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PROXIJURIS PROJECT
The legal recognition of close caregivers in French-Swiss comparative law.
Collaborative Research Project – international instrument (PRCI).
Partnership between Aix-Marseille University (France) and University of Neuchâtel (Switzerland)
ANR Lead Agency – Call for proposal 2015.
1. CONTEXT, POSITIONNING AND OBJECTIVE OF THE FULL PROPOSAL .............................................................. 2
I. Context : close caregivers, a challenge for both the french and swiss societies............................. 2
II. Objectives and problems of this research ..................................................................................... 3
III. The positioning of the project within legal research.................................................................... 7
2. SCIENTIFIC AND TECHNICAL PROGRAM ; ORGANISATIONAL STRUCTURE OF THE PROJECT........................... 9
I. General points concerning the methodological choices ................................................................. 9
A. The interest of a legal research using the comparative method .............................................. 10
B. The contribution of other social sciences and humanities ...................................................... 11
1. Collaborative research and international colloquium .......................................................... 11
2. A pragmatic approach .......................................................................................................... 12
II. Program and organisation of the project ..................................................................................... 13
A. Division of the labor among the researchers .......................................................................... 13
B. Schedule of tasks..................................................................................................................... 16
C. Technical and scientific justification of the requested funds .................................................. 17
1. French costs ......................................................................................................................... 17
2. Swiss costs ........................................................................................................................... 17
D. The research team ................................................................................................................... 21
1. A collaborative research carried out by AMU (France) and UNINE (Switzerland) ........... 21
2. The Aix-Marseille team ....................................................................................................... 22
3. The Swiss team .................................................................................................................... 23
3. STRATEGY FOR TECHNOLOGY TRANSFER, PROTECTION AND USE OF THE RESULTS ; OVERHALL IMPACT OF
THE PROPOSAL ................................................................................................................................................. 23
4. BIBLIOGRAPHICAL REFERENCES .................................................................................................................. 24
I. France ........................................................................................................................................... 24
A. Books: ..................................................................................................................................... 24
B. Reports and advices: ............................................................................................................... 25
C. Unpublished dissertations, thesis: ........................................................................................... 26
D. Journals: .................................................................................................................................. 26
E. Articles: ................................................................................................................................... 26
II. Switzerland ................................................................................................................................. 27
A. Books: ..................................................................................................................................... 27
B.Reports and advices: ................................................................................................................ 28
C. Parliamentary interventions: ................................................................................................... 29
D. Unpublished dissertations and thesis: ..................................................................................... 29
E. Journals: .................................................................................................................................. 30
F. Articles: ................................................................................................................................... 30
G. Public statements: ................................................................................................................... 30
1. Context, positioning and objective of the full proposal
I. Context : close caregivers, a challenge for both the French and Swiss societies
An international collaborative research project – This research project is based on a French-Swiss
collaboration that seems to meet both the objectives and the criteria of the PRCI (international collaborative
research project) instrument. The bilateral agreement reached between the NRA and the SNSF provides a
particularly well-adapted frame. The research is included in the theme 1 (“attitudes toward social risk and
innovation”) of the challenge 8 of the NRA Work Program (“innovative, inclusive and adaptative societies”).
As rightly underlined in the CORDIER report, « the future must be built, we must not only go
through it. Prospective reflections help to clarify the choices; they do not replace them. If they reveal the
challenges, it belongs to the actors of social, political, familial and daily life to provide innovative answers ». By its prospective and comparative dimension, our research project will be used as a tool by the
policy makers and institutional actors involved in the topic of close caregivers.
Meeting the challenge of an aging population – “Health, demographic change and wellbeing” is
one of the challenges included in the research program Horizon 2020. The aging of the population and the
demographic transition constitutes an important issue for our societies. According to the national institute for
statistics and economic studies’ projections, the number of people of more than 60 years old should increase
from 12,8 to 20,9 millions between 2006 and 20351. If we take the example of the canton of Geneva, estimations show that a linear adaptation of the services provided for the dependent elderly to the demographic
evolution could lead to an increase in public health expenses of about 117 %2. This suggests the need of research for innovative tools capable of ensuring equal access to health care and housing, as well as guaranteeing the dignity of dependent people. From a quantitative point of view, in the OECD countries, one person
out of ten brings informal help to a person whose functional capacities are limited3. This figure should increase again in the coming years. Even if the caregivers’ role is hard to measure, this role is essential and its
recognition is an important social and public health issue.
A social issue – The recognition of the role of caregivers is a way of maintaining social ties4, not only between the helper and his close family member or friend but also between the helper and the outside
world. It is proven that some caregivers tend to limit contacts within their own network to serve their dependent relatives. Supporting a relative may also have an impact on one’s professional investment, at least
when it is of high intensity5. It can disrupt working schedules and encourage absenteeism6. Thus, beyond its
compassionate dimension, taking measures in favor of close caregivers is a challenge for companies and
more largely for national productivity.
A public health issue – The problem of close caregivers constitutes a public health issue. On the one
hand, supporting a relative can affect the helper’s health, particularly his mental health7. The risk of burnout
is real and can have a negative influence on healthcare costs. It is indeed proven that relatives of dependent
people take more medication and have a lower health level than the average population. On the other hand,
recognizing the caregivers’ role can help to stabilize health costs. Hospital at home is clearly less expensive
than hospitalization or residence in a medical and social establishment8. Moreover, it meets the wishes of the
major part of the population9.
Page
INSEE, Projections de population pour la France métropolitaine à l’horizon 2050, Juillet 2006 : cité par : AN, Rapport fait au nom
de la commission des affaires sociales sur le projet de loi, relatif à l’adaptation de la société au vieillissement, Par Mme Martine
Pinville, Enregistré à la Présidence de l’Assemblée nationale le 17 juillet 2014, p. 15.
2
Rapport du Conseil d’État au Grand Conseil sur la politique publique cantonale en faveur des personnes âgées en perte
d’autonomie, RD 952, 31 octobre 2012, p. 5.
3
COLOMBO F. et al., Besoin d’aide ? La prestation de services et le financement de la dépendance, Études de l’OCDE sur les
politiques de santé, Éditions de l’OCDE, 2011, p. 108.
4
JOUBLIN H., Réinventer la solidarité de proximité. Manifeste de proximologie, Paris, Albin Michel, 2005, p. 86.
5
COLOMBO F., Op. cit., p. 126.
6
Ibid., p. 108.
7
Ibid., p. 121.
8
Rapport du Conseil d’État au Grand Conseil, Op. cit., p. 5.
9
Ibid.
2
1
A comparative law issue – Comparative research is particularly useful between two neighboring
countries. Comparative law can increase the knowledge of the law thanks to the confrontation to otherness. It
can renew the awareness of national frameworks. Beyond this theoretical aim, comparative law can also be
used to support a cross-border policy in favor of aging people. Indeed, social and public health issues are
shared by France and Switzerland, and collaboration can be a successful way to carry ambitious projects on
the border zone. As evidence to this, we can quote the French-Valdo-Genevan area in which it was proposed
to establish a common sanitary planning program in order to build co-financed nursing homes and therefore
remedy the lack of available space10.
In France, the Handicap-Health-Households survey showed that 10 % of the population living at
home receives regular help from a relative because of health problems or disabilities11. According to the figures provided by the OECD, the percentage of informal caregivers is very different from one country to another. It oscillates between 8 and 16 % of the national population12. If these differences can be explained by
the diversity of criteria used to define care13, other reasons could be discovered thanks to comparative law.
Obtaining relevant data to lead an international comparison is complex because both the indicators and the
definition of caregivers vary, depending on the country considered14. This complexity necessarily limits the
validity of a large scale international comparison15. On the other hand, a small study would enable to achieve
a finer comparison.
II. Objectives and problems of this research
Our goal is to reconsider the various manners of translating into legal ways the stakes of close caregivers. Two lines of research must be considered. The close caregivers play an important role in the health
system insofar as they provide support to the dependant patient (A), that’s why it seems necessary to help
them (B).
A. The caregivers as a support for the dependant patient
The first line of research will consist in studying the relation between the dependent patient and his
close caregiver. We will first consider the legal nature of the link existing between the patient and the helper
(1) and then focus on the legal modalities of the provided help (2).
1. The legal status of close caregivers
Currently, a unified legal status for caregivers doesn’t exist. Indeed, relatives can intervene in various ways to support the patient. In France, legal measures such as « tutelle », « curatelle » or « sauvegarde de
justice » can be organized as soon as representation or marital property law are insufficient. They coexist
with personally anticipated measures such as « la personne de confiance », « les directives anticipées » or
« le mandat de protection future ». In Switzerland, the recent reform of the law concerning adult’s protection
has created several tools, partially new, such as several forms of « curatelle », « la représentation dans le
domaine médical », « le mandat pour cause d’inaptitude » and « les directives anticipées ». It should be
asked whether the variety of these measures is appropriate. Is a legal concept of « caregiver » needed ? What
could its definition be? Does the recognition of the caregivers’ role imply the “professionalization of an occupation”16 ? If not, how to coordinate the caregivers’ prerogatives with those of the professionals or other
protectors of the patient?
The French legal literature concerning the definition and status of the close caregivers is still in its
infancy. Thus, it will be useful to begin our reflection from the definition proposed by other branches of the
social sciences. The concepts currently used in the social science literature are variable, going from “natural
10
Ibid., pp. 43-44.
WEBER A., « Données de cadrage concernant l’aide dans les deux enquêtes Handicap-Santé-Ménages et Handicap-Santé-Aidants
(2008) », in BLANC A. (Dir.), Op. cit., p. 73.
12
COLOMBO F., Op. cit., p. 108.
13
Ibid.
14
Ibid., p. 110.
15
Ibid., p. 118.
16
BLANC A., « Les aidants familiaux : la professionnalisation d’une occupation », in BLANC A. (Dir), Les aidants familiaux,
Grenoble, Handicap, vieillissement, société, Presses universitaires de Grenoble, 2010, p. 51.
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3
11
caregivers”, to “family caregivers” via “close” or “informal caregivers”. The French caregivers association
has defined “familial or de facto caregivers [as] a person who provides a non-professional help, partly or
totally, to a dependant relative, for the activities of the daily life. This regular help can be dispensed permanently or not. It can take many forms: nursing, care, support for education and social life, administrative
procedures, coordination, vigilance/watchfulness, psychological support, communication, domestic activities” 17.
In Switzerland, several definitions have been proposed. For example, a white paper, summarizing the
work carried out during a Geneva symposium in 2007, considers as a close caregiver « any person who
brings, in a regular way, help or services to a dependant person, without having a professional status related
to this activity. This definition includes the elderly couples in which one of the spouses is experiencing a loss
of autonomy. For other relatives, family, friends or neighbours, the regularity, intensity and sustainability of
the provided help must be considered”18.
The advisory commission of Vaud has also proposed a definition. The close caregiver is a “person
who is part of the immediate entourage of an individual dependent on assistance for certain activities of the
daily life. She ensures him, on a non-professional and informal basis, regular services of assistance, care or
presence, which can be of varying nature and intensity, in order to compensate for his disabilities or difficulties or to guarantee his safety. Caregivers can be family members, neighbours or friends. This does not concern the organized forms of voluntary work19”.
In law, the choice of the terms is fundamental; using a term rather than another « has a deep meaning
and is not only formal »20. The definition of legal concepts meets the need for the jurist to conceptualize,
that is to say to abstract and generalize reality (induction), in order to then be able to apply them to a particular case (deduction)” 21. The bill concerning the adaptation of society to the aging of the population uses the
term “close caregiver”, thus bringing closer the French and Swiss vocabulary.
This bill plans to define the close caregiver in the article L 113-1-3 of the social action and families
Code. Would so be considered “as close caregiver of an elderly person her spouse, partner with whom she
concluded a “civil solidarity pact”, de facto partner, parent, relation by marriage, person living with her or
maintaining with her close and stable links, who is not a professional and who regularly helps her to achieve
all or part of the acts of the daily life” 22.
In the Canton of Geneva, close caregivers are defined by the regulations under the law concerning
the care system and home-services as “the people defined in the article 11 of the regulation on health institutions of August 22nd 2006” 23, as well as those “who help a sick or AVS aged relative, on a non professional
basis” 24. The assistance brought “relates to the essential activities of the daily life and/or the instrumental
activities of the daily life; it is provided regularly (several hours per week) or permanently (24h/24)” 25. A
reflection on the legal content of the terms must be led in order not to hastily deduce a similarity of the concepts from a similarity of the legal terms.
2. The legal modalities of the help provided to the patient
The caregivers’ role is now indirectly recognized by several legal texts ruling the presence of the
families in hospitals and medical and social establishments26. The help provided by the patient’s relatives is
expressed in several ways, which raise three types of particular problems.
Page
GUCHER C., « « Aidants naturels » : ambiguïtés et paradoxes d’une notion politiquement construite », in BLANC A. (Dir.), Op.
cit., p. 47.
18
Livre blanc, Proches aidant-e-s de personnes âgées : quelle reconnaissance ? , Synthèse des travaux effectués lors du symposium
du lundi 23 avril 2007 à l’auditoire de la Fondation Louis Jeantet, Genève, p. 2.
