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Attitudes towards Alzheimer's disease as a risk factor for caregiver burden

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 International Psychogeriatrics (2011), 23:9, 1451–1461 
C International Psychogeriatric Association 2011
doi:10.1017/S1041610211000640

Attitudes towards Alzheimer’s disease as a risk factor for

caregiver burden
.........................................................................................................................................................................................................................................................................................................................................................................

L. Zawadzki,1 K. Mondon,1 N. Peru,1 C. Hommet,1,2,3 T. Constans,1,2 Ph. Gaillard1,2

and V. Camus1,2,3
1
CHRU de Tours, Tours, France
2
Université François Rabelais de Tours, Tours, France
3
UMR INSERM U930 and CNRS FRE2448, Université François Rabelais de Tours, Tours, France

ABSTRACT

Background: There is abundant literature on the determinants of caregiver burden in Alzheimer’s disease (AD),
but little is known about the possible implication of specific patterns of a caregiver’s attitudes towards the
disease that could increase their risk of – or protect them from – emotional distress and burden. The aim of
this study was to test the hypothesis that negative attitudes towards AD are associated with an increased level
of burden experienced by caregivers of AD patients.
Methods: Family caregivers of 51 patients with AD were asked to complete a questionnaire regarding their
attitudes towards AD. In addition, we assessed the level of their quality of life, anxiety and depression as well
as their perceived level of burden. In parallel, we documented the patients’ characteristics: global cognitive
efficiency (Mini-Mental State Examination), behavioral and affective symptoms (Neuropsychiatric Inventory)
and functional level (Instrumental Activities of Daily Living).
Results: The score of caregiver burden was positively correlated with negative attitudes such as authoritarianism
(r = 0.41, p < 0.01) and social restrictiveness (r = 0.49, p < 0.001) as well as emotional reactions of anxiety
(r = 0.44, p < 0.01) and aggressiveness (r = 0.47, p < 0.001). In addition, scores of social restrictiveness,
rejection and anxiety were significantly higher in women than in men.
Conclusion: These results may have implications in terms of the prevention of caregiver burden. In particular,
educational and support programs for caregivers should not be limited to developing their knowledge and
skills but should also target attitudes towards the disease.

