Care of People Living with Dementia in Bulgaria: Between Over-Responsibility to the Family and Distrust in Public Health Services and Policies

Introduction. Deinstitutionalization and Care of People Living with Dementia in Bulgaria

In the last decade, informal care of people living with dementia in Bulgaria has received more public concern and become an important topic of state policy, in line with the European Union directives to support vulnerable individuals and groups and in response to the clear global trend of population aging. According to the latest data, 19.6 % of Bulgaria’s population is 65 years old and already more than 100,000 people have been diagnosed with dementia.^[1] From 2010 onwards the only two non-governmental organizations (NGOs) addressing at national level the problem of living with dementia—Alzheimer Bulgaria and Compassion Alzheimer—began running their organizations properly and produced important reports and surveys. In 2014 the government of Bulgaria adopted the National Strategy for Long-Term Care,^[2] followed by two Action Plans—respectively for the period 2018–2021 and 2022–2027.^[3] In the National Strategy for Long-Term Care the people living with dementia were mentioned only with regard to the costs to the country of care for older people, but later, in the plans they were already defined as “main target groups” and their relatives were defined as “extended target groups” for whom provision of extensive support should be provided in the home environment along with access to better social and health services, all under an ongoing national-level process of deinstitutionalization.

The NGO’s surveys and reports revealed that existing practices of family care in many cases followed postsocialist patterns and that they foster disempowerment, social isolation, and the depersonalization both of dementia sufferers and their carers. Not all of those Bulgarians caring for people living with dementia are obtaining comprehensive post-diagnosis support, help, and treatment, and mechanisms to ensure timely diagnosis and care pathways, such as are recommended in the World Alzheimer Report 2022 are completely lacking (Benoist and Weidner 2022). Along with the adoption of the National Strategy for Long-Term Care, in 2014 a draft of a proposed national strategy for the diagnosis, treatment and care of patients with Alzheimer’s disease and other forms of dementia was submitted to the Bulgarian Council of Ministers by a working group headed by Dr. Latchezar Traykov, Professor of Medicine at the University of Sofia. However, that document has yet to be officially published by the government, and Bulgaria, similarly to Romania, is currently ranked among the European countries that currently have no dementia plan.^[4]

The starting point of our analysis is the “Action Plan for the Period 2022–2027 for the Implementation of the National Strategy of Long-Term Care,” which followed the adoption of the National Strategy for Long-Term Care. There we find that a problematic gap continues to exist between the conceptual framework of long-term care, the actual practices existing in the country, and the overall assessment of the population’s needs. The Plan notes, for example, the increasing demand for residential-type services and that, according to the indicated statistics, there are vacant places in homes and centres for the accommodation of older adults living with dementia. That is set against the backdrop of a request to close specialized institutions in order to develop services in the community. The contradiction inherent clearly evident from that becomes even clearer on closer examination of the fact that people with dementia are one of the Plan’s main target groups (p. 7).^[5] It is explicitly emphasized that since 30 April 2022 331 people were waiting to be placed on the first request in a specialized institution providing residential care for adults living with dementia (p. 25). However, in the tables attached to the Action Plan, we find that 641 of a total of 832 vacancies are currently occupied in the 14 residential homes, and that 282 of the 321 vacancies are occupied in the 24 centres (pp. 13-4).

A complex and contradictory picture of the discrepancy between ideological assumptions and the real dimensions of care for people living with dementia is confirmed by the reports of Bulgarian non-governmental organizations. They shed even more light on the social attitudes and understandings of so-called “extended target groups”—the relatives and partners of persons living with dementia. Respondents to a study by Alzheimer Compassion, for example, identified both placing someone in a care centre or home and granting access to health care and services to provide concurrent support within a family home as amounting to equally serious problems.^[6] There was another report, this time by Alzheimer Bulgaria, which focused on the activity of the municipal bodies which are legally obliged to manage social services for patients with dementia. That report too established that the respondents who in this case were the employees of those bodies, found their own difficulties in giving precise information about the possible institutional and non-institutional forms of help and support, and even in defining them. To the question “Where should old people suffering with dementia live?”, a third of the respondents answered “in their own homes”, 40 %—“in hospices” and only a tenth said “in community centres”.^[7]

The documents and reports cited reveal “blind spots” both in both the conceptual framework and the implementation of social and health policies. To what extent are those “blind spots” errors and anomalies due to poor public advocacy for people living with dementia, and are they in any sense acceptable? Do they indicate persistent social inequalities and a lack of social solidarity in Bulgarian society as a whole? To what extent do they “naturally” aim for the promotion and adoption of a new model of state-regulated care for older people that is in sync with European Union (EU) directives for the development of sustainable social policies and practices of social citizenship? Or, conversely, are they the result of a fatal adherence to stable, decades-old models of dealing with dementia in institutions and in the private space of the home—an adherence that “sabotages” modern political and existential projects that empower and strive towards social inclusion of vulnerable individuals and groups?

In searching for answers to those questions, this paper will examine care not so much in an institutional and legislative but more so in a biographical context. We rely on 31 narrative biographical interviews, 15 semi-structured expert interviews, and 6 focus groups conducted within the framework of the project “Generational Models of Coping with Life Crises: Biographical, Social and Institutional Discourses” (2017–2023), funded by Bulgarian National Science Fund.^[8] The respondents are family caregivers of people living with dementia or Alzheimer’s disease, living in 5 large Bulgarian cities (Sofia, Plovdiv, Varna, Pleven, and Lovech), aged 45–65; experts from social and medical institutions; and social assistants at a private home care company. Of 38 respondents, 9 were men and 29 were women, all recruited with the help of patient organizations such as Alzheimer Bulgaria, or by lecturers in the Departments of Health Management at the four medical universities in the country in the four cities mentioned above. Help came too from Associate Professor Dr. Ignat Petrov, a retired specialist in psychiatry, gerontology and geriatrics, and a collaborator in the former Centre of Gerontology and Geriatrics at the Ministry of National Health and Social Welfare of the Republic of Bulgaria.

