Neurological Sciences (2022) 43:2481–2490

https://doi.org/10.1007/s10072-021-05712-2

ORIGINAL ARTICLE

The patient–caregiver dyad: the impact of cognitive and functional

impairment
Valeria Torlaschi1 · Marina Maffoni1 · Giulia Maltauro1 · Antonia Pierobon1 · Martina Vigorè1 · Roberto Maestri2 ·
Pierluigi Chimento3 · Michelangelo Buonocore3 · Gianluigi Mancardi4 · Cira Fundarò3

Received: 7 June 2021 / Accepted: 28 October 2021 / Published online: 13 November 2021
© Fondazione Società Italiana di Neurologia 2021

Abstract
This study evaluates the cognitive impairment impact on the caregiver’s burden and quality of life.
Patient–caregiver dyads admitted to dementia Diagnostic-Therapeutic Care Pathway underwent a psychological and neu-
ropsychological assessment. Overall, 30 caregivers (age 58.97 ± 14.68) of patients with dementia and 28 caregivers (age
58.57 ± 12.22) of patients with MCI were recruited. Caregiver’s burden is positively correlated to the number (r = .37,
p = .003) and severity (r = .37, p = .003) of neuropsychiatric patient’s symptoms and with the caregiver’s distress (r = .36,
p = .004). It is also negatively related to good quality of life perception (r =  − .52, p =  < .0001), to lower cognitive impair-
ment (r =  − .26, p = .05), to higher patient’s residual functional abilities in daily living (r =  − .32, p = .010) and to positive
perception of the physician’s communication (r =  − .28, p = .026). Moreover, the caregiver’s burden is significantly predicted
by the patient’s low level of instrumental activity of daily living (β =  − .74; p = .043) and by the number of neuropsychiatric
symptoms (β = .74; p = .029). Thus, this study suggests that the autonomy and neuropsychiatric symptoms may determine
the caregiver’s burden.

Keywords Caregiver · Dementia · MCI · Burden · Quality of life

Introduction Statistical Manual of Mental Disorders (DSM-5) [1, 2]. The

Cognitive decline could be a physiological process related
to ageing or a pathological one. To this regard, it is worth
to underline the fact that different levels of cognitive defi-
cit characterize specific clinical conditions. The American
Psychiatric Association (APA) updated the criteria for the
diagnosis of neurocognitive disorders in the Diagnostic and
* Valeria Torlaschi
valeria.torlaschi@icsmaugeri.it
1
Psychology Unit, Istituti Clinici Scientifici Maugeri IRCCS,
Montescano Institute, Montescano, PV, Italy
2
Department of Biomedical Engineering, Istituti Clinici
Scientifici Maugeri IRCCS, Montescano Institute,
Montescano, PV, Italy
3
Neurophysiopatology Unit, Istituti Clinici Scientifici Maugeri
IRCCS, Montescano Institute, Montescano, PV, Italy
4
Department of Neurology, Genetics, Maternal and Child
Health, University of Genoa and IRCCS Scientific Clinical
Institutes Maugeri, RehabilitationPavia, Ophthalmology,
Italy
neurocognitive disorders are distinguished in mild neuro-
cognitive disorder (better known as mild cognitive impair-
ment (MCI) [3]) and major neurocognitive disorder (or bet-
ter known as dementia) (American Psychiatric Association
[APA], 2013).
The MCI has a prevalence of 3–6% in older adults [4].
This condition indicates a state characterized by a slight
but observable decline in cognitive functions, like memory,
without, however, meeting the criteria for the diagnosis of
dementia [3]. The main neuropsychiatric comorbidities are
depression, anxiety, apathy, agitation and irritability [5].
It is noteworthy to underline that half of the subjects
with MCI develop dementia in the following 3 years [3]. In
2016, it was estimated that around 47 million people world-
wide suffered from dementia [6]. Furthermore, this value is
expected to increase until 115 million in 2050 [7]. Dementia
not only involves cognitive problems, but it also presents
difficulties with the daily activities and possible psychiatric
symptoms of different severity and impairment [7].
To distinguish MCI from dementia, mainly neuroimag-
ing techniques and neuropsychological tests are used. In

