Social support systems
Organisation and financing of social support to people with dementia and carers
The organisation of social support for people with dementia and carers
Since the new government took office in May 2007, social protection has been split between two Ministries and a Secretary of State:
- The Ministry of Health, Youth and Sports
- The Ministry of Labour, Social Relations and Solidarity
- The Secretary of State for Solidarity
Three central State services ensure the coordination and planning of the social protection policy:
- the General Direction of Health ( Direction Générale de la Santé ), pilot of health policy
- the Direction of Hospitals and Healthcare Organisation ( Direction de l’Hospitalisation et de l’Organisation des Soins ), coordinator of the organisation and funding of hospitals and healthcare
- the General Direction of Social Action ( Direction Générale de l’Action Sociale ), coordinator of the social policy, including dependence and dementia care
Regional and local State services for Health and Social Affairs ( Directions Régionales et départementale des Affaires Sanitaires et Sociales ) implement national policies, and define and coordinate action at their levels. Regional Hospital Agencies ( Agences Régionales de l’Hospitalisation ) are in charge of the regional policy for healthcare institutions.
The new government is currently reviewing a new scheme to merge health and social care at a regional level.
Local governments at the departmental level (Conseil Général) enact legal departmental schemes for the elderly and act as trustees for long-term care institutions. They operate “departmental offices for impaired persons” (Maisons départementales du handicap), offering at local government level a single office for information, counselling and access to legal benefits for the impaired. It is foreseen that this will be extended to the elderly.
Communities (Communes) coordinate, organise and fund social action in their territory through the local Social Centres (Centre Communal d' Action Sociale).
Government policy for people with dementia
Two national plans for people with dementia were implemented in 2001 and 2004, the aims of which were to:
- recognise dementia as a health priority
- adapt services to respond better to the needs of people with dementia and their carers
- facilitate early diagnosis and care
- improve home care
- adapt care homes to take specificities of dementia care into account
- develop professional education
- consider people with early onset dementia
- develop studies and clinical research
In 2007, dementia was declared a “great national cause”. A large public awareness campaign has been funded by the State and the new government has announced a third Alzheimer plan (currently under construction) to be implemented in January 2008.
The overall funding of social support for people with dementia and carers
Funding is split between local governments (Conseils généraux), the national office of solidarity for autonomy (CNSA), the health insurance, the state, mutual and private insurances, pension institutions, communities and users. There is no specific funding for dementia care. Financial compensation for people with dementia is awarded under the general procedures concerning the dependent elderly.
Healthcare expenditure (medical or nursing visits and procedures, medicines, biological examinations, physical therapy, medical devices, transportation) are financed by the national health insurance (77% of expenditure), the state (1.4%), mutual insurance (7.4%), private insurance companies (3.2%), pension institutions (2.4%) and households (8.6%) (DREES, comptes nationaux de la santé en 2006, sept 2007).
Social care for the dependent elderly
Social care personnel costs, including housing, are mainly financed by the health insurance (40%), local governments ( conseils généraux: 18%), the national office of solidarity for autonomy ( CNSA : 10%) and users (33%). Personnel costs account for 85% of long-term-care costs (Centre d’analyse stratégique, 2007). Other social support may be provided at the local level by communities.
Elderly dependent people are entitled to public monetary benefits, either at home or in an institution. People must be at least 60 years old. Their level of dependence is assessed using a national scale ( AGGIR - acronym for Autonomie, Gérontologie, Groupe Iso Ressource)
- Group GIR 1 comprises elderly people confined to a bed or armchair, with severely altered mental functions, needing essential and continuous presence of caregivers.
- Group GIR 2 concerns elderly people confined to a bed or armchair, with intellectual functions not totally altered, in need of care for most activities of daily living. This group also comprises ageing people with altered mental functions but still able to move.
- Group GIR 3 comprises elderly people with preserved mental autonomy, partially able to move, but needing assistance every day and several times a day for body care.
- Group GIR 4 concerns elderly people unable by themselves to stand up, lie down or sit, but who are able to move around their place when standing, sometimes requiring help for toilet and to get dressed. This group also concerns people with no locomotion problems but requiring help for body activities and meals.