19
DIRECTION GÉNÉRALE DE LA SANTÉ, République et canton de Genève, Commission consultative pour le soutien des
proches aidants actifs à domicile, Rapport intermédiaire, 18 octobre 2012, p. 5.
20
BERGEL J.-L., Théorie générale du droit, Paris, Méthodes du droit, Dalloz, 2005, p. 251.
21
LÉCUYER H., « Rapport introductif », in BRUNETTI-PONS C. (Dir.), La notion juridique de couple, Paris, Études juridiques n°
4, Economica, 1998, pp. 3-5.
22
Projet de loi relatif à l’adaptation de la société au vieillissement, Art. 35.
23
CONSEIL D’ÉTAT DE LA RÉPUBLIQUE ET CANTON DE GENÈVE, Règlement d’application de la loi sur le réseau de soins
et le maintien à domicile (RSDom), Art. 34 al. 1.
24
Ibid., Art. 34 al. 2.
25
Ibid., Art. 34 al. 3.
26
THIBAULT-WANQUET P., « La place des aidants naturels : la législation française aujourd’hui », in THIBAULT-WANQUET
P., Op. cit., p. 29.
4
17
Patients’ kin can, at first, intervene in the medical decision itself. It raises the question of the articulation of their rights with those of the patient. The main stumbling blocks are information, consent and
medical confidentiality. Patients are frequently “out of state to express their will” (term used in France)
or “incapable of discernment” (concept used in Switzerland) which requires the intervention of a third
party to exercise their rights.
Patients’ kin can also intervene in the care dispensed to the patient. This intervention is sometimes
spontaneous, sometimes imposed by family duties of which it will be advisable to compare the extent in
each country. Caregivers often provide care (in the broader sense) to their relatives. It can cause legal
difficulties. Are close relations trained enough to intervene as such? What could the conflicts of interests be? What legal mechanism could provide protection for the patient against his relatives or, on the
contrary, preserve the relationship between the helper and the dependent person in hospital?
The studies carried out in the field of the psychology of ageing will constitute an interesting starting
point. Indeed, some contributions have identified the negative consequences of dementia diseases on the
mother-daughter tie. It is necessary to identify the risk-factors of appearance of mistreatments27, to then
be able to look for measures to limit their occurrence.
Finally, the caregivers, when they are part of the family of the patient, are bound by financial obligations towards the dependent person.
o We will have to determine the balance, in each country, between familial and national solidarity.
Indeed, funding dependence represents a significant burden and is a source of anxiety and difficulties for families. For example, before its inclusion on the long-term illness list, the cost of the
Alzheimer’s disease for families was of 2,29 billion euros28.
o Besides, important territorial disparities have been found concerning the practical application of
the maintenance obligation29. A study of the jurisprudence should thus be conducted. Such a
study will allow carry out a reflection about the implementation of the legal rule and will usefully complete earlier studies30.
Beyond these particular problems, the help supplied by the dependent person’s relatives raises the
question of whether powers and duties should be legally recognized. Should a specific legal regime be organized for close caregivers? Should this legal regime be uniform or based on diversified and flexible tools?
What could it be? Should there be a convergence between the elderly and the disability policies?
B. Helping the close caregivers
Identifying the role of caregivers as a supporting entity for the dependent person will then allow to
think about the needs of caregivers themselves. This aspect will be the second line of the research. Indeed, so
that the caregiver provides effective support to his close dependent relative, and therefore becomes an effective partner to support the sustainability of the health system, measures must be taken in his/her favor. We
will first identify what are the legal stakes of helping caregivers (1) and then launch the thought process concerning the legal ways to support caregivers (2).
1. The legal stakes of helping caregivers
We can identify several stakes of the help to caregivers:
Page
27
DECATOIRE N., La maladie d’Alzheimer à domicile, Paris, Tiens-moi la main, Éditions épidaure, 2013, p. 308 ; KORFFSAUSSE S., « « Sans désir, sans mémoire, sans connaissance ». Une approche psychanalytique du handicap et du vieillissement »,
in BLANC A. (Dir.), Op. cit., pp. 136-137 : l’auteur souligne que la dépendance est la « porte ouverte aux tendances perverses ».
28
Ibid., p. 79 et s.
29
GRÉVY M., « La solidarité familiale dans le cadre de l’aide sociale », Recherches et prévisions, Dossier solidarités familiales,
Septembre 2004, n° 77, p.
30
For example : SAYN I., MUNOZ PEREZ B., La contribution des familles au financement de l’hébergement collectif des
personnes âgées, Les recours judiciaires formés par les autorités administratives, 1988-2008, Ministère de la justice et des libertés,
Direction des affaires civiles et du sceau, Septembre 2009, 50 p.
5
Guaranteeing the helpers’ freedom: pressures can be exerted on the caregivers’ freedom of
choice. According to C. GUCHER, the “deepest motivation of the familial help” is complex and
“the decision to start to help does not always signifies the freedom of decision” 31. She reports
the particularly significant remark of a caregiver who said “we have decided to welcome him…
the choice was imposed” 32. The notion of “moral duties”33 overlaps the concept “legal duty”34.
Many reasons can determine the commitment in the familial help. The latter finds “her foundations in the social and cultural representations of familial solidarities”35. Other determinants
such as “professional, affective and geographical availability” 36, “familial biographies” and
“individual path” 37 can also play a role. The personal freedom of the caregiver, which is constitutionally warranted in both countries, must be protected. A better knowledge of the weight of
the constraints, revealed by other social sciences, will enable to think about the legal mechanisms likely to be mobilized in order to guarantee the helper’s self-determination right.
Guaranteeing the helpers’ health: taking care of a dependent elderly person takes a lot of time.
This task is particularly exhausting and can affect the caregivers’ health who therefore also become potential patients. That is why the CORDIER report advocated, on the one hand, “an appropriate medical follow-up, including regular health diagnosis, for each caregiver, in order to
assess his ability to take care of the dependent person” and on the other hand, the development
of a psychological support38. This report also suggested to assess the caregivers’ needs at the
stage of personalized plans for compensation and “personal autonomy benefits” (APA) assistance plans39.
Guaranteeing equality: a survey shows that caregivers are predominantly women since they are
involved in 66 % of cases40. It poses a problem concerning equal rights between women and
men. An analysis under the prism of gender will thus have to be envisaged.
The usefulness of economic assistance to caregivers.
We will have to determine what could be the legal grounds of the States’ action in favor of caregivers and to think about the articulation of local and national skills. Under Swiss law, it will also be necessary
to consider the need for a federal legislation and the constitutional bases that could justify the Confederation’s involvement.
2. The legal modalities of helping caregivers
Having determined the legal grounds of the State’s action, it will be possible to look for the measures
which could be taken and to determine the way they could be implemented.
The recognition of rights in favor of caregivers, in the footsteps of the recognition of patients’
rights, must be studied, considering both the individual and collective rights (for example : caregivers’ associations). The health care users’ collective rights “include all the measures enabling the users’ representation in order to defend their rights and their contribution to the health policy’s elaboration”41. The theme of
close caregivers can throw an interesting light on the construction of collective rights. It can show the importance of the role of associations in the development of a public policy. Indeed, several associations or
inter-associations groups have started a reflection on the role of the caregivers of dependant or disabled people, at a national as well as a supranational level. We can give the example of the research work led by the
Page
cit., p. 37.
32
Ibid.
33
Ibid.
34
About this concept : OUEDRAOGO R. W., La notion de devoir en droit de la famille, Bruxelles, Bruylant, 2014, 536 p.
35
Ibid.
36
Ibid., p. 149.
37
Ibid., p. 153.
38
CORDIER A., FOUQUET A., La famille, espace de solidarité entre générations, Conférence de la famille, Rapport et propositions
remis à Philippe BAS, 2006, p. 28.
39
40
cit., p. 37.
41
Available in http://www.sante.gouv.fr/droits-collectifs.html, 29 décember 2014.
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31
Confederation of family organizations of the European community, the French national union of family associations or by the inter-associative group of family caregivers42. It will be useful to study the influence of
the proposals carried out by theses associations on the parliamentary work, in order to develop the reflections
on the citizen’s involvement in the debate and elaboration of sanitary and social legislation43. This search
will be enriched by the French-Swiss comparison, the Helvetian system being characterized by the important
place granted to the citizens in the legislative process.
Concerning the adoption of particular measures, the main modalities envisaged will be measures of
respite, rights regarding pensions, psychological support after the patient’s death, leave to provide care to a
dependent relative or accompany a person at the end of his/her life, flexibility of working hours, wages or
compensations to pay the work of care, social rights, relief, discussion groups, training, information, return to
employment… It will be necessary to draw up, in each of the two countries, a list enumerating the services
that could benefit to the caregivers and their conditions44.
The assets and failings of the existing mechanisms will be underlined and suggestions for improvements will be made. To do so, other social sciences will be mobilized. A study, led by a clinical psychologist
has, for example, proposed “five axes” to ensure a “psychotherapeutic help”. These axes include “the existence of a place where the family members of demented elderly people can talk; the acceptance of/request for
the help coming from the family network; the fact to benefit from concrete information given by the professionals about the disease and the available help; the satisfaction of their needs of meeting other families confronted with the same diseases” 45.
III. The positioning of the project within legal research
An innovative legal research – The subject of close/family caregivers is a relatively new field of research46. « Proximology » can be defined as an area of research at the crossroads of medicine, sociology,
psychology and economics, interested in the relationships between the patient and his family member or
relative47. It favors a renewed approach as it doesn’t focus on the dependent person and her relation with the
medical world and more widely with the public and private institutions, but on her relatives. It studies their
participation in the caring relationship and the effect of the pathology on their own life. Therefore
« proximology » operates a paradigmatic shift in the universe of health and has a strong potential of innovation48. Our research joins this dynamic which it intends to extend in the legal field.
Indeed, until now, the main part of the research has been developed in the medical, nursing, sociological and economic domains. Legal research is still incomplete because it is essentially focused on patients’ rights and dependence. Other social sciences can sustain the legal reflection about close caregivers,
since this subject is at the crossroad of several fields and disciplines49. The BRIET report observed that the
study of the assistance to the families in order to support the elderly was initiated by gerontologists and not
by sociologists. The latter rather dedicated themselves to the “role of social reproduction played by the family”50. The report initially refers to the work undertaken by the national foundation for gerontology and the
national pensions fund (CNAV) which criticized the “institutional separation between familial and elderly
policies” 51. It then recalls Paul PAILLAT’s works advocating “a welfare state model based on a combination of public intervention and family solidarity and not on a social protection development model which
42
SÉRAPHIN G., « L’Europe et le national : un dialogue fructueux pour l’aide aux aidants ? », in BLANC A. (Dir.), Op. cit., p. 19
VIGIER V., L’embryon citoyen : formation et participation, Bordeaux, Les cahiers de droit de la santé du sud-est, Les études
hospitalières, LEH, 2010, 203 p.
44
DECATOIRE N., La maladie d’Alzheimer à domicile, Op. cit., p. 71 (France) et p. 405 (Swiss) ; MINISTÈRE DES AFFAIRES
SOCIALES ET DE LA SANTÉ, Aidant familial, Le guide de référence, Paris, Prévenir & accompagner, La documentation Française, 2013, p. 15 ; ANCHISI A., DESPLAND B., « Les proches d’un parent âgé dépendant : le cœur du dispositif de l’aide et des
soins à domicile en suisse », in BLANC A. (Dir.), Op. cit., pp. 182-187.
45
MYSLINSKI M., « Conséquences psychologiques des maladies démentielles sur les liens familiaux », in BLANC A. (Dir.), Op.
cit., p. 111.
46
JOUBLIN H., Op. cit., p. 19.
47
Ibid.
48
Ibid.
49
THIBAULT-WANQUET P., « Comment travailler avec les aidants naturels auprès du patient hospitalisé », in THIBAULTWANQUET P., Op. cit., p. 82.
50
BRIET R., MONTALEMBERT M. (de), La société intergénérationnelle au service de la famille, Conférence de la famille,
Rapport de propositions remis à Philippe BAS, 2006, p. 19.
51
Ibid., p. 20.
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43
would replace the family solidarity”52, as well those of Claudine ATTIAS-DONFUT focused on the “family
care” in a social approach of ageing53.
A research to support a public policy under development in both countries – Gradually, the issue of caregivers has emerged in the political agenda of both countries. In France, the question was initially
put on the front of the scene in 1991, when the report SCHOPFLIN proposed the “recognition of the family’s
help in the dependency care” and of the “help to the close caregivers” 54.
The year 2006, appeared as a turning point, since the conference on the family focused on the family
solidarity. Two task-forces, respectively called “the family, area of solidarity between generations” and “the
intergenerational society in the service of the family” were created55. The first working group’s task consisted in “examining the necessary articulation between family and professional caregivers in families experiencing difficulties due to illness, disability, ageing” in order to make proposals56. On this occasion, “priority
axes” 57 were identified: “a prevention policy (…), the organization of respite formulas at home or thanks to
temporary housing, leave of absence to accompany a close relative (…), a better recognized right to retirement, an easier return to work, without ever omitting the absolute necessity of a synergy between family help
and the contribution of the professional home-care services (…)”58.
