Social support systems
Organisation and financing of social support to people with dementia and carers
There is as yet no specific action plan for the organisation of the welfare of people with dementia in Estonia. However, the Ministry of Social Affairs recently ordered the Estonian Gerontology and Geriatrics Association to research into the care needs of people with dementia. This research, which was finalised in March 2007, was carried out in cooperation with the Estonian Association of Alzheimer’s Disease. The research report has been presented to the Ministry of Social Affairs, which will, on the basis of this report, take measures to develop and fund services for people with dementia and their carers. National welfare service standards are also being drawn up by the Ministry.
The organisation of social support for people with dementia and carers
The highest authority, with regard to social support and its legal framework of organisation as well as the existence of regulations, is the Estonian Ministry of Social Affairs. As social welfare and health care are both under the jurisdiction of the Ministry of Social Affairs, the relationship/interaction between the two is intensive.
The general welfare of people with dementia is organised by the local government which is best acquainted with local life. The local government can decide whether to provide services itself or to purchase them from private or public organisations. The local government is only under the obligation to organise/provide care for childless elderly people living alone. It does not intervene if the person has “legal subsistence” (i.e. children or even grandchildren who are obliged to provide or arrange care for the parent or grandparent).
In order to be eligible for services, people have to have their needs assessed. Elderly people may be offered a geriatric assessment. Geriatric assessments were introduced in 2004. They consist of a single assessment to determine clients’ needs and to provide them with suitable services covering health care, nursing care and welfare services. The geriatric assessment team is composed of a physician, a nurse and a social worker. An international standardised tool is used for the assessment. Services are then provided on the basis of each person’s needs and financial situation. Elderly people with dementia can use all the services provided to the elderly for as long as they are able to do so and/or as long as the local government is able to provide such services. If the person cannot cope with these regular services, he/she is usually put in a nursing home. Services for people in need of assistance are mainly provided in special social welfare homes.
The overall funding of social support for people with dementia and carers
Funding for social welfare comes from local government budgets, the State budget and various other sources. The State budget provides local governments with funds for social welfare mainly via the Estonian Health Insurance Fund  but the local governments may also have to use their own budgets to finance services. However, there are over 200 municipalities in Estonia and some of them are very small. Consequently, those which do not have the necessary funds to offer a full range of services sometimes group together and provide services jointly (Ministry of Social Affairs, 2005). Voluntary organisations, churches, foundations, commercial associations and non-profit organisations can all provide social services.
There is some financial disagreement linked to the provision of services. For example, when long-term or short-term nursing care is provided in a medical care institution it is funded by the Estonian Health Insurance Fund (EHIF), but when similar nursing care is provided in a welfare institution it is not funded by the Health Insurance Fund and must, on the contrary, be completely funded by the service users themselves. This problem has been acknowledged and solutions to it are actively being sought.
Providers of social services may charge users or their families for their services. According to the Family Law of 1994, spouses are legally obliged to provide maintenance for each other. Similarly, children and kinsfolk are legally obliged to take care of their elderly relatives. However, if they are unable to do so or if an elderly person does not have any relatives, the government must assume responsibility for his/her care.
The State does not support the Estonian Association of Alzheimer’s Disease and the latter has not asked for any support from the State. The association does not have paid staff so all its activities are based on the work of volunteers. The Estonian Association of Alzheimer’s Disease comprises specialists from different fields (neurologists, psychiatrists and social workers), who are actively involved in their field and are specialised in diagnosing dementia, therapy and the welfare of people with dementia.
There are no self-help organisations in Estonia.
The legal framework surrounding the provision of social support
Dementia is not mentioned in any national acts.
The Constitution of the Republic of Estonia (28 June 1992) contains statements about the family’s duty to care for its members who are in need and the State’s duty to support services provided by volunteers and the local government:
- §27 The family has a duty to care for its needy members.
- §28 The State shall promote voluntary and local government welfare services.
The Local Government Organisation Act (2 June 1993) §6 defines the competence and tasks of local governments in organising local life. One of the functions of a local government is to organise, in the rural municipality or city, social assistance and services as well as welfare services for the elderly.
