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Regional patterns - France

Cost of dementia

by Paul-Ariel Kenigsberg, Fondation Médéric-Alzheimer

The French health- and social care environments of Alzheimer’s disease have evolved considerably during the 2003-2008 period. Caregivers associations took an active part in this evolution.

Public policy

Organisation and funding for health, social care, compensation for the dependent elderly and specific measures for Alzheimer’s disease are distinct and will be discussed in detail.

Organisation

Since the new government took office in May 2007, social protection is split between two Ministries (Ministry of Health, youth and sports; Ministry of Labour, social relations and solidarity) and Secretary of State for Solidarity.

At the national level, three central State services ensure coordination and planning of the social protection policy :

  • the General Direction of Health (DGS), pilot of health policy
  • the Direction of Hospitals and Healthcare Organisation (DHOS), coordinator of organisation and funding for hospitals and healthcare
  • the General Direction of Social Action, coordinator of the social policy, including dependence and dementia care

Policy planning and regulation for healthcare institutions is managed at a regional level, through regional schemes of health organisation. Regional Hospital Agencies, Regional State services for Health and Social Affairs implement national policies, define and coordinate actions at their levels.

Policy planning for social care institutions for the elderly is managed at a departmental level, through departemental gerontological schemes. Department State services for Health and Social Affairs implement national policies, define and coordinate actions at their levels. Local governments at the departmental level (Conseils généraux) act as trustees for long-term care institutions and warrant access to legal benefits for the elderly. Policy planning for the dependent elderly is further managed at an inter-departmental level.

A new scheme for merging health and social care at a regional level is currently under review by the government.

Social action is also organised and coordinated at a local level by communities.

Funding for healthcare services

Reimbursed health care expenditures for people diagnosed with Alzheimer’s disease and other dementias, recognised as a chronic illness, are 100% covered by the national health insurance system. In October 2004, Alzheimer’s disease and other dementias became a specific chronic illness (ALD 15), distinct from psychiatric disorders like psychosis, major personality disorder and mental retardation. This allows financial follow-up of reimbursed healthcare expenditures for community-living persons with dementia.

Some goods or services are not reimbursed by the health insurance system, like private psychological care or incontinence pads, which are supported by families.

Health insurance also supports partial reimbursement of families expenditures for respite care.

Recent data for reimbursed, direct health care expenses on large populations of people with dementia have recently been published by national health insurance bodies. These studies consider expenses incurred by community-living people and exclude both long-term care costs and informal care costs, which are supported by other payors.

Caisse nationale d’assurance maladie des travailleurs salariés (CNAMTS), the main French health insurer, follows up expenses related to people diagnosed with dementia and registered as chronically-ill patients (affections de longue durée) , tracing Alzheimer’s disease and other dementias under a specific code (ALD 15) (1,2). People registered under ALD 15 are entitled to 100% health expenses coverage. In December 2006, there were 198,319 people registered under ALD 15 in France, which means that only one quarter of the estimated 850,000 people with the disease get an administrative recognition of their diagnosis. In 2004, reimbursed expenses for people registered under ALD 15 were 8,453 €/patient/year, of which dementia-specific costs amounting to 5,943 €/patient/year. Expense distribution for Alzheimer’s disease and other dementias was the following : physician visits 363 €, drugs 1,236 €, biological examinations 83 €, hospital care 4,586 €, nursing care 1,148 €, physical therapy 331 €, transportation 173 €, medical devices 427 €, other expenses 107 €.

Compared to other chronic diseases, Alzheimer’s disease and other dementias (ALD 15) costs to health insurance are similar to those of malignant tumors (5,722 €/patient/year), chronic psychiatry care (5,953 €/ patient/year), Parkinson’s disease (6,156 €/patient/year) or stroke (6,162 €/patient/year) and much higher than costs of coronary disease (4,764 €/patient/year), diabetes (4,265 €/patient/year) or severe arterial hypertension (3,815 € patient/year).

