Sociology Mind
2012. Vol.2, No.1, 41-49
Published Online January 2012 in SciRes (
Copyright © 2012 SciRes. 41
Caregiver Identity as a Useful Concept for Understanding the
Linkage between Formal and Informal Care Systems:
A Case Study
Normand Carpentier
Centre de Recherche, CSSS de Bordeaux-Cartierville-Saint-Laurent, Montréal, Canada
Received April 30th, 2011; revised October 16th, 2011; accepted November 1 7th, 2011
Health systems of most Western countries are already severely strained and pressure will likely mount
due to population aging and the anticipated increase in chronic illnesses. Interventions of various forms
have emerged in response to the needs of older persons suffering from Alzheimer type dementia, but
problems subsist in the linkage between formal and informal care systems. The objective of our study is
to achieve a better understanding of the limitations of the partnership between the professional and family
systems, employing the identity concept as formulated by Harrison White (2008). We used a case history
approach and three analysis techniques to accurately outline the complex nature of the notion of identity:
social networks, social representation and narrative analysis. We met with a caregiver on three occasions
during a trajectory that spanned a seven-year period. The identity concept provides us with possible ex-
planations of families’ attitudes to services. Our findings reveal that the caregiver is partially positioned
within the management paradigm defined by the medical model, and strives above all to maintain the
continuity of her life in accordance with her identity. Identities seek both social footing and internal co-
herence that can be obtained by stories. Many challenges remain in terms of incorporating the medical
and psychosocial models within an expanded care model for individuals suffering from dementia and
their families.
Keywords: Identity; Networks; Linkage Processes; Formal and Informal Systems of Care; Alzheimer’s
The phenomenon of population aging is characterized by a
striking increase in chronic illnesses and the concomitant need
for long-term care. Numerous observers believe that critical
care is still dominant in the culture of current health systems,
although chronic diseases are demanding a restructuring of
management modes, regulatory mechanisms and funding (Kum-
pers, Mur, Maarse, & Raak, 2005; Miller, Booth, & Mor, 2008;
Taylor & Bury, 2007). Over the past three decades Alzheimer
type dementia has gradually emerged as a fundamental health
and social concern. Over 35.5 million people around the world
suffer this illness and prevalence doubles every 20 years (Alz-
heimer’s Disease International, 2009). Although there is a
growing consensus concerning the need to improve the quality
of care provided to people with dementia and better serve care-
givers and families, many questions remain about the direction
to take in setting up adapted intervention programs.
Dementia in all its forms represents the opportunity for an al-
liance between medicine and the human and social sciences to
construct a comprehensive response to the needs of patients and
their families. There are multiple reasons for promoting a mixed,
bio-psychosocial approach. In the current state of knowledge,
intervention is more care-oriented than curative. In the wake of
deinstitutionalization, care is generally provided in the home
environment, necessarily involving the participation of a large
number of individuals. Illness develops differently for each
person, depending on their life experiences, abilities, be- liefs
and values and physical condition (Parker, 2001). Demen- tia
affects all aspects of a person’s life and, in an elderly person, is
often accompanied by other health problems. A family member,
known as a caregiver, is usually involved at each stage of the
care trajectory: they must coordinate, make decisions, and ne-
gotiate with the other actors; they are key to ensuring the con-
tinuity of care (Carpentier, Bernard, Grenier, & Guberman,
However, the problem of establishing a linkage between
formal and informal care systems remains, and it appears to be
difficult to identify the reasons for this (Brodaty, Thomson,
Thompson, & Fine, 2005; Lyons & Zarit, 1999; Nolan, Lundh,
Grant, & Keady, 2003). It is our view that the identity concept
will provide us with a better understanding of the problem of
establishing partnerships between the actors in the two systems.
The objective of our study is to analyze the trajectory of one
caregiver and identify elements that will help to explain the
difficulty of forming a linkage between the formal and informal
care systems. Our analysis is rooted in the identity concept
(White, 2008). The case history approach makes it possible to
conduct an in-depth analysis of a situation that has attracted
little attention by researchers.
