Gerontology & Geriatrics Education

ISSN: 0270-1960 (Print) 1545-3847 (Online) Journal homepage: http://www.tandfonline.com/loi/wgge20

Evaluation of a Therapeutic Education Programme

for French Family Caregivers of Elderly People
Suffering from Major Neurocognitive Disorders:
Preliminary Study

Emmanuel Monfort, Antonio Mayol, Clotilde Lissot & Pascal Couturier

To cite this article: Emmanuel Monfort, Antonio Mayol, Clotilde Lissot & Pascal Couturier
(2016): Evaluation of a Therapeutic Education Programme for French Family Caregivers of
Elderly People Suffering from Major Neurocognitive Disorders: Preliminary Study, Gerontology
& Geriatrics Education

To link to this article: http://dx.doi.org/10.1080/02701960.2016.1267640

Accepted author version posted online: 09

Dec 2016.

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 Validation of a Therapeutic Education Programme for Family

Caregivers of Elderly People Suffering from Major

Neurocognitive Troubles: Preliminary Study

Emmanuel Monfort

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Psychology Laboratory (LIP /C2S, EA4145), Univ. Grenoble Alpes, France

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Antonio Mayol

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Psychology Laboratory (LIP /C2S, EA4145), Univ. Grenoble Alpes, France
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Clotilde Lissot
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Department of Geriatric Medicine, Grenoble Alpes University Hospital, France
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Pascal Couturier

Department of Geriatric Medicine - ThEMAS TIMC-IMAG (UMR CNRS 5525), Grenoble

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Alpes University Hospital, France

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Corresponding Author:

Emmanuel Monfort, Department of Psychology, Univ. Grenoble Alpes,

1251 av. Centrale, BP 47, 38040 Grenoble Cedex 9, France

E-mail: emmanuel.monfort@univ-grenoble-alpes.fr

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Abstract

The pertinence of a therapeutic programme of education has been studied with regard

to carers of patients suffering from major neurocognitive disorders. The programme,

adapted to the needs expressed by the carers, consisted of three workshops with a view

to supplying general information about the pathologies, specific information on

behavioural disorders and specific aids to identify and manage their emotional

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reactions. The results of this preliminary study show a moderate significant benefit to

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the level of anxiety in the participants, taking into account the specific expectations of

the carers and bringing to light further needs.

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Keywords: therapeutic education, caregiving, major neurocognitive disorders, dementia
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Introduction

In France, 4.3 million people over 16 are helping - today, regularly, at home - one or several
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persons over 60 in their entourage due to illness, or special needs (Weber, 2010). Because of
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this, these family carers have to learn to manage the numerous changes that appear in their

relative from a cognitive, functional and behavioural point of view. This help comes at a high
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cost, the burden (Sörensen, Duberstein, Gill, & Pinquart, 2006), that includes the whole of

the physical, psychological, emotional, social and financial consequences carried by the
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carers (Bocquet & Andrieu, 1999). It is generally associated with a high level of stress and

depression (Cuijpers, 2005; Zarit & Femia, 2008), or anxiety (Cooper, Balamurali, &

Livingston, 2007), as well as problems of physical health (Pinquart & Sörensen, 2003). The

negative consequences of commitment to a close, sick relative emerge on the social level too.

Indeed, because of the very considerable time spent occupied with caring, 50% of children

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and 70% of partners, who assume the responsibility of carer, state that the time spent with

their dependent charge is more than six hours a day (Kerhervé, Gay, & Vrignaud, 2008), the

carers having, as a result, little time to devote to themselves (Ferrara et al., 2008). This

commitment increases the difficulty of their taking up pleasurable activities (Stevens et al.,

2004), fosters the loss of social contacts (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999) and

increases the feeling of solitude (Beeson, 2003). At the same time their sources of social

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support would appear to diminish significantly over time (Clay, Roth, Wadley, & Haley,

2008); this confronts them then with the major risk of isolation. Their social relationships

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suffer different pressures especially if family conflict is added to this (Ferrara et al., 2008;

