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France

2013: National policies covering the care and support of people with dementia and their carers

Background information

Where people with dementia receive care and support

The following table provides estimates of the number of people with dementia living at home, in various types of residential care and in hospitals or psychiatric institutions.

Place of residence

 

YES or NO

Estimated number/

Additional information

At home (alone)

Yes

60% of all people with dementia live at home (alone, with relatives or close friends or with other people with dementia). This includes non-diagnosed cases (OPEPS, 2005).

At home (with relatives or close friends)

Yes

 

At home (with other people with dementia)

Yes

 

In general/non-specialised residential homes

Yes

40% of all people with dementia live in residential care (USLD, EHPAD, maisons de retraite, logements-foyers, petites unités de vie, centres d’hébergement temporaires) (OPEPS, 2005).

In specialised residential homes for people with dementia

Yes

 

In general/non-specialised nursing homes

Yes

 

In specialised nursing homes for people with dementia

Yes

 

In hospitals, special wards or medical units

Yes

 

In psychiatric establishments

No

 

Definitions:

USLD (Unité de Soins Longue Durée): these are long-term care units in a hospital for people for whom the state requires, in principle, constant medical surveillance.  To be admitted to a USLD, the person must show important signs of loss of autonomy/incapacity to wash, get up, get dressed and eat on their own) and require continuous medical and technical care.

Current capacity is 32,000 beds. The mean average stay in a USLD is of a year and a half.

EHPAD (Etablissement d’Hébergement pour Personnes Agées Dépendantes): they are nursing homes for dependent old people. They can be public, private or not-for profit. There are currently 6,850 EPHAD in France, offering over 500,000 places. They provide medical attendance 24 hours a day,

Maison de retraite: this is a residential home that becomes an old person’s place of living. The residents benefit from a private space (bedroom) and collective amenities (food, cleaning, laundry…).

Foyer-logement: this is an intermediary solution between a person’s usual place of living and a residence for older people. Foyers logements are non-medical residential buildings where autonomous elderly people can live in a secure environment.  These people may also benefit from occasional support if needed (external home service such as cleaning support, meals on wheels).

Foyers logements usually propose small (furnished or unfurnished) apartments for private use and areas dedicated to social interaction and access to common service areas such as laundry, restaurant andmeeting rooms.

Petites unites de vie: these units cater for people who neither wish to live on their own nor wish to live in large communities like residential homes. There are small residential places that do not exceed 25 people. They are located in a familiar social environment. The residents have a private space but participate in the community (cooking, gardening…). This allows the residents to live independently and retain their autonomy for as long as possible. These units are managed by a house-keeper.

A thousand of such structures exists in France, some organising medical care.

Centres d’hébergement temporaire:Various solutions exist for people who cannot live on their own for a limited period of time either because their state of health does not allow them to do so or because of the absence of a family member who regularly looks after them. These structures can also allow a smooth transition before entering another structure.

Foundation Médéric Alzheimer’s inventory has identified 10,000 structures, spanning all types of residence. EHPAD and USLD remain the main accommodation structures for people with loss of autonomy, including those with Alzheimer’s disease and other forms of dementia. 71% of them (7000 establishments) offer accommodation and/or care to people with dementia. Most of them are general/non-specialised (Fontaine et al., 2012).

Residential establishments that accommodate most of the people with dementia are EHPAD and USLD. The majority of them are general/non-specialised in that they offer accommodation and care to a wide range of people. But, for 91% and 95% of them, this includes people with dementia.

People with dementia may be cared for in different ways:

  • In specialised establishments for people with dementia, but there are very few (179).
  • In establishments that include specialised units for people with dementia.
  • In general/non specialised establishments, and this is the majority.

According to Fontaine et al. (2012), 50% of residents in establishments experience moderate or severe cognitive impairment. The percentage is low in residential homes (logements-foyers: 17%, maisons de retraite: 32%, petites unités de vie: 41%), but it is high in residential care: it stands at 63% in USLD (medical units in hospital), and 50% in EHPAD (nursing homes).