Linkage between the Care Systems
In order to understand the principles enabling the formation
of a linkage between two care systems it is important first to
identify several essential components of these systems. In its
simplest form, the linkage process consists of a connection
between social actors belonging to different systems. In Figure
1, a professional practitioner is matched with a family caregiver:
these two actors belong to broader relationship networks of
specific configurations and ideologies. The practitioner func-
tions according to an approach inspired by biomedical, psy-
chological and social models, or a combination of all three
(Bond, 2001). The treatment commonly provided to the public
today is still inspired by the biomedical model, and comprises
a management process consisting of patients being involved
in prevention activities and encouraged to participate in early
screening procedures, the establishment of a diagnosis, and
the application of a treatment protocol. This form of man-
agement was developed to deal with acute diseases, where
illness is conceptualized in rational terms, often decontextu-
alized, and the physician is seen as the principle repository of
knowledge (Pesco-solido, 1994). The use of psychological
and social models to address the specific characteristics of
dementia is increasingly prevalent in intervention practices. A
growing literature has focussed on concepts like personhood,
person-centred care and public space and home environment
(Kitwood, 1997; Brittain, Corner, Robinson, & Bond, 2010).
Psychosocial approaches are still in the embryonic stage in
intervention programs, but are increasingly considered essen-
tial to the delivery of quality care (Edvardsson, Winblad, &
Sandman, 2008).
The practitioner also functions inside an organization. For
the past 15 years, shortcomings in the management of geriatric
care have led decision-makers toward managerial models, de-
signed to increase efficiency and coordination between re-
sources and professionals, thereby improving management and
allowing for smoother continuity of care (Kodner, 2002). These
forms of management are not, however, problem free (see
Gross, Temkin-Greener, Kunitz, & Mukamel, 2004). Last, the
formal care system represents a cultural authority that is vested
with considerable power in our societies (Starr, 1982).
Here, we introduce the notion of identity, which will be dis-
cussed further in the next section. Front-line practitioners are
individual identities that adhere, to a greater or lesser degree,
to mana gerial car e mode ls or app roache s (F inn, Learmo nth, &
Reedy, 2010). Based on observation, it would seem that insti-
tutions are no longer able to foster the values that would in-
spire their members to ensure that the systems operate har-
moniously; rather, we are witnessing interprofessional con-
flict and lack of motivation among personnel who are con-
fronted with incre.
This might rightly be described as friction among individual,
organizational and collective identities. Informal care systems
are also identities, both individual and collective. Families have
become more diverse and complex in recent decades and it
seems to be increasingly difficult to identify the resources to
which they have access (and are willing to use), the nature of
responsibilities they can accept without compromising the
health of their members, and their trust in government agencies
(Price, Price, & McKenry, 2010). The informal system is com-
posed of family members, friends, co-workers and neighbours
and usually takes the form of mutual aid or serial-type reciproc-
ity (Godbout, 2000; Moddy, 2008). In Figure 1, the caregiver
is part of the close support network that is in turn part of the
broader family institution. Tensions between the different iden-
tities are increasing in societies tending toward individuation.
The nature of relations between front-line practitioners and
family caregivers has not been the subject of much research and
the identity concept might be useful in obtaining a better under-
standing of the linkage process between care systems.
The Identity Concept
The identity concept attracted attention in the human sci-
ences during the 1950s with the work of Erik Erikson (1959). A
very extensive literature then emerged, both theoretical (Stryker
& Burke, 2000) and empirical, particularly with respect to
health (Sulik, 2009), caregivers (Hayes, Boylstein, & Zimmer-
man, 2009) and dementia patients (MacRae, 2010). Many defi-
nitions have been proposed, but two dimensions are usually
associated with social identity. The first is the self identity:
actors negotiate with themselves and embark on a reflexive
process aimed at establishing coherence in terms of their own
narrative. The second dimension is the identity for others that is
supported by others’ perception of oneself. Network theoreti-
cians, notably Harrison White (2008), attributed a specific
meaning to the notion of identity: “any source of action, any
entity to which observers can attribute meaning not explicable
from biophysical regularities” (White, 2008: p. 2). An identity
is either individual or collective and is constituted as an entity
capable of being recognized and acting in its own name.
White (2008) describes four senses of identity. First, identi-
ties seek control—not power as such—but control, in order to
obtain social footing that will provide relational stability in a
threatening, even hostile environment.
In the course of encounters and events the identity is trans-
formed and engages with other similarly oriented actors. The
engagement with a new identity can conflict with other en-
gagements (existing relationships) that are difficult to shed and
that can be threatening to the actor’s identity.