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Neufeld & Harrison, 2003). Thus, the illness of their relatives, frequently considered by the

carers as a priority demanding their full attention, generally becomes a major source of stress.
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Beyond the actual burden borne by family carers (Pinquart & Sörensen, 2003),

psychological factors play a central role in their stress process. What the carers believe to be
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the behavioural problems of their charge has, of course, an influence - just as important, if not
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more so - on their health, more than the very presence of these disorders (Campbell et al.,

2008; Mittelman, Roth, Haley, & Zarit, 2004). Helping aging patients with cognitive
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disorders can also affect their well-being in a positive manner (Arai, & Zarit, 201). Some

carers described satisfaction in being able to care of the loved one and understanding that
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he/she could not reciprocate (Shim, Barroso, & Davis, 2012). The feeling of personal
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efficiency (or auto efficiency) is also a determining factor in the caring experience. Carers,

who have confidence in their personal resources to deal with the different stress-provoking

situations, show less depressive symptoms (Gilliam & Steffen, 2006; Rabinowitz, Mausbach,

Thompson, & Gallagher-Thompson, 2007). Some strategies set up by carers to manage their

situation seem to have a positive effect on their mental health. The studies that have

measured the strategies of emotional management more specifically have shown that some of

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these strategies could be adaptative for carers, whilst others could not. The self-blaming

factor (Batt-Leiba, Hills, Johnsons, & Bloch, 1998; Mausbach, Roepke, Depp, Patterson, &

Grant, 2009) could result in negative feelings on the part of carers, which could be

particularly linked to bouts of depression (Jermann, Van der Linden, d’Acremont, &

Zermatten, 2006). On the other hand, resignation (Spira et al., 2007) and refocusing or re-

evaluation could be linked to a lesser level of stress (Haley et al., 1996; Knight, 1991), the

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latter, as well as concentration on the action, being more negatively linked to depression

(Jermann et al., 2006). The distress of carers would be mainly the consequence of a fatalistic

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feeling, built up from dysfunctional thinking (Losada et al., 2010).

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In general, psychosocial intervention for carers of the aged suffering from major

neurocognitive disorders (MNC-D), a new syndrome (APA, 2014) which is largely

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synonymous with dementia, is that of psycho-educative, psychotherapeutic support,

multicomponent counselling or respite solutions (Acton & Kang, 2001; Burgio et al., 2001;
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Gallagher-Thompson & Coon, 2007; Pinquart & Sörensen, 2006; Schulz, O’Brien,
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Bookwala, & Fleissner, 1995). Among these, psycho-educative groups have been a particular

object of study over the last few years. They have shown to be of great effectiveness in
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reducing stress (Brodaty, Green, & Koschera, 2003; Pinquart & Sörensen, 2006), especially

when composed mainly of an educative or multicomponent approach (Mittelman, Ferris,

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Shulman, Steinberg, & Levin, 1996).

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Therapeutic education or therapeutic training was first developed in the context of

dealing with diabetes and has become a reference for treating chronic illnesses, its aim being

to enable a patient to acquire the therapeutic skills necessary so as to be able to apply them to

himself/herself (Lacroix & Assal, 2011). The therapeutic education of the patient (TEP;

Lagger, Giordan, Chambouleyron, Moutet, & Golay, 2008) is structured as follows. First of

all, an analysis of needs gives the possibility of pinpointing the skills to be acquired and the

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establishment of an educative diagnostic that determines the direction towards the learning

workshops. Although the TEP constitutes one of the most recent psycho-educative supports

among those intended to aid family carers (Pariel, Boissières, Delamare, & Belmin, 2013), it

has already showed its effectiveness on the health of, not only the elderly patients, but also

on that of their caregivers. Yet, in France in 2013, it was possible to list 30 programmes of

therapeutic education for old people - 12 of which concerned Alzheimer’s - , out of the 2 700

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authorized national programmes (Pariel et al., 2013) without their effectiveness being known

today. An analysis of the results and needs leads to envisaging the possibility of the

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appearance of new needs during the educative process, in order to reintroduce further

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educative steps if necessary. It is also a question of refraining from imposing one specific

treatment on the patient, but offering targeted shared contracts.

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In this study we set out to evaluate the benefits and the pertinence of a psycho-

educative intervention for family carers. The aim of this intervention was to develop
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competencies in dealing with the illness of their relative and to reduce caregiver anxiety and
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depression.