Another study, by the Régime Social des Indépendants, a complementary health insurer (3), selected a population of dementia patients based on the prescription of Alzheimer’s disease-specific drugs (in France : donepezil, rivastigmine, galantamine, memantine). These drugs were prescribed for patients with the following diagnoses: Alzheimer’s disease 48%, other dementias 12.8%, other chronic diseases 26.1%; vascular brain diseases 2.3%, no chronic disease 10.7%. Reimbursed resource utilisation and costs were measured in 16,318 primary care patients. Average 2005 reimbursed expenses per patient and per year were respectively : Alzheimer’s disease-specific drugs 884 €; other drugs 912 €; physician visits 324 €; paramedical 1,251 €; biology 120 €; transportation 380 €; medical devices 442 €. For newly treated patients, median delay between diagnosis and treatment is less or equal to 3 months. Half of the patients (51.9%) were provided with the five biological examinations (hemogram, ionogram, glycemia, TSH, calcemia), imaging (MRI, scanner) and mini-mental state examination (MMSE) recommended by the Haute Autorité de santé (HAS), the French National Authority for Health. Almost all patients (91.6%) were evaluated with an MMSE, with a mean score of 20. Twenty-seven percent of patients were rapid decliners under treatment. Off-label use was observed in 22.1% of Alzheimer-specific drugs at treatment start and 8.4% after 2 years. Off-label prescription for memantine was found in 45% of initial prescriptions for patients at a mild stage of the disease, whereas cholinesterase inhibitors continue to be prescribed for 15% of patients at a severe stage (MMSE<10). Annual follow-up MMSE was performed for only half of patients treated for more than 2 years, and a neuro-psychological assessment for 70% of patients. Neuropsychological assessment was performed mostly in primary care by neurologists or neuropsychiatrists (59.3%) and geriatricians (27%). Institutionalisation was observed for 35.5% of newly treated patients and 42.8% of patients treated for 2 years. Memory clinics were used by less than 7% of patients. Potential cardiac adverse events exist in 17.9% of patients receiving Alzheimer’s disease specific drugs; 3 out of 4 of these patients received cholinesterase inhibitors, known to increase dysrythmia. Neuroleptics and antidepressants are prescribed for 19.3% and 40.2% of patients treated for more than 2 years.

Funding for services to the dependent elderly

Social services for the dependent elderly are co-financed by families, health insurance, pension institutions, local governments (conseils généraux) and communities , national public funds being now provided through the Caisse nationale de solidarité pour l’autonomie (CNSA) , a new financing institution created in 2004, in charge of financial compensation for the dependent elderly and the handicapped. A new institutional framework, empowering CNSA, is expected in 2008. A fifth branch of the social security, specifically dedicated to the risk of autonomy loss, will merge compensation systems for dependence and handicap, regardless of age (4).

Individual public allowance for autonomy

Individual public allowance for autonomy (APA-Allocation personnalisée pour l’autonomie), a financial compensation for the elderly dependent, set up in January 2002, partially funds human aid, assistive technology and specific housing installations for dependent people. Funding is provided jointly by the CNSA and local governments, and granted upon assessment of functional needs for assistance in daily living activities, independently of the health status. Allowance can be granted to dependent elderly people living in the community or in an institution. The allowance for autonomy cannot be recovered by the payor on the estate of the beneficiary.

Eligible, elderly dependent people are assessed by a multi-disciplinary team using an autonomy assessment tool (national scale AGGIR - acronym for Autonomie, Gérontologie, Groupe Iso Ressource ), based on 17 variables.

A set of 10 variables, related to physical and mental autonomy loss, is used to segment patients into 6 iso-resource groups (groups consuming equal amounts of resources) :

  • Group GIR 1 comprises elderly people confined to bed or armchair, with severely altered mental functions, needing essential and continuous presence of caregivers.
  • Group GIR 2 concerns elderly people confined to bed or armchair, with intellectual functions not totally altered, in need of care for most activities of daily living. This group also comprises aging 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 did not lose their autonomy for essential activities of daily living.

Another set of 7 variables is used to describe domestic and social needs of dependent elderly people. These variables are not used in the calculation of public monetary benefits but are used to establish a personal aid plan addressing budget and asset management, meal preparation, cleaning, transportation, purchasing, treatment follow-up, leisure activities.

Public allowance for autonomy is granted only to people over 60 years old, belonging to groups GIR 1 to GIR 4. Allowance tariffs are set by the Ministry of Social Affairs for both home assistance and institutional care. Allowance is granted upon first application for 75% of people asking for home assistance and 90% of people seeking institutional care.

A total of 1 048 000 dependent persons (not necessarily with dementia) were receiving public autonomy allowance in June 2007 (5), of whom 638,000 (61%) were living at home and 410,000 (39%) in institutions. For dependent persons 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, 16% were assessed in GIR 1, 43% in GIR 2, 16% in GIR 3 and 25% in GIR 4.

