Topics in Stroke Rehabilitation

ISSN: 1074-9357 (Print) 1945-5119 (Online) Journal homepage: https://www.tandfonline.com/loi/ytsr20

Stroke survivor cognitive decline and psychological

wellbeing of family caregivers five years post-
stroke: a cross-sectional analysis

Daniela Rohde, Eva Gaynor, Margaret Large, Orla Conway, Kathleen

Bennett, David J Williams, Elizabeth Callaly, Eamon Dolan & Anne Hickey

To cite this article: Daniela Rohde, Eva Gaynor, Margaret Large, Orla Conway, Kathleen Bennett,
David J Williams, Elizabeth Callaly, Eamon Dolan & Anne Hickey (2019): Stroke survivor cognitive
decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional
analysis, Topics in Stroke Rehabilitation, DOI: 10.1080/10749357.2019.1590972

To link to this article: https://doi.org/10.1080/10749357.2019.1590972

Published online: 23 Mar 2019.

Submit your article to this journal

Article views: 30

View Crossmark data

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=ytsr20
TOPICS IN STROKE REHABILITATION
https://doi.org/10.1080/10749357.2019.1590972

ARTICLE

Stroke survivor cognitive decline and psychological wellbeing of family caregivers

five years post-stroke: a cross-sectional analysis
Daniela Rohde a, Eva Gaynorb, Margaret Largec, Orla Conwaya, Kathleen Bennetta, David J Williamsd,
Elizabeth Callalye, Eamon Dolanf and Anne Hickeya
a
Population Health Sciences, Royal College of Surgeons in Ireland, Dublin, Ireland; bDepartment of Medicine, Royal College of Surgeons in Ireland,
Dublin, Ireland; cClinical Research Centre, Royal College of Surgeons in Ireland, Beaumont Hospital, Dublin, Ireland; dGeriatric and Stroke Medicine,
Royal College of Surgeons in Ireland, Beaumont Hospital, Dublin, Ireland; eGeriatric Medicine, Mater Misercordiae University Hospital, Dublin,
Ireland; fGeriatric Medicine, Connolly Hospital, Dublin, Ireland

ABSTRACT ARTICLE HISTORY

Background: Family members frequently provide long-term care for stroke survivors, which can Received 22 October 2018
lead to psychological strain, particularly in the presence of cognitive decline. Accepted 2 March 2019
Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, KEYWORDS
and to explore associations with stroke survivor cognitive decline. Stroke; cerebrovascular
Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and disease; cognitive
Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self- impairment; caregivers;
report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and anxiety; depression;
CES-D. Cognitive decline in stroke survivors was assessed from the caregiver’s perspective using the psychological distress
IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic
regression models.
Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symp-
toms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both
the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly
more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or
anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors
without cognitive decline.
Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symp-
toms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly
associated with both depressive and anxious symptoms of family caregivers. Family members
play a key role in the care and rehabilitation of stroke patients; enhancing their psychological
wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors
and families.

Introduction Lack of support for caregivers of stroke survivors has

also been noted in Ireland, as the most recent National
Many stroke survivors experience some functional disability,
Stroke Audit reported that the needs of caregivers in the
including cognitive and motor impairments, psychological
acute stage post-stroke were only assessed in half of all
distress, and personality changes, and therefore require long-
cases.9 The Irish Action on Secondary Prevention
term care.1,2 Family members frequently assume the primary
Interventions and Rehabilitation in Stroke (ASPIRE-S)
responsibility for providing long-term support for stroke sur-
study, which included 162 caregivers of stroke survivors
vivors, assisting with feeding and bathing, as well as with
at six months post-stroke, reported that caregivers identi-
taking medications, managing finances, and attending
fied substantial levels of dissatisfaction with community
appointments.3–5 While caregiving has been associated with
and hospital services, as well as with the information they
positive feelings, including a sense of fulfillment and satisfac-
received.8 Further, this study reported that increased levels
tion, it can also lead to emotional, social, and financial strains
of dissatisfaction with services were associated with higher
for family members.3–6 Low health-related quality of life and
levels of caregiver depressive and anxious symptoms.8
high levels of burden, anxiety, and depression have been
Elevated levels of caregiver stress, anxiety and depression
reported among caregivers of stroke survivors.1,7,8 These dif-
can adversely affect stroke survivor rehabilitation and
ficulties are exacerbated by social isolation, lack of informa-
recovery and may contribute to hospital readmissions or
tion and poor long-term health and social care support.4
institutionalization.4,10,11