The Family Law Act (12 October 1994) defines family members’ mutual obligation of maintenance and custody, and the provision of care. The relevant paragraphs and chapters are:
- § 21 Duty of maintenance of spouse
- § 22 Duty of maintenance after divorce
- § 64 Duty of child who has become an adult to maintain parent
- § 66 Duty of grandchild to maintain grandparent
- § 68 Maintenance of step-parent and foster parent
- § 69 Support for other family members
- Chapter 11 Guardianship
- Chapter 12 Curatorship
The Social Welfare Act (8 February 1995) establishes the organisational, economic and legal grounds for social welfare and regulates relationships evolving in social welfare. The principles and purposes of social welfare are: “the observation of human rights, the responsibility of persons for their own and their family members’ ability to cope, the obligation to provide assistance if the potential for a person or family to cope is insufficient and the promotion of the ability of persons and families to cope [§3 (1)].”
The welfare of the elderly is discussed in §27 of this law which states:
In order to assist the elderly to cope in surroundings familiar to them and to have a life of equal value with other persons, rural municipality governments and city governments shall:
- establish opportunities for cheaper alimentation (food);
- ensure the accessibility of information concerning services provided and establish opportunities for the use of social services;
- ensure opportunities for interaction and hobbies;
- ensure the security and independence of the elderly living in social welfare institutions, respect for their private life and the opportunity to participate in decision-making pertaining to their physical and social environment and future.
All laws mentioned above form part of a framework for the organisation and provision of services. Welfare services for the elderly/people with dementia have not yet been validated by any governmental service standards. Standards for services have been validated in Tallinn and the State is in the process of creating them for use at national level. It is likely that national welfare standards will come into force in 2009.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
The services provided to people with dementia and their carers are not adequate and accessible. The ability of local governments to organise and provide services is very different. Small governments and rural areas are less developed than bigger cities. In cities, the organisation and accessibility of services is better. In the last couple of years, diagnosing dementia has improved a lot, but the development of services has not improved as quickly.
Services specially targeted at people with dementia respond to their needs. Other more general services to which they may be entitled (e.g. home care) do not necessarily meet their actual needs.
People living in rural areas
As stated above, the ability of local governments in rural areas to provide services is often not as good as that in larger towns.
People with different types of dementia
National statistics on the diagnosis of dementia are collected separately for Alzheimer’s disease and for vascular dementia but only for out-patient admission. In the case of mental and behavioural disorders related to the use of psychoactive substances, statistics for dementia are recorded separately for out-patient admission. Other forms of dementia are not recorded separately in statistics. They are all classified as general dementia. There are no services specifically designed for people with different types of dementia.
People from ethnic minorities
Data is not collected on ethnic origin and there are no services specifically designed for people with dementia or their carers from ethnic minorities.
Younger people with dementia
Precise data on the age of people with different forms of dementia is not available as in statistics based on age, dementia falls under section F00-F-99 which includes all mental and behavioural disorders. Age-based statistics are available for people presenting primarily with Alzheimer’s disease (G30) but not for other forms of dementia. The national social welfare service providers collect data on diagnoses but not according to gender, nationality and age.
People with dementia under the age of 63 (who are not yet entitled to a pension) may be considered as disabled. If they wish to apply for disability status and are of working age, their capacity to work must be evaluated by an expert team and a rehabilitation plan drawn up. The evaluation team is selected nationally but they are entitled to choose from among different service providers a team that is conveniently located and appropriate to their needs.
There are no services that are specifically designed for younger people with dementia.
Services and support for people with dementia and their carers
Types of care
Day care is insufficient because day care services for people with dementia are only available in two major cities, namely Tallinn and Tartu and in special sections for people with dementia in three Estonian nursing homes (in Merivälja, Iru and Koeru).
The service is organised by local governments, which also cover the major part of the expenses. The person with dementia has to pay for meals, medicine, care and nursing supplies (diapers etc.) as well as for transportation costs (if this is arranged).
Day care is generally organised by the institutions that are administered by the local government, but one NGO in Tallinn also provides this service.
Respite care in the home is not available. However, there are short-term and long-term residential respite care services. These services are organised and funded by local governments. Several NGOs also provide residential respite care. The local government funds respite care for people who do not have legal sustenance (i.e. a child or grandchild who is legally obliged to provide for them). Those who do, must cover the cost of respite care themselves.