Conceptually, the investigation and analysis of the collected data give priority to oral history methods and especially to those of interpretative social research with their strong biographical focus. Biographical narrative interviews were conducted in the form of semi-structured conversations and were recorded with a voice recorder. In their interviews, respondents presented their subjective experience of caring and reflected on specific changes in their own social positions. The research interest in this case focuses not so much on “what happened” but on the subjective “meaning of what happened” in the context of the informal caregiver’s overall life story (Rosenthal 2015). The expert interviews are centred on the institutional position and resulting specific expertise of the respondents, while the focus groups rely on the similarity between the conversation initiated by the interviewer, and the everyday patterns of communication, thus avoiding the monologic and asymmetric nature of the narrative interview. The focus groups were used also as an effective instrument to “provide insight from socially marginalized groups regarding specific phenomena” (Scharlach et al. 2006, 136).

The strong biographical focus we set allows us to single out specific discursive encounters, respectively divergences between different ideological and value-based horizons of care, between public and private strategies for dealing with dementia. Such an approach responds to the call for the “individualization” of the experience of dementia raised by the state and NGOs in the public documents. That approach is discussed too in recent neuropsychological research that bounds the more advanced strategies for treating disease with personalization of care (Giannouli 2017). The respondents’ narrative presentation of the (inter)subjective and (inter)generational meaning of caregiving gives us access to the overall framework of their socially-formed experience, hence to the individual and social knowledge gained in their encounters with dementia (Winslow and Smith 2019). In retrieving and analysing that knowledge, we turn to what was done in previous qualitative research on family care. Our interview guidelines and the primary analysis of the data are oriented towards the “intertwined changed roles and reshaping of the caregiver’s life course” (Pearlin 2010). The main topics covered in the interviews and focus groups are these:

1. Life context and reorganization of family roles and relationships at the first manifestations of the disease;

2. Social and economic capital of caregivers, access to post-diagnostic services (information resources, day programs, education/training, legal and financial advice etc.);

3. Duration of care and specific problematic situations in households;

4. Relations with clinicians or other healthcare professionals (psychiatrists, neurologists, general practitioners, etc.);

5. Dimensions of informal solidarity—neighbourhood and community support;

6. Forms of social exclusion and poverty—economic aspects of care;

7. Emotional experience and the coping strategies of caregivers;

8. Recommendations for state policies and care practices.

We have therefore shared certain general observations on negative social and psychological effects on the well-being of caregivers (Brodaty and Donkin 2009; Campbell et al. 2008; Lethin et al. 2020) although we attempted to go somewhat further and intersect the narratives of families and experts’ experience of dementia. We wondered if they were constructed in a specific national context of rapidly and inconsistently changing social policies against a dysfunctional social care system and patterns of rigid value. Differently from the above-mentioned research, we are rather less interested in socially (non)relevant strategies chosen to deal with the actual disease, but in both the subjective and cultural dynamics of invention and implementation. Our main thesis is that the experience of caregivers in Bulgaria—like that of many families around the world—unquestionably represents a significant shift in their biographical trajectory; however, that does not necessarily mean only disempowerment and passivity in the face of the social and economic impact of dementia. As far as the shift in the Bulgarian case is rooted in particular entanglements of historical legacies and current transformation, it has left caregivers exposed in positions in which they are forced to assume too much responsibility and too much implicit criticism across the spectrum of state health and social services for оld people and those offered by the private sector.

The Trajectories of Living with Dementia

The narrative constructed from the interviews with people caring for those living with dementia makes visible what medical and social qualitative research defines as the “trajectory of the disease” (Riemann and Schütze 1991). However, the narrative we recorded tends more clearly to reflect the perspective of families or other informal caregivers rather than that of the care receivers, so to that extent it intertwines and reinforces two different trajectories. The first is bound to the manifestations of the disease, the “distortion”, “decline” and “loss” of memory and personal disintegration of the “patient”; the second comprises challenges, difficulties, crises and stressful situations that upend the everyday lives and routines of caregivers. It seems that both trajectories began in the moment of acceptance of the diagnosis, and attempts to make sense of it, although the interviewees emphasized that those moments were certainly preceded by а hidden course of a disease, of which they had become aware “too late”. Most of the interviewees reported that the entry point to “care mode” was marked by expressions of shock and confusion, which were followed by recalling and reflecting on neglected “signs”; of worrisome memory issues, mistaking common words, forgetting holiday dates, difficulty finding the way home and other such early signs of the disease that are well-known in the medical field as “early symptoms”.

