The number of people with dementia is increasing, triggering a number of innovations in the organisation of long-term care. Modern concepts of care for people with dementia put their rights and active participation in care at the forefront. In this paper, we highlight the relevance of this perspective in Slovenia, where the institutional care dominates long-term care to date. Long-term care for people with dementia should be anti-discriminatory and against any kind of contempt, exclusion, labelling and stigmatisation. The organisation of institutional care for people with dementia alone will not be able to meet these objectives, therefore, we conduct a research with the method of rapid needs and services assessment to identify the practices of formal and informal care providers in implementing a ‘human-based approach’. The results of research manifest that there is a need to regulate respect for the fundamental human rights of people with dementia by (1) giving them equal access to medical treatment and early diagnosis, (2) by increasing the availability of care tailored to their needs and (3) by enabling them to exercise their right to live in the community. The rights of people with dementia to make free, autonomous and participatory decisions can serve as a model.

1. Introduction

Long-term care (LTC) for people with dementia is becoming an increasingly recognised phenomenon; as the number of people with dementia increases both nationally and globally, the provision of care for people with dementia has become a major challenge. The number of people living with dementia—estimated to stand at 55 million in 2019—is expected to rise to 139 million in 2050, according to the most recent World Health Organisation figures (Gauthier, Webster, Servaes, Morais and Rosa-Neto) [1]. In Slovenia, there is no register of people with dementia available; however, it is estimated that in 2019 there were around 43.038 people with dementia, a number that is expected to double by 2035 due to demographic trends [2]. One person with dementia is cared for by at least three people, therefore, around 150.000 relatives, friends and formal providers of care are indirectly affected as well [3]. In general, LTC in Slovenia has traditionally been institutionally oriented [4], therefore, institutional care is also foreseen for people with dementia. This is in contrast to the accepted guidelines for dementia care at the global level, which highlights independent living for people with dementia in the community or home environment [5].

We believe that the institutionalisation of people with dementia in Slovenia is a severe violation of their rights and that the LTC that is being established following the adoption of the Long-Term Care Act [6] should be based on community-based care. The shift towards community-based care can also be based on legal, professional and ethical principles required by a number of international documents and declarations. Of particular relevance to the field of LTC for older people and people with dementia are: Charter of Fundamental Rights of the European Union (2010), EU Charter of Rights and Responsibilities of Older People in Need of LTC and Assistance (2010), European Social Charter (2010), International Covenant on Economic, Social and Cultural Rights (1992), Madrid International Plan of Action on Ageing (2010), Regional Implementation Strategy (2002) and Convention on the Rights of People with Disabilities (2008) [7].

The guidelines for understanding dementia and the development of care should be based on a human-rights-based approach [8], which puts the needs of people with dementia at the forefront and does not see dementia only as a disease, but rather as a disability, a condition that affects the social functioning of individuals and the people around them. It enables an understanding of the participatory role of people with dementia in making decisions about their lives; therefore, the voice of people with dementia needs to be heard by the professionals providing care for them and by the politicians planning and guiding the development of care for people with dementia.

In this paper, the results of the empirical study titled LTC of people with dementia in the theory and practice of social work, which is part of the Slovenian national research, are analysed. The results of the analysis manifest to what extent the elements of the human-rights-based approach are authentic in understanding the LTC for people with dementia by formal and informal care providers, in order to be able in the future to design a modern LTC for people with dementia that puts human rights at the forefront.

2. LTC for people with dementia as anti-discrimination field

LTC for people with dementia should be anti-discriminatory, which means that the long-term care system and all its staff should work against prejudice, negative attitudes and contempt that result in exclusion, labelling and stigmatisation. These are fundamental human rights that should be respected and implemented within LTC. First and foremost, the anti-discriminatory practices should be developed at all three levels of LTC (e.g. micro, meso and macro levels), as this is the guiding principle that makes the realisation of the fundamental human rights of people with dementia possible.

