Social support systems
The organisation and financing of social support for people with dementia and carers
The organisation of social support for people with dementia and carers
According to the Social Welfare Act (710/1982) social support is organised in the following way: The Ministry of Social Affairs and Health is responsible for general planning, guidance and supervision concerning social welfare and the Provincial State offices are responsible for planning, guidance and supervision concerning social welfare within each province. The Ministry of Social Affairs and Health has a programme and guidelines for the regional development of social protection. The ministry formulates guidelines and recommendations concerning social protection. The Ministry of Social Affairs and Health draws up legislation and guides its implementation. It prepares targets for social welfare and health care and an action programme for each four-year electoral term that is adopted by the government in office. The programme includes a decision on resources that is examined each year in connection with the state budget.
Finland's municipalities are in charge of the tax-based funding of social welfare and health services for all their inhabitants. The organisation of social services and the provision of income support are arranged by each of Finland's 431 municipalities (social services include elderly care services). Municipalities take care of the planning and implementation of social welfare. Municipalities organise social services for their residents, provide social assistance to people living in the municipality, pay social allowances to their residents, organise guidance and counselling on social welfare benefits and other forms of social security and their use, provide information on social welfare and other forms of social security and organise training, research and experimental and development activities concerning social welfare and other forms of social security.
The municipalities may provide services themselves or arrange them in cooperation with neighbouring municipal authorities. A municipality may also contract services from another municipality or from a private service provider. The state supports this local organisation of services through allocations of state subsidies. The composition of services is not defined in precise detail by law, which means that services may differ from one municipality to another. Nevertheless, it is stated in law that certain basic services must be available in all municipalities. The public sector plays a central role in the development of social protection. Social and health care services, provided privately or by associations, supplement those organised by municipalities and offer an alternative to them.
The main policy aim is that as many older people as possible should be able to live independent lives in their own homes, and in a familiar social and living environment. Living at home is supported by rapid access to professional social welfare and health care services. Residential services and different forms of institutional care are provided to people who can no longer manage to live at home. In order to carry out this policy, each municipality is expected to have an up-to-date policy strategy concerning care for older people that safeguards their social rights. The strategy should include a service development programme, the starting points of which are to ensure a good quality of life for older people, their self-determination and independence, regardless of their functional capacity. Services should start from the client and cooperation with relatives and between service providers and the client's family should function smoothly.
The overall funding of social support for people with dementia and carers
Services and support are funded through general taxation. A fee for service basis is used in the private sector.
The legal framework surrounding the provision of social support
Perustuslaki (731/11.6.1999 – came into force on 1.3.2000) - The Constitution safeguards economic, social and educational basic rights for all people living in Finland. The state and the municipal authorities guarantee that these basic rights are respected. Services and income protection are guided by legislation: all residents in Finland are by law guaranteed access to social welfare (social services, benefits and income support). The aim of the social welfare system is to provide high quality and sufficient services to all members of the population. In the Constitution it is stated, that those who cannot obtain the means necessary for a life of dignity have the right to receive indispensable subsistence and care. The public authorities shall guarantee for everyone adequate social, health and medical services.
The improvement of clients' status in social welfare is provided by the Act ‘Laki sosiaalihuollon asiakkaan asemasta ja oikeuksista’ (812/22.9.2000 – came into force on 1.1.2001) - Act on the Status and Rights of Social Welfare Clients (unofficial translation). This Act lays down the key legal principles concerning the participation, treatment and legal protection of social welfare clients. The purpose of the Act is to promote client-orientated services, the confidentiality of client-service provider relationships and the client's right to quality social welfare and good treatment.
‘Hallintolaki (434/2003- came into force on 1.4.2004) - Administrative Procedure Act’. The aim of this Act is to achieve and promote good administration and access to justice in administrative matters. This Act contains provisions on the fundamental principles of good administration and on the procedure applicable in administrative matters. When for example applying for social benefits, this Act defines how a decision should be made and communicated to the client and how clients can appeal against a decision. In the Act it is defined how authorities should guide clients in the application process and in completing an application, and how they should provide clients with a written decision including the reasons for the decision.
