Dementia
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Freedom of choice and decision-making in health and social care: Views of older
patients with early-stage dementia and their carers
Jeanne Tyrrell, Nathalie Genin and Michele Myslinski
Dementia 2006; 5; 479
DOI: 10.1177/1471301206069915
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a rt i c l e
Freedom of choice and
decision-making in health and
social care
Views of older patients with early-stage dementia and
de
men
tia
dementia
© 2006
sage publications
www.sagepublications.com
vol 5(4) 479–502
their carers
JEANNE TYRRELL
Université Pierre Mendès France
N AT H A L I E G E N I N
Université Pierre Mendès France
MICHELE MYSLINSKI
Université Pierre Mendès France
Abstract People with dementia represent a significant and growing
proportion of patients, but little is known about their involvement in
making choices about their health or social care. This study explored
the experiences of French older patients with dementia and their
caregivers about their participation in decision-making. Individual
semi-directive interviews were conducted with patients (n = 21) and
their primary carer focusing on a recently made decision (to accept
professional help at home, to attend a day centre, or to move into
residential care). Five aspects of decision-making were explored:
information received; being listened to; expression of opinion; time
allowed to reflect on decision; and possibility of changing one’s
mind. Carers tended to be more satisfied than patients on most
criteria. Many patients felt they had not been listened to sufficiently,
and had limited freedom to participate in decision-making.
Continuing education may help professionals to improve their ability
to involve patients with dementia in decision-making concerning
their care arrangements.
Keywords communication; decision-making; dementia; evaluation;
patients’ and carers’ views
Introduction
In France, as in many developed countries, the recognition and detection
of dementia has improved, and the number of older people diagnosed with
Alzheimer’s disease or other forms of dementia is rising. Many ethical
DOI: 10.1177/1471301206069915
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dementia 5(4)
issues exist for health and social care professionals in their daily work with
cognitively impaired patients and their caregivers, as the nature of
dementia-type illness raises questions about patient freedom and
autonomy. An increasing number of people are diagnosed at earlier stages
of the disease than in previous decades; this has generated much interest
in patients’ insight and competence, as well as their liberties and their
freedom to participate in decision-making.
Freedom of choice: Rights and realities
In France, the idea of free choice (‘liberté de choix’) is highly valued in
certain features of health care; for example, patients can choose and consult
specialists independently of their family doctor. Increasing emphasis is
being placed on patient rights, notably for those who are using psychiatric
and geriatric care services. Furthermore, recent legal reforms have emphasized the rights of patients as users, and these oblige professionals to be
more attentive to the information provided to patients (Younès, Sarfati,
Passerieux, & Hardy-Baylé, 2002). For older patients, a Charter of Dependent
Elderly Patients’ Freedoms and Rights was published in 1987, arising from
concerns about the treatment of older users of health and social care
services. This document has been revised and widely circulated among
professionals and establishments involved in the care of elderly people
(Fondation Nationale de Gérontologie, 1989). The purpose of this charter
is to remind professionals, families and patients that older people maintain
their rights and freedoms as citizens, even when frail or dependent. For
example, the charter reminds readers that elderly people have the right to
choose where they live, to have access to health and social care, and to
receive clear information about their entitlements.
In reality, the rights and freedoms of older patients are fragile, and this
appears to be an international phenomenon. Several authors have highlighted the constraints and choices ‘imposed’ on older patients, notably in
the context of life in institutional care (Kitwood, 1997; Tadd, Bayer, &
Dieppe, 2002), or in decisions surrounding the move into residential
homes (Davies & Nolan, 2003). Somme (2003) reviewed data from 3500
elderly people living in 584 residential care settings in France. Most residents declared that the decision to move into residential care was made by
their families or professionals; only a third felt actively involved in this
decision. In another study, interviews were conducted with elderly people
when they were about to move into residential care (Leroy, Myslinski, &
De Galbert, 2003). Most people said that it was their family who decided
for them, and that they felt resigned to the wishes of their relatives.
Much of the care for people with dementia is provided informally,
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tyrrell et al.: freedom of choice
within the community. Family members are largely responsible for
informal care, often on a long-term basis. As Wackerbarth (2002) has
pointed out, they face a series of decisions throughout the course of the
disease, including choices about services, health and safety, and care
arrangements. In France, family caregivers are recognized as a potentially
vulnerable group in need of support and advice from professionals, given
the progressive and irreversible nature of dementia (Fior & Lallemand,
2001; Tyrrell, 2004). Apart from the stresses associated with informal caregiving (Thomas et al., 2002), some carers are reluctant to accept
professional help or formal care for their relative (Coudin, 2004). However,
the dynamics of working with carers and people with dementia in the
community have received little attention from researchers in France,
relative to other developed countries such as in England or North America
(e.g. Clarke, 1999; Hasselkus, 1988).