The case of Father Angel Angelov, born in 1962, a lecturer at the Faculty of Theology, who for three years cared for his mother and father who were respectively diagnosed with dementia and Alzheimer’s, is an indicative example here. Father Angel admitted that he found the process of accepting the diagnosis extremely traumatic: “I hadn’t suspected anything, and when I took my mother to a psychologist for the first time and they got her to do some tests, I was horrified. She didn’t know what city she lived in.” But in the course of the interview, after several questions, it became clear that even though he had been “suspicious” for a long time, his concerns had often been displaced by the usual routine and immediacy in his communication with his parents:

My mother came to church every Sunday. We had a few minutes in the church and a daily phone call. I didn’t realize at the time that she was at a loss for words. My mother used 20 to 30 words in her conversation; and then I realized something else, that we indeed talk to each other using only a handful of words. When I’d ask her “How are you?”, she knew how to say “Yes, yes, I’m fine. No problem. Everything is alright” and for me everything was alright. Once, when I was seeing her off from church, I told her: “Hey, if you want, you can take the tram, not just the trolley”. She said: “A tram, tram, no, no, not tram”. Then I realized that she no longer knows what a tram is. And I realized that there were already many terrible problems. […] A lot was revealed to me, I read a lot on the Internet, a lot about this disease.^[9]

Another interviewee, Denislav from Plovdiv, born in 1976 and who worked in a bicycle factory, also remembered the moment of receiving the diagnosis as an abrupt or even catastrophic change of his perspective on his own life project.^[10] In the late autumn of 2016 he was preparing to go abroad for work when his uncle died. Now alone, Denislav’s grandmother moved in with Denislav and his sister, who were sharing a house at the time. Approximately a week before he left for his work trip abroad, Denislav said, “granny’s situation worsened a lot”. He took her to her general practitioner, from whom he learned that five years before she had been prescribed dementia medication. The old lady had not mentioned the matter to anyone and it appeared that she had not been taking her medication; Denislav was forced to cancel his flight and stay in Bulgaria. Unlike Father Angel however, he gave a clearer account of the early stages of the disease’s development, and recounted a number of times in the interview the years when his grandmother “showed symptoms” but was “still in her right mind”. For Denislav the “horror” took hold when she became incontinent and began falling out of bed almost every night. After the initial shock, the two grandchildren decided to look on the Internet to research the specifics of dementia; they then discussed the situation with the general practitioner, went to see psychiatrists and, echoing the words of another interviewee, “enlightened themselves about everything”.

Both the interviews shed light on misattribution of symptoms of dementia to normal aging, which in general is because primary care physicians receive inadequate training in the development of dementia and how to diagnose it (Benoist and Weidner 2022). In cases of late diagnosis, interviewees were very quickly faced with the second or third stages of the disease and accompanying waves of new “scary stuff” or “insane behaviours” for which they felt completely unprepared. In psychological terms they described such “scary stuff” as displays of anger and aggression, delusions (in other words, an absolute belief in things that are not real) and in many cases anxiety, partial or full memory loss, depression, disoriented wandering, refusal to take medication or maintain personal hygiene, and disturbed rhythms of sleep (Stavru 2015; Benoist and Weidner 2022; Bundzhulova 2023). For each of the interviewees, the moment when the parent stopped recognizing them and calling them by name, or the point at which they began self-harming, was a kind of unpleasant but cathartic experience which they likened to mourning. It forced them to “relearn the world” (Attig 1996) in a rather traumatic way and to re-evaluate personal beliefs and values; for Father Angel, it went as far as doubting his faith: as he said, “Someone loses faith for sure… I used to say to myself: Lord, why is all this?”^[11] For Denislav, it was a matter of coming to the conclusion that “absolutely nothing and no one can help you.”^[12]

Postsocialist (Gerontological) Legacies, Ageist Stereotypes and Social Stigma

The especially traumatic effect of the mnemonic piecing together of the care-receiver’s and the caregiver’s trajectories can be seen as resulting from the dissonance between active and passive knowledge of the disease. Denislav’s case clearly shows that his active knowledge of the disease was acquired not only when he was suddenly called upon to interact intimately with it, but also when he was consistently and reflexively searching for reliable and accessible information—in person from experts, online and via social media. Meanwhile, his passive knowledge was bound up with a markedly ageist popular notion dating from the socialist period which he had uncritically internalised:

When they gave my grandma her “Alzheimer” diagnosis, a word I can’t even pronounce properly, she started acting like those “sclerotics”. That’s what they were called during socialism; I mean they still call them that. Those people were always acting out at home and on the streets—she would forget to turn off the iron, wouldn’t take her change at the store; she wasn’t in her right mind at all. My wife was so embarrassed when we took her in to care for her. It’s both funny and sad…^[13]

In the socialist period, and especially after the 1960s with the establishment of the Centre for Geriatrics and Gerontology and its public activities, the term atherosclerotic dementia had become official. However, when used informally it was very quickly shortened, and downgraded to the simpler “sclerosis”. The condition was thought of as a relatively typical manifestation of old age, manifested in irreversible degradation of cognitive skills: “Now and then (i.e., before 1989) the Bulgarian society accepts this more as a consequence of aging. It accepts it to some extent as the natural development of things.”^[14] In its advanced state, sclerosis was seen as the cause of the senility and even insanity which caused the diseased to stop recognizing the social significance of their situation. People habitually violated social conventions, their partners and families began to be ashamed of them, while those from their wider social circles began to poke fun at them or to expose the lack of care for them. Even now, jokes and cartoons about grandparents with sclerosis circulate on Bulgarian internet platforms showing the tragicomedy of aging. We also remember stories about older people who would jump off balconies or who would become hopelessly lost in their home villages or even neighbourhoods; there were stories of people unable even to remember their own names. “Ignore them; they’re sclerotic!”—this phrase was frequently used and affirmed sclerosis as an insult, a dismissive reference to the social stigma attached to the disease.

