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Sweden

2013: National policies covering the care and support of people with dementia and their carers

Background information

The National Dementia Strategy of the Swedish National Board of Health and Welfare (2010) is the first national guideline for care in dementia within the field. The guidelines emphasise evidence-based and evaluated treatments and methods of care for people with dementia and support for their next of kin. National guidelines for care in dementia include recommendations for both social services and healthcare. The guidelines include recommendations for diagnosis, person-centered care, pharmaceutical drugs, day care, accommodation and support to relatives.

The purpose of the National Board of Health and Welfare guidelines is that they will be a support for decision makers in municipalities, counties and regions so that they can control the healthcare and social services through open and systematic prioritisation. Some of the guidelines is aimed primarily at policy makers and business lines and is an aid to management and leadership at all levels of healthcare and social services. Other parts are mainly for unit managers, nurse practitioners and other health and social care staff.

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. These figures are

Place of residence

 

YES or NO

Estimated number/

Additional information

At home (alone)

 Yes

55% alone or with relatives

At home (with relatives or close friends)

 Yes

 

At home (with other people with dementia)

 No

 

In general/non-specialised residential homes

 No

 

In specialised residential homes for people with dementia

 Yes

15% (diagnosed cases)

In general/non-specialised nursing homes

 Yes

15% (diagnosed and

 undiagnosed cases)

In specialised nursing homes for people with dementia

 Yes

15% (diagnosed cases)

In hospitals, special wards or medical units

 No

 

In psychiatric establishments

 No

 

Other (please specify)

 No

 

The National Board of Health and Welfare recommends that people with dementia should be able to remain living in their own home for as long as they can and wish, with the help of relatives, home care, day care and home healthcare.

Later in the disease course, the National Board believes that the social services should offer people with dementia a place in a small-scale residential care unit specifically designed for people with dementia. Social services should also work to ensure that the accommodation environment is personalised, home like and enriched and that the people who need to go outdoors are given the opportunity to do so.

The National Board also believes that social services should promote a psychosocial residential environment characterised by safety and availability, and where the person with dementia can enjoy meaningful activities throughout the day.

However, there are very large differences between municipalities in the organisation and staffing, as well as in the content, of the health and social care for people with dementia.

Younger people with dementia have special requirements, and specialist multidisciplinary services should be developed, allied to existing dementia services, to meet their needs for assessment, diagnosis and care. Day care and residential care for younger people with dementia is available in certain municipalities.

Information is not available on the percentage of residents in various residential care settings who have dementia or on the ratio of staff to residents in different establishments.

The organisation of care and support for people with dementia

The overall organisation of care and support

The public responsibility for care of the elderly in Sweden exists at three levels. At the national level, parliament and the government set out policy aims and directions by means of legislation and economic steering measures. At the regional level, it is the county councils that are responsible for health and medical care. At the local level, the municipalities are legally obliged to provide social services and to meet the housing needs of the elderly. People with dementia have the same rights as other fellow citizens. Further information can be obtained from the Swedish Association of Local Authorities and Regions (www.skl.se).

According to the Social Services Act, individuals in Sweden have the right to receive public service and help at all stages of life.

Social services in each municipality have the main responsibility for providing care for the elderly. This is their duty under the Social Services Act. The Act states that elderly people must be able to live and lead independent lives in safe conditions and have an active and meaningful existence in the company of others.

Examples of the most common services include home help for tasks such as shopping, laundry and cleaning, but also personal care, meals and emergency alarms. People may also apply to move to special housing accommodation.Municipalities are entitled to design health and social care services that are adapted to local conditions. This means that the support offered to elderly people may vary.

The Social Services Act, the Health and Medical Services Act and the Act concerning Support and Service for Persons with Certain Functional Impairments guide the municipalities' work on health and social care for elderly people. The municipalities are responsible for certain aspects of health and medical care for elderly people under the Health and Medical Services Act. Care of the elderly must focus on enabling elderly people to live in dignity and enabling them to feel a sense of well-being. This provision applies to both publicly and privately run operations.  Under the Social Services Act, elderly people must be able to choose, to the extent that is possible, when and how they receive support and help in the home and other services. The municipalities are responsible for the financing, content and most of the actual delivery of care services.

The National Board of Health and Welfare is the expert and supervisory agency for social service activities.

