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2016: Decision making and legal capacity in dementia


Consent to medical treatment

The issue of consent is addressed in paragraph (§) 2a of the Health and Medical Services Act (Halsooch sjukvardslag 1982:763) which states that "health and medical services shall be conducted so as to meet the requirements of good care" - one such requirement being the obligation to respect the patient's self-determination and integrity. In § 2b of this article further stipulates that care and treatment shall as far as possible be designed and conducted in consultation with the patient.

Relatives have generally been consulted but they do not have a specific right to consent to treatment on behalf of an incapacitated person. Consent can be obtained from a custodian who is responsible for ensuring that his/her ward receives the care that he/she needs. If this is not possible and the patient is unable to consent, the doctor must decide on the appropriate treatment in the light of medical science and proven experience. Patients who are subject to involuntary internment are consulted whenever possible during the period of care. However, the chief medical doctor of the unit in which the patient is being cared for ultimately decides questions concerning treatment. Where appropriate, a patient's next of kin is also consulted. The significance of the next of kin (anhoriga) is seen only as a recommendation to the patients' own will and capacity to judge for self.

Medicine is given to people with dementia without their full consent possibly by their next of kin or care-persons, but this is to be seen as an exception and a consequence of memory loss. Such events could be seen as a breach of the law, e.g. in Sweden it is considered to be the same thing as placing drugs in a person’s drink at the nightclub. The Swedish county council and the Swedish Social Services that are governed by the Swedish municipalities are to report any misconduct of patients that are in the need of custodianship.

In the health-care process of a patient, staff and care-taking persons in the council, will face situations where consent to care will be difficult to receive from the patient. According to Socialstyrelsens (The National Board of Health and Welfare) policies and recommendations, the governmental authority that audits the work of Swedish health-care, Swedish councils and the municipalities' social services organisations; the patients' consent should always be there before medication.

Consent to research

The Swedish National Council on Medical Ethics is an advisory board to the Swedish Government on ethical issues that arise as a consequence of scientific and technological advances in medicine. The council analyses the issues from a broad national perspective.

In 2004, a new law was introduced in Sweden: The Act on the Ethical Review of Research Involving Humans (Lag 2003:460 om etikprovning av forskning som avser manniskor). It covers research on living persons, but it also covers such fields as research on the deceased, research based on biological material from pea-pie and research that deals with sensitive information about people including information regarding criminal offences.

There are six regional research ethics committees and one central ethics board. According to the law, these bodies are given detailed instructions regarding their work, i.e. what their duties consist of. This year, the Government is proposing to Parliament some revisions in the law with the aim of elucidating certain paragraphs.

The law contains extensive rules on information and consent. In principle, research-involving living people require that the person in question has been informed and has given his/her consent. In some cases, research can be carried out without consent from the person concerned if he or she suffers from a mental disorder or poor health. In these cases, close relatives or guardians should be consulted.

Advance Directives

Legal Status of Advance Directives in the country

In Sweden there are no legal practices for advance directives, that is e.g. legal documents (as a living will) signed by a competent person to provide guidance for medical and health-care decisions (as the termination of life support or organ donation) in the event the person becomes incompetent to make such decisions as from dementia.

In 2006 there was a letter of referral by the Swedish law council initiated, due to the critique from the European Parliament, to investigate forced care-practices (override constitution) for persons with dementia. Such care-practices would be: to move to a care-home against ones 'own will, to lock in persons with dementia, retain persons in a house, bring back a person from the outside to a house, use a gate for the hospital bed, permanently place food trays on the hospital bed and electronic devices and alarms montaged on individuals. It did not lead to any further legal adjustments at the time.

In 2009 the Ministry of Health, gave the underlying unit Svenskt Demenscentrum the task to investigate forced care-practices for demented patients once more, with inspiration from Norway, Holland and specifically the Mental Capacity Act in England and Wales 2007.