This infantilising and discriminating discourse can be discussed as the result of three intertwining attitudes, those being first the traditional tendency of Bulgarians to alienate from the social model anyone who has irretrievably lost the ability to fit into accepted norms; then secondly there is a social reflex inherited from the socialist period to hide or cover up any behaviour deviating from the norm (“behind the curtains of society”) and thus to neutralise any anxiety associated with it (“not to expose ourselves”, that is, not to put the social order at risk) and thirdly, a persistent local and global influence both of a cultural trope of old age as second childhood and of popular scientific conceptions reducing dementia to simple cognitive decline and ultimate degeneracy (Jongsma and Schweda 2018, 414-20).

In practice, this assemblage of notions continues in force even today, regardless of the fact that since the end of the 90s, the medical term “dementia” has been used instead of “sclerosis”. However, stored away as passively held but always available knowledge the latter term is often used more or less as a tool with which to neglect the first signs of advancing disease—things like “forgetting” or “losing” certain words and for convincing oneself, like Father Angel, that as he said, “my mother/father was just getting old”. Furthermore—at least while the consciousness of stigma lasts—many older people who are experiencing or have experienced memory loss are prompted, as are their families, to try to hide and then deny the presence of “sclerosis”. Thus the mother-in-law of one of the interviewees accepted willingly enough a diagnosis of “brain atrophy”, while she felt extremely hurt by her relative’s fear of “dementia”. Similarly, for many years the mother of another interviewee kept up an act of being unable to go out in the city and visit her, because she was taking care of her own sister who was recovering from a heart attack; the truth was that the opposite was true and when the sister died everyone realised that the mother had actually been suffering from total loss of spatial orientation and that she was in fact suffering from dementia. The interviewee herself confessed that when she read in a local newspaper about “a famous actress passing away after an excruciating case of Alzheimer’s disease”, she started sobbing uncontrollably and was unable to compose herself for days after taking “that insult”.^[15]

From Lack of Care Mapping to Lack of Positive Public Framing of Dementia

Are the experiences described above the result of the reinforcement of the sense of stigma in the time since socialism, or are they a by-product of the observed depersonalisation of people living with dementia that occurs as the disease advances? Or are they perhaps an effect of the lack of the mediating agency of socially active citizens, who might be able to bridge the gaps between psychiatric and neurological expertise, popular stereotypes and practical or intimate knowledge of the disease?

In most of the cases we examined, relatives’ efforts to “enlighten” themselves about the nature of the disease ended in failure—in the first place because they were discouraged by experts, according to whom “nothing is known, and nothing can be done”. In the cases of Father Angel and Denislav, those two individuals were even lucky, because other interviewees had found it difficult even to obtain a diagnosis—which for many of them came only in the terminal phase of the disease, in many cases after years of shuttling the patient from specialist to specialist. The reason for that is simply that Bulgaria lacks “dementia care mapping”—the specific steps which should be taken after diagnosis, the agencies and medical professionals who should be involved at different stages of the disease’s course, as well as the provision of additional services for caregivers themselves such as self-help support groups. As Giannouli et al. (2019) have observed, in Greece, Romania and Bulgaria even lack clear medical and legal criteria and guidelines for evaluation and assessment of the status of dementia. Initial consultation for individual patients is usually with their general practitioner, who plays a key role in diagnosis as well as at a later stage when issuing the formal medical analysis the patient needs to apply to the Local Expert Doctor’s Commission (TELK, Teritorialna ekspertna lekarska komisii͡a) or to the Work Capability Assessment Commission (WCAC). The family doctor is in an especially important position in less populous areas, where referral to specialists is more difficult or even impossible. Examination by a neurologist or psychiatrist ends in most cases with prescription of inhibitors, and is not necessarily related either to long-term supervision (which is almost always accompanied by concomitant diseases), nor to referral to the Medical Advisory Committee (LKK, Lekarska konsultativna komisii͡a) or TELK, which would at least provide the minimal pension supplement. That is the first and most important reason for negative and pessimistic attitudes to the health care system among everyone concerned:

I usually receive them when they end up in hospital to be diagnosed. They get diagnosed and are given some treatment. And then I see them again if they need a TELK. (…) More often than not we don’t see them again. (…) If they want to see us, they have to pay to come to us.^[16]

The attitude towards the oldest patients worsens—simply put those who have taken a Hippocratic Oath lose their professional interest.^[17]

There are five specialized committees for the treatment of Alzheimer’s disease in hospitals, at Sofia, Varna, Pleven and Plovdiv, which is to say in large cities that are effectively inaccessible to old and sick people from remote parts of the country. Waiting for an examination can take 3–4 months which of course only exacerbates the negative effects of a delayed diagnosis. And even after diagnosis, patients’ carers are left without institutional partners:

Medical care goes as far as establishing the diagnosis. From then on, everyone forgets you. Your GP forgets you. The GP never does home visits for such sick people. And if you want to get a neurologist or a psychiatrist to your home, you have to pay.^[18]

Furthermore, the pessimism of the relatives is also fuelled by a lack of commercial scientific and positive artistic discourse that could create an accessible framework with a set of images through which the disease can be seen less negatively. The Centre for Geriatrics in Bulgaria was closed down long ago, and there is little interest in the subject among those not engaged with the practical aspects of social work, whether in medical and academic circles or among social researchers; indeed interest among the latter is especially weak. The only clear exception is Boryana Bunzholova, whose book, Life with Dementia. Angles on Elusive Attempts (2023) applies socio-analytic, phenomenological and psychoanalytic methods to discuss dementia as a social and sociological problem. And yet it is significant that the book relies much more on analysis of narratives from subjects living in the USA and Western Europe than on Bulgarians (Bunzholova 2023, also Fercher and Sramek 2018). Similarly disappointingly, the topic rarely attracts the attention of prominent Bulgarian artists, although an exception is the writer Georgi Gospodinov, the winner of the International Booker Prize 2023. Gospodinov’s book Time Shelter tells the fictional story of a clinic for people living with dementia, and recreates moments when the patients felt their happiest and safest (Gospodinov 2022).