Method
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Population

All family carers who volunteered (N = 12) were recruited from the Cognitive Behaviour
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Therapy Unit at the University Hospital of X. To be eligible for the study, the carers had to

define themselves as having a responsibility towards the person diagnosed, around six

months before, with MNC-D according to the DSM-5 (APA, 2014), defined by a significant

decrement in cognitive functioning which interferes with daily activities, whether they lived

or not with the relative. The sample size was limited by the lack of available time of the

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patients’ carers. The recipients concerned (N = 9) were of an average age of 83.83 (standard

deviation = 4.21). Behavioral disorders, assessed with NeuroPychiatric Inventory (Cummings

et al., 1994; range 0–144), a caregiver-based report using two-part screening questions

(severity and frequency of behavioural symptoms, and impact on carers). Their average score

at their admission, was of 17.25 (standard deviation = 11.45), led to mild disturbance, with an

average impact score with professionals (range 1–60) of 5.52 (standard deviation = 3.78), led

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to minimal consequences. 5 were suffering from a probable Alzheimer’s disease, 1 from

Lewy body dementia and 3 from another type of MNC-D. The carers had not to participate at

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the same time in another programme of the same psycho-educative nature. The demographic

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characteristics concerning the participants in this study are shown in table 1.

Educational materials were approved by the Cross-Sectoral Unit for Patient Education
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of the X hospital and all participants provided appropriate informed consent.
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Table 1.
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Material and procedure

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Methodology of the intervention. The main aim of the intervention was to increase the

resources of family carers for dealing with their relative’s illness and so improve the state of
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their own health and that of their patient. This aim has been delineated in three sub-aims for

carers:
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• adapt his/hers attitudes to the difficulties of the relative in order to reconsider how

he/she stands in relation to the sick recipient,

• foresee the sudden difficult behaviors, such as agitation and aggression to better deal

with it,

• diminish the stress level.

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The duration of the TEP programme for each participant was 21 days maximum, after the

first meeting with the doctor. This began with a preliminary evaluation interview, the initial

shared educative assessment, devoted to the explanation of the programme to the family

carers, for pinpointing their needs, then for their orientation towards the different TEP

programme sessions, according to the needs identified. The support session finished up with

an interview to evaluate the results, the final shared educative assessment.

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Three workshop sessions were proposed: one for information on the illness of the

relative (Know-how session), a session devoted to bringing strategies of adaptation to deal

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with the behavioural fits of the relative (Know-what-to-do session) and a session for

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improving knowledge - and one of the ways of regulating the emotions experienced, faced

with the relative’s difficulty (Know-how-to-be session). The general aim of the Know-how
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session was to give information about the illness, going on what the carers of the patient with

MNC-D had experienced (“I have been living with this disease for years, but what is it?”). It
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entailed identifying, understanding and adopting general knowledge of MNC-D and linking it
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to the personal experiences of the participants. It consisted of three sequences of learning

activities: 1) Identification of basic knowledge and topics to explore, 2) Understanding of

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patient's disorders and behaviours, 3) Appropriation of explanations, using concrete everyday

situations. The general aim of the Know-what-to-do session was to help the carers to deal
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with behavioural disorders, by identifying their own attitudes and widening their range of
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reactions (“You’re getting angry. You make me angry. I’m getting angry. We’re getting

angry... What next?”). It consisted of four sequences of learning activities: 1) Presentation of

the typical patient’s day, with a special focus on behavioural disorders, 2) Identification of

attitudes and reactions to behavioural disorders, and their effects, 3) Think to new attitudes to

cope with these disorders, 4) Summary and identification of the existing resources and

boundaries. It involved explaining the principal psycho–behavioural symptoms linked to

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MNC-D and identifying the main difficulties the carers had dealing with them. Most

importantly, a typical day in the life of a MNC-D patient was presented to them, in order to

facilitate the identification of the disorders and encourage a thought process on the attitudes

and reactions for them to have, in order to deal with them, according to the effects they had.

