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40 The Neuropsychologist 15 – April 2023
doi: 10.53841/bpsneur.2023.1.15.40
Impact of Covid-19 lockdown on the mood,
behaviour, and social activities of people
with brain injury in the UK: Results of a
survey of brain injury professionals’ reports
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
The Covid-19 related lockdown of March–June 2020 in the United Kingdom (UK) may have negatively
affected mood and behaviour of people with brain injuries. Conversely, there may have been benecial
effects due to reduced demand on cognition and emotional regulation. In this online survey study, care co-
ordinators (n=19) assessed the consequences of lockdown on 130 individuals with ABI (range 3–29 clients
per care co-ordinator; 10–65years+; and mostly living in residential care). The majority of reports were of
no change to mood, behaviour, or social functioning (105 ratings). However, respondents reported that 88
(68 per cent) clients presented with changes: 63 clients (48 per cent) had lower mood, higher distress, and
agitation, and were less engaged in usual activities; while 25 clients (19 per cent) were reported to have
improved. Moreover, 13/19 (68 per cent) of respondents reported increased vulnerabilities in their clients,
and 5/19 (26 per cent) reported online exploitation, controlling behaviour from partner and nancial
scams. These data present a mixed picture of how the rst national lockdown affected people with ABI.
Keywords: Covid-19; lockdown; brain injury; wellbeing; care coordination.
Introduction
IN MARCH 2020, the United Kingdom (UK)
government declared a national lockdown
in response to the Covid pandemic. People
with brain injuries often have pre-existing cog-
nitive, social, and physical vulnerabilities and
these may have made it harder for them to
adapt to societal changes (e.g. social isolation
requirements), adopt new behaviours (e.g.
mask-wearing, increased hand washing), and
adapt to new circumstances (e.g. disruption
to routines) (Kolakowsky-Hayner & Goldin,
2020). A cross-sectional study of over 3000
adults in the UK reported an increase in psy-
chological morbidity amongst people with
cognitive and physical disabilities (Jia et al.,
2020), a greater impact of negative psycho-so-
cial effects and higher levels of loneliness
(Groarke et al., 2020; Jia et al., 2020).
Brain injury (both acquired and trau-
matic) is common in the UK (NICE, 2019)
and can lead to long-term cognitive, physical,
psychological, and social impairments (Kuen-
emund et al., 2016). Mood disorders are
common (prevalence of depression following
brain injury is reported to be between 27–64
per cent (Glenn et al., 2001; Jorge et al.,
2004; Osborn et al., 2014), and there is an
increased risk of suicide (Teasdale & Engberg,
2001). Brain injury affects the roles played by
individuals in their family, social and work
environments, characterised by loss of social
and vocational relationships, loss of previously
valued activities and structures, and increased
dependence on others for support to carry out
tasks previously undertaken independently
(Gan et al., 2009; Douglas, 2019; Lefebvre et
al., 2008).
During lockdown, most brain injury
rehabilitation providers ceased to offer
their usual services. In-person assessments
and rehabilitation-focused appointments
The Neuropsychologist 15 – April 2023 41
were cancelled or offered on-line (Coetzer
& Bichard, 2020). This reduction in access
to services is reported to have had negative
effects on the lives of people living with
brain injury. In a survey of over 1000 people
with Acquired Brain Injury (ABI) and their
families by Headway (the UK national brain
injury charity), 57 per cent of respondents
claimed that they were unable to access
rehabilitation and 42 per cent said their
rehabilitation had been negatively affected
by being unable to access face-to-face services
(Tyreman et al., 2021). Additionally, 65 per
cent of the sample reported feeling socially
isolated because of lockdown and 60 per
cent reported that it had a negative impact
on their mental health (including increased
anxiety and fear of their future).
Our study aimed to investigate mood,
behavioural changes, and social effects of
lockdown in people with a brain injury in
the UK. We conducted an on-line, anony-
mous questionnaire-based study with brain
injury care co-ordinators during June–August
2020, and asked them to rate changes to
their clients’ presentations during the period
March–August 2020. Data were analysed
descriptively and using parametric statistics.
Methods and procedure
Questionnaire development
We developed a questionnaire that comprised
12 questions (www.survio.com, see Appendix)
that asked respondents about their ratings of
the frequency of lockdown-related changes
in presentation of their clients (e.g. ‘during
the lockdown, have you or your team noticed any
change in the presentation of your client(s)?’).
