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Sweden

2012: National Dementia Strategies (diagnosis, treatment and research)

Background information about the National Dementia Strategy

Status and historical development of the National Dementia Strategy

The National Dementia Strategy of the Swedish National Board of Health and Welfare from 2010 is the first national guidelines for care in dementia within the field. The guidelines emphasise evidence-based and evaluated treatments and methods of care for people with dementia and for support for their next of kin. During the development of the guidelines the focus was on community care and primary healthcare. The guidelines concern both private and public care. A number of experts participated in this work. The scientific information and conclusions of the Swedish Council of Technology Assessment in Healthcare were important in this respect.

The purpose of the National Dementia Strategy for Sweden is that it should support decision makers in communities, county councils and regions in governing healthcare and social services through open and systematic priorities. One part of the guidelines is targeted mainly at decision makers and management boards within health and medical care, and intended to support leaders within all levels of the health and medical care and social care sectors. Other parts of the guidelines are directed mainly toward unit managers, nurses with medical responsibilities and other health and care personnel.

The National Board of Health and Welfare adjudges that the recommendations are central preconditions to enable these guidelines, in overall terms, to deliver the desired result. Recommendations may be resource-intensive and entail for example the need for investments in staff and competence.

Duration of the National Dementia Strategy

The National Board of Health and Welfare considers that Health and Medical Care and Social Services should follow up, at least once a year, medication treatment, cognition, functional capacity, general state of health, behavioural changes and support those inputs agreed upon.

Indicators for nursing care in special dementia living units were introduced in 2012. The guidelines will be revised when the results of new research become available. This is a continuous process.

The National Board of Health and Welfare considers that the recommendation reduces the costs of health and medical care and social services in the longer term.

How the National Dementia Strategy is funded

The National Dementia Strategy is funded by the government. The National Board of Health and Welfare considers that the effect of the recommendations on basic and extended examinations will be that the number of examinations will increase by about 7,000 per year at a cost of around SEK 41–59 million (about one per mille of the total costs for dementia-type illnesses). An increase in the quality of dementia examinations is expected to contribute towards more adequate care and a reduced need for emergency measures (e.g. hospitalisations), and should not lead to an increase in total costs.

Provisions or procedure for implementing the Strategy

It is possible to apply to the Swedish National Board of Health and Welfare for financial support to implement the guidelines. This will lead to an initial increase in costs but in the long run the guidelines are expected to lead to savings.    

Information about the guidelines has been widely disseminated throughout Sweden by representatives of the Swedish National Board of Health and Welfare. The guidelines are to be integrated into practice. As part of this procedure, the Alzheimer Society of Sweden is involved in training dementia nurses.

Procedure for monitoring progress made in achieving the goals set

Every person diagnosed with dementia should be registered in the Swedish National Dementia Registry. The National Board of Health and Welfare has drawn up different indicators for the follow-up of medical care, long-term care and welfare of persons with dementia illnesses. Of these, it is possible to monitor six through existing records at the National Board of Health and Welfare.

A major problem within this area is the lack of data sources (e.g. those input by the Social Services on behalf of people with dementia and within primary care). Furthermore, the existing data sources are not used in a correct manner. This means that it has still not been possible to continuously monitor eight of the quality indicators, whether at the national, regional or local level. It is therefore urgent that Health and Medical Care and Social Services develop individual-based data that enable the follow-up and evaluation of quality in medical care and the longer term care of people with dementia.

Involvement of the Alzheimer association (and/or people with dementia)

The Alzheimer Society of Sweden and Dementia Association were both part of the reference group which was consulted when the guidelines were being drafted. There were no people with dementia involved. The Alzheimer Society of Sweden recommended regional forums on the matter to ensure that the people with dementia were heard.

The National Guidelines reflect some of the themes addressed by The Alzheimer Society of Sweden during presentations which are held about 30 times a year for patients, next of kin and health personnel all over Sweden. Dementia Association, which had requested that guidelines be developed, closely follows the work of the National Board of Health and Welfare with regard to its work on these guidelines.

Alzheimer association’s overall assessment of the National Dementia Strategy

The Alzheimer Society of Sweden thinks that the National Dementia Strategy for Sweden provides adequate guidelines on how dementia care should be provided. They reinforce the individual’s right to diagnosis and treatment, facilitating dementia care both for patients and at the organisational level.

Diagnosis, treatment and research

Issues relating to diagnosis

Which healthcare professionals are responsible for diagnosing dementia

It is primarily the GP who examines and diagnoses a person with possible symptoms of dementia. Sometimes GPs prefer to refer patients with suspected dementia to a specialist for diagnosis. Young people are always examined in a memory clinic.

In Sweden, there is a dementia nurse in every community whom older people can consult if they have concerns about their memory. These nurses are fully trained to administer the MMSE and clock-test. If they detect a problem, they make a report which the person can then take to his/her doctor.

Well-functioning care centres have a GP with a good knowledge of dementia care who examines all patients with cognitive decline. Home visits are also possible. Many care centres do not have a GP with sufficient knowledge and patients experience an unsatisfactory examination. Many patients are not investigated for dementia. It is the aim of the National Swedish Board of Health and Welfare to have all patients satisfactorily examined.

Type and degree of training of GPs in dementia

Dementia is included in the training that GPs receive at university. However, the degree of training in dementia differs considerably from one university to the next.

In Autumn 2012, a new Masters in dementia care is starting. This is a web-based two-year Masters programme in dementia care for physicians. It has been developed through collaboration between the Karolinska Institutet and the Swedish Foundation Silviahemmet.

Over the last five years, some memory clinics have tried to educate GPs about dementia. Doctors from the memory clinic come out and visit GPs regularly.

