Patient Education and Counseling 70 (2008) 220226

www.elsevier.com/locate/pateducou

Telling the truth in dementiaDo attitude and approach

of general practitioners and specialists differ?
Hanna Kaduszkiewicz *, Cadja Bachmann, Hendrik van den Bussche
Institute of Primary Medical Care, University Medical Centre Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
Received 13 March 2007; received in revised form 6 October 2007; accepted 21 October 2007

Abstract
Objective: The prevailing opinion in the literature that disclosing the diagnosis of dementia to patients is important is not always put into practice.
The purpose of this study was to investigate differences between GPs and specialists (neurologists and psychiatrists) in the German ambulatory care
system concerning the disclosure of the diagnosis of dementia.
Methods: Thirty in depth interviews with randomly selected GPs were conducted. On this basis a standardised questionnaire was developed and
sent to 389 GPs and 239 neurologists and psychiatrists.
Results: The postal survey revealed only minor differences between GPs and specialists, both groups being equally in favour of a timely
disclosure. For example, 70% of the GPs and 77% of the specialists strongly agreed that patients with dementia should be informed early because
of the possibility to plan their lives. This positive attitude is pronounced among younger physicians, but is somewhat contradicted by difficulties in
the communication with patients expressed in the interviews. In the interviews, what may be described as a double taboo emerges, in that GPs
describe taboo topic areas related to dementia for them and for their patients.
Conclusion: The postal survey shows the two professional groups to be very much in favour of a timely disclosurean attitude that is pronounced
among younger physicians. These findings can be interpreted as a recent change of attitudes regarding the disclosure of the diagnosis of dementia in
the medical profession.
Practice implications: Training opportunities are needed in order to overcome communication obstacles in the doctorpatient-communication
about dementia.
# 2007 Elsevier Ireland Ltd. All rights reserved.

Keywords: Dementia; Alzheimers disease; Diagnosis; Physicianpatient relationship; Disclosure

1. Introduction and 53% in favour of disclosure. Two recent reviews concluded

General practitioners (GPs) are sometimes criticized for a
presumed nihilistic attitude towards dementia, as demonstrated
by underdiagnosis [15], delayed diagnosis [68], and/or
insufficient communication with patients and their caregivers,
especially with regard to the disclosure of the diagnosis [911].
This criticism often implicitly assumes a more dedicated and
effective approach from the side of the specialists. However, the
evidence for this assumption is low. Up to now, studies on
diagnosis disclosure by professionals have focussed on a single
professional group, be it GPs [4,1217], geriatricians [18,19],
psychiatrists [1922] or nurses [23]. The studies on GPs
attitudes or reported practice show percentages between 39%
* Corresponding author. Tel.: +49 40 42803 3247; fax: +49 40 42803 3681.
E-mail address: kaduszki@uke.uni-hamburg.de (H. Kaduszkiewicz).
that some one-half of the physicians is in favour of diagnosis
disclosure and the other-half is not [24,25]. Comparative
studies investigating the question as to whether GPs truly differ
from specialists in this respect are few, as only two small-scale
studies on this topic were found. In a survey on 35 Scottish
consultants in the field of geriatric psychiatry and 35 GPs, a
small majority of the psychiatrists indicated that they were in
favour of informing the patients whereas most GPs felt that
patients should be kept in the dark. This difference was not
statistically significant [26]. Conclusions from this result are
limited on account of the small sample size. The second study, a
postal survey of GPs, psychiatrists, neurologists and geria-
tricians in Italy suffered from very low response rates (15%,
16%, 23% and 28%). The limited sample size and the
unevenness of representation of GPs and specialists did not
permit inferences to be made regarding differences between the
two professions [27].