Key words: family caregivers, dementia, burden, attitude, Alzheimer’s disease

Introduction the type and severity of their non-cognitive behavi-

oral and psychological symptoms (Steeman et al.,
Concerns about Alzheimer’s disease (AD) and 1997). However, an increased risk of nursing home
related disorders have increased in Western societies admission is also associated with the level of burden
over the past decades, and the disease has become among informal caregivers (Yaffe et al., 2002).
a major public health priority in both developed Although the determinants of caregiver burden
and developing countries. The impact of the illness have become clearer, they have been mostly correl-
on both formal (Cocco et al., 2003) and informal ated with the patients’ characteristics such as be-
caregivers (Yaffe et al., 2002) is an important issue havioral and psychological symptoms (Donaldson
in the context of public health policies which aim et al., 1997; 1998; Heok and Li, 1997; Croog
to give high priority to home-care and community- et al., 2001; Black and Almeida, 2004; Berger et al.,
centered support for patients with dementia. Risk 2005). In particular, depression, apathy, anxiety and
factors for institutionalization of such patients have aggressiveness more than cognitive and functional
been shown to include the severity of cognitive de- declines are frequently reported to be associated
cline, its impact on activities of daily living, and also with an increased risk of burden (Coen et al.,
Correspondence should be addressed to: Dr. Luc Zawadzki, Clinique Psychiatrique
1997; Kaufer et al., 1998). More than the type
Universitaire and CMRR, CHRU de Tours, Boulevard Tonnellé, 37044 Tours of symptoms, it is their unpredictable nature that
Cedex 01, France. Phone: + 33 2 3437 8952; Fax + 33 2 4747 9701. Email: seems to have a significantly greater influence on
l.zawadzki@chu-tours.fr. Received 11 Oct 2010; revision requested 16 Nov
2010; revised version received 1 Mar 2011; accepted 7 Mar 2011. First
the increased risk of burden (Donaldson et al.,
published online 4 May 2011. 1998). In contrast, caregiver-related characteristics
1452 L. Zawadzki et al.
that could expose them to a higher risk of burden
have received much less attention. In particular,
to the best of our knowledge, there is no available
data assessing the link between the level of caregiver
burden and attitudes toward the disease. Attitudes
toward chronic diseases have emerged as key
factors in both the social impact of the disease
and the risks of stigmatization and discrimination
(Graham et al., 2003). Mental illnesses are still
poorly perceived by the general public for whom
the outcomes appear to be poor even when
correctly managed. In addition, patients suffering
from mental illnesses are deemed irresponsible,
unpredictable and dangerous, despite efforts to
improve knowledge and attitudes towards such
patients through specific anti-stigma educational
programs (Sartorius and Schulze, 2005).
With AD, it can be assumed that attitudes
toward the disease may also partially determine
caregivers’ investment in the care of their patients
and thereby increase the risk of – or protect
against – emotional distress and burden. Such a
hypothesis has several theoretical underpinnings.
First, we know from the “learned helplessness”
model (Seligman and Badeley, 1975) that the
cognitive attributional or explanatory style strongly
determines the way people cope with experiencing
negative outcomes or failures. As a caregiver,
experiencing a lack of success in controlling aspects
of the clinical presentation or outcome of the
disease may reinforce the view that no matter what
action is taken, nothing will change. On the other
hand, negative attitudes such as authoritarian or
rejecting attitudes could also be developed by the
caregiver as an attempt to escape from depression.
The caregivers’ stress model of Pearlin et al.
(1990) hypothesizes that stress is the consequence
of first line contextual elements (cultural and
socio-economic status, family network, personal
history), as well as some role strains (conflict
with job/family/social life and financial problems)
and some intra-psychic strains (self esteem, sense
of control). Stress arises against this general
background as the consequence of behavioral
disturbances or their psychological impact. We
can assume that attitudes shared among a social
group can be considered to be what Pearlin et al.
(1990) define as a first line contextual element.
Indeed, some psychological risk factors for caregiver
burden have already been studied in AD and in
other neurological disorders such as stroke. In
AD, the meaning attributed to “care” as well
as filial obligation, self-efficacy, demands of care,
involvement in care, and coping have all been
established as burden determinants (Noonan and
Tennstedt, 1997; Chou et al., 1999), while in
stroke an appraisal of caregiving has been linked to
carers’ psychological well-being and morale (Purk
and Richardson, 1994; Hodgson et al., 1996).
Additionally, data concerning attitudes toward AD
are available (Ngatcha-Ribert, 2004) and a feeling
of stigmatization has been established among AD
patients indicating unfavorable attitudes toward
them (Burgener and Berger, 2008). The aim of
this study was to assess attitudes towards AD in
caregivers of people with AD and their correlation
with the level of perceived emotional distress and
burden.
Methods
Selection of study population
We enrolled the caregivers of 51 patients who met
NINCDS-ADRDA diagnostic criteria (National
Institute of Neurological and Communicative
Disorders and Stroke and the Alzheimer’s Disease
and Related Disorders Association; McKhann et al.,
1984) for AD and who were living at home, because
home-dwelling AD patients are likely to receive less
professional support that those living in a nursing
home.
We collected data from the memory clinic and the
geriatric medicine inpatient ward of the University
Hospital of Tours, and from the memory clinics of
some local general hospitals in the central area of
France (Vendôme, Orléans, Romorantin, Chartres
and Amboise).
Procedures
We conducted a cross-sectional study and exclu-
sively used administered or self-report question-
naires for data collection.
Data regarding the clinical characteristics of
the patients were collected from each patient’s
medical records. These included information on
their functional status as assessed by the IADL
scale (Lawton and Brody, 1969; Israël, 1996), their
global cognitive performances through the MMSE
score (Folstein et al., 1975), and their behavioral
and psychological symptoms (NPI; Cummings
et al., 1994). We also recorded the time since the
first sign of the disease and the time since the first
visit to a memory center.
The caregivers were asked to answer a
questionnaire regarding their attitudes towards AD,
the level of burden they experienced, their quality
of life and the emotional distress they felt. Since
we could not find any questionnaire or scale
which broadly assessed caregivers’ attitudes towards
AD in the literature, we used a questionnaire
initially designed for studying schizophrenia (the
“Community Attitudes toward the Mentally Ill
Scale”; Taylor and Dear, 1981), because AD