‘Potilaslaki (785/1992 – came into force on 1.3.1993) - Act on the Status and Rights of Patients’. This Act shall apply to the status and rights of patients in health care and medical care. In this Act, patients’ rights to good care and treatment are defined as well as principles concerning access to care and the right to have necessary information. In March 2005 a change in this law came into force (containing new provisions) the aim of which was to improve clients’ access to care in a reasonable period of time as well as their right to have an individualised plan for examinations, care and medical rehabilitation.
‘Sosiaalihuoltolaki (710/1982 – came into force on 1.1.1984) - Social Welfare Act’. This Act defines certain services as follows: ‘social welfare’ means social services, social assistance, social allowance and related measures intended to promote and maintain the social security and functional ability of the individual, the family and the community. In this law social services and benefits are defined. The municipalities are responsible for organising these services for their inhabitants. A change in this Act came into force quite recently (1.3.2006) and it introduced the right to have a quick access to service evaluation within a reasonable period of time for people over 80 years of age or those who are receiving special care allowances on the basis of the National Pensions Act.
‘Laki sosiaali- ja terveydenhuollon asiakasmaksuista’ (734/1992 – came into force on 1.1.1993) - unofficial translation: Act on client fees in social and health-care & ‘Asetus sosiaali- ja terveydenhuollon asiakasmaksuista’ (912/1992 – came into force on 1.1.1993) - unofficial translation: Decree on client fees in social and health-care. Both this law and the decree define how payments for social services, such as home care, but also for short-term care and long-term care in institutions, are determined. For example, fees for long-term institutional care are determined on the basis of the client's income. They may be set at up to a maximum of 80% of the client's net income. The fees are the same for both social and health care institutions. Clients in long-term institutional care are left with no more than 20% of their net income after fees, at least EUR 80 a month. There is an annual ceiling for public healthcare service fees.
’Laki vammaisuuden perusteella järjestettävistä palveluista ja tukitoimista’ (380/1987 – came into force 1.1.1988) & ‘Asetus vammaisuuden perusteella järjestettävistä palveluista ja tukitoimista’ (759/1987 – came into force on 1.1.1988) - unofficial translation: Act and decree on services and support for disabled persons. In this law and decree, certain kinds of services are defined, such as transportation services and home modifications. A disabled person’s right to counselling and adaptation training are also defined. This is a secondary act compared to the Social Welfare Act.
‘Kansaneläkelaki (347/1956 – came into force on 1.1.1957) - National Pensions Act ja Kansaneläkeasetus (594/7.12.1956 – came into force on 1.1.1957) - National Pensions Decree’. In this Act and Decree, details of the pensioners’ care allowance are defined. The pensioners’ care allowance is intended to make it possible for pensioners (i.e. people who receive a pension) with an illness or disability to live at home, as well as to promote home care and to reimburse such pensioners for extra costs incurred as a result of illness or disability. It can be paid to people aged 65 or over or to people under 65 who are receiving a full disability pension, rehabilitation subsidy, individual early retirement pension, special assistance for immigrants, or earnings-related old-age pension paid to the under 65s as a follow-up to a disability pension. The care allowance is granted if the pensioner’s functional ability has diminished to such an extent that his/her capacity to look after him/herself and to handle ordinary everyday activities without assistance has deteriorated on account of the illness or injury. Depending on the degree of assistance or supervision needed, and on the amount of extra costs incurred, the pensioners’ care allowance is paid according to the lower, higher or special payment category. The care allowance is tax free.
‘Sairausvakuutuslaki (1224/21.12.2004 – came into force on 1.1.2005) - unofficial translation: Health Insurance Act’. In this Act, there are definitions for drug reimbursement as well as for the reimbursement of travel costs that are caused by examinations and the treatment of a disease as well as reimbursement for expenses for private care. The sickness insurance reimburses a portion of the cost of prescribed medicines. Reimbursements are usually granted at the pharmacy on the production of a 'Kela card', which is issued by the Social Insurance Institution.
