The Impact of Covid-19 on Dementia - Original Research

American Journal of Alzheimer’s

Disease & Other Dementias®
The Effects of COVID-19 Home Confinement Volume 35: 1-9
ª The Author(s) 2020
Article reuse guidelines:
in Dementia Care: Physical and Cognitive sagepub.com/journals-permissions
DOI: 10.1177/1533317520976720
Decline, Severe Neuropsychiatric Symptoms journals.sagepub.com/home/aja

and Increased Caregiving Burden

Flávia Borges-Machado, MSc1 , Duarte Barros, MSc1 ,

Óscar Ribeiro, PhD2, and Joana Carvalho, PhD1,3

Abstract
Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through
informal caregiver’s perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 +
13.54 years, 41.7% female) of individuals with NCD (74.28 + 6.76 years, 66.7% female) selected from the Body & Brain exercise
program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients’
ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neu-
ropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results:
Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p ¼ 0.003)
and increased NPI total score (MD ¼ 5.72; 95% CI: 1.19 to 10.25, p ¼ 0.015). As for caregivers, results also showed an increased
caregiving burden (MD ¼ 0.17; 95% CI: 0.27 to 0.08; p ¼ 0.001) and a decline in their well-being (p ¼ 0.015). Discussion:
COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to
ensure properly sustained support to dementia caregiving dyads and mitigate caregivers’ burden.

Keywords
dementia, burden, caregiver stress, informal caregiver, SARS-CoV-2

Introduction distance precaution measures, caregivers, namely children,

The World Health Organization declared COVID-19 a pan-
demic. Despite the massive investigation, no effective pharma-
cological drug or vaccine has been approved to treat or prevent
this highly infectious disease.1,2 In Portugal, the first cases
were confirmed in March 2020 and rapidly the government
declared the state of emergency to slow the spread of the virus.3
Several draconian measures of physical-social distancing were
set to restrict movement and gatherings.4 Notwithstanding the
effectiveness of these measures, several consequences in the
general population have been reported such as increased risk of
functional decline, disability and negative psychological
effects (e.g. anxiety and depression).5-7
Particularly vulnerable groups like older adults with chronic
health conditions were asked to remain at home, sometimes
imposing their family members with a full time task of provid-
ing care without the necessary abilities.8 Either by sharing the
same household, or by providing support within the necessary
faced the challenges of working from home, home-schooling
children in quarantine, and guaranteeing the instrumental and
emotional need of their parents.9,10
Individuals diagnosed with a neurocognitive disorder
(NCD) might not understand what is happening or be able to
follow the necessary safeguard procedures and care for them-
selves.11,12 Indeed, COVID-19 home confinement may have a
1
CIAFEL, Centro de Investigação em Atividade Fı́sica, Saúde e Lazer,
Universidade do Porto, Porto, Portugal
2
Departamento de Educação e Psicologia, CINTESIS, Centro de Investigação
em Tecnologias e Serviços de Saúde, Universidade de Aveiro, Aveiro, Portugal
3
Faculdade de Desporto da Universidade do Porto, Porto, Portugal
Corresponding Author:
Joana Carvalho, PhD, Research Centre in Physical Activity Health and Leisure,
Faculty of Sport, University of Porto, Rua Dr. Plácido Costa 91, 4200-450
Porto, Portugal.
Email: jcarvalho@fade.up.pt