shares several characteristics with schizophrenia,
such as its chronic pattern, its severe impact
on cognition and on autonomy in normal daily
living activities, and the potential stigmatization and
discrimination that can attach to those affected by
it. This tool comprises four subscales evaluating
four independent dimensions: authoritarianism,
benevolence, social restrictiveness and “community
mental health ideology”.
The “authoritarianism” subscale reflects the
more or less coercive image the caregiver has
of the patient, and the patient’s designation as
belonging to a “lower class” of society. It contains
ideas concerning the need to institutionalize
patients quickly, the difference between patients
and “normal people”, the importance of custodial
care and the belief that a patient’s symptoms
result from a lack of self-discipline and will. The
“benevolence” scale reflects the paternalistic and
compassionate components of the relationship,
inspired by religious or humanist considerations
– i.e. society is responsible for patient care and
should support patients sympathetically and kindly,
and that such care, wherever possible, should not
be custodial. The “community mental health
ideology” subscale deals with attitudes toward
patient care, and, in particular, the opportunity
to benefit from community care or, conversely,
the need a patient might have to be treated
in an inpatient facility. The values intrinsic to
this subscale involve the therapeutic role of the
community and acceptance of the principle of
de-institutionalized care. This subscale assesses
feelings regarding the impact of care facilities
on residential neighborhoods and the potential
danger felt by local residents in living near such
care facilities. Finally, the “social restrictiveness”
subscale assesses the level of threat the patient
represents to society based on the following themes:
the dangers posed by the patients; the need to
maintain a social distance; the lack of responsibility
and the “normality” of AD patients.
A high score on the scale corresponds to a high
intensity of each dimension. The scale comprises
40 statements, 10 for each of the four scales, with
each statement being rated on a Likert scale from
1 (do not agree at all) to 5 (strongly agree). We
tried to stay as close as possible to the original scale,
only substituting the terms “the mentally ill” with
“my relative” or “patients with the same problem
as my relative”. However, the original proposition
that “Anyone with a history of mental problems
should be excluded from taking public office” was
considered inappropriate in the context of AD and
was replaced by “My relative should lose the right to
vote”. The proposition “A woman would be foolish
to marry a man who has suffered from mental
Attitudes to AD and caregiver burden 1453
illness, even though he seems fully recovered”
was modified so as to become “A woman/man
would be foolish to marry my relative”. The
term “Alzheimer’s disease” was avoided because
in our study we tried to evaluate the percentage
of respondents who were aware of their relative’s
diagnosis. Unlike the original tool, we randomly
mixed the questions on the different subscales and
then reduced each subscale to a score of 100.
We also used questionnaires addressing care-
givers’ emotional reactions, their perceptions of
patient competencies and their perceived risk of
themselves having AD in the future (Werner
and Davidson, 2004; Werner, 2006). The first
questionnaire comprised a list of emotions that
Werner and Davidson used in a population
aged over 45 years in response to a clinical
vignette describing a patient with AD (Werner and
Davidson, 2004). This process was inspired by
Angermeyer and Matschinger (1996) who explored
reactions to various mental health problems. In
our study, respondents answered the question: To
what extent does your relative make you feel . . .
[followed by a list of 13 emotions]. Each
proposal was rated from 1 (not at all) to 5
(extremely). Emotions were then classified into
four groups following Werner (2006): rejection
(impatient, rejecting, disgusted, find him/her silly);
anxiety (scared, uncomfortable/restless, insecure,
discouraged, embarrassed); “prosocial” emotions
(compassionate, concerned, appalled, find him/her
sympathetic, desiring to help him); and aggression
(angry, irritated). Table 1 summarizes the
attitudinal and emotional subscales. Werner also
performed a survey in which participants were asked
use a Likert scale ranging from 1 (very capable)
to 5 (completely unable) to rate the abilities of
the person described in a clinical vignette in the
following areas: driving; making a financial decision;
participating in a medical decision; preparing a
single cup of tea, taking the bus alone; choosing
his/her own clothes (Werner, 2006). In our study,
we asked caregivers to rate these items with respect
to the patient they provided care for using the
following question: “To what extent is your relative
unable to . . .”. Finally, they were asked to rate
their perception of their own risk of one day being
diagnosed with one of these disorders, answering
the single question: “What do you think is your
own risk of one day having the same disease as your
relative?” (1 corresponds to “no risk” and 5 “high
risk”) (Werner, 2006).
We used the questionnaire developed by Thomas
et al. (2006) in the PIXEL study for the assessment
of quality of life of carers, which explores four
dimensions: the ability to cope with problems
generated by the patient, relationship to the
1454 L. Zawadzki et al.

Table 1. Definition and examples of items for each attitudinal/emotional subscales

AT T I T U D I N A L /
EMOTIONAL
SUBSCALES DEFINITIONS EXAMPLES OF ITEMS
....................................................................................................................................................................................................................................................................................................................