CONTACT Daniela Rohde danielamrohde@rcsi.ie Division of Population Health Sciences (Psychology), Royal College of Surgeons in Ireland, Beaux Lane
House, Lower Mercer St., Dublin 2, Ireland
Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/ytsr.
© 2019 Taylor & Francis Group, LLC
2 D. ROHDE ET AL.
Caregiver psychological distress may decrease in the
longer term, as family members adapt to their roles and
develop coping strategies, and as stroke survivors improve
functionally.3,10,12–14 However, cognitive impairment,
which is common post-stroke and can deteriorate
indefinitely15, has been linked with caregiver depression
and anxiety.8,16 Few studies have specifically examined the
associations between stroke survivor cognitive impairment
and caregiver wellbeing to date, with inconsistent results.
A Finnish study of 98 caregivers followed-up over 18
months post-stroke found no association between care-
giver depression as assessed by the Beck Depression
Inventory and cognitive impairment of stroke survivors
in any assessment completed as part of a comprehensive
neuropsychological test battery, although global cognitive
impairment was not considered.14 In Ireland, the ASPIRE-
S study reported that caregiver anxiety, but not depressive
symptoms, were associated with stroke survivor global
cognitive impairment assessed using the Montreal
Cognitive Assessment (MoCA) at six months post-stroke.8
Considering the uncertain recovery of patients with
stroke, longer-term outcomes for caregivers are difficult
to predict.10 While many caregivers continue to face
unmet needs years after the initial stroke, their wellbeing
is often overlooked.3,11 Effective support can result not
only in improved mood and quality of life for caregivers,
but may also lead to an improvement in stroke survivor
physical, emotional and quality of life outcomes 3,4,13,
highlighting the need for routine and repeated assess-
ments of caregiver wellbeing.7,8,10 The majority of studies
of caregivers of stroke survivors have focused on the first
1–2 years post-stroke, with a lack of Irish and interna-
tional data on the psychological wellbeing of family care-
givers in the longer term. While the limited data that are
available on associations between stroke survivor cognitive
impairment and caregiver wellbeing have been inconsis-
tent, to our knowledge, no study to date has considered
whether a decline in stroke survivor cognitive function is
associated with increased caregiver anxiety or depression.
The aims of this study, therefore, were to profile psycho-
logical wellbeing of family caregivers at 5 years post-
stroke, and to investigate the association between care-
giver anxiety and depression and stroke survivor cognitive
decline.
Materials and methods
Study design
This study involved a cross-sectional analysis of data
collected as part of a 5-year follow-up of the prospective
observational ASPIRE-S cohort study 2,8,17, and conformed
to STROBE (Strengthening the Reporting of Observational
Studies in Epidemiology) Guidelines.18 256 acute ischemic
stroke survivors, recruited from three Dublin hospitals,
were assessed at six months post-stroke2,8, and followed
up at 5 years. (2016–2017,19,20)
Participants
Participants in the present study were the family members of
stroke survivors who participated in the 5-year ASPIRE-S follow-
up, excluding formal (paid) or other non-family caregivers
(Figure 1). The methods have been previously described.19
Briefly, all stroke survivors who were assessed at 6 months and
who were still alive at 5 years were eligible to participate. At five
years, 63 stroke survivors had died and 86 were lost to follow-up,
with 108 stroke survivors included in the 5-year follow-up (Figure
1). Stroke survivor assessments were conducted in person at the
participant’s home, one of the study hospitals, or another location
convenient to the stroke survivor according to their preference. In
addition to a patient assessment, family members of stroke survi-
vors, where available, were asked to complete a self-report ques-
tionnaire, including an informant measure of cognitive decline,
and assessments of family member psychological wellbeing.
Questionnaires were sent by post prior to the stroke survivor
assessment and checked in person with the caregiver by the
research team during the 5-year assessment.2,8
Stroke survivor cognitive impairment
The Informant Questionnaire on Cognitive Decline in the
Elderly (IQCODE) (short version)21 was included in the
family member questionnaire to assess cognitive decline of
stroke survivors from the caregiver’s perspective. The
IQCODE is a reliable tool for assessing general cognitive
decline, and is not influenced by stroke survivor character-
istics that might affect their performance on other cognitive
assessments, such as age, level of education, or presence of
aphasia.22–24 The short version of the IQCODE consists of 16
items, including questions on the stroke survivor’s ability to
remember things about themselves and family, to recall recent
conversations or events, to learn new things or follow a story,
and to make decisions or handle finances. Informants are
asked to compare what the person is like now to what they
were like 10 years ago, using the following response options: 1
(much improved), 2 (a bit improved), 3 (no change), 4 (a bit
worse), 5 (much worse). Scores are then averaged to provide
a mean scale score that ranges from 1 to 5, with a score of 1
representing an improvement in cognitive function, a score of
3 representing no change, and scores above 3 indicating
cognitive decline.22,25 There is no consensus on the optimal
cut-off score, and a variety of cut-offs, ranging from 3.01 to
3.75, have been suggested.25 As this study was interested in
identifying any degree of cognitive decline not limited to
dementia23, a cut-off of >3.3 was used to identify cognitive
decline.26–28
As part of the stroke survivor assessments at both six
months and 5 years post-stroke, the Montreal Cognitive
Assessment (MoCA)29 was administered by a member of
the research team. The MoCA is a 30-point screening tool
that assesses global cognitive function. Concerns have been
raised over a lack of specificity of the originally recommended
cut-off of <26. We therefore used a cut-off of <2430,31 to
identify stroke survivors with cognitive impairment.
A decrease of 2+ points on the MoCA has been reported to
 TOPICS IN STROKE REHABILITATION 3