- Group GIR 5 concerns elderly people only needing specific assistance for toilet, meal preparation and cleaning.
- Group GIR 6 concerns elderly people who have not lost their autonomy for essential activities of daily living.
The public allowance for autonomy APA (allocation personnalisée d’autonomie) , set up in January 2002, allows partial funding for human assistance, technical assistance and specific housing installations for dependent people. It is granted only to people over 60 years old, belonging to groups GIR 1 to GIR 4, after individual medical and social assessment. Autonomy allowance tariffs are fixed by the Ministry of Labour, Social relations and Solidarity for both home assistance and institutional care. Allowance allocation is managed by local governments (Conseil Généraux). The allowance is granted upon first application for 76% of people asking for home assistance and 90% of people seeking institutional care.
A total of 1,008,000 people were benefiting from a public autonomy allowance in December 2006, of whom 60% were living at home and 40% in institutions. For dependent people living at home, 3% were assessed in GIR 1, 19% in GIR 2, 22% in GIR 3 and 56% in GIR 4. For dependent persons living in institutions, 15% were assessed in GIR 1, 43% in GIR 2, 17% in GIR 3 and 25% in GIR 4.
Maximum monthly allowances allocated to people belonging to the first 4 groups were respectively €1,189 (GIR 1); €1,019 (GIR 2); €764 (GIR 3); €509 (GIR 4) ( September 2007 figures ). The average allowance granted by local governments in 2006 was 26% below the national maximum amount set by the Ministry. The average monthly allowance for dependent people living at home was €490, rising with the level of dependence: €972 (GIR 1); €769 (GIR 2); €575 (GIR 3); €356 (GIR 4). Average monthly allowance for dependent people living in institutions was €406 (€484 for combined GIR 1 and 2; €299 for combined GIR 3 and 4).
Although there is no means testing for a dependent person to be entitled to the autonomy allowance (in accordance with equity principles), there is a co-payment based on the dependent person’s income (because of shrinking government finances). An assistance plan is proposed to the dependent person, mentioning the level of co-payment. The costs of individual assistance plans use reference costs based on local government tariffs.
For dependent people living at home there is no co-payment when the dependent person’s income is lower than €658 per month (which is the case for 28% of dependent people living at home). There is a progressive co-payment up to a monthly income of € 2,622 then a 90% co-payment above this threshold.
For dependent elderly people living at home, local governments paid in 2006 approximately 84% of individual assistance programmes (average cost €410 per month), with 16% co-payment from the dependent people.
For elderly people living at home (dependent or not), an additional allowance of €255 per month restricted by means testing can be obtained for those with an annual income of less than €7,635 for a single person and €13,374 for a household. Local government coverage for home help (household chores) does not exceed 60% of costs, users’ out-of-pocket expenses varying from council to council.
For dependent elderly people living in institutions, local governments covered only 68% of the dependence tariff (average €402 per month; €478 in GIR 1 or 2; €293 in GIR 3 or 4).
The legal framework surrounding the provision of social support
The French legal framework for long-term care is subdivided into three sets of legal measures:
- The organisation and financing of social care
- The organisation and financing of health care
- The legal protection of sick people
Major legal measures relative to social care
- Law of 20 July 2001, concerning financial support for the elderly with loss of autonomy, creating a new personalised autonomy allowance (APA-allocation personnalisée pour l’autonomie) (cf. II.2).
- Law of 2 January 2002, reforming social care, which involved an in-depth modification of the legal framework of institutions and services, providing flexibility and consistency to the system and defining the specificities and boundaries of the social care sector versus the health care sector.
- Law of 30 June 2004, concerning solidarity for the autonomy of elderly and impaired persons, creating the national office of solidarity for autonomy ( CNSA, Caisse nationale de solidarité pour l’autonomie) , to ensure solvency and secure long-term financing and territorial equity for long-term care.
- Law of 11 February 2005, concerning equality of rights and chances, involvement and citizenship of impaired persons, recognising the dependence of the elderly as a form of impairment.