Authoritarianism The more or less coercive image of the Memory problems plaguing my relative are an
relation toward the patients and their illness like any other.
designation as a lower class citizen.
Contains ideas such as: My relative needs the same kind of control
- the need to institutionalize AD patients and discipline as a young child.
quickly
- the difference between AD patients and
normal people,
- the importance of custodial care
- the cause of AD
Benevolence Paternalistic and compassionate My relative is a burden on society.
characteristics inspired by religious or
humanist considerations. More tax money should be spent on the care
Contains idea such as: and treatment of patients with the same
- Responsibility of society for the care of AD problems as my relative.
patients
- Sympathetic and kindly attitudes
- People should want to become involved
- Care must not be custodial.
Community mental The opportunity AD patients have to benefit Citizens must accept the establishment of
health ideology from community care or conversely the facilities for patients with the same
need they have to be treated in an inpatient problems as my relative in their
facility. neighborhood to serve the needs of the local
Contains ideas such as: community.
- Therapeutic role of the community
- Acceptance of the principle of Having patients with the same problems as
de-institutionalized care. my relative living within residential
- Impact of AD facilities on residential neighborhoods might be good therapy but
neighborhood the risks to residents are too great.
Potential danger felt by local residents to live
near AD facilities.
Social The level of threat the patient represents My relative should not be given any
restrictiveness towards society.Contains ideas such as: responsibilities.
- Dangerousness of AD patients
- Maintenance of social distance My relative should lose the right to vote.
- Lack of responsibility
- Normality of AD patient.
Rejection Impatient, rejecting, disgusted, find him silly
Anxiety Scared, uncomfortable/restless, insecure,
discouraged, embarrassed
“Prosocial” Compassionate, concerned, appalled, find
emotions him sympathetic, desiring to help him
Aggressiveness Angry, irritated

environment, awareness of the situation, and item version of the General Health Questionnaire
perception of distress. This questionnaire contains (GHQ; Goldberg and Hillier, 1979; Bolognini et al.,
20 questions; each response that indicates an 1989) for assessing emotional distress. This latter
impairment in quality of life results in a loss of 5 questionnaire was originally intended to detect
points, with a maximum score of 100. The quality psychiatric “cases” in general medicine and has
of life is then evaluated in percentage terms, with been widely used in social psychiatry.
100% representing the best possible quality of life. This study was approved by the ethics
To evaluate the caregiver’s sense of burden, committees of our respective institutions. Written
we used the 22-item version of the Zarit Burden informed consent was obtained from both patients
Inventory (Zarit et al., 1985) as well as the 28- and caregivers. Self-assessment questionnaires
 Attitudes to AD and caregiver burden 1455

Table 2. Characteristics of patients according to gender

MEN n = 16 WOMEN n = 35 T O TA L n = 51

n AV G ± SD RANGE n AV G ± SD RANGE n AV G ± SD RANGE

............................................................................................................................................................................................................................................................................................................................

Age 16 75.7 ± 8.1 60–88 35 83.8 ± 5.5 71–97 51 81.2 ± 7.4 60–97
MMSE (0–30) 11 14.4 ± 5.4 5–24 28 16.7 ± 7.1 4–26 39 16.1 ± 5.9 4–26
IADL-4 (4–15) 16 12.2 ± 3.0 5–15 33 12.2 ± 2.3 7–15 49 12.2 ± 2.5 5–15
NPI Total (0–144) 16 35.1 ± 25.2 7–85 35 31.3 ± 23.4 1–95 51 32.5 ± 23.8 1–95
NPI Total, emotional impact 16 18.2 ± 11.7 4–38 35 14.1 ± 10.8 0–49 51 15.4 ± 11.2 0–49
(0–60)
Number of years since first 16 5.2 ± 2.9 2–12 29 4.6 ± 2.9 1–11 45 4.8 ± 2.9 1–12
sign of the disease
Number of years since first 15 4.2 ± 2.3 0–10 29 3.2 ± 2.7 0–11 44 3.5 ± 2.6 0–11
visit to a memory center

