Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Belgium
The Belgian health care system is based on a Bismarckian model with 99% of the population paying obligatory social insurance contributions. It is estimated that 60% of people with Alzheimer’s disease are cared for at home and 40% in institutions. Belgium is made up of 3 regions and available support, prices and regulations vary considerably from one region to the next. Most of the information in this report is based on the Walloon region and cannot therefore be considered truly representative of the whole of Belgium.
The organisation of social support for people with dementia and carers
The Ministry of Public Health is responsible for social support to people with dementia on a federal, regional and community level. There is a federal minister, regional ministers and communal ministers i.e. 11 ministers in charge of this issue.
However, in the Flemish region there is a long-term care insurance (LTCI) whereas in Wallonia there is not. The LTCI is obligatory in Flanders and optional in Brussels. It costs EUR 25 per year and entitles people at home to a payment of EUR 90 per month and people living in an institution to a payment of EUR 125 per month provided that they fulfil the necessary criteria for payment. (Declercq and Van Audenhove, 2004). The LTCI covers extra non-medical expenses once a person has reached a certain level of dependency in terms of home care or is in a nursing home. From January 2008, the payment will rise to EUR 118 for home care and EUR 125 for people living in nursing homes (De Lepeleire, 2007).
There is no specific system for people with dementia. They are covered by the general social security system.
The overall funding of social support for people with dementia and carers
The Belgian social security system covers illness, maternity, invalidity, old age, unemployment, work-related illnesses and family allowances. It also covers the cost of diagnosing dementia. There are no special measures specifically designed for people with dementia.
The system operates on the basis of obligatory contributions from employers and employees. The National Organisation for Social Security distributes the money amongst the different branches.
Treatment by anticholinesterase inhibitors and Memantine is refunded subject to the fulfillment of certain criteria set by the INAMI. Bi-therapy is not permitted. Hospitalisation is covered by the social security system.
The State partly contributes toward the cost of:
- accommodation in care and rest homes depending on the degree of dependency of the person concerned.
- home care depending on the level of dependency of the person concerned and on his/her revenue.
Activities and service are offered freely by the Ligue Nationale Alzheimer Liga to people with dementia and their carers. The State provides subsidies, material aid and employment incentives to Alzheimer associations.
The legal framework surrounding the provision of social support
According to the Belgian Constitution (article 23):
Everyone has the right to live a life in accordance with human dignity. These rights include: (….) 2) the right to social security, to protection of his/her health and to social, medical and legal assistance (unofficial translation).
Law of 7 January 2002 (art. 2) on public centres for social action (M.B. 05.08.1976, p.9876; err. : M.B. 26.11.1976, p.15027)
Law of 27 February 1987 relating to allowances for handicapped people (M.B. 01.04.87; erratum: M.B. 06.08.87)
- Royal decree of 6 July 1987 relating to the allowance for the replacement of revenue and the integration allowance.
- Royal decree of 5 March 1990 relating to the allowance for elderly people
- Royal decree of 22 May 2003 relating to the procedure for the handling of documents for the allowances granted to handicapped people.
- Royal decree of 17 July 2006 implementing article 4, §2, of the Law of 27 February 1987 relating to the allowances for handicapped people.
- Ministerial order of 30 July 1987 fixing the categories and the guide for the evaluation of the degree of autonomy in connection with the test for the right to the integration allowance.
Law relating to the obligatory health care insurance and coordinated benefits of 14 July 1994
Law of 24 February 2003 concerning the modernisation of the management of social security
Law of 5 June 2002 relating to the maximum amount to be charged by the health care insurance and articles 40 to 46 of the Law Programme of 30 December 2005, edition 2, relating to the obligatory health care insurance and payments.
Law of 22 August 2002 relating to patients’ rights
In the Walloon region:
Decree of 5 June 1997 relating to rest homes, service homes and day care centres for elderly people resulting in the creation of the Wallonia Council for the Third Age, modified by the Decree of 6 February 2003.
Governmental order for the Walloon region of 22/05/2003 covering short-term stays in the Walloon region.
Governmental order for the Walloon region of 16 July 1998 governing the title of “aide familiale”
In the Flemish region
There are numerous laws and decrees for the Flemish speaking part of Belgium but unfortunately this information was not available in English.
There are currently no reforms underway.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Since 1982, Belgium has adapted its health and social welfare systems in order to ensure a continuity of care to people with dementia and dependent people. However, reforms are still necessary. Moreover, available support and conditions governing access to such support are not well known.
Certain care and rest homes accept people with dementia. Amongst these, certain care and rest homes have units specifically for “disorientated people”. However, available places are limited and there are long waiting lists. There are no home care services and assistance adapted to the specific needs of people with dementia. There are, however, a few pilot projects and private initiatives.