The general aim of the Know how-to-be session was to assist the carers of MNC-D patients in

identifying their emotions and attitudes, both positive and negative (“What to do with these

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emotions?”). It was conceived with reference to Profile of Emotional Competence (Brasseur,

Grégoire, Bourdu, & Mikolajczak, 2013), that is delineated in five successive processes: the

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identification, comprehension, expression, regulation and use of emotions. It consisted of

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four sequences of learning activities: 1) Identification of the resources and strategies

necessary to positive achieve a goal in day care, 2) Identification of negative emotions and of
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possible solutions to make it less vivid, 3) Identification of positive emotions and of possible

solutions to make it more vivid, 4) Identification of strategies to cope with negative emotions
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and classification of these strategies according to their efficiency. The aim was to encourage
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the carers to determine their own resources and limits and to elaborate strategies of attitude-

change in complex situations.

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Each workshop lasted 90 minutes, was made up of at least six carers in order to

favour exchanges (Selwood, Johnston, Katona, Lyketsos, & Livingston, 2007), with a
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maximum of two carers for each hospitalised patient at the Cognitive Behaviour Therapy
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Unit and was monitored by a group leader and an observer. To foster a gradual development

of competencies, the carers could not participate in the Know-how-to-be workshop without

having been involved beforehand in the Know-what-to-do workshop, and for to be in this

one, they had to have first been in the Know-how workshop.

Methodology of the assessment of the participants. All the questionnaires were filled in

before the initial shared group programme and after the final group programme assessment,

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with the aim to assessing the effects of the intervention. The evaluation was defined with

reference to the Pearlin et al. (1990) carers’ stress model, which proposes that the effect of

caregiving context variables on outcomes, such as psychological distress, may be mediated

by functional and emotional strategies. The emotional strategies were measured with the aid

of refocus on planning items (thinking about what steps to take and how to handle the

negative event), positive reappraisal (thoughts of creating a positive meaning to the event in

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terms of personal growth) and self-blame (thoughts of putting the blame for what you have

experienced on yourself) from the Cognitive Emotion Regulation Questionnaire (Garnefski &

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Kraaij, 2007). This questionnaire measures the capacity of dealing with negative or

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unpleasant events and the cognitive coping strategies. The non-adaptative mediators of

dysfunctional beliefs concerning care were assessed by means of the Dysfunctional Thoughts
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about Caregiving Questionnaire scale (Losada et al., 2010), 16 items for assessing

caregivers’ ideas and attitudes that influence their reactions in stressful situations (perception
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of sole responsibility and perfectionism). The mediators of the knowledge of the illness,
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behaviour disorders and emotional management, with reference to the Pearlin model (1990),

were assessed according to a Grid of Notation of Carers’ Educational Needs, a tool

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conceived specially for the study. Each level of need (need to know how, need how to do,

need how to be and other needs) was determined by the total number of reported knowledge
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which were lacking about the disease of their relative (neurological determination, cognitive
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disorders, evolving mode, etc.), about how to cope with symptoms (communication,

behaviors, etc.), about how to cope with his/her own stress, sadness or anxiety, and about the

socio-economic context of the neurological pathology. The responsibility felt was measured

by means of the 22-item Burden Inventory of Zarit (Zarit, Orr, & Zarit, 1985), the most

widely used tool for measuring the level of subjective burden (personal strain and role strain)

among caregivers consisting. For each item, the carer is to indicate how often he/she feels as

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described (“do you feel that your relative ask for more help than he or she needs?” etc.).

Hébert, Bravo, and Préville (2000) suggested that a score of 21 to 40 represents a mild to

moderate burden, that a score of 41 to 60 represents a moderate to severe burden, and a score

above 60 indicate a severe burden. The consequences on anxiety and depression were

evaluated thanks to the Hospital Anxiety and Depression Scale (Zigmond, & Snaith, 1983), a

14-item screening scale developed to indicate the possible presence of anxiety and depressive

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states, which has found to be valid in general setting. For each item, the respondent are to

indicate how often he/she experiences, or how important are positive feelings such as “I still

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enjoy the things I used to enjoy” and negative ones such as “I feel restless as I have to be on

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the move”. To rate the two subscales (anxiety and depression), the authors proposed the

following thresholds: from 8 to 10, a disorder is suspected, and from 11 to 21, a disorder may
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be effective.