were then given to the caregiver who returned them consultation and the moment the caregiver filled-
by mail. The MMSE and NPI scores were obtained out the study questionnaire was 3.2 years (SD: 2.7;
from patient charts. When help was needed in the range: 0–11) (Table 2).
questionnaire or when data was missing (NPI), the The caregivers’ sample consisted of 17 men and
concerned caregiver was contacted by telephone. 34 women. Women were significantly (t test =
2.8795; p = 0.0059) younger (mean: 64.3 years;
Statistical analysis SD: 10.2; range: 48–85) than men (mean:
Statistical analysis was performed using Epi Info 74.5 years; SD: 14.7; range: 48–95). Twenty-six
software, version 3.5. The tests used were: t tests to caregivers (51%) were the spouses of the patients
compare all two-sample means, Whitney/Wilcoxon they cared for and 20 (39.2%) were children of
test when the t test assumptions were violated the patients involved. All spouses were living with
(“benevolence” and “community mental health the patient and six of the 20 caregivers who were
ideology” attitudes subscales; GHQ score); children were living with the patient (30%). Thirty-
ANOVA test to compare means, the Kruskal-Wallis two caregivers lived in an urban area (62.7%) and
test when ANOVA test assumptions were violated only four (8.3%) had moved to facilitate care-giving.
(GHQ score). Attitudes, emotions, perceived Only two caregivers (12.6%) spent more than 30
incompetence and perceived susceptibility of one minutes traveling to their care recipients. Thirty-two
day having AD were respectively linked with the were retired (62.7%), 3 were inactive (5.9%), 13
Zarit Burden scale, GHQ and PIXEL caregiver (25.5%) were working full-time and 3 (5.9%) were
quality of life scale scores using linear correlation working part-time. No socio-professional category
(Pearson’s coefficient). Significance was assessed was clearly over-represented while almost half of the
with uncorrected p values. caregivers (n = 22; 44%) had no formal education
beyond primary school (Table 3).
With respect to the degree of burden and
Results emotional distress, the GHQ score was 26.2 ± 13.2
The AD group consisted of 16 men (mean age: (range: 5–65) and 64.3% ± 20.1 (range: 20–100)
75.7 years; SD: 8.1; range: 60–88) and 35 women in the PIXEL study caregiver quality of life scale.
(mean age: 83.8; SD: 5.5; range: 71–97). Overall, There was a significant difference between men and
the mean patient age was 81.2 years (SD: 7.4; range: women in the Zarit Burden Scale (mean score for
60–97). They all had moderate to severe dementia women: 38.2 ± 14.0 and range 11–69; mean score
(mean MMSE: 16.1, SD: 5.9; range: 4–26). Their for men: 27.6 ± 17.0 and range: 3–57; t test =
level of functional decline was high (mean IADL–4: 2.3256; p = 0.0243). The difference in the total
12.2; SD: 2.5; range: 5–15). Most of the patients NPI score between men and women was also
had several behavioral and psychological symptoms significant (t test = 2.5831; p = 0.0128) (mean
(mean NPI total: 32.5; SD: 23.8; range: 1–95) for women: 38.3 ± 23.3 and range: 6–85; mean
which often caused emotional distress in their for men: 20.9 ± 21.3 and range: 1–95). The same
caregivers (mean NPI total, emotional distress: was true in the total NPI emotional impact score
15.4; SD: 11.2; range: 0–49). The mean onset (mean score for women: 17.8 ± 10.1 and range: 3–
of first symptoms was 4.6 years (SD: 2.9; range: 38; mean for men: 10.6 ± 11.9 and range: 0–49; t
1–11) and mean time between the patient’s first test = 2.2420; p = 0.0295)
1456 L. Zawadzki et al.

Table 3. Caregivers characteristics according to gender

MEN WOMEN T O TA L
n = 17 n = 34 n = 51

n % n % n %
.....................................................................................................................................................................................................................................................................................................................

Nature of relationship with the patient, n = 51

Husband/wife, n = 26 13 76.5 13 38.2 26 51.0
Son/daughter, n = 19 3 17.6 16 47.1 19 37.0
Brother/sister, n = 1 0 0 1 2.9 1 2.0
Grandchild, n = 0 0 0 0 0 0 0
Father/Mother, n = 0 0 0 0 0 0 0
Other, n = 5 1 5.9 4 11.8 5 10.0
Caregivers living with the patient, n = 51
Children, n = 20 3 75 3 18.8 6 30
Spouses, n = 27 13 100 14 100 27 100
Other, n = 4 0 0 2 50 2 50
Total, n = 51 16 94.1 19 55.9 35 68.6
Place of living: rural/urban, n = 51
City > 5000 inhabitants 10 58.8 22 64.7 32 62.7
Moving house to facilitate caregiving, n = 48
Yes 1 6.3 3 9.4 4 8.3
Time spent traveling to care for patient
<15 min, n = 10 1 10 9 60.0 10 62.5
15 min – 30 min, n = 4 0 0 4 26.7 4 25.0
>30 min, n = 2 0 0 2 13.3 2 12.6
Status of employment, n = 51
Employment = Yes 4 23.5 12 35.3 16 31.4
Full time, n = 13 4 23.5 9 26.5 13 25.5
Part Time, n = 3 0 0 3 8.8 3 5.9
Retired, n = 32 13 76.5 19 55.9 32 62.7
Inactive, n = 3 0 0 3 8.8 3 5.9
Flexible hours to help the patient, n = 48
Yes 4 25 7 21.9 11 22.9
Socio-professional categories, n = 51
Farmer, n = 2 1 5.9 1 2.9 2 3.9
Artisan/trader/entrepreneur, n = 2 0 0 2 5.9 2 3.9
Business/intellectual profession, n = 5 1 5.9 4 11.8 5 9.8
Intermediate profession, n = 1 0 0 1 2.9 1 33.3
Employee, n = 2 2 11.8 3 8.8 5 9.8
Workman, n = 1 0 0 1 2.9 1 2.0
Retired, n = 32 13 76.5 19 55.9 32 62.7
No occupation, n = 3 0 0 3 8.8 3 5.9
Educational level, n = 51
Did not finish primary school 3 17.6 4 12.1 7 14.0
Finished primary school 9 52.9 12 36.4 21 42.0
High school 3 17.6 6 18.2 9 18.0
College and beyond 2 11.8 10 30.3 12 24.0
Other 0 0 1 3.0 1 2.0