On January 1st, 2008, maximum monthly allowances allocated to people belonging to the first 4 iso-resource groups were respectively 1,208 € (GIR 1); 1,036 € (GIR 2); 777 € (GIR 3); 518 € (GIR 4)(6). Average allowance granted by local governments was about 29% below the national maximum amount established by the Ministry of Social Affairs. Average monthly allowance for dependent people living at home was 494 €, raising with the level of dependence : 970 € (GIR 1); 763 € (GIR 2); 570 € (GIR 3); 349 € (GIR 4). Average monthly allowance for dependent people living in institutions was 422 € (501 € for combined GIR 1 and 2; 309 € for combined GIR 3 and 4)(5).

Dementia-related dependence in the elderly has been measured in several studies. In the PAQUID cohort (7), about 14% of people above 75 years old were assessed as dependent (iso-resource groups GIR 1 to 4). Part of dementia was very important, as 72% of dependent people assessed in GIR 1-4 groups showed dementia. This proportion reached 100% in the GIR 1 group. Among the heavily dependent people (2.8% of the study population), 88% had dementia. Among patients with dementia, 57% were dependent for at least one ADL and 14% were heavily dependent (dependence for 3 out of 4 activities – toilet, dressing, locomotion, feeding).

Using data from a national geriatric database, national health insurance (CNAMTS) estimated that about 100,000 people with dementia, diagnosed or not, were living at home with a heavy autonomy loss in 1999 (8).

In institutional care, a national survey in 2003 showed that 56% of residents in GIR 1-2, 25% of residents in GIR 3-4 and 8% of residents in GIR 5-6 had a dementia syndrome (9). However, only three quarters of people with dementia living in institutions needed help for their transfers (getting up, going to bed, sitting down), the others having a relative autonomy with locomotion.

Financial barriers for families

Although there are no resource conditions for a dependent person to be entitled to the autonomy allowance (in accordance to equity principles), there is a co-payment based on the dependent person’s income. An individual aid plan, based on need assessment and weighted against the level of dependence, is proposed to the person with a level of co-payment. Costs of individual aid plans use reference costs based on local governments tariffs.

For dependent people living at home, there is no co-payment when the dependent person’s income is lower than 677 € per month (which is the case for 28% of dependent people living at home). There is a progressive co-payment until a monthly income of 2,698 €, then a 90% co-payment above this threshold.

For dependent elderly people living at home, local governments pay approximately 84% of individual aid plans (average cost 494 € per month), with 16% co-payment from the dependent persons.

For dependent elderly people living in institutions, local governments covered only 68% of the dependence tariff (average 422 € per month; 501 € in GIR 1 or 2; 309 € in GIR 3 or 4).

In institutional care, room and board expenditures are mainly supported by families. According to a recent Parliamentary report (10), families unable to afford a monthly payment of at least 1,500 euros cannot access institutional care. Considering a monthly average pension of 830 € for women and 1,460 € for men above 85 years old, annual cost represents for a woman 10 months of pension in an institution (11,12). Collective social aid for room and board, compensating financial needs to access institutional care for the poorest, was awarded to 112,000 people in 2006, which represent 24% of people living in institution (13).

However, this social aid is submitted to resource conditions and can be recovered on estate by local governments after beneficiary’s death, transferring the financial burden to the next generations. Financing institutional care is also an issue for middle-class persons, with a low estate and a revenue consisting mostly of pensions. Policy for out-of-pocket expenses for families is expected to be re-examined in 2008, within the new institutional framework of a fifth branch of the social security, specifically dedicated to the compensation of autonomy for the elderly and the handicapped.

National funding for the development of dementia care services

Two national plans for people with dementia have been implemented in 2001 and 2004, aiming at:

  • recognising dementia as a health priority
  • adapting services to respond better to the needs of people with dementia and their carers
  • facilitating early diagnosis and care
  • improving domiciliary care
  • adapting care homes to take specificities of dementia care into account
  • developing professional education
  • considering early onset patients
  • developing studies and clinical research

In parallel, national policy for the elderly evolved through two plans, in 2003 (plan vieillissement et solidarités, implemented after the deadly heat wave), and a plan for the oldest elderly (plan de solidarité-grand âge 2007-2012) launched in June 2006.