How specific aspects of care and support are addressed

Care and support which is relevant to people with dementia and their carers is specifically addressed in various national policies.

The Healthcare Act (1982:763). Health services must be operated to meet the requirements for good health. This means that health services should be of a high quality and should meet patients’ needs for security in care and treatment, be readily available, based on respect for patient autonomy and integrity, promote good contact between the patient and healthcare staff and meet the patients' needs for continuity and safety of healthcare.

The Social Services Act (2001:453). Society Social Services shall, in keeping with the principles of democracy and solidarity, promote economic and social security, equality of living conditions, and active participation in society. Activities should be organised on the basis of respect for people's autonomy and integrity.

Social services care for the elderly should give people the opportunity to live in dignity and should promote well-being. The Social Services Committee should strive to give older people the opportunity to live independently in a safe environment and have an active and meaningful life in community with others. The Social Services Act (2010:427) provides that the Social Services Committee should ensure that older people have access to good housing and provide easily accessible services to those who need support and help in their homes. The municipality will establish special housing for the service and care for older people who require special assistance. The older person should as far as possible, be able to choose when and how support and help in housing and other easily accessible services should be provided. Act (2010:427).

The Swedish Council on Health Technology Assessment

The Swedish Council on Health Technology Assessment is the authority that evaluates medical practices. Reports from TheSwedish Council on Health Technology Assessment(SBU) represent a support for decision making within healthcare and describe the benefits, risks and costs of various treatments, tests or other measures. SBU strives to promote care consciously and systematically, basing its decisions on the best available scientific facts (evidence), which must be combined with clinical experience and each patient's own wishes. (See www.sbu.se for further information.)

The National Board of Health and Welfare recommendation on dementia care            

Person-centred care is a central concept. Person-centred care means that staff in healthcare and social services treat the person with dementia as a person with experience, self-esteem and rights despite decreasing functions, strive to understand what is best for the person with dementia from his/her perspective, cherish the person’s self-determination and the opportunity for staff to see the person with dementia as an active partner, confirm the person’s experience of the world, strive to involve his/her social networks in healthcare and social services, and try to establish a relationship with the person with dementia. 

National Healthcare Quality - National quality registers

In Sweden there are 73 national quality registers. Quality Registers allow for learning and continuous improvement, and they are a necessary ingredient of a modern healthcare system. The National Quality Directory is a system for monitoring and developing treatment results. It contains individual-level data on the problem, the actions taken and outcomes in health and social care. Once a record has been fully developed, it is possible to follow up the progress made in healthcare for all patients in the country.

National quality registers involve a decision group consisting of participants from the National Board of Health and Welfare, the Swedish Association of Local Authorities and Regions (SKL),theSwedish Society of Nursing and the Swedish Society of Medicine. “National Quality” is coordinated by the Swedish Association of Local Authorities and Regions.

There are four registers that are very useful in dementia care. These records are used by most municipalities in the country.

  1. 1.   The “Swedish Dementia Registry”(Svedem) aims to improve the quality of dementia care in Sweden by collecting data to monitor changes in populations, diagnoses and treatment of dementia. The goal of the registry is to ensure an equivalent, optimised treatment of patients with dementia.
  2. The “Behavioral and Psychological Symptoms of Dementia” (BPSD) is a national quality register. The registry is intended to ensure the quality of care provided to people with dementia. Prior training is available on how to practically apply the registry.
  3. The “Senior Alert - National Quality” registry focuses on preventative care. People in care who are 65 years and older who are at risk of falling, developing pressure sores, becoming malnourished or suffering from dental/oral problems can be registered in Senior Alert.
  4. The National Council for Palliative Care, supported by the National Board of Health, has established a national palliative quality registry. The purpose of the registry is to gradually improve the care of the dying. Activities that should be included in the registry are based on the stated goal to pursue palliative care according to the WHO definition and a defined mission to pursue palliative care.

For business managers and supervisors, the statistics extracted from the registry can be used to measure the burden of care, or for quality assurance and comparison with the rest of the country.

Care planning

In all the planning, the social and health services work together so that the needs of the person with dementia, both for social care and healthcare, are met. Health and social care planning, based on effective cooperation between the person with dementia, families and staff, can increase the possibility of individual self-determination and help ensure that health and social care is individualised.