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2 American Journal of Alzheimer’s Disease & Other Dementias®
great impact through the interruption of sustained routines,
increasing anxiety and boringness due to lack of activities,
conflicts with caregivers, disorganized daily life, cognitive
decline, sleep disturbances, and excessive stress and ten-
sion.13,14 This snowball effect may lead to negative impacts
on behavioral and psychological symptoms (BPSD) related to
NCD (e.g., delusions, agitation, aberrant motor behavior, intru-
siveness or wandering), contributing to even higher levels of
stress within the family.8,15 While staying at home, older adults
are also prone to increase the time spent in sedentary activities
and reduce daily physical activity; altogether, these home con-
finement effects might impact physical function and indepen-
dence in ADL.16,17
Caregiving per se is associated with negative mental health
consequences such as distress, depression and anxiety.18 As a
result of this pandemic, some caregivers might get infected or
become ill, which leads to isolation and unavailability to pro-
vide care, development of mental health issues, or financial
constraints.8 Along with the irregularity or lack of outside care
assistance, which adds more strain to already-highly levels of
burden,19 the ceasing of face-to-face activities, such as support
groups, may further affect the caregivers’ ability to cope with
increased levels of stress or anxiety.20
In short, it is imperative to understand and determine the
negative effects of this pandemic on caregivers and to coordi-
nate research efforts to improve their quality of life during
these particularly challenging times.9,21,22 To our knowledge,
little is yet known about the effect of home confinement on
people with NCD23-25 or its impact on caregivers’ burden mea-
sured through standardized tests. This study aims to investigate
how home confinement impacted care provision of individuals
diagnosed with NCD through informal caregivers’ perspective,
namely how it has affected the care recipient’s status and car-
egiving burden.
Design and Methods
This study is a part of the ongoing project entitled Body &
Brain (ClinicalTrials.gov—identifier number NCT04095962).
All participants had already signed an informed consent form
and all procedures were conducted in full accordance with
Helsinki Declaration. The study protocol was approved by the
Ethical Commission of the Faculty of Sports of the University
of Porto (CEFADE22.2018). This quasi-experimental con-
trolled trial aims to investigate the effect of a 6-month Multi-
component Training (MT) exercise intervention on the
physical and cognitive function of people with neurocognitive
disorder. Additionally, the study explores the effect of the MT
program on underlying mechanisms associated with NCD
(i.e., functional independence in ADL, body composition, qual-
ity of life, neuropsychiatric symptoms, caregiver’s burden,
blood-based biomarkers and hemodynamics, dietary intake and
hydration status). It included individuals aged  60, capable of
walking autonomously without an assistive device or human
assistance, and diagnosed with dementia/neurocognitive disor-
der using accepted diagnostic criteria such as established by the
Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV-TR or DSM-5), 26 ICD-10 27 , or the NINCD-
S-ADRDA.28 This multicenter intervention was being con-
ducted in a wide-ranging number of public and private
settings (e.g., daycare centers, nursing homes, hospital centers)
in the metropolitan area of Porto, Portugal.
This year’s study intervention cycle started in November
2019 but due to COVID-19 pandemic unexpectedly finished
on March 6th; afterward, the country declared a state of emer-
gency and all activities ceased. A contingency plan for the
project was developed, assuring regular telephone contacts
with participants to find out about their overall status and
needs.
Participants
This specific study sample comprises caregivers of participants
from the Body & Brain project, with a baseline assessment
prior to the lockdown period. Only caregivers whose care reci-
pients lived in a nursing home were excluded. Additionally, if
the care recipient became severely ill or suffered an acute
health event during home confinement period, his/her caregiver
was also excluded.
Data Collection
All evaluations were performed with care recipients’ main
informal caregivers who were contacted twice by telephone.
First, to collect information about their current status and deter-
mine their availability to participate in this specific study, and
if they were willing to provide complimentary information on
their caregiving situation since COVID-19 home confinement
(i.e., routines, number of daily caregiving hours); second, to
collect information about the care recipients’ status (indepen-
dence in ADL, neuropsychiatric symptoms and physical/cog-
nitive status). Finally, participants were asked to provide
information about their care management regarding
COVID-19 and burden levels. After 5 missed calls, or unavail-
ability to schedule a telephone interview, individuals were
excluded.
Baseline data was collected 4 months before the first
infected case in Portugal, specifically during November 2019
within the scope of the Body & Brain project; and 3 months
after home confinement, during June 2020. Results from
post-confinement assessments were compared with those of the
first evaluations, and specific questions regarding caregivers’
perceptions about care recipients’ behavior were asked to con-
firm if potential alterations could be attributed to home
confinement.
Care Recipient Evaluation
Physical health. Caregivers’ perceptions about changes in phys-
ical activity and physical function during home confinement
were analyzed through short-answer questions (i.e., compari-