‘Omaishoidon laki (937/2.12.2005 – came into force on 1.1.2006) Family Carers Act’. The aim of this Act is to promote informal care by providing sufficient social and health care services and continuity in care and by supporting the work of informal carers. This Act defines allowances and services to which family carers, who look after older person, for example, are entitled. The municipality and the person providing care draw up a care agreement that includes a plan for care and services. In 2006, the minimum caregivers allowance was EUR 300 per month. There is no upper limit on the allowance, which is taxable. The caregiver who has made an agreement with the municipality is entitled to employment pension accrual, on the condition that he or she is not already on a pension. The municipality also covers the caregiver's accident insurance. People receiving a caregivers allowance are entitled to two free days a month during a period when the nature of the care they have provided has been very demanding. During this statutory free time, the municipality is responsible for providing care to the elderly person.
‘Tieliikennelaki (267/ 3.4.1989 – came into force on 1.4.1982) Road Traffic Act.’ In this Act, it is stated that there is a special parking permit for conveying disabled people.
In the Act and Decree on taxation ‘Tuloverolaki (30.12.1992/1535- came into force on 6.5.1993) - unofficial translation: Income Tax Act’ and ‘Tuloveroasetus (30.12.1992/1551- came into force on 6.5.1993) - unofficial translation: Income Tax Decree’, there are definitions of tax deductions on the grounds of invalidity e.g. handicap caused by disease. In the Act, there is also a definition of the reduction of tax solvency (that can be caused by high medical expenses).
‘Laki toimeentulotuesta (1412/30.12.1997 – came into force on 1.3.1998) – Act on Social Assistance’. Social assistance is “last resort” financial assistance under social welfare, the purpose of which is to ensure a person’s or family’s basic living costs (e.g. for an apartment, health care, day care for children when needed) and help them to cope independently. Social assistance is used to ensure that the person or family has at least the minimal living standard necessary for a life of human dignity.
’Eläkkeensaajien asumistukilaki (591/28.7.1978 – came into force on 1.1.1980).’ The pensioners’ housing allowance can be granted to people over 65 on a low-income by the Social Insurance Institution.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
There are problems in both adequacy and accessibility of services: the services vary from one municipality to the next. For example there are evident deficits in adequacy and accessibility of adaptation training and day care aimed especially at people with dementia. There are deficits in home care and rehabilitative services.
Recognising and responding to the specific needs of people with dementia is not so well developed. Services are not very flexible and specific needs are not recognised or adequately met.
Finland’s Slot Machine Association (RAY) raises funds through gaming operations to support Finnish health and welfare organisations. For this purpose RAY, which is an association, has the exclusive right in Finland to operate slot machines and casino table games, as well as to run a casino. Under the terms of the Slot Machine Funding Assistance Act, RAY can grant assistance to incorporated, non-profit societies and foundation for the purpose of promoting health and social welfare.
The Alzheimer Society and most of its local chapters receive funding from RAY for their projects. In addition to this, many municipalities co-operate with local associations.
People living in rural areas
Innovative measures are needed if services are to be provided in rural areas. In Lapland, for example, a memory clinic bus is used with memory testing and counselling services.
People with different types of dementia
Some local associations provide information separately to people with Lewy body dementia, Alzheimer’s disease and vascular dementia.
People from ethnic minorities
There is limited support for people with dementia and their carers from ethnic minorities. For example, in the Alzheimer Association in Helsinki there is a counselling service for people who speak Russian and throughout Finland, there is written information in Russian on memory disorders and dementia. This is funded by RAY (the Slot Machine Association). However, this is insufficient.
Younger people with dementia
There are certain subgroups whose specific needs are not yet well known: The specific needs of younger people with dementia and their family carers, as well as people living alone, are not very well catered for.
However, people with dementia under 65 years of age have slightly better possibilities to get rehabilitation services than older people.