At a micro level, people with dementia quickly become stigmatised, because their behaviour is often different from normal, socially acceptable behaviour. To this end, the use of words and expressions is adapted, that is, the language of politicians, professionals, informal and formal care providers, representatives of local and wider society and others who make up LTC. Swaffer [9], Reynolds et al. [10] and Heward, Innes and Cutler [11] draw attention to the correct use of language to reflect the attitudes towards people with dementia. The use of expressions, such as demented, dementia sufferers, dementia subjects, dementia victims, not all there, is still common in political documents, in professional and scientific conferences across various disciplines and, consequently, among researchers in these disciplines, and is by no means different from everyday language. Swaffer [9] points out that stigmatisation of people with dementia is endemic in the literature and that discrimination against people with dementia is present even in advocacy organisations. There is a need to advocate for a language that normalises the lives of people with dementia, is inclusive rather than exclusive, and supports people with dementia in making decisions about their lives rather than insulting them. The rhetoric of various professionals working in the field of dementia not only has an impact on people’s everyday language but also shapes the general image of people with dementia and determines their position in the community. In such a situation, it is understandable why people with dementia live without social power and unconditionally accept any kind of help. The prevailing rhetoric about dementia and people living with it disempowers people with dementia, is demeaning, affects their identity, labels and stigmatises them. The disability rights movements have been most successful in eliminating the pejorative language previously used to describe people with disabilities, and words like ‘retarded’, ‘handicapped’, ‘cripple’, ‘infirm’ and ‘imbecile’ are, fortunately, no longer in use [8]. Following this example, the rhetoric about the people with dementia could be changed and by giving them an activist role in education processes, the language that today is predominantly derogatory in the media, among professionals, researchers, politicians and society at large, could change as well.

People with dementia are not involved in research, not even in research on stigma, the area they could report on most authentically, because they experience stigmatisation on a daily basis. Unfortunately, the research on the social dimensions of dementia is dominated by the principle of knowledge about people with dementia being created without them. A common excuse for excluding people with dementia from research is their reduced cognitive abilities [12]. If we aim to promote the empowerment of people with dementia, research needs to be designed and conducted based on the inclusive research strategies. It is not sufficient to only partially involve, for example, a small number of people with dementia, without drawing up clear goals, purpose and their roles. Including people with dementia in research in this way is ‘tokenistic’, since it only manifests the awareness of the exclusion of people with dementia on a symbolic level, without actually destigmatising them.

The starting point of such research is based on the belief that only people with experience of living with dementia can change the prevailing exclusionary attitudes towards them. These examples are certainly relevant for the LTC of people with dementia in Slovenia, as there are no such organisations in the field of dementia. They are exemplified by:

1. The Scottish Dementia Working Group [13] is a group of people with dementia campaigning to improve existing care and change the prevailing negative attitudes towards people with dementia. The group is actively involved in various professional forums and committees, and it participates in conferences and has an impact on the policy change.

2. European Dementia Working Group [14] is a group of people with dementia working under the umbrella of Alzheimer Europe, an organisation that brings together 37 national NGOs working in the field of dementia support, of which Spominčica [15], the Slovenian association is a member. They make sure that the priorities and the perspectives of people with dementia are included in all Alzheimer Europe activities.

3. Australian Dementia Advisory Committee [16] is a national advocacy platform for people with dementia. Its members help shape the services, programmes and policy development, and strive for a community where people with dementia are valued and respected.

At the meso level, the so-called dementia-friendly communities can serve as a model for establishing anti-discrimination practices. The concept of these communities is rooted in the philosophy of ‘age-friendly communities’, which can be traced in contemporary social gerontology [17, 18]. It is a community that enables its members to live meaningful lives as they age because it is tailored to meet their specific needs and priorities [19]. Age-friendly communities provide support for people in need of LTC, while allowing them to be actively involved in the community and have recognised social roles. These communities should also be modelled as ‘dementia-friendly communities’, where the conditions are in place to empower people with dementia to live their lives as they did before their diagnosis. According to the Alzheimer’s Society [20], these communities should provide the inclusion of people with dementia in the living community, its activities, early diagnosis, community support and care and mobility and stigma reduction. Only people with dementia can define what a ‘dementia-friendly life’ is for them and what they want their community to be like, which is inclusive and enables them to live independently as they did before the onset of dementia [21]. There are a number of good practices of ‘dementia-friendly communities’ around the world, for example, in the UK, Belgium, Germany, the USA, Australia and Japan. In the UK, the economic impact of dementia-friendly communities for people with dementia was quickly recognised, as caring for people with dementia in a home environment is cheaper and safer than institutional care in a nursing home or hospital [11]. However, this should not be the only lever for establishing such communities, otherwise, the desired changes in the destigmatisation of people with dementia will not be achieved.

