Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Sweden
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.
Half of the municipalities, 144 of 290, in the country have now taken over responsibility for health and medical care in everyday life. In the other municipalities, the county councils are responsible.
The organisation of social support for people with dementia and carers
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 designed to ensure 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. These targets are established by the Swedish Government and Parliament.
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 guiding 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).
The municipalities are responsible for organising services and home care for their inhabitants. They can provide services themselves or they can purchase them from private providers but they must keep track of the care that they are providing and of the care provided by private companies. Support from voluntary organisations is limited.
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.
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.
The overall funding of social support for people with dementia and carers
Social support for people with dementia and carers is funded through general taxation and individual service fees. The State provides funding to Alzheimer associations on the basis of the number of local associations and the number of members. Support is also given for telephone advisory services etc.
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 people resident in the municipalities.
The legal framework surrounding the provision of social support
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 2001:453 (which came into force on 1 January 2002);
- 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.
§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.
There are no law reforms currently underway.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
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.
In 2002, the Government decided to set up a working group to compile available knowledge 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 in 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 carried out 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 when specific questions are asked. Another problem is that many people cannot answer the questions because of their disease. Often the questionnaire or interview is answered by a relative even though users’ and relatives' opinions about care often differ. In 2003, the Swedish Dementia Association (Demensförbundet) published an extensive study on the situation of caregivers.
In studies where users have been asked how important a certain fact is, the answer has very often been that having the same member of staff is important for their safety. A common experience is that staff are 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 of the importance for staff who provide 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.
People from ethnic minorities
Some support is available for people with dementia and carers from ethnic minorities but this is insufficient. When available, it is partly funded by the State and partly by service users.
Services and support for people with dementia and their carers
Types of care
According to the The New Social Service Legislation (SOL), municipalities should support people caring for dependent 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. Day care centres which exist are partly funded by the State and partly by service users. They are considered insufficient.
There are no services providing respite care at home. Short-term and long-term residential respite care exists but this is insufficient. Both types of respite care are partly funded by the State and partly by service users.
Palliative care at home and in palliative care centres is available and partly funded by the State. The home service is considered insufficient but palliative care in centres is considered sufficient.
Monitoring in the home via alarm systems
Tele-alarm systems are available and are partly funded by the State. However, this service is considered insufficient.
Personal assistance and home help
The following services are available. They are partly funded by the State and partly by service users:
- Assistance with personal hygiene
- Supervision/assistance taking medication
- Assistance eating and drinking (not with the preparation of food)
- Assistance with mobility e.g. lifting, moving and walking
- Assistance with skin care
- Companionship/social activities
- Occupational therapy/ergotherapy
- Assistive devices (provided by the municipalities)
- Home adaptations/transformations
The first two services are almost sufficient. The rest are considered insufficient.
Assistance dealing with incontinence is also available and is completed funded by the State but it is nevertheless considered insufficient.
A range of services are available to help people in the home. They include:
- Assistance with housework
- Delivery of readymade meals
- Assistance with shopping
- Transportation service
- Assistance with laundry
The above-mentioned services are all partly funded by the State and partly by service users. On the whole, they are not considered sufficient. Assistance with shopping is considered insufficient in some areas.
Psychosocial support and training for people with dementia and carers
The availability of general information services (covering access to services) varies throughout the country but those that do exist are completely funded by the State.
Counselling services for people with dementia are partly funded by the State and partly by service users. Carers must pay the complete cost of counselling services themselves. In both cases, the services are considered insufficient.
There are no specific provisions for people with dementia and/or carers to have holidays. Training courses are available for carers but the State does contribute at all towards the costs so carers have to pay the full cost themselves. This is not considered sufficient.
Work/tax related support for people with dementia
There are no protective measures for people diagnosed with dementia who are still in paid employment. They are not entitled to tax refunds on the basis of personal incapacity or for employing someone to provide home care services, they do not receive direct payments to pay for care and they are not entitled to tax refunds, grants or incentives for necessary home adaptations.
People with dementia are, however, entitled to reductions on public transport fares. This is covered by the Law of 1997:736 (Lag om färdtjänst).
Work/tax related support for carers and carer allowances
Carers are not entitled to paid or unpaid time off work or flexible hours on the grounds of their caregiving duties. They do not receive free or subsidised pension contributions for the care that they provide or any kind of payment from the State or tax benefits/incentives.
Unless otherwise stated, information provided by Lennart Garney (Demensförbundet) in June 2007
Last Updated: mercredi 15 juillet 2009