Mean scores for scales submitted to caregivers risk for the caregiver one day having AD, patient
for assessing their attitudes, emotional reactions, MMSE score, caregiver gender, caregiver gender
perceived level of patient competences and by class, place of residence (city or country),
perceived risk of having AD some day according employment status and each caregiver’s daily
to caregiver gender are described in Table 4. schedule, are shown in Table 5. Only significant
Results of the correlations between the Zarit results have been shown.
Burden Inventory, PIXEL caregiver quality of life In accordance with our hypothesis, some
scale and GHQ with attitudes, emotional reactions, attitudes and emotional reactions were correlated
perceived incompetence of the patient, perceived with scores of the Zarit Burden Inventory, PIXEL
 Attitudes to AD and caregiver burden 1457

Table 4. Description of attitudes

MEN N = 17 WOMEN N = 34

MEAN ± SD RANGE MEAN ± SD RANGE t TEST p

........................................................................................................................................................................................................................................................................................................................

ATTITUDES
Autoritarianism [20–100] 43.2 ± 8.7 34–68 47.2 ± 9.2 32–70 1.5013 0.1397
Benevolence [20–100] 87.7 ± 7.6 67–92 81.7 ± 7.6 30–90 3.3634§ 0.0667
Social restrictiveness [20–100] 41.4 ± 10.8 22.2–60 51.7 ± 12.0 26–82 2.9679 0.0046
Community mental health ideology [20–100] 91.1 ± 7.7 76–100 83.7 ± 13.9 30–98 4.6156§ 0.0121
EMOTIONAL REACTIONS
Rejection [20–100] 34.7 ± 12.3 20–65 43.6 ± 15.2 20–85 2.4636 0.0174
Anxiety [20–100] 44.2 ± 14.9 28–84 54.7 ± 16.4 20–76 2.2039 0.0325
Prosocial Reactions [20–100] 75.5 ± 13.8 56–96 70.9 ± 16.5 32–100 0.9950 0.3246
Agressiveness [20–100] 47.1 ± 28.0 20–100 48.4 ± 23.7 20–100 0.1819 0.8564
PERCEIVED INCOMPETENCIES
– Driving [1–5] 4.7 ± 0.7 3–5 4.7 ± 0.8 1–5 0.0761 0.9397
– Financial decision [1–5] 4.6 ± 0.9 2–5 4.7 ± 0.7 2–5 0.3825 0.7038
– Take the bus alone [1–5] 4.4 ± 1.1 2–5 4.6 ± 0.7 2–5 0.8162 0.4165
– To prepare tea [1–5] 3.0 ± 1.7 1–5 3.5 ± 1.7 1–5 0 .9291 0.3574
– Medical decision [1–5] 4.3 ± 0.9 2–5 4.4 ± 1.1 1–5 0.5280 0.5999
– Choice of clothes [1–5] 2.7 ± 1.5 1–5 2.9 ± 1.5 1–5 0.5207 0.6049
Overall incompetence score [20–100] 78.6 ± 17.6 36.7–100 81.6 ± 15.5 46.7–100 0.6104 0.5444
Perceived likelihood of having AD one day 2.5 ± 0.9 1–4 3.1 ± 0.8 1–5 2.6603 0.0106
§ Mann-Whitney/Wilcoxon two-sample test

study quality of life scale, and GHQ. Among individual by the caregiver, the heavier the burden
these attitudes, authoritarianism, benevolence, appears to be.
social restrictiveness, “community mental health The subscales addressing the four attitudes
ideology”, rejection, anxiety and aggressiveness appeared to vary on a continuum ranging from
were among the most strongly associated with “positive attitudes” to “negative attitudes”; the
burden and emotional distress variables. relevance of this division into subscales in our
framework is therefore questionable.
Regarding emotions, “aggression” and “anxiety”
correlated well with sense of burden and quality
Discussion
of life. This latter scale also correlated with the
Our study showed significant associations between “rejection” score. We found no correlation between
the Zarit Burden Inventory, GHQ and the PIXEL “rejected” emotions and burden, although for the
study quality of life scale scores, and levels of emotional attitudes, it seems to be an equivalent
several attitudes such as social restrictiveness, of “social restrictiveness” attitudes, which are
authoritarianism, benevolence, and community strongly correlated with burden. There was no
mental health ideology. These results support the significant correlation between emotions and GHQ.
hypothesis that there is a link between negative This suggests that these emotions are not due
attitudes and feeling of burden experienced by to symptoms of anxiety and depression but were
caregivers of AD patients. probably present prior to perceptions of the disease
Regarding caregiver attitudes, the authoritarian- and to the expression of burden. “Pro-social”
ism subscale correlated more with the PIXEL study emotions did not correlate with any of the quality
quality of life scale. Because custodial care is part of life, emotional distress and burden scales.
of the authoritarianism concept, an authoritarian This dimension was therefore quite distinct from
vision would result in a heavy investment in care, previous results, suggesting a certain amount of
particularly of time, and would allow the caregiver ambivalence in caregivers who experience both
to gain control over the patient, thus explaining positive and negative emotions. Anxiety was the
this first correlation. The Zarit Burden Inventory emotion that correlated most with quality of
correlated more with the social restrictiveness life, whereas aggressiveness correlated more with
subscale, which corresponds to the maintenance caregiver burden. This result should be compared
of social distance and an underlying denial of to the findings of Coyne et al. (1993) which linked
otherness. The less the patient is recognized as an burden and abuse. It should be underlined that, in
1458 L. Zawadzki et al.