0738-3991/$ see front matter # 2007 Elsevier Ireland Ltd. All rights reserved.
doi:10.1016/j.pec.2007.10.010
 H. Kaduszkiewicz et al. / Patient Education and Counseling 70 (2008) 220226
The purpose of the present study was to systematically
investigate the differences between GPs and specialists
neurologists and psychiatristsin the German health care
system with regard to their attitude and approach to the disclosure
of the diagnosis dementia. A comparison of GPs and
specialists is of interest, as in the German health care system
GPs and specialists compete with each other. The German health
service is of a social insurance type (Bismarkian) on the side
of the clients combined with a controlled market system on the
side of the providers [29]. Physicians in ambulatory care work as
entrepreneurs in a market characterized by unlimited direct
access of patients to all disciplines without any gatekeeping. Task
descriptions and competence delineations do not exist for the
single medical disciplines. The results of this study provide
empirical data to be used as the basis for improved commu-
nication between GPs and specialists concerning the disclosure
of dementia as a diagnosis.
2. Methods
This study combines a qualitative and a quantitative
approach. In order to elicit the attitudes of GPs, thirty semi-
structured individual interviews were conducted by GP
research fellows with randomly selected GPs in the towns of
Hamburg and Dusseldorf. Questions focused on the process of
care, i.e. how the suspicion of dementia arises, what next steps
the GP undertakes and how he communicates suspicion,
diagnostic and therapeutic steps with patients and relatives.
Interviews were audiotaped, transcribed and analyzed accord-
ing to the procedure described by Mayring [28]. In brief, this
procedure consists of inductive development of categories and
deductive application of prior formulated, theoretically derived
aspects of analysis. The procedure was performed indepen-
dently by two raters who, in a second-step, discussed all results
and reached a consensus in case of inconsistencies. In the
results section the number of interviewees who reflected the
specific issues are presented in brackets. This was done in order
to gain some sense of frequencyalthough, the data are drawn
from semi-structured interviews and not from a standardized
survey.
Based on the results of the interviews a 49 item standardized
questionnaire on the following aspects of ambulatory care of
people with dementia was developed: general attitude towards
dementia care, diagnostic process, therapy, disclosure to
patients, interaction with caregivers, quality of usual care,
cooperation between professionals. The questionnaire con-
sisted of statements to be rated on a six point Likert-type scale
(1, does not apply at all; 6, applies very well). In the analysis
presented here, scores were grouped as follows to rank the
degree of assent/dissent (1 + 2, does not apply; 3 + 4,
partially applies; 5 + 6, applies very well). Time need to
complete the questionnaire was assumed to be 15 min. Nine
items were related to diagnosis disclosure (see Table 2). Results
on other topics will be published later.
Ten of the interviewed GPs and research staff with GP
qualification piloted the questionnaire and commented on its
content. The questionnaire was sent to all 129 GPs who are
221
members of the German Competence Network Dementia
(CND; return rate 84%), 260 randomly selected GPs (return
rate, 40%)all GPs not having been interviewed earlierand
239 randomly selected neurologists and psychiatrists working
in ambulatory care (return rate, 40%). The study was conducted
in six towns (Hamburg, Dusseldorf, Bonn, Leipzig, Mannheim
and Munich) and their surrounding areas, thus covering the
metropolitan areas of the country relatively well. The return
rates were achieved after one reminder by telephone. Fifty-
three percent of the responding specialists were psychiatrists
and neurologists, 32% were psychiatrists, 10% neurologists and
4% had other equivalent specialisations. Due to the fact, that a
specialist in psychiatry or neurology usually spends a
prolonged period of postgraduate training in the sister
discipline, boundaries between the two disciplines are blurred.
Therefore subgroup analyses were not appropriate and the term
specialists is used for the whole group in the present study.
Since no differences were found between the GPs belonging to
the German Competence Network Dementia and those not
belonging to it, results are presented as a comparison between
GPs and specialists, using the MannWhitney U-test for the
calculation of differences between the two professional groups.
3. Results
Table 1 shows the demographics of the participating doctors
in the interviews and in the postal survey. Approximately, one
third of the participants in each group were women, a
percentage corresponding to their representation in ambulatory
care. The GPs reported caring for a number of 15 dementia
patients on their premises and 10 in nursing homes (median
values). Specialists saw 40 patients on their premises, only
(median value).
3.1. Results of the interviews
In the interviews the GPs emphasized the difficulties in