The report published 2012, mentioned specifically that Swedish law lacks: legal procedures for dementia overall, legal capacity for demented persons that encloses the ability to take important decisions meaning: 1) to understand information 2) to remember the information as long as necessary to enable a decision making process/initiative 3) to be able to evaluate accessible information to judge and make the decision 4) to be able to communicate (speech, blinking of eyes, writing etc.) ones decision to other persons. Other aspects that were mentioned in the report were: security in courts, outcomes of governmental educations initiatives via Svensk Demens centrum etc.

The report states that: initiatives to move persons from their home to a care-home is no longer an interesting aspect to evaluate, a cultural tradition resides in Sweden: "Kvarboendeprincipen" that means: to be able to live in the home as long as the individual citizen lives even though one has severe symptoms of dementia/other functional disabilities. A case of prejudice from the Supreme Court in Sweden is underlying that statement. Forvaltningsdomstolen. {2008) . Mal: Regeringsrtittens dom den 10 november 2008, mal nr 7020-06: Stockholm: Hogsta Forvaltningsdomstolen.

In parallel year 2012, The National Board of Health and Welfare the auditing authority of care-practices in Sweden, published the first (without strict obligations to comply for the 25 Swedish municipalities): National guidelines for care-practices in Sweden in the care of persons with symptoms of Dementia ("Nationella riktlinjer for vard och omsorg vid demenssjukdom"). It was updated year 2014 and work is ongoing for a new version year 2016/2017.

Legal Capacity

Issues surrounding the loss of legal capacity

The individual citizens right to integrity cannot be exposed to any constrains and restrictions from society, this is regulated by the Constitution (Regeringsformen 2 chapter, 20-24 §§) and each citizen is protected against deprivation of liberty by any other person or the public domain (Regeringsformen kap. 2:2 and 8 §). Within the capacity of Swedish Social Services lie restrictions based on the system of government, regarding the young (Lag 1990:52 om Va rd av Unga, LVU) and persons with addictions (Lag 1988:870 om vard av missbrukare I visa fall, LVM). Within the capacity of Swedish county council lie constraints based on the system of government regarding forced psychiatric care of persons (Lag 1991:1128 om psykiatrisk tvangsvard, LPT). The law of forced psychiatric care can be applied when the patient does not want or can participate in care, and the patient is in possession of a severe psychological degree independent of a disease etiology; that is disrupted perception of reality, distortion, hallucinations or delusions. Today the Swedish system of government applies consistently and fully to persons with dementia. Only at extreme one-time - recurring situations of need, force-majeur, force or care-taking personnel will allow deprivation of freedom acts to persons with dementia. The Penal Code Brottsbalken 1962:700 chapter 31 On committal to special care and chapter (Om overlamnande till vard i vissa fall) 32 On committal to special care for miner (Om overlamnande till sarskild vard av unga).

Proxy decision-making


Three different forms of guardianship exist in Sweden: guardian (for minors under 18), custodian (god man) and trustee (forvaltare).

Conditions for the appointment of a guardian

According to the Code on Parenthood and Guardianship (Foraldrarbalken 1949:381chapter11, § 4): "If, because of sickness, mental disorder, a weakened state of health or the like, a person needs assistance in safeguarding his rights, administering his property or providing for his needs, the Court shall, if needed, appoint a custodian (god man) for him."

According to paragraph 7: "If a person who is in such a situation described in paragraph 4 is unable to take care of himself/herself or his/her property, the court can appoint a trustee (forvaltare) for him or her."

A custodian (god man) is usually appointed when a person is unable to manage his/her own financial affairs and has no other means of assistance. It is frequently used in cases of dementia. The system of trusteeship, on the other hand, is used when the conditions for appointment of a custodian exist, but it is felt that the need is not sufficient to warrant such an appointment (in which case a trustee may be appointed).

How guardianship is arranged

Request for a custodian (god man), should be made by the individual concerned, the immediate family and the chief guardian or the Public Trustees' Committee (Overformyndaren in respective municipality). An application must be made and sent to the Public Trustees' Committee, along with a social welfare report outlining the reasons for the application. If possible, this should be approved by the person for whom the request is being made. If not, a medical certificate, from the chief medical doctor caring for the person, stating that the person in question was unable to consent, must accompany the application. A copy of the person's birth certificate must also be included in the application. If a particular custodian is to be proposed, s/he must confirm her/his willingness to take on the responsibility. The Public Trustees' Committee then carries out an examination and afterwards submits an application to the District Court. Once the District Court has made its decision, it issues a custodian's authorisation which the custodian can then use as a means of identification and proof that s/he is the custodian.