sons between confinement period with pre-confinement period
Machado et al
on the volume of physical activity and sitting time). Caregivers
were invited to discuss possible declines and indicate their
perception on the physical fitness of the care recipient
(e.g., have you noticed differences on the physical fitness of
your care recipient, as increased difficulty standing up from a
chair or climbing stairs, or gait changes due to home confine-
ment?), and report any fall during this period. Answers were
dichotomous: “yes” or “no.”
Independence in ADL. Care recipients’ ability to function inde-
pendently in ADL was assessed with the Barthel Index (BI).29
This instrument addresses 10 basic daily activities, such as
bathing, dressing or using toilet—with total score ranging from
zero to 100. Lower scores indicate higher dependency levels.
Neuropsychiatric symptoms. The Neuropsychiatric Inventory
(NPI)30 was used to analyze the BPSD. The NPI total score
is calculated by multiplying the frequency and severity rates
per domain (e.g., delusions, agitation, or motor disturbances)
and adding them up—ranging from zero to 144 points. Addi-
tionally, caregivers were asked to give their perception about
care recipients’ alterations over neuropsychiatric symptoms
during home confinement.
Drug treatment and cognitive function. A short-answer dichoto-
mous question regarding care recipients’ cognitive function
alterations during the home confinement was asked to care-
givers (e.g., since the beginning of the home confinement, have
you noticed a decline in your care recipient’s cognitive func-
tion, such as increased difficulties on spatiotemporal orienta-
tion or memory problems?). Caregivers were also asked about
care recipients’ medication and possible adjustments during
home confinement (i.e., dosage changes of ongoing therapies,
addition or withdrawal of pharmacological treatment).
Caregiver Evaluations
Caregivers burden. The Care-related Quality of Life instrument
(CarerQol) was used to address subjective burden (Carer-
Qol-7D), and caregivers’ well-being (CarerQol-VAS).31,32
Subjective burden was measured in 7 dimensions: fulfillment,
relational problems, mental health, daily activities problems,
physical health and support; caregivers’ well-being was mea-
sured in terms of happiness using a visual analogue scale
between 0 (completely unhappy) and 10 (completely happy).
CarerQol-7D total score ranges from zero to 14, but studies
frequently consider mean and standard deviation (SD) values,
with higher scores indicating a better caregiving situation.
Caregivers’ Perspective on Physical Activity and ADL
Care management. Caregivers were asked 10 dichotomic ques-
Independence of Their Care Recipients
tions about the care situation during COVID-19 pandemic and
subsequent home confinement. These questions were planned
considering other similar studies for older adults,33 particularly
those diagnosed with NCD.9,25 Caregivers were asked about
their ability to cope with challenging BPSD, or difficulty to
obtain essentials (i.e., food, medication) and opportunity to
3
care for themselves. Each statement required a “yes” or “no”
answer, according to the caregiver status—e.g. I felt that prov-
ing care during home confinement was physically, emotionally
or financially harder than previously to COVID-19 outbreak;
I believe that during home confinement I had more conflicts
with my care recipient; I felt that during this confinement
period I had increased care-related responsibilities; and I per-
ceived that during home confinement I did not have the oppor-
tunity to dedicate time for self-care or to rest.
Statistical Analysis
Descriptive statistics were expressed as mean (SD) for contin-
uous variables and as frequency and percentages for categorical
variables. Normal distribution was analyzed by Shapiro-Wilk
test. Statistical comparisons between pre and post confinement
means were made using paired-samples Student’s t-tests or
paired-samples signed test. The comparison between categori-
cal variables was performed using the chi-squared test. Statis-
tical analyses were conducted with SPSS IBM Statistical
Software version 25.0 (SPSS, Inc., Chicago, IL) for Windows
with a significance level of p < 0.05.
Results
Caregivers’ and Care Recipients’ Characteristics
From 79 eligible participants from the ongoing project, 43 were
excluded (see study Flowchart). Of those, 2 individuals
suffered acute health events during home confinement, and
7 caregivers were not available to participate in these
follow-up evaluations (Figure 1). The final sample comprised
36 caregivers [64.94 + 13.54 years, 15 (41.7%) female] and
their care recipients [74.28 + 6.76 years, 24 (66.7%) female].
Care recipients baseline characteristics are depicted in Table 1.
Most of them were married 26 (72.2%) and had low to medium
education (63.9%). Half of them (n ¼ 18) used to attend a
daycare center.
Table 2 presents caregivers pre-confinement characteristics.
Caregivers were highly educated (72.2%), most were profes-
sionally retired (58.2%) with a large heterogenous health sta-
tus. Nearly half of them rated their general health as “poor or
fair” (45.7%) and 58.3% were included in the group of people
at increased risk for severe illness from COVID-19.
Overall, 11 (30.6%) caregivers shared the task of providing
care with another relative (secondary caregiver) and 5 (13.9%)
had professional domiciliary care.
Most caregivers (80.6%) expressed that care recipients
decreased their volume of physical activity, and conversely
increased their sitting time (Table 3). Additionally, 66.7%
mentioned that their care recipients presented physical decline
attributed due to home confinement; 8 care recipients (22.2%)
felt at least once. Compared to the pre-confinement period, care
4 American Journal of Alzheimer’s Disease & Other Dementias®

