Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Luxembourg
In 1991, a Consultative Commission was set up to look into the possibility of creating a dependency insurance scheme. Users, carers and voluntary as well as private organisations were all invited to participate in the consultation which eventually led to the introduction of a long-term care insurance (LTCI) in 1999, known in Luxembourg as the “assurance dépendance” or “Plegeversicherung”. This was part of the government’s dual policy to support elderly and disabled people in their own homes for as long as possible whilst at the same time developing user-oriented care strategies.
Between 1998 and 2003, 17,933 requests for assistance were registered by the Ministry of Social Security. Of these, 83.2% were from people over 70 and of the accepted applications, 62.6% were from people in need of home care (Ferring and Weber, 2005).
The organisation of social support for people with dementia and carers
The long-term care insurance
Luxembourg’s long-term care insurance (LTCI) came into force in January 1999. It covers the long-term care needs for people who need considerable and regular assistance from another person for essential acts of daily living (ADLs). These acts include:
- personal hygiene: washing, oral hygiene, care of skin, hair and nails, and going to the toilet;
- nutrition: preparation of food adapted to the person’s needs and assistance eating it.
- mobility: assistance moving, comfortable positioning in a bed or chair, getting dressed and undressed, moving about within the home, sitting up, getting up and down stairs, going out and returning home.
Assistance includes carrying out all or part of the above-mentioned tasks on behalf of the person, or supervising/supporting the person so as to enable him/her to carry out the task autonomously. Once deemed eligible for services on the basis of required assistance with essential ADLs, a wider range of services is available. The LTCI also applies to people with dependency in residential care but in this report we will concentrate on provisions for people with dementia still living at home.
The minimum requirement for essential ADLs is at least 3 ½ hours per week for at least 6 months. A person’s needs are evaluated by the “Cellule d’évaluation et d’orientation” (CEO) which then draws up a care plan on the basis of those evaluated needs. The CEO is a multidisciplinary team under the authority of the Ministry of Social Security. The final decision concerning entitlement to services and the amount of services to be provided is taken by the Union of Sickness Funds (“ Union des caisses de maladie ”) based on information about the assessment carried out by the CEO. The Union of Sickness Funds is responsible for:
- the individual classification of dependency, as well as the attribution, reduction and suppression of the different benefits and services;
- the payment of nursing services, the elaboration of nursing contracts and the negotiation of the monetary value of nursing services;
- negotiation with service providers concerning the provision of nursing aids (Ferring and Weber, 2005).
Services in kind and direct payments
Care can be provided by informal carers (including relatives and partners) or by professionals. However, the CEO can modify the care plan (and in particular the amount of care provided by informal carers) if it feels that this would be in the best interests of the person with the care needs.
Assistance with essential ADLs cannot exceed 24 ½ hours per week or 38 ½ in exceptional cases (approved by the CEO). Services are provided “in kind” by professional carers. The limit of 24 ½ hours per week or 38 ½ for services (provided in kind) can be increased by 2 ½ and 4 hours respectively for household tasks (e.g. shopping, laundry, housework and the maintenance of essential equipment) if this is considered necessary by the CEO.
These services can be replaced by an allowance to purchase services from non-professional carers such as family and friends. However, this cannot exceed 7 hours per week. If a person has been assessed as being entitled to more than 7 hours’ care per week, an additional payment can be made for half of the extra hours’ care between 7 and 14 hours per week. For example, a person, who has been evaluated as needing 11 hours’ care per week, could receive a payment for 9 hours (i.e. 7 hours plus half of the extra 4 hours). If a person needs more than 14 hours’ care per week, the care must be provided completely by professional carers. Payments are tax free and transferred to a bank account every month.
In addition to services provided by informal carers and the established help networks, there are about 23 associations, registered with the Ministry of Family Affairs, which operate on a voluntary basis.
The overall funding of social support for people with dementia and carers
The LTCI is financed by people (whether they are Luxembourg residents or simply commuters from the surrounding countries) who contribute to the Luxembourg healthcare insurance. For the monthly contribution, each person pays 1.4% of his/her total gross income (less a quarter of the minimum social salary). For Luxembourg residents, investments, rental and other sources of income are also included in the calculation of annual contributions. The State also contributes towards the LTCI which is, in addition, partly financed by a tax on energy.
The price per hour of service (provided by professional carers) is EUR 52.44. Cash payments for informal carers (of half the amount paid to professionals) are granted up to a maximum of EUR 262.50 per month.
The payment of professional carers is weighted according to the qualifications of the carer. For example, a nursing aid has a coefficient of 1, a qualified nurse 1.3 and professionals such as psychologists and physiotherapists a higher coefficient. Unqualified domestic aids have a coefficient of 0.7 (Ferring and Weber, 2005).
People who need support but do not qualify for the LTCI as they need less than the minimum 3 ½ hours per week can still obtain services but must pay for them. They may be entitled to financial assistance towards the cost of the services but this is means tested (Ferring and Weber, 2005).
