Legislation relating to the provision of home care services
The Ministry of Health and Social Affairs in Sweden is responsible for general planning, guidance and supervision aimed at older people. The overall policy is that people have the possibility to live independently and safely in their own homes as long as they wish with support and home-care if needed. The targets are established by the Swedish Government and Parliament.
The care of older people, which includes the care of people with dementia, is regulated by three laws. Each law regulates in a different way what the public sector can expect in relation to the individual and what kind of rights the individual has. The laws are as follows:
- the Law of Health and Medical Services (HSL) 1982:763;
- the New Social Service Legislation (SOL) SFS 2002:453 (which came into force on 1 January 2002); and
- the Law of Support and Service to Certain Persons with Handicap (LSS) 1994 which is a law of rights and carefully specifies the obligations of municipalities and county councils as well as individual rights. Only younger people, under 65 years, with dementia have a right to receive help from a personal assistant instead of home care.
The HSL includes an obligation of health service authorities to provide home care services if the needs cannot be met in any other way. Much of the care is carried out by families (informal caregivers). However, there is no statutory obligation for children to care for or financially support their parents. In the Social Service Legislation there are rules which state that the municipalities shall give those who need it, i.e. elderly people and those with disabilities, the kind of support they need which among other things includes home care services. There is no specific reference made to people with dementia. Moreover, there is no national, legally binding definition of dependency in Sweden. People with dementia are covered by the categories “elderly” and “people with disability”. Home care includes medical, rehabilitation and social work which a person may need at home.
According to the SOL, municipalities should support relatives. An important means of support for people with dementia, to enable them to live at home, is day-care which can provide stimulation and ensure the safety of people with dementia, as well as providing relief for the relatives. However, day-care is not compulsory.
The municipalities are independently responsible for providing social and home care. Social legislation provides a legal framework which gives the municipalities freedom to develop the law according to local conditions and political decisions. They can therefore interpret their obligations differently. Many municipalities have developed their own informal guidelines on service provision with the result that in some areas, for example, elderly people who only need help with cleaning are no longer eligible for home-help. Some have introduced means testing for some services. (Thorslund et al., 2001)
Organisation and financing of home care services
In Sweden, the welfare of the elderly is divided between three levels of government:
- at national level: the Parliament/Government (responsible for establishing policy aims and directives by means of legislation and economic steering measures)
- at regional level: the county councils (responsible for the provision of medical and health care)
- at local level: the municipalities (responsible for meeting the social services and housing needs of the elderly) (Regeringskansliet, 2002)
In 1992, the Swedish government implemented the Community Care Reform (known as the Ädelreform) which involved the decentralisation of responsibility and resources for the care of the elderly from regional to local governments. (Regeringskansliet, 2002)
Half of the municipalities, 144 of 290, in the country have now taken over responsibility for health and medical care in ordinary living. In the other municipalities, the county councils are responsible.
The municipalities are responsible for organising service and home care for their inhabitants. They can provide services themselves or they can buy from private providers.
The local authorities are obliged to have insight into and keep control of both their own and private type of care. Support from voluntary organisations is limited. The municipalities are responsible for providing assistive devices for the elderly.
Since an increasing number of people with dementia remain at home in their usual environment for an increasingly long period of time during the course of the disease, specially developed care and support measures are needed that target them and their close relatives. In a number of municipalities, there are clear plans and strategies for how the municipalities can provide individual adapted care for people with dementia. In many other areas, both knowledge regarding the needs of people with dementia and their relatives and the activities and resources offered to meet these needs are insufficient.
The fees charged for home help are determined by the amount of help needed and a person’s income. Nevertheless, people receiving home care only pay a fraction of the actual cost. Also, since 1 July 2002, there has been a maximum fee for elderly patients resident in the municipalities. (Regeringskansliet, 2002)
The provision of services is based on an assessment of the person’s housing, services and care needs. This is usually carried out by a municipal care manager, or as is often the case for elderly people, by an interdisciplinary care planning team (Johansson, 2004).