communicating the diagnosis to the patients. GPs described
taboo topic areas related to dementia for them and for their
patients.
Patient reaction patterns range from total refusal in
admitting cognitive deficits to aggressiveness. The following
explanations for such resistances on the side of the patient were
offered by the GPs:
 Fear of becoming dependent (6 interviewees):
People get older and they are aware of the problems
accompanying old age. (. . .) A lot of people say If I am
not in a position to think any more, then I will become
dependent on my daughter or, given that no family is
present, then a nursing service will come and swaddle
me. (A-15-A-60)
 Fear of being stigmatized as crazy (5 interviewees):
Interviewer: How do the patients react to the disclosure
of the diagnosis?
222 H. Kaduszkiewicz et al. / Patient Education and Counseling 70 (2008) 220226
Table 1
Demographics of participants in interviews and postal survey
N 30
Female
Male
Working years in ambulatory care (mean  S.D.)
Median of dementia patients cared for in premises
Median of dementia patients cared for in nursing homes
a
Thirty-eight percent of the specialists did not provide information on this question.
b
Data not collected.
GP: They partially block off. They contradict and
claim: No, thats not true; Im not soft in the head. Im not
insane. and they feel as if I had accused them. (A8-A-84)
 Feelings of shame (4 interviewees):
These patients try to appear very fit in the consultation;
men especially try to convey that everything is fine. And
they are not willing to answer questions (on their cognitive
performance). (A28-A-16)
While they do not directly employ the term taboo,
physicians describe many situations and reasons for not (fully)
informing the patient themselves:
 Fear of inflicting damage on the patient (12 interviewees):
This [patient] suffered greatly. She said that she feared
becoming more and more idiotic; thats the reason why I
think to myself what is the use of telling her? (A5-A-166)
I would never say that the existing personality will at
some point be eradicated. That is over the limit, something
that I just wouldnt say. Not even to the relatives. This
knowledge is important for me as a doctor, but it must
remain in the head and heart of the doctor. It would destroy
the patient. How can someone ever recover from such
knowledge? (A26-A-68)
 Opinion that disclosure carries no benefit for the patient (6
interviewees):
When it comes to diseases where there are no sound
therapeutic options the question must be asked: what is the
benefit of (. . .) the diagnosis to me and what do I gain
when the patient knows everything? (A2-A-210)
I also think that non-disclosure is all right as long as the
patient doesnt suffer and is in some way happy and
nothing bad happens. (A20-A-186)
 Fear of ruining the doctorpatient-relationship (6 intervie-
wees):
I avoid conflict with the patient. I dont want him to get
angry and I dont want to lose him as my patient. Its not
for financial reasons; every patient I lose will be replaced
by another, but for me mutual trust is very important. And I
think that such a disclosure can be very offending for the
patient. (A20-A-182)
Interviews Postal survey
GPs GPs Specialists
211 96
37% 38% 36%
63% 62% 64%
12.8 ( 8.0) 13.8 ( 7.3) 9.8 ( 7.0)a
b
15 40
b
10
 Feeling that the patient would not understand the diagnosis
anyway (6 interviewees):
Dementia diagnosed in early stages is seldom. When it
is diagnosed the patient doesnt understand the diagnosis
and its implications, anyway. And then I simply explain
it with forgetfulness and concentration problems.
(A27-A-44)
 Uncertainty about the course of the disease (5 interviewees):
I remember one patient where I thought that it would be
better if he no longer drove his car. Funny enough, after a
while he recovered without any medical intervention. That
means that I was wrong. (A11-A-18)
The GPs also described several strategies to circumnavigate
their problem when talking about dementia (21 interviewees).
Instead of dementia or Alzheimer, they use attenuating
circumscriptions like normal aging process or circulatory
disturbances of the brain. A further strategy is to attribute the
symptoms to another disease, a strategy also used to motivate
patients to seek further diagnosis:
In that case I forward the hypothesis that the patient has
circulatory problems. And when I say, the heart and the
blood pressure should be checked, these usual shabby
arguments, they are sufficient to motivate people, mostly.
(A30-A-26)
In the interviews, only a minority of GPs (5 interviewees)
favoured full disclosure. Those in favour showed a strong
general attitude towards disclosing diagnoses:
A diagnosis is an offer, not a verdict. The offer shows to
what extent the patient can accept and is able to cooperate.
(. . .) The patients only have the possibility to decide for
themselves when we talk about the issue with them (about
AD). When we hide (the problem), then they have no
chance. Thats why we are always in favour of an early
diagnosis. (A1-A-58)
3.2. Results of the postal survey
The results for all disclosure items are presented in Table 2
for the two professional groups.
 H. Kaduszkiewicz et al. / Patient Education and Counseling 70 (2008) 220226 223