The legal framework surrounding the provision of social support
The Law of 19 June 1998 (“assurance dependence”) led to the introduction of the obligatory long-term care insurance on 1 January 1999.
Loi du 23 décembre 2005 modifiant différentes dispositions du Code des assurances sociales en matière d’assurance dépendance. This law deals with the modification of certain measures in the code of social insurance with regard to the long-term care insurance.
The Law of 28 August 1998 on Hospital Establishments grants patients suffering from an incurable and terminal illness the right to a dignified death by avoiding "acharnement thérapeutique  " and maintaining as far as possible the quality of life. It is stipulated that the doctor must assist the dying person right to the end and act in such a manner as to permit the patient to maintain his/her dignity. It is the doctor's duty to provide palliative care in order to help alleviate physical and psychological suffering. In addition, he/she must also provide the relatives of the patient with adequate assistance to relieve their suffering. Finally, as the patient approaches death, he/she has the right to be permanently accompanied by at least one person of his/her choice in conditions which permit his/her dignity to be respected.
The Grand-Ducal Decree of 5 November 1999 covers the financing of home adaptations.
The suitability of social support for people with dementia and carers
Information on the suitability of social support for people with dementia and their carers was unfortunately unavailable. This was also the case for services and support for people living in rural areas, people with different types of dementia, younger people with dementia and people from ethnic minorities.
Services and support for people with dementia and their carers
Types of care
The Association Luxembourg Alzheimer has 6 specialised day care centres for people with dementia in the following towns: Luxembourg (Bonnevoie and Dommeldange), Esch sur Alzette, Dahl, Berchem and Rumelange. The LTCI covers specialised day care. The CEO decides how many days per week of day care a person is entitled to under the LTCI. In rare cases, people with dementia are authorised to attend a day care centre 7 days a week. For this reason, the centre at Bonnevoie is open 7 days a week and there is another centre in the north of Luxembourg which opens on a Sunday if there is sufficient demand. The LTCI covers part of the cost of day care and the person attending the centre must pay EUR 21.53 per day in addition.
Hëllef Doheem has 7 psycho-geriatric day care centres.
Respite care at home is available in Luxembourg. This consists of a qualified person spending the day at the home of the person needing the service. Some also engage in activities designed to stimulate memory and improve mobility.
In Howald, a suburb of Luxembourg, there is a psycho-geriatric care home (Foyer Hesper Kopp) which provides night time care so as to give informal carers a break. It is run by Hëllef Doheem.
Every year, the person in need of care receives twice the amount of his/her LTCI allowance which can be used to finance a stand-in person for three weeks’ respite care. The three weeks do not have to be used all at once.
There are a number of establishments in Luxembourg offering long-term residential care. The nursing homes in Differdange, Echternach and Vianden have units for people with dementia. In January 2004, there were 49 institutions (34 integrated centres for the elderly) and 15 nursing homes with a capacity of 4,562 beds (Ferring and Weber, 2005).
Specialised palliative care teams provide global care to the person in need of palliative care and to his/her family. These teams operate a helpline and home visits 24 hours a day, 7 days a week throughout the whole of Luxembourg. Support can also be provided to families following the death of their loved ones.
“Omega 90” is an organisation which is financed by the Ministry of the Family and also through private donations. It is made up of several organisations (including Amiperas, Caritas, Croix-Rouge, Fondation Luxembourgeoise contre le Cancer, Hëllef Doheem and Doheem Versuergt) and has a helpline run by professionals. It also organises and trains volunteers who visit the dying and their families in hospitals and at home in order to provide company and support.
Monitoring in the home via alarm systems
The organisation “Hëllef Doheem” organises a 24 hour tele-alarm system known as “Secher Doheem”. This service is provided by means of a simple device which is linked to the person’s telephone combined with a bracelet or necklace which emits a signal. People with a monthly income exceeding EUR 1,581 must pay EUR 36.18 per month for the service plus EUR 94.12 for the installation. People with less than EUR 1,581 per month may be entitled to financial assistance from the commune in which they reside but the amount paid varies from one commune to the next (Service Télé-Alarm, 2007).
Personal assistance and home help
The following services are available in Luxembourg and covered by the LTCI:
- Assistance with personal hygiene (including brushing teeth, skin care , hair care, nail care and going to the toilet)
- Assistance with mobility
- Assistance with eating and drinking (including cutting up and mixing food)
The following services are available in Luxembourg and covered by the LTCI:
- Assistance with housework
- Assistance with shopping
- Assistance with laundry
- Assistance maintaining essential household equipment in order
The two biggest providers of home help services and personal assistance are Hëllef Doheem and HELP.
A meals-on-wheels service is operated throughout the whole country by various communes, cities and the Red Cross.
