Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Denmark
Denmark has a national health service which aims to ensure that all citizens have equal access to healthcare services. This includes free home nursing. A local government reform came into force on 1 January 2007. The Consolidation Act on Social Services was part of this reform.
The organisation of social support for people with dementia and carers
Social support to people with dementia and carers is the responsibility of the Ministry of Social Affairs. The Ministry of the Interior and Health is responsible for healthcare. According to §83 of the Consolidation Act on Social Services, the municipal council shall offer personal care and assistance as well as assistance or support for necessary practical work in the home to people who are unable to carry out these activities “due to temporary or permanent impairment of physical or mental functions or special social problems.” The actual services to be provided in accordance with the Consolidation Act on Social Services are determined by the municipal council which can also pay for services from the private sector.
When arranging for the care and attendance of a person with a diagnosis of dementia, the municipal council must as far as possible respect his/her wishes for future care, attendance and housing as expressed in a “care testament” (§83.4).
The provision of services is determined by the municipal council on a case by case basis subject to an assessment of needs. The aim of the assistance provided is partly to maintain physical or mental skills and partly to remedy the most serious consequences of impaired physical or mental functions or special social problems. Service users are entitled to a choice of different providers for the services to which they have been assessed as being entitled. They can also choose between public and private service providers.
The overall funding of social support for people with dementia and carers
Social support for people with dementia and carers is financed through general taxation.
The State does not directly support Alzheimer associations but associations can apply for endorsement from Tips og Lotto (surplus from gambling) which is granted on the basis of the funds that the organisation has raised itself.
Paragraph 18 of the Consolidation Act on Social Services states that the municipal council must cooperate with voluntary social organisations and associations and that each year it must allocate funds to support voluntary social work.
The legal framework surrounding the provision of social support
The Consolidation Act on Social Services of 18 January 2007 is relevant to the provision of social support to people with dementia and their carers.
There is no legal obligation to have a specific policy for dementia care in Denmark. However, chapter 25 of the Consolidation Act on Social Services demands quality standards and action plans for all kinds of services rendered.
According to §82 (1) of this act, municipal councils must provide assistance to people with substantial mental impairment who are unable to attend to their own interests even if they are unable to consent to it but such assistance cannot be administered by means of physical coercion.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Adequate information on people’s rights and possibilities with regard to services and support is still lacking.
People from ethnic minorities
The State partly finances support for people with dementia and carers from ethnic minorities but such support is scarce. It is sometimes also provided by NGOs, volunteers and the Church.
Younger people with dementia
Some services are only accessible to younger people with dementia (i.e. under the age of 67). On the other hand, day care facilities for younger people with dementia are lacking.
Paragraphs 96 and 97 of the Consolidation Act on Social Services provide special provisions for people under 67 with substantial and permanent impairment of physical or mental function with an activity level requiring particular support.
Services and support for people with dementia and their carers
Types of care
Day care centres exist and are completely funded by the State but they are not for younger people with dementia. Day care is also provided by private organisations.
The municipal council is obliged to offer substitute or respite care services to spouses, parents or other close relatives caring for a person with impaired physical or mental function (Consolidation Act on Social Services, §84, 1)
Respite care services at home, as well as short-term and long-term residential respite care, exist and are completely funded by the State. Private organisations also offer sitting services but the availability of respite care at home in case of acute need is often problematic.
Long-term residential care
The cost of long-term residential care is divided into the cost of housing and the cost of care. The latter is essentially free. With regard to the cost of housing, the person pays a rent and is considered a tenant. Prices vary quite a lot. A bill has been passed which limits the waiting time for a place in residential care to 2 months but this will not come into force until 2009. Meanwhile, there is a shortage of places.
Palliative care at home is provided in the form of home care nursing which is completely funded by the State. Similarly, there is a growing number of hospices and palliative care units in hospitals. Nevertheless, palliative care is only partly developed in Denmark and is therefore insufficient.
Monitoring in the home via alarm systems
Tele-alarm systems are completely funded by the State but the municipalities have different levels of service.
Personal assistance and home help
The following services exist and are completely funded by the State but availability varies from one municipality to the next:
- Assistance with personal hygiene
- Supervision/assistance taking medication
- Assistance eating and drinking (not the preparation of food)
- Assistance with mobility e.g. lifting, moving and walking
- Assistance with incontinence
- Assistance with skin care
- Occupational therapy/ergotherapy
- Assistive devices
Companionship/social activities are also available and partly funded by the State but not for younger people with dementia. With regard to supervision/assistance taking medication (mentioned above), this is covered within the legal framework regulating the provision of services but in practice, it is unclear whether this service is widely available. Information was not available on home adaptations/transformations.
