SOCIAL PROTECTION OF PEOPLE WITH DEMENTIA IN HUNGARY

This paper presents the results of the study of main features and current state of social protection of people with dementia in Hungary. At present, the population of Hungary is rapidly aging and is decreasing quantitatively. Social and demographic changes as well as the increase of life expectancy affect the provision of social services for the population of Hungary. The aim of the paper is to provide an overview of social services delivered to persons with dimentia in Hungary. To achieve this aim the following tasks were defined as to be solved: to charcterise the organisation of social support for persons with dementia and the services provided. The study object − social policy of Hungary. The study subject − social services provided to the persons with dementia. The following research methods have been used: − theoretical − the secondary analysis of scientific-research sources on the problem under consideration has given the possibility to systematize and generalize the available data on current state of the problem; − empirical − observations and interviews with scholars and practical social workers have given an opportunity to analyse the Hungarian experience in social services provision to persons with dementia. The data gathered allowed to conclude, that in Hungary dementia is not considered to be among the social and healthcare priorities. In accordance with the Hungarian legislation, persons with dementia are not considered to be «people with disabilities» and therefore they are not eligible for financial or social benefits as provided to other persons with disabilities. Although the law provides for the state funding of normative day-care fees, daycare facilities are not available. Respite homes and long-term care institutions are very limited in number. State supported home-care is limited to the provision of meals at a low cost. Private institutions are inaccessible due to high costs. Adequacy, accessibility and availability of services in general do not respond to the needs of either people with dementia or the family carers.


Introduction
Social Work and Education, Vol. 5, No 2, 2018 8 This sector is the most low-paying among the Hungarian state social services. The rethinking of social work in Hungary began in 1989.
The analysis of recently rapidly growing scientific literature demonstrates that nowadays, thirty years later, the Hungarian practitioners and scholars refer to the problems of comprehension of history, development, formation, place and role of social work in modern Hungarian society, perspectives of social work and social services provision in Hungary (Budai, 2010;Bugarszki, 2014;Szabó, 2014;Szoboszlai, 2014). Despite the considerable interest of scientists to the above-mentioned problems, we believe that the further research in this area may include the issue of social protection of persons with dementia in Hungary. The aim of the paper is to provide an overview of social services delivered to persons with dimentia in Hungary. To achieve this aim the following tasks were defined as to be solved: to charcterise the organisation of social support for persons with dementia and the services provided. The study object − social policy of Hungary. The study subject − social services provided to the persons with dementia.

Methodology
The following research methods have been used: − theoretical. The secondary analysis of scientific-research sources on the problem under consideration has given the possibility to systematize and generalize the available data on current state of the problem. The conducted literature review is based on a wide range of trustworthy sources with a particular focus on reports of European Commission, textbooks, journals, and scholarly articles on selected research area. The following databases have been used after introducing the keywords (social work in Hungary, healthcare in Hungary, social work with persons with dementia in the EU/ Hungary): DBLP; Google Books; Google Scholar; JSTOR Search; Scopus, Vernadsky National Library of Ukraine; Web of Science; − empirical. Observations and interviews with scholars and practical social workers have given an opportunity to analyse the Hungarian experience in social services provision to persons with dementia.