At a macro level, the general public’s opinion on dementia can also be changed in different ways. Not only through education. Learning from one’s own experience is effective, as is manifested by Reynolds et al. [10], who present an experiment in which people with dementia participated in a concert organised by a university campus symphony orchestra. Before the concert, the audience was asked questions about their expectations, and after the event, it was asked how their opinion about people with dementia changed. Their perception of dementia changed a lot after the concert because they realised that people with dementia were not only dependent on others for help but could also make a relevant contribution to the community despite their disease.

3. Human-rights-based approach in LTC for people with dementia

Cahill [8] develops an interesting concept of understanding dementia through the lens of human rights by introducing dementia as part of the social model of disability. She asserts that dementia as a disability is a human rights issue because the person diagnosed with dementia is at risk of experiencing injustice, marginalisation, and discrimination. In different countries, it is common for persons with dementia to face various structural barriers, such as difficulties in accessing diagnostic and post-diagnostic services, disregard for the right to autonomy and respect for their dignity. Therefore, it is important to consider the needs of people with dementia as their basic human needs, and the responses to their needs (i.e., services, forms of assistance) must be organised and implemented according to the realisation of human rights.

Respect, consideration and coexistence are values that should be internalised and implemented by people working in the area of LTC. They enable people with dementia to play a participatory role at the level of community and society as a whole. On the other hand, it is also important to develop the methods of support or care at the level of LTC that enable the participation of people with dementia. One such method is personal planning, which is important for people with dementia already before the onset of the disease. There is a method known as advanced personal planning [21, 22, 23] because it is important for people with dementia to make decisions about their future and to express their wishes at a stage in their disease when they are still able to do so and are believed by others to be truly able to do so. Boyle [22] cites the results of a study that looked into the participatory role of people with dementia in day-to-day decisions about the course of their lives and the impact of social factors on this role. She concludes that it is up to us without dementia to recognise and provide the participation of people with dementia. By talking less and communicating more, by reducing daily activities and tasks, and by allowing reflection on activities, we will enable people with dementia to take an active part in decisions about their lives. We will identify their wishes and life goals and be able to follow them through the advanced stages of their disease.

This approach is also getting increasingly relevant due to advances in medicine, which can predict at an early stage whether a person may potentially suffer from dementia (e.g. Alzheimer’s dementia) through various tests (e.g. biomarkers) [24]. Advances in medical science are “buying time” for people with dementia to think about their future. However, in reality, people do not think this way at the time of diagnosis, and neither do their care providers, who are usually family members and expected to help them. All together, they do not want to plan ahead, because they follow the normative assumptions that it is their duty and commitment to provide care for a relative with dementia. If the assumption that informal care providers are the agents of care for people with dementia is made also at the systemic level of action and organisation of support, it is quite difficult to put the participatory role of people with dementia into practice. This is confirmed by Donnelly, Berley and O’Brien [25] who argue that the power of decision-making is left to the relatives of people with dementia as there is no opportunity for people with dementia to participate in decision-making. For instance, despite the fact that in Ireland the participatory role of people with dementia is legalised, there are bureaucratic procedures at the level of implementation, the organisational procedures that dictate pressures and immediate decisions about life courses. People with dementia who have not planned their decisions in advance are therefore excluded from decision-making and left to the decisions made by their relatives.

In contemporary practice of providing help or LTC, people with dementia are not involved in care planning, either because it is not possible for them to be included (e.g. regulatory provisions to help social workers explain to the relatives why it is relevant for people with dementia to be involved in the care process) or because they are not invited by other professionals to be involved in care planning (usually because they do not think they are able to be involved in the care process) [25]. Family members are automatically involved in planning, a practice that has become routine, while people with dementia rarely play a participatory role in care planning. When they are not excluded, they are most often involved only symbolically, for instance by attending meetings, but not being given the opportunity to talk about their wishes [26]. Such practices are also strongly affected by medical reports showing the extent to which dementia has already advanced and reduced the ability to think and judge. Involving people with dementia in care planning is also important as it informs them about their rights, possible solutions and forms of support [27]. By no means should participation be seen only as a technique or a specific method of work, but rather as a relationship, an attitude, an ethical commitment and a core value of LTC [7]. Or else, it becomes a tool for the realisation of illusory aspirations of equality and empowerment of people with dementia. Participation should become a philosophy or a mindset that creates a culture of support in which a person with dementia plays a central role.

