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ORIGINAL ARTICLE

Cognitive Behavioral Group Intervention


for Alzheimer Caregivers
Serena Passoni, MSc,* Loretta Moroni, MSc,w Alessio Toraldo, PhD,z Manuela T. Mazzà, MSc,*
Giorgio Bertolotti, PhD,w Nicola Vanacore, MD, PhD,y and Gabriella Bottini, MD, PhD*z

lowest in Europe, as 82.8% of those patients live with their


Abstract: Long-term caregiving of patients with Alzheimer disease family.4 The prolonged care of patients with dementia
(AD) frequently induces a relevant distress enhanced by inadequate induces physical and psychological symptoms in caregivers
coping strategies. This study aimed to explore the impact of cog- who become socially hidden patients themselves. This
nitive and behavioral therapy (CBT) group intervention on AD
patients’ caregivers. In particular, reduction in caregivers’ global
syndrome together with wrong coping strategies may
care needs and in anxiety and depression has been investigated. develop affective disorders such as depression and
About 100 caregivers were divided into the following groups: CBT anxiety.6–9
group intervention, self-help manual, and control have been Randomized controlled trials to define proper guide-
enrolled in the study. CBT group intervention seems to be more lines for dementia care demonstrate that when caregivers
effective than the other 2 conditions in reducing caregivers’ anxiety. are supported, patients’ severity symptoms reduce, emer-
Furthermore, only caregivers of the CBT group showed significant gency care services are limited, and institutionalization is
needs related to reduction in care. The proposed treatment could be delayed, with a potential reduction in the overall costs in
the core of a more structured and systematic intervention for AD the time course.10–14
patients’ caregivers in Italy.
A recent review15 analyzing evidence-based psycho-
Key Words: dementia, caregivers, cognitive-behavioral group logical treatments for reducing distress and improving well-
therapy being of caregivers of old relatives with cognitive or
physical impairment identified the following as effective
(Alzheimer Dis Assoc Disord 2014;28:275–282) interventions: (1) Psychoeducational programs; (2) Multi-
component interventions (using a combination of at least 2
approaches, such as education, family meetings, and skill

D ementia, a public health problem with relevant costs to


society, has major consequences for both patients and
relatives.1 People suffering from dementia are currently
building); and (3) Psychotherapy (cognitive behavior in
focus). The efficacy of a short (9 wk) cognitive-behavioral
intervention has also been shown.16
over 35 million, although it is estimated that they will This cognitive-behavioral therapy (CBT) is very dif-
double every 20 years to arrive at 115.4 million in 20502 fuse in the United States. This kind of approach that must
(World Alzheimer Report, 2009), with a consequent sig- be provided by a psychologist emphasizes on the relevance
nificant burden on health care services, although the most of educational interventions to improve caregivers’ aware-
relevant impact will be on the informal caregivers. ness of their problems. This support requires individual
Informal cost provided by the family is often higher interview, written information, and educational meetings
than the formal one. A recent review reports an annual with families with the same problem.17
median total care cost of h28,000 (year 2005 values) in This cognitive-behavioral approach grounds on the
Europe.3 In Italy, the direct costs median value for each hypothesis that, the more the disease knowledge, the better
patient (medical aids and visits, care services, drugs) is the efficacy of the strategies in coping with problems caused
h14,886, arriving to h60,905 if also considering the indirect by the disease.
costs (working-time loss of patients and caregivers).4 Recently, the need to implement psychosocial supports
Italy, compared with other European countries, to AD patients’ caregivers has also become urgent in
mainly relies on the informal care provided by the family, Europe.18
depending on the coexistence of economic and sociocultural A number of Italian studies indicate the efficacy of
factors.5 As a consequence, the number of Alzheimer dis- educational programs in reducing distressing symptoms in
ease (AD) patients living in residential homes is one of the caregivers of AD patients with relevant behavioral dis-
orders.19,20 Self-help groups, in particular, have been pro-
Received for publication December 24, 2012; accepted February 5,
ven to improve the quality of life, reducing psychological
2014. morbidity, and delaying patients institutionalization.21
From the *Cognitive Neuropsychology Center, Niguarda Ca’ Granda Studies on CBT programs with Italian AD patients’
Hospital, Milan; wPsychology Unit, Salvatore Maugeri Founda- caregivers are still lacking.
tion, IRCCS Tradate, Varese; yNational Centre for Epidemiology,
Surveillance and Health Promotion, National Institute of Health,
We aim to evaluate the impact of a cognitive-behav-
Rome; and zDepartment of Brain and Behavioural Sciences, ioral group intervention in reducing anxiety and depression
University of Pavia, Italy. in these caregivers compared with a nontreated control
The authors declare no conflicts of interest. group. We also compared 2 approaches, a psychoeduca-
Reprints: Serena Passoni, MSc, Cognitive Neuropsychology Center,
Niguarda Ca’ Granda Hospital, Piazza Ospedale Maggiore 3,
tional program, providing written information about the
Milan 20162, Italy (e-mail: serena.passoni@gmail.com). disease and some suggestions concerning the control of
Copyright r 2014 by Lippincott Williams & Wilkins stress symptoms, and a cognitive-behavioral psychotherapy,

Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014 www.alzheimerjournal.com | 275
Passoni et al Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014

delivering the same written documentation associated with hosting Institution (the U.V.A. of the Niguarda Ca’ Granda),
group sessions conducted by a psychologist and a psycho- caregivers who did not join the CBT meetings (OM and CO
therapist, both trained in the use of CBT techniques. conditions) could just be evaluated 6 months apart (guidelines
of the CRONOS project). Routine CBT meetings, instead,
METHODS typically last for 3 months. Therefore, we could not randomize
caregivers in the 3 conditions by means of the awaiting-list
Procedures technique, because, to do so, we should have artificially pro-
We patients with dementia and their caregivers were longed awaiting lists to 6 months (which would have been a
recruited along 18 months at the Alzheimer Evaluation reason for ethical concern, given that the possibility to join
Unit (Unità Valutazione Alzheimer: U.V.A.) of Niguarda CBT meetings is a routine service to improve the quality of
Ca’ Granda Hospital in Milan, where patients are moni- care of Niguarda Ca’ Granda, a public hospital). Therefore,
tored every 6 months with a neurological and a neuro- we could only randomize the CO versus OM conditions
psychological assessment, according to the ministerial between caregivers who did not join the CBT meetings.
project CRONOS (currently shared by the U.V.A. at Caregivers learned about the possibility to join CBT
national level with the A.I.F.A. 85 note, the Italian Drugs meetings by means of a notice board and advertisements
Agency). shown in Hospital waiting rooms and in the Hospital
The enrollment period lasted 18 months (from March newspaper. In the 18-month period of data collection, 45
2010 to September 2011). caregivers applied to attend the CBT meetings; 6 of them
Inclusion criteria of patients were: (i) a diagnosis of AD were excluded as they did not meet the inclusion criteria (2
according to the Work Group on Dementia criteria for the low educational level criterion and 4 as they were
(National Institute of Neurological and Communicative not principal caregivers).
Disorders and Stroke, Alzheimer Disease and Related Dis- Another 63 caregivers were asked to participate in the
orders Association Work Group: NINCDS-ADRDA),22 study during the scheduled visits of patients at the U.V.A.
and (ii) the administration of acetylcholinesterase inhibitors After the psychological assessment, these 63 caregivers were
(AChEI) in a stable dose for at least 6 months. randomly assigned (by means of computer-generated ran-
Caregivers were excluded when (i) they had inadequate dom numbers) to the OM and CO groups; 30 caregivers
educational level (conventionally stated as <3 y); (ii) were entered the former, and 33 entered the latter group (Fig. 1).
not native Italian speakers; and (iii) were not related to the These patients provide a written informed consent to par-
patient (eg, institutional caregivers, friends, etc.). When >1 ticipate in the study.
caregiver met these criteria, we selected the one who spent  Caregivers of the Group Treatment (GT) condition were
most hours a day with the patient (principal caregiver). further subdivided into closed groups of 7 to 10
participants, joining six 2-hour meetings every 15 days,
Study Design in an overall period of approximately 3 months. They
The study has been conducted as a clinical com- received the manual “Helping those who care” at the first
parative trial. We planned to have 3 conditions: (i) care- meeting and filled in the psychometric measures at the
givers joining the CBT meetings (Group Treatment, GT baseline and at 6 months of follow-up.
condition); (ii) caregivers only receiving our manual (Only  Caregivers of the Manual (OM) condition received the
Manual, OM condition); and (iii) control caregivers (CO same manual and filled in the psychometric measures at
condition). Owing to practical constraints posed by the the same above-mentioned times.