Respondents were invited to consider a list of
features (e.g. ‘distress’, ‘absconding’, ‘engage-
ment in activities’), and rate possible changes
observed in their client group during the
rst UK lockdown (March–August 2020), by
ticking one or more of three options (i.e.
deterioration/improvement/no change) for
each feature. Therefore, the data do not refer
to the number of clients who were rated to
have changed or not individually, rather to
respondents’ ratings of change/no change in
the client group.
We also collected some demographic data
by asking the respondents to select the age
group (i.e. ‘< 9’, ‘10–19’, ‘20–29’, ‘30–49’,
‘50–65’, ‘65+’), the gender, and residential
status (i.e. ‘home care’, ‘supported living’,
‘residential care’, ‘other’), of the clients who
showed improvement or deterioration in
their functioning.
We conducted a pilot study with three
respondents and asked for feedback about
the range, scope, comprehensibility, and
structure of the questionnaire. Following
feedback, we rened the questionnaire by
adding two further questions (i.e. ‘budgeting’
and ‘substance abuse’).
We did not collect any identiable infor-
mation about individual clients.
Recruitment
We used an on-line cascading model of recruit-
ment to recruit care co-ordinators (e.g. brain
injury case managers, residential home man-
agers) who provided care and support services
to people with brain injuries. We used a con-
venience sampling approach, and the ques-
tionnaire was circulated via email between
June and August 2020.
Respondents
Of 23 initial responses, 4 were excluded due to
high levels of incomplete data. The remaining
19 respondents supported between 3 and 29 cli-
ents each, with a total of 130 individuals affected
by a brain injury, living either in the community
or in care homes/supported living settings.
Data analysis
The features for which care co-ordinators
reported their ratings of deterioration/
improvement/no change have been clus-
tered in three main domains of functioning,
for data analysis (i.e. mood, behaviour, and
social activities).
We report descriptive statistics about
improvement/deterioration by gender. Rela-
Impact of Covid-19 lockdown on people with brain injury in UK
42 The Neuropsychologist 15 – April 2023
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
tions between variables were examined by
performing a chi-square test of independence.
Results
Of the 19 responses included in the analysis,
gaps still existed in the data. Most clients lived
in residential care.
Age distribution and changes to presentation
The results from the survey indicated that care
co-ordinators were supporting clients across the
lifespan (i.e. 10–65+ years), and although there
were no reports for children under the age of
10, changes to presentation did not seem to
be conned to any particular age-group. We
did not have complete data on the gender and
age-breakdown of the full sample as respond-
ents reported information only on the clients
who improved or deteriorated. The missing age
data reected that respondents’ reports about
age were categorised (e.g. six people in both
the age group 20–65 years and 65+ years).
The charts below suggest that changes in
either positive or negative were similar across
all age groups.
Ratings of change/no change
Regarding respondents’ ratings of changes,
the data showed that 25 clients were reported
to have improved, and 63 showed a deterio-
ration (Table 1). We inferred that the remain-
ing 42 clients did not show any changes to
their presentations.
The data in Table 2 provide a further
breakdown of the respondents’ ratings across
the three domains of functioning (i.e. mood,
behaviour and social).
Mood
Eight of the 19 respondents indicated that
they had observed some signs of improvement
in the mood of the clients on their caseload
(e.g. low mood was reported as improved by 5
respondents), while 16 respondents indicated
that they had observed signs of deteriorating
mood in their clients. The most commonly
endorsed features of deterioration in mood
were low mood (n=14), distress (n=9), and
withdrawal (n=8). Thirteen of the 19 respond-
ents also reported that they had observed
no change, especially in the sub-domain of
distress (n=10).
Behaviour
Five respondents indicated that they had
observed signs of improvement in the behav-
iour of the clients on their caseload, with
decreased agitation endorsed by ve care
co-ordinators and aggression endorsed by
three. Signs of deterioration were noted by
11 respondents, who indicated that they had
observed an increase in their clients’ agitation
Figure 1. Reported age ranges of those considered improved/deteriorated.
The Neuropsychologist 15 – April 2023 43
Table 1. Ratings on improvement/deterioration/no change in client presentations.
NUMBER OF CLIENTS BREAKDOWN MALES FEMALES
No. of clients supported 130 unknown unknown
No. of clients improved 25 (19%) 10 15
No. of clients deteriorated 63 (48%) 45 18
No. of clients showing no change (assumed) 42 (32%) unknown unknown
Table 2: Frequency table showing care co-ordinator ratings of client changes in mood, behavioural and
social domains. Note, multiple responses were permitted, so totals exceed the sample n.