Statistical analyses. Statistical analyses were carried out using IBM SPSS Statistics
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23 Software (SPSS Inc., Chicago, IL, USA). Comparisons between the initial and follow-up
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time for carers’ mental health, beliefs, strategies and needs were made using the rank tests of

Wilcoxon for paired samples.

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Results
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Before the intervention, the average levels of anxiety were situated above
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pathological threshold. The average levels of depression were just below disorders threshold.

As far as the average burden level was concerned, it was moderate, with a mean score of 41.

The most important strategies were adaptatvive ones, refocus on planning and then positive

re-evaluation, be it before or after the intervention. Rates of use of dysfunctional belief were

similar across the categories of exclusive responsibility and perfectionism. Although anxiety,

burden, and depression all decreased at the end of the TEP, only the decrease in anxiety

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among caregivers was statistically significant. Use of adaptive and non-adaptive strategies

did not change significantly after participation in the TEP. All the mediatory characteristics

and consequences for the health of the carers before the initial shared educative assessment

and after it are presented in table 2.

Table 2.

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Only one significant effect was registered on anxiety (Z= -2.50; p < 0.05). On the

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other hand, no significant differences appeared concerning depression (Z = -1.64.64; NS),

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burden (Z = -1.41; NS), dysfunctional believes of exclusive responsibility (Z = -1.69; NS)

and perfectionism (Z = -.98; NS) adaptative strategies of centring on the action (Z = -0.99;
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NS) and of positive re-evaluation (Z = -1.84; NS), and non-adaptative self-blame strategy (Z

= -1.49; NS). The size of the effect on the level of anxiety, calculated by means of the
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Rosenthal coefficient was moderate (r = .72).

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The carers’ needs before the TEP were high for the Know-how, Know what-to-do and

to a lesser degree for the Know how-to-be. On the other hand, they were mainly low for the
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know-how on the MNC-D of the relative and the strategies of adaption to the behavioural

disorders, but much less for the emotional regulation (table 3). Significant effects were
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registered on the Know-how needs (Z = -3.09, p < .01), on Know what-to-do needs (Z = -
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2.98, p < .01), and on the Know how-to-be needs (Z = -2.55 p < .05), but not on the other

needs (Z = -.91, NS). The size of the effects were large for the level of Know-how needs (r =

.89), and for the level of Know what-to-do needs (r = .86). It was moderate for the Know

how-to-be needs (r = .74)

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 Table 3.

Discussion

The participants in our study, family carers of old people suffering from MNC-D showed

high anxiety disorders as measured by a mean score higher than 7 at the HAD-Anxiety

subscale, as well as moderate levels of burden as measured by a mean score higher than 40 at

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the Burden Inventory of Zarit. It turned out therefore that these persons needed effective

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support, taking into account the great constraints they already had. The results obtained

showed a significantly moderate decline in the level of anxiety after the TEP programme,

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although the low sample number and the absence of group control do not enable the

effectiveness of the TEP programme to be confirmed. The TEP may have a rapid impact on
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generalized anxiety and panic (measured by the HAD-Anxiety subscale), rather than

anhedonia (measured by the HAD-Depression subscale), indicating an improved capacity to

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cope with the future. However, the initial depression level was low, which could also explain
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that we observed non effect on it. Even if at the end of the TEP programme its level has

declined under the moderate threshold, no effect appeared for the burden level, corroborating
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what is usually observed in studies evaluating the effectiveness of intervention programmes

for carers (Cooke, McNally, Mulligan, Harrison, & Newman, 2001; Schoenmakers, Buntinx,
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& DeLepeleire, 2010), although it is the most widely used measure for the negative
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consequences experienced by caregivers. The Zarit Burden Interview often lacks, indeed,

sensitivity for detecting changes. However, our results do not enable us to differentiate

between the influence of the specific characteristics of the carers, any more than that of the

initial evaluation, an indispensible pre-requisite to the TEP. It will be a question, at the next

stage, of controlling the specific effects in the participation of the different workshops and

those to be adapted to the needs expressed.

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 The subsequent results put forward the question of the influence of TEP on

psychological distress throughout the modification of functional and emotional strategies.