People living in rural areas
Assistance in rural areas is more difficult to access than in towns.
People with different types of dementia
There is no support targeted at people with different kinds of dementia.
People from ethnic minorities
There are no specific services or support for people with dementia and their carers from ethnic minorities.
Younger people with dementia
In the Flemish-speaking part of Belgium, there are support groups for people with dementia under the age of 65. Otherwise, there are no specific services for this sub-group.
Services and support for people with dementia and their carers
Types of care
There are general day care centres (centres d’accueil) and nursing day care centres (centres de soins de jour) in Belgium which are both partly funded by the State. Users have to pay between EUR 15 and EUR 20 per day. The State pays a fixed price of EUR 5 for nursing care in a general day care centre and EUR 28 for nursing care in a nursing day care centre. Although most have room for new clients, there are not enough centres. Moreover, they are not sufficiently used for two main reasons:
- Transport of people with dementia to and from the centres is not always provided .
- Centres are often located too far away from the home of the person with dementia
Respite care at home exists and is partly funded by the State.
Night care is also available in centres in the Walloon region for people with dementia or people who are disorientated. It was originally a three-year project, which started in 2003 and was jointly managed by the Ligue Alzheimer ASBL and the Walloon region. Now, places are available for evening or night care in 3 institutions in Wallonia.
Short-term residential respite care exists but is insufficient. Since 2003, 117 rest/care homes (maisons de repos et soins known as MRSs) in the Walloon region have been authorised to have beds for short stays. These beds will gradually become available. Certain health insurance companies also offer their clients the possibility of short stays (either in an MRS of their choice or in pre-determined homes). Since 2005, places in short-term residential care have also been available in the Flemish and German-speaking communities. Service users have to pay about EUR 33 per day and the institutions also receive a fixed amount and regional subsidies from the State.
Long-term residential care
Long-term residential respite care is also available. There are no institutions just for people with dementia but some MRSs accept people with dementia. Some have a special wing just for “disorientated people.” However, most of these establishments have long waiting lists for people with dementia. In 2004, the average cost of long-term residential care in Belgium was EUR 12,264 p.a. (EUR 20,000 with charges included), to be paid by service users. The rest home or care home receives a further annual fixed payment from the State amounting to EUR 30 to EUR 45 per day depending on the level of dependence of its residents (as measured on the Katz scale).
Palliative care has been available in Belgium since the 1990s and is partly funded by the State. In 1991, limited funds were made available for palliative care at home and in centres. This was used to develop services but the number of services available remains insufficient and little known about. Very few people with dementia receive palliative care.
Monitoring in the home via alarm systems
Tele-alarm systems exist. Their price varies from one commune to the next, but they cost on average EUR 25 per month. It is possible to apply to health insurance companies for financial assistance.
Personal assistance and home help
Home care services (including personal assistance and home help) are not specifically designed for people with dementia but there is nevertheless a variety of services available. Paramedical services are provided by nurses, physiotherapists and speech therapists who are paid by the health care insurances for the services they provide according to the duration and type of disease. They are registered with the INAMI. This is a service which coordinates the provision of home care and home help and organises necessary assistance on the basis of an assessment of needs. This service is free.
Non-medical assistance with personal hygiene is provided by family and sanitary assistants (“aides familiales et sanitaires”). In the Walloon region, the “aides familiales” are registered. Some services are completely financed by the State, others only partly, but the service user’s contribution is adapted to his/her income (usually between EUR 0.87 and EUR 7.81 per hour). This service is considered satisfactory.
There is no specific service providing assistance with eating and drinking but assistance can be negotiated with the coordination service for home help. The price is calculated according to each person’s income and the State may contribute towards the cost.
Assistance with mobility is available and partly funded by the State but it is insufficient. It is provided in the framework of services provided by family and sanitary assistants but the assistance is not specifically for people with dementia.
Companionship/social activities are also provided within this framework subject to negotiation with the coordination services. In addition, there are Alzheimer cafés. The aim of these cafés is to have a place where people with dementia, their carers and people interested in dementia can get together, exchange information and give each other support.
Ergotherapy is available and partly funded by the State but it is insufficient as it is not yet well developed and consequently, not many people know about it.
Home adaptations are partly funded by the State.
There are no services providing assistance with incontinence, skin care or assistive devices.
Family and sanitary assistants and/or home help assistants provide assistance with housework. This service is partly funded by the State. Assistance with shopping, laundry and transport services are also available and partly funded by the State. All these services are considered sufficient. Transport services are not only provided by the State but also by health insurance companies and volunteers. Home help assistants who are registered in the Walloon region receive a fixed payment of EUR 5.21 per hour.