Then, several plans emphasized the caregivers’ role. We can quote, as examples, the “old age solidarity plan” launched in 200659, the “successful aging plan” dating back to 2007, the “Alzheimer plan” announced in 200860, or the “neurodegenerative diseases plan 2014-2019” 61.
The work of reflection on the close caregivers led to the adoption of several texts, which were not
exclusively dedicated to this issue. We can cite the law of February 11th 200562, the social security financing
act for 2007 which created the family support leave63, the law guaranteeing the future and justice of the pension system64. The subject is currently on the agenda with the discussions on the bill concerning the adaptation of society to the aging of the population which proposes to support and value the role of close caregivers65.
In Switzerland, several cantons have adopted an active policy in favor of caregivers66. For instance,
the canton of Fribourg grants a fixed allowance which constitutes a “financial support allocated to the parents and relatives who bring an important and regular help to a disabled person in order to enable him to
live at home”67. In the canton of Geneva, the “care-network and home care service” act aims at “establishing
a network that promotes home care, at encouraging the involvement of families and relatives and at bringing
them the necessary support” 68. The care network’s mission consists in “promoting the help to caregivers” 69,
who benefit from « respite measures, support and advice (…) in order to promote home-care »70. The regu-
52
Ibid.
Ibid.
54
Ibid.
55
56
Ibid.
57
Ibid., p. 11.
58
Ibid.
59
MINISTÈRE DÉLÉGUÉ À LA SÉCURITÉ SOCIALE, AUX PERSONNES ÂGÉES, AUX PERSONNES HANDICAPÉES ET
À LA FAMILLE, Plan solidarité – grand âge, Présenté par Philippe BAS, 27 juin 2006, p. 2, 4, 10, 13, 21.
60
Plan Alzheimer et maladies apparentées, 2008-2012, 84 p., Mesures 1, 2, 3 , 41.
61
MINISTÈRE DES AFFAIRES SOCIALES, DE LA SANTÉ ET DES DROITS DES FEMMES, Plan maladies neurodégénératives, 2014-2019, 119 p., Mesures 7, 20, 21, 28, 29, 32, 34, 41, 46, 48, 50, 51, 55, 56, 67, 69, 71, 75, 85, 86, 87, 90.
62
Loi n° 2005-102 du 11 février 2005 pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes
handicapées, JORF, 12 février 2005, p. 2353, Art. 4, 9, 12, 24, 79, 80.
63
Loi n° 2006-1640 du 21 décembre 2006 de financement de la sécurité sociale pour 2006, Art. 125.
64
Loi n° 2014-40 du 20 janvier 2014 garantissant l’avenir et la justice du système de retraites, JORF, 21 janvier 2014, p. 1050, chap.
5.
65
Projet de loi relatif à l’adaptation de la société au vieillissement, Art. 35.
66
GHELFI F., BLANC T., DEMONT M., « Les proches aidants dans les cantons de Vaud et de Genève », Ps : info, 2014, n° 3, p. 5.
67
GRAND CONSEIL DU CANTON DE FRIBOURG, Loi sur l’aide et les soins à domicile (LASD), 8 septembre 2005, RSF 823.1,
Art. 3.
68
GRAND CONSEIL DE LA RÉPUBLIQUE ET CANTON DE GENÈVE, Loi sur le réseau de soins et le maintien à domicile, 26
juin 2008, Art. 1.
69
Ibid., Art. 5.
70
Ibid., Art. 7.
Page
8
53
lation under the act insists on the way the relatives can be identified71 and on the measures concerning information and training72. In the canton of Vaud, a cantonal program, implemented since 2011, “reinforces the
aids and services useful to the relatives who surround people of all ages facing disability, disease or end of
life”73. Measures of assistance to caregivers (information and support center, information, relief, psychological support, courses and workshops, support groups…) add to financial assistance74.
The growing importance of the caregivers’ issue also explains that the federal authorities show a particular interest in this topic75. A reflection is currently examining measures in order to complete those who
already exist76. A research group has been tasked with carrying out an analysis “of the situation concerning
the assistance allowance in the cantons and towns” 77 and of the “respite services” 78. After this inquiry, possible responses and further leads to explore have been proposed79. The Federal Council has recently adopted
the “action plan for support and respite of relatives providing care”, composed of four areas for action80,
which is “part of its health-policy priorities”Health2020”” 81. Beyond the work carried out under the aegis
of the Confederation, other specific researches are in progress. A research program on the prevention of
close caregivers’chronic stress, led by the Department of nursing sciences of the University of Applied Sciences of Fribourg, has received 100 000 CHF from the Leenaards Fundation. Its aim consists in “evaluating
if the Quebec program “learn to feel better… to help better” caters for the Swiss context”82.
We will complete these researches thanks to a large-scale comparative law study and make suggestions proposals in order to handle the translation into the legal sphere of the stakes concerning caregivers.
2. Scientific and technical program ; organisational structure of the project
After some general remarks concerning the methodological choices (I), the research program and
program and organization (II), the research team (III) will be presented.
I. General points concerning the methodological choices
To stimulate the reflections concerning the socio-legal recognition of close caregivers, several tools
will be used. The legal research will resort to the comparative method in order to profit from the Swiss experience, country in which the legal reflection is quite advanced (A). The contribution of other social sciences
and humanities (B) and of the practice (C) will be necessary.
Page
CONSEIL D’ÉTAT DE LA RÉPUBLIQUE ET CANTON DE GENÈVE, Règlement d’application de la loi sur le réseau de soins
et le maintien à domicile (RSDom), Art. 35.
72
Ibid., Art. 36 al. 1 et 3.
73
Available in: http://www.vd.ch/themes/social/vivre-a-domicile/proches-aidants/, 30 décember 2014.
74
http://www.vd.ch/themes/social/vivre-a-domicile/proches-aidants/aides-et-services/, 30 décember 2014.
75
Initiative parlementaire déposée au Conseil national par Jean-François STEIERT, Exonération fiscale de l’indemnité forfaitaire en
matière d’aide et de soins à domicile, n° 12.453 ; Interpellation déposée au Conseil national par Cesla AMARELLE, Le travail d’aide
aux proches rémunéré. Quelles adaptations pour les futures politiques publiques ?, n° 13.3214 ; Initiative parlementaire déposée au
Conseil national par Lucrezia MEIER-SCHATZ, Créer une allocation d’assistance pour les personnes qui prennent soin d’un proche,
n° 11.411 ; Initiative parlementaire déposée au Conseil national par Lucrezia MEIER-SCHATZ, Permettre aux personnes qui
s’occupent d’un proche de prendre un congé de repos, n° 11.412 ; Postulat déposé au Conseil national par la Commission de la
sécurité sociale et de la santé publique-CN, Prévoir des allocations d’assistance et des possibilités de décharge pour les personnes qui
prennent soin d’un proche, n° 13.3366 ; Postulat déposé par Anne SEYDOUX-CHRISTE, Congé rémunéré d’une durée suffisante
pour les parents d’enfants gravement atteints dans leur santé, n° 09.4199 ; Initiative parlementaire déposée par Rudolf JODER,
Meilleur soutien pour les enfants gravement malades ou lourdement handicapés qui sont soignés à la maison, n° 12.470 ; Mesure 65
de l’arrêté fédéral sur le programme de la législature du 15 juin 2012 : « encourager la conciliation entre activité professionnelle et
prise en charge de proches » ; OFSP, Rapport du Conseil fédéral sur les proches aidants, Available in :
http://www.bag.admin.ch/gesundheit2020/14638/14639/index.html?lang=fr&download=NHzLpZig7t,lnp6I0NTU042l2Z6ln1ae2IZn
4Z2qZpnO2Yuq2Z6gpJCLe317f2ym162dpYbUzd,Gpd6emK2Oz9aGodetmqaN19XI2IdvoaCUZ,s-, 10 november 2014.
76
Art. 36 al. 1 LTr ; Art. 324a and 329 al. 3 CO ; Art. 29septies LAVS ; l’article 51 OAMal.
77
OFSP, Rapport du Conseil fédéral sur les proches aidants, Op. cit., p. 29.
78
Ibid., p. 31
79
Ibid., p. 31 et p. 34.
80
« Information et données », « qualité des offres de décharge et accès aux prestations », « compatibilité entre activité
professionnelle et prise en charge d’un proche malade et en situation de dépendance », « congé pour tâches d’assistance ou autres
formes de soutien » : Ibid., p. 6-7.
81
http://www.bag.admin.ch/themen/gesundheitspolitik/14437/index.html?lang=fr, 7 february 2014.
82
« La Fondation Leenaards récompense un projet de recherche de la Haute école de santé Fribourg »,Available in :
http://www.heds-fr.ch/FR/ecole/actualites/Pages/2014_Alzheimer_SPI.aspx, 8 february 2015.
9
71
A. The interest of a legal research using the comparative method
The choice of a French-Swiss comparison – The choice of Switzerland can be explained by several
reasons.
First, from a general point of view, this country is at the crossroads of several cultures and languages; this situation can reveal the social and cultural elements that contribute to shape legal rule.
Then, from a more specific point of view, the subject of caregivers is topical. The federal structure of
the country turns out to be particularly interesting. Indeed, several cantons, such as Geneva, Fribourg, Valais
and Vaud have adopted an active policy in favor of caregivers83. They can constitute a kind of laboratory to
experiment new legal instruments.
Finally, from a pragmatic perspective, Swiss law is often neglected by the specialists in comparative
law. The FELICIE law group, whose aim was to study “the place of the families in the care of dependant
elderly people”, focused on Germany, England, Belgium, France, Italy and Portugal84. Swiss law is also very
interesting. Even if it is mentioned in several works, they have a limited scope and simply describe the foreign law, without making a real comparison. A few examples can yet testify of the usefulness of a FrenchSwiss study dedicated to caregivers.
• As Swiss law allows assisted suicide, it could be a fertile ground to think about the assistance to the
relatives after death. The French commission of reflection on the end of life has, indeed, underlined
“the lack of comparative studies on the mourning after assisted suicide or euthanasia” and considered that “research works are highly needed” 85. More generally, a reflection concerning the care to
the caregivers after their relative’s death is suggested86. The Swiss experience can enrich the current
proposals resulting from the bill concerning the adaptation of society to the aging of the population.
• Moreover, several cantons have adopted policies in favor of caregivers. They can constitute a kind of
laboratory to experiment with new legal instruments. The Swiss experience can enrich the current
proposals resulting from the bill concerning the adaptation of society to the aging of the population.
On the other hand, the existing measures and leaves in French law can enrich the current Swiss reflections, especially concerning the “congé pour tâche d’assistance”.
The choice of the functional method – We will use both the “function of knowledge”87 and the
“subversive function”88 of comparative law. With regards to methodology in comparative law, the functional approach consists in determining, within the frame of each legal system, the “problems to solve” and the
“solutions provided”89. This method will enable to overcome the disjointed nature of some notions and concepts used in France and Switzerland. Its interest lies in its pragmatic dimension since it starts from concrete
questions. This method must however be accompanied by a deep contextual setting in order to sidestep the
risk of a stereotypical comparison, which the functional approach is occasionally criticized for.
Choice of the legal sources – This criticism will determine the choice of the sources of our research.
It will be necessary to study the various “formants”90 that shape the legal rule.
• Our study will imply a complete review of the doctrine which will be carried out in two steps. We
will first look at general works thanks to the electronic catalogs « SUDOC » in France and
« RERO » in Switzerland. Specialized books and doctoral thesis will then be consulted. They will be
identified thanks to the aforementioned catalogs and the “Swiss legal thesis” catalogue. The articles
are now available on French (BNDS, Cairn, Dalloz, Dictionnaires permanents, Lamyline, LexisNexis, Lextenso, Science Direct…) and Swiss digital data-bases (Weblaw, Swisslex, Uni.recht…). The
oldest documents (i.e. not yet digitized) will be read in libraries. The exhaustive study of the doctrine
will enhance our thinking and enable us to refute the uniqueness of the legal rule.
83
GHELFI F., BLANC T., DEMONT M., « Les proches aidants dans les cantons de Vaud et de Genève », Ps : info, 2014, n° 3, p. 5.
SAYN I., Projet FELICIE, Law group, La place de la famille dans la prise en charge des personnes âgées dépendantes (Allemagne,
Angleterre, Belgique, France, Italie, Portugal), Rapport de synthèse, Janvier 2006, 50 p.
85
SICARD D., Penser solidairement la fin de vie – commission de réflexion sur la fin de vie en France, Paris, Collection des
rapports officiels, La documentation française, 2012, p. 67.
86
LALANDE F., VEBER O., La mort à l’hôpital, Tome 1, IGAS, Novembre 2009, pp. 92-93.
87
SACCO R., La comparaison juridique au service de la connaissance du droit, Paris, Études juridiques comparatives, Economica,
1991, p. 8.
88
MUIR-WATT H., « La fonction subversive du droit comparé », RIDC, 2000, Vol. 52, n° 3, p. 503.
89
JALUZOT B., « Méthodologie du droit comparé, bilan et perspectives », RIDC, 2005, Vol. 57, n° 1, p. 39.