RATINGS BY DOMAINS
Domains Sub-domains Improvement Deterioration No change
MOOD
Low mood 5 14 5
Withdrawing into themselves 588
Distress 4 9 10
Frustration 0 1 0
Reduced motivation 010
TOTAL 14 33 23
BEHAVIOUR
Agitation 5 9 9
Aggressive Behaviour 3 5 13
Absconding 0 0 19
Substance abuse 0 3 16
TOTAL 8 17 57
SOCIAL
Engagement in activities 2 15 6
Vulnerability 4 13 4
Budgeting 1 5 15
Frequency of contact with Care
Co-ordinator 010
Risk of exploitation 050
TOTAL 7 39 25
Impact of Covid-19 lockdown on people with brain injury in UK
44 The Neuropsychologist 15 – April 2023
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
(n=9) following the lockdown restrictions.
However, all 19 respondents reported that the
behaviour of their clients appeared to have
remained stable in at least one or more of
the subdomains listed on the questionnaire.
Within this, the behavioural features which
were most often rated as no change were
absconding (n=19), substance abuse (n=16)
and aggressive behaviour (n=13).
Social
Seven respondents indicated that they had
observed signs of improvement in the domain
of social functioning of the clients on their
caseload, with the most commonly endorsed
feature being reduced vulnerability (n=4).
Conversely, 17 respondents indicated that they
had observed signs of deterioration, especially
in their clients’ level of engagement in activ-
ities (n=15) and their vulnerability (n=13).
Fourteen respondents also indicated that they
had observed no change, and the feature
rated most often as showing no change was
budgeting (n=15).
Gender mix of those considered improved/
deteriorated
The contingency table below (Table 3) shows
a chi-square test of independence performed
to examine the relation between gender and
deterioration. It provides the following infor-
mation: the observed data, the expected data
in parentheses and the chi-square statistic in
square brackets. The relation between these
variables was signicant at p < .01, males were
more likely to be perceived as having deterio-
rated than females, X2 (1, N=88) = 7.5, p= .006.
Vulnerability and risk of exploitation
Twenty-six per cent of respondents reported
that during the lockdown their clients were
increasingly exposed to risk of being inu-
enced or exploited, because of their cognitive
and social difculties. They reported ve dif-
ferent circumstances (i.e. one report each),
including online exploitation, sexploitation,
cyber scam, controlling behaviour from part-
ner, and a bogus caller who gained entry to
client’s home.
Discussion
The present study explored the impact of the
lockdown restrictions on people with a brain
injury, via the reports of their care co-ordina-
tors. The reports presented a mixed picture.
Of the 130 clients supported by the respond-
ents, most had responded well to lockdown
and in most domains, the reports were of no
change to mood, behaviour, or social function-
ing (105 ratings), as compared with 89 reports
of deterioration and 29 of improvement.
This result may reect that most clients
lived in residential care and were still
supported to some extent by staff. External
activities may have ceased, but essential
support may have been available. Some clients
were noted to have improved in the domain
of mood (29 ratings), especially regarding
reduced withdrawal and distress. As the cogni-
tive burden and demands of engaging in
externally focused activities (e.g. shopping,
community activities) reduced, some clients
may have seemed to have improved in their
daily functioning. Lastly, this survey focused
on the period March–August 2020 (i.e. rst
few months of the rst national lockdown)
Table 1. Ratings on improvement/deterioration/no change in client presentations.
CHI SQUARE TEST
Improvement Deterioration Row Totals
Males 10 (15.62) [2.02] 45 (39.38) [0.80] 55
Females 15 (9.38) [3.38] 18 (23.62) [1.34] 33
Column Totals 25 63 88 Grand Total
The Neuropsychologist 15 – April 2023 45
and subsequent lockdowns may have had
different effects on people with brain injuries.
However, there was a substantial propor-
tion who were rated to have deteriorated in
mood, behaviour, and social functioning (89
ratings), and deterioration was more likely
to have been reported in men than women.
Note that these data do not provide us with
information about the specic factors that
contributed to worsening in clients’ presenta-
tion, nor the direct outcomes by gender, only
care co-ordinator perceptions of these.
Social engagement/activities seemed
particularly vulnerable to deterioration.
This is not surprising as many people with
a brain injury depend on others (e.g. family
members, care staff) to assist them with
their daily activities. As lockdown required
everyone to reduce their level of activity
and social contact, it is understandable that
people with a brain injury had less access
to their previous routine activities and
resources. People with brain injury might
also have been less able to adapt to enforced
isolation and less well able to use technology
to compensate for in-person activities.