In a recent paper ‘On liberty for the old’, Browne, Blake, Donnelly, and
Herbert (2002) have observed that the freedom of older patients is often
overlooked and interfered with by professionals or family members. Such
interference is often justified on the grounds that the older person is ‘at
risk’, and that it is in the interest of the patient, or in the interests of others,
to restrict his or her liberty or freedom. As Clarke (1999) has argued, the
rights of people with dementia are tangled inextricably with the rights of
the family caregiver; this may explain why decision-making within the
family of dementia patients has attracted so much interest in the ethics
literature. More recently, research about decision-making has focused on
the inclusion of patients in research studies or clinical drug trials for
Alzheimer’s disease. While patient participation is essential for research
studies, it is often the primary carer who decides on behalf of the patient,
rather than the patient him or herself (Karlawish, 2002). Sugarman, Cain,
Wallace, and Welsh-Bohmer (2001) have drawn attention to the shifting of
decision-making between dementia patients and their proxies in the
context of choosing to participate in research trials. Their interviews with
proxy respondents indicated that the locus of decision-making was often
unclear, so that it was difficult to know to what extent the patient had been
involved in deciding to participate in research studies. This ‘shifting’ of
power may also be present in day-to-day decisions. No previous studies
have examined the opinions of patients with dementia concerning their
experiences of decision-making in the context of day-to-day care, or their
views about their choices, although there is much discussion about the
importance of protecting their rights and freedom.
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dementia 5(4)
Evaluating freedom of choice
The concept of free choice in health and social care settings is complex and
difficult to define clearly. A framework for exploring freedom of choice
(from the patient’s point of view) has been recently proposed by Frossard,
Boitard, and Jasso-Masqueda (2001). Five dimensions have been identified
as underlying freedom of decision-making in medical or social care
settings. These include: the information made available to the patient; the
extent to which a patient considers he is being listened to by the
professional; the extent to which he is able to express his opinions about
the options; the time available to reflect on the options before making a
choice, and the possibility of being able to change one’s mind if the
decision taken doesn’t suit. These dimensions can be evaluated using a
semi-structured interview, aimed at reviewing the conditions under which
a real-life decision has been made. These criteria are not exhaustive, but
they provide a structured way of evaluating the conditions under which
patients’ choices are made in health and social care. This approach is applicable to different groups of elderly patients and/or their carers.
Exploring freedom of choice and dementia:
Methodological considerations
The study of freedom of choice and decision-making in people with
dementia presents a number of potential problems, which may explain why
research into these processes is limited. First of all, cognitive impairment
is often a criterion for excluding elderly patients from studies of user satisfaction or those requiring patients’ opinions. The extent and nature of
cognitive decline is highly variable between individuals diagnosed with
dementia, even within the early stages of illness. Impaired short-term
memory can affect the reliability of self-report data. Also, there are often
uncertainties about the extent to which an individual patient’s judgement
is affected, and as well as the degree of insight into his or her condition
(Gaichies & Charles, 2001). Furthermore, dementia-related communication problems (i.e. language disturbance or aphasias) can limit the extent
to which patients can talk about their experiences.
Nevertheless, as the diagnosis of dementia is being made earlier than
in previous decades, health and social care professionals are increasingly
encouraged to involve the patient as much as possible in decision-making
and in discussions about their care (Gallard & Willard, 2002; Sugarman,
2001). Recent studies from other countries have indicated that people in
the early and even moderate stages of dementia are often capable of
expressing meaningful opinions about the quality of care or their quality
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tyrrell et al.: freedom of choice
of life (Brod, Stewart, Sands & Walton, 1999; Mozley et al., 1999). Furthermore, recent work by Feinberg and Whitlach (2001) has demonstrated that
cognitively impaired elderly patients gave consistent responses to questions
concerning their preferences, choices and day-to-day involvement in
decision-making.
The aim of our study was to explore the conditions of decision-making
with people diagnosed with dementia, in order to understand to what
degree they are involved in making choices about their care arrangements.
No previous studies exploring this specific issue directly with dementia
patients have been found in the international literature.
Method
Subjects
Participants were recruited with the assistance of a network of communitybased local psychologists and psychosocial services. The criteria for
inclusion were that the patient was (a) diagnosed with dementia; (b)
capable of communicating verbally in an interview situation; (c) had an
identified primary caregiver who was available to be interviewed. We
intended to interview about 30 patients for this study.
Procedure Patients were recruited with the help of local health and social
care professionals working within home health care settings. Letters were
sent to 10 centres (who had previously agreed to assist with recruitment)
detailing the purpose of the study, and the profile of patients who were
eligible for inclusion in the study. Each centre then forwarded letters to the
designated primary caregivers of these patients to explain the purpose of
the study and to inform both the elderly patient and their caregiver that
they were invited to participate on a voluntary and confidential basis. Those
who were willing to participate sent a pre-addressed stamped envelope to
the research centre, and an interview time was then arranged by telephone.
Initially, 50 patients were identified as meeting the research criteria, and
received invitations to participate. However, several factors reduced the
number of participants to 12 (14 no-replies, 13 refusals, six cases of hospitalization, three deaths and two people who intended to participate but
could not find time to do so). A second wave of recruitment was launched,
and 53 more people were invited to participate in the study; nine more pairs
of interviews were conducted within the six-month time limit of our study.