Table 2
Diagnosis disclosure items by profession
Item GPs Specialists p-Value
a a a a
Median Mean S.D. n Median Mean S.D. n
1 Disclosing diagnosis and prognosis does more harm than good 2 2.43 1.33 210 2 2.26 1.22 96 0.365
to the patient
2 Most patients are grateful when I address their cognitive decline 4 3.93 1.36 209 4 3.99 1.25 95 0.867
3 Patients react with shame when their cognitive deficits are addressed 4 3.73 1.37 210 4 3.96 1.26 95 0.221
4 When communicating the diagnosis to the patient I never use 4 3.93 1.76 209 3 3.36 1.66 95 0.005**
the term dementia
5 When communicating the diagnosis to the patient I never use 4 3.91 1.68 209 3 3.38 1.66 95 0.011*
the term Alzheimer
6 I only disclose when the patient demands it 2 2.51 1.57 209 2 2.53 1.53 95 0.794
7 Patients with dementia should be informed early because of 5 4.88 1.31 208 5 5.03 1.07 94 0.686
their possibility to plan their lives
8 I inform the relatives more in detail than the patient on the 5 4.91 1.21 210 5 4.95 1.21 96 0.836
course of the disease
9 Addressing the relatives I avoid the true diagnosis and I prefer 2 2.02 1.31 210 1 2.08 1.51 96 0.613
to use terms like senility or perfusion problems
p: Statistical significance of difference between GPs and specialists (MannWhitney U-test, **, p < 0.01; *, p < 0.05).
a
Range 16, 1: statement does not apply at all, and 6: statement applies very well.