Second, identity is the image actors project to others, in other
Figure 1.
The two systems of care and the identity concept.
2 Copyright © 2012 SciRes.
words, the face adopted in order to be recognized. Actors take
their place in the group through a process of comparison: this
one is like that, the other one is different, and I too, have my
place. Actors adopt codified modes of conduct as they evolve in
projects for which they have goals, preferences and competen-
cies. In this respect, caregivers adopt a role based on their ex-
periences and their conception of a person who helps a de-
pendant relative. They are recognized by other identities, which
reinforce or trap them in their role. In the third sense, identity is
constructed in the tension between the first two identities. It is
formed and transformed in a constant back and forth exchange
with other identities and networks representing different per-
spectives. This third sense involves the definitive formation of
the social bond or the failure of this bond. The actor consults,
seeks alternatives, opts for conformity or creativity, settles into
habitual ways of doing things or innovates extensively. The
identity emerges from the frictions characterizing our relation-
ships with others. The fourth sense of identity corresponds to an
ex post account, after the fact: the autobiographical process is
an identity. Identity is rooted in action—in the description of
such action—and it takes form in accomplishments and en-
gagements. In the autobiographical process, actors describe
regular interactions with others and the possibilities of partici-
pation in events in the outside world as they construct a “story”
about themselves or their identity (Giddens, 1991).
The Research Question
Identities seek both social footing and internal coherence that
can be obtained by the narratives that enable them to address
life’s challenges. In this respect, the linkage process between
two systems can be viewed as the harmonization of the identi-
ties of actors in the systems, while recognizing that these actors
are in tension with the other identities of their respective net-
works. Linkage corresponds to the process enabling identities
to stabilize themselves for a period of time within a network of
relationships. In our study, we examined the caregiver’s iden-
tity based on a research question: what elements of explanation
can the identity concept provide in the context of problematic
linkages between the formal and informal care systems for
Alzheimer type dementia? It is our view that services cannot be
adapted in the absence of a deeper understanding of the identi-
ties involved in the provision of care.
The case study approach enables researchers to conduct an
in-depth examination of a social phenomenon for which there
exists little information as yet and to propose an explanation for
this phenomenon (Ragin & Becker, 1992).We used three tech-
niques to outline the identities’ subjective and objective dimen-
sions over the course of a trajectory.
The Case
The caregiver is a woman in her sixties who lives with her
husband; the couple had three children who are now living in
different cities across the continent. We interviewed the care-
giver on three occasions during a trajectory that spanned nearly
seven years. The caregiver’s mother developed dementia after
living on her own since her husband’s death. The family, of
Jewish heritage, emigrated from Eastern Europe after the Sec-
ond World War. A total of 15 services were used during the
care trajectory, including four residential centres.
Gathering the Data
The caregiver’s social support network was obtained during
each interview. We used a “name generator” which is a set of
questions in which the respondent identified the alters that pro-
vided her with emotional, instrumental, social or informational
support. The support network that was present at the trajec-
tory’s start (T0) was obtained during the first interview. The
presence or absence of relationships among alters was also
obtained. In the second stage, the caregiver was invited to re-
count the story of her mother’s illness and describe anything
that would help to provide a complete understanding of the
situation. A semi-directive questionnaire was used to guide the
interview and, more specifically, to document service use. Close
attention was paid to processes following or preceding pivotal
moments: who was involved in the events? Who offered sug-
gestions or advice? What was the impact of the decisions and
perceived perceptions? The caregiver was also asked to situate
the “start of the illness” and the “entry into the caregiver ca-
reer”, in other words, the moment in which she took on new
tasks in response to manifestations of dementia.
Data Analysis
Through repeated measurements of the caregiver’s support
network we were able to observe variations in relational struc-
tures and identify actors who would potentially support the
identities. These alters form a support network that facilitates
the communication of opinions and propagation of attitudes.