Admission modalities for people with dementia, some structures can be totally dedicated to this population but are very few (179 in total), other structures can offer one or several specialised units while other structures do not have any specialised units at all. The latter represent the majority of the available structures.

Percentage of structures that accept people with dementia at entry point are the following: among the 10,000 structures that have been identified, 7,000 (71%) have declared to accept people with dementia at entry point, EHPAD and USLD remain the main providers:  91% and 95% of them respectively accept people with dementia at entry point.

The percentage of people with cognitive disorders among the residents is 63% in USLD, 50% in EHPAD, 41% in ‘Petites Unités de Vie’, 32% in residential homes, 17% in foyer logements.

The ratio of staff to residents in EHPAD is 1:1.75 (KPMG, 2012).

The organisation of care and support for people with dementia

  • Care support in general

In France, medical care for people with dementia is reimbursed at 100%. But medical care represents only 10% of the total cost of Alzheimer’s disease. For the remaining 90%, people with dementia, like every old people suffering from dependency, may get an allowance called APA (Allocation Personnalisée d’Autonomie = personalised autonomy allowance). This allowance is allocated by each department / district. The allocated amount is related to the person’s own resources and level of dependency.

When people with dementia live at home, this allowance covers  costs related to the employment of auxiliary staff, home improvements, incontinence products, day care centres. When they live in an establishment, it covers the cost of residential care (EHPAD, USLD, residential homes).

In France, the provision of care and support is especially covered by the professional good practice recommendations published by the ANESM (Agence Nationale de l’Evaluation et de la qualité des établissements et Services Sociaux et Médico-Sociaux = national agency for the evaluation and quality of social establishments and services as well as social-medical services) and by the HAS (Haute Autorité de Santé – French Health Authority).

  • Home care

In December 2011, the HAS published a recommendation on the disclosure of diagnosis and the support of people with dementia. A specialist (neurologist, geriatrician or psychiatrist) has to disclose the diagnosis during a long and dedicated consultation. The specialist has to inform the general practitioner by sending the consultation’s minutes. This coordination between the GP and the specialist is a guarantee of continuity of care and support.

Controlling and monitoring of care and support is multidisciplinary, coordinated by the GP, in cooperation with a neurologist, geriatrician or psychiatrist. The GP has to propose a care and support plan in collaboration with the patient and his family. The GP has to ensure that the plan is implemented in collaboration with the specialist who made the initial diagnosis, and different coordination structures.

This care and support plan includes:      

  • in the recognition of the disease as a long-term disease  (“ALD 15”) for the full reimbursement (100%) of medical care,
  • pharmacological and non-pharmacological treatments,
  • comorbidity treatment,
  • nutritional monitoring,
  • information about associations,
  • information about respite structures,
  • information about social services,
  • advice for adapting home,
  • needs assessments,
  • monitoring by the GP,
  • monitoring by a psychologist or psychiatrist.

 

Then, the GP has to complete a thorough consultation at the patient’s home in order to:

  • talk about the diagnosis and check the understanding of the patient and his family,
  • complete a medical, psychosocial and environmental assessment: falls, weight, conflicts, sleep,
  • assess needs of the patient and the carer,
  • inform the patient about the available structures and financial aids,
  • anticipate the future and take necessary decisions,
  • identify suffering and caregiver burnout.

(Haute Autorité de Santé (2011)).
 
 The INPES (Institut National de Prévention et d’Education pour la Santé = national institute for prevention and health education) published a document in May 2012 to help GPs to carry out this consultation. This is the opportunity for the patient to express his expectations and needs, and to be involved in decisions about care and support (INPES, 2012).