Data collection Freedom of choice was explored using a semi-structured
interview, based on the freedom-of-choice interview schedule (Frossard et
al., 2001). An English translation of the interview schedule we used is
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dementia 5(4)
included in the Appendix which shows the questions presented to the
people with dementia and their caregivers. Participants were asked to think
of a recent situation where they had had to make a choice concerning their
health or social care. They were then asked to indicate: whether they had
been informed adequately; whether they had been listened to; whether
they had been able to express their opinion about the options proposed;
whether they had had time to reflect on their choice; and to what extent
they could change their minds if their decision didn’t suit them. They also
had to indicate on a visual scale the global degree of free choice they felt
they had had at the time of decision-making (0 no choice, 5 moderately
free, 10 completely free choice).
Interviews were conducted with 42 participants (21 patients with
dementia and their 21 primary carers). The first stage of the interview was
conducted jointly with the patient and his caregiver, so that the patient
could nominate a recent situation where a decision regarding his care had
had to be made. Each party was then interviewed separately to ensure that
independent responses were collected concerning their views of how this
decision had been made. In addition to the interview, we asked each carer
to complete a GERRI profile (Geriatric Evaluation by Relatives Rating
Instrument) for their elderly relative, which indicates the level of cognitive, social and emotional deterioration (Schwartz, 1983). The GERRI was
introduced into the study as an indicator of psychological functioning, as
we didn’t always have access to recent assessment data about each participant’s current cognitive status.
Results
Patient characteristics The 21 patients were aged between 74 and 91
years (x = 84 years). There were five men and 16 women. Their GERRI
profiles indicated that they were in the early stages of dementia, with
various cognitive, social and emotional problems (see Table 1);1 nevertheless, they were all able to participate in the interviews and give meaningful responses. Six were living alone, seven were living with a spouse or
relative, and eight had recently been admitted to residential care.
Situations of choice The situations mentioned by the participants fell
into three categories: the decision to accept help at home; the decision to
attend a day centre; and the decision to move into residential care. There
were no statistically significant differences in the GERRI scores of the three
subgroups, which means that their levels of psychological functioning were
similar, and independent of the decision type. Patients’ replies concerning
the five conditions of choice are shown in Figures 1–5.
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tyrrell et al.: freedom of choice
Table 1 Carers’ ratings on GERRI scale for 21 participants with dementia (overall
GERRI score, three dimensions, and breakdown of scores for each of the three
subgroups of patients by decision-type)
Domain of
functioning
Cognitive
Social
Emotional
Totals
Type of decision
———————————————————————————————
Overall
Accepting help
Going to day
Admission to
(n = 21)
at home
centre
residential care
(n = 8)
(n = 5)
(n = 8)
74
56
19
x = 148*
76
55
18
x = 149*
67
54
18
x = 140*
75
57
20
x = 151*
* Total mean GERRI scores were rounded to the nearest whole number
Note: Increasing scores indicate poorer levels of psychological functioning
Information Figure 1 shows that four patients felt that they were very well
informed about their options; nine were partially informed; eight were not
at all informed.
Being listened to Eight patients felt that they had been listened to
(Figure 2); eight felt that they had only been partially heard; five said that
they had not been listened to at all. Some patients specified that the feeling
of not being fully listened to also concerned their families, and not only
professionals.
Expressing opinions about the choices available The most frequent
reply (nine cases) was that the patient had not been able to express their
views at all. Six people had fully expressed their views, and six felt that they
had only partially expressed their opinions (Figure 3).
Time for reflection The most frequent reply was that the choice was made
without any time for reflection (13 cases, as shown in Figure 4). Seven
patients said they had some time to reflect, but that it was insufficient. Only
one person felt that their decision had been taken with adequate time to
reflect on their options.
Reversibility of choice Figure 5 shows that eight patients felt that their
choice was satisfactory, and that they did not wish to change their decision.
One person was only partially satisfied with her choice, but felt that she
could modify it if she wished. Most patients (12 cases) felt that the choice
was difficult or impossible to modify; in seven of these cases, the choice
concerned entering residential care.
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Frequency
dementia 5(4)
12
10
8
6
4
2
0
Patient
Carer
Very well
informed
Moderately
informed
Not at all
informed
Not able
to be informed
Figure 1 Patient and carer views about the information received from professionals
Frequency
15
Patient
Carer
10
5
0
Very well
listened to
Moderately
listened to
Not at all
listened to
Not able
to be listened to
Figure 2 Patient and carer views about being listened to by professionals
Frequency
20
Patient
Carer
15
10
5
0
Complete
expression
Moderate
expression
No possibility
of expression
Incapable of
expressing an opinion
Figure 3 Patient and carer views about the possibility of expressing their opinion
Global perception of freedom of choice The elderly patients had diverse
views about their overall freedom of choice (see Figure 6). The most
frequent rating was 5/10 (corresponding to a moderately free choice).
People who decided to attend to day centre (x = 7.2) or accept help at
home (x = 6.5) had higher perceptions of free choice than those who
decided to go into residential care (x = 2.5).