By contrast with Greece, where the available psychosocial support structures for people living with dementia are few but still have significant impact in society (Giannouli 2017), in Bulgaria the only serious contribution to the raising of awareness of dementia as a social problem is provided by only a few NGOs.^[19] Those organizations create information campaigns, assist municipal authorities in building day care centres, publish manuals of good practice based on the experience and the expertise of professionals and stakeholders in Western Europe, and, albeit less often, offer also advisory support for relatives. However, the facilities of those organizations are mainly confined to big cities, and their funding is largely dependent on international projects; they are therefore unsustainable in the long term. In that sense, their activity can be considered not only as an exemplary model, but also as a symptom of the fact that dementia in Bulgaria continues to be thought of as a private matter. That is in contrast to care for cancer patients, or people with disabilities. Care for patients like those has in recent years become far more diverse, and now includes positive public representations. However, we have but one single example of an occasion when attention was momentarily paid to the problem of dementia. In 2018 three foreign feature films dedicated to dementia were shown in the House of Cinema in Sofia, their showings followed by public discussions. The events were conducted within the boundaries of the “Let’s Live Togetherˮ campaign, which was jointly organized by the Bulgarian Dementia Society, the Medical University in Sofia, the Bulgarian Academy of Sciences, Alexandrovska Hospital, and the Life with Dementia organization. The, in 2020 Alzheimer Bulgaria organized a one-off sports event under the motto “Let’s Outrun Dementia Together”.

The “Sandwich” Generation and the Sacrificial Mode of Care

Realizing one’s own unpreparedness for а life shared with a person living with dementia, and then having to endure social stigma and, perhaps more than anything, lack of adequate institutional and public support, embroils caregivers in a specific mode of overcommitment.^[20] We are reminded of our respondent Denislav’s words of realisiation that “absolutely nothing and no one can help you.ˮ^[21] All of this in turn causes carers themselves to experience at least partial and often complete social isolation, which threatens both their personal autonomy and their ability to fulfil the rest of their various social roles. For example, Denislav not only lost his chance to work abroad, but also indefinitely postponed starting a family with his girlfriend because “everything revolves around sick people” and “there isn’t enough money…” (while taking care of his grandmother he was obliged to look after his mother who was facing a major operation). For Father Angel his parents’ dementia changed everyday life beyond recognition, both depriving him of existential meaning and narrowing his social horizon:

This was a ridiculously dynamic time. Some sort of mad algorithm ensnares you. You go there in the morning. Make breakfast. Toilet. You leave them, then you go again. You have obligations, work, all these things. You try to finish everything because no one will consider your problems. You return again in the evening. If you get into this mad algorithm which to some extent hurts your whole family because they get overlooked, you start living only with this problem. On top of that, it tires out a person, and in this fatigue, irritation appears, and you start thinking: no one wants to help you. They don’t know your problems at all, they don’t want to get into them. And most importantly, you have no breaks.^[22]

Similarly to Father Angel, the majority of our interviewees were convinced that their efforts were meaningful and important, which motivated them not to give up their “heroic” everyday life. However, all acknowledged that at the same time their overcommitment to the process of caring exhausted their physical and emotional resources. They talked about “reaching a breaking point”, at which they felt “forced” or “obliged” to hide their relatives’ conditions from their social circle and to limit communication with the world at large. That was how they came to enter a mode of social isolation and depersonalisation, which naturally prompts indifference and alienation and triggers depressive states, sometimes to the point of requiring medication.

I have been my parents’ personal assistant for nine years, and before that I had a job, I was a musician, but I had already decided to stop working with music because I wanted to start a beauty salon, to have my own business. It so happened that my mother unexpectedly had a stroke, after which she was totally disabled. And then something turned 360 degrees… Her dementia was triggered, I had to stop working to take care of her. And indeed, life became radically different, nothing of what I had imagined came true. From then on, I started taking care of my mother, who in time decided that I was her mother and started calling me “Mum…”. And actually, the roles did reverse. My mother became my child and to this day my husband and I take care of her… You don’t know who will stay healthy and who will become sick over the years; still she has a mental problem, not only a physical one, and I lost my environment, I stopped doing my job completely and I could be away from home only for a couple of hours… There is nowhere she can go, we are sealed off from the world in ourselves—I, my mother and my husband.^[23]

Once I had to go to the village from Plovdiv four times in a single day. And actually, my mother then paid some attention to me and said: “Sonia, you can’t pass away with your grandmother!” I wasn’t eating, I couldn’t sleep, I lost masses of weight. I was totally depressed. I was dying along with her; that’s the truth. And I ended up with the same psychiatrist I had sent my grandmother to. The woman prescribed very mild antidepressants… I just ended up praying for her to pass away because it was such a pain for her. She had totally lost it. It was a nightmare.^[24]

We don’t have opportunities to go on vacation either… There’s no one to stay with the sick parent, we are limited, there has to be someone who stays with her for us to go somewhere—at most for coffee, because we can leave mother alone for about two to three hours. There is no problem with coffee, but we’ve talked that if we want to go on vacation, we can only rely on my sister.^[25]