Table 5. Correlations between burden, attitudes, emotional reactions and other characteristics
ZARIT BURDEN CAREGIVERS
I N V E N T O RY QUALITY OF LIFE % GHQ

C O R R E L AT I O N C O R R E L AT I O N C O R R E L AT I O N
COEFFICIENT COEFFICIENT COEFFICIENT
..............................................................................................................................................................................................................................................................................................

ATTITUDES
Authoritarianism [20–100] 0.41∗∗ −0.55∗∗∗ 0.42∗∗
Benevolence [20–100] −0.41∗∗ 0.37∗∗ −0.33∗
Social restrictiveness [20–100] 0.49∗∗∗ −0.36∗ 0.45∗∗
Community mental health −0.35∗ 0.37∗∗ −0.33∗
ideology [20–100]
EMOTIONAL REACTIONS
Rejection [20–100] 0.28 −0.32∗ 0.24
Anxiety [20–100] 0.44∗∗ −0.4∗∗ 0.20
Agressiveness [20–100] 0.47∗∗∗ −0.33∗ 0.10
Prosocial Reactions [20–100] 0.00 0.00 0.00
PERCEIVED INCOMPETENCES
Overall incompetence 0.28∗ −0.20 0.20
score [20–100]
Perceived susceptibility of 0.10 0.10 0.35∗
having AD one day
..............................................................................................................................................................................................................................................................................................

Mean ± SD Mean ± SD Mean ± SD

..............................................................................................................................................................................................................................................................................................

Patient MMSE ⎫
Light n = 18 28.3 ± 14.8 71.1 ± 18.0 ⎬ 25.6 ± 12.0
Mild n = 15 39.9 ± 17.2 53.0 ± 23.2 ∗ 30.7 ± 17.0
⎭
Severe n = 9 37.4 ± 12.4 63.8 ± 17.8 24.1 ± 10.5
Caregiver gender

Women 38.2 ± 14.0 61.6 ± 19.8 28.4 ± 13.6
∗
Men 27.6 ± 17.0 69.7 ± 20.3 22.0 ± 11.5
Caregiver age § ⎫ ⎫ ⎫
<58 years 26.8 ± 12.2 ⎬ 76.1 ± 14.2 ⎬ 18.5 ± 7.3 ⎬
58 – 78.5 40.6 ± 15.2 ∗ 57.2 ± 21.4 ∗ 31.6 ± 14.4 ∗
⎭ ⎭ ⎭
>78.5 years 31.3 ± 16.0 66.1 ± 17.7 23.8 ± 11.0
City > 5000 inhabitants

Yes 32.1 ± 16.8 59.5 ± 19.4 28.7 ± 14.7
∗
No 36.4 ± 14.9 72.4 ± 19.2 22.1 ± 8.9
Occupation
  
No 37.9 ± 7.4 59.6 ± 20.4 29.1 ± 14.1
∗ ∗ ∗
Yes 28.1 ± 11.7 74.7 ± 15.4 20.1 ± 8.3
(Mann-Whitney/
Wilcoxon test)
Caregiver occupation time ⎫ ⎫ ⎫
Partial 37.3 ± 6.0 ⎪⎪ 63.3 ± 17.6 ⎪
⎪ 30.0 ± 4.6 ⎪⎪
Normal 26.5 ± 12.2 ⎬ 77.3 ± 14.4 ⎬ 17.8 ± 7.2 ⎬
∗ ∗ ∗
Retired 36.4 ± 16.0 ⎪
⎪ 61.1 ± 20.6 ⎪
⎪ 28.0 ± 13.2 ⎪
⎪
⎭ ⎭ ⎭
No Activity 53.3 ± 15.0 43.3 ± 7.6 40.3 ± 21.9
(Kruskal Wallis
test)
∗ p < 0.05 ∗∗ p < 0.01 ∗∗∗ p < 0.001
§ Age classes correspond to first and third quartiles

