Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Norway
Norway has been a constitutional state since 1842 and a sovereign state since 1905 when it dissolved its union with Sweden. Its health care system is based on equal access to all citizens irrespective of their social status, income and location. An important step in achieving this was the introduction of the National Insurance Scheme in 1967 (Johnsen, 2006).
The organisation of social support for people with dementia and carers
The Ministry of Health and Care Services and the Ministry of Labour and Social Inclusion are the governmental offices responsible for social support for people with dementia and carers. There is some overlap between the social/welfare and healthcare systems. In 2006, the government issued Report nr 25 (2005-2015) to the Storting – Care plan 2015. Dementia was one of the elements in focus in this strategy and the Ministry of Health and Care Services will introduce the plan in October 2007.
The private sector and some NGOs sell services to the State. In addition, unpaid volunteers also provide services and assistance. Interaction between the State and the voluntary sector is under consideration at the moment as the State wishes to increase this interaction.
The Norwegian Alzheimer Association has for many years received financial support for its dementia help-line. This year, it also received NOK 1 million as a consequence of Report nr 25. Local authorities often co-operate with the local dementia associations in organising support groups or training for carers.
The overall funding of social support for people with dementia and carers
Services are financed through general taxation but in some cases, service users have to also pay a fee. The State provides block grants to fund services that are provided by the municipalities. Sometimes, these grants are “earmarked” for certain groups and purposes, such as to provide services for the elderly or to enable people with mental disabilities to carry on living in their own homes (Helsetilsynet, 2006). Municipalities have the right to levy taxes on the population to help finance their activities (Johnsen, 2006).
The legal framework surrounding the provision of social support
The following laws are relevant to the provision of social support to people with dementia and their carers.
- Lov av 19.11.82, nr 66 om helsetjenesten i kommunene (Act on Health Service in Municipalities). This Act regulates the municipal health services. The purpose of the Act is: to promote health and prevent illness and injury; to diagnose and treat illness and injury; to provide medical habilitation and rehabilitation; to provide care; to give medical help in case of accidents or other acute situations. Everyone is entitled to necessary health care within the municipality in which he or she lives in or where he or she is temporarily staying.
- Sosialtjenesteloven av 13.12.91 (Social Services Act). The purpose of this Act is: 1) to promote economic and social security, improve the standard of living for people in financial difficulties, contribute to increased equality and prevent social problems; 2) to contribute to each individual being able to live and reside independently and to have an active and meaningful life together with other people.
- Pasientrettighetsloven av 02.07.99 (Act on the Rights of Patients). The purpose of this Act is to make sure that all people have equal access to health services of good quality. A new chapter in this Act, chapter 4 A. Health services to patients without capacity to consent who resist health services will come into force on 01.01.2008. The purpose of this new chapter is to be able to give necessary healthcare in order to prevent damage and limit the use of restraint. Providing healthcare to people who resist has to be done with respect for the physical and mental integrity of the individual and, as far as possible, in agreement with the patient’s self-determination.
Reforms are underway. For example, there is the Dementia Care Plan 2015 mentioned above which will come into force later in the year and there are also planned changes to the Law on Patients’ Rights.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Services are not adequate in the whole country. They vary from one municipality to the next depending on local priorities. The State does not direct the local municipalities one way or the other. It may make suggestions but it is the local authorities that decide.
There is a huge gap between the specific needs of people with dementia and the availability of services.
People living in rural areas
People living in the countryside have fewer possibilities than those living in densely populated areas. The size of a Norwegian municipality varies from 1,500 to 500,000 inhabitants and there are big differences in the ability of the each municipality to organise satisfactory care for people with dementia.
People with different types of dementia
There is little support to people with different types of dementia. The same kind of support is usually offered to everyone with a diagnosis of dementia. There are only a few exceptions.
People from ethnic minorities
There is only support for one ethnic minority, the Sami people. This support was initiated by the Norwegian Alzheimer association. After a project period of three years there are now local dementia associations and a dementia help-line for the Sami population. There is also a brochure and a DVD in the Sami language.
Younger people with dementia
Some larger municipalities have day-care facilities which are particularly suited to the needs of younger people with dementia but most younger people with dementia do not receive social support that is specifically designed for them.
Services and support for people with dementia and their carers
Types of care
Day care in day care centres exists but only 4% of people with dementia living at home benefit from it. It is partly funded by the State.
Respite care at home is completely funded by the State but it is not available all over the country. Some NGOs and volunteers also provide this service. Short-term and long-term residential respite care is also available and funded by the State but it is insufficient (particularly long-term residential respite care for people with dementia).
Long-term residential care
75% of the monthly pension of the service user is taken to cover the costs of long-term residential care. In addition, 85% of additional means (e.g. interest from shares or bank savings) goes to the residential care institution. This cannot, however, exceed the real cost of such care. Means testing is applied but personal property is not included in the calculation of available means.
Palliative care at home is completely funded by the State but is insufficient. People with dementia are, in principle, entitled to this service on the same basis as other patients but in practice most of them have to move to nursing homes in order to get adequate care. Some NGOs also provide this service. There are no palliative care centres/hospices just for people with dementia. Those that exist are for people with cancer and are completely funded by the State.
Monitoring in the home via alarm systems
Tele-alarm systems exist but are insufficient. The local authorities evaluate whether a person needs a tele-alarm system or not. Economic issues may influence this evaluation. It is also possible for service users to finance the tele-alarm system completely themselves.
Personal assistance and home help
The following services are provided free of charge if the local authorities agree that the person needs them. Unfortunately, this decision is often influenced by the financial situation and overall priorities of the municipalities.