FIGURE 1. Flowchart of study design. AD indicates Alzheimer disease; CO, control; GT, group treatment; OM, only manual.

276 | www.alzheimerjournal.com r 2014 Lippincott Williams & Wilkins


Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014 CBT Group Intervention for Alzheimer Caregivers

 Caregivers of the control (CO) condition did not receive “Needs of knowledge around the illness” subscale of the
any additional treatment or informative material, but Family Strain Questionnaire.
filled in the psychometric measures as the above 2
groups. “Helping Those Who Care” Manual
All the AD patients followed up by the enrolled To develop the self-help handbook for caregivers, we
caregivers were administered with a neurological and neu- followed the structure of cognitive-behavioral manuals that
ropsychological evaluation at the beginning of the study. have been developed for other physical disorders, such as
Baseline and follow-up data are gathered by inde- stroke,33 or psychological disorders, such as depression.34 A
pendent and blinded interviewers for OM and CO groups. first draft of the manual was tested by a focus group of AD
patients’ caregivers who, after having read it, discussed on
the completeness of the contents and clarity of the concepts
Measures expressed.
Cognitive global functioning of patients was assessed The result of the focus group lead to the production of
through the Mini-Mental State Examination (MMSE),23,24 the final version of the manual “Helping those who care”
a 30-point screening scale used to assess the severity of (42 pages long), which consists of the following sections:
cognitive impairment. The Italian cut-off for the Italian
population is 24/30.24 Stages of Dementia, and Caregivers’ Problems
The autonomy in basic daily living activities [Instru- In this section, we addressed the potential stages of
mental Activities of Daily Living25 (IADL)] and in caring of evolution of dementia and provided an overview about the
one’s own person [Activities of Daily Living26 (ADL)] have main welfare problems that may arise at every stage of the
been formally assessed as well. The physical ADL (range disease. A few sentences collected from the focus group, as
score, 0 to 6) includes basic capacity demands for autonomy, well as a story by the daughter of an AD patient are
such as dressing, personal hygiene and grooming, bowel and included, with the purpose of communicating closeness and
bladder management, and self-feeding. The IADL (range empathy with the reader.
score, 0 to 8) includes more complex skills needed to live
alone such as shopping, cooking, doing housework, doing the
laundry, using the phone, using transport, managing money,
Advice for the Management of Everyday Life
In this section, useful and detrimental behaviors
and taking medications as prescribed.
toward the patients are discussed, with examples obtained
The Anxiety and Depression Scale-Reduced Form
from the focus group. Appropriate communication modal-
(AD-R) was also administered to assess caregivers’ psy-
ities are suggested, together with some tips to motivate and
chological status. This schedule has been validated for
help the patient to keep learning and practising residual
patients in rehabilitation settings, consisting of 15 items
abilities (Skinner reinforcement theory). The suggestion is
(range score, 0 to 15) of the Depression Questionnaire-
finally provided to write a diary specifying the behaviors