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particular, the neuropsychological evaluation allows not
only to identify the early signs of the syndrome, but also to
define other deficits in addition to the memory one, such as
deficits in executive functions, language and visuospatial
skills [3]. Another condition that seems to be involved
in the evolution of cognitive impairment is depression.
Indeed, the literature reported that 38% of patients with
MCI are depressed too [8].
Furthermore, it is essential to evaluate the Health-
Related Quality of Life (HRQol) of both patients suffering
from cognitive deterioration and their caregiver [9–11].
Evaluating HRQol in these people is not an easy task due
to the cognitive deterioration and the consequent difficul-
ties of verbal communication. As a consequences, some
researches have mainly focused on assessing the caregiv-
ers’ needs, quality of life and stress when they are assisting
their family member suffering from dementia [12]. Already
in the MCI phase, the caregiver is forced to change her/
his lifestyle to support the patient, possibly experiencing
different and conflicting feelings towards the patient [13].
Thus, the numerous challenges posed by the disease may
result in a relevant burden for the caregiver. To this regard,
previous studies have also shown that the progression of
the patient’s disease is associated with an increase in stress
and depression in the caregiver [14]. From a demographic
point of view, some caregivers belong to the so called
“sandwich generation” [15]. This means that they have to
take care of the older family member (e.g. mum, father,
uncle and aunt) and, in the meantime, of their children
too. The economic and working difficulties deriving from
this condition are considerable. On an emotional level,
the most significant stressors are fear of illness, lack of
privacy, reduction of sleep and of free time spent [16].
Another pivotal external facet is the quality of the com-
munication with the healthcare professionals. Indeed, a
good communication is important for a good adherence
to treatment for fostering the acceptance of the disease
and for reinforcing the caregiver’s ability to manage the
problems related to the patient’s condition [17, 18].
Although, separate patient’s and caregiver’s HRQoL
evaluation is informative, only the concurrent considera-
tion of the patient–caregiver relationship can provide a
broader understanding of the two halves living the “com-
mon” illness experience. Indeed, data of illness perception
may be concordant, discordant or overlap concerning how
the dyad cope with the MCI or dementia [19, 20]. Thus,
considering the detrimental impact that MCI and demen-
tia may have on both patient–caregiver dyad, the under-
standing of the psychosocial variables involved within the
patient–caregiver relationship is fundamental to provide
the patient with effective support services, as well as to
help the caregiver in managing the emotional load [21].
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Neurological Sciences (2022) 43:2481–2490
In this vein, the general aim of this research is to carry out
a prospective evaluation of the patient–caregiver dyad in the
context of cognitive impairment (MCI and dementia), consid-
ering different patient’ and caregiver’ variables. The research
protocol includes a baseline evaluation and follow-ups after
1 and 2 years. Specifically, this preliminary data posed a spe-
cial focus in MCI and dementia groups on patient’s quality of
life and caregivers’ burden at the baseline.
The current aims are the following:
1. To compare patients’ and caregivers’ anthropometrics,
clinical, HRQoL and psychological variables between
MCI and dementia groups
2. To correlate these variables each other
3. To identify which neuropsychological, clinical, func-
tional and neuropsychiatric variables may predict car-
egiver’s burden
Material and methods
Participants
All outpatients consecutively admitted to ICS Maugeri
IRCCS – Institute of Montescano (PV), who underwent a
dementia Diagnostic-Therapeutic Care Pathway (DTCP)
accompanied by a caregiver, were assessed for eligibil-
ity. The DTCP is an integrated and multidisciplinary clini-
cal pathway for taking care of people with suspicion or