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.

Social or healthcare professional

Involved in the provision of care and support to people with dementia in residential care or at home

Nursing staff

Yes

Auxiliary staff

Yes

Allied health professionals

Yes

Specialists (e.g. psychiatrists, gerontologists, neurologists)*

Yes

General practitioners*

Yes

Other

Care managers and unit managers

* 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 nursing programme is comprised of 180 credits. Completion of course requirements leads to a degree in nursing (professional degree, Bachelor of Science in Nursing) and Medicine Bachelor of Nursing Science (Bachelor of Medical Science in Nursing). Supplementary education for older nurse would be desirable.

Auxiliary nurses can work in emergency care, clinics, home care, elderly care, psychiatry and group homes. Access to employment in any of the above professions requires the acquisition of between 1350 - 1500 points of health and social care courses. When targeting the care of older people, 100 points in dementia care must be acquired.

The National Board of Health and Welfare recommends multidisciplinary work. The people who participate in the multi-disciplinary work may vary over time. Often, doctors and nurses are the first professionals that people have contact with but as the need for care increases, other professionals become involved. This could include care managers, unit managers for older people, dementia nurses, nursing assistants, social workers, occupational therapists, physiotherapists and neuropsychologists.

In specialised residential homes for people with dementia, staff members are usually trained nurses and auxiliary nurses. In other care settings, it is very different. In one place, all the personnel might be qualified, whereas in another, 40% may have no training.

It is the aim of the National Board of Health and Welfare that staff should have at least nurse and auxiliary nurse education and special skills in dementia.

The type of training that social and healthcare professionals receive

There are many educational opportunities in dementia care. It is difficult to provide an equitable distribution across the country.

University and College education 

The Doctors’ Specialisation in dementia care consists of 60 dredits. There is now an online Master’s course in dementia care for general practitioners. The first course started in 2012. The programme presents the latest research in the field of dementia including diagnostics, disease mechanisms, palliative medicine and treatment. After graduating, doctors are awarded the title ”Silvia Doctor”. (See http://www.info@ki.se for further details.)

Nursing Specialisation in care of the elderly, 60 Credits. Specialist Nurse targeting elderly care is responsible for the promotion of health and prevention of disease and disease complications of the elderly. The education create opportunities for lifelong development and a dignified death. A base of the complex needs of the care and rehabilitation of older and professional experience as a nurse is a requirement. Available at 7 colleges in the country. (See www.regeringen.se/demestsjukaaldre for further details).

Nursing Science with specialisation in dementia - Silvia Nurse, 30 Credits.

It has a distinct nursing perspective on the palliative care philosophy with symptom control, communication and relationships, teamwork and support to families. After completion of the training you’re provided the title “Silvia Nurse” by HM Queen Silvia at a ceremony at Silviahemmet, Stockholm. (See www.shh.se for further details.)

Specialisation in dementia care for auxiliary staff, 30 Credits. 

The training is based on the palliative care philosophy. After completing the training, students receive a brooch and provided the title “Silvia Sister” by HM Queen Silvia at a ceremony at Silviahemmet, Stockholm. Today, there are 371 certified Silvia Sisters in Sweden. (See www.shh.se for further details.)

National skills training, 1-3 weeks.

This training is aimed at staff working in the care sector who are responsible for people with dementia. This could include registered nurses, unit managers, care managers, occupational therapists, physiotherapists, nurses and nursing assistants. There is a great emphasis on the latest research findings on Alzheimer's disease and other forms of dementia. (See www.kcgeriatrik.se for further details.)

Online Education

Dementia ABC was launched in 2010 in conjunction with the National Board of Health and Welfar who published national guidelines for dementia care. Through online education, the Swedish Dementia Centre helps ensure that the National Board recommendations are applied in assisted living communities and nursing homes and result in good dementia care across the country. The Swedish Dementia Centre  also provides training for community health centres, care managers and homecare. Training for inpatient care and assisted living facilities is also planned. The courses are free of charge. (See www.demenscentrum.se for further details).

MigrationSchool

The proportion of older people with a foreign background is increasing in Sweden. The goal of web training is to increase the knowledge of all interested parties and to adapt dementia care so that people who are born abroad receive the same quality of dementia care as that provided to native Swedes. A free dementia course in Farsi is now available on the web. (See www.kc.minneskliniken.sus@skane.se for further details).