This 2007-2012 plan de solidarité-grand âge stated that neuro-degenerative disorders concerned 70% of placements in long-term-care institutions and 72% of applications for personal autonomy allowance (APA). With a budget of 2.3 billion euros over 5 years, financed by health insurance, plan aimed at :

  1. giving to the elderly dependent persons freedom of choice to stay at home, through the development of home health and social services (7,000 new home hospital places from 2007 to 2010, 46,500 new nursing places at home over 5 years; support to caregivers (12,500 new day care places and 5,500 new temporary residential care over 5 years) and ensuring continuity of care between home and residential care (504 million euros over 5 years)
  2. improving residential care by increasing workforce (improving the average staff/resident ratio from 0.57 to 0.65 over 5 years and from 0.5 to 1.0 for the most dependent persons), creating 5,000 residential care places per year for over 5 years, helping investments for residential home modernisation, decreasing the VAT from 19.6% to 5.5% for adaptation works, controlling service prices (1.39 billion euros over 5 years)
  3. adapt hospital to elderly care, by developing a geriatric pathway and strengthening connections between home and hospital care (400 million euros over 5 years)
  4. ensuring new long-term collective resources to fund dependence, with a law in June 30, 2004 creating the Caisse nationale de solidarité pour l’autonomie and drawing recurrent annual resources of 2 billion euros for the elderly and the handicapped, from employers and employees, through a solidarity payment of 1 worked day per year and the suppression of a legal holiday
  5. develop research and prevention (35.5 million euros over 5 years)

In 2007, dementia has been declared “great national cause” and a nationwide public awareness media campaign has been funded by the State.

A new plan for Alzheimer’s disease and other dementias, with a total budget of 1.6 billion euros over the 2008-2008 period, has been announced by President Sarkozy on February 1st, 2008 (39). It is based on the results of the national expert committee, led by Professor Joël Ménard, which issued recommendations in November 2007 (14).

Financial resources for the new Alzheimer plan will be drawn from expected savings by national health insurance, with a Parliament-approved increase of patient co-payment (franchises médicales) , through a lower reimbursement of drugs (0.50 euro/box), paramedical interventions (0.50 euro/procedure) and patient transportation (2 euros/trip), with a maximum of 50 euros/patient/year. Low income patients and pregnant women will be exempted from this scheme (24). Savings in reimbursements for national health insurance are expected to reach 850 million euros annually, the financial product being allocated to fund plans for Alzheimer’s disease, cancer care and palliative care. Resources allocated to Alzheimer plan, starting with 300 million euros in 2008, are planned to reach 500 million euros in 2012.

For the most part, medico-social expenses of the new plan (1.24 billion euros over 5 years) are financed jointly by national health insurance and Caisse nationale de solidarité pour l’autonomie (CNSA) , healthcare expenses (226 million euros over 5 years) by national health insurance and research expenses (201 million euros over 5 years) by State.

The new 2008-2012 Alzheimer plan sets 11 objectives and 44 measures, organised around 3 main axes :

Axis 1 : improve quality of life for people with the disease and their caregivers