Services for people with dementia are provided in some specialised units created near welfare institutions. This may take the form of day care (e.g. day care in a social centre or near a day centre for the elderly or in a social accommodation unit as a separate department) or long-term residential care in an adjusted unit in a nursing home/retirement home. However, the majority of people with dementia are still cared for in general, rather than specialised nursing or service homes.
The service user and his/her legal subsistence must pay for a place in the nursing home if they are able to do so. If they are unable to do so, the local government may pay part or all of the cost.
The State does not cover the cost of nursing. However, this may be partly or fully covered by the local government, which evaluates the economic situation of the person in need of the service and of his/her legal subsistence i.e. to determine whether or not the person and his/her family have enough resources to cover the nursing costs. The local government may take between 85% and 100% of the person’s pension to cover the cost of nursing. Sometimes, the person is left with part of his/her pension for personal use.
The cost of long-term residential care varies considerably (EEK 5,000 to 15,000 per month). It depends on where the home is located, what kind of services it offers, whether nursing products are needed (e.g. incontinence pads) and whether the person needs extensive supervision. Nursing homes in towns are usually more expensive than those in rural areas.
There are no palliative care services for people with dementia in Estonia.
Monitoring in the home via alarm systems
Services providing a tele-alarm system do not exist.
Personal assistance and home help
The following services are not provided at home to people with dementia in Estonia:
- Assistance with personal hygiene
- Assistance/supervision taking medication
- Assistance eating and drinking
- Assistance with mobility e.g. lifting, moving and walking
- Assistance with skin care (please see below for information regarding pressure sores)
- Companionship/social activities
- Occupational therapy/ergotherapy
People with dementia, who live at home and have a need for the above-mentioned services, but do not have relatives to take care of them, are accommodated in nursing homes. In nursing homes for long-term care, these services are provided (except for occupational therapy/ergotherapy). Home maintenance services are not offered to people with dementia who have carers/family as all kinds of care must be covered by the carers/family. If the family has the available resources, it can purchase services from private entrepreneurs.
The treatment of pressure sores is a service offered by home nurses, appointed by general practitioners (GPs). This service (nursing, treatment of bedsores and other nursing procedures) is financed by the Health Insurance Fund and is free of charge for the service user. The service is more widely available in cities and larger towns. In rural areas, there may be some problem with the availability of the service but the State has done a lot of work in order to improve availability and the service is improving every year.
Assistance dealing with incontinence is provided by NGOs. The State covers 40% of the cost and service users must pay the remaining 60%. This service is considered insufficient.
Assistive devices are usually provided by NGOs and private companies. They are partly funded by the State and partly by those needing them. However, there are not enough assistive devices available. If the devices provided by the State are all in use and a person cannot or does notdoes not want to be put on a waiting list, he/she has the right to obtain the devices at his/her own expense i.e. without financial support from the State.
Home adaptations are organised by local governments. People may be entitled to cost free home adaptations or may have to partly or completely fund them themselves. The price charged for the service depends on the service user’s economic status and on the existence of legal subsistence. The service is provided by the local government, which also contracts NGOs and self-employed entrepreneurs and business organisations.
Assistance with housework is provided by local governments, NGOs and business organisations. Providing this service is part of the commitment of local governments under the Local Government Organisation Act. They can also purchase this service, in which case, the service providers selected are usually NGOs.
If provided by a local government this service can be either cost free/provided in kind or partly or completely funded by the user, depending on his/her level of income and on whether he/she has “legal subsistence”. If provided by NGOs and business organisations, the service is completely funded by the service user. In this case, the cost depends on the market conditions.
Help with the preparation of meals (including meals-on-wheels), assistance with shopping, laundry services and transportation services are organised by local governments. Depending on a person’s level of income and available means of support, the service is either completely or partly funded by the service user. The service is organised by local governments and it can be provided by the institutions of the local governments or by NGOs. These services are considered insufficient by the Estonian Association of Alzheimer’s Disease. Transportation and laundry services are not uniformly available throughout the country and are more common in cities.
Psychosocial support and training for people with dementia and carers
There is no general information service to inform the public about the availability of services. Information about different services is provided by local government social workers. There is no Internet service for information or for counselling either and no telephone help-line.