In contrast to the interviews, a majority of GPs favoured a
full disclosure in the postal survey. The survey shows both
professional groups to be largely and equally in favour of timely
diagnosis disclosure (items 1, 6, 7). For example, 70% of the
GPs and 77% of the specialists strongly agree that patients
with dementia should be informed early because of their
possibility to plan their lives ( p = 0.686).
However, the answers to the questions addressing the
process of diagnosis disclosure point at a more complicated
view which corresponds to the findings in the interviews. For
example, both groups strongly confirm that they inform the
relatives in more detail than the patient on the course of the
disease (item 8; p = 0.836). Also, relatives are not left with
unclear terms (item 9; p = 0.613), whereas the terms dementia
and Alzheimer are not used by a third of the specialists (32 and
30%) and by almost half of the GPs (47 and 44%) when
communicating with the patient (items 45; p = 0.005 for
dementia and p = 0.011 for Alzheimer). Further, only 39%
of the GPs and 37% of the specialists strongly agree with the
statement that patients are grateful when the physician draws
attention to their cognitive impairment (item 2; p = 0.867). In
contrast a large proportion of the GPs strongly (35%) or
partially (40%) confirm that most patients feel ashamed when
being confronted with signs of cognitive impairment. Results
for the specialists are similar (38% strong and 46% partial
confirmation; item 3; p = 0.221).
The differences between GPs and specialists were small. As
specified above the only statistically significant difference
concerning disclosure found was that specialists reported to use
the terms dementia and Alzheimer more often in the
communication with the patient. Another difference relates to
training interest: GPs express an interest in further training
concerning communication with dementia patients and their
relatives more often than specialists (50% of the GPs versus
30% of the specialists; p < 0.001; see Fig. 1).
A logistic regression analysis with the nine items on
diagnosis disclosure as target variables and controlled for
gender, specialisation, years in practice, and number of
dementia patients seen, shows a greater reservation of older
doctors towards diagnosis disclosure: they tend to regard
disclosure of dementia as more harmful ( p < 0.001), to
disclose only when the patient demands it ( p = 0.001), to use
the terms dementia and Alzheimer less ( p < 0.05) than their
younger colleagues and to inform the relatives in more detail
than the patients ( p < 0.05). Gender differences were weaker
but showed in the same direction, e.g. female doctors felt more
strongly that the patients react with shame when confronted
with cognitive decline ( p < 0.01) or tended to regard disclosure
as more harmful ( p < 0.05) compared to male doctors.
Specialisation and number of dementia patients seen did not
contribute statistically significantly to the model.