diagnosis of cognitive impairment along the time, and it
is dedicated to both patient and caregiver. Specifically, the
neurologist examined the participants through their clinical
history, physical examination, laboratory data, radiological
reports and according to the guidelines for the diagnosis
of cognitive disorders ascribable to MCI [22] or to differ-
ent kinds of dementia (Alzheimer dementia, frontotempo-
ral dementia, dementia with Lewy bodies, vascular demen-
tia and Parkinson’s disease dementia) [23–27]. After this
examination, the psychologist administered the Mini-Mental
State Examination (MMSE) [28, 29] and, if necessary, the
Addenbrooke’s Cognitive Examination–Revised (ACE-R)
[30] in order to detect the presence of cognitive impair-
ment. As suggested by literature and supported by clinical
practice, MMSE < 18.3 is considered a strong cut-off for
unveil dementia [28]. Although there is not yet a consensus
on MMSE cut-offs to highlight MCI or dementia, literature
concerning older adult population with middle-low educa-
tion suggests to consider MMSE ≤ 22 as a sensible cut-off
to detect the presence of a possible cognitive decline in
our Italian population [29, 31, 32]. In order to detect pos-
sible false negative, a more sensitive screening test (ACE-
R) has been administered to patients with MMSE > 22: an
equivalent score of ACE-R ≤ 1 highlights patients with some
Neurological Sciences (2022) 43:2481–2490
cognitive difficulties ascribable to a possible mild cognitive
impairment [30, 32]. Thus, the patient–caregiver dyads were
included in the current research according to the severity of
cognitive impairment, and they were divided into the fol-
lowing groups (Fig. 1):
– Group 1, ­GR1 (group of patients with MCI): tests have
been administered to both patient (­ Pt1) and caregiver
­( CG 1) in case of 18.3 ≤ MMSE ≤ 22 or ACE-R ≤ 1
(administered only if MMSE > 22).
– Group 2, ­GR2 (group of patients with dementia): tests
have only been administered to caregiver ­(CG2) in case
of patient’s MMSE < 18.3 ­(Pt2).
Patients’ and caregivers’ exclusion criteria were the fol-
lowing: relevant visuoperceptive deficits, serious clinical
conditions (e.g. severe cardiac and respiratory problems,
neoplasia) and prior diagnosis of psychiatric disorders
Fig. 1  Flowchart of the groups’
creation
MMSE<18.3
Group 2: CG2
Only the caregiver fills the
questionnaires
2483
according to DSM-5 [1]. The ACE-R equivalent score > 1
was a further exclusion criterion of the patient–caregiver
dyad from the research protocol due to the absence of any
cognitive impairment. Individuals with no Italian education
or relapse into illiteracy were excluded too. Finally, subjects
with low motivation or refusing to undergo the evaluation
were not enrolled in the study.
Procedure
A pilot study was carried out in the months of April to Octo-
ber 2018 to test the experimental protocol. The preliminary
data collected demonstrated the feasibility of the protocol,
with a test administration time of around 40 min for provid-
ing tests to both patient and caregiver.
In the study protocol, each patient–caregiver dyad
accessed to the hospital for a first visit or for a check-up
due to suspected or established diagnosis of cognitive
Patient’s and caregiver’s access to
the Diagnostic-Therapeutic Care
Pathway (DTCP)
Patient’s cognitive
profile assessment
18.3<MMSE≤22 MMSE>22
0<ACE-R≤1
Group 1: PT1-CG1
Both patient and caregiver fill the
questionnaires
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2484
impairment. In this occasion, the neurologist orally and
written informed them about the research. If interested
in the enrolment, written informed consent was obtained
by the patient and her/his caregiver before starting the
research. In case of patient’s severe cognitive impairment
(MMSE < 18.3), the caregiver only signed the consent form
and compiled all the questionnaires.
During the clinical interview at T0 (baseline), the inclu-
sion criteria was checked through the administration of
MMSE and, if necessary, ACE-R.
At T1 (follow-up, 1 year), the same neuropsychological
and psychological assessment will be administered to the
patient and/or the caregiver in order to monitor the dyad