We processed the verbal content of the interviews by employ-
ing two qualitative approaches. First, the subjective aspects of
the identities were analyzed using a structural approach known
as social representations (Carpentier, Ducharme, Kergoat, &
Bergman, 2008). This approach consists of identifying prede-
fined or emerging concepts in the respondent’s discourse and
then grouping them according to the frequency of their occur-
rence. The “core sy stem” forms the basis of representations and
gives direction to numerous social practices while defining the
basic elements of the identity. In the “first zone” we find ele-
ments that come into play during the transformation of identi-
ties, including contradictions or ambivalent feelings underlying
the identities. Less frequently manifested concepts (second
zone) can help personalize life stories and serve as the subject
of content analysis. This analysis provides information on the
respondent’s perception of how they are seen by others, their
reference points, the search for relationships of trust, the di-
mension of chance, etc.—in other words, elements to guide us
in better understanding the identity. The second approach em-
ployed was narrative analysis. Narrative discourse organizes
life, social relations and aids the understanding of the reflexive
processes with which people interpret the past and present and
plan for the future (Daiute & Lightfoot, 2004). We used a tech-
nique whereby we situated all the actors involved in the trajec-
tory and analyzed decision-making, events, actions and nego-
tiations as they occurred over time (Carpentier & Ducharme,
2005). In this way, we were able to identify the actors who
could have facilitated or impeded linkages between the systems.
Narrative analysis allowed us to break down the trajectory into
sequences, based on pivotal actions, or points of disturbance
Copyright © 2012 SciRes. 43
that trigger action, force actors to assume their positions and
significantly modify the trajectory’s course.
Case Study
Figure 2 shows the evolution of the caregiver’s support net-
work and the resources she turned to for help during the seven
years of the trajectory. The caregiver named nine support fig-
ures during this period, with an initial network composed of
seven actors (T0) and a final network of three actors (T3). The
mother (who would develop dementia) used 15 aid resources,
the one of longest duration being the family physician (No. 1)
and the one of shortest duration, a day centre that she attended
for one day (No. 9).
The narrative analysis revealed five action sequences. Table
1 illustrates social representations and lists the concepts most
frequently observed in the caregiver’s discourse (“second zone”
concepts are partially described). Table 2 presents the actors
involved in the sequences and briefly describes certain elements
that could guide the search for explanations of linkage prob-
lems. Nineteen actors were particularly active in the sequences,
eleven of whom were from outside the family.
Caregiver’s Initial Identity
The caregiver raised her three children in the same building
as her parents’ home. Most of her experiences and transitions
took place within the family setting, which is still reflected
today by the large number of family actors in her initial support
network (Figure 2, Network-T0). The caregiver believed she
had a special relationship with her mother and referred fre-
quently to their shared past: “I’m her history” (Table 1-T1,
Social History, Attachments). The family sphere remained cen-
tral, even if its members are widely dispersed geographically
and their relations are fairly conflictual (Table 1-T1, Core Sys-
tem). The caregiver’s identity at the moment of entry into the
trajectory was clearly rooted in a culture of support that is pri-
marily centred on family responsibility.
First Sequence: Entry into the Trajectory
The caregiver described the start of the illness trajectory as
being a medical appointment during which her mother informed
the family physician about feelings of anxiety, a diminished
ability to function and memory loss. She also expressed the
desire to live in a seniors residence. The doctor prescribed an-
tidepressants and supported the mother’s plan to find an
adapted residence. Apparently unaware of early dementia s-
creening, the physician did not consider referring the mother to
a memory clinic. Furthermore, the family did not consider the
possibility of prevention measures for memory loss and associ-
Figure 2.
Transformation of social suppor t and use of services during the 7-year trajectory.
4 Copyright © 2012 SciRes.
Table 1.
Caregiver’s social representations at three moments during the care trajectory (partial list of concepts).