  • Residential care

The law of 02 January 2002 imposed on the EHPAD to set up an individual care plan for each patient. In a recommendation published in 2008 by the ANESM, it was recommended to involve the patient throughout the implementation and the monitoring of the plan, in order to respect his individuality, his lifestyle, his choices, his expectations.

Furthermore, the ANESM published in February 2009 a recommendation for the support of people with dementia in residential care. This recommendation inter alia covers: life habits, washing  nutrition, mobility, sleep, social life, security, dignity, well-being and autonomy. For example, it is recommended to develop a new kind of communication in order to counterbalance the difficulties of expression and participation related to the Alzheimer’s disease (anesm, 2009).

Between 2001 and 2012, the ANESM published four other recommendations about the quality of life in EHPADs:

(http://www.anesm.sante.gouv.fr/spip.php?page=rubrique&id_rubrique=107).

Training

Which social and healthcare professionals provide care and support

The following social and healthcare professionals are involved in the provision of care and support to people with dementia in residential care or living at home in France (Fontaine et al., 2012).

Staff category

Specialities

EHPAD

USLD

Nursing staff

Nurses

99%

100%

Auxiliary nurse

99%

99%

Auxiliary staff *

Psychomedical support

78%

41%

Animateur

90%

92%

Auxiliaire de vie **

42%

11%

Auxiliary nurse gerontology

22%

24%

Allied health professionals

Psychologist

80%

81%

Occupational therapist

30%

67%

Dietician

23%

80%

Physiotherapist

19%

83%

psychomotor therapist

15%

26%

speech therapist

3%

19%

chiropodist

3%

18%

General practitioners

coordination doctor

85%

70%

* provides general assistance, usually with no medical or nursing training

** professional who visits a person who needs assistance in their daily activities at home or in a substitutive place

The type of training that social and healthcare professionals receive

Not all professionals who provide care to people with Alzheimer’s disease in their home or in a structure receive training on dementia during their curriculum. It is thus within the scope of continuous professional training that they can receive specific education about dementia, the support and care that can be given to these people. Continuous professional training is provided by accredited training centres. For instance, France Alzheimer has been accredited since 1991 to provide training to professionals on Alzheimer’s disease and other forms of dementia (http://www.francealzheimer.org/menu-secondaire/formation-professionnelle).

In 2011, 86% of the structures that accepted people with dementia at entry point provided their staff with some specific training to help them care for these people (Fontaine et al., 2012).

The staff members that provide home care, nurses in EHPAD, psychologists, can access short training courses (2-5 days) or longer courses (10-15 days)

In order to offer a professional qualification to the auxiliary nurses and the psycho-medico staff who are already employed in a structure dealing with people with dementia, a new qualification has been created within the Alzheimer Plan 2008-2012; gerontology care assistant (Assistant de Soins en Gérontologie). This 140-hour training does not deliver any diploma, only a EUR 90 bonus each month.

Any employee working with people with dementia can also train as an auxiliary medico-psychologist and get a state diploma. France Alzheimer provides this training which includes some 500 hours of theory including 140 hours specific to the care of a person with dementia.

Finally, the Alzheimer Plan 208-2012 has included the training of an additional 2,000 occupational therapists and psychomotor therapists. An information document directed to these professionals spells out the evaluation and the modalities of re-adaptation and care likely to be carried out in the home of a person with dementia (Haute Autorité de Santé/French Health Authority, 2010).

How the training of social and healthcare professionals is addressed

The training of the professionals in social and medico-social structures (such as the EHPAD) falls within a legal provision. The law regulates the structures’ contribution to the continuous professional training of its staff.

The obligation is variable depending on the annual mean workforce of these structures and the possible sector agreements that have been extended by ministerial decree: from 0.05% of the staff costs for structures of less than 10 employees to 1.60% for structures with 20 employees or more.

In France, a state-run structure (Organisme Paritaire Collecteur Agréé par l'État - OPCA) collects the financial contributions each company has to pay towards the life-long training of staff and then re-distributes it to the companies who engage in the training of their staff.