Research results and discussion. Social and demographic changes in population
At present, the population of Hungary is rapidly aging and is decreasing quantitatively. Social and demographic changes as well as the increase of life expectancy affect the provision of social services for the population of Hungary.
Aging of the population is a long-termtendency that began in Europe a few decades ago. The tendency is displayed in the transformation of the age structure of the population and is reflected in an increasing share of the elderly, as well as in the declining share of working-age persons in the total population. The population of the EU-28 on 1 January 2016 was estimated at 510.3 million people. The share of the population aged 65 years and over is increasing in every EU Member State, EFTA country and candidate country, and Hungary is not an exception (see Table 1) (Eurostat. Statistics Explained, 2017). Within the last decade , an increase of 2.4 percentage points was observed for the EU-28 as a whole. In an attempt to look at future trends for population ageing, Eurostat's latest set of population projections (EUROPOP2015) were made covering the period from 2015 to 2080. In EUROPOP2015 the EU-28's population is projected to increase to a peak of 528.6 million around 2050 and thereafter gradually decline to 518.8 million by 2080, with population tendency to continue to age (from 29.3 % of 65 years or over in 2016 to projected 52.3 % by 2080) ( Dementia is a syndromeusually of a chronic or progressive naturein which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.
World Health Organisation (World Health Organisation, 2015) provides the following key facts on dementia: (i) Worldwide, 47.5 million people have dementia and there are 7.7 million new cases every year. (ii) Although dementia mainly affects older people, it is not a normal part of ageing. Very rarely dementia is found in people younger than 60 years old. The probability of dementia increases with age: about 5 % of people suffer from dementia in the age group of 65-74 years old, and about 30 % of people suffer from dementia in the age group of 85 years old and over. (iii) Alzheimer's disease is the most common cause of dementia and may contribute to 60-70 % of cases. It can also be caused by a variety of diseases and injuries that primarily or secondarily affect the brain, such as stroke. (iiii) Dementia is one of the major causes of disability and dependency among older people worldwide. (iiiii) Dementia has physical, psychological, social and economical impact on caregivers, families and society Dementia has significant social and economic implications in terms of direct medical costs, direct social costs and the costs of informal care. In 2010, the total global societal costs of dementia was estimated to be US$ 604 billion. This corresponds to 1.0 % of the worldwide gross domestic product (GDP), or 0.6 % if only direct costs are considered. The total cost as a proportion of GDP varied from 0.24 % in low-income countries to 1.24 % in high-income countries.
Dementia is overwhelming for the families of affected people and for their caregivers. Physical, emotional and economic pressures can cause great stress to families and caregivers, and support is required from the health, social, financial and legal systems.
People with dementia are frequently denied the basic rights and freedoms available to others. In many countries, physical and chemical restraints are used extensively in care facilities for elderly people and in acute-care settings, even when regulations are in place to uphold the rights of people to freedom and choice.
Eurostat's latest data (last update: 06-02-2018) demonstrate that the share of deaths of Hungarian residents related to dementias including Alzheimer is constantly increasing (see Table 2, Table 3 Table 3. 2011  2012  2013  2014  male  female  male  female male  female  male  female  Hungary  852  1652  869  1915  932  1973  935  2016 An appropriate and supportive legislative environment based on internationally accepted human rights standards is required to ensure the highest quality of service provision to people with dementia and their caregivers.

Organisation of social support for persons with dementia
On the basis of the evidence (Fedor & Patyán, 2010) currently available, it seems fair to suggest that two systems (the system of social protection and social care; the system of social workers training) have been formed in Hungary simultaneously. The system of social protection and social care was based on old institutional traditions, inherited the features of centralisation, hierarchy, paternalisticity and the medical-social approach . In this context, social services were provided through the development of institutional capacity.
K. Tausz's (Tausz, 2006) findings lend support to the claim that the Hungarian social policy developed typically to the post-Soviet EU member states. The Hungarian researcher defines this policy as a transitional social policy with no clear priorities for the development of well-being. Political discussions about social work in this country define it as «liberal social work», although it has always been closer to socialdemocratic social work in its values than to liberal social work.
Separate discussions are being held among scholars about social work as a practical activity, which in their opinion, detains clients in a dependent position, using social benefits. Experts demonstrate the increasing bias and skepticism against the real effectiveness of social work in this country. A new type of statism reacts to social problems at the state level, and not at the level of professionals.
In 2012 the provision of care in long-term residential social institutions was taken over from the county municipalities by the State, and the social institutions that were previously in county operation were transferred to state maintenance. In 2013 the State also took over the responsibilities related to the operation and maintenance of specialised residential social care institutions providing accommodation for people living with disability, psychiatric patients and people struggling with addictions (National Social Report. Hungary, 2014).
In this situation, social service providers are getting new roles. Social work, organised by the state, becomes more structured with moral problems and care provision, therefore, some professionals show greater skepticism about social work, and sometimes considering, that they do not need a diploma «for the delivery of food to the elderly». In fact, the state policy intensifies the process of deprofessionalisation (Patyán, 2015).
The Church. The State also cooperates with the private sector in the sense that the State provides financial support to each person receiving care in a state/private institution. Cooperation between the State and NGOs is only formal. It is limited to certain public events and does not cover social services.
Provision of social support to persons with dementia is regulated by: Act No. LXXX of 1997 on Persons Entitled to Social Security Benefits and Private Pensions, as well as the Funding for These Services (the Social Security ActTörvény LXXX, 1997); Act No. II on Social Security of 1993, which specifically mentions the organisation of day care centers and specialised care homes for persons dementia ; Act on Budget of the Republic of Hungary, which provides higher monthly normative state funding (approximately 30 % more) for nursing homes (either state or private) for people with dementia than for other homes for the elderly. Although the law provides for the state funding of normative day-care fees, day-care facilities are not available because local authorities do not set up day care centres on the basis of these low fees. The normative fees do not cover the full cost of weekly day care stipulated by law (Alzheimer Europe. Hungary, 2007).