The decrease in level of anxiety that was observed could be a question of more positive re-

evaluation of real-life situations during the period of care and a lesser feeling of exclusive

responsibility for the difficult moments during this caring period. It also seems that the effect

observed could be due to the solution of the adaptative strategy of positive re-evaluation.

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What is more, estimating the needs expressed by family carers seems to confirm also that the

TEP programme has been an effective answer to their expectations, the need for Know-how

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and Know what-to-do and, to a lesser degree, the Know how-to-be, considerably diminishing

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therefore their treatment. It can be seen that the needs initially expressed by the participants

appeared to be satisfied at the end of the programme, this being a way to dissipate the usual
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reticence that is specific to carers (Coudin, 2004). Furthermore, new needs appeared

simultaneously (mainly needs relating to technical and social support, professional assistance,
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especially psychological) at the end of the programme, which must be addressed in new
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sessions. It is important to note that our sample comprised mainly women and adult children

of MNC-D patients. Some research even indicates that the individual character of the carers
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revealed a non-negligible influence on their stress level and its physical and mental

consequences. For example, partners said they felt more distress than adult children (Pinquart
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& Sörensen, 2003; Schoenmakers et al., 2010). They could feel more psychological distress
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than their children as they are more emotionally connected to their partner than the adult

children are to their parent. Similarly, endorsing the values of familial obligation increases

the levels of dysfunctional beliefs, by activating maladaptive cognitive schema when

appraising caregiving (Losada et al., 2010). These elements will have to be monitored in

future research studies. According to the hypothesis of Schulz and his colleagues (1995),

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confirmed by Mui (1995), a depressive contagion effect could also exist: elderly parents,

often depressive, could have a depressive mood effect on their caregivers.

For several years now, testing the effects of psycho-education interventions for

improving the well-being of carers have been rather disappointing (Acton & Kang, 2001;

Brodaty et al., 2003; Pinquart & Sörensen, 2006). The number of carers recruited in the

majority of studies is too low to detect any sizeable effect; this has been the case to in our

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research. Moreover, the heterogeneity of the samples, with very open eligibility criteria,

means that the participating carers are not all necessarily in difficulty (Cooke et al., 2001).

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The framework of the TEP (Lagger et al., 2008), aiming at offering targeted interventions

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with strict criteria of non-eligibility, has enabled this slant to be avoided, but has strongly

curbed the number of potential participants. Again, although there is no consensus on this
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point (Gallagher-Thompson & Coon, 2007), the limited number of sessions offered -

compared to other programmes - could partly explain the barely significant results obtained.
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The brevity of these interventions would result in their content being often dense and the
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carers having too little time to digest what they had been taught (Vézina, Ducharme, &

Landreville, 2005). The TEP could thus offer an adapted and adaptable solution, according to
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the needs and constraints expressed, though the effects of which are still to be confirmed,

especially in the long term. Besides, to answer the diversity of the needs, the TEP
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programme should include more work sessions in the future. In order to confirm the
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pertinence of the TEP programme, it will be also necessary to evaluate in greater detail its

implantation and the adhesion of the participants (Burgio et al., 2001; Selwood et al., 2007).

In conclusion, this exploratory research implies, in spite of its methodological weaknesses,

that the TEP programme - for family carers of patients suffering from MNC-D - developed at

the University Hospital of X, helped to diminish the needs expressed by participants and

participants’ anxiety, even if no differences in adaptive strategies were observed. The TEP,

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by its multidisciplinary approach, considering the patient as the central actor in a therapeutic

process, seems therefore to present a strong potential for undertaking the treatment of family

carers of people suffering from MNC-D.

Acknowledgements

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We owe special thanks to Elodie Damier, Sandy Fourre, Gina Corte Franco, Virginie Garnier, Fanny

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Javet, Nicolas Jouanneaux, Anna Lantez, and Sophie Scavone, who have been involved in the TEP

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programme, and to Anna Tcharkassof, for providing the database Dynemo (https://dynemo.upmf-

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grenoble.fr/), which was used to design the Know-how-to-be space.
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Batt-Leiba, M. I., Hills, G. A., Johnsons, P. M., & Bloch, E. (1998). Implications of coping

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Beeson, R. A. (2003). Loneliness and depression in spousal caregivers of those with

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