Services and support for people with dementia and their carers
Types of care
According to a study carried out by the Alzheimer Society into the quality and availability of services for people with dementia (Tervonen, 2005), there are clear deficits in the provision of day care services in Finland. According to this study, 36 % of municipalities stated that they did not have day care for people with dementia. Another problem is that even if there is day care in municipalities, it does not necessarily take into account the special needs of people with dementia. This means that day care is not provided on a rehabilitative basis. Day care is partly funded by the State (the municipality) and partly by service users. The latter pay a maximum of EUR 12 per day.
Some Alzheimer or dementia associations provide day care and the municipality purchases places for people with dementia in these day care centres. In some associations, there are currently projects to develop a rehabilitative approach to day care with financial support from the Slot Machine Association (RAY). The associations work in close collaboration with the municipalities and the aim is to implement this service as a part of the official services available.
Respite care at home
Respite care at home exists but the availability of this service is rather restricted (at least in some smaller, rural municipalities). This kind of service is mainly offered by private service providers and some NGOs (e.g. the Red Cross). The State does not finance respite care at home at all, so service users have to pay for it themselves.
Some projects have been developed by Alzheimer and dementia associations in order to provide sitting services but the aim of these projects was to support the functional capacity of a person with dementia by means of rehabilitative activities, as well as by giving informal carers some free time.
Short-term residential respite care
The municipalities are responsible for organising residential care, but short-term care for people with dementia should be rehabilitative and individually planned etc., and this is currently not the case. The main aim of respite care is to support the provision of home care and if short-term care is not rehabilitative, the patient’s condition and/or functional capacity could deteriorate during the care period. This, in turn, could further affect the family carer’s situation and the continued provision of home care.
Short-term residential respite care is partly financed by the State and partly by the service user who may be asked to pay up to EUR 26 per day. Private service providers also offer residential respite care and short-term care services.
Long-term residential care
Long-term residential respite care is available but it tends to be offered to people who are in a very bad condition rather than to those who need it. Fees for long-term residential care are determined on the basis of the service user's income (up to a maximum of 80% of his/her net income). This means that people in long-term residential care may be left with just 20% of their monthly income although there is a minimum of EUR 80 per month. The fees are the same for both social and health care institutions.
Private service providers also offer long-term residential respite care.
Palliative care at home is available but this varies from one municipality to the next. It is partly funded by the State and partly by service users. Continual care is charged on a monthly basis. The amount to be paid by the service user depends on the amount of care needed, his/her monthly income and the size of his/her family.
The inpatient wards of municipal health centres and home nursing services are jointly responsible for the end-of-life care of people with cancer. There are also private service providers and private hospitals which offer palliative care at home to those who can afford it.
Palliative care in an actual centre is available and is partly financed by the State. Service users contribute towards costs in the same was as they would for full-time residential respite care i.e. up to 80% of their income.
Monitoring in the home via alarm systems
Municipalities provide a tele-alarm service to those who have been assessed as needing it. People living alone and/or who need a security system are given preference. Service users have to contribute towards the cost of the service. They are usually charged a monthly payment on the basis of their income.
There is a strong interest in tele-alarm systems in the private sector. Systems are being developed and it is already possible to purchase this service from private service providers.
Personal assistance and home help
General personal assistance
Assistance with personal hygiene is available and partly funded by the State. It is part of the support services for home care. People’s needs are first evaluated and then a service and care plan is drawn up which specifies which services they should receive. Private service providers also offer assistance with personal hygiene.
Supervision/assistance taking medication is classed as a home nursing service and is partly funded by the State. It can also be obtained from private service providers. Many people with dementia experience problems taking medication, especially those who live alone.
Assistance with eating and drinking is available but this service is currently insufficient. Whilst a meals-on-wheels service exists and is partly funded by the State, people who need assistance to actually eat their food and drink have to rely mainly on private service providers and help from their informal carers.
Assistance with mobility (e.g. lifting, moving and walking) is insufficient. Whilst the service exists and is partly funded by the State, many people do not have enough opportunities to get out as there are not enough assistants. There are, however, volunteers.
