Social support systems
Organisation and financing of social support to people with dementia and carers
The organisation of social support for people with dementia and carers
The Hungarian Ministry of Social Welfare and Labour, the Ministry of Health, local governments in the country and the “Service of Charity of the Roman Catholic Church” are all responsible for social support to people with dementia/dependent elderly people. In Dementia Centres, social workers provide social and legal assistance to families caring for people with dementia. They are also responsible for diagnosing dementia. Unfortunately, there are only 84 such facilities in Hungary and waiting lists are long (from 2-4 months). General practitioners who first come into contact with people with memory problems tend to see this as a natural part of ageing so many people with dementia do not get help from dementia centres in time.
The health care and social systems are both involved in the provision of long-term institutional care. 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.
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. 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. There are no day care facilities, and respite homes and long-term care institutions are very limited in number.
If a person with dementia has no spouse, his/her children are obliged to care for him/her. Children of the person with dementia often have to give up their jobs in order to do so due to a lack of financial resources to pay for private care and as there is no adequate social support available (i.e. no day care and limited home care services). Chances of returning to the labour market afterwards are very slim. In the absence of social support from the State, carers have to the bear the burden alone and many end up mentally and physically exhausted with financial difficulties. To make matters worse, there is still a great deal of stigma attached to dementia in Hungary.
The overall funding of social support for people with dementia and carers
Private institutions are virtually inaccessible due to high costs. State supported home-care is limited to the provision of meals (in many towns and villages) at a low cost. People with dementia and their family carers are not entitled to home care benefits because dementia is not regarded as a ”disability” under existing Hungarian law. Financial resources are very limited at local government level. Therefore, applications made by carers of people with dementia are mostly refused because they are not disabled. Owing to the high cost of Alzheimer medications the majority of people with dementia cannot afford to buy them. Only 50% of the cost is covered by the Social Security. The Hungarian Alzheimer Society is lobbying to change this to 90% (or 70% minimum) as the cost of Alzheimer drugs is very high compared to the average income of Hungarian citizens.
There is no regular State financial support of Alzheimer associations. However, once a year the Hungarian Alzheimer Society is entitled to apply for State grants, as are all other Hungarian NGOs. The available funding (should the application be successful) is very low, particularly when compared with other NGOs. Dementia is not currently regarded as a health care priority in Hungary.
The legal framework surrounding the provision of social support
As under current Hungarian law, people with dementia are not regarded as ”disabled”, they are not entitled to any of the financial or social benefits which are granted to other disabled people. The Hungarian Alzheimer Society is lobbying together with the Hungarian MEPs to bring about positive changes in view of the new UN Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. It hopes that this will result in dementia being put on the Disability Act’s list which determines entitlement to regular financial support and for families to finance external carers. Hopefully, this Act will make possible the creation of day care or even temporary institutional care. On 21 September, the Hungarian Alzheimer Society established a dialogue with the Hungarian Social and Labour Ministry to this end. People with autism were recently added to the list after a period of hard lobbying.
The main general legislation of relevance to the provision of social support amongst other things to people with dementia and carers is as follows:
- Law of 1997 on Health
- Act II on Social Welfare of 1993 which mentions separately the organisation of day-care and nursing homes for people with dementia (but day care facilities for people with dementia are not actually available in Hungary).
- The 2007 Act on the Budget of the Republic of Hungary 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.
The drafting of a new Social Act is in progress, which will hopefully take into consideration the changed requirements and the role and responsibility of the State and local governments. A uniform caring system will hopefully be created in 2007.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
According to the Hungarian Alzheimer Society, available services do not respond to the needs of either people with dementia or the family carers.
People from ethnic minorities
There are no special provisions for people with dementia and carers from ethnic minorities. They are entitled to the same support as that given to other citizens.
Services and support for people with dementia and their carers
Types of care
There are no day care facilities for people with dementia in Hungary.
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.
Long-term residential care
State/local government owned nursing homes accept a very limited number of people with dementia for which there are waiting lists ranging from 3 to 7 years. By law, 80% of the person’s pension is taken to pay for this service. In the majority of cases however, this amount is not sufficient to cover the monthly fee for institutional care. Consequently, families must pay extra monthly fees.
There are only a few privately owned nursing homes. Entrance costs (i.e. a down payment) render them inaccessible to most Hungarians. Entrance costs are between HUF 3 million (EUR 12,000) and HUF 5 million (EUR 20,000). Excluding the entrance costs, the monthly fee for care is HUF 150,000 (EUR 600) to 180,000 (EUR 720) net. The average pension in Hungary is HUF 65,000 (EUR 260).
The “Service of Charity of the Roman Catholic Church” also provides long-term care services in seven care units (for approximately 200 people).
Palliative care at home is not available. It is available in palliative care centres and partly funded by the State but it is only accessible to people with cancer.
Monitoring in the home via alarm systems
Special tele-alarm systems are not available in Hungary for people with dementia. Some local governments operate such systems for the elderly but they are not suitable for people with dementia.
Personal assistance and home help
It is possible to obtain assistance with personal hygiene and assistance with eating and drinking from social workers who are employed by the local governments. But service users must pay the full cost of these services. Assistive devices are also available but the State does not contribute anything towards the cost. The following services are not available in Hungary:
- Supervision taking mediation
- Assistance with mobility
- Assistance dealing with incontinence
- Assistance dealing with skin care
- Companionship/social activities
- Home adaptation/transformation
- Occupational therapy/ergotherapy
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 that they should do so.
Assistance with shopping, housework, transport and laundry is not available. Due to financial limitations and despite legal provisions, many local authorities are unable to provide this service.
Psychosocial support and training for people with dementia and carers
The Hungarian Azheimer Society operates a help-line and provides free personal consultations on request to family carers throughout the year. Information is also available on its website, in publications, books and through awareness campaigns etc.
Counselling is not available for people with dementia but the Hungarian Alzheimer Society provides regular counselling to carers free of charge in Budapest and elsewhere if required. 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.
Work/tax related support for people with dementia
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 tax refunds or benefits on the basis of incapacity as in Hungary, dementia is not considered a disability. They are not entitled to tax refunds or incentives for employing a person to provide home care services, to directive payments to pay for such services, to financial assistance with home adaptations or to reduced prices/cost free television and radio licences or public transport. However, all Hungarian citizens over the age of 65 are entitled to free land transport within the country. A diagnosis of dementia does not in itself entitle a person to any benefits or reductions.
Work/tax related support for carers and carer allowances
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.
Unless otherwise stated, information provided by Eva Himmer (Hungarian Alzheimer Society) in September 2007.
 The annual per capita state contribution for long-term institutional nursing and caring for the elderly and sick persons
Last Updated: mercredi 15 juillet 2009