Characteristics of caregivers
The 21 caregivers were aged between 42 and 85 years of age (mean: 62
years). The relationship with the patient varied: 14 were daughters; six
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tyrrell et al.: freedom of choice
Frequency
15
Patient
Carer
10
5
0
Thoroughly
considered
Moderately
considered
Not at all
considered
Incapable of
reflecting
Frequency
Figure 4 Possibility of reflecting upon the choice before making a decision: patient
and carer views
10
9
8
7
6
5
4
3
2
1
0
Patient
Carer
Decision suited me; Partly suitable,
No wish to change
but I could
change it
Partly suitable,
Unsuitable choice,
and I could only
no possibility
partially change it
of changing
Figure 5 Reversibility of choice: patient and carer perceptions
12
Patient
Carer
Frequency
10
8
6
4
2
0
0
1
No choice
at all
2
3
4
5
6
Moderately
free
7
8
9
10
Completely
free choice
Figure 6 Distribution of scores concerning perceived level of free choice (patients and
carers)
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dementia 5(4)
were sons, and one was the husband. The carers’ replies to the five
conditions of choice are shown in Figures 1–5. Their perceptions of their
relative’s overall freedom of choice are shown in Figure 6.
Information Figure 1 shows that seven carers felt that they had been very
well informed about the options; ten were partially informed; four were
not at all informed.
Being listened to Thirteen carers felt that they had been very well listened
to by the professionals (Figure 2); eight felt that they had only been
partially heard. In contrast with the elderly patients, none of the carers felt
that they had not been listened to.
Expressing opinions about the choices available Figure 3 shows that
the most frequent reply (15 cases) was that the carer had been able to
express himself completely (in contrast to the experiences of the patients).
Four carers said that they had only been able to partially express their
opinions, and two carers felt that they hadn’t the opportunity to express
their opinions at all.
Time for reflection Figure 4 shows that the most frequent reply of carers
was that they had had enough time to reflect on the decision (16 cases).
This contrasts sharply with the replies of patients. Four carers said they had
some time to reflect, but that it was insufficient. Only one carer felt that
the decision had been made without adequate time to consider the options.
Reversibility of choice Nine carers felt that the choice was satisfactory,
and that they did not wish to change it (Figure 5). Three carers were only
partially satisfied with the decision, but felt that it could be modified or
reversed. Nine carers felt that the decision was difficult or impossible to
modify or reverse.
Global perception of freedom of choice of the patient For this
question, carers were asked to estimate their relative’s freedom of choice
on the visual scale (and not their own feelings about freedom of choice).
Overall, the carers had more negative views of the freedom of choice of
their relative than did the person with dementia (see Figure 6). The most
frequent rating from carers was 0 (corresponding to a total absence of
choice). Patients who decided to attend a day centre (x = 4.8) or accept
help at home (x = 4.8) were judged to have had higher levels of freedom
of choice than those who decided to go into residential care (x = 1.6).
There was no significant correlation between the ratings of carers and
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tyrrell et al.: freedom of choice
patients in terms of global freedom of choice (r = .36; p = .14). However,
visual inspection of the pairs of ratings showed that some carers were much
more accurate in judging their relatives’ feelings than others.
Discussion
One of the most important findings is that it is possible to explore perceptions of decision-making with older people who are cognitively impaired.
We were unsure at the beginning of the study whether it was feasible to
conduct this type of interview with this patient group, and if they would
be able to recall recent situations of choice. We found that all 21 participants with dementia were able to complete the interview, and to offer
meaningful replies to the questions. Their demographic profile and those
of their carers broadly reflect national trends in France, where most people
with dementia are elderly, and most informal carers are female family
members (Thomas et al., 2002). Our results contradict the view that older
users are reluctant or unlikely to express negative views of the services
offered or received (Frossard, 1996; Owens & Batchelor, 1996). Perhaps
this is because our study did not question their satisfaction with
professionals, but asked them to reflect on specific dimensions of a reallife experience.
We are cautious about making generalizations from the modest-sized
sample, but our findings indicate some problems with patients’ freedom
to participate in decision-making. Carers tended to be much more satisfied with the information received from professionals than were the
patients. More than a third of patients said that they were not at all informed.
This suggests that professionals involved in decision-making may need to
think carefully about how information is presented to both parties. Apart
from verifying that both parties have received and understood the relevant
information, some thought should be paid to the language used, and to
the preoccupations and needs of the recipient. Patients and their carers
may have different views about what is important, but it is not clear to
what extent professionals are aware of this difference. This discrepancy
about the information received deserves attention for at least two reasons;
first of all, incomplete information about a decision reduces the person’s
ability to make an informed and free choice (Browne et al., 2002).
Secondly, the patient has a right to be fully informed before making a
choice; informing a carer is not a substitute for informing the patient. The
perceived lack of information deserves further exploration in future
studies, to determine to what extent the information has been provided,
understood or perhaps forgotten, phenomena which are not limited to
patients with dementia type illness (e.g. Younès et al., 2002). Patients with
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dementia 5(4)
cognitive impairment may require some extra attention from
professionals, to ensure that they have clearly understood the information
that is being discussed.