Figure 1. Flow chart of family member participants in the 5-year follow-up of ASPIRE-S stroke survivors.
$
One stroke survivor was assessed at 5 years, but subsequently died before the end of the study period, and is included in both numbers.

be indicative of cognitive decline according to a more com- Ethical approval

prehensive neuropsychological test battery32, and was applied
in this study to identify stroke survivors with evidence of
cognitive decline.
Family member psychological wellbeing
In order to assess the psychological wellbeing of family mem-
bers, the self-completion questionnaire included a measure of
anxiety (the anxiety sub-scale from the Hospital Anxiety and
Depression Scale (HADS-A))33, and a measure of depression
(Center for Epidemiologic Studies Depression scale (CES-
D)).34 The recommended cut-offs for each measure were
used to identify the presence of anxious (HADS-A scores
≥8) and depressive symptoms (CES-D scores ≥16).
This study was approved by the research ethics committees of
the three participating hospitals, and the Royal College of
Surgeons in Ireland. All participants provided informed, writ-
ten consent.
Data analysis
Descriptive statistics are presented using means (SD) and
frequencies (%). Associations between family member
anxious and depressive symptoms and stroke survivor cogni-
tive decline were explored using logistic regression models.
We created a composite cognitive decline variable, which
classified stroke survivors as experiencing cognitive decline
4 D. ROHDE ET AL.