90 SACCO R., Op. cit., p. 35.
Page
10
84
•
This study will be completed by a case-law review, mainly concerning the judicial actions against
the maintenance debtors. As this field of research is narrower, it will be possible to make an exhaustive analysis of case-law. The references of the court’s decisions will be sought in general works,
annotated codes, databases and on the websites of the French and Swiss courts (légifrance,
ArianeWeb, “Cour de cassation”, “Tribunal fédéral”, cantonal courts…).
•
A detailed study of the parliamentary work will be made in order to identify the historical, political
and sociocultural factors likely to influence the legal norm.
A Belgian study showed “differences of conceptions and practices depending on the regions and
communities concerned” 91. In Switzerland, A. Cappellari’s thesis has identified a scission between
the Latin and German-speaking cantons, especially concerning assisted reproductive technology92
and sexual education93. These observations encourage us to search the historical and sociocultural
reasons that can explain the differences between the cantonal legislations. Do such dividing lines exist concerning the legal treatment of close caregivers?
Even though France is not a federal state, geographical considerations must also be taken into account. Indeed the progresses concerning the recognition of the relatives’ role are different in the
fields of disability and adult’s protection. These variations could be explained by the transfer of
powers in the process of decentralization94. In this way, G. SÉRAPHIN notes that “the difference of
treatment of this family or private solidarity is likely to be linked with the authorities that control and
fund these public policies. For disability, it’s clearly the department, whereas it is still the State concerning the adults’ protection strictly speaking. The shy recognition of the assistance to the family
guardians in the texts (…) is likely to be related to the State’s budget problems, all the authorities
massively restrain all kind of new expensive public policy, even if it can lead to long-term savings”.
The division of competences can therefore also have an effect on the decision-making process concerning caregivers. The parliamentary works are, for the most part, available on the Helvetic Confederation’s website, Curia Vista, Lexfind and on Légifrance. The others will be consulted in library.
B. The contribution of other social sciences and humanities
A research concerning caregivers cannot be confined to the legal field. Interdisciplinary exchanges
have been led by the French national consultative ethics committee and the Swiss national advisory commission on biomedical ethics. Their advices and position statement will have to be studied.
1. Collaborative research and international colloquium
The research will be led by jurists and will last two years. Even if the research team is only made of
jurists, interdisciplinarity will not be neglected. Other disciplines will be mobilized during a French-Swiss
colloquium. Five domains must be requested to deepen the legal reflection:
• Associative domain;
• Nurse and medical domain;
• Political domain;
• Sociology of health;
• Health economics.
BLANC A., « Introduction », in BLANC A. (Dir.), Op. cit., p. 19 ; MASUY A. J., « Les politiques de soutien aux aidants proches
en Belgique : un développement typiquement belge », in BLANC A. (Dir.), Op. cit., p. 206 et s.
92
CAPPELLARI A., L’influence du droit de la santé sur le droit extrapatrimonial de la famille, Repenser le droit français à la
lumière du droit suisse, Aix-Marseille/Neuchâtel, Thèse en droit, 2014, § 10 et § 32.
93
Ibid, § 337.
94
BLANC A., « Introduction », in BLANC A. (Dir.), Op. cit., p. 13.
Page
91
11
The first six months of the project will be dedicated to legal research but that period will also allow
for the constitution of the interdisciplinary network around the theme of close caregivers. The two coordinators will get in touch with people involved in the five domains mentioned above. In each country, the juristcoordinator will designate a personality of each domain. A first meeting between all these experts will take
place in Aix-en-Provence. Its aim will consist in determining common problems which will have to be treated.
At the end of a period of one year, each expert will write an article to answer the questions determined during the first meeting. These articles will then be distributed to all the experts.
After a second period of six months, a second meeting of the experts will be organized in Aix-enProvence in order to make a preliminary comparison. After this comparison, the jurists will be able to propose legal ways to translate the multidisciplinary reflections.
The colloquium (2 days) will take place in Switzerland at the end of the second year. It will be based
on a solid exchange between the two countries and on a preliminary comparative reflection. The day of the
colloquium, the articles will be distributed (containing national experts’ articles, comparison, and legal analysis). A round table or debate with the audience will follow.
2. A pragmatic approach
Finally, practice will have to be taken into account.
Comparative law shows that similar rules can be applied differently. On the contrary, two countries can have the same practices and different laws. This observation was made by the Swiss Federal
council concerning organ donation. This authority has refused to introduce the “opt out” system, because
“the presume consent is de facto rarely applied in the countries which have officially adopted it, in practice
most of them apply the opt in system in its broadest sense” 95. We will have to check if this kind of disjunction between practice and legal rules exist concerning family caregivers. It will improve the understanding of
the legal system.
It will also be necessary to think about the way the norms are called up. Indeed, the existence of
measures in favor of caregivers does not mean that they benefit from them in practice. In France, measures
created by the patients’ rights and quality of the health care system96 act and the patients’ rights and end-oflife situations97 have not been widely applied. Only 2,5% of the French people have set down advance directives98. The role of the “personne de confiance”99 and the measures in favor of caregivers are largely unknown. According to a survey, dating back from 2008, only 8 % of the caregivers were, at the time, aware of
the “family support leave”, “family solidarity leave” and of the “parental presence leave”100.
In Switzerland, a case study conducted on an old lady concluded to the “regular and important need
of the help from a third party to make most of or all the activities of the daily life in the sense of the administrative practice”101. Even so, the elderly person did not receive the disability allowance, notably because the
“damages in the daily life are rarely analyzed by the nurses from the angle of the right to a disability allowance” 102. This kind of situation suggests that the healthcare professionals and the close caregivers could not
always be well-informed of the existing legal mechanism and that their information could be improved. Indeed, the case study showed that “a disability allowance would enable a demand for supplementary help and
care and would partly avoid the relatives’ exhaustion” 103.
Page
Avis du Conseil fédéral du 8 mars 2013, Disponible sur :
http://www.parlament.ch/f/suche/pages/geschaefte.aspx?gesch_id=20123767, Consulté le 29 décembre 2014.
96
Loi n° 2002-303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé, JORF, 5 mars 2002, p. 4118.
97
Loi n° 2002-370 du 22 avril 2005 relative aux droits des malades et à la fin de vie, JORF, 23 avril 2005, p. 7089.
98
Rapport de présentation et texte de la proposition de loi de MM. Alain CLAEYS et Jean LÉONETTI créant de nouveaux droits en
faveur des malades et des personnes en fin de vie, p. 14.
99
LALANDE F., VEBER O., Op. cit., p. 71.
100
WEBER A., « Données de cadrage concernant l’aide dans les deux enquêtes Handicap-Santé-Ménages et Handicap-SantéAidants (2008) », in BLANC A. (Dir.), Op. cit., p. 88.
101
ANCHISI A., DESPLAND B., « Les proches d’un parent âgé dépendant : le cœur du dispositif de l’aide et des soins à domicile en
suisse », in BLANC A. (Dir.), Op. cit., p. 194.
102
Ibid.
103
Ibid.
12
95
We will therefore have to think about the “mobilization of the norms by the social actors” within a
context of “normative pluralism”104. It seems useful to base our work on field surveys which will allow us to
face up the practices of both the caregivers’ interlocutors (health professionals, territorial authorities, semipublic or community organizations) and the caregivers’ expectations105. It could be interesting to conduct a
survey about the access to legal information related to the measures in favor of caregivers. Hélène Thomas’
competencies will be a strong help to achieve this study.
We will use the “focus group” technique. We will hire a sociologist in each country for 6 weeks. We
will compose 5 groups of 8 to 10 caregivers thanks to various criteria (age/involved in an association/diploma/geographical position/sex). The sociologist will be the moderator and Anaëlle Cappellari will
take notes. The questions will be defined during the first meeting after six months and the moderator will
analyze the data.
II. Program and organisation of the project
Here is the division of the labor among the researchers (A), the schedule (B), and the scientific and
technical justification of the requested resources (C).
A. Division of the labor among the researchers
In order to balance the scientific contributions, the same tasks will be realized in the two countries.
1.
Recruit an administrative
technician or a PhD student (40 % during two
years)
2.
List and read the law,
bills, reports, articles…
concerning
caregivers.
Send them to the team of
lawyers.
3.
Classify the documents
by year.
4.
List the vocabulary used
in the plans, laws, bills,
institutional
records,
articles, advices, case
law… Find the criteria
for the definition of each
term (family caregiver,
close caregiver, relatives...).
List the actors (involved
in the reflections about
caregivers. Explain their
5.
104
Aim pursued
Recruitement
Benefit from an administrative
support
General legal researches
Determine how the concept of
caregivers was implanted within
the public policies and the legal
research. Identify the legal
sources of the caregivers’ rights
and
duties
(formalisées »,
« informalisées »,
« conformalisées »106).
Determine, from a temporal point
of view, how the public policy in
favor of caregivers appeared.
Clarify the concept of close caregivers. Understand the criteria by
which this concept can be defined. Think about the usefulness
of a uniform definition. Should
this concept receive a “real” or
“terminological”
definition?107
Put forward a functional legal
notion.
Understand the role of the actors
involved in the public policy in
favor of the caregivers. Link the
Person in
(France)
charge
Person in charge
(Switzerland)
D. Viriot-Barrial
X
D. Viriot-Barrial
A. Cappellari
D. Viriot-Barrial
A. Cappellari
D. Viriot-Barrial
A. Cappellari
H. Thomas
A.
Cappellari/O.
Guillod
BERNHEIM E., « Le pluralisme normatif appliqué. Une étude de la mobilisation des normes par les acteurs sociaux dans le
champ psychiatrique », Droit et société, 2013/3, n° 85, p. 246.
105
For example : UDAF 49, Pour un renforcement du soutien aux aidants, Pratiques, valeurs et attentes d’aidants familiaux en
Maine et Loire, Avril-Octobre 2009, 79 p.
106
MILLARD É., Théorie générale du droit, Paris, Connaissance du droit, Dalloz, 2006, pp. 112-113.
107
BERGEL J.-L., Théorie générale du droit, Paris, Méthodes du droit, Dalloz, 2012, p. 235.
13
Task
Page
Nr.
Of
the
task
8.
9.
10.
11.
12
13
Find the legal criteria of
the definition of a profession. Determine if these
criteria could be applied
to the caregivers. If not, is
a
professionalization
possible? Appropriate?
List the measures in favor
of the caregivers. Detail
their legal sources and the
political, historical, legal
and sociocultural context
that enabled their adoption.
Determine the people
bound by financial obligations toward the patient. Look for and read
the case law related to the
maintenance obligation.
Identify the awards that
can imply actions against
the maintenance debtors.
Make a table summarizing the determinants
leading to the practical
application of these rules.
Identify the issues of the
help in favor of the caregivers. Find the legal
basis (civil law, constitutional law, fundamental
freedoms, social security
and action law, labor
law…) that could be
invoked to sustain a public policy?
Order the books which
are necessary to make the
research.
Determine what if a legal status is
possible and necessary. If required, make proposals.
S. Lambert
Specific legal researches
Clarify the caregivers’ legal sta- D. Viriot-Barrial
tus.
A. Cappellari
A.
Cappellari/O.
Guillod
Propose, thanks to the subversive
function of comparative law,
innovating measures to sustain the
caregivers. Establish a typology
of the countries.
D. Viriot-Barrial
A.
Cappellari/O.
Guillod
Compare the legal systems. Find
the balance point between family
and national solidarity in each
country. Explain the territorial
disparities. Identify practical
difficulties. Find solutions to
solve them.
S. Lambert
A. Cappellari
Clarify the levers for actions.
D.Viriot-Barrial
A. Cappellari
Benefit from legal reference
works concerning the caregivers.
Books are an indispensable tool
for the lawyers.
Empirical approach
Enrich the legal search thanks to a
field work.
Administrative staff
O. Guillod
Focus groups about the
H. Thomas
A.
caregivers’ knowledge of
/sociologist
Cappellari/sociologist
the legal measures and
expectations.
Constitution of a multidisciplinary expert network and organization of the meetings
Look for other social Have enough knowledge to be H.
Thomas/
D. A. Cappellari
14
7.
territorial skills. Find and fill the
gaps. Identify the levers for action
sustaining our proposals.
Page
6.
role and competences.
Analyze how the public
policy is getting developed.
List the legal text related
to the caregivers’ support
to their dependent relative. Find how the caregivers’ action is coordinated with the other relatives’, the professionals’
and the patients’ prerogatives.
sciences articles.
able to discuss with the other
social sciences’ experts.
Viriot-Barrial
14
Summarize and popularize the legal research.
Make sure that the other social
sciences’ experts have enough
knowledge to discuss with the
lawyers.
D. Viriot-Barrial/H.
Thomas/S. Lambert
A. Cappellari
15
Thanks to the list of the
actors implied in the
reflection related to the
caregivers, choose a leading figure in each country. The criteria to design
the experts will be their
availability and the relevance of their action
concerning caregivers.
Send a letter to the foreseen experts in order to
explain them the multidisciplinary
approach
(article, meetings, and
symposium). Ask them to
send to the scientific
coordinator a list of the
relevant issues.
Send the letters and transfer the answers.
Gather the issues identified by the experts and
make a comparative
working document.