our study, attitudes and emotions toward patients (Cossette et al., 1995; Mui, 1995; Donaldson and
appeared to be generally positive as testified by the Burns, 1999; Gallicchio et al., 2002). Furthermore,
means scores of these different variables. women had a more intense feeling of social
Similar to previously published results, we found restrictiveness, rejection and anxiety than men.
a greater burden score in women compared to men This finding is consistent with the hypothesis that

the associations found in the literature between
burden and caregiver characteristics are due to
links between these characteristics and more or
less negative attitudes. These attitudes may be
connected to the disease itself, but may also
correspond to a concept of the caring role (Noonan
and Tennstedt, 1997), or attributes of gender or
age for example, or a conception of the meaning
of life in general underpinned by religious or
philosophical issues (Farran, 1997). We can assume
that notions like “mothering” or “taking care
of” are usually associated with women. Women
may feel more trapped in this social order of
“caring” than men. In addition, they probably carry
this assumption as part of their social structure.
Consequently, this may result in an increased sense
of powerlessness, of inevitability, of obligation to
maintain this caring role, which could secondarily
induce rejection of the patient. In contrast, men
are less likely to view caregiving as an obligation
and so may feel freer to accept or reject this
task. For the same reasons, men with the most
favorable attitudes toward AD may accept the role of
caregiver more easily. In other words, this suggests
that only men with favorable attitudes become
caregivers and, in addition, after accepting this
role, they feel less compelled to continue, thereby
somewhat justifying more favorable attitudes of
rejection.
Our results support the argument that negative
attitudes towards AD are linked with an increased
level of burden. The present results do not
contradict the assumption that these attitudes can
therefore be considered as a predictive factor
of caregiver burden. An alternative explanation
may be that these attitudes are induced by the
stressful situation of caregiving and are in fact
coping strategies, which are unable to reduce the
burden linked with the behavioral and psychological
symptoms of dementia.
Our study has several limitations. First, the small
number of patient/caregiver dyads (51) recruited in
our study limits the possibilities of stratified analysis.
Secondly, our sample was recruited only in hospitals
(mainly outpatient clinics) and so cannot be
considered representative of all possible situations
and may consequently constitute a selection bias.
In addition, we limited our investigation to patients
who did not live in nursing homes, although
such environments can also generate burden. Most
importantly, we based our study on scales and
questionnaires which have not been validated for
use among AD patients and their carers. We
acknowledge that using scales outside their intended
context is a severe limitation. The “Community
Attitudes Toward the Mentally Ill Scale” (Taylor
and Dear, 1981), for example, was developed
Attitudes to AD and caregiver burden 1459
for schizophrenia and was based on two essential
assertions: that these patients are unpredictable and
that they are dangerous. As a result, some items may
be ill-suited to AD. But the adaptations we propose
here show good acceptability and feasibility, and
could be validated. Another shortcoming is the
fact that our study is a cross-sectional study.
A longitudinal study would have allowed us to
observe changes in burden and attitudes over
time. We should emphasize that a methodology
using questionnaires constitutes a desirability bias,
and probably leaves less room for ambivalence
and to nuances in the expression of attitudes in
general. In addition, it does not allow us to identify
whether an item is central or peripheral in the
structure of an attitude (Abric, 2003). Another
limitation may be the arbitrary choice of attitudes
used in our study, as listed in the “Community
Attitudes Toward the Mentally Ill Scale”. Finally,
we should mention the possibility that respondents
answered specifically in relation to their loved
one but not necessarily in relation to AD in
general.
Despite these limitations, our study constitutes
a preliminary exploratory investigation intended to
determine the innovative risk factors for caregiver
burden. Although it is difficult to determine whether
caregiver attitudes to AD were already present
before they took on a caregiving role or constitute
coping strategies, the dissemination of appropriate
information to caregivers through mental health
education programs seems to be an appropriate
approach for reducing the burden endured by
caregivers. These programs should target both
caregivers and the general population. Progressive
changes in attitudes can be strengthened by positive
reporting in the media and through educational
support. Another implication of these results is the
important role that psychotherapeutic interventions
can play, particularly when they focus on attitudes
such as authoritarianism and restrictiveness, by
confronting the underlying assumptions on which
attitudes are constructed.
Conflict of interest
None.
Description of authors’ roles
L. Zawadzki, V. Camus and C. Hommet designed
the study; L. Zawadzki, C. Hommet, K. Mondon,
T. Constans, V. Camus and N. Peru took part in the
recruitment of patients and wrote the paper; and P.
Gaillard and L. Zawadzki undertook the statistical
analysis.
1460 L. Zawadzki et al.
Acknowledgments
We wish to thank the following: Dr. Lemonnier
(Orléans); Dr. Ishac (Vendôme); Dr. Yvon
(Romorantin); Dr. Naceur (Amboise); Drs. Gibelin
and Vaccaro (Chartres).
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