  • objective n°1 : provide increased support to caregivers
    • through the development and diversification of respite care services, with the creation of 11,000 places of day care centers and 5,600 places of temporary residential care, adding to an existing capacity of respectively 7,000 and 3,600 places (169.5 million euros over 5 years, financed by CNSA and health insurance) and 10 experiments of new forms of respite services (2.5 million euros for 2 years for the 10 experiments, financed by CNSA and health insurance) ; strengthening of caregivers rights and education (16.5 million euros over 5 years, financed by State), including a 1,000 euro allowance to caregivers who have given up their salaried position to take care of their relative, to seek new employment; improvement of health follow-up of family caregivers, including one consultation per year per caregiver, aiming for a follow-up rate of 70% of caregivers of people diagnosed with dementia (ALD15) (20 million euros over 4 years, starting 2009, financed by health insurance).
  • objective n°2 : strengthen coordination between all intervening parties
    • through labelling of “unique access points” (« MAIA - maisons pour l’autonomie et l’intégration des malades d’Alzheimer » - houses for autonomy and integration of people with Alzheimer’s disease : 27.9 million euros over 5 years, financed by State and CNSA) and deployment of “coordinators” (case managers) over the whole territory (113.5 million euros over 5 years, financed by State and départements, in partnership with CNSA, national pension insurance and national health insurance). Coordinators will be employed by MAIAs .
  • objective n°3 : allow people with the disease to choose support at home
    • through strengthening of home support, favouring home intervention of specialised professionals trained in dementia care, including assistants in gerontology (a newly created profession), psychomotricians and occupational therapists, to ensure, as soon as diagnosis has been made, therapeutic education, assessment of housing adaptation needs, rehabilitation and cognitive stimulation, and management of behavioural troubles in case of crisis : creation of 500 polyvalent, specialised teams for 5,000 home services places (169.0 million euros over 5 years, financed by CNSA and State); improvement of home support through new technologies (targeted towards smart house, internet and communication tools) to compensate orientation and autonomy loss (4.0 million euros over 2 years, financed by CNSA and national research agency).
  • objective n°4 : improve access to diagnosis and optimise care pathway
    • through the development and implementation of a framework for diagnosis announcement and follow-up (0.10 million euros in 2008, financed by State); experimentation of new flat-fee payment modes for private practice healthcare professionals, operating in group practice or in health centers, in substitution or additionally to fee per procedure payments (non-budgeted measure, financed by health insurance) ; creation of an Alzheimer information card for each patient living in a non-institutional setting, to share information about referent professionals, caregivers, condition of the patient with the disease for emergency situations (0.22 million euros over 2 years, financed by State); creation of local memory centers in zones without any (44.44 million euros over 5 years, financed by health insurance); creation of research and resources memory centers in zones without any (5.7 million euros over 5 years, financed by financed by health insurance); strengthening of high-throughput memory centers : +20% budget increase to extend staffing in neuro-psychologists, in order to reduce waiting time needed to obtain a specialised memory assessment (55.2 million euros over 5 years, financed by health insurance); monitoring of adverse drug reactions (0.2 million euros in 2008, financed by State), improvement of good drug use through national health authority guidelines and programmes for assessment and improvement of professional practices (not financed through this plan).
  • objective n°5 : improve reception in institution for a better quality of life of people with Alzheimer’s disease
    • through the creation or identification of specialised units for people with behavioural troubles, including adapted care and activities day units for non-boarding people with moderate troubles, and “strengthened” units for 10-15 people with activities and boarding on the same premises, for people with important behavioural troubles : creation of 12,000 specific Alzheimer’s places (180.0 million euros over 5 years, financed by CNSA), staffing adaptation of 18,000 existing places (378,0 million euros over 5 years, financed by CNSA), investment for architectural reconstruction and adaptation of 15,000 places (180,0 million euros in 2008, financed by CNSA); creation of 120 specialised cognitive behavioural units for people with Alzheimer’s disease within rehabilitation services. These units will provide service regardless of age or place of living, involving interventions of specific professionals (psychomotrician, psychologist, occupational therapist, gerontology assistant) and psychiatric time (running expenses 66.0 million euros over 5 years, investment 24 million euros over 5 years, financed by health insurance; respect of an upcoming official architectural framework may become discriminant to obtain CNSA funding); study on institutional services for young people with the disease (0.2 million euros in 2008, financed by State) ; identification of a national reference center for young Alzheimer patients (3.0 million euros over 5 years, financed by health insurance).
  • objective n°6 : value skills and develop education for professionals
    • through the development of specific professions and skills for Alzheimer’s disease : creation of a qualifying training curriculum for coordinators (case managers), with a target of 1,000 coordinators trained in 2012 (experimentation and testing of training tool: 2.5 million euros, budgeted within a specific upcoming professions plan, financed by State) ; creation of a new profession named “assistant in gerontology”, skilled in supporting daily life activities and specific supporting care practice for greatly dependent or cognitively impaired elderly people (to be budgeted in a specific upcoming professions plan, financed by State) .