along the time. Inclusion and exclusion criteria, as well as
the instrument administration procedure, do not change. As
T1 is still ongoing, this paper reports only about the T0 data.
Measures
Socio‑demographic and clinical data ad hoc schedule
It is administered in two forms (for the patient and for the
caregiver), and it collects socio-anagraphic and clinical
information.
Screening tests to include the participants into ­Gr1 and ­Gr2
Mini-Mental State Examination (MMSE) [28, 29]: it is a
screening test for the assessment of impairment in differ-
ent cognitive functions (orientation, memory, attention,
linguistic function and visuospatial skills, ability to count,
remember things, repeat and execute orders).
Addenbrooke’s Cognitive Examination–Revised [30]: it
is a screening test that analyse five cognitive areas, atten-
tion orientation, memory, verbal fluency, language and
visuospatial skills. The equivalent scores were considered
(0 = below the norm, 1 = borderline and 2–4 = normal).
Tests to assess patient’s cognitive and functional
impairment and caregiver’s burden
EQ-5D and EQ VAS [33]: the first scale consists of 5
sections (ability to move; personal care; usual activities;
pain, discomfort or malaise; anxiety and depression) and
provides the possibility to select a level of severity (1 = no
problem; 2 = moderate problem; 3 = serious problem) by
life domain. The second scale is a thermometer graduated
from 0 (worst possible health condition) to 100 (best pos-
sible health condition).
Patient Health Questionnaire-9 (PHQ-9) [34]: it is a
scale currently used in general medicine to determine
the diagnosis, severity and the consequent monitoring of
depressive pathologies in the patient. It evaluates depres-
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Neurological Sciences (2022) 43:2481–2490
sive symptoms over the past 2 weeks and the functional
impairment.
Generalized Anxiety Disorder-7 (GAD) [35]: it is a ques-
tionnaire which measures the severity of anxiety symp-
toms in the previous 2 weeks.
Communication Assessment Tool (CAT) [36]: it is a
15-item questionnaire which evaluates patients’ percep-
tion of the physician’s communication effectiveness.
Family Strain Questionnaire-Short Form (FSQ-SF) [37]:
it is an instrument collecting information on the situation
experienced by a primary caregiver in the context of care,
aiming to detect her/his burden. In this research, the FSQ-
SF is considered the primary outcome measure.
Basic Activity of Daily Living (BADL) [38]: it is a rating
scale regarding some basic activities related to the daily
environment (bathing; dressing; toilet; continence; getting
around; feeding).
Instrumental Activity of Daily Living (IADL) [39] used in
its short version [40]: it is a questionnaire that investigates
the ability of older adults to perform complex and instru-
mental activities (using the telephone; making purchases;
using means of transport; cooking; doing housework;
doing laundry; handling money; taking drugs).
Neuropsychiatric Inventory Questionnaire (NPI-Q) [41]:
it is a self-administered questionnaire requesting the car-
egiver to assess the presence and intensity of a series
of patient’s neuropsychiatric symptoms during the last
weeks (e.g. depression, apathy, agitation, psychosis and
aggression).
Table 1 summarizes the constructs and instruments
administered to patient, caregiver or both.
Ethical considerations
This study represents the first phase of a more extended
research that was approved by the Institutional Review
Board and Central Ethics Committee of the ICS Maugeri
SpA SB (approval number: CEC N.2315, 11/06/2019). A
multidisciplinary team composed by neurologist, psycholo-
gists and trainee psychologists carried on patients’ recruit-
ment, assessment and data collection. The participation
to the research was on a voluntary basis, and participants
did not receive any form of reimbursement. However, both
the patient and the caregiver were offered with a prelimi-
nary neuropsychological and psychological screening and
informed about the results.
Statistical analysis
Descriptive statistics are reported as mean ± SD for continu-
ous variables and as n (frequency percentage) for discrete
variables.
Neurological Sciences (2022) 43:2481–2490 2485