The appointment of a trustee (forvaltare) involves more or less the same procedure. However, if at all possible, the District Court prefers to have a verbal examination of the person for whom the application is being made. A doctor's report must be provided and unless obviously unnecessary, statements must be obtained from the spouse, close rela-tives, the Public Trustees' Committee and the Social Welfare Committee.

Who can be a guardian?

The conditions for someone to be appointed as custodian or trustee are that the person is honest, has relevant experience and is an eligible man or woman. The public trustee committee in each one of the 25 Swedish municipalities hold policies and recommendations, books with advice etc. for guardians and guardianship. There is today no national policies or strict recommendations for guardianship in Sweden and no governmental authority is appointed to audit the quality of custodian work or the work of the public trustee committees.

The duties and responsibilities of guardians

It is the duty of the custodian to ensure that the ward receives the care and supervision that s/he needs. As a rule, the custodian also has responsibility for the ward's financial affairs. 6(9) Trusteeship replaced the system of declaring people incompetent, which was discontinued in January 1989. The duties of the trustee differ from one case to the next according to the particular needs of the ward. The trustee may be limited to managing the ward's property or part of his/her capital. The ward then loses the right to make decisions relating to such matters, but retains his/her legal competence in all other matters.

How the financial affairs of the ward are handled?

Within one month of being appointed, the custodian has to submit a list of the ward's assets and liabilities to the Public Trustees' Committee. This must include personal details of the ward, a list of assets, a list of bank assets (including the names of bank, account numbers and statements of accounts), details of securities (shares and bonds), details of real estate, details of owner-occupied dwellings and details of liabilities. Personal details of the custodian should also be included.

Certain bank accounts must be blocked to prevent unauthorised withdrawals. If it is necessary to access these funds, the approval of the public trustee must be obtained. Funds needed to cover daily expenses can be placed in an unblocked account. All accounts remain in the name of the ward. The custodian should contact the ward's landlord/landlady, the telephone company and the insurance company etc. so that future bills can be sent to the correct address. The duties of the trustee are determined on a case-by-case basis.

Measures to protect the ward from misuse of power

It is the duty of every municipality to appoint either a single public trustee or a committee of public trustees, whose task it is to supervise the guardians (for minors), trustees and custodians. The aim of this supervision is to ensure that the rights of the elderly, sick, handicapped and minors are respected.

It is the responsibility of the public trustee or Committee of public trustees appointed by the municipality to supervise the work of trustees and custodians. Every year, an account of the administrative work of the preceding year must be submitted by trustees and custodians to the public trustee. The annual account must contain details of assets and liabilities, income and expenditures, a statement of bank accounts (including deposited securities and certificates for other funds) and details of any blocked accounts. A final account must be submitted when the assignment comes to an end or the ward dies. The public trustee who examines the accounts can set a fee for this task.

Compensation and liability of guardians

Both custodians and trustees receive fees for their services and can also receive compensation for costs. Fees and compensation for costs are paid from the ward's funds if his/her income totals more than twice the base amount 34 or if his/her assets exceed three times the base amount. If this is not the case, the set fees are paid by the municipal authority. This is determined by the public trustees.

Duration of guardianship

The guardianship measure lasts until it is no longer needed, that is until the person of interest, that holds custodianship or guardianship dies or no longer has the ability to have legal capacity. Decisions regarding the dis-continuation of guardianship measures are made by court or the chief guardian.

The right to appeal

Individuals who are affected by decisions made by a district court with regard to guardianship have the right to appeal.

Powers of Attorney

Only the person himself that is directly affected and still by the legal capacity to aim for an appeal is able to initiate the process of an appeal to the county administrative court in Sweden.