The replies to the questions about communication (being listened to,
being allowed to express opinions) reveal further problems. Carers were
more inclined to report that they had been listened to attentively by
professionals, than were the patients. Furthermore, some patients with
dementia commented that they felt ‘unheard’ both by professionals and their
carers. The possibility of expressing an opinion about the options being
proposed is an essential component of free choice. Again, the elderly
people had more negative views of their experiences, compared with their
relatives. The most frequent reply from the patients was that there had been
no possibility at all for them to express themselves. In contrast, most carers
replied that they had been able to express themselves completely. This raises
questions about the style of interviewing adopted by professionals – are
the carer’s views more actively sought than those of the patient?
Most elderly patients felt that they had had to make their choices
without having adequate time to reflect upon the decision. In contrast,
most carers felt that they had enough time to reflect before the decision
was made. The importance of having some time for reflection is rarely
addressed in the literature concerning decision-making in health care, but
it is an understandable requirement for patients. Time to reflect includes
time to think through the options, and to let ideas mature, yet only one
patient felt that he had had adequate time to consider his choice.
It is not known to what extent the choices being made were in a context
of crisis, which might explain the limited time allowed for reflection.
Previous studies have noted that entry into residential care often occurs
following a crisis or because of disruptions in caregiver support (e.g. Davies
& Nolan, 2003; Leroy et al., 2003). This may have been the case for some
of the participants, as it seems that the decision-making concerning residential care was the most constrained of the three types of choices
examined. Nevertheless, patient involvement in decision-making is important, not only in the context of rights, but also for long-term health and
well-being. In his recent analysis of data from French elderly people
entering residential care, Somme (2003) found important differences in
self-reported health between those who had been involved in the decision
to leave home and those who hadn’t. Residents who had felt included in
decision-making had higher levels of well-being and positive adjustment
to residential life than those who reported that their placement had been
determined by their carers.
A fifth dimension of free choice is the degree to which a choice can
be reversed or modified if necessary. Carers and patients had similar views
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tyrrell et al.: freedom of choice
on this issue, relative to the other dimensions of choice, which are perhaps
more subjective. First of all, over one-third of the participants felt that their
decision had been suitable, and there was no wish to modify or reverse it.
However, many people felt that the choice once made was irreversible, or
very difficult to modify. These situations often related to moving into residential care; seven of the eight patients who had moved into residential
care felt this way. Choosing to move into residential care often involves
complicated engagements such as transferring property or terminating
rental agreements; these are much more difficult to reverse than, for
example, deciding not to accept professional help at home. In other cases,
there was no possibility of modifying apparently simple decisions, such as
changing the number of days one wished to attend the day centre; the
choice was irreversible for administrative reasons.
The data concerning global freedom of choice shows that the carer’s
perception is not always a reliable indicator of the patient’s view. There was
no correlation between their views about free choice, although some
carers’ ratings coincided with those of their relative. The ability to gauge
another person’s feelings of freedom probably varies with the degree of
emotional closeness between the patient and his carer. Previous studies have
also shown important variations between patient and proxy responses
about quality of life issues (e.g. Novella et al., 2001). This indicates that
direct solicitation of patient opinion should be favoured whenever possible,
rather than using a carer’s perception as a reliable substitute.
Our study has several limitations. First of all, we experienced considerable difficulties accessing people with dementia to discuss their experiences
of decision-making, and had to extend both the target population and the
timeframe of the study. Despite the help of local psychologists and other
professionals in identifying suitable participants, only 21 pairs of interviews were conducted from a total target group of 103 people. Some of
the difficulties we experienced are common to community-based studies
with psychiatric patients or elderly people. These included non-responses,
refusals, time-constraints, ill-health, unforeseen hospitalizations, and even
death. Some carers indicated by telephone that they intended to participate,
or that they might participate, but they were unable to organize free time
within the six-month period of data collection. Some carers indicated that
they were ill-at-ease at the prospect of discussing issues around decisionmaking and their elderly relative. The fact that it was usually the primary
caregiver who decided whether or not the interviews went ahead (and not
the person with dementia) is common to other studies with this patient
group (Karlawish, 2002; Sugarman et al., 2001); however, it introduced
an important bias into the study. Overall, it seems likely that our 21 participants had higher levels of freedom than the average person with dementia,
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given that most patients in the original target groups did not have the possibility of participating in the study.
The fact that we relied on local health care professionals to nominate
people who they considered as suitable participants (using our inclusion
criteria) may have introduced another form of selection bias into our study;
patients or families known to have difficult social care situations may have
been excluded from a study which invited them to discuss their experiences of decision-making in the context of formal care arrangements.
Our exploration of patients’ experiences was conducted retrospectively,
and was limited to a subgroup of people in the early stages of dementia
who were capable of participating in an interview and expressing their
views about the different stages of decision-making. From a methodological point of view, our exploration of decision-making was restricted to the
five dimensions within our interview schedule, and this gives preliminary
indications rather than in-depth knowledge of the circumstances surrounding the choices made. Furthermore, we did not explore the views of the
professionals who had been involved with the patients and carers when
they were making these decisions; their views would have deepened our
understanding about the conditions of decision-making and choice. Finally,
our study was conducted in one region in France. There may be differences
between regions and countries, based on how advanced their services are
for older people with dementia. Some of these methodological limitations
might be overcome by further studies that will be outlined in the following section.