Table 1  Instruments, constructs, Test Construct Scores interpretation PT CG

interpretation of scores and
respondent MMSE Cognitive impairment MMSE < 18.3 = cognitive impairment* ✓ ✓
ACE-R Cognitive impairment ACE-R ≤ 1 = cognitive impairment** ✓
EQ-5D Quality of life questionnaire High score = low quality of life ✓ ✓
EQ VAS Quality of life (VAS) High score = high quality of life ✓ ✓
PHQ-9 Depression PHQ-9 ≥ 10 = depressive symptoms ✓ ✓
GAD-7 Anxiety GAD-7 ≥ 10 = anxious symptoms ✓ ✓
CAT​ Communication effectiveness High score = good communication ✓ ✓
FSQ-SF Caregiver’s burden High score = high caregivers’ burden ✓
BADL Basic functional autonomy High score = adequate autonomy ✓
IADL Instrumental functional ability High score = adequate independence ✓
NPI-Q Neuropsychiatric symptoms High score = more severe symptoms ✓

PT, test administrable to patient; CG, test administrable to caregiver

*
The patient’s MMSE score < 18.3 was considered the cut-off to include the participant in group 2 — G
­ R2
(patient suffering from a severe form of cognitive decline ascribable to dementia)
**
The patient’s ACE-R ≤ 1 and MMSE > 22 scores were considered the cut-offs to include the participant in
group 1 — ­GR1 (patient suffering from a mild form of cognitive decline ascribable to MCI)

Between-group comparisons (­ GR1 vs G ­ R2) for continu- Being connected with the severity of disease, this certificate
ous variables were carried out by the Mann–Whitney U has been intended as an index of disability in this research.
test. Comparisons of categorical variables were carried out In Table 2 are reported anthropometrics, clinical, HRQol
by chi-square test. The association between variables was and psychological variables regarding patients and the
assessed by Spearman correlation coefficient r. related comparisons when appropriate. BMI and MMSE
To identify which factors were independent predictors
of caregiver burden, multiple regression analysis (backward
selection procedure) was carried out. Specifically, the car-
egiver’s burden (primary outcome measure) was considered Table 2  Patients’ anthropometrics, clinical, HRQol and psychological
variables and related comparisons
the dependent variable, and CDR, CIRS, IADL, NPI-Q,
MMSE and disability index (i.e. disability exemption cer- Variables Pt1 (patient °Pt2 (patient
tificate) were candidate predictors. affected by MCI) affected by
dementia)
Statistical significance was set on p value < 0.05. All sta-
tistical analyses were carried out by the internal department n Mean ± SD n Mean ± SD p (MW U test)
of biomedical engineering using the SAS/STAT statistical
Age 28 80.17 ± 5.31 30 82.53 ± 5.88 0.17
package, release 9.4 (SAS Institute Inc., Cary, NC, USA).
Education 28 8.12 ± 4.00 30 6.74 ± 2.90 0.16
(yrs)
BMI 26 25.95 ± 3.91 24 23.03 ± 4.37 0.013
CIRS 28 7.32 ± 4.47 26 7.23 ± 4.06 0.82
Results MMSE 28 21.87 ± 2.54 30 12.15 ± 4.76 < 0.0001
EQ-5D 28 7.21 ± 1.99 -
Overall, 28 caregivers and patients with MCI ­(GR 1; EQ VAS 28 67.07 ± 27.54 -
mean caregiver’s age, 58.57 ± 12.22) and 30 caregivers PHQ-9 27 4.81 ± 4.80 -
and patients with dementia ­(GR2; mean caregiver’s age, GAD-7 27 3.89 ± 3.21 -
58.97 ± 14.68) were enrolled. CAT​ 26 58.92 ± 14.45 -
The following distribution of the types of dementia is not
statistically significant between groups: vascular (­ GR1 50% Pt1 Patient affected by mild cognitive impairment, Pt2 patients
affected by dementia, BMI body mass index, CIRS critical illness rat-
vs ­GR2 43.33%), Alzheimer ­(GR1 28.57% vs ­GR2 53.33%), ing scale, MMSE Mini-Mental State Examination adjusted scores,
frontotemporal ­(GR1 3.57% vs ­GR2 3.33%) and mixed ­(GR1 EQ-5D Quality of life (questionnaire form), EQ VAS Quality of life
17.86% vs ­GR2 0%) dementia. Moreover, 8.93% patients (visual-analogue form), PHQ-9 Patient Health Questionnaire-9,
affected by MCI ­(GR1) and 28.57% patients affected by GAD Generalized Anxiety Disorder, CAT​ Communication Assess-
ment Tool. ° According to the severity of the cognitive impairment
dementia ­(GR2) (χ2 8.02, p = 0.005) had a disability exemp- (MMSE < 18.3), the patients did not compile the self-reported ques-
tion certificate provided by the Italian Healthcare System. tionnaires