Reduced Form27,28 (QD-R) and 10 items (range score, 10 to
that led to good results, as well as those that failed to ach-
40) of the State Anxiety Inventory-Reduced Form29,30
ieve them. The purpose of the diary, in addition to teaching
(STAI-X3).
a technique of self-monitoring, is to induce a critical view on
The Caregiver Need Assessment31 (CNA) has been
the specific relationship between caregiver and patient and
used to assess caregivers’ needs related to care. Such a scale
provide precious instructions for other caregivers.
was built to investigate the needs related to the assistance
perceived by the caregiver of a patient with high level of
disability, and was statistically validated with a sample of Take Care of Themselves
226 family caregivers (24.3% men) of 197 (50.8% men) This section addresses the caregivers’ needs. It stresses
patients admitted in neuromotor rehabilitation depart- the importance of taking care of oneself, and not only of the
ments following stroke, traumatic brain injury, lateral patient, as the caregiver’s psychophysics health is a pre-
amyotrophic sclerosis, Parkinson, or other diseases. The requisite for optimal caregiving. Information is provided
questionnaire is composed of 17 items ranging on a 4-point about how to recognize humoral dysphorias or depression
Likert scale (0 to 3). The overall score (range, 0 to 51) symptoms by means of self-monitoring, and how to fight
estimates the perceived total needs related to informal care; them (eg, by avoiding vicious circles triggered by negative
higher scores indicate higher needs. Needs can also be thoughts, and promoting distraction and enjoyable activ-
analyzed with reference to 2 CNA subscales, each showing ities). The suggestion is made to program at least 1 pleasant
good internal consistency: “Needs for emotional and social activity per day. Clues for managing stressful situations are
support” (Cronbach a = 0.765) and “Needs for informa- also provided: cognitive restructuring can help the reader to
tion and communication” (Cronbach a = 0.742). Examples recognize stressful situations that produce dysfunctional
of items from these 2 subscales are “I need a psychological thinking, such as catastrophic thoughts. Practical tips are
counseling (eg, for sorrows, troubles, or fears I am feeling)” provided as to how to manage psychophysical overload (eg,
for the Needs for emotional and social support, and “I need creating and maintaining a social network that is friendly
to easily contact the team which is nursing my relative” for and supportive, practicing relaxation exercises), as well as a
the Needs for information and communication. set of guidelines to encourage proper sleep hygiene. The
The 2 subscales show a high test-retest reliability reader is also encouraged to involve other people in the
(r = 0.942 and 0.965, respectively). Rossi et al32 observed a care, both inside and outside the family.
positive correlation between the “Needs of emotional and
social support” CNA subscale and other questionnaires Behavioral and Psychological Symptoms of Dementia
measuring psychological well-being (STAI-X3,30 QD-R,27,28 This section describes some of the major psychological
and Family Strain questionnaire32), and between the “Needs and behavioral disorders shown by the AD patients, such as
of information and communication” CNA subscale and the disorientation, depression, aggression, agitation, wandering,