Meals-on-wheels are provided by the Centre Publique d’Action Social (the cost is adapted to each person’s income) or by caterers (the cost varies). Alternatively, family and sanitary assistants may help with the preparation of meals.
Additional services (e.g. hairdressing and chiropody) are available. The price varies.
Psychosocial support and training for people with dementia and carers
Information and counselling
La Ligue Alzheimer provides information about dementia and available support. It receives subsidies from the State but also has revenue from private donations, services and profits from sales. It functions on the basis of volunteers but in keeping with the development of the association, it now also has professional support.
Counselling for people with dementia is provided in the context of the Alzheimer cafés. The number of these cafés in Wallonia and Brussels is steadily increasing. The aim of the cafés is to inform people about the medical and psychosocial aspects of dementia in an informal manner. The cafés also help break social isolation and encourage social interaction. Meetings start with an informal discussion which is followed by a presentation of a pre-determined theme. Then there is a question and answer session. The cafés are partly financed by the State and will be evenly distributed throughout Belgium in the not too distant future. In the Flemish part of Belgium there are “dementia expertise centres”.
The Ligue Alzheimer has a 24 hour telephone helpline (0800/15 225) which is a confidential service operated by former carers and professionals. Operators are non-judgemental, available and empathetic and try to respond to enquiries in the best possible way.
At the request of families or other interested parties, the Ligue Alzheimer organises individual or family meetings. This type of meeting provides a more personal approach to understanding the problems encountered and to better understand the life of the person with dementia and the social and family context. Fears and expectations can be addressed more effectively as visual contact often facilitates communication.
Support groups for informal carers and professional carers are often organised by The Ligue Alzheimer. They are partly funded by the State and will soon be available throughout the whole country. These meetings usually focus on a particular theme which is selected in advance. They tend to be informal and the group facilitators encourage an exchange of ideas and tips designed to help carers and professionals to help themselves and each other to manage the difficulties they encounter in their daily lives with the person with dementia.
“Community care centres” exist in the Flemish part of Belgium, which provide a meeting place for people over 55 and those in need of home care. The idea is to provide information, prevent isolation and make professional care more accessible (Declercq and Van Audenhove, 2004).
There are no services to provide holidays for people with dementia but holidays for carers are privately organised and are partly subsidized by the State.
Carers may benefit from training through the “Cercle de Soins” which is in constant development in Brussels and the rest of Belgium and, and will soon be available throughout the whole of the country. It is partly financed by the State. This training programme is made up of 6 modules spread over 1 year. The aim of the training is to provide support to carers looking after a person with dementia with a particular emphasis on maintaining the person with dementia at home for as long as possible. The Ligue Alzheimer also organises conferences, destined for the general public, on dementia, its consequences and available support.
Work/tax related support for people with dementia
Allowances for people with dementia
Dementia is not an officially recognised pathology in Belgium but people with dementia can benefit from allowances for handicapped people. There are three such allowances.
Allowance for the replacement of revenue
The allowance for the replacement of revenue is granted to handicapped people between 21 and 65 years of age whose physical and mental state has reduced their earning capacity by a third or less than what a person could earn in a particular profession in the general employment market. The maximum amounts received per annum (depending on which category a person is in) are as follows:
- Category A: €5,261.63
- Category B: €7,892.45
- Category C: €10,523.26
(Direction Générale Personnes Handicapés, 2007)
The integration allowance is granted to handicapped people between 21 and 65 years of age who, due to their reduced autonomy, incur extra costs. Requests for this allowance must be addressed to the mayor of the commune where the person is on the population register or on the register of foreign residents. The maximum amounts received per annum (depending on which category a person is in) are as follows:
- Category I: €1,006.06
- Category II: €3,407.81
- Category III: €5,445.26
- Category IV: €7,933.06
- Category V: €8,999.56
(Direction Générale Personnes Handicapés, 2007)
Allowance for elderly people
The allowance for elderly people is granted to handicapped people aged 65 or over who have extra costs due to their reduced autonomy.
The maximum amounts received per annum (depending on which category a person is in) are as follows:
- Category I: €854.61
- Category II: €3,262.24
- Category III: €3,966.36
- Category IV: €4,670.27
- Category V: €5.736.77
(Direction Générale Personnes Handicapés, 2007)
These three allowances are calculated on the basis of the revenue of the handicapped person as well as that of his/her partner. Certain reductions are nevertheless applied with regard to these revenues. To qualify for these allowances, a person must be aged between 21 and 65 (for the first two allowances) or 65 or over for the allowance for elderly people, be resident in Belgium and actually be living in Belgium. He/she must also have one of the nationalities mentioned in the law.