if decline was evident on both the IQCODE and MoCA. As
the majority of caregivers were female, married, and living
with others, analyses were adjusted for age of family members
only. Odds ratios (OR) and 95% confidence intervals (CI) for
the association between stroke survivor cognitive decline and
family caregiver anxiety and depression are presented.
Goodness of fit was assessed using the Hosmer and
Lemeshow goodness of fit test. To maximize available data,
pairwise deletion of missing data was used. Statistical signifi-
cance was set at p< .05.
Results
Family caregiver profiles at 5 years post-stroke
Seventy-eight family member questionnaires were returned.
Demographic profiles are presented in Table 1. The majority
of respondents were spouses/partners of stroke survivors
(62.8%) and adult children (28.2%). The mean age of family
members was 59.0 years (SD 16.0). The majority of family
caregivers were female (80.8%) and married or cohabiting
(81.8%). Approximately half were working full- or part-time
(49.3%).
Total HADS-A scores ranged from 0 to 16, with a mean of
3.8 (SD 3.8). Of family members, 19.4% had symptoms of
anxiety according to HADS-A scores ≥8. Total CES-D scores
ranged from 0 to 49, with a mean of 10.9 (SD 10.9).
Depressive symptoms according to CES-D scores ≥16 were
evident in 25.5% of family members.
an improvement of 5 points), to 11 (indicating a decline of 11
points). A total of 18 stroke survivors (25.0%) had no evi-
dence of decline from six months to 5 years, with either no
change or an improvement in MoCA scores. For those with
a decline of at least 1 point between the two assessments (n =
54), the mean decline was 4.0 points (SD 2.5, range 1–11
points).
Twenty-two stroke survivors (29.0%) had evidence of cog-
nitive decline according to the IQCODE, while 46 (63.9%)
had evidence of cognitive decline according to a decline in
MoCA scores of 2+ points. Eleven (16.7%) were classified as
experiencing cognitive decline according to both instruments
(Table 2).
Family members of stroke survivors with cognitive decline
identified by the IQCODE were significantly more likely to
report symptoms of depression [age-adjusted OR (95% CI):
6.80 (1.65, 28.04)] or anxiety [age-adjusted OR (95% CI): 6.14
(1.66, 22.70)] than family members of stroke survivors with-
out evidence of cognitive decline (Table 3). There were no
associations between cognitive decline as identified by the
MoCA and family member symptoms of anxiety [age-
adjusted OR (95% CI): 0.80 (0.22, 2.91)] or depression [age-
adjusted OR (95% CI): 1.61 (0.35, 7.42)]. Family members of
stroke survivors with cognitive decline according to both
instruments were significantly more likely to report symp-
toms of depression [age-adjusted OR (95% CI): 5.94 (1.14,
30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.25,
25.54)] than family members of stroke survivors without
evidence of cognitive decline.

Stroke survivor profiles Discussion

At 5 years post-stroke, the mean age of stroke survivors was
68.3 (SD 13.1). The majority were male (n = 56, 71.8%).
At six months post-stroke, MoCA scores ranged from 16
to 30, with a mean score of 25.9 (SD 3.4). Sixteen stroke
survivors (22.2%) had evidence of cognitive impairment at
six months post-stroke (scores <24). At 5 years, MoCA scores
ranged from 11 to 30, with a mean score of 23.3 (SD 5.0).
Thirty-two stroke survivors (43.2%) had evidence of cognitive
impairment at 5 years post-stroke. Differences in MoCA
scores from six months to 5 years ranged from −5 (indicating
This study explored psychological wellbeing of family care-
givers at 5 years post-stroke. The majority of family caregivers
were female and were spouses or partners of stroke survivors,
followed by adult children and siblings, which is in line with
other studies of stroke caregivers.14 We found that a fifth of
family members of stroke survivors at 5 years post-stroke had
evidence of anxious symptoms, while a quarter had evidence
of depressive symptoms. These estimates are broadly similar
to previous studies, which have reported evidence of depres-
sive symptoms in one fifth to one third of caregivers8,10,14,