Recommendations for education, practice and research
Our study suggests that the views of people in the early stages of dementia
are often unsolicited and unheard. This may be related to the interview
methods used by professional staff, as well as their assumptions about the
nature of dementia and its consequences (Goldsmith, 1996). Our data
highlight three areas of difficulty that may relate to professionals’ understanding of dementia, and the subsequent skills and attitudes required to
work successfully with this patient group and their carers.
Many non-medical professionals (nurses, social workers and paramedical staff) have received little or no training about dementia, despite being
confronted with a growing number of people suffering from Alzheimer’s
disease and other dementias. Most of the care delivered to this patient group
is non-medical, and these professionals require targeted training to improve
their understanding of dementia (Hobson, Coyle, Leeds, & Meara, 2001).
In recent years, there has been an increase in the provision of continuing
education about dementia in France, although there is considerable variation
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tyrrell et al.: freedom of choice
in terms of content, depth, etc. We recommend that education programmes
should aim to help staff to understand the different stages of dementia, with
an emphasis on recognizing the capacities that are intact, as well as those that
are perturbed.
There may be a tendency for some professionals to communicate with
the accompanying family caregiver rather than the elderly patient, on the
assumption that a person with dementia is incapable of offering meaningful points of view (Goldsmith, 1996; Kitwood, 1997). Dementia is not an
‘all or nothing’ illness, but the diagnosis raises questions about patient
autonomy, and intellectual ability, as well as diverse ethical issues (Baldwin,
Hughes, Hope, Jacoby, & Ziebland, 2002; Hughes, Hope, Savulescu, &
Ziebland, 2002). Our experiences of interviewing participants for this
study confirm the findings from some other recent studies (Brod et al.,
1999; Feinberg & Whitlach, 2001; Mozely et al., 1999) in that a meaningful dialogue is often possible in the early stages of dementia. This may require
additional time, skills and efforts from the interviewer to facilitate the
expression of views. Such efforts risk complicating the process of decisionmaking, especially when the patient with dementia has a different point of
view about his choices than his carer. In the early stages of dementia, many
patients are aware of their limitations, and of their negative impact on their
relationships with other people, including family caregivers (Michon,
Gargiulo, & Rozotte, 2003).
We recommend that education programmes about dementia also
include more training in interviewing skills, and communication techniques, to ensure that patients’ views are not overlooked and that their
rights to expression are respected as much as possible. Health care
professionals may underestimate the amount of control that they exert over
elderly patients, or how users feel about their participation in decisionmaking (Davies & Nolan, 2003; Tadd et al., 2002). This lack of awareness,
as well as time constraints or limited resources, may reduce the amount of
freedom accorded to older patients in general (Browne et al., 2002).
Some patients, in the earlier stages of dementia, have problems which
complicate communication such as word-finding difficulties, inattention
or slowed processing of speech; nevertheless our study shows that they are
often capable of engaging in interviews. It appears that more attention
should be paid to maintaining verbal communication when possible.
Studies from other countries have described simple and effective techniques to maintain verbal communication in the earlier stages of dementia
(e.g. Brodaty, Gresham, & Luscombe, 1997; Done & Thomas, 2001; Santo
Pietro & Ostuni, 1997). We recommend a wider dissemination of these
methods, to help those who work (formally and informally) with these
patients. Professionals who are trained to facilitate communication with
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dementia 5(4)
these patients are in a stronger position to explore their preferences and
respect their wishes.
These results give some encouraging indications about the feasibility
of interviewing patients with dementia about their involvement in
decision-making, an issue that is receiving more attention from researchers.
Future studies might target patients according to the types of decision they
have made recently, rather than requiring them to nominate a situation of
choice at the beginning of the research interview. More background information about the circumstances leading to and influencing the decision
would be useful (for example, to what extent did critical incidents or carer
stress influence the decision to seek outside help at home, or day care for
the patient?). In this way, specific types of choices can be studied, as well
as the circumstances affecting decision-making. It would be useful to know
the reasons why participants say that they were partially satisfied or dissatisfied with the various dimensions of choice. Is this because certain aspects
of professional intervention (e.g. information provision) have not been
understood or forgotten by the patient, or because of shortcomings in
professional practice? Such data would allow the formulation of more
specific recommendations for improving the support offered to patients
and their carers.
However, the difficulties we experienced with accessing this population
are a potential barrier for future studies. The fact that carers are often gatekeepers between researchers and patients with dementia has been noted by
those involved in drug-trials and clinical research studies. For this reason,
we suggest that more attention should be paid to identifying the factors
affecting carers’ willingness to allow their relative with dementia to participate in community-based research. They represent a growing population
who are likely to be the focus of different types of studies in the future,
and it is important to understand to what extent the difficult access is due
to concerns about patient well-being, time constraints, an unwillingness to
reflect on certain aspects of patient care, or other reasons.
