Background information

Where people with dementia receive care and support

The following table provides estimates of the number of people with dementia living at home, in various types of residential care and in hospitals or psychiatric institutions.

People with dementia do not generally live in general/non-specialised residential homes. However, about 80% (i.e. 35,000 people) of residents in general/non-specialised nursing homes have dementia.

The ratio of staff to residents in general/non-specialised nursing homes and in specialised nursing homes for people with dementia not known.

The organisation of care and support for people with dementia

The overall organisation of care and support

Norway’s healthcare 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 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 introduced the plan in October 2007.

The main service provider is the public healthcare service but the private sector and some NGOs sell services to the State as well. 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 care of people with dementia is organised by the municipalities of which there are 430.

Services are financed through general taxation but in some cases, service users have to also pay a small 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. Municipalities have the right to levy taxes on the population to help finance their activities (Johnsen, 2006).

Services are not adequate in the whole country. They tend to vary from one municipality to the next depending on local priorities.

The size of a Norwegian municipality varies from 1,500 to 500,000 inhabitants and there are big differences in the ability of each municipality to organise satisfactory care for people with 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.

For the time being, there is only support for one ethnic minority, the Sami people. This support was initiated by the Norwegian Alzheimer association. There are brochures for Sami people living with dementia and Sami carers in the three different Sami languages and structured education available for Sami carers. The Directorate of Health initiated a wide collaboration of different organisations to better information and services for other ethnic minorities. 

The government is currently focusing on increasing day care services in all municipalities through earmarked grants.

In Norway, there are estimated 3,000 people with dementia under 65. 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 don’t receive social support that is specifically designed for them.

How specific aspects of care and support are addressed

The following aspects of care and support are addressed in the National Dementia Strategy (Norwegian Ministry of Health and Care Services, 2008) and in theAct of 2 July 1999, No. 63 relating to Patients’ Rights (see references section for link to these documents).

• Continuity of care and support,
• Needs assessments (e.g. ensuring that it is timely, fair and appropriate),
• Research into care and support,
• Communication skills with patients,
• Promoting well-being and autonomy,
• Respecting individuality and cultural diversity.

Training

Which social and healthcare professionals provide care and support

The following social and healthcare professionals are involved in the provision of care and support to people with dementia in residential care or living at home.

* Only if they are linked to the provision and organisation of care and support (i.e. not with regard to their role to provide medical treatment).

The type of training that social and healthcare professionals receive

Within specialised nursing home units for people with dementia, the following levels of education/training have been recorded (Eek & Kirkevold 2011):

3 years of college healthcare (50%)

3 years of college with specialised training in dementia/ geriatrics

21% of nurses have a Bachelor’s degree,

7% of nurses have a Bachelor’s degree and specialised training in dementia/ geriatrics,

9% have no relevant education

How the training of social and healthcare professionals is addressed

The training of social and healthcare professionals is covered in national policies. The National Dementia Strategy states that various training programmes will be developed for internal use by municipal health and care, including training packages in basic dementia knowledge. Nursing homes and assisted living facilities can also receive grants for training programmes (The ABC of Dementia Care).

Support for informal carers

Respite

The development of respite services was identified as a long-term strategy and outcome target for 2015 in the National Dementia Plan in which it is stated, “Those who assume strenuous care tasks shall be offered extensive respite services and professional support. Well-set-up programmes and respite services can also give family caregivers a break from their daily routine” (Norwegian Ministry of Health and Care Services, 2008, p. 21).

Training

See section 17.3.3. and 17.3.7.

Consultation/involvement in care decisions

Section 4-6 of the Patients’ Rights Act of 1999 covers the situation whereby an adult with legal capacity is not competent to consent. In such cases, his/her next of kin may consent to highly invasive treatment in terms of its extent or duration. The next of kin may also be consulted in order to determine what patient would have wanted. If a person has been declared legally incapacitated, his/her consent should be obtained if at all possible but if not, it is the guardian who would be asked to provide consent. In the context of this law, the next of kin is chosen by the patient and if s/he has not done so, an order of priority is applied starting with the spouse, followed by people with other relationships, including non-married partners.

Counselling/support

In the National Dementia Plan it was stated that during the first four years of the plan period the Government would ensure the spread of schools for family caregivers and support groups through a three-year development programme. The aim of the schools was described as being to provide knowledge about dementia disorders and offer support and guidance to families. The programme was to consist of preparing training materials, training course leaders and implementing measures. Such materials were to be used by municipal health and social services in giving professional guidance to users and their family members.

Case management (insofar as this relates to care)

In section 2-5 of the Patients’ Rights Act of 1999, it is stated that any patient who requires long-term, coordinated health services is entitled to have an individual plan drawn up.  Section 3-1 further states that the patient is entitled to participate in the implementation of his/her healthcare and that if the patient is not competent to give consent, his/her next of kin is entitled to participate with him/her. In addition, the patient’s possible wish for another person to be present when healthcare is provided should be accommodated as far as possible. 

National Alzheimer Association

The Norwegian Alzheimer Association (Nasjonalforeningen for folkehelsen) provides the following services and support

References

Eek, A. & Kirkevold, Ø. (2011).Nasjonal kartlegging av tilbudet til personer med demens 2010-2011). Forlaget Aldring og Helse

Engedal, K. and Haugen, P.K. (2005).Lærebok Demens Fakta og utfordringer, Forlaget Aldring og helse

Johnsen, J. R. (2006). Health Systems in Transition. Accessible at: http://www.euro.who.int/Document/E88821.pdf

Norwegian Ministry of Health and Care Services (2008). Dementia Plan 2015.  Norwegian Ministry of Health and Care Services. Accessible at: http://www.regjeringen.no/upload/HOD/Hoeringer_KTA/Dokumenter/Subplan%20of%20Care%20Plan%202015%20-%20Dementia%20Plan%202015.pdf#search=Dementia Plan

Patients’ Rights Act. English translation accessible at:
 http://www.ub.uio.no/ujur/ulovdata/lov-19990702-063-eng.pdf

Acknowledgements

May-Hilde Garden, Expert Consultant in Dementia, Nasjonalforeningen for folkehelsen
 Anne Kjersti Toft, Political Advisor, Nasjonalforeningen for folkehelsen