Table 1. Demographic profile of family members 5 years post-stroke by presence of anxious and depressive symptoms.
Depression (n = 51) Anxiety (n = 72)
Total sample n (%) n (%)
n (%) Depressive symptoms None Anxious symptoms None
Age (Mean, SD) (n = 75) 59.0 (16.0) 54.5 (17.0) 59.4 (16.1) 53.1 (17.9) 61.1 (15.0)
Sex Female 63 (80.8) 12 (29.3) 29 (70.7) 13 (22.4) 45 (77.6)
Male 15 (19.2) 1 (10.0) 9 (90.0) 1 (7.1) 13 (92.9)
Marital status Married/cohabiting 63 (81.8) 9 (21.4) 33 (78.6) 11 (19.0) 47 (81.0)
Single or divorced 14 (18.2) 4 (44.4) 5 (55.6) 3 (23.1) 10 (76.9)
Living arrangements Living alone 6 (8.1) 1 (33.3) 2 (66.7) 1 (20.0) 4 (80.0)
Living with others 68 (91.9) 12 (26.1) 34 (73.9) 12 (19.1) 51 (81.0)
Education Primary school 12 (16.0) 2 (25.0) 6 (75.0) 1 (9.1) 10 (90.9)
Secondary school 34 (45.3) 8 (33.3) 16 (66.7) 8 (23.5) 26 (76.5)
Third level 29 (38.7) 3 (16.7) 15 (83.3) 5 (20.8) 19 (79.2)
Occupational status Working full-time or part-time 34 (49.3) 5 (22.7) 17 (77.3) 5 (16.1) 26 (83.9)
Not working/retired 35 (50.7) 5 (20.0) 20 (80.0) 6 (18.2) 27 (81.8)
Relationship to stroke patient Spouse/partner 49 (62.8) 8 (23.5) 26 (76.5) 9 (19.2) 38 (80.9)
Other relative (sibling/adult child/parent) 29 (37.2) 5 (29.4) 12 (70.6) 5 (20.0) 20 (80.0)
 TOPICS IN STROKE REHABILITATION 5

Table 2. Stroke survivor cognitive profiles 5 years post-stroke and presence of family member anxious and depressive symptoms.
Depression (n = 51) Anxiety (n = 72)
Total sample n (%) n (%)
Cognitive decline n (%) Depressive symptoms None Anxious symptoms None
IQCODE Cognitive decline 22 (28.6) 9 (50.0)** 9 (50.0) 9 (40.9)** 13 (59.1)
No cognitive decline 55 (71.4) 4 (12.1)** 29 (87.9) 5 (10.0)** 45 (90.0)
MoCA Cognitive decline 46 (63.9) 8 (26.7) 22 (73.3) 8 (18.2) 36 (81.8)
No cognitive decline 26 (36.1) 3 (18.8) 13 (81.3) 5 (22.7) 17 (77.3)
Composite IQCODE/MoCA Cognitive decline 11 (16.7) 5 (55.6)* 4 (44.4) 5 (45.5)* 6 (54.6)
No cognitive decline 55 (83.3) 6 (18.2)* 27 (81.8) 7 (14.0)* 43 (86.0)
*p< .05, **p< .01