Another issue that deserves investigation concerns the influence of both
gender and kinship when families are confronted by decisions about health
and social care. The majority of caregivers in our study were female daughters, although there was one husband-carer; we did not examine the influence of gender on responses, due to the relatively small number of
participants, and the paucity of male patients (five men out among 21
patients). Demographic studies of caregiver profiles in France and other
countries indicate that primary carers of patients with dementia are not a
homogenous group. Psychological studies of caregivers have highlighted
the diversity of perceptions of problems of dependence, stress and formal
care needs (e.g. O’Connor, Pollitt, Roth, Brook, & Reiss, 1990; Tyrrell,
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tyrrell et al.: freedom of choice
2004); these appear to depend partially on whether the patient is a spouse
or a parent, as well as sex differences in carer preoccupations (e.g. Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002; Zarit, Todd, & Zarit,
1986). Therefore, the involvement of patients with dementia and their
carers in decision-making may be influenced by gender, age or the nature
of the relationship, and larger scale studies could examine the impact of
these factors.
Future studies in this area should include data from the professionals
involved in the decision-making process. We did not study the opinions of
the formal caregivers (nurses, social workers, etc.) who had been involved
in these situations, but their views would have given more insight into the
choices being made, the circumstances surrounding each decision, and
their perceptions about each of the five dimensions explored within the
freedom of choice model. For example, the various dimensions of the
‘freedom of choice’ interview schedule could be adapted so that
professional carers could indicate to what extent they felt that they had
provided information, encouraged communication, etc. Also, it would be
useful to know more about the representations that these front line staff
have about the decision-making abilities of people who are diagnosed with
dementia, given that community-dwelling patients with dementia are
frequently interviewed and assessed in the presence of caregivers. It would
be interesting to explore the principles guiding their work with this
growing patient population. As we have previously mentioned, continuing
education about dementia is an emerging priority in France, but to date,
many health and social care workers have received little or no training about
how to optimize their work with this patient group. It is also not clear to
what extent they are aware of patients’ perceptions of being marginalized
during the process of decision-making.
A final point that deserves further attention concerns carer ratings of
patient functioning. In community-based studies of dementia, it is often
important to know to what extent the patient’s illness has affected his
everyday functioning; access to recent psychological or medical assessments is not always possible, and testing participants before interviews is
not always feasible or desirable. We chose GERRI, which is designed to be
completed by family caregivers, and indicates to what extent the patient
experiences difficulties in three domains of everyday psychological functioning (Schwartz, 1983). However, we found that responses to three items
in this rating scale are difficult to score when applied to patients at the early
stage of dementia. Neither the original article (Schwartz, 1983) nor the
French translation (Israel, 1997) indicate in which direction these items
should be scored, and it appears that the interpretation of these three
dimensions may be linked to whether the patient is at an early or advanced
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dementia 5(4)
stage of illness. The GERRI has been used in many published studies as an
indicator of dementia-related problems, but this issue has not been previously identified in the literature. We believe it deserves further attention,
as many community-based studies of patients with dementia will require
reliable and valid carer-rated indicators of patient functioning, especially
when recent psychological or medical data about cognitive status are
unavailable.
Conclusions
The issues of rights and liberties of people diagnosed with dementia are
complex, given the progressive nature of dementia, and the uncertainties
surrounding each patient’s cognitive capacities. An increasing number of
people are diagnosed at the earlier stages of dementia. It appears from our
study that their opinions are often overlooked, and their rights to information and free expression are fragile.
Our study suggests that more attention should be paid to recognizing
the abilities and rights of patients with dementia when decisions concerning their health or social care are being discussed. Patients in the earlier
stages of dementia are often capable of expressing meaningful opinions
about their preferences and preoccupations when choices are being made.
However, the presence of a family carer during decision-making may result
in the patient’s views being overlooked or unheard. Training programmes
for health-care professionals may need to include more information about
facilitating the expression of patient opinions, as well as explaining that a
diagnosis of dementia should not automatically compromise their participation in decision-making about their health or social care.
Acknowledgements
This study was financed by the Fondation de France, as part of a larger investigation in
collaboration with the late Professor Michel Frossard, economist at the Université
Pierre Mendès France. We thank Sandra Gherardi for her assistance with interviewing
the participants. We are grateful to the patients and carers who agreed to participate in
the research interviews and share their experiences of decision-making. We thank our
colleagues in the community-based services for older people within the department of
Isère (France) who helped to identify potential participants for the study.
Note
1. We observed problems in scoring three of the 49 items in the GERRI profiles.
Carers’ responses to items N° 39 (Patient wants to have his/her own way), N° 45
(Patient reports feeling optimistic about the future) and N° 46 (Patient appears to
be cheerful) were difficult to interpret, as they were sometimes indicative of
impaired functioning, or of a continuation of the person’s normal psychological
functioning. After considerable debate and reflection, we decided to omit these
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tyrrell et al.: freedom of choice
three items from the total GERRI scores as the meaning and scoring of these items
were judged to be ambiguous when applied to patients in the early stages of
dementia.
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Appendix
English translation of the ‘freedom of choice interview
schedule’ for each patient and his or her carer
(Based on schedule presented by Frossard, Boitard,
& Jasso-Masqueda, 2001)
Guidelines for the participant with dementia and the carer who are initially
interviewed together to identify a recent situation of choice:
We would like you to think of a recent occasion when you had to make a real
choice and take a decision about the care of X (the person with dementia). The
choice or decision may have been about a health issue, or about getting help
at home, or using health/social care for example.