Of reported changes in the three domains,
the one that showed least change was Behav-
iour. This was particularly true for absconding
behaviours and substance misuse. This may
reect that most clients lived in residen-
tial homes where there was still some level
of support. Clients may have been trying
to respond to a sense of national crisis by
supporting each other and understanding the
need to make changes to their own routines
because of the crisis. Staff may have been
required to adopt very consistent boundaries
regarding the ways in which they supported
the clients and may have been very clear about
what was, and was not, possible within the lock-
down rules. We might have expected increased
attempts of absconding due to the restrictions
placed on them, but this was not reported.
A possible explanation could lie in the clients’
level of insight and how this affected their
understanding of rules. Clients who abscond
usually present with low level of insight and
understanding of the limitations they are
subject to (e.g. why they are in a residential
setting, why they cannot go out on their own).
We can therefore expect them not to under-
stand and respect the additional restrictions/
rules when these were introduced from the
pandemic. On the other hand, people who
were not used to absconding might have been
(a) presenting with a better level of insight
that made them afraid of acquiring Covid and
may have been motivated to protect them-
selves from acquiring the infection, (b) having
1:1 support.
While mood deteriorated for many people,
some clients were observed to have improved,
albeit this was less frequently reported. It is
understandable that lockdown restrictions
would have had a negative impact on mood
due to less family and social factors and
activities. However, survey respondents also
reported improvements to mood with some
clients experiencing better mood, less with-
drawal, and less distress. Factors to account for
these reports could be less cognitive demand,
reduced social anxiety, less engagement in
challenging activities (rehabilitation or other-
wise) and more time to engage in preferred
activities (e.g. watching TV).
Our data indicate that males may be
more vulnerable than females to deteriora-
tion across all domains during lockdown.
We did not collect data about the severity of
injury, or the neurocognitive consequences
of the injuries and it may be that males had
more severe injuries than females. However,
our study was hampered by incomplete data
and other studies with larger sample sizes
would be required to investigate this tentative
conclusion. Generally, males are more likely
than females to use alcohol and drugs (Bjork
& Grant, 2009) that may have affected coping
skills when the lockdown was introduced.
Adolescents and adult males are generally
more at risk for moderate to severe head injury
at an earlier age than females (Scheenen et al.,
2016) and do not develop mature cognitive
skills including problem-solving, resilience
and social cognition. The lockdown restric-
Impact of Covid-19 lockdown on people with brain injury in UK
46 The Neuropsychologist 15 – April 2023
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
tions have often reduced the demand of social
interaction and engagement in activities, and
this may have reduced the level of anxiety
from which females are more likely to suffer
(Scholten et al., 2016).
A signicant minority of care co-ordinators
reported that their clients were more vulner-
able to risk of exploitation than before
lockdown. This may reect reduced provision
of care, less contact with family, friends and
professional staff who may have previously
provided a buffer against exploitation.
There are several limitations to this survey.
Our respondents were self-selected and
supported people with brain injury mostly in
residential settings. This suggests that clients
had moderate-severe brain injuries and repre-
sent a small proportion of people living with
brain injury in the UK.
There were missing data that affect the
quality of the data set. We tried to make the
questionnaire as short as possible to reect
that potential respondents were extremely
busy during lockdown and would be less likely
to engage with a more detailed and lengthier
questionnaire. However, we did not ask the
total number of males and females the care
co-ordinators included in their responses.
Instead, we asked for a rating of change (e.g.
improvement) and then asked how many of
those were females/males. This questionnaire
design made the data difcult to interpret.
However, this research was undertaken
at a uniquely difcult time. As professionals
who work with people with brain injury, we,
and all our respondents were coping with
unprecedented societal, personal, and clinical
challenges that affected the ways in which we
could provide services for our clients. The
missing data reect both the extraordinary
pressures under which the care co-ordinators
were working and provide the context in which
they generously gave their time to responding
to our study questions while having to cope
with unprecedented personal, family, and clin-
ical challenges. Additionally, every single stage
of this study was conducted remotely, from the
study design to the development of the ques-
tionnaire tool to the recruitment and data
collection and writing up. From the perspec-
tive of 2023 where remote and video working
has become standard, this does not now seem
unusual, but in 2020 this was not common.
Adapting to the restrictions imposed by lock-
down affected the data quality as we were
not able to meet with the care co-ordinators
personally to check discrepancies, accuracy, or
quality of their responses. We have all become
more skilled at working via video platforms
since 2020 and if we were to conduct any
further research, we would have learned some
valuable lessons about methodology and data
quality.