T1 T2 T3
Description n% Description n %Description n%
Core system
Coping 1614.1% Di s satisfied w it h services 13 8.9%Grief 911.84%
Tensions with informal network(IN) 7 6.1% Physical problems 10 6.9%Dignity 79.21%
First zone
Psychological problem 76.1% Coping 9 6.2%Physical problem 67.89%
Social history 65.3% Confronting a pa inful situation 8 5.5%Tension s within IN 56.58%
Control 65.3% Caregiver open to service s 8 5.5%Religion 45.26%
Empathy 55.3% Cost 8 5.5%Reconnaissance 45.26%
Family responsibilities 43.5% Other family problem 8 5.5%Attac hment 33.95%
Attachment 43.5% Respect 6 4.1%Social & personal distance 33.95%
Physical problems 43.5% Geographical distance 6 4.1%Geographic distance 33.95%
Other family problems 43.5% Positive experience with professionals6 4.1%Social hist ory 22.63%
Alters’ current/past experie nces 32.6% Empathy 4 2.7%Positive experience of services 22.63%
Second zone
Withdrawal 32.6% Lack of resources 4 2.7%Confronting a painful situation 22.63%
Normalization 32.6% Lack of sensibility 4 2.7%Empathy 22.63%
Recognition 32.6% Psychological problems 4 2.7%Dissatisfied 22.63%
Uncertainty 21.7% Social history 3 2.0%Lac k of sensitivity 22.63%
Anxiety 21.7% Family responsibilities 3 2.0%Positive experience with professionals22.63%
(…) (…) (…)
ated the mother’s reactions with the normal aging process. Five
actors were especially important during this sequence (Table 2)
and they worked together to find a residence for the mother.
Conflicts arose, however, when the caregiver thought her sister
had not sufficiently consulted her about the choice of a resi-
dence. The two sisters stopped see each other and the mother
went to live in a residence chos en by the caregiver .
Second Sequence: Family Positioning
The second sequence, which lasted nearly two years, was ini-
tiated by the mother’s entry into a residence (pivotal point) and
involved eight actors (Table 2). This was a relatively stable
period, from a clinical point of view, and the family positioned
itself during this time. First, none of the family expressed their
intention to invite their mother to live with them; they respected
her wish to live in a residence, especially since she was finan-
cially indepen dent.
Third Sequence: Active Phases
The third sequence began when the mother was hospitalized;
13 actors in particular were present during this sequence (Table
2). First, in conjunction with the family physician, steps were
taken to get the mother an appointment at the cognition clinic.
The geriatrician diagnosed possible dementia, prescribed an
experimental drug, handed out a pamphlet on available re-
sources and proposed a follow-up appointment in six months.
Some family members, especially the caregiver, continued to
downplay the memory problems and worried more about their
mother’s other health problems. During this period, the family
sought a new residence and obtained the aid of a social worker
to help transfer the mother to another institution. Wanting the
best for her mother, the caregiver chose a semi-private resi-
dence that provided a high level of care. Furthermore, several
efforts were made to obtain services. The daughter and son-in-
law work in the health field and were able to provide a lot of
advice in this area. The caregiver acknowledged these two ac-
tors as providing support only in terms of medical advice (Fig-
ure 2: T1-T2). The mother obtained a place in a day centre but
she only went once, finding it of little interest. The family then
hired a private companion who met with their mother once a
week at the residence. During the interview, the caregiver in-
sisted on discussing a family conflict:
“You have to put this in, I’ll tell you why, because it shows
how life can be disrupted by the children of the caregiver,
which makes it even harder”.
The caregiver described an incident involving misunder-
standings and accusations that had caused great upheaval
among family members who were accusing each other mutually
of craziness and telling each other to see a psychiatrist. Resolu-
tion of this problem was facilitated by an intervention by the
family physician, who referred them to family counselling. The
physician, who cares for nearly all the family members, is
viewed as supportive by the caregiver (Figure 2: T1-T3).
Near the end of this sequence, the caregiver was faced with a
big decision. She realized that she had moved her mother into a
specialized residence too soon and it had been both relatively
expensive and inadequately adapted to handle her mother’s
dementia. The mother was finally moved into a family-type
resource (private residence with a number of residents) and a
social worker helped the caregiver with the transfer.
Fourth Sequence: Another Major Health Problem
The fourth sequence was triggered by the mother’s hospi
Copyright © 2012 SciRes. 45
Table 2.
The 19 social actors involved in the five action sequences.
