Freedom of choice and
decision-making in health and social care
Views of older patients with early-stage dementia and their carers
J E A N N E T Y R R E L L Université Pierre Mendès France N A T H A L I E G E N I N Université Pierre Mendès France M I C H E L E M Y S L I N S K I 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
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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 empha- sized 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 high- lighted 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 resi- dents 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,
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 care- giving (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.
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 applic- able 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 excludingelderly patients from studies of user satis- faction 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 communi- cation 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
of life (Brod, Stewart, Sands & Walton, 1999; Mozley et al., 1999). Further- more, 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 community- based 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 hospi- talization, 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
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 cogni- tive, 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 partici- pant’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);1neverthe- less, they were all able to participate in the interviews and give meaning- ful 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.
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.
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 Type of decision
functioning ———————————————————————————————
Overall Accepting help Going to day Admission to (n= 21) at home centre residential care
(n= 8) (n= 5) (n = 8)
Cognitive 74 76 67 75
Social 56 55 54 57
Emotional 19 18 18 20
Totals x= 148* x= 149* x= 140* x= 151*
* Total mean GERRI scores were rounded to the nearest whole number Note: Increasing scores indicate poorer levels of psychological functioning
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
0 2 4 6 8 10 12
Very well informed
Moderately informed
Not at all informed
Not able to be informed
Frequency
Patient Carer
Figure 3 Patient and carer views about the possibility of expressing their opinion Figure 2 Patient and carer views about being listened to by professionals
Figure 1 Patient and carer views about the information received from professionals
0 5 10 15
Very well Not at all
listened to
Moderately
listened to listened to
Not able to be listened to
Frequency
Patient Carer
0 5 10 15 20
Complete expression
Moderate expression
No possibility of expression
Incapable of expressing an opinion
Frequency
Patient Carer
Figure 6 Distribution of scores concerning perceived level of free choice (patients and carers)
Figure 5 Reversibility of choice: patient and carer perceptions
Figure 4 Possibility of reflecting upon the choice before making a decision: patient and carer views
0 5 10 15
Thoroughly considered
Not at all considered
Incapable of reflecting
Frequency
Moderately considered
Patient Carer
0 1 2 3 4 5 6 7 8 9 10
Decision suited me;
No wish to change
Partly suitable, but I could
change it
Partly suitable, and I could only partially change it
Unsuitable choice, no possibility
of changing
Frequency
Patient Carer
12 10 8 6 4 2 0
Frequency
0 1 5 6 10
No choice at all
Moderately free
Completely free choice Patient
Carer
2 3 4 7 8 9
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
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 percep- tions 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 partici- pants 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 real- life 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 satis- fied 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
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 resi- dential care was the most constrained of the three types of choices examined. Nevertheless, patient involvement in decision-making is import- ant, 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
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 resi- dential 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 consider- able 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 inter- views 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 decision- making 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 partici- pants had higher levels of freedom than the average person with dementia,
given that most patients in the original target groups did not have the possi- bility 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 experi- ences 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 methodologi- cal 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 surround- ing 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 follow- ing 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’ under- standing 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 paramed- ical 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
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 meaning- ful 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 meaning- ful dialogueis 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 decision- making, 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 tech- niques, 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 decision- making (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 tech- niques 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
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 infor- mation 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 partiallysatisfied or dissat- isfied 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 gate- keepers 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 partici- pate 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 daugh- ters, although there was one husband-carer; we did not examine the influ- ence 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,
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. Gallic- chio, 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 assess- ments 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 func- tioning (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
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 previ- ously 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 infor- mation 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 concern- ing 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 partici- pation 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
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 indi- vidually 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) very well informed about the options;
b) moderately informed about the options;
c) not at all informed about the options;
d) 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) very well listened to;
b) somewhat/partially listened to;
c) not at all listened to;
d) 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?
a) I was able to express my opinion completely;
b) I was only partially able to express my opinion;
c) I was not able to express my opinion (lack of opportunity);
d) 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) Well reflected upon; enough time to consider my choice;
b) Partially reflected upon; not enough time to consider my choice;
c) Not at all reflected upon; no time to consider my choice;
d) 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) Very suitable for you, and you had no wish to change it;
b) Only partially suitable, but you were able to modify it as you wished;
c) Only partly suitable, with limited scope for modifying it;
d) 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 2 3 4 5 6 7 8 9 10
No choice Moderately free choice 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 infor- mation 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) very well listened to and thus able to reassure your relative;
b) somewhat listened to and only partially able to reassure your relative;
c) not at all listened to, and you couldn’t reassure your relative;
d) I was not capable of being listened to at the time.
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 (irre- spective 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 2 3 4 5 6 7 8 9 10
No choice Moderately free choice Completely free choice
Biographical notes
J E A N N E T Y R R E L L 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: Jeanne.Tyrrell@upmf-grenoble.fr]
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.