How the training of social and healthcare professionals is addressed

The National Board of Health and Welfare Recommendation on Training.

The Healthcare and Social Services should provide educational opportunities to staff, mainly nurses and auxiliary nurses, who work in healthcare, nursing and the care of people with dementia. Such training should be long-term and combine practical training, supervision and feedback. Although there are no explicit requirements for education, the advantages of such training are described as being:

  • To help increase staff knowledge and positively affect their behavior and attitude towards people with dementia.
  • To decrease the number of behavioural and psychological symptoms in people with dementia and increase their welfare.
  • To have a positive impact on their work (job satisfaction, experience of fatigue) and on nursing content through tutoring in combination with training.
  • To achieve best results through long-term education combined with practical training, coaching and feedback.

 Different employers then set different requirements. A good employer requires some nurse and auxiliary staff to have Silvia Sister Training. These staff may then become tutors and mentors for the other staff. A few care establishments require 7.5 credits in dementia. Many require that all of the employees in the unit have had at least a week's dementia training. Some employers require all their staff to undergo Dementia ABC training. Some jobs require new staff to read through Dementia ABC computer courses prior to starting work. Many people who work in dementia care would like to have clear training requirements.

The support of informal carers

The Social Services Act (2010: 427) addresses the care of older people and one of the provisions of this act is that  the municipalities in Sweden must offer support to people caring for a loved one who is chronically sick, old or has disabilities. This includes providing support to people who care for a person with dementia. Home help services and other assistance provided to people with dementia may also be beneficial to carers and relatives. The range of initiatives varies from one municipality to the next. Typical examples include: daytime activities, home help services and assistance in the home, consultation and training, respite care, discussion groups, technical assistance, and meeting venues for friends and family. When friends and family members of people with dementia contact the Alzheimer’s Association, Dementia Association and The National Association for Friends and Family, they can also receive advice and support, and share their experiences with people in similar situations through their local groups, which also organise lectures, workshops and excursions.

The National Board of Health and Welfare Recommendations on the Support of Carers

In the recommendations on the support of carers of the National Board of Health and Welfare (2010), it is stated that a combination of education, psychosocial support and different types of skills training has a positive impact both on families and on older people with dementia.

Recommendation for support for information carers:

• It is given in a structured form, i.e. there should be a manual or a procedure to follow,

• It is run by people, who are trained to provide support,

• It covers 8 to10 meetings over a period of 3 to 6 months,

• Meetings following urgent themes such as education about the disease, treatment, or what support social care offers,

• It provides practical training on how to handle difficult situations and changes in behaviour.

• It provides opportunities to practice between the meetings,

• It provides psychosocial support, such as emotional support, advice or help to manage stress.

National Alzheimer Association

The Alzheimer Association of Sweden provides the following services and support.

Helpline

x

Information activities (newsletters, publications)

x

Website

x

Awareness campaigns

x

Legal advice

x

Care coordination/Case management

x

Home help (cleaning, cooking, shopping)

 

Home care (personal hygiene, medication)

 

Incontinence help

 

Assistive technologies / ICT solutions

x

Tele Alarm

 

Adaptations to the home

 

Meals on wheels

 

Counselling

x

Support groups for people with dementia

x

Alzheimer cafes

x

Respite care at home (Sitting service etc.)

 

Holidays for carers

 

Training for carers

x

Support groups for carers

x

 Day care

 

Residential/Nursing home care

 

Palliative care

 

References

The National Board of Health and Welfare (2010). Guidelines and recommendations on dementia care. [Socialstyrelsen (2010). Nationella riktlinjer för vård och omsorg vid demenssjukdom] Summary in English can accessed at:

http:www.socialstyrelsen.se/nationalguidelines/nationalguidelinesforcareindementia 

Website of the Swedish Council on Health Technology Assessment:  www.sbu.se/en

Website of the Swedish Association of Local Authorities and Regions: www.english.skl.se

Acknowledgements

Kristina Westerlund, Administrative Director, The Alzheimer Society of Sweden

 

 
 

Last Updated: Tuesday 25 February 2014

 

 
  • Acknowledgements

    The above information was published in the 2013 Dementia in Europe Yearbook as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme.
  • European Union
 
 

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