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were found significantly different as expected according to positively associated with the distress perceived by caregiv-
literature. ers themselves (NPI-Q D, r = 0.36, p = 0.004). Furthermore,
The majority of caregivers were females (77.59%) and caregiver’s burden is negatively associated with a positive
lived with someone else (­GR1 89.29% vs G ­ R2 96.67%); and higher perception of caregiver’s quality of life (EQ VAS,
moreover, almost half of them are still working (­ GR1 46.43% r =  − 0.52, p < 0.0001). Caregiver’s burden is also negatively
vs ­GR2 53.83%). In Table 3 are reported anthropometrics, correlated to a lower patient’s cognitive impairment (MMSE,
HRQoL, psychological and functional variables of car- r =  − 0.26, p = 0.05) and to higher patient’s residual func-
egivers and related comparisons. Quality of life (EQ-5D) tional daily living abilities (IADL, r =  − 0.32, p = 0.010).
is worse in dementia patient’s caregivers compared to one Lower caregiver’s burden is also associated with a positive
of MCI patient’s caregivers (6.71 ± 1.51 vs 5.96 ± 1.26, perception of the physician’s communication effectiveness
p = 0.05). However, no significant differences between (CAT, r =  − 0.28, p = 0.026). Finally, caregiver’s quality
group were found considering EQ VAS (78.93 ± 22.87 vs of life is negatively related to a higher caregiver’s distress
75.35 ± 16.3, p = 0.11) and the other variables assessed. referred to psychiatric and behavioural symptoms suffered
Considering the significant correlations, caregiver’s by the patient (EQ-5D r =  − 0.26, p = 0.049).
burden is correlated to both patients’ and caregiver’ vari- Multiple regression analysis (backward selection proce-
ables, as shown in Fig. 2. In particular, caregivers’ burden is dure) was carried out considering caregiver’s burden as the
positively related to neuropsychiatric symptoms of patients, dependent variable and CDR, CIRS, IADL, NPI-Q, MMSE
specifically to their number (NPI-Q S, r = 0.37, p = 0.003) and disability index (i.e. disability exemption certificate) as
and severity (NPI-Q SE, r = 0.37, p = 0.003), as well as it is candidate predictors. This analysis revealed that the patient’s
low level of autonomy (IADL, β =  − 0.74; p = 0.043) and the
number of patient’s neuropsychiatric symptoms (NPI-TOT,
Table 3  Caregivers’ anthropometrics, HRQoL, psychological vari-
ables and patients’ functional/neuropsychiatric variables referred by β = 0.74; p = 0.029) were independent and significant predic-
caregivers and related comparisons tors of caregiver’s burden (FSQ-SF) (F = 6.17, p = 0.004).
Variables CG1 (patients CG2 (patients
affected by MCI) affected by demen-
tia) Discussion
n Mean ± SD n Mean ± SD p (MW U