- Decree of 19 December 2005, creating the “departmental office for impaired persons” ( Maison départementale du handicap) , offering at the local government level a single office for information, counselling and access to legal benefits for the impaired and the elderly.
- Decree of 8 March 2007 creating the national agency for assessment and quality of social care institutions.
Major legal measures relative to health care
- Law of 9 June 1999, providing legal access to and the development of palliative care.
- Law of 4 March 2002, concerning patients’ rights and the modernisation of the health care system, which introduces healthcare networks to coordinate professionals at health territory levels.
- Law of public health of 9 August 2004, defining national health objectives and indicators for major diseases, including dementia.
- Decree of 4 October 2004, recognising dementia as a chronic disease (affection de longue durée) , which allows 100% coverage by the national health insurance.
Major legal measures relative to sick persons
- Law of 4 March 2002, concerning patients’ rights and the modernisation of the health care system, which recognises :
- legal protection for healthcare system users (information, consent, medical files)
- legal value of health care proxy (personne de confiance)
- compensation related to medical responsibility
- Law of 22 April 2005, concerning patients’ rights and end-of-life, which :
- condemns “unreasonable obstinacy” in the pursuit of treatment or care
- requires a collegial procedure in case of restriction or withdrawal of treatment
- reinforces the role of the health care proxy through the collegial procedure
- recognises the legal value of advance directives
- Law of 5 March 2007, reforming mechanisms for the legal protection of vulnerable adults, which :
- creates a power of attorney for future protection (health and property issues)
- reaffirms the principles of necessity, subsidiary and proportionality
- reinforces a person’s rights (protection of home, assets…)
- simplifies and harmonises the three mechanisms for the legal protection of vulnerable adults (guardian, curator, trustee)
- Law of 18 January 2005 introduce a programme for social cohesion, promoting domiciliary labour.
- Law of 9 June 1999, providing legal access to and development of palliative care, allowing legal leave to support a family member in the last stage of a terminal illness. This measure has been replaced by another one (family solidarity leave) within the pension law of 21 August 2003.
- Law of 21 August 2003 reforming pensions, creating a family solidarity leave, allowing the carer to support a relative suffering from a life-threatening disease. This leave cannot exceed six months.
- Decree of 18 April 2007, concerning leave to support a member of the family with severe impairment or loss of autonomy, allowing the carer to take unpaid time off work for caring without losing his/her position. This leave cannot exceed 1 year over a lifetime employment period.
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Services within the social domain (i.e. home help, information, coordination and respite care) have been developed since the 1960s with a strong general emphasis on gerontology (older people with no specific pathology/disability). Consequently, specific skills for the evaluation and a more targeted response to the needs of people with dementia are not yet systematically part of the training of professional carers. Although some specific training courses are now being developed, they are still not systematically included in the initial state training of professionals in the social domain.
Medical or more “pathology related” services (e.g. day hospitals and psychosocial support for carers) are mainly provided by or in relation with the memory centres, which have developed a specific competence in dementia in the last ten years. However, they evolved mainly out of geriatric centres and have less emphasis on group support and psychological support to people with dementia etc. (i.e. no “psychiatric” or “mental health” culture). Developments in this area have therefore been slower.
The services provided by nursing homes for elderly dependent people (respite care, long term care and day care centres) are still very much orientated towards general gerontology, although psychologists and some of the other professionals involved are increasingly developing skills that are more targeted at people with dementia. There is no big framework or unified structuring of the basic skills needed which would include an emphasis on dementia specific topics but efforts are currently being made. Evidence of this can be seen in the emergence of special care units and in the awareness of the management within these units that there is a need for specific training in dementia for the staff working there. But there are still no unified in-training programmes.
Services and support for people with dementia and their carers
Types of care
Day care centres exist. In the 2007 national survey of FMA, 740 day care centres offering a total of 5,297 places specifically for people with dementia were identified. Some of these places are offered within larger groups of older dependent people who are not cognitively impaired, whereas some are specifically for groups of people with dementia. Some local Alzheimer associations have set up day care centres of their own.