Logistic organization of
the first meeting (take
contact with the contributors, bookings, coffee
break, lunch, booking of
the working room, purchase of a handheld recorder, writing pads,
pens, welcome of the
participants…)
Chair and summarize the
meeting. List the issues
that will be studied. Remind the editorial rules
and dead-lines.
Send the meeting’s report
to the experts.
Write academic articles
Relay the articles to the
whole research team.
the first meeting (take
contact with the contributors, bookings, coffee
break, lunch, booking of
the working room, purchase of a handheld recorder, writing pads,
pens, welcome of the
Constitute a multidisciplinary
network and benefit from the
other specialists’ knowledge and
expertise.
D. Viriot-Barrial
A.
Cappellari/O.
Guillod.
Get in touch with the foreseen
experts.
D. Viriot-Barrial
O. Guillod
Get in touch with the foreseen
experts.
Prepare the work of the first meeting.
X
D. Viriot-Barrial
A. Cappellari
Ensure a favorable research environment.
Administrative staff.
X
Coordinate the work.
D. Viriot-Barrial
A. Cappellari/
Guillod
Convey the information.
X
Deepen the research.
Convey the information.
Experts
Experts
X
Ensure a favorable research environment.
X
18
19
20
21
22
23
24
O.
15
17
Page
16
25
26
27
28
29
participants…)
Read the experts’ articles
and find comparison axes
which will be discussed
during the second meeting.
Chair and summarize the
second meeting. List the
comparison axes. Remind
the updating rules and
dead-lines.
Compare the laws and
make proposals to translate the cross-disciplinary
reflections.
Prepare
work
the
multidisciplinary
D. Viriot-Barrial/ H.
Thomas/S. Lambert
A.
Cappellari/O.
Guillod
Coordinate the work.
D. Viriot-Barrial
A. Cappellari
Help the public authorities to
regulate the caregivers’ issues.
Facilitate the institutions and
caregivers’ involvement.
D. Viriot-Barrial/ H.
Thomas/S. Lambert
A.
Cappellari/O.
Guillod
Organization of the symposium
Ensure a favorable research envi- D. Viriot-Barrial/ H.
ronment.
Thomas/ S. Lambert/
(list
the
guests)
/administrative staff
the symposium (diffusion
of the information, sending of invitations, contact
with the contributors,
bookings, coffee-break,
lunch, booking of the
conference room, getting
in touch with the communication service, writing pads, pens, welcome
of the participants…)
Get in touch with the
publishing service. Publication of the proceedings
of the symposium.
Disseminate the scientific findings
A.
Cappellari/O.
Guillod
D.
ViriotBarrial/administrative
staff
A. Cappellari / O.
Guillod
B. Schedule of tasks
Month
0
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
Task
X X X X X X X X X X X X X
X X X X X X X X X X X X X X X X X
X X X X X X X X X X X X X X X X X
X X X X X X X
X
X X X X X X X
X
16
Specific
legal
research
Empirical
approach
Constitution of the
crossdisciplinary
network
First
meeting
Writing of
articles
Second
meeting
X
Page
Recruitment
General
legal
research
X X X X X X X X X X X
Comparison and
preparation of the
symposium
Symposium
Publication of the
proceedings of the
symposium
X
X
C. Technical and scientific justification of the requested funds
We have balanced the contribution of the two countries. Each country will pay its research team. The
cost of the meetings, symposium and publication are shared between the two countries. France will pay for
the meetings organized in Aix-en-Provence and Switzerland will fund the symposium that will take place in
Neuchâtel. The salaries differences between France and Switzerland explain why the requested funds to the
NRA and the SNSF are different.
1. French costs
The French costs include the salary and social charges for a PhD or technician hired to achieve administrative tasks (40 %, during 2 years, ± 24 K€), the two meetings which will take place in Aix-enProvence (± 10 K€), equipment and consumables (± 4 K€) the French team travel costs to constitute an interdisciplinary network (± 3 K€), and the French Professors’ travel to the colloquium and the publication (± 4
K€). It doesn’t include management fees and indirect costs. Two professors and a Senior lecturer will respectively grant 50, 10 and 10 % of their research time. The cost of their work is given as an indication.
2. Swiss costs
The Swiss costs include Anaëlle Cappellari’s wage. She will be hired as a scientific collaborator
(100%) in the Institute of health law. This recruitment is due to the particular skills that she has acquired, in
French-Swiss comparative law, during her PhD. Professor O. Guillod is a permanent employee of the University of Neuchâtel. The cost of his work is given as an indication (5% of his research time). The Swiss
costs also include the Swiss team’s travel costs, equipments and consumables, the symposium’s cost and the
digital publication of the proceedings of the symposium.
Switzerland (details)
Switzerland
(cost CHF)
France (details)
France
(cost €)
Team’s wages and social security costs
46 200
10 000
17
Anaëlle Cappellari’s social
charges (22%)
46 200 CHF
Olivier Guillod’s wages (5
% of the research time,
provided for information
10 000 CHF / year = 20 000
purposes only)
CHF / 2 years
210 000
Page
Anaëlle Cappellari’s wage,
as a scientific collaborator 105 000 CHF/ year = 210 000
(100 % of the search time) CHF / 2 years
Dominique ViriotBarrial’s wages including
social charges (50% of the
research time, provided for
information purposes
only)
Sophie Lambert’s wages
including social charges
(10 % of the research time,
purposes only)
Hélène Thomas’ wages
(10 % of the research time,
purposes only)
PhD or technician’s wages
(40 % of his time during
two years)
98 844,57
98844,57
18957,37
18957,37
13775,60
13775,60
2444X0,40X24 = 23462,4 €
23 462,40
- 1 travel to Paris = 300 €
- 1 hotel night in Paris = 100
€
- 2 meals = 15,25€ X 2 = 30,5
779 €
430,5
Travel costs (to get in
touch with nurses and
doctors)
- 2 travels : to Geneva (80
CHF) and Lausanne (52 CHF)
= 132 CHF
- 2 hotel nights (150X2 CHF)
= 300 CHF
- 4 meals (25X4 CHF) = 100
CHF
- 1 travel to Paris = 300€
- 1 hotel night in Paris = 100
€
- 2 meals = 15, 25 X 2 = 30,5
€
532 - 1 travel to Marseille 15 €
445,5
touch with the associations)
- 7 travels : 1 to Yverdon (30
CHF), 2 to Lausanne (52 CHF
X 2 = 104 CHF) ; 3 to Geneva
(80 CHF X 3 = 240 CHF), 1
to Neuchâtel (on site)
- 5 hotel nights (150 CHF
X5=750 CHF)
- 10 meals (25CHF X 10 =
250 CHF)
- 2 travels to Paris (300 X 2
= 600 €)
- 2 hotel nights in Paris 100
X 2 = 200 € ; - 4 meals = 15,
25 X 4 = 61 €
- 5 travels in the Bouches du
Rhône : 1 to Avignon (60€),
1 to Toulon (40€), 3 to Mar1174 seille (15X3 = 75 €)
1006 €
Page
touch with the politicians)
- 3 travels : to Geneva (80
CHF), Lausanne (52 CHF)
and Fribourg (A/R = 47 CHF)
= 179 CHF
- 3 hotel nights (150X3) = 450
CHF
- 6 meals = (25X6) = 150
CHF
18
Costs during the first six month of the research
Telephone expenses, internet, writing paper (to
get in touch with the economists and the sociologist)
Running costs
0 Running costs
0
Printing costs (to print the
documents which are
necessary for the research)
Running costs
0 Running costs
0
Computer equipment
1 laptop computer = 449 CHF
- 1 laptop computer (400 €)
449 - 1 laser printer (100 €)
500
Books
24 books which cost approximately 120 CHF / 2 years =
120X24 = 2880 CHF
24 books which cost approx2880 imately 80 € / 2 years
1920
Experts first meeting (after 6 months, in Aix-en-Provence)
Travel costs (2 legal researchers from Switzerland)
120 € X 4 = 480 € = 578,3
CHF
578,3
Travel costs (5 French
experts)
Paris/Aix-en-Provence = 300
€ X 5 =1500 €
1500
Travel costs (5 Swiss
experts)
Switzerland/France = 240 €
X 5 = 1200 €
1200
Hotel nights for the 10
experts
120 € /night 120 X 10 = 1200
€
1200
Hotel nights for the 2 legal
researchers
150 X 2 = 300 CHF
300
Coffee break (for 15)
6 € / person
15 meal trays
15,25 € X 15 = 228, 75 €
Dictation machine
100 CHF
100
Writing pads and pens
90
228,75
90 €
- writing pads = 15 x 4 € =
225 €
- Pens = included in the running costs
90
225
3000€
3000
12616,10
12616,10
Experts second meeting (after 12 months, in Aix-en-Provence)
Page
Sociologists’ wages (6
weeks)
19
Focus group
Travel costs (2 legal researchers from Switzerland)
120 € X 4 = 480 € = 578,3
CHF
578,3
Travel costs (5 French
experts)
Paris/Aix-en-Provence = 300
€ X 5 =1500 €
1500
Travel costs (5 Swiss
experts)
Switzerland/France = 240 €
X 5 = 1200 €
1200
Hotel nights for the 10
experts
120 € /night 120 X 10 = 1200
€
1200
Hotel nights for the 2 legal
researchers
150 X 2 = 300 CHF
300
Coffee break (for 15)
6 € / person
15 meal trays
15,25 € X 15 = 228, 75 €
- writing pads = 15 x 4 € =
225 €
- Pens = included in the
runnig costs
Writing pads and pens
90
228,75
225 €
Symposium (after 24 months, in Neuchâtel)
10 experts’ travel costs
5 French experts by plane (5
X 300 CHF = 1500) ; 5 Swiss
experts by train (5 X 80 CHF
= 400 CHF)
0
1900
3 French legal researchers
2 hotel nights for the 20
French and Swiss experts
240 € X 3 = 720 €
150 CHF / night = 150 CHF x
20 = 3000 CHF
3000
230 CHF / night = 230 X 6 =
690 CHF, soit 572,61 € pour
une nuit, donc 1145 € 22
pour deux nuits
2 hotel nights for the 3
French legal researchers
Coffee break (100 personne / 2 days)
((15 X7CHF) X 2= 210 CHF)
It only includes the experts
and legal searchers’ coffee
break. The participants’ coffee
pause will be paid thanks to
the registration fees.
720
1145, 22
210
20
Running costs
Page
Booking (conference room
and video-projector)
Buffet lunch (2 days)
((50 CHF X15) X 2=1500
CHF) It only includes the
experts and legal searchers’
buffet lunch. The participants’
buffet lunch will be paid
thanks to the registration fees.
1500
Posters, flyers, pens, notepads…
Running costs
Evening meal for the experts and legal researchers
(2 days)
(50 X15)X2 = 1500 CHF
1500
Publication costs
3000
3000 CHF
0
2 500 €
Scientific monitoring
Attend the project’s kick
off meeting ; participation
in at least one intermediate
project review ; participation in at least one or two
ANR symposia
2500
1000€ 1000
D. The research team
Last name
First name
Current
position
Role
and
contribution
to the project
National
coordinator
Cf division
of the labor
France
CDS EA 901,
AMU
ViriotBarrial
Dominique
Professor
France
LTD EA 892,
AMU
Thomas
Hélène
Professor
Partner
Cf division
of the labor
France
GREDIAUC
EA 3786, AMU
Lambert
Sophie
MCF
Partner
Cf division
of the labor
Switzerland
IDS, UNINE
Guillod
Olivier
Professor
National
coordinator
Cf division
of the labor
Switzerland
IDS, UNINE
Cappellari
Anaëlle
PhD
Partner
Cf division
of the labor
Involvement
in the project
50%
research time
/ 2 years =
18
person.months
10 % research time
/ 2 years =
3,6
person.months
10 % research time
/ 2 years =
3,6
person.months
5 % research time
/ 2 years =
1,2
person.months
100
%
research
time / 2
years = 24
person.months
Requested
funding to
the ANR
(euros)
0
Requested
funding to
the FNS
(euros)
0
0
0
256200
CHF
=
246 618 €
21
Organisation
Page
Country
1. A collaborative research carried out by AMU (France) and UNINE (Switzerland)
A small research team – Carrying out this project requires skills in the field of comparative law and
a strong interest in the relationships between health law, social law and family ties. This research is a follow
up from a thesis of comparative French-Swiss law dedicated to the influence of health law on
extrapatrimonial family law. This thesis was written by Anaëlle CAPPELLARI and was supervised by Professors Olivier GUILLOD (Institute of health law, University of Neuchâtel, Switzerland) and Dominique
VIRIOT-BARRIAL (Center of social law, Aix-Marseille University, France). The present project aims to
complete this research which had dismissed the issue of family caregivers because of its strong implications
in the pecuniary field.
The collaborative research will be carried out by the institute of health law of the University of Neuchâtel and the center of social law of the University of Aix-Marseille. It falls within a dynamic characterized
by complementarity. The two main laboratories involved in this project can usefully enhance each other.