Other benefits or protective measures
There are no legal measures to protect the rights of people with dementia who are still in paid employment. People with dementia are not entitled to tax refunds, benefits or direct payments to pay for services, for employing a person to provide home care services or for necessary home adaptations.
The Law of 27 February 1987 relating to allowances for handicapped people grants reductions on telephone charges, gas and electricity bills, and public transport as well as free radio and television licences for handicapped people with sufficient points on the dependency scale.
Work/tax related support for carers and carer allowances
Leave granted to carers
Leave to care for a seriously ill person
There are two forms of leave designed to help people care for a sick or dying person. The first is the “congé pour maladie grave d’un proche”. This allows people to completely or partly give up their paid work to assist or care for a member of their household or family up to the second-degree who is suffering from a serious illness for a certain period of time. Serious illnesses include those illnesses or medical interventions which are considered by the doctor in charge of the patient as necessitating any form of social, family, mental or moral assistance for the patient’s convalescence. There are two possibilities:
- A part-time or full-time employee can totally suspend his/her work for up to 12 months per patient.
- A person working full-time or at least ¾ time can reduce his/her working hours by 1/5 or ½ during a period of 24 months per patient.
In both cases, each period of leave taken must be of at least 1 month and no more than 3 months. Employees must request such leave 7 days in advance of the requested starting date. The relevant royal decrees are of 10/08/1998, 07/05/1999, 12/08/1991 and 10/06/2002.
The allowances granted for such leave are as follows (index linked as of 1 October 2006):
Table 1: Allowances granted for leave to take care of a seriously ill person
Type of leave/reduction of hours
Complete leave for full-time workers
Complete leave for part-time workers
EUR 684.94 paid on a pro rata basis
For a reduction of 50% of working hours
EUR 342.46 (if under 50 years old)
EUR 580.90 (if over 50 years old)
For a reduction of 20% of working hours
EUR 116.18 (if under 50 years old)
EUR 232.36 (if over 50 years old)
Source: Service Public Fédéral, Emploi, Travail et Concertation Sociale (2007)
Palliative care leave
The second form of leave is “congé pour soins palliatifs”. This allows people to partly or completely give up their work for a specific period of time in order to provide palliative care to a person who has an incurable illness. This person does not necessarily have to be a member of the family. Palliative care is considered as including any form of assistance (medical, social, administrative or psychological) and care given to a person with an incurable illness who is in the terminal phase of that illness. The relevant royal decrees are of 02/01/1991, 07/05/1999, 12/08/1991 and 10/06/2002. There are two possibilities:
- A part-time or full-time employee can totally suspend his/her work for one month per patient. This can be extended once by a further one month’s leave.
- A person working full-time or at least ¾ time can reduce his/her working hours by 1/5 or ½ for a period of one month per patient.
The period of leave may commence on the first day of the week following the week in which the employer receives a medical certificate from the employee. This medical certificate must have been provided by the doctor of the person in need of palliative care and must state that the employee has agreed to provide such care. The identity of the person in need of palliative care must not be revealed.
The allowance for palliative care leave is exactly the same as that for leave to care for a seriously ill person. Please refer to the table above for details.
Carers are not otherwise entitled to flexible working hours, free or subsidised pension contributions from the State or any form of payment for the care they provide.
- Unless otherwise stated, information provided by Sabine Henry (Ligue Nationale Alzheimer Liga) with the assistance of Dr. Michel Ylieff and Slyvie Loneux in May 2007
- Declercq, A. and Van Audenhove, C. (2004), National Background Report for Belgium, EUROFAMCARE, http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/nabare_belgium_rc1_a4.pdf
- De Lepeleire, J. (2007), information provided by email on 13 May 2007
- Direction Générale Personnes Handicapés (2007): website containing various information on allowances for handicapped people: http://handicap.fgov.be/
- Service Public Fédéral, Emploi, Travail et Concertation Sociale (2007), Congé pour maladie grave d'un membre du ménage ou de la famille, http://www.emploi.belgique.be/defaultTab.aspx?id=555
- Service Public Fédéral, Emploi, Travail et Concertation Sociale (2007), Congé pour soins palliatifs, http://www.emploi.belgique.be/defaultTab.aspx?id=548
 The information in this report on social support for people with dementia and their carers in Belgium was provided by Sabine Henry and Sylvie Loneux from La Ligue Alzheimer and Dr. Michel Ylieff.
Last Updated: mardi 22 septembre 2009