The CEO can authorise products that are necessary for assistance and care. For example, dependent people who are incontinent are entitled to a monthly payment of EUR 95.72 to pay for or contribute towards the cost of continence pads. This amount is index linked.
Home adaptations and assistive technology
Home adaptations may be authorised by the CEO if considered necessary to allow a person to maintain or increase his/her autonomy with regard to personal hygiene, the preparation of meals and mobility both in and out of the home. The amount paid is fixed by decree. In June 2007, the limit was EUR 26,000 (Ministry of Social Security, 2007). Unfortunately, the procedure for obtaining approval for a grant for home adaptation is quite lengthy. It can take up to two years.
It is also possible to obtain financial aid for extra costs incurred as a result of moving into accommodation that is more suited to a person’s degree of dependency. The maximum amount granted is EUR 300 per month and not more than EUR 26,000 in total.
Assistive devices may be authorised by the CEO to allow a person to maintain or increase his/her autonomy with regard to personal hygiene, nutrition and the preparation of meals, mobility both in and out of the home, getting dressed, domestic tasks, shopping and both verbal and written communication. In addition, assistive devices may be authorised for needs linked to security and the prevention and relief of pain. Assistive devices are usually provided on loan but if this is not possible, a grant may be provided so that the person can purchase the necessary equipment. The grant from the LTCI will not exceed EUR 26,000.
It is not necessary to need a minimum of 3 ½ hours’ care per week for essential ADLs to be eligible for a technical aid or a home adaptation. The need must, however, be justified and approved by the CEO. Both home adaptations and assistive devices may also be authorised to help carers ensure the provision of assistance and care.
A range of services, described as “support” are available under the LTCI. They include:
- Surveillance of the dependent person at home
- Helping the dependent person with administrative tasks e.g. official paperwork
- Excursions/social activities
- Individual or group support
The LTCI covers a maximum of 14 hours of support services per week.
Under the LTCI, advisory services are available but for a limited period of time. They include:
- Advice on essential ADLs
- Advice on the use of assistive technology
- Advice to carers and relatives
Psychosocial support and training for people with dementia and carers
The Association Alzheimer Luxembourg (ALA) has a round the clock telephone helpline. Hëllef Doheem also has a helpline providing information on its services, the long-term care insurance and potential measures to be taken to enable people to continue living at home (Ferring and Weber, 2005).
ALA organises self-help groups for carers. Sometimes, carers can come with the person with dementia who is looked after whilst they attend the meeting. These support groups are free of charge but carers are invited to make a voluntary contribution if they so wish. There has not been sufficient demand for support groups for people with dementia.
There are no organised holidays for people with dementia and/or carers with the LTCI system. However, as mentioned in the section on respite care, people with dementia receive an extra allowance to enable them to arrange for stand-in carer for up to three weeks per year and to give the informal carer a break.
Training sessions for informal carers are regularly organised and provided by ALA. Most courses are offered in Luxembourgish, but also in French if there is sufficient demand. These courses cost EUR 25 for 10 sessions.
Work/tax related support for people with dementia
Information on work/tax related support for people with dementia was unfortunately unavailable.
Work/tax related support for carers and carer allowances
On the basis of a declaration made by the dependent person, the LTCI pays the social contributions of the carer to the State pension (provided that he/she does not have a private pension). This payment covers the contribution of the employer and that of the insured person. The actual amount is calculated on the basis of the minimum monthly salary of an unskilled worker.
- Ferring, D. and Weber, G. (2005), National Background Report for Luxembourg , EUROFAMCARE. http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/ nabare_luxembourg_rc1_a4.pdf
- Hëllef Doheem official website: http://www.hellef-doheem.lu/services/presentation.htm (accessed on 15 June 2007)
- Ministry of Social Security (2007), Official website, http://mss.public.lu/dependance/ad_financement/index.html (accessed on 15 June 2007)
- Livre C du C.A.S – Assurance Dépendance (Loi du 19 juin 1998) : http://www.secu.lu/legis/legis/Legdep.html (French version of the long-term care insurance law)
- Loi du 23 décembre 2005 modifiant différentes dispositions du Code des assurances sociales en matière d’assurance dépendance : http://www.legilux.public.lu/leg/a/archives/2005/2152812/2152812.pdf
- Omega 90 official website: http://www.omega90.lu/omega90.lu/index.html (accessed on 18 June 2007)
- POSL (2001), L’assurance dépendance: guide de référence pour les habitants de la Ville de Luxembourg
- Rapport général sur la sécurité sociale au grand-duché de Luxembourg, 2001 : http://www.mss.public.lu/publications/rapport_general/rg2001/rg_2001.pdf
- Service Télé-Alarm (Merch, Luxembourg) : information provided by telephone on 18 June 2007
 This means the relentless pursuit of treatment even when there is no hope of recovery, cure or improvement.
Last Updated: mercredi 15 juillet 2009