Day care is partly financed by the state and partly by service users. The amount of the state allowance for dependent people (the “APA”) depends on income. The maximum amount of APA is €1,200 per month for the level “most dependent GIR 1” or €670 a month if the person’s income is less. The state charges the full cost if the person has a higher income. The personal contribution goes from 10 to 90% if the income is €2,700 or above).
Respite care in the home (during the day or at night) is theoretically available, but in practice, it is very expensive. Night care services (where a person stays only for a limited time) are developing slowly. To-date, there are only about 50 out of the 5,000 home care services available via the APA. Some are developing services specifically targeted at people with dementia. The service is funded through the APA.
Short-term residential respite care (not more than 3 days) is available but is not considered sufficient for two main reasons. Firstly, the APA covers the general expenses for day care and home help services but not, in practice, other services. Secondly, the offer is still far behind the macro-demand. It is estimated that there are about 50 structures offering such services specifically for people with dementia, and some 100 to 200 others offering the services to elderly people in general. This type of offer comes out of home care services, day care centres or nursing homes (the latter offering mostly non dementia-specific respite care).
Long-term respite care (for 10 days or more to allow the carer to have a break) is available and is partly funded by the state and partly by service users (on the same basis as for day care).
Long-term residential care
Long-term residential care is available. Out-of-pocket expenses for long-term housing in an institution amount to about €1,500 per month. Part of this is financed by the dependent person’s income (average net pension in 2004: €1,503 per month for men and €938 per month for women). Public social assistance for housing ( aide sociale à l’hébergement , provided by the State or local governments) is offered to people who cannot afford to pay the full cost of long-term care housing. This assistance is not free and is recovered by the public authorities from the deceased person’s estate. 24% of people in residential home care receive public social assistance for long-term care housing.
There are services offering palliative care at home which are partly funded by the state. Hospital and mobile palliative care teams, as well as a huge network of volunteer palliative care associations, have developed in the last ten years, but the approach is general and the professionals and volunteers rarely have the necessary dementia-specific skills. The National Health Authority is currently running a project to develop a framework for palliative care in dementia within the next few years.
Less than ten home care services are now offering a specific palliative care approach for people with dementia living at home. This might develop in the future due to competition amongst service providers and the need to develop specific market profiles for services provided in people’s own homes.
Almost every local hospital now has a palliative care unit or a mobile team in its network. But even in these units and teams, dementia is not well known. Pain management and support to carers is quite good, but other aspects of support to the person with dementia (such as non verbal communication and measures to enhance quality of life) are less developed. Palliative care in centres/hospitals is partly funded by the state and partly by service users. Pain management is financed by the health insurance and the other forms of care are often delegated to volunteers.
Monitoring in the home via alarm systems
Tele-alarm systems are available and can be partly reimbursed through the APA, but in practice there is very little demand for this.
Personal assistance and home help
Most home help services propose a combination of assistance with personal hygiene and home help. In practice, they also supervise the taking of medication although this should actually be done by nursing services. A survey carried out by Fondation Médéric Alzheimer in 2005 revealed that (all conditions combined), 76,000 people received assistance/supervision taking medication from community nursing services.
The home help services provide assistance with eating and drinking and with mobility i.e. lifting, moving and walking.
Assistance dealing with incontinence is available but this is only in the form of continence pads which are reimbursed by the APA. Education or training to help prevent or manage incontinence is not available. The community nursing services provide assistance dealing with pressure sores.
Companionship and social activities are provided by associations, as part of home help services and by some professionals even though most have no specific training in dementia.
Assistive devices are available on the same basis as the tele-alarm systems mentioned in the previous sub-section.
The above-mentioned personal assistance services are partly funded by the state through the APA and partly by services users. Please refer to the section on the funding of social support for more information.
Some local coordinations have a network which includes an ergotherapist and a preventive home visit as part of their preventative strategy. Most have no ergotherapist and home visits are only made to people who have recently had an operation and were hospitalised, in which case the ergotherapist of the hospital would make the visit. Unlike the above-mentioned services, ergotherapy is completely funded by the state.
Home adaptations/transformations, like ergotherapy, are not systematically available and they can be expensive. When available, they are partly funded by the state and partly by service users.