4. Methodology of research on LTC for people with dementia in Slovenia

During the almost 20 years of drafting the Long-Term Care Act and the many heated debates among professionals, the topic of LTC for people with dementia has rarely been addressed in Slovenia. This is one of the reasons why the basic research project LTC of people with dementia in the theory and practice of social work (No. J5-2567) as the first national study in the field of research on the social dimensions of dementia was focused on LTC. The project applied the method of Rapid Needs and Services Assessment (RANS), which was developed in Slovenia at the Faculty of Social Work, University of Ljubljana, in order to identify LTC needs and plan the process of deinstitutionalisation [28]. The method is one of the fundamental research methods in social work, which is used to develop theory and practice in the core areas of social work in an integrated and hermeneutic way. It is a combination of qualitative research methods, techniques and approaches, among which grounded theory, ethnography and action research are predominant, but with regard to research objectives, it is also complemented with methods from the quantitative research methodology [29]. The purpose of the method is twofold: (1) on the one hand, the needs (scope, type, intensity, characteristics, etc.) are assessed, and, (2) on the other hand, the responses (those that are already known and available, and those that need to be developed in new ways or require action—change). Needs assessment is primarily an analytical assessment of the situation and the resources available. On this basis, the guidelines for new and needed resources are given. RANS is also a method used to make suggestions for necessary research-based interventions, which are feasible with proper planning.

In this paper, we present the results of three focus groups with key actors in the provision of LTC for people with dementia from three selected municipalities. The selection of municipalities was based on the results of the basic project community-based care for older people in Slovenia [30], in which five groups of municipalities¹ were defined with regard to institutional and community-based care, namely municipalities from groups 2, 3 and 5. A total of 29 participants from various organisations took part in the focus groups: social work centres, old people’s homes, health centres, general and psychiatric hospitals, municipalities and NGOs (pensioners’ associations, Spominčica—a dementia support organisation, adult education organisations). The following questions were discussed with them:

1. What are the needs of people with dementia that you perceive in your work?

2. What are the trends in the amount of support for people with dementia in your municipality?

3. What is your vision of helping people with dementia?

People with dementia enter the LTC system when they are diagnosed. The right to a diagnosis is written in the expired Dementia Care Strategy of Slovenia 2016-2020 [31] and in the proposed Dementia Care Strategy of Slovenia 2030 [2]. Our aim was to get a user’s perspective on this practice, therefore, 22 relatives of people with dementia from the selected municipalities were interviewed and the following topics were discussed with them:

1. What is your experience in getting an official diagnosis of dementia?

2. How did you and your relative with dementia react to the diagnosis?

3. What has changed in the life of your relative with dementia since the diagnosis and in your life?

The empirical data was collected from March to October 2022 and analysed using a qualitative data analysis method [32, 33] to create an overview of the LTC needs of people with dementia. We were interested in the ways in which the ‘human-rights-based approach’ was implemented, in particular: the right to early diagnosis, the access to care tailored to people with dementia and the right to organised care in the community. The results are described based on the mentioned themes.

We are aware of the fact that the survey is limited in that we only interviewed communities that were accessible to us, and professionals who later gave us access to the relatives. Unfortunately, this was the only possible approach at the time of the research, because after the epidemic of COVID-19 the field of research on the social dimensions of dementia was quite closed, access to people was limited, and people’s trust in research was low. We relied on the research methods available to us in order not to stigmatise the relatives of people with dementia even more than they already are in Slovenian society. In this context, we also ask the readers to understand our research results, which we present in the following sections.

5. Results

5.1 The right to early diagnosis

The relatives of people with dementia report that they associated the behaviour and actions of their family member with dementia, which seemed to indicate memory problems. Initially, the memory gaps were attributed to changes in age and therefore not given much attention. However, when they witnessed an unusual event with tragic implications, they became convinced that the memory problems were due to uncharacteristic ageing.