Such stories about reaching breaking point clearly show that caring for people living with dementia in Bulgaria is perceived as a series of heroic and sacrificial acts, as a fateful burden that mobilises all an individual’s possible abilities but consumes all their resources too. On top of that we’re talking too about carers who are still in their highly active years—most of our respondents were women between 40 and 55 years old; by comparison, 62.5 % of respondents in the “Pilot Sociological Survey for the Needs of People with Dementia and Their Relatives” were of similar ages and 87.5 % of them are women. Their sex formed an additional factor doubling inequalities of position, considering that it is overwhelmingly women who look after their own households and children and have lower incomes into the bargain.^[26] One of the participants in the survey of Compassion Alzheimer described herself and her cohort as belonging to a particular generation, overburdened by responsibility for every generation in the family:

That’s why I say “sandwich generation”. They are children who are also adults—they have their own families and children, but they have to take care of them as well. They are in a tough position, sometimes forcing them to make hard decisions. This costs them a lot of emotional energy, guilt and whatnot. They have to receive public support, but they don’t and can’t in our country.^[27]

Being part of the “sandwich generation” the interviewees adjusted their household spending to cover the cost of medicines and sanitary materials, reorganized their homes or moved, left or changed jobs, gave up rest and entertainment. They felt guilt and shame because of certain manifestations of the disease; some carers had nervous breakdowns and others suffer from clinical depression. In reference to recent studies on caregivers’ burden in relation to their wellbeing (Funk, Chappell and Liu 2013) we may conclude that in the Bulgarian case both the negative cultural values attached to dementia and insufficient social support from both formal and informal sources have contributed to harmful experience of care. Furthermore, for many carers their obsession with care turned them into doctors and patients at the same time. Some have developed almost professional competence, but at the same time have experienced moments of complete resignation and helplessness. Thus, instead of empowering them, the moralizing regime of overcommitment they adopted in practice had disempowered them and “erodedˮ their own agency, unsettling and destabilizing them:

Almost every day. It’s been harder lately, yes. It’s got harder over the years. It weighs on you to rely only on yourself and you ask yourself—you are already at a certain age when something might happen to you too. Then you realize that come on, I’m my mother’s child and I help her and look after her, but I don’t have children and at some point if something happens to me, which is a real possibility, I don’t even know where I’ll go; I’ll just be in the hands of “The One Up There”, as they say. You get scared, you get really scared… Apathy takes hold of you, and you start feeling despair because you see you’re powerless and when there is no help from anywhere and when no one pays attention to you.^[28]

Stereotypes of Family Care versus the Burden of Dementia

Despite the “overwhelming burden” on them and their desperate need for support, most of our interviewees had been providing consistent and full-time home-care for at least three years, and doing it completely independently. Of a total of 10 respondents and 10 participants in focus groups, all between the ages of 40 and 65, only two women—both of them daughters—had placed their parents in private nursing homes or hospice care; four used the services of a paid sitter; three were being supported by municipal social services. On top of that, half of them were looking after two sick parents; only in the best cases did their spouses share caring duties. In their biographical narratives, the lack of any supportive environment was striking—neighbours, friends or more distant members of the family were rarely enlisted to help. Their distance was in most cases explained by the unpredictable and worrying behaviour of the dementia patients, who tended to fall, to harm themselves, perhaps even set themselves on fire; or they would exhibit severe irritability, or suffer from hallucinations. All involved were severely adversely affected by the disintegration of any form of social solidarity with vulnerable individuals and groups in local contexts.

Until now, no one’s ever asked me how I am; how I’m coping, how I feel… I apologize for crying, but even my relatives, who aren’t even in Sofia… No one finds it necessary to ask me how we are and what we’re doing. […] But I don’t want them to ask. No one’s interested in people with problems, and frankly they aren’t required to. […] That’s why I apologised for crying, because before that there was no occasion when I could be asked how I was. No one asked me, and I myself have no way of thinking how I am.^[29]

Any forms of solidarity were directed not towards protecting people living with dementia, but towards policing them. Before making a final decision to place her mother in a home in the capital, Vania left her in the hands of a paid caregiver in the small provincial town that was her birthplace. Vania had to deal with a constant stream of calls from neighbours, who complained of various “ridiculous incidents” and “strange manifestations” of the disease—and expected Vania to do something about it.^[30] But those same neighbours completely avoided contact with their sick and suffering neighbour.

The idea that only family members can provide the best care, that is, the moral imperative of care, is not only imposed from outside. Social assistants themselves and providers of unregulated care in homes, shared with us their sense that they were suspected of self-interested economic motives (“they consider you a second-hand person”). They said they were often treated as a threat or burdened with excessive expectations regarding the household. There is still the attitude that such work ought to be done only by pensioners or by people of low social status, people in difficult economic circumstances; people who “can’t find a proper job”.

The picture emerging from the biographical narratives reveals a belief that people living with dementia should be “kept safe” within the space of the family home—confined there in fact—and that image directly corresponds with data from sociological studies. According to a report from the above-cited “Pilot Sociological Survey for the Needs of People with Dementia and their Relatives,” 40 % of those surveyed believe that the best care for people living with dementia would be at home, however they should be cared for by trained nurses (46 % of the women who filled out the questionnaire think that). Only 14.3 % of respondents considered hospices and fully professionalized forms of care a good solution. In cases where daily home care is reorganised with additional help (from retired nurses, orderlies, social assistants or unqualified caregivers, domestic social patronage in other words), payment for such services is provided by relatives. Only when their resources are exhausted or when the disease advances is there any consideration public or private care homes.