With regard to incontinence, municipal health centres give disposable equipment to people with some serious diseases (e.g. diabetes, cancer and fistula patients) free of charge and also lend them the devices they need for their care. People with dementia with severe incontinence are entitled to free incontinence pads. To receive these devices or pads, clients need to obtain a cover note from their health centre doctor. It is also possible to purchase disposable incontinence pads from private sector suppliers.
Assistance with skin care is classed as home care/nursing or assistance with personal hygiene and is partly funded by the State. It can also be purchased from private service providers.
Companionship, social activities and occupational therapy
Companionship and social activities are not funded or provided by the State other than in the context of day care. If classed as an actual service in a day care centre, it can be partly funded by the State but service users must also contribute towards the cost. In addition to traditional service centres (the term “service centres” includes apartments and services which inhabitants can choose to buy such as cleaning, meals and washing clothes) and day care centres, municipalities, associations and parishes run activity clubs, study groups, neighbourhood clubs and village or community meeting points.
Occupational therapy is mainly aimed at people who need rehabilitation. In such cases, it is entirely funded by the State. However, people with dementia are not usually considered eligible which means that they would have to pay for it themselves.
Assistive devices and home adaptations
The provision of assistive devices is mainly the responsibility of municipal health centres. Older people can borrow the assistive devices they need, such as walkers, from their health centres free of charge to help them in the home or in other situations where they need to be more mobile. The rehabilitation units of the hospital districts provide more expensive devices, such as electric wheelchairs and special beds. Support is given to older people in the form of home improvements and the provision of service housing. Home improvements usually consist of modifications to toilets and bathrooms, the removal of door frames, the widening of doorways and the installation of various kinds of support. Help with renovation work is provided in the context of legislation on services for people with disabilities and through government loans for basic renovations and repairs, and grants. Severely disabled people are reimbursed by the municipality for the cost of home conversions and for assistive devices and equipment installed in the home.
Home adaptation costs are covered if the alterations are essential to the client in order to be able to manage independently and if they are linked to overcoming the impediments of disability or sickness. Conversion work usually involves alterations to kitchens and bathrooms, widening doors, removing door frames and constructing ramps. Compensation is also provided for planning home conversions and for the removal of obstacles from the immediate surroundings of a client's home.
Home help is available but it does not always take into consideration the special needs of people with dementia. The range of services provided is rather restricted at the moment and inflexible. In fact, many municipalities no longer provide assistance with housework (e.g. cleaning, dusting and tidying). When available, it is partly funded by the State and partly by service users. However, there are private companies which provide assistance with housework and there are tax refunds for the purchase of private assistance with housework. For this reason, people are increasingly making use of these services.
Help with the preparation of meals can be provided by home help workers. They can prepare meals for more than one day when they visit their clients. Meals can also be delivered to people’s homes or provided at sheltered homes and day care centres. These services are partly funded by the State and partly by service users. It is also possible to purchase this kind of service privately.
Assistance with shopping is available and partly funded by the State. This service is fairly restricted but many shops and markets have an Internet ordering and delivery service.
Transport services are available for older people who have trouble getting around and who cannot use public transport. Transport is organised mainly by taxi, but special service transport lines with mini buses (which often include an assistant) and other forms of group transport are increasingly being used especially in big cities. Clients are charged the same fare as for public transport. As a general rule, transport services should be available, but people with dementia have difficulties obtaining this kind of service. For people in day care, transportation is arranged by group taxis and some day-care centres have their own transportation service. The State partly contributes towards the cost of this service.
It is possible to purchase assistance with laundry from private service providers. The State may contribute towards the cost of this service if provided as part of home care. Service users would also have to contribute towards the cost of the service.
Psychosocial support and training for people with dementia and carers
In some communities, local associations provide information about the various kinds of services available. They may be partly funded by the State.
Counselling for people with dementia and carers
Counselling services for people with dementia exist. According to a study into the availability and quality of services for people with dementia (Tervonen 2005), 40 % of municipalities described the availability of counselling services as good. Many Alzheimer and dementia associations develop counselling services in memory centre projects. A large number of municipalities have set up memory centres as part of primary health care centres or memory nurses work in health centres. Such counselling services are completely funded by the State. A person with dementia and/or a carer could, for example, have a meeting with a memory nurse at a health centre free of charge. Alzheimer and dementia associations also run support groups and provide individual counselling for people with dementia and carers.