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Passoni et al Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014

insomnia, delusions, and hallucinations. Tips as to how to analysis of variance (ANOVA), when the required stat-
manage each symptom are provided. istical assumptions were met, and by means of the Kruskal-
Wallis test or the w2 test otherwise.
The Management of the Home Environment The differences in the psychometric measures between
This section provides directions to change the home the pretreatment and the posttreatment phase (after 6 mo)
environment, guaranteeing safety and quiet, reducing the were analyzed by means of ANOVA, with Time (pretreat-
perception of disability, respecting the dignity of the indi- ment vs. posttreatment) as a within-subjects factor and
vidual, his/her privacy, and residual abilities. Treatment (OM, GT, CO) as a between-subjects factor. If
significant main effects or interactions were found, appro-
Support for the Family priate comparisons between pretreatment and posttreat-
We list the care services available in the territory that ment or between groups were carried out by means of
may serve as a relief for the family of a patient suffering t tests. Given that potentially interesting effect sizes were
from AD, such as the day center, domiciliary assistance, not known a priori, we could not compute a sample size on
nursing homes, and rehabilitation clinics, which offer the grounds of power considerations. Hence, the number of
possibility of temporary relief. Caregivers are then shown caregivers was not planned in advance.
how to obtain disability declarations and carer’s allow-
ances. Access to critical Italian laws, regarding assistance, RESULTS
social integration, and rights of people with severe dis-
abilities, is provided, as well as to other legal aspects con- Sample Characteristics
cerning the care. Addresses of some Italian Associations We recruited 102 patients (42 men and 60 women) with
aimed at AD patients and their caregivers are included, as a dementia status of AD, as assessed by the Alzheimer
well as a series of in-depth readings for each section of the Evaluation Unit (U.V.A.) of Niguarda Ca’ Granda Hos-
manual. pital. Sociodemographic characteristics are reported
in Table 1.
The CBT Group Intervention The 3 groups did not differ significantly in any of the
The group has been led by a psychologist and a cog- following variables: sex, age, dementia severity at baseline
nitive-behavioral psychotherapist, both trained in the neu- (MMSE corrected for Age), Activity of Daily Life scores
ropsychology of cognitive decline. (ADL), the Instrumental ADL subscale (IADL), and
The setting of the intervention was a quiet and com- duration of dementia status.
fortable room, appropriately lit, with some chairs arranged We recruited only 1 family member per patient, the
circularly around a table, inside the U.V.A. of the hospital. primary caregiver (generally husband/wife, or son/daugh-
The method has been derived from CBT techniques ter; in 1 case, a sister), reaching an overall number of 102
applicable in a group setting, starting with a psycho- caregivers. Their characteristics are reported in Table 1.
educational approach supported by the manual “Helping The only differences between the 3 groups of caregivers
those who care.” Thus, meetings were structured following concern needs related to care as reported in the CNA ques-
the different section of the manual, as described in the tionnaire, both in the overall score (CNA-tot) and in each of
previous section. Caregivers were asked to read the manual its 2 subscales (“needs of emotional and social support,”
at home, and then to share their opinions and questions CNA-1, and “needs of information and communication,”
during the meetings. In these, general information about CNA-2). The GT group had a higher CNA-tot score than
the disease was given to stimulate and promote the care- the other 2 groups (GT-OM: Mann-Whitney, z = 2.478,
givers’ awareness of the patient’s level of damage. The focus P = 0.013; GT-CO: Mann-Whitney, z = 3.558, P < 0.001);
was initially set on the members’ daily problems related to the OM and CO groups did not differ significantly. As for the
care: the direct confrontation between group members subscales, the same pattern was found for CNA1, whereas
promotes the sharing of their daily difficulties, and helps significance was reached only by the GT-CO comparison on
them to use more effective behavioral models. The use of the CNA-2 score.
self-observation diaries has been shown to be useful in We found no difference between the 3 caregiver groups
providing a common ground for discussion to detect dys- in terms of sex (w22 = 1.823, P = 0.402), kinship (w26 = 5.931,
functional thoughts and to monitor the caregivers’ coping P = 0.431), living situation (w22 = 1.182, P = 0.554), and
strategies and problem-solving abilities. working status (w26 = 6.835, P = 0.336).
The identification and control of dysfunctional
thoughts, through cognitive restructuring techniques, was Effectiveness of the CBT Treatment
useful to ameliorate caregivers’ coping strategies and
problem-solving abilities, and to detect mechanisms of self- Effectiveness of the Treatment on CNA Score
analysis necessary to increase their empowerment decision ANOVA showed a significant Time Treatment
in problematic situations with the patients. interaction on the score regarding the total CNA score
Some practical tips such as the rise of a friendly and (F2,99 = 7.553, P = 0.001). The source of the interaction is
supportive social network, practicing relaxation exercises, evident in Figure 2: caregivers who participated in the CBT
or leisure suggestions are offered; indeed, such factors may group treatment (GT group) showed a significant reduction
protect caregivers from cardiovascular risk in terms of in the needs related to care (t38 = 4.392, P < 0.001),
impaired endothelial function and catecholamine levels.35,36 whereas both the OM group (t29 = 1.511, P = 0.142) and
the control group (t32 = 1.669, P = 0.105) failed to show a
Data Analysis significant reduction, with the latter group, if anything,
SPSS 17.0 was used for statistical analysis. The dif- showing an opposite trend (an increase of the needs with
ferences between the 3 experimental groups in the socio- time). Although both the GT and the OM groups showed
demographic characteristics were evaluated by means of a larger reduction of needs than the control group did

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Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014 CBT Group Intervention for Alzheimer Caregivers