4. Discussion and conclusion

4.1. Discussion

This study is the first one of adequate size that systematically

compares attitudes and approaches of GPs and specialists
Fig. 1. Agreement to I would like to participate in a training program on concerning disclosure of dementia. In summary, the postal
management and communication with AD patients and relatives. survey shows that the self-reported differences between GPs
224 H. Kaduszkiewicz et al. / Patient Education and Counseling 70 (2008) 220226
and neurologists and psychiatrists in ambulatory care concern-
ing disclosure of dementia are minor. Minor, i.e. not statistically
significant differences related to disclosure between GPs and
specialists were also found by Wolff et al. for Scotland [26]. In
fact, the only statistically significant differences concerning
diagnosis disclosure found in the present study indicate that
specialists are somewhat less reluctant to use the terms
dementia or Alzheimer. This result is in line with a study on
carers reporting more explanation of the terminology by
psychiatrists than by GPs [30] and the survey of Wolff et al.
[26].
The postal survey shows the two professional groups to be
equally very much in favour of a timely disclosure and
reporting similar problems in practice. This result differs from
the majority of studies, which showed greater reluctance both
for GPs [4,1217] and for specialists [1822,26]. This
difference may partly be due to a recent change of attitudes
regarding dementia in the medical profession. Also, a
recruitment bias in the sense that more dedicated and
interested physicians took part in the postal survey may be
responsible.
This basic positive attitude towards disclosure in the postal
survey is somewhat questioned by the communication
difficulties described, e.g. the tendency to inform the patient
less than the relatives, a phenomenon also shown in other
studies [4,13,14,31] or to avoid the terms dementia or
Alzheimer [20,3,18,32]. The results of the interviews under-
line the impression of existing communication difficulties. The
specific reasons for not informing the patient derived from the
interviews also confirm the results of other authors and
reviewers [15,33,24,25]. Thus, in this study the mix of methods
(triangulation) was helpful in explaining the divergence of a
positive attitude towards disclosure on the one side and e.g.
informing the relatives more than the patient on the other side.
The interviews allowed more insight into the complexity of the
disclosure of dementia.
In fact, the large majority of the interviewed GPs described
a communication process, which can be characterized as a
double taboo setting comparable to the conspiracy of
silence described for schizophrenia [7,34], a setting in
which both patients and GPs show a mutual behaviour aiming
at not perceiving the disease and its consequences fully.
The concept of the double taboo derived from the
interviews appears to be a handy model to describe not only
the problems of the patients concerning disclosure of
dementia but also the problems of the GPs, which seem to
interact with each other.
In line with other studies, the present study indicates greater
disclosure difficulties in female physicians [35,36]. The data
analysis also revealed significant differences between younger
and older physicians, indicating a greater reservation of older
doctors towards diagnosis disclosure. This also confirms the
findings of other studies [4,14].
In contrast to GPs, neurologists and psychiatrists seem less
interested in training programs related to communication with
patients and relatives. This difference can be attributed to
differences in postgraduate training but also to task differences
between the GP and the specialist within the diagnostic chain in
Germany. A referral to a specialist usually takes place at the end
of a longer period of uncertainty and awaiting, both on the side
of patient and relatives and the GP himself. The explicit reason
for referral is then to obtain an unequivocal conclusion about
the diagnosis, a situation in which communication has a clear
subject. This role may be perceived as less incriminatory by the
specialists, resulting in a reduced interest in training programs
on communication.
Our study has several limitations. Although relatively
large, the samples are probably not representative for the total
professional groups. Participants stem from metropolitan
areas, thus excluding the perspectives of physicians in rural
and remote areas. As stated earlier, the samples might consist
of more dedicated and interested members of the professional
groups. Postal survey and interview techniques have limits
when the aim is to document real behaviour. This is especially
the case in a problem loaded topic like diagnosis disclosure in
the case of dementia. The higher rate of positive attitudes
towards disclosure among GPs in the postal survey in
comparison to the results of the interviews may be due to the
phenomenon of social desirability in answering question-
naires. Thus, over-reporting of positive attitudes may be
inherent to a standardized questionnaire. Semi-structured
interviews on the other handespecially when performed by
fellow GPs as in this studymay produce a situation of
informal consent (we all know), allowing for more
reflective and self-critical opinions on the part of the
interviewed GPs. These possible pitfalls stress the importance
of addressing research questions by means of a combination
of various methodological approaches in the sense of
triangulation [37].
4.2. Conclusion
The postal survey shows the two professional groups to be
very much in favour of a timely disclosurean attitude that is
pronounced among younger physicians. These findings can be
interpreted as a recent change of attitudes regarding the
disclosure of the diagnosis of dementia in the medical
profession. However, this study also shows various commu-
nication difficulties regarding an open disclosure of the
diagnosis dementia to patients: the interviews revealed
problems on both the patients and the GPs side (double
taboo), the postal survey provided more indirect references to
problems, e.g. the tendency to inform the patient less than the
relatives or to avoid the terms dementia and Alzheimer.
These difficulties demonstrate the need for suitable strategies
for disclosure and for corresponding training schemes.
Without disclosure of the diagnosis, a systematic information
process concerning the course of the disease and the
forthcoming problems and burdens related to it appears
impossible. Bearing this in mind, it is understandable, yet
nonetheless disturbing, that caregivers report that the
information provided by health professionals on the course
and prognosis of the disease is even scarcer than information
concerning the diagnosis [31,3840].
 H. Kaduszkiewicz et al. / Patient Education and Counseling 70 (2008) 220226
4.3. Practice implications
Training opportunities considering the specific tasks of the
GP and the specialist within the diagnostic chain are needed in
order to overcome communication obstacles in the doctor
patient-communication about dementia. These training oppor-
tunities also need to address the taboo on the doctors as well as
the patients side.
5. Confirmation
We confirm all patient/personal identifiers have been
removed or disguised so the patient/person(s) described are
not identifiable and cannot be identified through the details of
the story.
Conflicts of interest
None.
Acknowledgements
Thanks to Dr. Sinje Sperber and Astrid Groell for their
contributions to the development of the instruments and the
data collection. The study was funded by the German Federal
Ministry of Research (BMBF) within the German Competence
Network Dementia (Grant nr. 01GI0420).
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