Assessed for eligibility (n= 79)

Excluded (n= 34)

Caregivers’ unavailability at baseline (n= 10)

Nursing home (n= 24)

Excluded (n= 9)
Contacted by telephone and invited to
participate on this study (n= 45) Caregivers’ unavailability (n= 7)
Care recipients’ acute event (n= 2)

Evaluated after COVID-19

outbreak (n= 36)

Figure 1. Sample recruitment for this study.

recipients significantly declined their independence in ADL,
presenting a lower BI score (p ¼ 0.003).
Caregivers’ Perspective About Care Recipients’
Neuropsychiatric Symptoms and Cognitive Function
Most caregivers (80%) mentioned that care recipients pre-
sented cognitive decline and 44.4% worsened in their BPSD
attributed to home confinement (Table 3). Mean difference
between pre and post confinement for NPI total score increased
(5.72 + 13.38, p ¼ 0.015) and reached statistical significance
(Table 4).
Caregivers Burden and Care Management
Caregivers burden (Table 4) increased significantly during
home confinement. This can be observed in CarerQoL-7D
overall score (0.17 + 0.28, p ¼ 0.001). Conversely, care-
givers’ self-rated well-being decreased (p ¼ 0.015). This coin-
cided with an increment on time spent in providing care. Before
home confinement, 11 (30.6%) caregivers spent more than 10h/
day in care provision tasks; presently, 24 (66.7%) reported
spending more than 10h/day (w2 ¼ 31.46, p < 0.001). Addition-
ally, 6 (16.7%) got unemployed and the same number remained
in-person work, while 8.3% started working from home.
Within these 2 last scenarios, 5 caregivers reported that care
provision was particularly difficult due to fear of infecting the
care recipients and/or coordinating working at home with chil-
dren home-schooling.
Care recipients’ worsening status had a negative impact on
their caregivers’ life. Overall, 50% felt it was physically, emo-
tionally or financially harder to take care of their relatives, and
69.4% expressed feelings of an increased sense of responsibil-
ity during home confinement. Nearly 40% reported less toler-
ance to conflicts and 33.3% felt difficulties dealing with BPSD.
These perceptions are in line with results obtained from
CarerQoL-7D individual dimensions. Compared to the
pre-confinement period, there was a significant decline on the
perceived fulfillment (w2 ¼ 12.94, p ¼ 0.012) and support
received in caregiving responsibilities (w2 ¼ 9.86, p ¼ 0.043).
Discussion
The results of this study suggest that COVID-19 outbreak
seemed to have significantly augmented caregiving subjective
burden and decreased well-being, potentially due to worsening
of physical and cognitive functions of people living with NCD.
Half of the caregivers reported that it was harder to take care of
their relatives. Care recipients significantly increased the sever-
ity of neuropsychiatric symptoms and declined their ability to
function independently in ADL.
Machado et al 5

Table 1. Care Recipients’ Sociodemographic Characteristics and Table 2. Caregivers Sociodemographic Characteristics, Clinical
Clinical Information. Information and Caregiving Situation.