Table 3. Age-adjusted ORs (95% CI) for logistic regression models of depressive and anxious symptoms of family members, based on cognitive decline of stroke
survivors.
Depressive symptoms Anxious symptoms
OR (95% CI)
IQCODE
Cognitive decline 6.80 (1.65, 28.04)** 6.14 (1.66, 22.70)**
Model Χ2= 8.69, p = .013, Χ2= 10.77, p= .0046,
pseudo R2 = 0.153, n = 49 pseudo R2 = 0.155, n = 69
MoCA
Cognitive decline 1.61 (0.35, 7.42) 0.80 (0.22, 2.91)
Model Χ2= 1.44, p = .488, pseudo R2 = 0.029, n = 44 Χ2= 3.04, p = .219, pseudo R2 = 0.047, n = 63
Composite IQCODE/MOCA
Cognitive decline 5.94 (1.14, 30.89)* 5.64 (1.24, 25.54)*
Model Χ2= 5.42, p = .067, pseudo R2 = 0.115, n = 40 Χ2= 7.57, p = .023, pseudo R2 = 0.128, n = 58
*p< .05, **p< .01

while anxious symptoms have been reported in 30% of stroke
caregivers six months post-stroke.8 Differences in the preva-
lence of anxious and depressive symptoms between studies
are likely due to differences in study populations, the use of
different methods of assessment and varying follow-up peri-
ods. The majority of previous studies have included shorter
follow-up times, and only a small number have reported on
the relationship between stroke survivor cognitive impair-
ment and caregiver psychological wellbeing, with inconsistent
results.8,14,16,35
We found that significantly increased levels of family
member anxious and depressive symptoms were associated
with stroke survivor cognitive decline assessed using the
IQCODE alone, but not the MoCA. Family members of
stroke survivors with evidence of decline on both assessments
were also more likely to report symptoms of anxiety and
depression. This finding suggests that informant characteris-
tics, including anxiety and depression, may affect the subjec-
tive ratings on the IQCODE.22,24 Some authors have
suggested that informants may overestimate their family
member’s cognitive decline as a result of anxiety, burden, or
unrealistic expectations of their recovery.24,36 Nygaard et al.
reported that informant stress was significantly associated
with scores on the IQCODE, but not the Mini Mental State
Examination (MMSE), suggesting that family members’ per-
ceptions of their relative’s cognitive function might be influ-
enced by their own wellbeing, burden and stress.37 The
IQCODE may be less appropriate in stroke, as some items
might be difficult to score for stroke survivors with physical
disabilities, while its focus on items relating to memory may
be less sensitive to vascular cognitive impairments with
executive function deficits.23
While a decline of 2 or more points on the MoCA is
associated with decline as identified by a neuropsychological
test battery32, this classification includes stroke survivors who
declined by 2+ points, but who remained above recom-
mended MoCA cut-offs for cognitive impairment at both
time points. This could explain the high prevalence of cogni-
tive decline found when using this classification, as well as the
lack of association with family member anxious or depressive
symptoms. The use of the IQCODE along with other assess-
ments of cognitive performance, such as the MoCA or a more
detailed neuropsychological test battery, may improve the
identification of cognitive decline22,36, and we found that
family members of stroke survivors with evidence of decline
according to both instruments were more likely to report
symptoms of anxiety or depression. Our study contributes
to the sparse literature in this area by reporting on the
association between stroke survivor cognitive decline and
psychological wellbeing of family caregivers in the longer-
term post-stroke, and highlights potential problems asso-
ciated with the use of the IQCODE in isolation.
Caregiver difficulties can be exacerbated by social isolation,
lack of information, poor long-term health and social care
support.4 Health professionals frequently assume that a family
member will adopt the role of primary caregiver of a stroke
survivor, without providing practical information on what type
of care may be required or what to expect.3,4 Caregivers may not
receive adequate information on possible post-stroke complica-
tions, such as cognitive impairment, communication difficulties,
or mood changes, coupled with a lack of information on long-
term prognosis and available support services.4 Routine and
repeated assessments of caregiver wellbeing, along with imple-
mentation of interventions, are needed to support family mem-
bers in their roles as primary caregivers.10 The provision of
support services throughout the post-stroke care trajectory has
the potential to improve physical and emotional outcomes in
both family caregivers and stroke survivors.4,11,38
6 D. ROHDE ET AL.
Strengths and limitations
This study has a number of strengths, including the length of
follow-up. Most previous studies have included shorter fol-
low-up periods, with a lack of data on the longer-term psy-
chological outcomes of family members of stroke survivors.
Our study provides important information on caregiver well-
being in the longer term. Few studies to date have explored
the potential links between cognitive impairment of stroke
survivors and the psychological wellbeing of caregivers.
Cognitive impairment is common post-stroke and can
increase disability and levels of dependency. As highlighted