Axis 2 : improve knowledge for action

  • objective n°7 : produce an unprecedented effort for research
    • through research project grants (70.0 million euros over 5 years, financed by CNSA, State and other partners) ; creation of a scientific cooperation foundation to stimulate and coordinate scientific research (1.54 million euros for running expenses over 5 years, initially financed by State, with an initial capital endowment in 2008 of 10 million euros by CNSA and 4.4 million euros by State) ; development of clinical research on Alzheimer’s disease and improvement of non-pharmacological drug interventions (45 million euros over 5 years, financed by health insurance); doctoral and post-doctoral allowances (5.5 million euros over 5 years, financed by the foundation for scientific cooperation or the national research agency for post-doctoral fellows and by State for doctoral allowances) ; positions for assistant clinical managers and university hospital assistants (3.4 million euros over 4 years, financed by health insurance and State) ; research in human and social sciences (8.24 million euros over 4 years, financed by the foundation for scientific cooperation for projects, by the INSERM foundation for doctoral and post-doctoral fellows, and by universities and public research institutions for statutory research worker positions) ; support to innovative research approaches (original, under- or unexplored aspects) on Alzheimer’s disease (5.68 million euros over 4 years , financed by the foundation for scientific cooperation, adding to INSERM “Avenir” positions programme, salaries being supported by universities and public research institutions); support of methodology research groups in human and social sciences (4.92 million euros over 4 years, financed by the foundation for scientific cooperation, universities and public research institutions) ; creation of a research centre for automated image treatment (23.0 million euros over 4 years, financed by the foundation for scientific cooperation) ; cohort studies (12.03 million euros over 5 years, financed by the foundation for scientific cooperation) ; high-throughput genotyping (5.35 million euros over 5 years, financed by the foundation for scientific cooperation) ; sequencing the Microcebus primate genome (5.16 million euros over 5 years, financed by the foundation for scientific cooperation); education of physicians in clinical epidemiology, with a target of all 1,500 practitioners of memory centers and private practice neurologists trained in 2012 (0.40 million euros over 2 years, financed by social security for private practice physicians and State for hospital physicians); development of relations between public research and private industry (0.64 million euros over 4 years, financed by universities and the foundation of scientific cooperation).
  • objective n°8 : organise an epidemiological follow-up
    • through an epidemiological survey within specialised consultations, at the regional level (2.3 million euros over 5 years, financed by health insurance).

Axis 3 : mobilize public opinion around a key societal issue

  • objective n°9 : organise public information and awareness
    • through a unique telephone number and a web site for local information and orientation (3.6 million euros over 5 years, financed by State, local governments, CNSA and Caisse des dépôts et consignations, a public financial institution performing public-interest missions on behalf of France’s central, regional and local governments; budget line includes 0.2 million euros for France Alzheimer); organisation of regional conferences on plan implementation (2.3 million euros in year 2009, financed by State) ; knowledge on public representation of the disease (0.1 million euros in 2008, financed by State)
  • objective n°10 : promote an ethical reflexion and approach
    • through the creation of an ethical reflexion space on Alzheimer’s disease (2 million euros over 5 years, financed by national health insurance); reflexion on the legal status of the person with the disease living in an institution (not budgeted in this plan) ; regular meetings about autonomy of persons with Alzheimer’s disease, with special interest on consent and safety issues (0.2 million euros over 5 years, financed by State) ; information of people with the disease and their caregivers about current treatment protocols in France (0.3 million euros over 5 years, financed by State).
  • objective n°11 : make Alzheimer’s disease a European priority
    • through the inscription of Alzheimer’s disease as a European union priority during the French presidency (not budgeted in this plan); valuing and promoting research at the European level (not budgeted in this plan); organisation of a European conference in Fall 2008 (0.3 million euros in 2008, financed by the foundation of scientific cooperation).

Development of dementia care services

Since 2002, Fondation Médéric Alzheimer has been monitoring the development of services for the elderly and specific services for persons with dementia and their family caregivers, through consistent, homogeneous, yearly nationwide surveys (15-27). During the 2003-2007 period, these surveys show a +35% increase in the number of services for diagnostic and therapeutic follow-up (memory clinics: from 213 in 2003 to 353 in 2007; day hospitals: from 95 to 165; other services: from 164 to 125); a +30% increase in the number of services for gerontological information and coordination (from 538 to 867); a three-fold increase in the number of day care centers (from 33 to 107); a +30% increase of support activities (other than day care centers) for people with the disease.; a 7-fold increase in services organising activities directed towards caregivers (from 282 to 1,946 services) and a 13-fold increase in offered activities (from 427 to 5,965 activities). Between 2005 and 2007, surveys show an increase of+84% of common activities for people with the disease and family caregivers (from 690 to 1,272 activities), offered by 60% more services (from 434 to 693 services). Although total number of nursing homes remained stable between 2003 and 2006, proportion of homes admitting people with dementia increased from 54% to 63% (from 5,710 to 6,276), but more of them with limitations (from 56% to 68%), concerning aggressive or group-bothering behaviours and runaway risk (15)

Population and survival

According to the recent INSERM collective expertise (28), estimated prevalence of people with dementia in 2004 in France was 850,000 people aged 65 and over. Annual incidence of dementia is estimated to 225,000 new cases per year. Mean survival time of people with dementia, estimated from the PAQUID cohort, is 4.5 years for people with a mean age of 82.3 years.