TABLE 1. Characteristics of the Sample at Baseline


Group Treatment Only Manual Control (CO)
(GT) (N = 39) (OM) (N = 30) (N = 33) Statistics P
Patients
Sex
Male 20 11 11 w222.734 0.255
Female 19 19 22
Age 76.8 (7.1) 79.6 (6.7) 79.3 (7.8) F2,99 = 1.568 0.214
MMSE corrected 17.5 (6.6) 18.6 (6.3) 20.4 (4.2) Kruskal-Wallis 0.318
w22 = 2.288
ADL 4.4 (1.6) 4.1 (1.7) 4.3 (1.6) Kruskal-Wallis 0.76
w22 = 0.549
IADL 3.7 (2.4) 2.9 (2.1) 3.4 (2.3) Kruskal-Wallis 0.361
w22 = 2.038
Duration of dementia 31.2 (23.1) 34.6 (24.9) 39.4 (20.7) Kruskal-Wallis 0.344
status (mo) w22 = 2.135
Caregivers
Sex
Male 12 12 8 w22 = 1.823 0.402
Female 27 28 25
Age 58.9 (12.9) 56.5 (12.2) 60.1 (13.1) Kruskal-Wallis 0.334
w22 = 2.196
Resources
No aids 13 6 10 w22 = 1.36 0.507
Helped by 26 23 23
someone
Day center 0 1 0
CNA tot 38.0 (7.6) 32.8 (8.8) 27.9 (12.3) Kruskal-Wallis 0.001
w22 = 14.349
CNA-1 18.7 (4.3) 15.1 (5.5) 13.2 (7.5) Kruskal-Wallis 0.002
w22 = 12.299
CNA-2 19.3 (4.1) 17.7 (4.5) 14.7 (6.2) Kruskal-Wallis 0.003
w22 = 11.712
STAI-X3 (anxiety) 24.9 (6.3) 24.1 (6.1) 23.7 (6.6) Kruskal-Wallis 0.722
w22 = 0.65
QD-R (depression) 4.2 (2.8) 2.8 (3.0) 3.4 (2.8) Kruskal-Wallis 0.098
w22 = 4.638
Significant P-values are reported in bold.
ADL indicates Activities of Daily Living; CNA, Caregiver Need Assessment; IADL, Instrumental Activities of Daily Living;
MMSE, Mini-Mental State Examination; QD-R, Depression Questionnaire-Reduced Form; STAI-X3, State Anxiety Inventory-
Reduced Form.

(GT vs. CO: F1,70 = 8.872, P = 0.004; OM vs. CO: P = 0.011), but it was similar in the OM and CO groups
F1,61 = 4.937, P = 0.03), the difference between the (F1,61 = 0.379, 1-tailed P = 0.27).
improvement in the GT and OM groups failed to reach
significance (F1,67 = 1.814, P = 0.183). Effectiveness of the Treatment on QD-R Score
We performed the same analysis on the CNA-1 and No significant Time Treatment interaction was
CNA-2 scores separately, and obtained virtually identical found regarding the caregiver’s mood (F2,99 = 0.784,
results and graphical profiles to those from CNA-tot. The P = 0.459). Neither did we observe significant time changes
only discrepancy was that in CNA-2 (needs of information within groups, or differences between groups (Fig. 4).
and communication) the Treatment  Time interaction
while comparing the OM and CO groups fell short of sig-
nificance (F1,61 = 3.651, P = 0.061). DISCUSSION
Difficulties experienced by caregivers of AD patients
are widely reported in the literature.7,8,37 In this study, we
Effectiveness of the Treatment on STAI-X3 Score studied the effects of CBT on the reduction in the emotional
The ANOVA on the caregiver’s level of anxiety discomfort experienced by caregivers.
showed a Time Treatment interaction very close to sig-
nificance (F2,99 = 3.04, P = 0.052). Interesting profiles Perceived Needs
emerge from such an interaction (Fig. 3): GT caregivers We found that caregivers in the full-treatment group
were the only ones with a significant reduction in the anx- (GT), who joined the CBT meeting and also received a
iety level (GT: t38 = 3.276, P = 0.002); no such trend was manual, showed a reduction in the scores of perceived needs
found in the other 2 groups (OM: t29 = 0.661, P = 0.514; (CNA); this reduction was smaller in the caregivers of the
CO: t32 = 0.212, P = 0.833). The improvement was larger “only manual” (OM) group, and turned, if anything, to an
in the GT than in the OM group (F1,67 = 2.848, 1-tailed increase of needs in the control (CO) group. The full-
P = 0.048) or in the CO group (F1,70 = 5.511, 1-tailed treatment (GT) condition proved to be effective in reducing