Memory loss is the second most common reason for relatives to think about dementia, next to the unusual event. When observing the behaviour of their family member, the relatives were quite specific in describing the areas where they observed a memory loss in their family member, which is certainly an important message for professionals and should be taken into account more in the process of providing professional support. The relatives report memory loss in the following areas:

• the inability to do household chores due to memory gaps, for example, cooking, doing the laundry,

• forgetting to eat (forgetting that they have eaten, what they have eaten, how much they have eaten),

• losing things (keys, wallet, money).

• disorientation at home and away from home (not remembering their home address, their own name).

• loss of vocabulary, inability to read various texts.

• forgetting the names of places and people.

In addition, the relatives described changes in their family members’ behaviour, habits and beliefs. They describe them as personality changes, for example, a father who had never been quarrelsome in his life suddenly started arguing a lot; a mother who had always been a caring housewife and wife changed overnight and left everything to others to do; a father who had always been good-humoured and liked company suddenly became sad, unemotional and unsociable. These changes led to an appointment with a general practitioner and a diagnosis. Early diagnosis is important because, in the early stages of dementia, a person can still make independent decisions about his or her life, which from a human rights perspective represents an opportunity to preserve human dignity and autonomy [8].

The diagnosis is experienced and described by the relatives of people with dementia with a range of emotions, for example, shock, fear and sadness. Shock is the most common emotion described by relatives in response to the diagnosis. For some, shock is the result of a rapid deterioration in the relative’s health and the diagnosis is only a confirmation of the suspicion of dementia. Similar experiences are also found in the literature, which states that family members also experience stigma when a diagnosis is made [1, 34].

Fear is common in those who have never heard of dementia or have little idea of the consequences it can have on their lives. It is a reaction against the unknown, the feeling of insecurity and ignorance of the changes that await them: ‘The doctors didn’t have much work to do, because my mother seemed to conceal the disease that was already fully advanced. So the doctors quickly found out through tests that it was dementia. As I didn’t know about dementia at the time, I came to terms with the diagnosis with great fear’. (Z 1).

However, those who know about the disease, are overwhelmed by a feeling of sadness when they are informed about the diagnosis, especially if a person with dementia knows the disease and does not want to accept it.

In addition, the relatives’ accounts show that the process of diagnosis varies. The relatives describe different experiences of how they made the conclusion about the diagnosis themselves, although the Dementia Care Strategy for Slovenia 2016–2020 [31] prescribes a uniform procedure for treating the patients: ‘A patient suspected of having dementia is treated by a specialist, a psychiatrist or a neurologist. To be seen by a neurologist, the patient needs a referral from a general practitioner, while a psychiatrist is available without a referral’. The story of a daughter describing a revolving door syndrome, a common problem in the medical model of help, is particularly striking: ‘We turned to doctors for help. First, we met a psychologist, who soon gave up, said that he could not help us and referred us to a general practitioner. The GP referred us to a psychiatrist and after the psychiatrist assessed my mother’s condition it became clear that a neurologist should also be involved. We went from door to door for a while, meeting various specialists, before we were lucky enough to come across a doctor who understood and supported us. The doctors went through their treasure trove of knowledge and tried to help us, but at that moment, when we were still so confused, we needed someone to do all they could and get to the bottom of it. The last neurologist looked into my mother’s health, examined everything that could have impacted the changes in her and discovered many things. In the multitude of tests and examinations, for the first time we were able to really understand what it was all about - Mum had been diagnosed with multi-infarct dementia. Besides, during this time the rest of us got to get acquainted with the guest who had been hiding in the corridors of our home for years’. (Z 20).