The OPCA main missions are to advise the employers and the employees, enable the financing of the training deemed necessary to the delivery of the companies missions and the retention or evolution of the competences of the employees.

For the position of gerontology care assistant, there is a competency reference book, an activity reference book and a training reference book published as annexes of the 23 June 2010 decree. All training structures have the obligation to comply with these reference books. (For further details in French, see “Arrêté du 23 juin 2010 relatif à la formation préparant à la fonction d'assistant de soins en gérontologie” on www.legifrance.gouv.fr).

France Alzheimer organises specific trainings for the ASG = gerontology care assistant and  AMP = auxiliary medico-psychologist.

Short trainings are proposed to the professionals who intervene in the home, in EHPAD, psychologists. There are no reference books for these trainings that the training centres have to comply to. The programme, and in particular the importance given to dementia, is dependent upon each training centre.

The diploma of medico-psychologist professional (Aide Médico-Psychologique – DEAMP) was set up by decree n° 2006-255 of 02 March 2006 and the syllabus of the training by decree of 11 April 2006. The training spans over 497 hours of theory training, 140 of these hours being specific to the support of a person with dementia. This can also be accessed at www.legifrance.gouv.fr under “Décret n° 2006-255 du 2 mars 2006 instituant le diplôme d'Etat d'aide médico-psychologique”).

Support for informal carers

Through its local branches, France Alzheimer provides support to the people with dementia and their families during the course of the disease, from diagnosis to end of life.

A psychologist and a France Alzheimer volunteer who has experience in caring for a person with dementia work in a team to organise various activities. This two-person team is trained by the Association and is a main feature of the various activities proposed by France Alzheimer.

France Alzheimer Halt Relay® are organised by some local associations over half days, one to four times a month. They are animated by a trained team composed of volunteers and a psychologist. These Halt Relays are a place where the couples receive support, can talk and exchange through both joint and individual activities. 

France Alzheimer Memory Cafés® welcome both the person with dementia and the carer in a public place open to all. They are orchestrated by a volunteer of a local France Alzheimer branch and a psychologist, sometimes with debates. They are genuine places where families, people with the disease and friends can share information and receive a captive ear.

Some of France Alzheimer’s branches organised friendly or cultural outings are organised for the people with the disease and their families: restaurant, pick nicks, cinema, museums or castle visits.

France Alzheimer also organised speech groups (groupes de parole) that are animated by a psychologist and sometimes co-animated by a volunteer. They give the families an opportunity to meet and exchange experiences about daily problems faced when living with a person with dementia.

Individual interviews are proposed by some local branches. They are led by a psychologist specifically trained to accompany the families having to take important decisions or going through crisis situations.

Respite

The French Alzheimer Plan 2008-2012 has enabled the development and diversification of  respite services in order to offer carers new solutions that are more flexible and better suited to their needs. Different innovative respite solutions have been experimented like holiday stays, cultural and artistic activities, and some of them like multiservice platforms (support, respite) have been tested then developed on the all territory. The number of places in day care centres has been also increased.

France Alzheimer also offers innovative respite solutions that keep the person with dementia and the carer from isolation, accompany the person with the disease and preserve the carer’s health status.

Alzheimer Holiday-Respite Breaks® are organised from May to October in different touristic regions in France. They are managed by volunteers and specialists specifically trained by the association.  These breaks are for France Alzheimer members. They offer the families an opportunity to relax and share experiences, while allowing them to take part in tailored cultural and play activities. Depending on the financial means of the families, France Alzheimer may cover up to half of the cost of the break. 

Unlike all other activities organised by France Alzheimer, the ‘Holiday-Respite Breaks’® require financial participation from the families. However, France Alzheimer dedicates huge funds to make these holiday breaks accessible to the families with reduced means. Activities proposed by France Alzheimer to couples person with dementia / spouse.