Sequence Actors Type of relations and facilitator/hinder to linkage process
1. Caregiver Feels close to the mother. Us es a strategy of consultation a nd control
2. Mother Thinks she has dementia; actively planning for the future
3. Family doctor Has known the family fo r s everal years (mother, caregiver, husband)
4. Brother Cl ose bond but lives out of t own
1. 8 months
5. Sister Broken ties due to fights over decision -making
1. Caregiver Progressively engaged; needs control over the s i tu ation
2. Mother Still autonomous, and seeks s ervices b y herself
3. Family doctor Used by the mother to ge t s ervices
4. Brother Cl ose bond, gi ves emotional support
5. Sister Acts on her own, which is not well perceived by the caregiver
6. Home care w o r ker No contact with family. Bathes mother o n ly
7. Daughter Weak b on d , seen only as support for medica l advice
2. 22 months
8. Brother - i n-law Weak bond, see n o nly as support for medical advic e
1. Caregiver As illness progresses, soc i al pressure increases
2. Mother Health deteriorates
3. Family doc t or Used for various tasks: adv i ce, emotional support, inst i tutional transfer
4. Brother Ceases offe r ing support due to his own family problems
5. Sister Contact only c auses frustration
7. Daughter Gives advice but relationship is ambiguous
8. Brother -i n-law Bond remains weak
9. Geriatr ician Provides diagnosis and prescription for d r ugs; suggests follow-up every six months
10. Social worker Used briefly for evaluation and referral to services
11. Private caregiver Sees the mother at residence; no contact with family
12. Social worker Used briefly for evaluation
13. Social worker Used briefly for evaluation and referral to private seniors residence (family-type)
3. 23 months
14. Family-type residence The caregiver expects a family-type atmosphere at this resource
1. Caregiver Lack of support, s pecially f ro m family members
2. Mother Participates less and less in decision-ma king
3. Family doctor Again, very useful and w ell appreci ated
13. Social worker Briefly used for residential transfer
14. Family-type res i d ence Tremendous disappointment for t h e caregiver, no family atmosph ere; no respect for the mother
4. 12 months
15. Nurse Used for medical care; no contact with family
1. Caregiver Is exhausted; takes four mo nths off to rest
2. Mother Live s no w in residence w i th hi gh level of care
16. Reside nce staff Caregive r r eports no personal cont act with a ny staff members
17. Husband Gives support at this difficult time
18. Family Caregive r i s d i sappointed in them
5. 16 months
19. Friend s and visitors Feels estranged from these indi vi duals
talization and the discovery that she had cancer. The caregiver
was against any form of treatment because she believed that
chemotherapy would weaken her mother too much, physically
and psychologically. She wanted her mother to be able to pre-
serve her dignity in the last stages of her life. The family phy si-
cian was again solicited to refer a nurse to come and provide
home care. Six actors were present during this sequence and the
caregiver’s support network diminished progressively (Figure
2: T2). The caregiver struggled to obtain support and under-
standing; her sense of dissatisfaction led her to isolate herself;
moreover, this was a difficult time for the family, with several
of its members falling ill (Table 1-T2: Core System). The care-
giver was constantly confronted with diverging opinions and
some family members began to introduce religious considera-
tions, creating additional stress.
Moreover, tension and the sense of being misunderstood un-
dermined the caregiver’s relations with members of the seniors
residence (Table 1-T2, Core System). The caregiver expected
to find a family setting in which she could come and see her
mother at any time without prior notice, while benefiting from
the staff’s support. She was disappointed and she had several
complaints: locked closet, the wearing of other people’s clothes,
use of a telephone answering machine, etc. Observing her mo-
ther’s deteriorating health (Table 1-T2: Painful Situation), the
6 Copyright © 2012 SciRes.
dimension of respect and dignity took on key importance:
“I want my mother to have respect. The ultimate thing is to lose
is respect, you can lose furniture and possession and money, what-
ever, but your respect … it doesn’t cost anybody anything to be
polite, to be honest. She’s not getting respect there”.
Once again, steps were taken to move the mother into another
residence. A social worker and the family physician were called to
return the mother to the earlier residence, the one providing a
higher level of care. T he transfer was acco mplished in a climate of
conflict and dissatisfaction on the part of the caregiver. The social
representations analysis also indicates larger and demanding family
concerns (Tab le 1-T2: Other Family Problems).
Fifth Sequence: Palliative Care
This last sequence, which lasted 16 months and involved six
actors, began with the mother’s move into a new residence. he
caregiver witnessed the deteriorating health of her mother, who
was suffering not only from dementia but also from a nemia and
cancer. This had a huge impact on the caregiver. cumulated
fatigue resulted in the caregiver’s hospitalization and the physi-
cian prescribed four months of complete rest. When her mother
died, the caregiver once again became actively involved, how-
ever, but the ceremonies affected her deeply. She found the
behaviour of family members and friends who had not been
there for her in the last few years inappropriate. When we in-
terviewed her, the caregiver was in mourning and referred often
to the dignity of her mother, which had not always been re-
spected (Table 1-T3: Grief, Dignity). She felt misunderstood,
resentful and bitter. She said she felt she had been treated un-
fairly and, especially, felt rejected by many members of her
family. The support network was at its lowest point in the seven
years. Her spouse remained present during all her years in her
support network (Figure 2).