test) This preliminary study aims to deepen the knowledge
regarding the impact of cognitive impairment (MCI and
Age 28 58.57 ± 12.22 30 58.97 ± 14.68 0.86
dementia) on the patient–caregiver dyad, posing a special
Education 28 10.5 ± 4.43 30 12.07 ± 3.91 0.30
(yrs)
focus on caregivers’ quality of life and burden.
BMI 25 24.76 ± 4.13 27 24.77 ± 4.83 0.97
Overall, the patients involved in this study display the
MMSE 29 28.51 ± 1.89 30 28.68 ± 1.61 0.82
characteristics already described in literature: as attended,
EQ-5D 28 5.96 ± 1.26 28 6.71 ± 1.51 0.050
the level of deterioration is worse in the dementia group
EQ VAS 28 78.93 ± 22.87 26 75.35 ± 16.37 0.11
­(Pt2). Moreover, with respect to the MCI group ­(Pt1), ­Pt2 also
PHQ-9 28 5.21 ± 5.12 29 6.59 ± 5.47 0.25
unveiled a significant weight lose which has to be consid-
GAD-7 28 5.11 ± 5.43 29 6.41 ± 5.22 0.23
ered a further sign of pauperization of patients’ functionality
CAT​ 28 62.86 ± 13.41 30 61.87 ± 12.73 0.64
as underlined in the IADL too (3.14 ± 2.56 vs 1.59 ± 2.24,
FSQ-SF 27 11.48 ± 7.78 29 14.07 ± 4.39 0.09
p = 0.008). Indeed, Gómez-Gómez and Zapico (2019) have
BADL* 28 4.21 ± 2.01 29 3.31 ± 2.04 0.08
already shown that low BMI predicts cognitive decline [42].
IADL* 28 3.14 ± 2.56 29 1.59 ± 2.24 0.008
From a demographic point of view, it is possible to
NPI-Q S* 28 3.29 ± 2.71 30 4.43 ± 2.49 0.068
assume that our caregivers, still involved in some working
NPI-Q SE* 28 6.14 ± 5.70 30 9.23 ± 6.37 0.030
activity, can be part of the “sandwich generation” [15] or,
NPI-Q D* 28 6.93 ± 7.52 30 8.13 ± 8.16 0.46
more specifically, to the “senior sandwich generation” since
the mean age is under 60 [43]. This term is used to describe
CG Caregiver, BMI body mass index, MMSE Mini-Mental State middle aged or older adults who are asked to care for both
Examination; EQ-5D = Quality of life (questionnaire form); EQ VAS their ageing parents and their own children in the meantime.
Quality of life (visual-analogue form), PHQ-9 Patient Health Ques-
tionnaire-9, GAD Generalized Anxiety Disorder, CAT​ Communica- This finding may be read as the result of the ongoing socio-
tion Assessment Tool, FSQ-SF Family Strain Questionnaire-Short demographic transformations as people are living longer and
Form, BADL Basic Activities of Daily Living, IADL Instrumental childbearing is often postponed and needs continued care
Activity of Daily Living, NPI-Q S Neuropsychiatric Inventory Ques- [44, 45]. Further data (e.g. the number of children or other
tionnaire symptoms, NPI-Q SE Neuropsychiatric Inventory Question-
naire Severity, NPI-Q D Neuropsychiatric Inventory Questionnaire family members to take care) should be useful to validate
Distress. *Patients’ functional/neuropsychiatric variables this hypothesis.