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Passoni et al Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014

FIGURE 2. Total CNA score (mean and standard error) at base- FIGURE 4. QD-R (depression) score (mean and SE) in the 3
line and after 6 months, in the 3 experimental conditions. CNA experimental groups across time (at baseline and after 6 mo). CO
indicates Caregiver Need Assessment; CO, control; GT, group indicates control; GT, group treatment; OM, only manual; QD-R,
treatment; OM, only manual. Depression Questionnaire-Reduced Form.

caregivers’ perceived needs, and would thus seem to be the emotional care, whereas GT caregivers presented with a
most suitable intervention to the purpose. However, in higher levels of needs with respect to the other 2 groups.
addition, caregivers of the OM condition showed a reduc- This result was expected by design, in that the GT group
tion in perceived needs with respect to the CO group, and joined the CBT meeting on voluntary basis, and a full
the difference between the improvement in the full-treat- randomization was not possible because of practical con-
ment group and the group who received only the manual straints (see the “Study design” section). Clearly, caregivers
failed to reach significance. Nonetheless, whereas the willing to attend the meetings were more aware of their
improvement in the GT group was 4.33 points, the OM needs and their difficulties in the role. It is noteworthy that
group showed half as large an effect (2.1 points): failure to that such initial difference does not seem to be due to the
detect such a difference might be a matter of power in various degree of mental deterioration of the patients: the
samples with very large internal variability. MMSE scores of the patients were comparable in both
Therefore, we may assume that the crucial component groups. We therefore believe that these differences are
producing needs reduction is the availability of information rather associated with the interindividual variability of the
focused on the disease management, either provided by a caregivers’ personality profile, in line with previous
manual, or conveyed in group meetings sessions. research.11
One interpretation problem might arise concerning the Despite such initial differences, and critically for the
initial levels of perceived needs, which were different in the purpose of our work, the GT group showed a relevant
3 caregiver groups. Indeed, the CO and OM groups showed reduction in the perceived level of needs after 6 months,
a similar level of needs for both informational and with respect to the CO group. Such a differential change
cannot be attributed to ceiling or floor effects, as mean
scores are very far from both (Fig. 2), and therefore the
inference that this interaction can be attributed to the dif-
ferent experimental conditions, and not (only) to the dif-
ferential initial motivation in the 2 groups can be derived.
One might argue that it is exactly motivation that induced a
decrease in the level of needs in the GT group; however, this
hypothesis is falsified by the results concerning the OM
group: although OM caregivers were as motivated as CO
caregivers (indeed OM and CO conditions were randomly
assigned), OM showed a change in CNA, which was not
shown by CO (see Fig. 2 and related text)—again, a result
consistent with the view that the content of the CBT, which
was faithfully reported in the manual, is critical for the
reduction in needs.
Anxiety
Group intervention seems to be effective in reducing
caregivers’ anxiety with a significant decrease in the GT
FIGURE 3. STAI-X3 (anxiety) score (mean and SE) in the group only as the other groups remained stable in their
3 experimental groups across time (at baseline and after 6 mo). emotional distress index. The crucial variable in reducing
CO indicates control; GT, group treatment; OM, only manual; anxiety does not seem to be the availability of structured
STAI-X3, State Anxiety Inventory-Reduced Form. information per se (as the OM group did not show such a