Please describe the choice/decision you had to make (circumstances and type
of choice).
After the patient and his and her carer have identified and described the
situation involving their decision/choice, each party is interviewed individually to allow independent replies to the questions.
Version for the patient (alone)
1) In the situation which you have described (specify the choice and
decision), do you think that you were:
a)
b)
c)
d)
very well informed about the options;
moderately informed about the options;
not at all informed about the options;
I was not capable of being informed at the time.
2) In the situation which you have described (specify) when you had to
make a choice, do you think that you were:
a)
b)
c)
d)
very well listened to;
somewhat/partially listened to;
not at all listened to;
I was not capable of being heard at the time.
3) In the situation you have described (specify), a solution/option was
proposed to you. Do you think that you were able to express your opinion
about the possible solutions?
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a)
b)
c)
d)
I was able to express my opinion completely;
I was only partially able to express my opinion;
I was not able to express my opinion (lack of opportunity);
I was incapable of expressing an opinion at that time.
4) In the situation you have described (specify), would you say that your
decision was:
a)
b)
c)
d)
Well reflected upon; enough time to consider my choice;
Partially reflected upon; not enough time to consider my choice;
Not at all reflected upon; no time to consider my choice;
I was incapable of reflecting upon my decision at the time.
5) In the situation you have described, would you say that the chosen
solution was:
a)
b)
c)
d)
Very suitable for you, and you had no wish to change it;
Only partially suitable, but you were able to modify it as you wished;
Only partly suitable, with limited scope for modifying it;
Unsuitable for you, and irreversible.
Today, when you think of the choice you had to make, how would you rate
it on this visual scale, where 0 means you felt had no choice at all, and 10
means it was a completely free choice.
0
1
No choice
2
3
4
5
Moderately free choice
6
7
8
9
10
Completely free choice
Version for carer (interviewed alone)
1) In the situation which you have described (specify), do you think that
you were:
a) very well informed about the options; you had all the necessary information to help your relative;
b) moderately informed; or didn’t have enough information to help your
relative;
c) not at all informed, and you were unable to help your relative;
d) I was not capable of being informed at the time.
2) In the situation which you have described (specify), do you think that
you were:
a)
b)
c)
d)
very well listened to and thus able to reassure your relative;
somewhat listened to and only partially able to reassure your relative;
not at all listened to, and you couldn’t reassure your relative;
I was not capable of being listened to at the time.
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tyrrell et al.: freedom of choice
3) In the situation you have described (specify), a solution/option was
proposed to your relative. Do you think that you were able to express your
opinion about the solution(s):
a) I was able to express my opinion completely about the options proposed
to my relative;
b) I was only partially able to express my opinion about the solutions
proposed to my relative;
c) I was not able to express my opinion at all about the proposed solution
(lack of opportunity);
d) I was incapable of expressing an opinion at that time about the proposed
solutions.
4) In the situation you have described, would you say that:
a) You had enough time to reflect and help your relative to make a
decision;
b) You didn’t have enough time to reflect and help your relative to make
a decision;
c) You didn’t have time to reflect and help your relative to make a decision;
d) You were incapable of helping your relative to make a decision (irrespective of time).
5) In the situation you have described, would you say that the chosen
solution was:
a) very suitable for your relative, and you had no wish to change it;
b) only partially suitable for my relative, and you were able to modify it
as you wished;
c) only partly suitable for my relative, with limited scope for modifying
it;
d) unsuitable for your relative and you couldn’t change it (irreversible).
Today, when you think of the choice your relative had to make to make,
how would you rate his or her freedom of choice on this visual scale. 0
means you felt that he or she had no choice at all, and 10 means that he
or she had a completely free choice.
0
1
No choice
2
3
4
5
Moderately free choice
6
7
8
9
10
Completely free choice
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dementia 5(4)
Biographical notes
PhD is a graduate of Trinity College Dublin (Ireland), and is Senior
Lecturer at the Department of Psychology at Université Pierre Mendès France in
Grenoble (UPMF). Her teaching and research interests include: the psychological
and functional evaluation of older patients with dementia; stress in professional
and family caregivers; health psychology; and applications of gerontechnology.
Address: Laboratoire de Psychologie Clinique et Psychopathologique, UFR SHS,
1251 Avenue Centrale, Université Pierre Mendès France, 38040 Grenoble, France.
[email: [email protected]]
N AT H A L I E G E N I N MSc studied in France and West Virginia, and holds Masters degrees
in Health Economics, Social Protection and Ageing, and in International Economics
and Actors Strategy. She currently works as Coordinator of the Masters degree
programmes at the Department of Economics at UPMF in Grenoble. Her research
interests include economic aspects of decision-making in health and social care of
older people, and gerontechnology.
M I C H E L E M Y S L I N S K I PhD is Senior Lecturer at the Department of Psychology at
UPMF in Grenoble, having worked for many years as a clinical psychologist
specializing in geriatrics and ageing. Her teaching and research interests include:
psychoanalytic aspects of ageing; depression and dementia; psychodynamic issues
associated with family caregiving; and elder abuse.
JEANNE TYRRELL
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