There were 1,048,000 elderly dependent people in France in 2007 (5), accounting for about 10% of men and women 65 years-old and above. The number of elderly dependent people above 75 years old could grow by up to 35% between 2005 and 2025. Increase would be faster after 2025, baby boomers reaching ages of 80-85. Only 6% of men and 16% of women live more than 5 years in dependence. For dependent people, these proportions are 21% and 31%, respectively. Population projections have been made using a microsimulation model (Destinie–modèle démographique économique et social de trajectoires individuelles simulées) based on a representative sample of 170 000 individuals. Model simulates transitions between states of dependence every year and takes into account the higher mortality of dependent persons. Event probabilities were derived through the HID survey (29,30).

Caregiver resource utilisation

The PIXEL study (31) has measured informal caregivers’ time among 569 family caregivers. Seventy percent of family caregivers spend more than 6 hours a day taking care of their relative with the disease.

Resource utilisation for professionals and caregivers has been measured in a sample of 2,614 beneficiaries of public allowance for autonomy, according to living mode and level of dependence (see below) (32).

Table 1. Resource utilisation for professionals and caregivers

 

average number of home caregiving hours

delivered by informal and professional caregivers

professional aid only

(33%)

informal aid only

(4%)

mixed formal and informal aid

at least one aid

(100%)

   

together

(63%)

profes-sionals

informal

Living mode

alone

1h50

2h45

3h25

1h45

1h40

2h45

alone at home with other people

1h40

5h20

6h50

1h40

5h10

5h15

at another person’s place or with other people in a housing

2h00

6h45

8h30

1h30

7h05

6h50

Level of dependence

GIR 1

2h30

6h40

8h55

1h20

6h15

7h15

GIR 2

2h25

4h40

7h30

2h10

5h20

5h50

GIR 3

1h55

4h40

6h20

1h45

4h30

4h50

GIR 4

1h20

4h10

3h30

1h00

2h30

5h50

Total

1h50

5h10

5h45

1h40

4h10

4h30

                 

Costs

Recent INSERM collective expertise on Alzheimer’s disease (28) includes a chapter on socio-economic issues. However, experts point out the limited economic knowledge of Alzheimer’s disease in France and elsewhere, due to the lack of long-term cohort data, to an imprecise delimitation of the target population, of healthcare perimeter and service production costs. It is difficult to obtain data in medico-social and domiciliary sectors, to measure and define a value for informal care.

The tables below reproduce official material from the Parliament report 2005 on Alzheimer’s and related diseases (33).

Table 2. Alzheimer’s disease direct medical costs (in million euros) - disease-specific (other age-related expenses excluded) (33)

Category

Health insurance

Families

Total

%

Visits

94,20

10,50

104,70

11,21

Drugs

173,00

13,00

186,00

19,91

Hospital

62,53

0,00

62,53

6,75

Home nursing

580,34

0,00

580,34

62,13

Total medical costs

910,07

23,50

933,57

100,00

%

97,48

2,52

100,00

 

Table 3. Direct medical costs per known diagnosed person (in euros)(33)

Category

Health insurance

Families

Total

%

Visits

256,50

28,50,

285,00

6,84

Drugs

344,90

24,37

369,27

8,87

Hospital

173,52

11,00

184,52

4,43

Home nursing

3 326,00

0,00

3 326,00

79,86

Total medical costs

4 100,96

63,87

4 164,79

100,00

Table 4. Medico-social costs (in million euros)(33)

 

Health insurance

Local govt

(conseil général)

Families

(dependence)

Families (housing)

Total

%

Home

9,12

1280,21

359,54

0,00

1648,87

18,39

Home aid

0,00

1280,21

193,24

0,00

1 473,45

89,36

of which informal aid

0,00

128,02

19,32

0,00

147,35

 