Training

The French Alzheimer Plan 2008-2012 has implemented a two-day training programme for carers to help them cope with the disease. In partnership with France Alzheimer, the training is free and offers to carers the knowledge they need, providing the essential tools for understanding the patient’s difficulties, adapting the environment and maintaining relationships. Since 2009, more than 18,500 carers have been trained.

The trainings are given by a psychologist/volunteer team who receives a systematic 14-hour training provided by France Alzheimer. All teams receive the same training, all over the territory. 

Consultation/involvement in care decisions

The law of 2 January 2002, imposed on nursing homes (EHPAD, USLD) to implement an individual care plan for each patient. The ANESM recommended involving the patient throughout the implementation and the monitoring of the plan, in order to respect the person’s lifestyle, choices and expectations. This was an opportunity for the resident to be involved in decisions about care and support.

This law has also required to nursing homes to implement a ‘social life council’ including at least two residents representatives so that families be involved in decisions about the organisation of activities, support and services.

Counselling/support

One of the priorities of the Alzheimer Plan 2008-2012 was to organise a ‘long consultation’ (consultation longue) at the home of the person with dementia. This new type of consultation is carried out by the family GP in the presence of the carer. The aim is to evaluate the needs of the person with dementia, those of the family and the support put in place:

  • discuss the diagnosis and check the understanding of the patient and his/her family,
  • carry out a medical, psychosocial and environmental assessment: falls, weight, conflicts, sleep,
  • assess needs of the patient and the carer,
  • inform the patient and the carer about available structures and financial aids,
  • anticipate the future and take necessary decisions,
  • identify suffering and caregiver burnout.

This consultation was bilaterally agreed by the GPs and the CNAMTS with a convention that took effect on 26 September 2011 and was effectively implemented from March 2012 onwards. The GPs are paid EUR 46 for such a consultation that is fully reimbursed by the healthcare system. It can take place only once a year or more, depending on should the state or the environment of the person with dementia deteriorate. INPES issue in May 2012 a document that should guide the GPs through the consultation ‘Practice Guidance. Alzheimer’s disease: how to conduct a ‘long visit’ (Repères pour votre pratique. Maladie d’Alzheimer: réaliser une visite longue). France Alzheimer contributed to the writing of this document (HAS, 2011).

During this consultation at the patient’s home, the GP may suggest that the carer goes through a dedicated and annual carer consultation (consultation annuelle des aidants). This type of consultation takes place at the GPs practice. This type of consultation seeks to assess the psychological and nutritional conditions of the carer, identify health issues related to the caring of the person with dementia, and propose solutions that are more flexible and better suited to their needs: support groups, training, and psychotherapy.

In 2012, the French Health Authority published some good practice recommendations targeted at the GPs covering the medical follow-up of the carers of people with dementia or related disorders.

In collaboration with France Alzheimer (2011), the HAS also produced a brochure to inform the carers about the availability of such a consultation. It has never been printed on paper for the GPs to distribute due to a lack of funding but can be downloaded (see references section).

On 6 October 2010, the first ‘national carers day’ was organised in France. This is an initiative of the previous government without any link to the Alzheimer Plan. The objective is to reach all the carers, not only those who take care of a person with dementia.  

However, this initiative has tended to lose intensity over the years. One reason may be that the date chosen is too close to World Alzheimer’s Day.

Case management (insofar as this relates to care)

The French Alzheimer Plan 2008-2012 has experimented and deployed over territory some “Centres for autonomy and integration of people with dementia” (Maisons pour l’Autonomie et l’Intégration des personnes malades d’Alzheimer - MAIA). These centres aim to create a better coordination between care, information and support structures, in order to define a personalised care pathway.

The Plan has also implemented two case managers in each centre. The case manager coordinates social and healthcare, providing the link between the teams and guaranteeing real multidisciplinary care suited to each individual’s situation.