The following services are available and are partly financed by the state through the APA:
- Assistance with housework e.g. cleaning, dusting and tidying
- Help with the preparation of meals (including meals-on-wheels)
- Assistance with shopping
- Transportation service
- Assistance with laundry
Preparation as well as help with eating is mainly provided by the home care services. Education or training by professionals on how to encourage eating in dementia is rare. Concerning shopping, home help services sometimes have social assistants who go shopping but this offer is not systematic. Transportation is a big problem as only 30% of days care centres have a transportation service. Assistance with laundry is mostly provided by home care services within the APA package.
Psychosocial support and training for people with dementia and carers
Five years ago, information and coordination centres for the elderly were set up but they were not specifically for people with dementia. The authorities intend to stick to general centres for the elderly but some have nevertheless developed centres just for dementia. According to a survey carried out by FMA in 2007, there are now 15 centres specifically for people with dementia out of 867. These information and coordination centres are completely funded by the state. Alzheimer associations also provide information about dementia, mainly to carers.
Counselling for people with dementia and carers
Counselling for people with dementia is very scarce. FMA’s 2007 survey revealed that 242 organisations offered support groups for people with dementia. 11 of these were Alzheimer associations; most were day care centres or memory clinics. Individual psychological support for carers is offered by two thirds of memory clinics as well as at day care centres, by Alzheimer associations and by gerontological information services. Altogether, the FMA survey recorded 736 organisations offering individual psychological support and 550 organisations offering support groups for carers. Counselling for carers and people with dementia is partly funded by the state and partly by service users.
Holidays for people with dementia and carers
According to the FMA 2007 survey, only 52 organisations offered holidays for people with dementia on their own, of which 11 were Alzheimer associations. A further 19 offered weekend breaks. 47 offered holidays for people with dementia and carers together, and 25 offered weekend breaks for both. In some cases, the state contributes towards the cost of such holidays but sometimes service users have to cover the full cost.
Training for carers
Training is provided by several organisations (e.g. memory centres, Alzheimer associations, information services and day care centres). Training courses tend to be heterogeneous and do not always reflect the latest developments which have been proven effective.
Work/tax related support for people with dementia
People with dementia are entitled to benefits on the basis of their incapacity and do not have to pay tax for the employment of a person to provide care at home. They may be entitled to benefits or grants for home adaptations and to certain reductions on radio and television licences and on public transport.
Work/tax related support for carers and carer allowances
Time off work and flexible working
Paid leave to care for a terminally ill person
The Law of 21 August 2003 reforming pensions introduced a family solidarity leave. Article L. 225-15 states that any employee who has a relative or person living in his/her home suffering from a terminal illness can benefit from family solidarity leave according to the conditions defined by decree. Leave can be taken for three months with the possibility of extending this for a further three months maximum. Employees should apply by registered mail with recorded delivery to their employer two weeks before the required start of leave requesting family solidarity leave. The request should be accompanied by a medical certificate in which it is stated that the terminally ill person does indeed have a terminal illness. In case of emergency, confirmed by a doctor, the leave can start as soon as the employer receives the letter.
Leave ends at the end of this period or if the terminally ill person dies before this time, three days after his/her death. The employee should try to inform the employer of his/her return to work three days in advance.
Unpaid leave to care for a person with severe impairment or loss of autonomy
The Decree of 18 April 2007, concerning leave to support a member of the family with severe impairment or loss of autonomy allows an employee to take unpaid time off work to care without losing his/her job. This leave is for 3 months and can be renewed. It cannot, however, exceed 1 year of the employee’s lifetime period of employment.
The application must be made two months in advance of the required starting date of leave. This can be shorted to 2 weeks in case of emergency or 1 month for each successive renewal. The application must contain proof of the relationship to the person in need of assistance as well as evidence of the seriousness of the handicap or loss of autonomy.
People taking unpaid leave of this kind can also apply for subsidised pension contributions.
The information in this report on social support for people with dementia and their carers in France was provided by the Fondation Médéric Alzheimer.
Last Updated: mercredi 15 juillet 2009