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Alzheimer Dis Assoc Disord  Volume 28, Number 3, July–September 2014 CBT Group Intervention for Alzheimer Caregivers

reduction)—rather the opportunity to participate in a 3. Jönsson L, Wimo A. The cost of dementia in Europe: a review
structured intervention based on a cognitive and behavioral of the evidence, and methodological considerations. Pharma-
approach, and share care-related problems with other coeconomics. 2009;27:391–403.
caregivers during meetings, proved to be effective. 4. Spadin P, Vaccaro CM. AIMA, Censis. La vita riposta: i costi
sociali ed economici della malattia di Alzheimer. Milano, Italy:
Franco Angeli Editore; 2007.
Depression 5. Spijker A, Vernooij-Dassen M, Vasse E, et al. Effectiveness of
None of the 3 treatment groups have proven to be non-pharmacological interventions in delaying the institution-
helpful in alleviating depression. This result is consistent alization of patients with dementia: a meta-analysis. J Am
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ment in reducing emotional symptomatology,38,39 despite 6. Mahoney R, Regan C, Katona C, et al. Anxiety and depression
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improve the knowledge of the disease and to reduce the 7. Cuijpers P. Depressive disorders in caregiver of dementia pa-
burden of care.19,40 As depression is very “rooted” in tients: a systematic review. Aging Ment Health. 2005;9:325–330.
caregivers, it is not responsive to too short intervention. 8. Gaugler JE, Newcomer R, Kane RL, et al. The longitudinal
One might hypothesize that this emotional distress is effects of early behavior problems in the dementia caregiving
related to the resistance to accept a degenerative and irre- career. Psychol Aging. 2005;20:100–116.
versible disease causing such a marked and inevitable 9. Passoni S, Mazzà M, Zanardi G, et al. Levels of burden in
change of his/her own beloved relative, whereas anxiety and Alzheimer disease caregivers. G Ital Med Lav Ergon. 2010;
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by the coping level to manage the disease itself. 10. Brodaty H, Green A, Koschera A. Meta-analysis of psycho-
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Possibly a longer intervention including individual
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Although we are aware that randomized clinical trial Alzheimer disease. JAMA. 1996;276:1725–1731.
represents the gold standard in medicine to assess the 13. Mohide EA, Pringle DM, Streiner DL, et al. A randomized
effectiveness of a treatment, and no statistical analysis trial of family caregiver support in the home management of
completely allows controlling the possible action of a dementia. J Am Geriatr Soc. 1990;38:446–454.
confounding factor, the current clinical practice situations 14. Vickrey BG, Mittman BS, Connor KI, et al. The effect of a
there have made it possible to conduct this study, as men- disease management intervention on quality and outcomes of
dementia care: a randomized, controlled trial. Ann Intern Med.
tioned above.
2006;145:713–726.
In this context, structured information about disease 15. Gallagher-Thompson D, Coon DW. Evidence-based psycho-
management, by means of a manual, seems to be effective in logical treatments for distress in family caregivers of older
reducing the overall level of perceived needs by caregivers; adults. Psychol Aging. 2007;22:37–51.
in contrast, anxiety is only reduced when structured infor- 16. Akkerman RL, Ostwald SK. Reducing anxiety in Alzheimer’s
mation is coupled with group meetings, in which pro- disease family caregivers: the effectiveness of nine-week
blems, doubts, and strategies can be shared and discussed cognitive-behavioral intervention. Am J Alzheimers Dis Other
with the professional monitoring of cognitive-behavioral Demen. 2004;19:117–123.
psychologists. 17. Rossi Ferrario S, Zotti AM, Ippoliti M, et al. Caregiving-
These results indicate the need to extend a structured related needs analysis: a proposed model reflecting current
research and socio-political developments. Health Soc Care
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Italy, possibly to be replicated in other health care contexts. 18. Vasse E, Vernooij-Dassen M, Cantegreil I, et al. Guidelines for
What the present study does not provide is a neuro- psychosocial interventions in dementia care: a European
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thus we do not know whether and to what extent 40–48.
improvement of the caregiving quality correlates with the 19. Zanetti O, Metitieri T, Bianchetti A, et al. Effectiveness of an
patients’ cognitive and functional level. Further studies are educational program for demented persons relatives. Arch
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ACKNOWLEDGMENT 21. Marsili V, Melchiorre MG, Lamura G. Role and perspectives
The authors thank the AIAMC association, the Italian of self-help groups for family caregivers of frail elderly in Italy.
Association for Analysis and Modification of Behavior and G Gerontol. 2006;54:240–248.
Cognitive and Behavioral Therapy. 22. McKhann G, Drachman D, Folstein M, et al. Clinical
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