Capacity In Specific Domains

Marriage and divorce

In order to marry, a person must be at least 18, not closely related to his/her future partner and not already married. Up until 1989, people who were under guardianship had to obtain special permission to get married. This is no longer the case and a person for whom a trustee or custodian has been appointed can still get married without needing to first obtain permission. There are no explicit requirements in Swedish law that the people contracting a marriage should actually understand the significance of it. Otherwise the constitutional law of business and transactions (Avtalslag 1915:218, 3 chapter 31 §) can be applied that regulates when a person's need, ability to understand, lightheadedness or dependency has been forced into an agreement.

Voting capacity

A person who is a Swedish citizen and at least 18 years of age may vote, as the system of declaring a person incapacitated has been abolished. Moreover, anyone who has the right to vote can also candidate for politician parties.

Contractual capacity

Since the practice of declaring a person incompetent has been abolished, even a person suffering from severe dementia retains his/her capacity to enter into legal relations. However, a contract can be rendered invalid. The law of 1924 (Lag 1924:323 Om verkan av avtal som slutits under paverkan av en psykisk sterning) on the Effect of Contracts Concluded Under the Influence of a Mental Disturbance states that a contract is invalid if someone who was suffering from a mental disorder at the time made it. In such cases, the parties making the deal must return any goods which were exchanged and, if this is impossible, must provide appropriate compensation. In 1991, another§ was added (SFS 1991:1550) which states: "Anyone with whom a contract is concluded in good faith has, to such an extent as is found reasonable, a right to receive compensation for the loss occasioned by the contract."

Testamentary capacity

The following two articles in the Inheritance Code (Arvdabalken 1958: 637) cover the issue of validityof wills. "A will that has been written under the influence of a mental disorder is not valid." (Chapter 13, §2) "If someone has forced the testator to write his/her will or abused his/her lack of judgement, weak will or dependence, the will is not valid." (Chapter 13, §3)

If someone wants to challenge a will, they must go to court and it is their responsibility to find expert witnesses. People do not usually have a medical assessment before writing a will and most doctors are reluctant to be expert witnesses.

Civil responsibility

Chapter 2, paragraph 5 of the Damages Act (Skadestandslag 1972:207) deals with the responsibility for damage brought about by oneself when suffering from a mental disorder. The text reads as follows: "Anyone who inflicts damage upon persons or things under the influence of a serious mental disorder or of any other mental disorder that is not self-inflicted and temporary shall make compensation for the damage to such extent as is reasonable, account being taken of his/her mental condition, the character of his/her actions, available liability insurance and other financial resources as well as other circumstances."

Criminal responsibility

According to Chapter 30, § 6 of the Criminal Code (Brottsbalken 1962:700): "A person who commits a crime under the influence of a serious mental disturbance may not be sentenced to imprisonment. If, in such a case the court also considers that no other sanction should be imposed and the accused can even sometimes go free from sanction". (Law 1991:1138 and 2008:820)

4.7 Driver license and right to carry weapons

It is in principle prohibited to people with a diagnosis of dementia to have a driver's license in Sweden, and it is in a medical doctors’ responsibility regulated by the constitutional law of driving licenses (Korkortslag 1998:1276 10 chaRter 2 & 5 §§) to report to the Swedish transport council (TransRortstyrelsen) a person who is unfit to drive because of dementia symptoms and continues to do so. When a citizen in Sweden that have a hunting license and right to carry weapons for hunting receives a dementia diagnosis it is by principle and in Socialstyrelsens guidelines 2008:21 that this person immediately stops to utilise his hunting tools and practices. It is in a medical doctor’s responsibility regulated by the constitutional law of weapons to report any misconduct of these principle to the Swedish police.


This text has been written based on the following sources in Sweden: Socialstyrelsens eddelandeblad Nr 12/2013, "Nollvision", a handbook on dementia and care-practices of dementia from the Swedish Dementia Centre (Svenskt Demenscentrum, 2015), The Swedish Law, Svensk Forfattningssamling, SFS, on the electronic platform supplied by the Swedish government, Socialstyrelsnes handbook of application and recommendations for care prractices regulated in lex Sarah 2014 and lex Maria SOSFS 2005:28).














Last Updated: Thursday 09 February 2017


  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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