The objective of our study was to identify elements that
would help to explain the difficulty of forming a linkage be-
tween the formal and informal care systems. Our analysis was
rooted in the concept of identities, revealing the importance of
social support when it comes to dealing with uncertainty and
also, the caregiver’s need to maintain internal coherence by
means of a narrative. In this case study we observed a constant
shrinking of the caregiver’s support network, the lack of new
sources of support from the informal resources, and subjective
elements that signalled the difficulty of the challenge. These
observations may seem disturbing, particularly if we consider
that this was not a context of healing—and the caregiver agrees
with this qualification—but rather one of accompaniment and
support in which the priority should be the creation of relations
to enhance the quality of a person’s day to day life. We propose
four elements to explain the linkage problems.
The first could be tied to a phenomenon associated with the
exchange phenomenon. Family relations are based on a specific
system of exchange, le don, or gift (Mauss, 1954); it is a system
that is perpetually imbalanced, irregular and unpredictable.
Family ties are nourished by this type of exchange which is the
only viable exchange in day-to-day life or in a crisis period.
This form of exchange is absent or difficult to reproduce in the
formal care system. The relationship between the family physi-
cian and the caregiver was maintained, however, over a long
period. The physician knows the family history; he sees many
of its members individually and provides technical and emo-
tional support. This type of relationship and exchange was not
duplicated with the new services connected with the mother’s
dementia. Many of the meetings with practitioners consisted
solely of assessments for the purpose of obtaining access to
resources. As observed by Adams & Gardiner (2005), a psy-
chosocial orientation could, however, facilitate communications
between family and practitioners, enabling practitioners to play
a more active and sensitive role in the caring process.
A second explanation for linkage problems could reside in
the fourth sense of identity, defining how the caregiver views
herself and how others view her role. The caregiver plainly saw
herself as the central person in her mother’s life and she in-
tended to maintain this relationship, which was an integral
component of her identity. It was a relationship she was reluc-
tant to share, as seen by the conflicts with her sister at the start
of the trajectory, and later with the practitioners in the fam-
ily-type residence. Her commitment to her mother was in con-
tinuity with her personal experience, characterized by little
reliance on resources outside the family, at least until recently.
This could partly explain the failure to adjust to the staff of the
family residence whose approach she found differed too much
from her way of doing things. Last, the centrepiece of the care-
giver’s identity was her need to maintain a sense of continuity
in terms of family life (Bury, 1982), which she revealed by
minimizing the gravity of her mother’s dement ia. Continuity of
care, which is stressed by managerial models, is important, but
should not supplant the person’s biographical continuity, which
is the basis of their identity and enables them to maintain onto-
logical security (Giddens, 1991).
Third, the caregiver did not necessarily identify with the
strict planning approach, based on rational and planned actions,
that is inherent to a medical program. The care she provided for
her mother was in line with their daily lives, comprising unex-
pected events, religious considerations, latent conflicts and
family secrets. The management stages of a medical program
were absent or undefined; this system is not part of the family
identity and could even inspire guilt feelings when members
realized their “negligence” in failing to take preventive action.
The trajectory also included backtracking, for example, the
coming and going between housing resources offering different
levels of care; at times it became completely divorced from a
healing scenario, as in the refusal to accept treatment for the
mother’s cancer. The mother’s dignity was at the forefront of
the caregiver’s concerns. Continuity of care as described by
healthcare managers is viable within the conventional frame-
work of certain (acute) types of illness. Transitions from one
service to another for the purpose of achieving continuity,
however, are actions based on more than a purely rational as-
sessment derived from a few cursory readings. Every decision
must be carefully considered and matched with the identities of
caregivers, who have an overall perspective of the patient’s
living environment, particularly practical considerations, but
also in terms of their relative’s dignity.