Diagnosis takes between a year and a few months. Sometimes it can take several years from the first problem to the diagnosis, either because the person neglects the first signs, or because the family doctor is inattentive to the initial signs. National guidelines on diagnosis should follow international guidelines to ensure that people with dementia receive a diagnosis as soon as possible and are entitled to follow-up care. For example, the Global Action Plan on the Public Health Response to Dementia 2017–2025 [35] states that ‘by 2025, at least 50% of countries will have at least 50% of the estimated number of people diagnosed with dementia’. Often the initial signs of the disease do not seem alarming for people who experience them. In contrast to the relatives who experience strong emotional reactions to the diagnosis, some people with dementia take the diagnosis for granted, mainly as resignation: ‘Stane did not react emotionally to the illness, but rather accepted it with indifference, even when he was asked about what he thought, he replied that if that was the way it had to be, so be it’. (Z 12) In some families, however, the members take on a caring, protective attitude and do not even mention the diagnosis to the relative with dementia: ‘As I’ve mentioned before, my mother does not even know that she has got dementia. We didn’t tell her because she would have forgotten it the next day anyway. Why tell her something she might not even understand, or that would depress her. We benefit from the moments when we are with her to talk or go for a walk together’. (Z 10) It is hard to say for sure that people with dementia are not aware of the disease, therefore, it is unacceptable for relatives to disbelieve them by feeling that they are unaware of the disease: ‘After her diagnosis, my mother’s life didn’t change much, she was already in her own world. Even when we talked to her about her disease, she didn’t understand the conversation, she claimed that she didn’t have dementia and that she didn’t notice that she was forgetting things. But she had forgotten that she had forgotten. For us, it was just the beginning, because it turned things upside down’. (Z 1) This belief is probably due to the fact that dementia still causes fear among people. The social dimensions of dementia are still full of stigma, dementia is still a mark, a sticker, a label and something bad.

The relatives describe how difficult it is to accept dementia of a family member. The information about the characteristics of dementia, the course of the disease and the treatment options are welcome, but sometimes they do little to help with the next step that the relatives need to take, which is to accept all the changes that the disease brings to the life of the person with dementia and to all those around them.

The family is faced with the challenge of how to change the patterns of life that have been established so far so that everyone can live together with dementia in the least stressful and most comfortable way possible. Often children choose to take their parents under their own roof, or a relative may move in with the person with dementia, which can be an additional barrier.

The biggest changes concern the abandonment of activities and tasks that help the person maintain their identity, as they present a new challenge for both the person with dementia and their relative. The person with dementia needs new roles within and outside the family, and needs time and space to assert them. He or she needs a lot of support and understanding from family members in establishing and asserting the new roles. Due to the disease, the persons experience a lot of negative emotions and losses on a daily basis, they do not understand what is happening to them, so our role is to help them cross the threshold of a negative understanding of the world and to guide them into a world where they will feel accepted in their new role. Doing so also requires us to accept certain risks and responsibilities, but at the same time, it gives the persons with dementia a better quality of life.

5.2 The accessibility of personalised care for people with dementia

The analysis of the empirical results of the focus groups manifests that people with dementia need a lot of help and support from other people in their daily lives, which in the current LTC means that most care is provided by relatives. Help from existing institutions is insufficient, poorly accessible or not available at all. Old people’s homes are full, with people with dementia waiting for months or years to be admitted. Home help is not evenly developed across municipalities, its scope (20 hours per week), in particular, is not sufficient to meet the needs of people with dementia. It is the relatives who ask for professional help, not people with dementia, in particular when they are no longer able to provide care for family members with dementia. They would also need help themselves, as they feel exhausted and helpless due to burnout. However, the professionals cannot offer them adequate solutions as the existing system does not provide services that would respond to the acute needs of people with dementia and their relatives.

Among the existing forms of support, care in old people’s homes appears to be the most adapted to the needs of people with dementia, as modern forms of care are developed along with the existing organisation of care and focus on meeting the needs of the residents. Similarly, this could be the case with home care, but its scope is too narrow to provide personalised and individualised care, tailored to the needs of people living with dementia [7]. We have recognised that we really need personalised plans for people with dementia, as highlighted in the World Alzheimer’s Report 2022 [1], where it is stated that every person deserves care and support that meets their individual needs and ensures they have access to the right information at the right time to make decisions about the whole course of their care.