Kinds of home care services available
Entitlement to aid, insofar as this concerns the care of elderly people, includes amongst other things help in the home with services and personal care if the needs cannot be satisfied in other ways. The type of home care provided can be divided into different services which involve practical help with running of the home, cleaning and laundry, help with purchases and other important errands, as well as cooking and help eating. Help with care means personal help with tasks which are needed in order to satisfy the person’s physical, mental and social needs. It may be help with eating or drinking, getting dressed and moving, help with personal hygiene, activities to break isolation, measures to ensure that the person feels safe and secure at home, or a safety-alarm (which only people with mild dementia can use). It is possible to get home care and medical care every day of the week, in the evening and at night. In 1997, 28 percent of those receiving home help received it in the evenings and at night.
In addition to home help, other municipal services for the elderly include transportation services, foot care, meals on wheels, security alarms, housing adaptations and disability support, etc. (Regeringskansliet, 2002).
Consultation with people with dementia and carers
§29 of the Law of Health and Medical Services HSL and chapter 3, §5 of the New Social Legislation SoL, states that home care services should be organised in consultation with the people and relatives who are asking for a special kind of assistance. A decision made in accordance with the social law can be appealed if the decision is wholly or partially against the person’s wishes.
In 2002, the Government decided to set up a working group to compile the knowledge available about the situation of people with dementia and their relatives. Its objective was to try to provide a comprehensive overview of the current situation.
The group has presented a national view of how dementia care has evolved in Sweden during recent years and the areas that it is important to prioritise and develop in the next few years. This report entitled “På väg mot en god demensvård” (On the way towards good dementia care) was published by the Ministry of Health and Social Affairs in 2003. This report has led to a number of different projects in the Municipalities and County Councils.
There are no national facts about users’ satisfaction but many local studies have been done which show that people are generally satisfied with home care. General satisfaction is however a blunt measure for services and care. The failings become much clearer with specific questions. Another problem is that many people cannot answer the questions because of their disease. Often the questionnaire or interview is answered by the relative even though users and relatives’ opinions about care often differ. In 2003, the Swedish Dementia Association published an extensive study of the situation of caregivers.
In studies where users have been asked how important a certain fact is, the answer is very often that having the same member of staff is important for their safety. A common experience is that staff is in a hurry. There is no time to talk and be together socially. Questions which are given the highest evaluation are those concerning treatment and accessibility. It is also important to be aware of the needs of people with dementia and their relatives and to understand the experience and needs of people with dementia in particular. In some communities, specially organised home-care for people with dementia has been started.
Support for people with dementia in their own homes varies greatly from one community to the next. In the inquiry into dementia in 2002, 9% of the communities said that they had specially arranged home care for people with dementia. In certain cases, there is specific planning and a strategy on how the communities should treat and give individually designed care to people with dementia. Elsewhere, knowledge about people with dementia and their relatives is insufficient.
However, a great deal of education/training for staff working with people with dementia has been organised. Awareness about the importance for staff providing care and support to persons with dementia to have the requisite knowledge has increased. They have to know how to behave towards people with dementia, how to stimulate them, what attitude to have when handling challenging behaviour and how to make the most of a person’s remaining capacity.
- Information provided by Inge Ploby
- Johansson, L. (2004), National Background Report for Sweden, EUROFAMCARE. http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/nabare_sweden_rc1_a4.pdf
- Regieringskansliet/Socialdepartementet (2002), Answer to questionnaire on health and long-term care of the Elderly – Sweden, European Commission, ( http://europa.eu.int/comm/employment_social/social_protection/docs/sv_healthreply_en.pdf )
- Thorslund, M. et al. (2001), Care for elderly people in Sweden. In Aging: Weisstub, D.N. et al.) (Eds.), Caring for our Elders, Kluwer Academic Publishers
Last Updated: mercredi 15 juillet 2009