Day facility

5,04

0,00

3,95

0,00

8,99

0,55

Temporary housing

4,08

0,00

162,35

0,00

166,43

10,09

Long term housing

2 410,50

858,58

381,93

3 666,54

7 317,55

81,61

Total

2 419,62

2 138,79

741,47

3 666,54

8 966,42

100,00

%

26,99

23,85

8,27

40,89

100,00

Table 5. Medico-social costs per person (in euros per year)(33)

 

Amount

%

Home assistance

   

For-profit home assistance

8 628,00

64,83

Public-funded dependence assistance

5 088,00

58,97

Of which family co-payment

768,00

8,90

Other paid assistance

2 772,00

32,13

Non-profit assistance

4 680,00

35,17

Total

13 308,00

100,00

Table 6. Total costs of Alzheimer’s disease (in million euros)(33)

Category

Health insurance

Local govt (conseil général)

Families

Total

%

Medical

910,07

0,00

23,5

933,57

9,43

Medico-social

2 419,62

2 138,79

4 408,01

8 966,42

90,57

Home

9,12

1 280,21

3 59,54

1 648,87

18,39

Institution

2 410,50

858,58

4 048,47

7 317,55

81,61

Total

3 330,12

2 138,79

4 431,51

9 900,00

100,00

%

33,64

21,60

44,76

100,00

 

Table 7. Total cost per patient with Alzheimer’s disease (in euros)(33)

Category

Total

%

 

Home

Direct cost

   

Visits

285,00

1,63

Drugs

369,00

2,11

Hospital

185,00

1,06

Home nursing

3 326,00

19,04

Public autonomy allowance

5 088,00

29,12

Family co-payment

768,00

4,40

Other paid aid

2 772,00

15,87

Indirect cost

 

Informal aid

4 680,00

26,79

Total home

17 472

100,00

 

Institution

Direct cost

   

Visits

285,00

1,07

Drugs

369,27

1,38

Hospital

184,52

0,69

Care

6 560,00

24,60

Dependence

4 872

18,27

Housing

14 400

53,99

Total institution

26 671,00

100,00

Table 8. Total expenses per person for Alzheimer’s disease, by contributor (in euros) (33)

Categories

Health insurance

Local govt

(Conseil general)

Families

Total

% total

Medical care

5 727

0

64

5 791

26.21

Medico-social care

0

4 225

12 082

16 307

73.79

Home

0

2 529

4 085

6 614

29.93

Institution

0

1 696

7 997

9 693

43.86

Total

5 727

4 225

12 146

22 099

100.00

% total

25.92%

19.12%

54.96%

100.00%

Families support more than half (55%) of total expenses.

Table 9. Direct and indirect cost of Alzheimer’s disease by level of dependence (in million euros)(33)

Dependence level

Local govt (conseil général)

Families

Total

%

total

GIR 1 and 2

49,23

18,57

67,80

65,58

GIR 3 et 4

19,21

13,14

32,34

31,38

Total

71,55

31,83

103,38

100,00

% total

69,21%

30,79%

100,00

 

Cost of non-specific services

Nursing care at home has been valued at an average cost of 11 466 € per place and per year (34), home hospital at 169 €/day, rehabilitation or day hospital at 263 €/day (35). Creation of a long-term care place has been valued at 12 500 € per place and per year for 2008 (36).

Cost of specific Alzheimer services (37, 38)

Memory clinics operate in France at two levels. Memory research and resource centers are referral centers for complex diagnoses, have teaching and ethical activities and a regional role; 25 centers obtained a total 2,183 million euros in 2006. Local level memory consultations, involving several medical and paramedical specialists, have a diagnostic role and are in charge of implementing a specific care plan; 366 memory consultations obtained 7,304 million euros in 2006 from regional health agencies (37,38).

Among 161 other gerontological coordinations and 66 gerontological networks (14), ten specific Alzheimer care networks coordinate health- and social care professionals in order to set up individual intervention plans and optimise pathways of care. These ten specific Alzheimer networks obtained 2.24 million euros in 2006 from regional health agencies (37).

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Further references

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Last Updated: jeudi 08 octobre 2009

 

 
  • Acknowledgements

    The EuroCoDe project received financial support from the European Commission. Neither the European Commission nor any person acting on its behalf is responsible for any use that might be made of the following information. Alzheimer Europe also gratefully acknowledges the support it received from Fondation Médéric Alzheimer for this project.
  • European Union
  • Fondation Médéric Alzheimer
 
 

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