Care recipients Characteristics Caregivers (N ¼ 36)

Characteristics (N ¼ 36)
Age (years), mean (SD) 64.94 + 13.54
Age (years), mean (SD) 74.28 + 6.76 Age, range 36-86
Age, range 62-86 Gender (female), N (%) 15 (41.7%)
Gender (female), N (%) 24 (66.7%) Education, N (%)
Weight (kg), mean (SD) 68.35 + 9.88 Medium (4-7 years) 10 (27.8%)
BMI (kg/m2), mean (SD) 27.57 + 4.21 High (8-15 years) 26 (72.2%)
Education, n (%) Professional situation
Low (1-3 years) 6 (16.7%) Non-Employee 1 (2.8%)
Medium (4-7 years) 17 (47.2) Working 14 (38.9%)
High (8-15 years) 13 (36.1) Retired 21 (58.3%)
Day care center 18 (50%) Caregiver relationship
Living alone, N (%) 3 (8.3%) Partner 22 (61.1%)
Number of medications and supplements, 6.97 + 3.53 Adult Child 10 (27.8%)
mean (SD) Other relative 4 (11.1%)
Chronic Health Conditions, n (%) Sharing the task of providing care 11 (30.6%)
Diabetes mellitus 6 (16.7%) Number of years as a caregiver, mean (SD) 4 + 2.16
Hypertension 23 (63.9%) Providing care (hours/day)
Dyslipidemia 24 (66.7%) 0-3 h 7 (19.4%)
Number of falls in past 12 months, n (%) 4-7 h 13 (36.1%)
None 27 (75%) 8-10 h 5 (13.9%)
>1 9 (25%) >10 h 11 (30.6%)
MMSE, mean (SD) 17.33 + 6.10 General health
Diagnosis, n (%) Poor (N, %) 4 (11.4%)
Dementia or Major NCD 31 (86.1%) Fair (N, %) 12 (34.3%)
Alzheimer’s Disease 17 (54.8%) Good (N, %) 11 (31.4%)
Multiple Etiologies 6 (19.4%) Very Good (N, %) 3 (8.6%)
Unspecified 4 (12.9%) Excellent (N, %) 5 (14.3%)
Vascular Disease 2 (6.5%) Number of medications and supplements, range 0-16
Frontotemporal Disease 1 (3.2%) Risk person for COVID
Korsakoff Syndrome 1 (3.2%) No 15 (41.7%)
Mild cognitive impairment or Minor NCD 5 (13.9%) Yes 21 (58.3%)

Burton et al. (2015)34 highlighted the vicious cycle between
lower levels of physical activity and the occurrence of falls,
fear of falling, or loss of confidence, which may result in
decreased functional ability and loss of daily independence.
As expected, due to mandatory home confinement, caregivers
perceived that the majority of care recipients increased sitting
time and reduced habitual physical activity, which may explain
the perceived changes over physical function.16,17,35 Further-
more, falls may trigger hospital admission and/or institutiona-
lization. 36 Despite the multifactorial etiology of NCD,
sedentary lifestyle, inactivity and low fitness have been
described as determinant risk factors for NCD onset and its
progression.37,38 Regarding ADL, individuals significantly
declined their independence levels. According to Forbes
et al. (2015), the mitigation of dependence in ADL as a result
of NCD progressing is critical for enhancing the quality of life
of both older adults with NCD and their caregivers, and may
prevent or delay institutionalization.39
Nearly 80% of the caregivers perceived declines in the cog-
nitive function of their relatives due to home confinement.
These results are in accordance with Canevelli et al. (2020)25
study, which evaluated 139 individuals diagnosed with NCD or
other milder cognitive disturbances through a telephone survey
to assess care recipients’ changes over cognitive function, neu-
ropsychiatric symptoms and functional independence during
home confinement. Overall, caregivers reported worsening of
cognitive symptoms—particularly in memory and orientation
abilities—on one-third of the sample.25 Cognitive decline
might be explained by social isolation and/or loneliness, drastic
changes on activities and routines, lack of stimulating activi-
ties, and absence of appropriate clinical follow-up.12,25,40-42
Canevelli and colleagues (2020)25 also reported worsening or
onset of BPSD on more than half of the care recipients—nearly
55%. This outcome is in accordance with our study findings,
since 44.4% of the caregivers perceived that their care recipients
presented a worsening of BPSD due to home confinement. Pre
and post confinement comparisons showed a statistically signif-
icant increasement on severity of neuropsychiatric symptoms,
which was superior to the minimal clinically meaningful differ-
ence of 4 points criteria, suggested by Mega et al.43,44 It is
important to highlight that these changes are not explained
by changes over individuals’ pharmacological therapy since
only 4 of them reported adjustments on dosages of ongoing
drugs or alteration for new pharmacological treatments.
6 American Journal of Alzheimer’s Disease & Other Dementias®