Indeed, the legal recognition of close caregivers’ role cannot reasonably be studied by separating the sanitary
and social fields. The alliance between the institute of health law and the center of social law will permit a
decompartmentalized and integrated approach, embracing, in a comparative perspective, health and social
policies. Moreover, the research will be coordinated by researchers who are used to working together, as a
doctoral thesis has constituted the first step of an international collaborative research.
2. The Aix-Marseille team
•
•
•
•
•
•
•
•
In particular, the latter wrote:
« Les socialistes français : vers la société du soin mutuel (Care) ? », in Cités, « Socialismes : y revenir ? » n° 43, Octobre 2010, pp. 67-87.
« Les vieillards en démocratie : des citoyens palliatifs », in Sylvie Carbonnelle (ed.), Penser les
vieillesses. Regards sociologiques et anthropologiques sur l’avancée en âge, Paris Seli Arslan, Avril
2010, pp. 53-72.
« Vulnérabilité, fragilité, précarité, résilience, etc. De l’usage et de la traduction de notions éponges
en sciences de l’homme et de la vie. », TERRA-Ed., Coll. "Esquisses", Février 2008, Disponible
sur : article697.html
« Le métier de vieillard », in Politix, n°72, « Politique(s) et vieillissement », 2005, pp. 33-55, Disponible sur http://www.cairn.info/revue-politix...
« Perceptions et réactions à la maltraitance des personnes âgées, Une enquête qualitative », (avec C.
Scodellaro et D. Dupré-Levêque), Études et Résultats, Drees-Mire, n° 370, Janvier, 12 p., Disponible
en février 2005 sur www.sante.gouv.fr/drees/etude-resultat/er-pdf/er370.pdf.
« La personne âgée peut-elle fragiliser le réseau qui la soutient », in Gérontologie et sociétés, n° 109,
juin, Fragilités, pp. 165 à 182, Disponible sur http://www.cairn.info/revue-geronto...
« Les personnes âgées dépendantes entre hospitalisation et hospicialisation », in Colloque international, L’hospitalité, desseins et dérives, Disponible sur http://semioweb.msh-paris.fr/AAR/200.
« Décision d’institutionnalisation de la personne âgée et entrée dans la dépendance : le poids de
l’intime conviction des professionnels », in Revue Laennec, Médecine, santé, éthique, n° 3-4,
« Vieillir et vivre », Mars 1998, pp. 13 à 16.
« Une maltraitance ordinaire. Perceptions de la maltraitance par les personnes âgées en institution et
au et au domicile », (avec C. Scodellaro, D. Dupré-Levêque), Rapport pour le secrétariat d’État aux
personnes âgées, DREES, Mars 2004, 131 p.
Page
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22
The French team will be comprised of Dominique VIRIOT-BARRIAL, Sophie LAMBERT and Hélène THOMAS. Dominique VIRIOT-BARRIAL will coordinate the research (Professor, CDS, EA 901). Her
research in the center of social law is dedicated to social and family policies. She is interested in the aging
problems (D. VIRIOT BARRIAL, « Dignité », Répertoire Dalloz) and the innovative tools to manage the
sanitarian risks (D. VIRIOT-BARRIAL (Dir.), Les catastrophes sanitaires, Bordeaux, LEH, 2013). She will
work with Sophie LAMBERT (MCF AMU – GREDIAUC EA 3786) who is competent in adult’s protection
and Hélène THOMAS (Professor of political science AMU – laboratory of theory of law, LTD EA 892) who
is specialized in public social policies in favor of dependent people.
•
Encadrement et coordination du rapport d’étude sur « Les refus de prestation spécifique dépendance : le fardeau des aidants et des personnes âgées dépendantes », Ministère de l’Emploi et de la solidarité, septembre, 120 p. avec G. Magnier et A. Lynch (financement DREES-MiRe, 120 entretiens).
3. The Swiss team
The Swiss team will be comprised of Anaëlle CAPPELLARI (A. CAPPELLARI,
L’influence du droit de la santé sur le droit extrapatrimonial de la famille. Repenser le droit français à la lumière du droit suisse, Aix-Marseille/Neuchâtel,Thèse en droit privé, Cotutelle,
AMU/UNINE, 2014) and Olivier GUILLOD. Anaëlle CAPPELLARI will be recruited as a fulltime scientific collaborator in the institute of health law. She will benefit from Olivier GUILLOD’s
support as a professor of both health law and family law who will be the scientific coordinator (in
the first proposal submitted in november, Anaëlle Cappellari was the Swiss coordinator; Olivier
GUILLOD has become the scientific coordinator because, according to the SNSF, only permanent
staff can be main applicant).
3. Strategy for technology transfer, protection and use of the results; overall impact of the
proposal
Effect of the research on the partners – A consortium Agreement will be signed by AMU and
UNINE via the Research divisions in order to determine the strategy for protection and use of the results.
Promotion of the research’s results – The organization of an international cross-disciplinary and
open to the public (particularly the caregivers) symposium will improve the understanding of this societal
topic. The symposium’s visibility will be ensured by its announcement in several periodicals (Dalloz, Revue
Suisse de droit de la santé…) and websites (center of social law, institute of health law, science and technology network, French association for health law…) and by its diffusion within the experts’ networks. The
research will be promoted thanks to the publication of the proceedings of the symposium which will constitute a large scale comparative study. The “knowledge of the law” function of comparative law will enhance
the analysis of the construction of social public policies.
Effect of the research on the public authorities – Beyond this first function, the subversive function of comparative law will enable us to make proposals that could be used by public authorities. It will
support the sustainability of the health and social insurances systems. These proposals will be available
thanks to the publication of the proceedings of the symposium. A summary list will be e-mailed to the different institutions in charge of this issue in both countries. A flyer (PDF format) will also be sent to introduce
the book.
Effect of the research on the professionals – Our research finally aims at promoting the exchanges
between lawyers and other professionals facing the question of the triangular relationship with the caregiver
and the patient. A field study combing “empirical” and “legal” aspects has shown some gaps between the
legally recognized rights and the way they are turned into practice. To t ake just one example, it seems that
the patient’s relatives are often informed of the patient’s disease, although the patient himself is not informed108. It could therefore be necessary to improve the information. The popularization of the legal research made in order to prepare the meetings could be used as a good practice guide by the others professionals. The dissemination of the results will pass through the experts’ networks and a website in which a
good-practice guide and an introductory booklet will be available.
108
CHOQUET J.-L., CROFF B., MAUDUIT M., ESPESSON VERGEAT B., MORET-BAILLY J. SAYN I., Respect des libertés,
besoins des aidants et protection juridique, 2003, halshs-01063885, p. 91.
Page
23
Effect of the research on the caregivers – We also plan to create a caregivers’ network and a website dedicated to legal information and legal watch.
4. Bibliographical references
I. France
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•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
ACADÉMIE D’ÉDUCATION ET DES SCIENCES SOCIALES, La famille, Un atout pour la société, Paris, François-Xavier de Guibert, 2013, 363 p.
ANDRIEU S. (Dir.), Les aidants familiaux et professionnels : du constat à l'action, Paris, Serdi, 2002, 167 p.
ARRONDEL L., GRANGE C., MASSON A., Transferts publics, solidarités familiales et mutations patrimoniales
entre générations, Nantes, Maison des sciences et de l’homme, 2003, 70 p.
ATTIAS-DONFUT C. (Dir.), Les solidarités entre générations : vieillesse, familles, État, Paris, Essais et recherches, Nathan, 1995, 352 p.
AUDIER S., La pensée solidariste, Aux sources du modèle social républicain, Paris, Le lien social, PUF, 2010, 340
p.
BINET J.-R. (Dir.), Droit et vieillissement de la personne, Paris, Colloques et débats, LexisNexis, Litec, 2008, 245
p.
BLANC A. (Dir.), Les Aidants familiaux, Grenoble, Collection handicap vieillissement société, PUG, 2010, 255 p.
BONVALET C., OGG J., Enquêtes sur l’entraide familiale en Europe, Paris, Méthodes et savoirs, INED, The
young foundation, 2006, 264 p.
BOUISSON J., BRISSET C., TOURIER I., VION C. (Dir.), Vieillissement et vieillesse, vulnérabilité et ressources : regards croisés, Pessac, Maison des sciences de l’homme d’Aquitaine, 2011, 258 p.
BOUJEKA A., Les politiques de protection des personnes handicapées en Europe et dans le monde, Bruxelles,
Droit et justice, Nemesis, Bruylant, 2009, 364 p
BRAMI G., Les droits des personnes âgées hébergées, Paris, Le point sur, Berger-Levrault, 2007, 223 p.
CAPARROS E. (Dir.), L’obligation alimentaire, Étude de droit interne comparé, Tome III, Paris, Institut de recherches comparatives sur les institutions et le droit, Éditions du CNRS, 1983, 330 p.
CHOQUET L.-H., SAYN I. (Dir.), Obligation alimentaire et solidarités familiales, Entre droit civil, protection
sociale et réalités familiales, Paris, Droit et société, LGDJ, 2000, 333 p.
CRESSON G., MEBTOUL M. (Dir.), Famille et santé, Rennes, Recherche santé social, Presses de l’EHESP, 2010,
301 p.
DARNAUD T., De la maltraitance à la relation de traitance : un autre regard sur la relation d'aide, Lyon, Comprendre les personnes l’essentiel, Chronique sociale, 2012, 92 p.
DEBORDEAUX D., STROBEL P., Les solidarités familiales en questions : entraide et transmission, Paris, Droit
et société, LGDJ, 2002, 267 p.
DECATOIRE N., La maladie d’Alzheimer à domicile, Paris, Tiens-moi la main, Éditions épidaure, 2013, 431 p.
DREYER P., Handicap et domicile : interdépendance et négociations, Lyon, Comprendre les personnes,
L’essentiel, Chronique sociale, 2011, 143 p.
DUVIGNARD J., La solidarité, Liens de sang et liens de raison, Paris, Idée forces, Fayard, 1986, 232 p.
FIOR S., L'aide aux aidants : approche internationale : vivre avec la maladie d'Alzheimer, Paris, Fondation Médéric Alzeimer, 2003, 208 p.
FRAGNIÈRE J.-P., Solidarités entre générations, Lausanne, Réalités sociales, 2010, 144 p.
FRICOTTÉ L., Droit des personnes handicapées, Rueil Malmaison, Wolters Kluwer, 2014, 395 p.
FULCHIRON H., Les solidarités entre générations, Bruxelles, Bruylant, 2013, 1149 p.
GROLLEMUND P., Droits et recours individuels des personnes handicapées, Paris, Juriséditions, Dalloz, 2012,
207 p.
GUILLAUMOT P. (Dir.), Le sujet âgé, ses proches et ses soignants, Toulouse, Erès, 2012, 158 p.
HAMONET C., Les personnes en situation de handicap, Paris, Que sais-je ?, PUF, 2012, 128 p.
HARDY J.-P., LHUILLIER J.-M., THÉVENET A., L’aide sociale aujourd’hui, Paris, Référence actions sociales,
ESF, 2010, 479 p.
HELFTER C., L'aide aux aidants : l'apport de la recherche médico-sociale : Actes du colloque de la Fondation
Médéric Alzheimer, 19 septembre 2003, Paris, Fondation Médéric Alzeimer, 2003, 159 p.
HENESSY P. (Dir.), Protéger les personnes âgées dépendantes, Paris, Études de politique sociale, OCDE, 1994,
155 p.
HENRARD J.-C., ANKRI J., Vieillissement, grand âge et santé publique, Rennes, ENSP, 2003, 277 p.
HENRARD J.-C., La perte d’autonomie : un nouvel enjeu de société, Paris, L’Harmattan, 2012, 145 p.
HENRARD J.-C., La perte d’autonomie, Un nouvel enjeu de société, Paris, Questions contemporaines,
L’Harmattan, 2012, 145 p.
HENRARD J.-C., Vieillissement et santé, Paris, Observatoire franco-québecois de la santé et de la solidarité, 2002,
175 p.
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A. Books:
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HÉTU J.-L., Avancer en âge : guide d'accompagnement pour le maintien à domicile : pour les aînés et les proches
aidants, Longueuil, Groupéditions, 2008, 158 p.
HILBERER-ROUZIC P., L’obligation alimentaire dans le cadre de l’action sociale, Paris, Droit, mode d’emploi,
MB éditions, 2002, 72 p.
JOUBLIN H., La condition du proche de la personne malade, 10 études de proximologie, Montreuil, Aux lieux
d’être, 2007, 188 p.
JOUBLIN H., Réinventer la solidarité de proximité. Manifeste de proximologie, Paris, Albin Michel, 2005, 180 p.
LE BORGNE-UGUEN F., REBOURG M. (Dir.), L’entraide familiale : régulations juridiques et sociales, Rennes,
PUR, 2012, 326 p.
MALLET É., Enfant handicapé et protection juridique, Paris, droit et professionnels, LexisNexis, 2011, 722 p.
MANSON S., Droit public et handicap, Paris, Thèmes et commentaires, Dalloz, 2009, 343 p.
MARCEL D., La solidarité comme contrat et comme éthique, Genève, Institut international d’études sociales,
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MASSON A., Des liens et des transferts entre générations, Paris, EHESS, 2009, 460 p.