by our study, cognitive decline may increase caregiver depres-
sive and anxious symptoms, suggesting that family members
of stroke survivors experiencing cognitive decline may require
additional supports and services.
This study has a number of limitations, including the
reliance on self-report to assess caregiver anxious and depres-
sive symptoms. As we applied the recommended scoring
thresholds for both assessments, our analysis does not con-
sider the severity of caregiver anxious or depressive symp-
toms, which may vary as a function of stroke survivor
cognitive decline. While every effort was made to follow up
all patients still alive from the original study, older stroke
survivors and those with evidence of cognitive impairment
and moderate to severe disability at six months post-stroke
were significantly more likely to be lost to follow-up (data not
shown), which is likely to have lead to an underestimation of
the prevalence of cognitive impairment and decline in this
cohort, and therefore an underestimation of the association
between caregiver wellbeing and stroke survivor cognitive
decline. Stroke survivors with cognitive impairment were
also more likely to have died before the 5-year follow-up
assessments.20 Individuals with more severe cognitive impair-
ment and those with dementia are therefore underrepresented
in this study.
As this is a follow-up study, the sample size was based on the
availability of participants rather than a statistical power calcu-
lation. Due to the small sample size, we did not adjust for
multiple comparisons. While we adjusted for caregiver age in
our analyses, due to the limited sample size and observational
nature of this study, there are likely to be other confounding
factors. Other recent studies on stroke caregivers have similarly
presented unadjusted results (e.g.8,35), and there is a need for
larger studies of longer-term stroke caregiver outcomes. The
majority of family caregivers with evidence of anxious or
depressive symptoms in our study were female. While care-
givers in general are more likely to be female, a larger study is
required to investigate differences in the experience of psycho-
logical distress between male and female caregivers.
The present analysis is based on data collected as part of
a larger study that followed up stroke survivors at 5 years post-
stroke. As our study is based on a follow-up of stroke survivors
rather than family members, our analyses essentially included
a convenience sample of family caregivers, and therefore may
not be generalizable to family caregivers of stroke survivors in
general. Finally, this study only considered depressive and
anxious symptoms. Psychological wellbeing of caregivers also
encompasses burden, stress8, and positive aspects of caregiving,
which can be affected by stroke survivor cognitive impairment
and should be assessed in future research. Future research
should also consider the potential impact of severity of cogni-
tive impairment, as family members of stroke survivors with
more severe cognitive impairment and dementia may be parti-
cularly at risk of experiencing increased levels of distress.
Conclusion
One-fifth of family caregivers exhibited symptoms of anxiety
at 5 years post-stroke, while a quarter had depressive symp-
toms. Stroke survivor cognitive decline as assessed by care-
givers was significantly associated with depressive and
anxious symptoms in family members at 5 years post-
stroke. Family members play a key role in the care and
rehabilitation of stroke patients; therefore enhancing their
psychological wellbeing and identifying ways to address
unmet needs is essential to the wellbeing of both stroke
survivors and their family members.
Acknowledgments
The authors would like to thank all participants for their time and
participation.
Funding
This work was supported by the Health Research Board [SPHeRE2013/1,
1404/7400, and RL-15-1579 [to KB]], and the Irish Heart Foundation
[1296829].
Data availability
The data that support the findings of this study are available on request
from the corresponding author, DR. The data are not publicly available
as they contain potentially identifiable information about research
participants.
ORCID
Daniela Rohde http://orcid.org/0000-0001-8834-2539
References
1. Dankner R, Bachner YG, Ginsberg G, et al. Correlates of well-being
among caregivers of long-term community-dwelling stroke
survivors. Int J Rehabil Res. 2016;39(4):326–330. doi:10.1097/
mrr.0000000000000192
2. Mellon L, Brewer L, Hall P, et al. Cognitive impairment six months
after ischaemic stroke: a profile from the ASPIRE-S study. BMC
Neurol. 2015;15(1). doi:10.1186/s12883-015-0288-2
3. Pesantes MA, Brandt LR, Ipince A, et al. An exploration into caring
for a stroke-survivor in Lima, Peru: emotional impact, stress fac-
tors, coping mechanisms and unmet needs of informal caregivers.
eNeurologicalSci. 2017;6:33–50. doi:10.1016/j.ensci.2016.11.004
4. Woodford J, Farrand P, Watkins ER, et al. “I don’t believe in
leading a life of my own, I lead his life”: a qualitative investigation
of difficulties experienced by informal caregivers of stroke survi-
vors experiencing depressive and anxious symptoms. Clin Gerontol.
2017;1–15. doi:10.1080/07317115.2017.1363104
5. Wagachchige Muthucumarana M, Samarasinghe K, Elgan C.
Caring for stroke survivors: experiences of family caregivers in