Table 3. Caregiver’s Perception on Changes in Physical Activity and care during home confinement and reported increased caregiv-
Physical Function Attributed to Home Confinement Period. ing responsibilities. These outcomes may be explained by the
Total sample
suspension of formal caregivers’ domiciliary assistance, or
(N ¼ 36) support from another family member in providing care. In
Portugal, day care centers were closed on March 18th, and
Physical health although the reopening authorization by health authorities
Changes in physical activity occurred on August 15th most of them remained closed.
Increase (N, %) 0 (0%)
Furthermore, caregivers training/support groups or psychoso-
Identical (N, %) 7 (19.4%)
Reduced (N, %) 29 (80.6%) cial programs were also suspended, as it was also the case of
Changes in sitting time medical appointments and supplementary exams.40
Increase (N, %) 29 (80.6%) As stated by Greenberg et al. (2020)9 the home confinement
Identical (N, %) 6 (16.6%) period amplified caregivers tasks as a result of the daily chal-
Reduced (N, %) 1 (2.8%) lenges and lifestyle restrictions. Drastic modifications in rou-
Falls tines and the closure of services and facilities, normally used by
No (N, %) 28 (77.8%)
caregivers for respite care, have negatively impacted both care-
Yes (N, %) 8 (22.2%)
Physical decline attributed to home givers and people with NCD.9,12 Social isolation may be par-
confinement ticularly deleterious to caregivers, since having a family
No (N, %) 12 (33.3%) member with NCD tends to isolate families due to stigma and
Yes (N, %) 24 (66.7%) deterioration of communication skills.40 Furthermore, count-
Mental health less hours spent caregiving could precipitate feelings of lone-
Changes in medication liness and intensify the stress levels of caregivers.9
No (N, %) 33 (88.9%)
In conclusion, our findings suggest that home confinement
Yes (N, %) 4 (11.1%)
Cognitive decline attributed to home was perceived to have negatively impacted individuals with
confinement NCD and their caregivers in distinct levels. Psychosocial and
No (N, %) 8 (22.2%) mental health support is not only urgently needed for individ-
Yes (N, %) 28 (77.8%) uals with NCD,47,48 but also for their caregivers.12,22
Changes in BSPD Along with confirming emergent findings on the effects of
No (N, %) 20 (55.6%) home confinement in NCD caregiving from the caregivers’
Yes (N, %) 16 (44.4%)
perspective, this study has the merit of further presenting such
an impact by means of standardized measurements in compar-
ison with pre-confinement available assessments. However, it
Boutoleau-Bretonniere and collaborators (2020)23 showed a is important to acknowledge that baseline evaluations were
similar effect of home confinement over neuropsychiatric symp- performed 4 months before home confinement while individ-
tomatology in 38 individuals diagnosed with Alzheimer’s dis- uals were participating in the Body & Brain program activities.
ease. In short, after a mean duration of 27 days of confinement, Therefore, results must be interpreted with caution. Addition-
10 individuals presented an increased mean score on the severity ally, the small sample size does not allow these results to be
subscale of the NPI.23 Additionally, Lara et al. (2020)24 reported generalized.
that there was a statistically significant increase in the levels of
agitation, apathy, and aberrant motor activity on 40 individuals
diagnosed with Alzheimer’s disease or mild cognitive impair-
ment after 5 weeks of domiciliary confinement. Neuropsychia- Implications
tric symptoms in NCD are common, generally become more The COVID-19 health crisis should not overshadow the neu-
severe with disease progression,45 and they contributes strongly rocognitive disorders pandemic. The number of people experi-
to caregiver’s distress and burden.46 Individuals with NCD who encing cognitive decline may increase, not only due to
manifest severe neuropsychiatric symptomatology are at higher COVID-19 direct and indirect effects, but also due to the
risk of institutionalization.46 decreased number of diagnosis of NCD being conducted during
Changes over CarerQoL-7D score evidenced the increase of the outbreak, which will negatively impact people’s prognosis
caregivers’ subjective burden, potentially due to increments on and treatment, and consequently increase difficulties and bur-
the amount of time spent in providing care. Our findings are in den to their family.40 It is urgent to create strategies that may
accordance with Canevelli et al. (2020)25 telephone survey help to provide care, improve the well-being and quality of life,
study, in which nearly 50% of caregivers reported higher levels and reduce care burden in caregivers during this pandemic
of stress and exhaustion when compared to the situation. This crisis may expedite the development of
pre-confinement moment. Overall, in our study caregivers non-pharmacological interventions that can be delivered at the
reported less tolerance to conflicts and increased difficulties care recipients’ home, like home-based cognitive training or
in dealing with exacerbated BPSD, which impacted negatively physical exercise8 and other technology-based approaches.49
their life. Half of the caregivers felt it was harder to provide Lastly, as suggested by Greenberg and collaborators (2020),9
Machado et al 7