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PAQUET M., Les professionnels et les familles dans le soutien aux personnes âgées dépendantes : on vous appellera quand on aura besoin d'aide, Paris, L’Harmattan, 2014, 270 p.
PÉPIN L., Disposition des aidants familiaux, Berlin, Éditions universitaires européennes, 2010, 138 p.
PITROU A., La famille de nos jours et les solidarités familiales relais et obstacles pour la promotion de nouvelles
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SINGLY F. (De) (Dir.), La famille, L’état des savoirs, Paris, La découverte, 1991, 447 p.
THIBAULT-WANQUET P., Les aidants naturels auprès de l’adulte à l’hôpital, Paris, Masson, 2008, 107 p.
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AN, Rapport fait au nom de la commission des affaires sociales sur le projet de loi, relatif à l’adaptation de la
société au vieillissement, Par Mme Martine Pinville, Enregistré à la Présidence de l’Assemblée nationale le 17
juillet 2014, 574 p.
CHOQUET L.-H., CROFF B., MAUDUIT M., ESPESSON B., MORET-BAILLY J., SAYN I.. Respect des libertés, besoins des aidants et protection juridique des personnes atteintes de la maladie d'Alzheimer, Rapport, Fondation Médéric-Alzheimer, B. Croff Conseil & Associés, CERCRID, 2003, 136 p.
CNSA, Accompagner les proches aidants, ces acteurs « invisibles », 2011, 17 avril 2012, 101 p.
COFACE, Charte européenne de l’aidant familial, Bruxelles, COFACE, 2009, 4 p.
COLOMBO F. et al., Besoin d’aide ? La prestation de services et le financement de la dépendance, Études de
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CSA, Les personnes vulnérables, Sondage, Avril 2006, 94 p.
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B. Reports and advices:
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•
•
•
•
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JOËL M.-È., L’encadrement des solidarités familiales intergénérationnelles ascendantes, Paris, GIP, 2003, 179 p.
LA MAISONNEUVE C. (De), Dépenses publiques de soins de santé et de soins de longue durée: une nouvelle
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des Communautés européennes, 1994, 130 p.
MINISTÈRE DES AFFAIRES SOCIALES ET DE LA SANTÉ, Aidant familial, Le guide de référence, Paris,
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nouveaux droits en faveur des malades et des personnes en fin de vie, 43 p.
REBOURG M., Le recours des établissements publics de santé contre les débiteurs alimentaires, Rapport de recherche financé par le GIP « mission droit et justice et par la MIRE/DREES, 2003, 251 p.
SERVERIN E., La mise en œuvre de l’obligation alimentaire familiale, Définitions de la solidarité familiale par le
juge et l’administrateur, Lyon, IEJ, 1983, 185 p.
SICARD D., Penser solidairement la fin de vie – commission de réflexion sur la fin de vie en France, Paris, Collection des rapports officiels, La documentation française, 2012, 282 p.
UDAF 49, Pour un renforcement du soutien aux aidants, Pratiques, valeurs et attentes d’aidants familiaux en
Maine et Loire, Avril-Octobre 2009, 79 p.
WEBER F., Reconnaître les aidants familiaux, Noisy-le-Gand, Centre d’étude de l’emploi, 2006, 4 p.
C. Unpublished dissertations, thesis:
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ALFANDARI É., Le droit aux aliments en droit privé et en droit public, Unification des notions et des contentieux
de l’obligation alimentaire et de l’aide sociale, Poitiers, Thèse en droit, 1958, 252 p.
ORTALDA L., Le système d’entraide au sein de la parenté : entre logiques sociales et pratiques familiales, Paris
X Nanterre, Thèse en sociologie et démographie sociale, 2001, 572 p.
PHILIPPE C., Le devoir de secours et d’assistance entre époux, Essais sur l’entraide conjugale, Paris, Bibliothèque de droit privé, LGDJ, 1981, 348 p.
GANGI F., Regards sur la personne handicapée à la lumière du droit contemporain de la famille, Aix-Marseille,
Thèse en droit, 2007, 577 p.
PAUGAM S. (Dir.), Repenser la solidarité, Paris, PUF, 2011, 980 p.
LACOUR C., Vieillesse et vulnérabilité, Aix-Marseille, Collection du centre Pierre Kayser, PUAM, 2007, 569 p.
OUEDRAOGO R. W., La notion de devoir en droit de la famille, Bruxelles, Bruylant, 2014, 536 p.
RIALLE V., Technologies et alzheimer : appréciation de la faisabilité de la mise en place de technologies innovantes pour assister les aidants familiaux et pallier les pathologies de type Alzheimer, Paris, Thèse en éthique,
2007, 241 p.
VIGIER V., L’embryon citoyen : formation et participation, Bordeaux, Les cahiers de droit de la santé du sud-est,
Les études hospitalières, LEH, 2010, 203 p.
D. Journals:
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« La famille : entre production de santé et consommation de soins », Recherches familiales, 2006, n° 3.
« Les majeurs protégés », Recherches familiales, 2004, n° 1.
« Les solidarités entre générations », Dr. fam., 2011 ; n° 7/8.
CALVAT T. (Dir.), « Aide familiale. Histoires de famille ou affaire d’État », Réciproques, Revue de proximologie,
2009, n° 1.
MINONZIO J., PAGIS J., « Entraide familiale et solidarités entre les générations », , Problèmes politiques et sociaux, 2009, n° 962/963.
STROBEL P., « Solidarités familiales », Revue française des affaires sociales, 2005, n° 4.
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« Allocation fin de vie : le décret d’application vient d’être publié », RLDC, Mars 2011, p. 44.
« Création de l’allocation pour l’accompagnement d’une personne en fin de vie », Semaine sociale Lamy, 2010, n°
1435-1436, p. 2.
ALFANDARI É., « Le recouvrement des frais hospitaliers sur les débiteurs d’aliments, in Études offertes à JeanMarie Auby, Paris, Dalloz, 1992, p. 674.
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E. Articles:
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ASTAIX A., « Une allocation pour l’accompagnement d’une personne en fin de vie », Dalloz actualité, 19 janvier
2010.
BADEL M., GILLES A.-M., LABORDE J.-P., LACOSTE V., SUBRENAT M., « Référence au lien familial et
accès au droits sociaux », Recherches et prévisions, Septembre 2003, n° 73, p. 25.
BELANGER M., « Les actions d’appui en faveur des personnes âgées », RDSS, 1979, IV, p. 18.
BERNHEIM E., « Le pluralisme normatif appliqué. Une étude de la mobilisation des normes par les acteurs
sociaux dans le champ psychiatrique », Droit et société, 2013/3, n° 85, p. 246.
BEVIERE-BOYER B., « Le proche du patient, un statut complexe, des améliorations possibles», Revue droit et
santé, 2011, p. 230.
BOUCHARD V., « De la solidarité en ligne collatérale », LPA, 30 août 2001, n° 173, p. 4.
BOULMIER D., « Congé de solidarité familiale et allocation d’accompagnement en fin de vie : des avancées mais
doit mieux faire ! », RDSS, 2010, p. 720.
BUNGENER M., « Une gestion des corps malades et vieillissants. Le transfert domestiques des activités de
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CHAUVIÈRE M., MESSU M., « Les apories de la solidarité familiale. Contribution à la sociologie des configurations de justice entre les familles et l’État, dans le cas français », Sociologie du travail, Juillet-Septembre 2003,
Vol. 45, n° 3, p. 327,
COELHO J., « La communication d’informations de santé aux tiers », AJ famille, 2008, p. 204.
DÉCHAUX J.-H., « Les échanges économiques au sein de la parentèle », Sociologie du travail, XXXXII, 1/90, p.
73.
DÉCHAUX J.-H., « Les solidarités familiales », in S. PAUGAM (Dir.), L’exclusion : l’état des savoirs, Textes à
l’appui, Éditions de la découverte, 1996, p. 45.
DEMICHEL F., « Le droit public, un droit de solidarité pour la santé », RGDM, Septembre 2013, n° 48, p. 201.
JALUZOT B., « Méthodologie du droit comparé, bilan et perspectives », RIDC, 2005, Vol. 57, n° 1, p. 29.
KESSLER F., GÉA F., « Le principe de subsidiarité dans le droit de l’aide sociale, Quelques éléments de réflexion », in Drôle(s) de droit(s), Mélanges en l’honneur de Élie Alfandari, Paris, Dalloz, 1999, p. 303.
LAPORTHE C., « Les aidants familiaux revendiquent un véritable statut », Gérontologie et Société, 4/2005, n°
115, p. 201.
LAVOIE J.-P., GUBERMAN N., «Le partenariat professionnel – famille dans les soins aux personnes âgées. Un
enjeu de reconnaissance», Lien social et politiques, 2009, n° 62, p. 137.
LUZU F., « Le fonds familial : pour la création d’un outil de solidarité familiale entre les générations… », Droit et
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MUIR-WATT H., « La fonction subversive du droit comparé », RIDC, 2000, Vol. 52, n° 3, p. 503.
POULIQUEN E., « Accompagnement d’une personne en fin de vie : une allocation sera versée », RLDC, Avril
2010, p. 43.
PRÉVOST J.-B., « Le corps familial blessé », Gaz. Pal., 19 mars 2011, n° 78, p. 16.
RIOT C., « Solidarité et dépendance : quel avenir ? », LPA, 27 janvier 2011, n° 19, p. 3.
ROUAST A., « La sécurité sociale et le droit de la famille », in Le droit privé français au milieu du XXe siècle,
Études offertes à Georges Ripert, Tome 1, Paris, LGDJ, 1950, p. 346.
SAYN I., MAUDUIT M., « La protection juridique, un outil pour les aidants des personnes atteintes de la maladie
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SAYN I., Solidarité familiale et solidarité collective : la place des aidants familiaux, Revue Gérontologie et Société,
Juin 1999, n° 89, p. 11.
SAVATIER R., « Peut-on récupérer en droit sur ses frères et sœurs les soins et impenses faits pour ses parents »,
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SCELLES R., « Dommage corporel et fratrie », Gaz. Pal., 19 mars 2011, n° 78, p. 20.
TARDY V., « Les fraternités intrafamiliales et le droit », LPA, 2 novembre 1999, n° 218, p. 7.
II. Switzerland
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BOLTSHAUSER M., ZUBER HOFER I., HARTMANN P., SCHILLIGER D., MENGIS A., Les droits de mon
enfant, Guide du droit des assurances sociales pour les parents d’enfants avec handicap, Bienne, Procap, 2011,
182 p.
DUPONT A.-S., KAHIL-WOLFF B., DUNAND J.-P., WYLER R., Droit social, Volume II, Droit des assurances
sociales, Bâle, Helbing et Lichtenhahn, 2014, 1007 p.
FRÉSARD-FELLAY G., KAHIL-WOLFF B., PERRENOUD S., Droit suisse de la sécurité sociale, Volume 2,
Berne, Précis de droit, Stampfli, 2015, 664 p.
GNAEGI P., Histoire et structure des assurances sociales en Suisse, Zurich, Schulthess, 2011, 302 p.
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A. Books:
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GOLAY RAMEL M., Les proches aidants : aider un proche malade et/ou âgé, Saint-Julien-en-Genevois, GenèveBernex, Les maxi pratiques, Jouvence, 2011, 125 p.
GREBER P.-Y., KAHIL-WOLFF B., MOLO R., FRÉSARD-FELLAY G., Droit suisse de la sécurité sociale,
Berne, Stampfli, 2010, 596 p.
HÖPFLINGER F., BAYER-OGLESBY L., ZUMBRUNN A., La dépendance des personnes âgées et les soins de
longue durée, Scénarios actualisés pour la Suisse, Berne, Les cahiers de l’Observatoire suisse de la santé, Hans
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HÖPFLINGER F., HUGENTOBLER V., Les besoins en soins des personnes âgées en Suisse – Prévisions et scénarios pour le 21e siècle, Berne, Les cahiers de l’Observatoire suisse de la santé, Hans Huber, 2003, 88 p.
HÖPFLINGER F., HURGENTOBLER V., Soins familiaux, ambulatoires et stationnaires des personnes âgées en
Suisse, Observations et perspectives, Chêne-Bourg, Médecine et hygiène, 2006, 142 p.
KAHIL-WOLFF B., WYLER R. (Dir.), LAMal : soins à domicile, soins en EMS, Berne, IRAL 31, Stampfli, 2005,
300 p.
KEISER R., Dossier assurances sociales, 2015, Lucerne, Keiser, 2014, 156 p.
KIESER U., RIEMER-KAFKA G., FRÉSARD-FELLAY G., Tables du droit suisse des assurances sociales, Zurich, Schulthess, 68 p.
LIMAT J., Incidence de la LSAFD sur la population des homes dans les districts de la Glâne, de la Gruyère et de
la Sarine, Farvagny, 1996, 239 p.
MASMEJAN, Dette alimentaire, Notions générales et réception dans les cantons de Genève, Vaud et Valais, Zurich, Bâle, Genève, Études, Schulthess, 2002, 133 p.
MONOD-ZORZI S., SEEMATTER-BAGNOUD L., BÜLA C., PELLEGRINI S., JACCARD RUEDIN H., Maladies chroniques et dépendance fonctionnelle des personnes âgées, Neuchâtel, Observatoire suisse de la santé, Document de travail 25, 2007, 206 p.