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Neurological Sciences (2022) 43:2481–2490
Fig. 2  Positive or negative
significant relations between
patient’s psychological/
neuropsychological factors,
caregiver’s communication and
psychological factors
Moreover, the caregivers’ sample is mainly represented
by the female gender as already reported in literature [46].
This gender unbalance may be explained by the fact that, in
the Mediterranean cultures, females are more involved in the
managing of children and family [47]. Further investigations
to depict the main facets of this caregivers’ generation are
needed in order to detect aspects needing attention and tai-
lored supportive interventions. In this vein, the enlargement
of the sample could allow the analysis of how these facets
may be related to psycho-emotional variables.
Literature described the caring role as a factor posing
manifold challenges at a physical, financial and psychologi-
cal levels [44, 45] such as threatening the caregiver’s health
[16]. In this regard, it is noteworthy to underline that in our
study, the level of burden (FSQ-SF) referred by the caregiv-
ers is so high that it is “seriously recommended” a psycho-
logical support [16]. Specifically, correlations revealed that
a higher level of burden and a worse quality of life of the
caregiver are associated with a general worsening of the
patient’s cognitive condition (dementia vs MCI), with a
greater severity of neuropsychiatric symptoms, as well as
with less autonomy in the patient’s residual functional abili-
ties. These results corroborate previous literature underlying
2487
the detrimental effect that the patient’s cognitive impairment
may have on caregiver’s burden and quality of life [48, 49].
Furthermore, in our sample, the effectiveness of the
healthcare professional’s communication is also associated
with the burden perceived by the caregiver. Specifically, the
lower quality of physician’s communication, the higher the
burden perceived by the caregivers. Thus, this finding con-
tributes to enrich the literature suggesting that the quality
of healthcare professionals’ communication not only may
impact on patient’s medication adherence and the caregiver’s
ability to manage the patient’s condition [17, 18, 50, 51],
but it may also impact on the burden experienced by the
caregiver.
According to the regression model conducted, the main
determinants of the caregiver’s burden are the neuropsychi-
atric symptoms, while the patient’s good level of instrumen-
tal activity of daily living significantly decreased it. This
finding strengthens the literature on this theme, identifying
the neuropsychiatric symptoms as the principal causes of
the caregivers’ distress and burden [46, 52]. It is assum-
able that these kinds of symptoms are particularly demand-
ing to contain and accept so paving the way to malaise and
loss of resources, resulting in a relevant amount of distress.
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2488
However, the heterogeneity of results and studies that are
present in the literature prevent from further interpretations
[46].
Finally, the patient’s good level of autonomy significantly
contributed to the caregiver’s quality of life. This finding
contributes to corroborate the concept that the more pre-
served are the patient’s condition, the more positive is the
caregiver’s quality of life. Indeed, literature already showed
that the patient’s cognitive impairment, already at the onset,
may negatively impact on the caregiver’s life and health [13,
14]. Coherently, this finding demonstrates that the patient’s
level of autonomy may improve the caregiver’s quality of
life.
To conclude, it is needed to underline that this study is
not without limits. On one hand, the sample size of the two
groups (MCI vs dementia) is small so preventing from con-
ducting more advanced statistical analyses. To this regard,
the prosecution of the patient–caregiver dyad enrolment
will overcome this issue. Moreover, the ongoing follow-up
will enable to collect further data and, in turn, to conduct
intra- and inter-subjects analyses. Thus, the present findings
have to be considered preliminary and not exhaustive. On
the other hand, the patient–caregiver dyads are enrolled in
one single place in the north of Italy. For this reason, the
generalization of results requests attention as socio-cultural
biases may exist. Further researches are recommended to
adopt a multi-centre approach to collect data.
Conclusions
The current preliminary findings contribute to deepen the
knowledge regarding the patient–caregiver dyad, posing
attention on the quality of life and on the burden of caregiv-
ers taking care of people suffering from MCI or dementia.
In this regard, it is recommended to further investigate this
challenging relationship, as the cognitive impairment has to
be considered a family condition with relevant detrimental
effects on the main carers. This issue is even more pivotal
if considering that the majority of caregivers is relatively
young. So it is presumably that they are requested to take
care of children and kids too. Moreover, this study dem-
onstrates that the patient’s health condition may determine
the caregiver’s quality of life and burden. Specifically, neu-
ropsychiatric symptoms may negatively impact, whereas a
satisfactory patient’s autonomy and functioning may signifi-
cantly reduce the burden and improve the caregiver’s quality
of life. These statements have relevant practical implications
for those who need to support the patient–caregiver dyad.
Indeed, literature showed that proper multidisciplinary inter-
ventions for family member may be effective for helping in
the challenging care pathway [52, 53]. Specifically, nowa-
days, it is even more crucial to develop tailored preventive
13
Neurological Sciences (2022) 43:2481–2490
and supporting programs which may address specific needs
and, in the meantime, optimize human and economic
resources. In this vein, promoting the patient functioning
and containing the neuropsychiatric symptoms may gain a
double value, positively influencing the patient but also her/
his caregiver.
Funding This work was partially supported by the “Ricerca Corrente”
funding scheme of the Ministry of Health, Italy.
Declarations
Ethical approval This study was approved by the institutional review
board and the central ethics committee of the ICS Maugeri SpA SB
(approval number: CEC N.2315, 11/06/2019).
Conflict of interest The authors declare no competing interests.
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