Holidays for people with dementia and carers
Holidays for people with dementia are available but this service is insufficient. There are in fact only a few possibilities which are offered by Finnish slot machine associations.
Carers who receive a caregivers allowance are entitled to two free days a month. This must be taken after a period of time when the care that they were providing was very demanding. During this statutory free time, the municipality is responsible for caring for the elderly person and for partly financing this care. The carer must also contribute towards the cost of the stand-in carer. Private service providers also offer substitute carers.
Training for carers
Training is available for carers but this is mainly the responsibility of Alzheimer and dementia associations and other associations. The State does not provide any funds for the training of carers.
Work/tax related support for people with dementia
There are no measures to specifically protect the rights of people diagnosed with dementia who are still in paid employment.
People with dementia are entitled to tax refunds/benefits on the basis of their personal incapacity. This is covered by the Income Tax Act and the Income Tax Decree which came into force on 6 May 1993. The decree contains details of tax deductions on the basis of invalidity e.g. handicap caused by disease. In the act, there is a definition for the reduction of tax solvency caused by high medical expenses.
It is also possible to have a tax deduction for employing somebody to do the housework e.g. cleaning, shopping or other basic activities of daily living. This is covered by the Income Tax Act 1535/30.12.1992.
In some areas, there have been pilot projects to give direct payments to people with dementia in order to enable them to pay for services themselves.
The Act and Decree on Services and Support for Disabled People (Laki vammaisuuden perusteella järjestettävistä palveluista ja tukitoimista (380/1987) and Asetus vammaisuuden perusteella järjestettävistä palveluista ja tukitoimista (759/1987), which came into force on 1.1.1988, define certain kinds of services, such as transportation and home modifications. They also define a disabled person’s right to counselling and adaptation training.
There are no reductions on TV licences, radio licenses and or public transport for people with dementia. However, everyone over 65 years old is entitled to reduced prices on public transport.
Work/tax related support for carers and carer allowances
Time off work and flexible working
Carers are not entitled to paid time off work to care for someone with dementia. They may, however, be able to justify an occasional absence (without pay) for unavoidable family reasons.
Under the Working Hours Act, an employer and employee can come to an agreement over flexible working hours within set limits, setting the start and end of the working day. With flexible working hours, the daily working hours can be shortened or lengthened by not more than 3 hours.
Benefits and allowances
The Family Carers Act (1.1.2006) aims to promote informal care by providing sufficient social and health care services, and continuity in care and by supporting informal carers in their work. This Act defines the allowance and services that are granted to family carers looking after an older person, for example.
Relatives (e.g. spouses, partners or children) looking after an older person are entitled to an allowance for this from the municipality. The municipality may also arrange various social and health care services to back up this care. A care agreement is drawn up by the municipality and the person providing care which includes a plan for the provision of care and services.
In 2006, the minimum caregivers’ allowance was EUR 300 a month. There is no upper limit on this allowance which is taxable. In order to benefit from the caregivers allowance, carers must apply to the municipality. The allowance is not always granted as it depends on the financial resources of each municipality.
Carers are not entitled to tax benefits for the care they provide. However, carers who have made an agreement with the municipality are entitled to employment pension accrual, provided that they are not already on a pension. The person who leaves his/her job does not lose her pension because of being at home as a caregiver. The municipality also covers the caregiver's accident insurance.
Unless otherwise stated, information provided by Sirpa Granö of the Alzheimer’s Society of Finland in June 2007.
- Tervonen (2005), Dementiabarometri 2005. Alzheimer-keskusliiton julkaisusarja 1/2005
- Website of Ministry of Social Affairs and Health: www.stm.fi
- Website of Alzheimer Society of Finland (in Finnish): www.alzheimer.fi
- Website of the Association of Caregiving Relatives and Friends (also contains some information in English): www.omaishoitajat.com
Last Updated: mercredi 15 juillet 2009