Background information about dementia and home care services
In Finland, there are an estimated 300,000 informal caregivers. Only 20,000 of these are official informal caregivers. This number refers to informal care giving in general. The number of informal carers for people with dementia is not specified. Finland has separate legislation on informal care (informal care agreement, financial compensation, required services and respite periods for the family caregiver). In order to provide informal care, the carer and the municipality make an agreement on the provision of informal care. The problem is, however, that the municipalities don’t necessarily have enough financial resources to support informal care giving and in different municipalities, inhabitants are not treated on an equal basis when it comes to sorting out the allowance for this kind of support. This means that at present only a proportion of family members providing informal care are receiving an informal care allowance.
This question of informal caregiving is currently under discussion. The detection of informal care, as well as proposals for developing it, have been made to the Government. The Alzheimer Society of Finland (ASF) has made a statement on this developmental work. The ASF pointed out, for example, that financial support should not be the only means of support for informal care giving, but in addition to that services are needed. From the ASF’s point of view, financial compensation for the family carer should be combined with other services. Financial compensation makes it possible for many carers to provide informal care.
Legislation relating to the provision of home care services
There is national legislation concerning provisions for home care services. In the Constitution of Finland (731/1999) basic rights and liberties of inhabitants are defined. In Chapter 2, §6, the principle of equality is defined; §7 defines the right to life, personal liberty and integrity and in §19, the right to social security is defined. With regard to people with dementia, this means, that no one shall be treated differently from other people on the grounds of disability or age. They have a right to human dignity and those who cannot obtain the necessary means for a dignified life have the right to receive indispensable subsistence and care. Everyone is guaranteed by an Act the right to basic subsistence in the event of illness and disability.
The Social Welfare Act (710/1982) defines social welfare: 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. §17 of this Act defines municipalities’ responsibilities in organising services (home-help services, support for informal care). In §20, home-help services are defined. In §21, it is stated that home-help services are provided on the grounds of impaired functional capacity, illness or to persons in need of assistance in coping with functions and activities.
In the Social Welfare Decree (607/1983), §9, the way that home-help services are organised is defined: 1) assistance, personal attendance and support provided at home by a trained home helper for house aid for an individual or a family and 2) auxiliary services (meals on wheels, maintenance of clothes, bathing, cleaning, transportation and services promoting social interaction).
In the Act on the Status and Rights of Social Welfare Clients (812/2000), it is stated that clients’ wishes and opinions must be taken into account in planning and providing social welfare. If a person cannot participate in planning because of their illness, family carers’ opinions should be used in order to determine clients’ will.
Organisation of home care services
The Ministry of Social Affairs and Health in Finland is responsible for general planning, guidance and supervision of services aimed at older people. In Finland, there are 444 municipalities, which are independently responsible for providing social and health care services. According to the Act on Planning and Government Grants for Social Welfare and Health Care (733/1992), municipalities receive financial support from the Government in order to organise these services.
Each municipality organises services independently, which means, for example, that they are responsible for organising home help, housing services, institutional care and support for informal care. The way that services are organised may vary (for example municipalities can provide services independently themselves, they can organise/provide services together with another municipality, or they can provide a voucher to service users so they can buy services from a private service provider).
During the past decade, increasing attention has been paid to the role of different bodies in organising and funding services. The overall policy still holds that the public sector (municipalities) is responsible for organising services. The role of the private sector (including non-governmental organisation/foundations, in which the municipalities often have their representatives) in providing services has also grown. The role of non-governmental organisations is particularly important in the field of housing services (sheltered homes).
In Finland, all inhabitants are legally obliged to have social insurance. This obligatory social insurance is intended to cover everyone for the financial impact resulting from old age, work disability, sickness, unemployment and death of dependents.
However, there is inequality in access to services. Concerning people with dementia, this inequality means that getting first-hand information and adaptation training, for example, depends heavily on which municipality the patient with dementia lives in. The role of service providers from the private sector has therefore become more important and expectations for the future of this sector are high. However, this places people with dementia on an unequal footing due to higher expenses. Private services don’t exist in all municipalities. The use of service vouchers is an option for people who need home services. Municipalities can offer these vouchers to their inhabitants in order to buy services from the private sector.
The Government’s Target and Action Plan for Social Affairs and Health for 2004-2007 and its recommendations specify the goals relating to social welfare and health care policy. In the plan, the Government sets down for the next four years the development targets and recommendations for social welfare and health care. In this plan, there are guidelines for care and services for elderly people. The main policy aim is to ensure that as many older people as possible are able to live independent lives in their own homes.
These targets and recommendations apply primarily to the municipalities. The plan also includes recommendations for measures through which the central government can support the municipalities in reaching their targets. 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 point of which is to ensure a good quality of life for older people, their self-determination and independence regardless of their functional capacity. There are relatively few municipalities, which have a special strategy concerning dementia care.
The Six State Provincial Office creates the conditions for the implementation of social and health care services in the province. It also steers and monitors the delivery of these services. The State Provincial Office networks with service providers and users and various organisations across administrative boundaries. In collaboration with municipalities, it supports the development of social and health care services according to national objectives, as well as the implementation of preventive social and health care policy. The State Provincial Office helps ensure equal access to welfare services for every citizen regardless of where they live. The tasks include for example: 1) steering and monitoring of municipal social and health services and preventive work 2) licences for providers of private social and health services and monitoring the practitioners.