Members of the Estonian Association of Alzheimer’s Disease and the Estonian Association of Gerontology and Geriatrics provide some counselling on a voluntary basis. They and some educational centres for health and social care workers also provide training for carers and in welfare institutions if a need is expressed but not on a regular basis as it is project-based. Apart from this, carers do not have any access to training.
There are no services providing holidays to people with dementia or their carers.
Work/tax related support for people with dementia
There are no protective measures for people with dementia who are still in paid employment. People with dementia are not entitled to tax refunds or benefits on the basis of personal incapacity or for employing someone to provide home care services. Similarly, they are not entitled to direct payments to pay for services or to reduced prices for television licences, radio licences and public transport. However, a person with dementia is entitled to make use of all benefits based on old age (for elderly people with dementia) or based on disability (for people with dementia of working age).
For example, although there are no state reductions on televisions and phones, various telephone companies offer cheaper package deals for senior citizens in order to gain clients.
Similarly, the Law on Public Transport (adopted on 26.10.2000) allows local governments to validate bargain prices on parish and city transport lines (§5) and defines target-groups for state-wide benefits which public transport service providers are obliged to offer cost free or at a reduced price e.g. free inner-state transportation (on railways, highways and waterways) for severely disabled adults as well as reductions of up to 50% on inner city public transport for disabled people (§29).
In addition to the benefits mentioned above, local governments can grant extra benefits to the elderly and to families with a large number of children according to §5 of the same law. The transportation service providers can also make additional reductions and such reductions are indeed being made. If public transport providers make reductions themselves, the State does not cover the costs.
Tax refunds for home adaptations are available but are not based on a diagnosis of dementia. The terms and procedures for giving grants are determined by local governments. They are dependent on people’s economic status and the existence or absence of legal subsistence. As for other forms of social welfare, home adaptations are covered by the following laws: the Family Law Act, The Local Government Organisation Act and The Social Welfare Act.
Work/tax related support for carers and carer allowances
Carers are not entitled to paid or unpaid time off work in order to care for a person with dementia but they are entitled to flexible working hours.
The State does not subsidise pension fund contributions for carers who give up work in order to care for a person with dementia.
Carers do not receive tax benefits/incentives for the care that they provide. However, according to the Social Welfare Act they are entitled to a payment if the person with dementia has been diagnosed with a high level of disability. The local government defines the terms and procedures for the granting of this payment but may decide not to grant it to carers with a high income.
According to §23 of the Social Welfare Act of 1995 (supplementary social benefits paid from local government budget), carers have a right to apply for carer subsidies from the local government. §23 states:
- Rural municipality governments and city governments may grant and pay supplementary social benefits from a local government budget subject to certain conditions and procedures established by the local government council.
- Rural municipality governments and city governments may grant and pay the caregiver’s allowance to caregivers and guardians (with active legal capacity) of people over 18 years of age according to the terms and orders established by the local government council.
Carers receiving this allowance are expected to support the person in everyday activities and provide care services at home.
Otherwise, there are no special grants/subsidies for the carers of elderly people with dementia.
Unless otherwise stated, information provided by Eve Võrk (Estonian Association of Alzheimer’s Disease) between April and September 2007
- European Commission (2006): MISSOC – Mutual information system on social protection: Social protection in the Member States of the European Union, of the European Economic Area and in Switzerland: Comparative tables
- European Observatory on Health Systems and Policies, Health Care Systems in Transition, HiT Summary for Estonia, WHO Regional Office for Europe, http://www.who.dk/document/e85516sum.pdf#search='HiT%20summary%20AND%20Estonia
- Ministry of Social Affairs (2005), Health and Long-term Care in Estonia: National report, April 2005, unpublished report.
- English translations of the following laws can be found at: http://www.legaltext.ee : The Family Law Act (12 October 1994), The Social Welfare Act (8 February 1995), The Constitution of the Republic of Estonia (28 June 1992), The Local Government Organisation Act (2 June 1993)
 In 2001, the EHIF was created and replaced the existing Central Sickness Fund. It covers 94% of the population and is responsible for contracting health care providers, paying for health services and refunding medication costs amongst other things. In 2003, the EHIF started to cover expenses for long-term care, nursing care and some home care (Hit Summary, 2004).
Last Updated: mercredi 15 juillet 2009