Conclusion
People with brain injuries are a vulnerable
group. Our survey occurred during the rst
UK national lockdown in 2020 and we do not
know how people with brain injuries fared sub-
sequently. The data showed a mixed picture
with most people showing some deterioration
in at least one domain of functioning (mood,
behaviour, social engagement). Although it
is reasonable to expect that vulnerable peo-
ple would show deterioration because of the
global crisis, some people were reported to
have improved.
Authors
Ms Lucilla Carlacci De Mattia,
Clinical Psychologist in Neurorehabilitation
lucilla@npsych-rehab.com;
Dr Tomás Campbell,
Consultant Clinical Psychologist in
Neurorehabilitation
tomas@npsych-rehab.com; and
Dr Neil Parrett,
Consultant Clinical Psychologist in
Neurorehabilitation
neil@npsych-rehab.com
Correspondence
Dr Tomás Campbell: NPsych Rehab, 7
Ducketts Mead, Roydon, Essex, CM19 5EG.
tomas@npsych-rehab.com
The Neuropsychologist 15 – April 2023 47
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Impact of Covid-19 lockdown on people with brain injury in UK
48 The Neuropsychologist 15 – April 2023
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
Dear Sir/Madam,
Thank you for visiting us.
By filling out this 5-10 minute survey you will help us obtain the very best results.
The lockdown introduced in response to the Covid-19 emergency has globally impacted on the
life of everyone. For people living with an Acquired Brain Injury (ABI), this has often resulted in
changes to normal routines, access to care and rehabilitation, engagement in usual activities and
contact with social support systems.
Depending on each individual situation, these changes may have led to either an increased risk and
vulnerability (i.e. exacerbating current difficulites and mental health issues) or beneficial effects
including a reduction in challenging behavious in response of more structure and routine.
Providing information about how your clients have responded to the lockdown, may help us
identify further risk and protective factors important in the rehabilitation process, as well as to
offer interventions ever more tailored to each individual with ABI.
1. How many clients with ABI do you support?
2. What is your professional role?
Question instructions: Select one answer
• Case Manager
• Home Manager
• Healthcare Professional
• Other
Impact of Covid-19 lockdown on the lives of people with ABI
Appendix A – Questionnaire Template
The Neuropsychologist 15 – April 2023 49
3. During the lockdown, have you or your team noticed any change in the
presentation of your clients?
Question instructions: Select one or more answers in each row
4. If ‘Other’, please specify
5. During the lockdown, has any of your clients being increasingly exposed to risk of
being influenced or exploited, as a result of their cognitive and social difficulties?
Question instructions: Select one answer
• Yes
• No
6. If ‘Yes’, please briefly describe what happened
Question instructions: Specify to what extent your clients have been targeted because of
their difficulties, being vulnerable and influenceable
POSITIVE CHANGES
These may include: more adherence to routine and support plan, increase participation and
engagement, improved positive behaviour or reduced anxiety (as a result of having few
choices, less distraction, resitricted acess to substances or community risk factors).
Decreased Same as before Increased
Mood □□□
Withdrawing into themselves □□□
Distress □□□
Agitation □□□
Aggressive behaviour □□□
Engagement in activities □□□
Absconding □□□
Vulnerability □□□
Budgeting □□□
Substance Abuse □□□
Other □□□
Impact of Covid-19 lockdown of people with brain injury in UK
50 The Neuropsychologist 15 – April 2023
Lucilla Carlacci De Mattia, Tomás Campbell & Neil Parrett
7. How many of your clients showed an improvement?
8. How many of them were males?
9. What’s the age of your clients showing an improvement?
Question instructions: Select one or more answers, according to your clients
• < 9
• 10-19
• 20-29
• 30-49
• 50-65
• 65+
• None of my clients have benefited from the lockdown
10. Please select the support setting of these clients
Question instructions: Select one or more answers
• Home Care
• Supported Living
• Residential Care
• Other
NEGATIVE CHANGES
These may include: Increase in mood disorders (e.g. depression, anxiety), increase of
chanllenging behaviour or distress, withdrawing into themselves, self-neglect, lack of
engagment in rehabilitation or activites (as a result of difficulties to understand the
situation and adapt to changes, reduced contact with family and friends, limited access to
usual comunity resources).
11. How many of your clients showed deterioration?
12. How many of them were males?
The Neuropsychologist 15 – April 2023 51
13. What’s the age of your clients showing deterioration?
Question instructions: Select one or more answers, according to your clients
• < 9
• 10-19
• 20-29
• 30-49
• 50-65
• 65+
• None of my clients have benefited from the lockdown
14. Please select the support setting of these clients
Question instructions: Select one or more answers
• Home Care
• Supported Living
• Residential Care
• Other
Impact of Covid-19 lockdown of people with brain injury in UK