In recent years, all municipalities have developed programmes to raise awareness of dementia among the general population, which is a relevant activity in terms of proactivity to identify the specific needs of people with dementia. In the municipalities, involved in our study, these programmes are implemented by public universities, old people’s homes and NGOs. Unfortunately, we did not experience the correct use of expressions during the focus groups, as even the professionals referred to people with dementia by using terms such as ‘demented’ or ‘demented people’ and felt that they were passive and unable to make decisions about their lives. Perhaps the guidelines for more appropriate language being developed by various NGOs around the world to help people with dementia could be of great help in changing our vocabulary. Swaffer [9] cites three organisations that between 2008 and 2021 adopted the guidelines for using the language that is no longer offensive to people with dementia: Alzheimer’s Australia (2009), Alzheimer’s Society Canada (2012) and Alzheimer’s Society of Ireland (2008). The example of these organisations in designing the Dementia Care Strategy for Slovenia 2030 [2] should be followed, as the draft document does not sufficiently highlight the correct use of words and expressions.

The issue most often referred to by our respondents is that the existing LTC system should be developed and upgraded, increasing both institutional and community-based forms of care, especially home care. Personal assistance for people with dementia could also be developed in the future. The staff in the current and, more particularly, in the future LTC system need to know how to deal with people with dementia, and they need to be educated and trained to be able to help them. Their work needs to be valued and better paid, as there is already a lack of qualified staff in this area.

When it comes down to the trends in support, our respondents mention the promotion of self-organisation of people with dementia in self-help groups, the increased presence of people with dementia in the community and their active role in developing support programmes. We find that the experts aim to encourage user organisations and activism on the part of the people with dementia, but do not find the right levers to make this happen.

The vision of help is reflected in coordinated care that is integrated and integrative, where the available services complement each other. No one benefits from too much competition between service providers. If we are to develop new forms of support and new services for people with dementia, they need to be coordinated. In two municipalities, the focus group resulted in an agreement on such cooperation; therefore, in one municipality it was agreed that the municipality’s Social Council would convene a meeting to organise the preventive dementia awareness activities, while in the other municipality, it was agreed that the providers of support for people with dementia would meet again to agree on how to tackle the problems at hand on the ground.

We need a national programme for early detection of dementia to help both to accept the taboo of the disease and to develop appropriate forms of help and services for people with dementia. At the same time, a register of people with dementia will be introduced, therefore, we shall gain a more accurate perception of how many people with dementia need organised help. However, as long as we do not even know how many people with dementia are living in our country and what types and stages of dementia they have, we will continue to spin in a vicious circle in which no one is satisfied with existing system of help.

5.3 The right to organised care in the community

Current trends in LTC and care for people with dementia highlight the need to create the conditions for living independently in the home environment for as long as possible by providing a base of LTC policies at national and local levels on these premises [36]. This ensures, on the one hand, the development of home care services and, on the other, the support for maintaining home and its possible adaptation in the event of sudden adaptations to ensure independent living in the home environment.

Traditionally, the concept of family care for old people in Slovenia has been established and supported by institutional care [30]. Intergenerational solidarity is formally reflected in existing legislation, which requires family members to care for the ageing family members when they are unable to care for themselves independently. There is also a strong cultural intergenerational solidarity based on reciprocity of help—the parents who provided care for their children when they were young can expect their children to provide care for them when they are dependent on other people for help in old age. This ‘caring culture’ [37] is also passed on to members of the extended family when older people do not have children. In addition, it is mentioned by our respondents in the study, as most of them encounter in their work the relatives of people with dementia who, in desperation and exhaustion, ask for help from professionals and institutions.

From a socio-cultural point of view, it is extremely important that people with dementia are provided with care in their own homes, as close as possible to their immediate and extended family members. This is reflected both in our previous research [28, 38, 39], as the contact with family members is extremely important in the lives of older people, and in the current research. Older people describe family as a community that provides them with help and support in all forms, from material and emotional to providing contact and companionship. They rely on their family members (most often their children) in all situations, also when it comes down to various life crises. In the context of LTC for people with dementia, this involves developing services and forms of support that aim to support both, people with dementia and their family members.

Institutional care is the last in a series of services for a person with dementia, as it is important for them to remain in their home environment for as long as possible. As home care is the only available form of community care and there are no available places in old people’s homes, people with dementia are forced to follow an institutional career path, which most often leads them to being admitted to an old people’s home.