Although there is national legislation in place and the Ministry of Social Affairs and Health gives recommendations regarding service provision, actual practices vary widely in the 444 municipalities in Finland because of their independent role. Although there are recommendations to the municipalities on providing care and services, actual practice with regard to testing and evaluation of functional capacity as well as the evaluation of the need for services and so on varies.
In Finland, the main service providers are municipalities (444). Then there are non-governmental organisations (for example The Central Union for the Welfare of the Aged, Finnish Red Cross etc.). In addition to this there are dozens of private service providers, who provide homecare and home services for elderly people.
Home care services provided for the elderly by Finnish local municipalities have been cut by a third over the last decade. It is also estimated that home services are in many cases aimed at people living in sheltered homes, which means that people living in their own homes are often deprived of much needed services. In addition to this, home care does not take sufficient account of the special needs of people with dementia.
Financing of home care services
It is estimated, that overall expenses in dementia care for moderate to severe dementia amount to almost EUR 1.7 million per year. This is based on institutional care. Secondary costs are excluded.
Municipalities are responsible for organising services for their inhabitants. Tax revenues finance service provision/organisation. The costs of the services provided by municipalities for their clients are determined by their income. Financial support is dependent on the municipality’s age structure and the size of its population. However economic constraints dictate the level of service provided. There are areas/municipalities, especially in eastern and northern Finland where local authorities are experiencing financial difficulties (because of migration, age structure in the municipality and tax revenue).
As mentioned earlier in this paper, municipalities can produce services themselves, or they can buy services from private service providers (which are private firms or Non-Governmental Organisations). Non-Governmental Organisations provide services like sheltered houses and home care. The proportion of costs met by service recipients themselves has increased. There have been discussions whether clients should pay more for these services.
According to a European Commission report (2002), a working group has studied the possibility of introducing long-term care insurance in Finland on a voluntary basis to finance the care of the elderly. This would supplement statutory municipal service provision and other public services.
Kinds of home care services available
Home help and home nursing care are the kinds of service, which are also aimed at people with dementia living at home. In Finland, home help and home nursing services in a municipality work together in close collaboration.
In some municipalities, home help services and home nursing have been co-operated for home care units. When organising home care (nursing and services), a written plan is drawn up for each client in which the aims, methods and all providers are defined. In some cases, it includes a plan for rehabilitation as well.
Home help services provide assistance when a person, owing to an illness or reduced capacity, needs help at home in order to cope with routine daily activities. Help is provided by home helpers and practical nurses. They monitor the clients’ state of health and provide guidance and advice. Services are also provided in the evening and at weekends. Municipal health centres employ separate personnel, who have trained as specialised nurses, registered nurses and practical nurses. The home nursing service includes giving care, taking samples and performing tests. Nowadays even more demanding nursing is provided at home, because many people want to live at home until the end of their lives. These services also involve supporting family members.
Home-help services cover the performance of or assistance with functions and activities related to housing, personal care and attendance or activities in normal daily life. Support services are intended to help older people to manage socially in everyday life. Services include the provision of meals, daytime activities, transportation and services, bathing, laundry and cleaning services. Municipalities determine the range and cost of each service. There is no special provision for these kinds of services for people with dementia. Therefore, they are usually a part of the services aimed at elderly people.
Consultation with people with dementia and carers
From the Finnish Alzheimer Society’s point of view 1) the number of services available is insufficient and 2) the content of these services does not take into account the needs of people with dementia. The Alzheimer Society of Finland has stressed the importance of specific quality factors with regard to these services:
- The services should be based on a thorough evaluation of the needs of the person with dementia and his/her family carer (life history, family situation, holistic way of evaluation and assessment of functional capacity)
- Rehabilitative way of supporting a person with dementia (recreational activities, plan for care and services)
- Emphasis on clients’ resources – supporting functional capacity
- Flexibility in providing services
- Confidence-building is essential
- The self-determination of a person with dementia should be respected.
- Co-ordination and building networks - continuity and developmental aspects should be taken into account when providing home care and support services.
Please also see the paragraph on the “Act on the Status and Rights of Social Welfare Clients (812/2000)” for information on the need to consult people with dementia and their carers about the provision of social welfare services.
- Information provided by Sirkkaliisa Heimonen (Alzheimer’s Society of Finland)
- European Commission (2002), Questionnaire on health and long term care for the elderly, European Commission: ( http://europa.eu.int/comm/employment_social/social_protection/docs/fi_healthreply_en.pdf )
- European Commission (2002), Finland, http://europa.eu.int/comm/employment_social/missoc/2002/03/finland_en.pdf#search='care%20insurance%20AND%20finland' (accessed on 31 May 2005)
- Ministry of Social Affairs and Health (1999), Social welfare legislation (Appendix 2): ( http://pre20031103.stm.fi/english/pao/publicat/welfare/welfare7.htm )
Last Updated: mercredi 15 juillet 2009