The National Board of Health and Welfare also considers that Health and Medical Care and Social Services should offer staff the possibility of long-term training, combined with practical training, instruction and feedback.

Required tests to diagnose dementia

There is no simple assessment method that can ascertain whether a person has a dementia-type illness. The information below is based on the National Board of Health and Welfare recommendation. In the first place, Health and Medical Care should carry out a basic investigation of dementia that is based on:

•structural amnesia, interviews with those close to the person, assessment of the patient’s physical and psychological condition, assessment of cognition through cognitive tests (MMSE  together with the clock drawing test)

•structured assessment of function and activity capacity

•taking of samples to exclude other conditions that may cause cognitive impairment

•structural brain imaging with computer tomography that can contribute to identifying cognitive impairment and exclude other conditions in the brain that may cause cognitive impairment.

A basic investigation is not always sufficient to ascertain whether a person has a dementia-type illness. The Health and Medical Services advises carrying out an extended dementia examination that includes one or several of the following elements:

•neuropsychological tests

•structural brain imaging with magnetic camera

•lumbar punction for analysis of biomarkers

•functional brain imaging with SPECT.

Issues relating to medical treatment

The availability of medicines in general

The National Board of Health and Welfare recommended that Health and Medical Care offer treatment with cholinesterase inhibitors (donepezil, galantamine and rivastigmine) to combat cognitive impairment symptoms in people with mild to moderate Alzheimer’s disease.

Health and Medical Care should offer treatment with cholinesterase inhibitors (donepezil, galantamine and rivastigmine) to combat cognitive impairment symptoms in people with mild to moderate Alzheimer’s disease.

Health and Medical Care should also offer treatment with memantine for cognitive impairment symptoms in people with moderate to severe Alzheimer’s disease. Health and Medical Care should also follow up the treatment when the dose is adjusted and subsequently, at regular intervals of at least once a year. This should also include a consideration of the possible need to discontinue treatment.

The National Board of Health and Welfare considers that the effect of the recommendations on treatment with cholinesterase inhibitors and memantine entails an increase of medication costs by a maximum of SEK 170 million. The total cost to society as a whole for the treatment with medicine, however, is expected to be unchanged or to decline.

In Sweden, medicines on a special list are covered up to a certain degree depending on the overall expenditure on medicines of a patient during a twelve-month period.

If the expenditure does not exceed SEK 900 (approx. EUR 99), the patient covers 100% of the drug costs for a period of 12 months from the first purchase.

For expenditure between SEK901 and SEK1,700 (approx. EUR 186), the patient covers 50% of the costs.

For expenditure between SEK1,701 and SEK3,300 (approx. EUR 362), the patient covers 25% of the costs.

For expenditure between SEK3,301 and SEK4,300 (approx. EUR 471), the patient covers 10% of the costs.

Costs above SEK4,300 are subsidized totally.[1]

The availability of Alzheimer treatments

All AD drugs are available in Sweden and are part of the reimbursement system.

In Sweden, although many people, including GPs, feel that medical drugs are expensive, some AD drugs only cost EUR 180 per year in total.

Conditions surrounding the prescription and reimbursement of AD drugs

No specific examinations are required for medicines to be reimbursed and the system does not provide upper or lower MMSE limits for treatment with different AD drugs. Prescriptions can be made by specialists, as well as general practitioners. There are no restrictions as to the access of people living alone or in nursing homes to available treatments.

Prescription and reimbursement

Donepezil

Rivastigmine

Galantamine

Memantine

Available

Yes

Yes

Yes

Yes

Reimbursed

Yes

Yes

Yes

Yes

Initial reimbursed if prescribed by

Specialist doctor

Specialist doctor

Specialist doctor

Specialist doctor

Continuing treatment reimbursed if prescribed by

Specialist doctor

Specialist doctor

Specialist doctor

Specialist doctor

Required examinations

None

None

None

None

MMSE limits

None

None

None

None

Issues relating to research

Research is carried out mainly in universities and faculties. There is also an institute for brain research (Swedish Brain Power). Swedish Brain Power is a national consortium of researchers in the field of neurodegenerative diseases. The aim of Swedish Brain Power is to foster a link between clinical and basic research in nursing, particularly in relation to dementia and older people.

The National Knowledge Centre for Dementia compiles and disseminates information about scientific research, both in the clinical field and in basic science subjects. At the same time, the Centre runs a variety of courses for doctors, nurses, carers and other people with an interest in dementia.

Knowledge centres for dementia have been set up in several counties in Sweden. The Centre will contribute towards the development and dissemination of knowledge in dementia care.

Such development must be in accordance with the national guidelines for the care of dementia from 2010 (The National Social Welfare Board). The Centre runs a variety of courses for doctors and nurses.

Sweden is involved in the EU Joint Programme – Neurodegenerative Disease Research (JPND) and is an Associate partner in the Joint Action “Alzheimer Cooperative Valuation in Europe (ALCOVE)”.

References

National Social Welfare Board,Guidelines and recommendations on dementia care, Stockholm 2010, http://www.socialstyrelsen.se/

Acknowledgements

Kristina Westerlund, The Alzheimer Society of Sweden

[1] European Commission (2011): MISSOC – Mutual information system on social protection : Social protection in the Member States of the European Union, of the European Economic Area and in Switzerland : Comparative tables

 

 
 

Last Updated: Tuesday 14 May 2013

 

 
  • Acknowledgements

    The above information was published in the 2012 Dementia in Europe Yearbook as part of Alzheimer Europe's 2012 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from the Alzheimer Europe Foundation for the preparation and publication of its 2012 Yearbook.
  • European Union
 
 

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