- Assistance with personal hygiene
- Assistance/supervision taking medication
- Assistance with eating and drinking
- Assistance with mobility (lifting, moving and walking)
- Assistance with incontinence
- Assistance with skin care
- Assistive devices
Assistance with personal hygiene is available throughout the whole country but the amount of assistance each individual receives is often insufficient. There are great variations depending on the local authorities. Many private companies offer such services which means that people with a good financial situation also have the option of paying privately for assistance with personal hygiene.
Assistance/supervision taking medication is insufficient in towns but in rural areas/the countryside, it is considered sufficient. People in isolated regions taking medication may receive a visit from a nurse twice a day and a telephone call in the middle of the day to remind them to take their medicine.
Assistance with eating and drinking is supposed to be provided but in many places, meals are just delivered to the door and no assistance is provided. Volunteers sometimes provide assistance with eating and drinking.
Assistance with mobility (lifting, moving and walking) is insufficient. Often, it does not correspond to people’s needs. For example, many people are not helped out of bed at times that suit them, they may be placed in a chair for the whole day and put to bed far too early in the day. Lots of people do not get taken out at all.
Incontinence pads are available on the same basis as medicines. People must obtain a prescription from a doctor which they then take to a chemist’s. They have to contribute towards the cost of the pads but once they have reached the limit of NOK 1,600 that year (for medicines, visits to the doctor and incontinence pads), the pads are free of charge for the rest of the year. Concerning assistance with incontinence, in many cases the pads are often not changed sufficiently often.
Services providing assistance with skin care are insufficient and there is a shortage of ergotherapy in most areas of the country.
There is some confusion surrounding the provision of assistive devices. In many cases neither the municipalities, which should be providing these devices, nor the patients know which devices they are entitled to. Dementia associations help by giving information to carers so that they can request the appropriate devices from the relevant authorities.
Finally, companionship/social activities and home transformations are available but only partly financed by the State. Both are insufficient. NGOs, volunteers and the Church all offer some degree of social support in the form of home visits and gatherings at centres for the elderly or at churches. Nevertheless, there are still many lonely people with dementia.
The following services are all available and partly funded by the State:
- Assistance with housework
- Help with the preparation of meals (including meals-on-wheels)
- Assistance with shopping
- Assistance with transport
- Assistance with laundry
The last three are considered insufficient. In some places, NGOs offer a meals-on-wheels service. Many municipalities have stopped providing assistance with shopping and advise people to arrange for shops to deliver their groceries instead. Nevertheless, in many places, volunteers provide assistance with shopping. Transportation services vary from one municipality to the next but some NGOs have a transport service to bring people with dementia to their organised activities.
Psychosocial support and training for people with dementia and carers
The municipalities should inform people about all the services that are available but often they do not give adequate information. Specialists responsible for diagnoses also inform people about available services. Dementia associations provide information via the dementia help-line and meetings which are open to everyone.
Some dementia associations have support groups for people with dementia and also for carers which are partly funded by the State. Service users do not pay anything for this service. Another NGO, the Church City Mission, also provides counselling for carers. Nevertheless, counselling services for people with dementia and carers are considered insufficient.
Holidays for people with dementia are sometimes available but this is insufficient and not funded by the State at all. However, people with dementia may be entitled to a two-week stay in a nursing home (completely funded by the State) so that the carer can have a holiday. In some cases, this is regularly repeated in that the person with dementia spends two weeks at home and two weeks in an institution. Carers are entitled to these breaks/holidays under the Social Services Act, but in practice local authorities decide whether or not carers get a break.
Training for carers is available but insufficient. Local dementia associations often organise training courses and implement them together with local authorities. Such courses are partly funded by the State and partly by service users. At the moment, this is insufficient. However, the government recently started a three-year project to increase training for carers, which is being run in collaboration with the Norwegian Alzheimer Association.
Work/tax related support for people with dementia
People with dementia, like people with other illnesses, cannot be sacked simply on the grounds that they are ill. However, if they cannot manage to do their job properly and the employer cannot find other more suitable tasks, they can be made redundant on the grounds of illness. This is covered by the Health Insurance and Pension Act (unofficial translation) (Lov om folketrygd of 28.02.1997).
People with dementia, who can prove that they have extra expenses because of their illness, are entitled to a small monthly payment (grunnstønad). People with dementia who employ someone to provide private help at home are entitled to another payment known as the hjelpestønad. These payments are available in accordance with the provisions of the Health Insurance and Pension Act. This act also covers home adaptations which are mostly financed by the State or by municipalities.
People with dementia in receipt of a disability pension are entitled to half price fares on public transport services. If they have difficulty using public transport, they may be entitled to a certain number of taxi rides per year at a reduced price. This is dependent on local authorities.
Work/tax related support for carers and carer allowances
Carers are not entitled to paid or unpaid time off work or flexible working hours in order to help them organise care giving. They are not entitled to tax refunds/incentives for the care they provide or State subsidised pension contributions. However, under the Social Services Act, carers may receive direct payments from the municipalities for caring. The number of hours they are paid for is decided by the local authorities and does not usually cover the actual hours spent caring.
Unless otherwise stated, information provided by Maija Juva (Norwegian Alzheimer Society) between May and September 2007.
- Johnsen, J. R. (2006), Health Systems in Transition, http://www.euro.who.int/Document/E88821.pdf
- Norwegian Board of Health Supervision (2006), Norwegian Health and Social Services, http://www.helsetilsynet.no
- Useful links:
- http://www.shdir.no (also English section)
Last Updated: mercredi 15 juillet 2009