Services and support provided to persons with dementia and their carers
(1) Day care. There are no day-care facilities for people with dementia in Hungary.
(2) Respite care. Respite care in the home is not available from the State. A limited number of private service providers offer this service but at a high cost.
Short-term residential respite care is available but only privately and at a high cost. In exceptional circumstances, respite care can be provided (subject to payment) in the long-term care wards of hospitals.
To provise long-term residential care the state/local authorities has opened nursing homes for a very limited number of people with dementia with waiting lists ranging from 3 to 7 years. By law, 80 % of the person's pension is taken to pay for this service. However, this amount is not sufficient to cover the monthly fee for the care provided. Consequently, families pay extra monthly fees.
There are only a few privately owned nursing homes in Hungary. Entrance costs (i.e. a down payment) (between EUR 12 000-20 000 plus the monthly fee for care EUR 600-700 net) make them inaccessible to most Hungarians.
The Charity Service of the Roman Catholic Church also provides long-term care services in seven care units (for approximately 200 people).
(3) Palliative care. Palliative care at home is not available. It is available in palliative care centres for people with cancer only and is partly funded by the state.
(4) Home help and personal assistance. Home help is one of the basic mandatory social services provided by local authorities to care for people, usually older persons, who are unable to care for themselves. Meals are one of the basic social services provided by local authorities, ensuring at least one hot meal a day for people in need of social assistance who are unable to provide this for themselves or whose carers are permanently or temporarily unable to do so. Local authorities must also provide meals for people who are unable to organise their own meals in any other way because of their age or state of health (Act III of 1993, Section 62). Due to financial limitations, many local authorities are unable to provide this service even though it is stipulated by law.
It is possible to obtain assistance with personal hygiene and assistance with eating and drinking from social workers who are employed by the local authorities, but at the full cost for them. Assistive devices are available, but the State does not compensate anything towards the cost. Monitoring in the home via alarm systems (special tele-alarm systems) are not available in Hungary for people with dementia. Some local authorities operate such systems for the elderly but they are not suitable for people with dementia. The State either does not provide services due to financial limitations and despite legal provisions on: assistance with mobility; assistance with shopping; assistance with housework; assistance dealing with incontinence; companionship/social activities; home adaptation/transformation; occupational therapy/ergotherapy.
Long-term home care is available from local authorities but only for a very limited number of people with dementia. Of the 24-hour daily care necessary, a maximum 2-hour service is offered against payment. Generally speaking, the carers who provide this service are not trained for the task and are unwilling to stay with the person with dementia alone. Thus, in about 99% of cases, long-term home care is provided by family carers, who need psychosocial support and proper training. In the absence of social support from the State, carers have to bear the burden alone and many end up mentally and physically exhausted with financial difficulties. The Hungarian Azheimer Society operates a help-line and provides free of charge personal consultations on request to family carers throughout the year, but counselling for people with dementia is not available. There are no provisions for holidays either for people with dementia or carers. The Hungarian Alzheimer Society provides training for carers whenever funding is available (Alzheimer Europe. Hungary, 2007).
(5) Work/tax related support for people with dementia and their carers. There are no protective measures for people with dementia who are still in paid employment. In fact, a person who has been diagnosed with dementia is often dismissed from his/her job. People with dementia are not entitled to any tax refunds or benefits, any direct payments to pay for social services or for employing a person to provide home care services, any financial assistance with home adaptations etc. as in Hungary dementia is not considered a disability.
Carers are not entitled to paid time off work or flexible working hours to enable them to care for someone with dementia. Those who take unpaid time off work to care for a relative may easily lose their jobs and would not be entitled to any benefits. If carers are entitled to care benefits, the period of time spent caring is taken into account when calculating the pension. However, it is rare for people caring for someone with dementia to be entitled to care benefits.

Conclusions
The following institutions and bodies are responsible for social support of persons with dementia in Hungary: the Ministry of Social Welfare and Labour, the Ministry of Health, local authorities and the Charity Service of the Roman Catholic Church. The State also cooperates with the private sector in the sense that the State provides financial support to each person receiving care in a state/private institution.
Social Work and Education, Vol. 5, No 2, 2018 15 Cooperation between the State and NGOs is only formal. It is limited to certain public events and does not cover social services.
As under the current Hungarian law, people with dementia are not regarded as «disabled», they are not entitled to any of financial or social benefits, which are granted to other disabled people. Although the law provides for the State funding of normative day-care fees, daycare facilities are not available because local authorities do not set up day-care centres on the basis of these low fees. The normative fees do not cover the full cost of weekly day care stipulated by law. Respite homes and long-term care institutions are very limited in number. State supported home-care is limited to the provision of meals (in many towns and villages) at a low cost. Private institutions are inaccessible due to high costs. Adequacy, accessibility and availability of services in general do not respond to the needs of either people with dementia or the family carers.