First, they are hospitalised, often in a psychiatric hospital, from where they return home and are soon hospitalised again, and then after a while, they are placed in an old people’s home, often away from their home town. It is not uncommon for them to move from one old people’s home to another in order to be as close as possible to their familiar surroundings and, above all, to their relatives. The pointless multiple institutionalisations should be stopped, either re-institutionalisations in a hospital that are due to inadequate care in the home environment, or moving from distant old people’s homes to those that are closer to the relatives, so that they can visit more often, etc.

People with dementia have the right to live in their own homes and should be empowered to live in the community and receive care aligned with their wishes and preferences [35]. However, when life circumstances are such that institutionalisation is inevitable, it is important that the institution is in the home environment of a person with dementia, or in the vicinity. An old people’s home could provide a crisis accommodation to provide temporary institutionalisation until the living situation in the home environment has been sorted out (e.g. adjustments in a flat or a house), home help has been provided and life in the extended family has been organised in a way as to provide support in the home environment.

The existing response is not in line with the real needs of people with dementia, therefore, the research data is needed to identify what changes in the organisation of care provision (sectoral division, supply of care, resources) and the way care is delivered (services, work methods, role of users) are needed to create a long-term sustainable system of LTC for people with dementia. The existing services need to be reorganised by redesigning large institutions, dispersing services, ensuring coherence and changing the work of professionals. Along with reorganising existing services, new services and structures need to be set up by organising new spaces (forms of living, socialising and occupation), new forms of work and methods in various organisations (e.g. individualised care). The new services should be accompanied by new activities, by linking organisations with activities outside their own sphere of interest, providing more choice, more events and, in particular, ensuring the participation and involvement of people with dementia in the planning and delivery of services.

6. Conclusions

In Slovenia, the LTC of people with dementia needs to be regulated in several areas in order to respect fundamental human rights. Table 1 summarises the main findings of the research on the existence of a human-based approach according to Cahill [8].

The characteristics of human-based approach	The realisation of characteristics of human-based approach in Slovenia
1. The right to early diagnose	Partially (between 4 years and a few months)
2. The right to treatment after diagnosis	Partially (family members take over all tasks)
3. The right to personalised care	Partially (personal care plans exist only in homes for older people, not in community services)
4. The language of inclusion used by professionals	Not present (was not used in the focus groups of the research)
5. The right to organised care in the community	Not available (institutional care is prevalent but not accessible, same for home help)

Table 1.

The realisation of human-based approach in LTC for people with dementia in Slovenia.

Firstly, all people should have equal access to medical treatment and early diagnosis. The experience of relatives shows that there are various practices involved when it comes down to pinpoint a diagnosis, which leads to people waiting for years before they are actually diagnosed. During this time, the disease may worsen to the point where people with dementia are no longer able to make independent decisions about their lives. Cahill [8] critically observes that in ‘high-income countries’, only half of people are diagnosed with dementia, while in other countries, only 10% are diagnosed, which is not serve as an example in Slovenia. In terms of the realisation of human rights, we should strive for the right of every person to early medical treatment and diagnosis.

Secondly, the access to personalised care for people with dementia needs to be increased. The waiting periods for the provision of formal care in LTC are unacceptable as is the repeated institutionalisation of people with dementia, which does not respect their self-determination and participation in care planning. We need LTC in which people with dementia are active agents in their own care planning. A system of advance planning or planning ahead [21, 22, 23] needs to be developed to make the implementation of care tailored to the needs of people with dementia possible. In the Long-Term Care Act [6] the planning of LTC is provided as a method of support, which is a good basis for the development of ‘human-based approach’.

Thirdly, the right to organised care in the community is heavily limited due to the prevailing cultural and professional orientations that perceive people with dementia as vulnerable members of society whose voices are powerless, unheard and ignored. There is a need to create conditions in the society and at a local level that would enable people with dementia to express their need to live in a home environment, in their community and, to strive for a ‘dementia-friendly society’. The right to live in the community needs to be given more prominence in professional circles and at the level of policy-making. It should become the basis for new solutions in LTC.

We suggest that LTC in Slovenia for people with dementia is built on the experience from abroad, which highlights the rights of people with dementia to free, autonomous and participative decision-making about their lives.

Acknowledgments

This research was financially supported by the Slovenian Research Agency within the research program P5-0058 and the research project J5-2567 (Long-term Care of People with Dementia in Social Work Theory and Practice).

Conflict of interest

The author declares no conflict of interest.