A final explanation could be linked to the third sense of iden-
tity, which involves the negotiations that are necessary to form
bonds. Caregivers benefit from support and encouragement, but
they are also subject to negative pressure and criticism. They
must negotiate continuously, both in response to the progres-
sion of their ill relative illness and to life’s ups and downs.
Copyright © 2012 SciRes. 47
These negotiations carry a price; they are exhausting, and end-
ing certain relationships can bring relief, especially when a
caregiver believes that knowledge of the patient’s life history is
essential to making appropriate decisions.
Academic Implications
Our study borrowed from Simmel’s thinking in which social
life is apprehended through the analysis of reciprocal actions
among actors over time. We found the identity concept, as
proposed by White (2008), stimulating and helpful to the un-
derstanding of the forms of social interaction in play with re-
spect to linkages between systems. According to this perspec-
tive, actors are no longer simply autonomous, strictly rational
entities, they act in keeping with the context in which they find
themselves, and their decisions can be understood in terms of
their interactions (in other words, their network). In terms of
methodology, we decided to combine techniques in order to
reveal objective and subjective aspects of the trajectory. In light
of the increasing complexity of the informal care systems, we
must renew and expand our investigative tools, especi ally since
solid research is needed to raise the medical community’s
awareness of the importance of human relations in chronic care.
Research Orientation for Intervention Practice
Our study confirms the importance of supporting efforts to
incorporate psychosocial models into care intervention pro-
grams for patients with dementia. The analysis of identities
reveals the central role of subjectivities, communication and
interactions, and also the emotional burden that transcends the
trajectories of chronic care. This brings us to the same question
as the one posed by Grant, Morales and Sallaz (2009): is there a
place for emotions in modern work organizations? This ques-
tion is fundamentally important to chronic care and should
prompt further analyses of professional identities, which, far
from being delimited by rational imperatives, must take into
account the constant search for support that will enable actors
to deal with their environment, which is often hostile and un-
predictable. Linkage is achieved by reducing the tensions
among identities, while recognizing that these identities are
situated within broader systems. In this respect, Parker (2001)
observes that the desire for efficiency inherent to the institu-
tional management model inspires concern among practitioners
who view performance and control measures as a way of cir-
cumventing the ethical and humanist considerations essential to
the application of psychosocial models. While taking into ac-
count administrative requirements, new approaches must be
developed such as mediation services to reconcile unravelling
families. More active practices need to be designed to tempo-
rarily compensate for disintegrating informal networks, while
remaining realistic about the capacity of services to integrate
the “gift” exchange system. Efforts must also be pursued to
develop family’s educational programs without attempting to
change drastically caregivers to make them fit in with the re-
quirements of the medical program: identities are not easily
Limitations and Strengths
The limitations of a case study approach have been exten-
sively documented and our study will naturally raise questions
regarding the data’s soundness, representativeness and the ca-
pacity for generalization. Such an approach does not allow us to
document the diversity of trajectories, which vary according to
each family’s particular context, the pace at which the illness
progresses, relational status and residential arrangements. The
case study approach is still central to sociological analysis,
however, it enables us to document complexity, the phenome-
nology of a phenomenon and its causal processes (Abell, 2009).
This study is rare in that we were able to meet with the care-
giver on several occasions over an extended period, and it pro-
vides a new angle on a problem that is still mostly analyzed in
terms of the obstacles to receiving care (Carpnetier et al., 2008).
The problem of linkage is presented here as tensions among the
identities and it is our view that services will not have any prac-
tical value without taking this dimension into account.
The linkage between two systems is a complex phenomenon
that engages actors in identities that shift from conciliating to
oppositional, while undergoing constant transformation. Any
efforts to reform the healthcare system in the current context of
aging populations must be informed by an understanding of
both institutional structures and the functioning of family sys-
tems. A deeper understanding of identities is key to improving
healthcare management, as this could explain reactions that
appear illogical from the perspective of administrators but that,
from a caregiver’s standpoint, spring from a concern for iden-
tity’s continuity. These actors are essential partners who have
the capacity to accelerate or slow the process that enables con-
tinuity of care. The challenge resides in the search for a com-
mon ground that reflects the concerns and issues raised by the
different care models—the management priorities inherent to
institutions and the social identities—so that we can develop a
care program that will better address the needs of seniors and
This research was funded by the Canadian Institutes of
Health Research (project No. 85031). We would like to extend
our sincerest gratitude to the families who took part in this
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