What is the justification for continuing to care for people living with dementia within the family? What values, attitudes and behavioural stereotypes motivate it?

When asked outright why she didn’t place her father in a home after feeling completely physically exhausted from keeping up his hygiene, a 68-year-old woman, a general practitioner at a medical consultation centre in a metropolitan district, replied: “I know I have to, I know it will be better for him, but I can’t because we are blood.ˮ In similar vein, another respondent explained why she stopped working in order to devote herself to her sick mother-in-law (and “father-in-law in a wheelchair” with both legs amputated): “It’s because they’re our parents—we can’t just up and leave them.”^[31] Regardless of whether it is perceived as forcibly internalised or the result of the natural dynamics of generational relations, the notion that children have a “filial duty” to their parents retains its imperative force among generations of Bulgarians.

The results from the last wave of the European Values ​​Study show, for example, that generational solidarity in Bulgaria is stable at high levels: 76.6 % of men and 77.1 % of women believe that caring for their parents is their responsibility (also, see Fotev 2019).^[32] In that regard, some authors speak also of “a high sense of filial responsibility in non-western cultural groups (Funk, Chappell, and Liu 2013) and of “informally prescribed familialism”, highly developed in Southeastern Europe (Saraceno 2016). In Bulgaria, it penetrates both into the official socialist ideological discourse and into the postsocialist legislation. Thus Article 4 of the Family Code of 1985 asserted that “caring for the old, sick and incapable members of the family” is one of the “basic functions of the socialist family” (Brunnbauer and Kassabova 2012, 484) and the Family Code of 1992 (valid until 2009) in Chapter 7, article 69, prescribed that children of legal age “should care for their elderly, for those who can’t work or for their sick parents”.^[33]

For decades, the notion of the three-generation family as a reliable self-sustaining bio-socio-economic mechanism continues firmly to hold sway. To the question “What kept you going?” one interviewee answered:

Well, ought I to tell you? It’s the financial side of things. That there’ll be an apartment left behind which might somehow help my children. Believe me, it was that. I sacrificed myself so that we could have more. That’s how my life is; you can’t buy an apartment with a normal job nor can your children somehow buy one. That’s what kept me going. That something will be left behind.^[34]

The Use of Institutional/Formal Care as an Escape from Responsibility to the Family

The confinement of care within the home can be explained not only by the often self-imposed responsibility towards older parents or close relatives, but also by the interviewees’ own scepticism about the quality of formal care and services offered by the state. In most cases, the decision to place a parent in a nursing or residential home was preceded by hesitation or outright resistance. It is traumatically perceived as “avoidance of responsibility”, “betrayal” and “abandonment”, rather than as a way to allow carers room to normalize their own lives again. The main reasons for their hesitation were their awareness of the lack of trained personnel in residential homes, high turnover rates of employees, and generally poor living conditions and lack of communication with patients’ families, all of which carers knew would reduce their loved ones’ lives to something like a vegetative state of bare physical survival. The interviewees acknowledged too that there are problems with the private sector:

We made an attempt to place my mother in a home because at some point my father stopped being able to take care of her, regardless of how much we went over every day. It got too much for him. However, there wasn’t a specialized home for the treatment of people suffering from Alzheimer’s anywhere in Bulgaria. We were referred to an establishment in Dryanovo and I said that I would go and check it out and if I liked it, we would consider it. But I went to check it out and I was absolutely horrified. I could not even enter the home and returned. I even shouted: “No, I can’t leave my mother here.” I can’t under any circumstances.” The sick were tied to their beds. I walked into just one room, and I walked out and said there’s just no way I’m going to put my mother in there. We somehow managed on our own. Just entering a home like that… I don’t know who would leave their parents there.^[35]

I took my mother home from a hospice which cost me BGN 1,200 per month, because instead of improving, her condition worsened. They don’t do anything there but give her pills. We hired a good rehabilitator at her home, for BGN 60 per visit, my sister and I took turns going to her, and that’s how we got her back on her feet after the stroke. She has difficulty using one of her hands, but it works.^[36]

Distrust of institutional care reinforces the rigidity of familialism and stereotypes of filial duty, so that in the end the services supported by municipalities, such as food delivery, shopping, and cleaning remain the preferred option. The most common practice continues to be to employ someone—at an hourly fee—to help around the house and with the patients’ personal hygiene.

Even though efforts towards deinstitutionalization—including funding from European programmes—have led over the last two decades to the prioritizing of community services and day- or temporary care, examples of good practice are still hard to find. The Bulgarian state offers 24-hour accommodation in two main forms—homes and centres: “Family-type accommodation centre for adults living with dementia” is a family-like environment for a limited number people living with dementia and/or Alzheimer; perhaps up to 15 individuals. Such centres can be used in combination with other social, health, educational and other services and in accordance with the needs of the accommodated persons. The current number of these centres for the whole country is 25, all of them have a capacity of accommodation from 6 to 15 people; 9 of the centres are located in cities, none of them in Sofia. As for “Homes for adults with dementia”—specialized institutions providing a whole bundle of social services to people living with dementia or Alzheimer’s disease—there are a total of 14 for the whole country, of which only 4 are in cities (1 in Sofia).