The following services exist and are completely funded by the State but availability varies from one municipality to the next:
- Assistance with housework e.g. cleaning, dusting and tidying
- Help with the preparation of meals (including meals on wheels)
- Assistance with shopping
Transportation services and laundry services are also available but are only partly funded by the State. According to the Danish Alzheimer Association, transportation services for mentally disabled people are not very effective.
Psychosocial support and training for people with dementia and carers
A general information service exists covering access to services. Counselling for people with dementia and carers is also available. These services are partly funded by the State but are insufficient as they do not meet current demand. However, many private organisations, NGOs and volunteers also offer these services.
Concerning holidays for people with dementia, there are only scattered offers based on private initiatives from NGOs, volunteers and the Church for which people with dementia must contribute towards the cost. The only holidays for carers are those which are made possible through the provision of respite care (which is completely funded by the State).
The State completely finances training for carers. This is insufficient but it has improved considerably in the last few years.
Work/tax related support for people with dementia
The rights of people who have been diagnosed with dementia and who are still in paid employment are partly covered by legislation relating to the rights of people who are ill or disabled.
People under 67 years of age with substantial and permanent physical or mental impairments and with an activity level requiring particular support are entitled to a subsidy towards the cost of engaging assistant carers, supervisors and attendants. This is paid directly to the person in need of care (known as the recipient) provided that he/she can handle the organisation of such assistance. A person under 67 whose freedom of movement is impeded due to substantial and permanent physical or mental impairment is entitled to 15 hours of attendance (which continues after the age of 67). He/she can designate a person to act as attendant who is then employed by the municipal council (if accepted by the latter). People with close connections to the recipient are not usually accepted for this job. Alternatively, the municipal council may decide to make a cash payment to the recipient in order to hire an attendant him/herself. Additional expenses incurred by the recipient for the attendant’s transportation and other associated costs can be claimed from the municipal council. This cannot exceed DKK 663 per year. Further details can be found in §§96 and 97 of the Consolidation Act on Social Services.
There are no tax refunds, benefits, payments or reductions for people with dementia. However, elderly people are entitled to reduced fares on public transport at certain times of the day e.g. not during rush hours.
Work/tax related support for carers and carer allowances
Paid leave to care for a person with dementia
According to chapter 22 of the Consolidation Act on Social Services carers are entitled to up to 6 months’ leave to care for a close relative/person who is handicapped or suffering from a serious disease. During these months (which can be divided into two periods of 3 months), the carer is actually employed by the municipal council. He/she signs a contract and receives a fixed salary (currently DKK 16,556 per month with a small deduction for a pension scheme contribution).
Chapter 23 of the Consolidation Act on Social Services deals with the care of terminal patients who wish to die at home and for whom hospital treatment has been assumed to be futile on medical grounds and therefore not necessary. The terminally ill person must agree to the establishment of a “constant care relationship” whereby a close relative/person provides care. An employer paying a salary to an employee during his/her absence from work in connection with caring for a closely connected person, thereby ensuring that the employee suffers no loss of earnings, is entitled to receive the amount otherwise payable to the employee by way of the constant care allowance. The constant care allowance amounts to 1.5 times the amount of sickness benefit that the carer would have been entitled to had he/she been ill. In other cases, (e.g. when the carer is not in paid employment), the carer may claim a constant care allowance of DKK 11,609 per month him/herself but not in addition to other welfare benefits. Where there are joint carers, the allowance can be divided between them according the percentage of care that each provides. The constant care allowance ends 14 days after the death of the terminally ill person. Temporary admission to hospital does not affect the constant care allowance but the impossibility to continue care at home does.
Unpaid leave to care for a person with dementia
Arrangements for unpaid time off work to care for people with dementia are dependent on agreements with employers and collective labour market agreements (which may vary depending on the sector of professional activity).
Carers are not entitled to flexible working hours or free/subsidised pension contributions from the State. The only benefit they receive from the State is that linked to paid leave (which cannot exceed 6 months) or the constant care allowance for care of a terminally ill person.
Unless otherwise stated, information provided by Merete Jensen (Danish Alzheimer Society) in July 2007
- Consolidation Act on Social Services of 18 January 2007: http://eng.social.dk/Legislation.html (in English)
- Ministry of the Interior and Health and the Ministry of Social Affairs (2005), Report on health and long-term care in Denmark: http://eng.social.dk/index.aspx?id=6c69ba60-5ac5-49c7-bda8-c719fcaf5230
Last Updated: mercredi 15 juillet 2009