PELLEGRINI S. et al., Coûts des établissements médico-sociaux et des services d'aide et de soins à domicile :
prévisions à l'horizon 2030, Neuchâtel, Document de travail, Observatoire suisse de la santé, 2006, 41 p.
RAPIN C.-H. (Dir.), Stratégies pour une vieillesse réussie, Genève, Médecine et hygiène, 2004, 288 p.
SANTOS EGGIMAN B. et al., Le maintien à domicile : un défi partagé : une analyse de la collaboration des
Centres médico-sociaux et de l'entourage dans les situations de dépendance fonctionnelle importante, Lausanne,
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SCHUWEY C.., KNÖPFEL C., Nouveau manuel sur la pauvreté en Suisse, Lucerne, Caritas, 2014, 286 p.
SIMEONE I. (Dir.), Le maintien à domicile : quel avenir ? , Genève, Médecine et hygiène, 1988, 264 p.
VAERINI M., Guide pratique du droit de la protection de l’adulte et de l’enfant, Berne, Stampfli, 2015, 300 p.
VALTERIO M., Droit de l’assurance-vieillesse et survivants (AVS) et de l’assurance invalidité (AI), Zurich, Schulthess, 2011, 1022 p.
ZERMATTEN J. (Dir.), Droit des enfants en situation de handicap, Sion, Âge, santé, société, Institut universitaire
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ZEHNDER-HEBLING S., Accompagner et soigner. Un ouvrage spécialisé destiné aux proches et aux amis des
personnes nécessitant des soins, Pro Senectute, 2011, 104 p.
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Avec toi… Un plaidoyer humaniste pour donner suite au congrès international 2011, « Avec toi… Le proche aidant, un partenaire au cœur de l’action sanitaire et sociale », 2012, 53 p.
BUREAU INTERNATIONAL DU TRAVAIL, Le coût des soins médicaux, Genève, Études et documents, 1959,
260 p.
COMMISSION EXTERNE D'ÉVALUATION DES POLITIQUES PUBLIQUES, Maintien à domicile, proches
aidants et réseau de soins : esquisse de projet, République et Canton de Genève, 2012, 12 p.
CONSEIL FÉDÉRAL, Stratégie en matière de politique de vieillesse, 2007, 58 p.
DA CUNHA A. et al., Handicap et proches aidants : évaluation de l'adéquation de l'offre de prestations de Pro
Infirmis aux demandes des proches aidants, Lausanne, Observatoire universitaire de la ville et du développement
durable, 2013, 78 p.
DIRECTION GÉNÉRALE DE LA SANTÉ, République et canton de Genève, Commission consultative pour le
soutien des proches aidants actifs à domicile, Rapport intermédiaire, 18 octobre 2012, 47 p.
FAES J., Groupe de travail chargé de préparer la mise en place d'un plan cantonal alzheimer, Rapport en vue de la
mise en place d'un plan cantonal alzheimer, DARES, 2012, 75 p.
FONDATION LEENAARDS et al., Aide aux aidants familiaux, travail invisible et enjeux de santé : actes du
colloque romand des 10 et 11 novembre 2003 au Centre de Congrès à Montreux, Vevey, 2004, 151 p.
FUX B., SAUVAIN-DUGERDIL C., STUTZ H., STRUB S., LEUBA A., TRITTEN C., Krummenacher J., Soigner, garder et payer, La famille et les phases tardives de la vie, Berne, Commission fédérale de coordination pour
les questions familiales, 2006, 118 p.
IDS, Soins de longue durée, soins de dépendance, Contributions aux débats relatifs à la révision de la LAMal,
Rapport IDS n° 8, Georg, 2004, 56 p.
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B.Reports and advices:
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•
•
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•
IUMSP, Vieillissement : éléments pour une politique de santé publique, Lausanne, Raisons de santé, 2010, 154 p.
Livre blanc, Proches aidant-e-s de personnes âgées : quelle reconnaissance ? , Synthèse des travaux effectués lors
du symposium du lundi 23 avril 2007 à l’auditoire de la Fondation Louis Jeantet, Genève, 10 p.
MAILLARD P.-Y. et al., Programme cantonal de soutien aux proches aidants à domicile, Canton de Vaud, 2012,
27 diapositives.
NOTARI L., La santé des personnes âgées de 60 ans et plus vivant dans les ménages privés : une analyse des données de l'Enquête suisse sur la santé, Lausanne, Addiction suisse, 2012, 85 p.
Rapport du Conseil d’État au Grand Conseil sur la politique publique cantonale en faveur des personnes âgées en
perte d’autonomie, RD 952, 31 octobre 2012, 56 p.
STUCKELBERGER A. et al., Services for supporting family carers of elderly people in Europe : characteristics,
coverage and usage : EUROFAMCARE : national background report for Switzerland, 2005, 88 p. , Disponible
sur :
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Consulté le 30 décembre 2014.
C. Parliamentary interventions:
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Initiative parlementaire déposée au Conseil national par Jean-François STEIERT, Exonération fiscale de
l’indemnité forfaitaire en matière d’aide et de soins à domicile, n° 12.453.
Interpellation déposée au Conseil national par Cesla AMARELLE, Le travail d’aide aux proches rémunéré. Quelles
adaptations pour les futures politiques publiques ?, n° 13.3214.
Initiative parlementaire déposée au Conseil national par Lucrezia MEIER-SCHATZ, Créer une allocation
d’assistance pour les personnes qui prennent soin d’un proche, n° 11.411.
Initiative parlementaire déposée au Conseil national par Lucrezia MEIER-SCHATZ, Permettre aux personnes qui
s’occupent d’un proche de prendre un congé de repos, n° 11.412.
Postulat déposé au Conseil national par la Commission de la sécurité sociale et de la santé publique-CN, Prévoir
des allocations d’assistance et des possibilités de décharge pour les personnes qui prennent soin d’un proche, n°
13.3366.
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AEBI C. et al., L'adaptation des occupations humaines par les aidants familiaux : "comment les occupations humaines sont-elles adaptées par les aidants familiaux dans leur quotidien ?, Lausanne, Haute école de travail social
et de la santé, 2009, 115 p.
ANCHISI A. et al., Placer une personne âgée démente en EMS : perspectives familiales et soignantes, Zurich,
Haute école santé social Valais, 2006, 135 p.
BIGONI X. et al., Mesure de l'impact de l'implication des proches aidants de patients hospitalisés dans une unité
de soins psychiatriques aigus sur eux-mêmes, Lausanne, Institut universitaire de formation et de recherche en
soins, 2012, 146 p.
BOURBAN-COUTURIER M., Les reconnaissances du rôle des proches-aidants de personnes en situation de
handicap : les reconnaissances du rôle des proches-aidants dans le maintien à domicile des personnes en situation
de handicap dans le dispositif législatif et social en Valais et sa perception par les concernés, Lausanne, Haute
école de travail social et de la santé, 2008, 92 p.
BUREL L., Les gens de l'ombre : quelle reconnaissance et soutien pour les proches aidants ?, Genève : Haute
école de travail social, 2012, 47 p.
CAMPONOVO A., L'admission en EMS d'une personne âgée : l'expérience de la transition vécue par les proches
aidants, Lausanne, Haute école de santé Vaud, 2014, 59 p.
CRETTENAND J., Alzheimer : proches aidants et bénévoles de la Croix-Rouge Valais, Sierre, HES-SO Valais,
2011, 79 p.
FRÔTÉ Y. et al., Sentiment d'impuissance et coping de l'aidant familial lors de l'hospitalisation du proche en milieu de soins aigus : étude descriptive corrélationnelle, Lausanne, Institut universitaire de formation et de recherche en soins, 2011, 178 p.
FUMEAUX N., Les interventions infirmières pour la prévention de la dépression des proches aidants des personnes atteintes de la maladie d'Alzheimer vivant à domicile dans le canton de Vaud, Lausanne, Haute école de
santé Vaud, 2012, 40 p.
GOY M. et al., Quel soutien infirmier apporter aux proches aidants, qui prennent soin d'une personne atteinte de
démence, dans le vécu du deuil blanc ?, Lausanne, Haute école de santé Vaud, 2012, 45 p.
GUENAT E., L'avis des proches aidants de personnes atteintes de pathologies de type Alzheimer concernant des
activités physiques partagées et encadrées offrant un répit sans séparation, Lausanne, Haute école de travail social et de la santé, Bachelor of Science HES-SO en ergothérapie, 2014, 89 p.
KAPPS A., Étude descriptive quantitative et corrélationnelle portant sur la perception de la qualité de vie des
proches aidants de plus de 65 ans qui prennent soin d'un proche souffrant d'une problématique de démence, Lausanne, Institut universitaire de formation et de recherche en soins, 2013, 116 p.
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D. Unpublished dissertations and thesis:
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LEUENBERGER M. et al., Comment intervenir auprès des proches aidants d'une personne en fin de vie à domicile ? , Delémont, Haute École de Santé Arc, 2013, CD-ROM.
LILLA G. et al., Dans la première année qui suit le retour à domicile du conjoint ayant eu un AVC, quelles sont
les stratégies infirmières qui doivent être mises en place, afin de prévenir le fardeau et la dépression chez les
proches aidants de sexe féminins de plus de 45 ans, Lausanne : Haute école de santé Vaud, 2013, 49 p.
MAIRE A., Les représentations émotionnelles de la maladie chez les proches aidants de personnes atteintes de
schizophrénie, Lausanne, Institut universitaire de formation et de recherche en soins, 2012, 169 p.
MAURIAND A., Prendre soin chez soi d'un parent âgé dépendant : quels enjeux ?, Lausanne, Haute école de
travail social et de la santé, 2012, 56 p.
MEYER C., Le système doctrinal des aliments, Contribution à la théorie générale de l’obligation alimentaire,
Berne, Peter Lang, Éditions scientifiques européennes, 2006, 666 p.
NINANE F., Hospitalisation du proche : fatigue et coping du proche aidant à l’occasion de cette transition, Lausanne, Institut universitaire de formation et de recherche en soins, 2011, 170 p.
REXHAJ S. et al., Les stratégies de coping chez les proches aidants de personnes atteintes de schizophrenie, Lausanne, Institut universitaire de formation et de recherche en soins, 2012, 145 p.
VUAGNIAUX C., Ergothérapie à domicile pour les personnes présentant une démence : revue systématique sur
l'apport de l'ergothérapie pour le maintien à domicile des personnes présentant une démence et leurs proches aidants, Lausanne, Haute école de travail social et de la santé, 2012, 99 p.
E. Journals:
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« Familles face au handicap – autonomie et intégration », Questions familiales, 2/98.
« Travail et soins aux proches, Sécurité sociale CHSS, 1/2012.
F. Articles:
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CARDIA-VONÈCHE L., « Famille et santé : une réflexion sur l’apport de la sociologie de la famille à la médecine
sociale et préventive », Cahiers de la faculté de médecine, 1989, n° 18, p. 75.
CHRISTE L., « Maladie: soutenir aussi les proches... : voilà dix ans, la Fondation Pro-XY débutait ses activités afin de
soutenir les proches aidants des personnes atteintes dans leur santé... », Le vendredi, Monthey, 21 juin 2013, n° 379, p.
10.
DANA-CLASSEN N. et al., « Proches aidants : dévoués jusqu'à la limite », Magazine aide et soins à domicile, 2014, n°
4, p. 12.
DANA-CLASSEN N., « Sans les proches aidants, pas de maintien à domicile », Magazine aide et soins à domicile,
2014, n° 5, p. 26.
GHELFI F., BLANC T., DEMONT M., « Les proches aidants dans les cantons de Vaud et de Genève », Ps : info, 2014,
n° 3, p. 4.
JACQUIER A., « Proches aidants : des obstacles, des besoins et des solutions : s'occuper d'une personne en fin de vie à
domicile incombe souvent aux proches », Infosantésuisse, 2014, n° 3/4, p. 24.
PREVITALI A., « Contre une définition législative rigide du handicap », in MURER E. et al. (Dir.), Eingliederung vor
Rente - Engliederung [sic] in die Sackgasse? : neue Lösungsansätze für ein altes Problem : mit nationalen und internationalen Gesetzestexten und Urteilen zum Behindertenrecht, Berne, Stampfli, 1998, p. 109.
PREVITALI A., Droit et handicap : une symphonie inachevée, Plaidoyer, 1995, n° 3, p. 47.
STETTLER M., « L’accompagnement socio-juridique de la personne très âgée de lege lata et de lege ferenda », in
Privatrecht im Spannungsfeld zwischen gesellschaftlichem Wandel und ethischer Verantwortung, Berne, Stampfli,
2002, p. 717.
STETTLER M., « Les limites juridiques de l’aide extratutélaire apportée aux personnes âgées, Revue du droit de tutelle,
1983, n° 1, p. 1.
VANZO I., « Soutenir les proches aidants », Diagonales, Lausanne, 2012, n° 85, p. 14.
G. Public statements:
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OBSERVATOIRE SUISSE DE LA SANTÉ, « Soins aux personnes âgées : la famille aura encore le rôle principal ».
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