More information can be accessed on: http://www.plan-alzheimer.gouv.fr/mesure-no4.html

National Alzheimer Association

France Alzheimer offers the following services and support-

Helpline

x

Information activities (newsletters, publications)

x

Website

x

Awareness campaigns

x

Legal advice

x

Care coordination/Case management

 

Home help (cleaning, cooking, shopping)

 

Home care (personal hygiene, medication)

 

Incontinence help

 

Assistive technologies / ICT solutions

 

Tele Alarm

 

Adaptations to the home

 

Meals on wheels

 

Counselling

x

Support groups for people with dementia

x

Alzheimer cafes

x

Respite care at home (Sitting service etc.)

x

Holidays for carers

x

Training for carers

x

Support groups for carers

x

Day care

 

Residential/Nursing home care

 

Palliative care

 

References

Anesm (2009).Recommandations de bonnes pratiques professionnelles. L’accompagnement des personnes atteintes d’une maladie d’Alzheimer ou apparentée en établissement médico-social. Accessed on 12 November 2013 at: http://www.anesm.sante.gouv.fr/IMG/pdf/reco_accompagnement_maladie_alzheimer_etablissement_medico_social.pdf

http://www.plan-alzheimer.gouv.fr/

Fontaine, D., Castel-Tallet, M.-A, Mouraine, M., and Pivardière, C. (2012). Rapport d’étude, Septembre 2012 – N°2,Accompagnement et prise en charge de la maladie d’Alzheimer: évolution et adaptation des dispositifs depuis dix ans, Fondation Médéric Alzheimer.  Accessed online on 12 November 2013 at: http://pmb.santenpdc.org/opac_css/doc_num.php?explnum_id=13691

Haute Autorité de Santé (2010).Actes d’ergothérapie et de psychomotricité susceptibles d’être realises pour la réadaptation à domicile des personnes souffrant de la maladie d’Alzheimer ou d’une maladie apparentée. Accessed on 25 November 2013 at:

http://www.has-sante.fr/portail/upload/docs/application/pdf/2010-03/alzheimer_-_actes_dergotherapie_et_de_psychomotricite_-_document_dinformation_2010-03-25_12-06-15_255.pdf

Haute Autorité de Santé/Association France Alzheimer (2011).Fait le point avec votre médecin traitant au cours d’une consultation des aidants.Accessed on 25 November 2013 at: http://www.has-sante.fr/portail/upload/docs/application/pdf/2012-10/info_patient_consultation_aidant_ecran.pdf

Haute Autorité de Santé (2011). Maladie d’Alzheimer et maladies apparentées: diagnostic et prise en charge. Recommendation de bonne pratique. Accessed on 12 November 2013 at: http://www.has-sante.fr/portail/upload/docs/application/pdf/2011-12/recommandation_maladie_d_alzheimer_et_maladies_apparentees_diagnostic_et_prsie_en_charge.pdf

INPES (2012). Document destiné aux professionnels de santé - État des connaissances. Maladie d’Alzheimer – Réaliser une visite longue. Accessed on 12 November 2013 at: http://www.inpes.sante.fr/CFESBases/catalogue/pdf/1401.pdf

KPMG (2012). Observatoire des EHPAD – 2012. Accessed online on 12 November 2013 at: http://www.kpmg.com/FR/fr/IssuesAndInsights/ArticlesPublications/Documents/Observatoire-des-EPHAD-2012.pdf

Office Parlementaire d’Évaluation des Politiques de Santé (2005). Rapport sur la maladie d’Alzheimer et les maladies apparentées. OPEPS, accessed online on 12 November at: http://www.assemblee-nationale.fr/12/rap-off/i2454.asp   

Acknowledgements

Fanny Gaspard, Chargée du Suivi des Politiques Publiques, France Alzheimer

 

 
 

Last Updated: Tuesday 25 February 2014

 

 
  • Acknowledgements

    The above information was published in the 2013 Dementia in Europe Yearbook as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme.
  • European Union
 
 

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