There is a lack of official data on the number of private residential care places, which have a different legal status. A hospice is a medical facility registered under the Bulgarian Law on Healthcare Facilities,^[37] while a residential home for elderly adults with dementia is a social facility and does not necessarily offer medical care. A key problem in the field of private services, which are in any case inaccessible for low- and middle-income groups, is not the quality of service, which is usually satisfactory, but the so-called “unregulated entwining of flows, by which is meant the accommodation under one roof of older people with mental problems, people living with dementia or disabilities and generally healthy old people but who have disabilities. This leads to incidents such as fires, or injury; such events tend to end up finding their way into the news and only reinforce the perception that conditions in care homes are unacceptable. While there are homes that offer a good level medical care at, places in them cost far too much (up to a thousand euros per month) when the average national income is considered. High prices set by private entrepreneurs therefore, regardless of whether they offer residential care or day care and temporary care, in turn force care to remain home-based.

Dementia as a Disease of Close Family and Society as a Whole

It is by no means unique to Bulgaria that relatives of people with dementia there choose to provide care within the family and the home, while dealing with the impact of social stereotypes and while also risking their own life projects. A third of people worldwide prefer to hide a family member’s dementia diagnosis, while also risking “burn-out” through their attempts to meet patients’ daily needs. It is no coincidence that in gerontology, dementia is defined as a “disease of the relatives”: constant impotence in the face of the inevitable but unpredictable development of the disease puts caregivers’ thoughts of the future under a kind of psychosocial moratorium. There can be no expectation that the patient will improve or eventually take over managing the disease, as is the case with some other diseases or disabilities. Left without support, face to face with the disease, unable to escape the rigid structures and constellations of the family and isolated from the “normal world” on the one hand, and locked into the orbit of the existential fears and woes associated with dementia on the other: “You just feel how it drags you down and weighs on you especially when it’s someone close. It’s as if you are dying with them. You can’t do anything.”^[38]

That explains the interviewees’ strong criticism of the state’s role in the social sphere. If, in the words of Sonia, she is forced to deal alone with dementia because “her mother and father have abdicated”, for Denislav “the state wants to abdicate”. When asked on what important note he would like to end the interview, Denislav summarized the difficulties and challenges of care for people living with dementia in Bulgaria by pointing to the psychological pressure and that the social problem is displaced. Indirectly, he thus gave an explanation for existing social inequalities and regional imbalances and raised the question of how responsible state institutions are and how relevant public health and social policies:

I want to say that in this sense—this shouldn’t happen to anyone, because it’s a difficult job […] Here’s my situation—there’s no help, there’s no state––in the sense that there’s no income, and there are no programmes; in the sense that when you have a sick person, the state can somehow stimulate it. Because realistically, there were some politicians on the scene and they justified themselves by saying: “Well, don’t wait for the state”. Well, I’m not waiting! But everyone goes to work, pays their taxes, and all the state does is take the taxes! And tomorrow if I ask for something in return—we’re just talking about help here, I don’t want you to feed me; no, I just want some kind of structure to mobilize itself, so that I can go and find work, so that something can get done… ^[39]

The traumatic experience of social exclusion and unsupportive environments encompasses peoples’ lives in a way that confronts expectations of passing through certain life-stages and puts individuals in even more critical positions towards society and the state. Individuals are pitted against established conventions, cultural tradition and economic and social conditions. Denislav confided that after what he had been through with his grandmother, he decided not to start a family, because to do so would mean he could not help his parents; and because in the end it all came down to money. He concluded his comments on the topic by adding that “Everyone in Bulgaria is in the same position”, by which he meant the tragic mode of living with dementia in local contexts. Despite contemporary social science’s claims for intersectionality and overcoming a “tragedy discourse” against a “living well” discourse of dominant understandings of dementia (McParland, Kelly, and Innes 2017), the examined biographical narratives clearly show that popular conceptions of care in Bulgarian remain trapped by dichotomized views and models.

Conclusion

In contrast to the biographical narrative models of people with other disabilities or cancer, in the case of dementia we observe that relatives describe the burden of care and the hopelessness of the disease using a thematically uniform and negatively tinted narrative repertoire. The sheer amount of time and resources they devote to developing social and psychological coping methods leaves them no room to compensate for the deficiencies that arise from the shift in life trajectories. “At the entrance”, when they first realise they are encountering the disease, caregivers are left with no expertise of their own and no supportive public discourse and practices, and at the “exit” the absence of state assistance only confirms their distrust of institutions, distrust which has been steadily deepening in the meantime. Furthermore, even if they try to break the repetitive cycle they are in, to search for help from the outside world, they experience repressed and deeply internalised ageist and familial notions of care, which are continually socially validated. So in Bulgaria there is the talk of “sandwich caregivers”, individuals squeezed between on the one hand their own self-imposed adherence to paternalistic sociocultural stereotypes and their need to deal with discouraging practical procedures, and almost non-existing or inaccessible structures of public support on the other hand. Accentuating the historical dynamic of formal and informal care in Bulgaria—people living with dementia are completely “abandoned”. They and their caregivers are lost in a confluence of socialist and postsocialist notions of paternalism and familialism that have survived into a context of neoliberalism. Many live in severe poverty, have to contend with underdeveloped state services that are centred on the individual, and private social services that are of uncontrolled quality that tends to be poor. Incoherent state policies lacking sustainable development, together with the dominant cultural values of Bulgarian society, are one of the main points of difference between Bulgaria and Western European countries which have long-established traditions of regular reform and improvements not just in social care generally but particularly in care for people living with dementia.

In conclusion, although in recent years there has been no shortage of positive examples of deinstitutionalisation and active citizenship, both in terms of legislative initiatives and their concrete implementation (mainly in the agenda of the NGOs), the reality in Bulgaria is that the family continues to function as the repressive institution, and that is because of and together with public health and social policies.