Table 4. Pre and Post Confinement Data in ADL Functional Independence, BPSD and Caregiver Burden.

Total sample (N ¼ 36)

Care recipients Pre-confinement Post-confinement p-value

Barthel Index, Mean + SD 92.92 + 9.74 88.33 + 12.82 p ¼ 0.003a

Median (IQR) 95 (80-100) 100 (85-100)
NPI, Mean + SD 17.56 + 11.12 23.28 + 16.81 p ¼ 0.015b
Median (IQR) 16.5 (8.25-23.75) 20 (11-34.25)
Caregiver burden
CarerQoL-7D, Mean + SD 1.37 + 0.38 1.19 + 0.32 p ¼ 0.001b
Median (IQR) 1.43 (1.14-1.71) 1.14 (1-1.43)
CarerQoL-Vas, Mean + SD 6.83 + 2.02 5.81 + 2.55 p ¼ 0.015a
Median (IQR) 7 (5-8) 7 (5-8)
Note: aBased on paired-samples signed test; bBased on Student’s paired t-test.
SD, standard deviation; IQR, interquartile range; p < 0.005 significance level.

caregivers may need to reconnect with pre-confinement exis-
tent support systems or even find new ones.
Researchers and policymakers must analyze and create
strategies to maintain caregivers and people with NCD living
at their homes, safely protected from a possible COVID-19
second wave. In short, particularly daycare centers and dom-
iciliary services should define a contingency plan to warrant
the continuity of care providing services.
Acknowledgments
The authors would like to thank all study participants and their
caregivers.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the
research, authorship, and/or publication of this article: This work was
supported by Portuguese Foundation for Science and Technology:
CIAFEL—Research Centre in Physical Activity, Health and Leisure
[FCT/UIDB/00617/2020], “Body and Brain” Project [POCI-01-0145-
FEDER-031808] and Ph.D. Grant [SFRH/BD/136635/2018]; and
Instituto Português do Desporto e Juventude.
ORCID iDs
Flávia Borges-Machado https://orcid.org/0000-0002-8839-5726
Duarte Barros https://orcid.org/0000-0002-7709-7539
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