Sri Lanka - a qualitative study. Top Stroke Rehabil. 2018;1–6.
doi:10.1080/10749357.2018.1481353
6. Malhotra R, Chei CL, Menon EB, et al. Trajectories of positive
aspects of caregiving among family caregivers of
stroke-survivors: the differential impact of stroke-survivor
disability. Top Stroke Rehabil. 2018;25(4):261–268. doi:10.1080/
10749357.2018.1455369
7. Em S, Bozkurt M, Caglayan M, et al. Psychological health of
caregivers and association with functional status of stroke
patients. Top Stroke Rehabil. 2017;24(5):323–329. doi:10.1080/
10749357.2017.1280901
8. Atteih S, Mellon L, Hall P, et al. Implications of stroke for caregiver
outcomes: findings from the ASPIRE-S study. Int J Stroke. 2015;10
(6):918–923. doi:10.1111/ijs.12535
9. McElwaine P, McCormack J, Harbison J, et al. National Stroke
Audit 2015. Dublin, Ireland: Irish Heart Foundation and HSE;
2015.
10. Graf R, LeLaurin J, Schmitzberger M, et al. The stroke caregiving
trajectory in relation to caregiver depressive symptoms, burden,
and intervention outcomes. Top Stroke Rehabil. 2017;1–8.
doi:10.1080/10749357.2017.1338371
11. Bakas T, Clark PC, Kelly-Hayes M, et al. Evidence for stroke family
caregiver and dyad interventions: a statement for healthcare pro-
fessionals from the American Heart Association and American
Stroke Association. Stroke. 2014;45(9):2836–2852. doi:10.1161/
str.0000000000000033
12. Pucciarelli G, Ausili D, Galbussera AA. et al. Quality of life,
anxiety, depression and burden among stroke caregivers:
a longitudinal, observational multicentre study. J Adv Nurs.
2018;74:1875–1887. doi:10.1111/jan.13695
13. Pucciarelli G, Vellone E, Savini S, et al. Roles of changing physical
function and caregiver burden on quality of life in stroke:
a longitudinal dyadic analysis. Stroke. 2017;48(3):733–739.
doi:10.1161/strokeaha.116.014989
14. Berg A, Palomaki H, Lonnqvist J, et al. Depression among care-
givers of stroke survivors. Stroke. 2005;36(3):639–643. doi:10.1161/
01.STR.0000155690.04697.c0
15. Tang EY, Amiesimaka O, Harrison SL, et al. Longitudinal effect of
stroke on cognition: a systematic review. J Am Heart Assoc. 2018. 7
(2). doi:10.1161/jaha.117.006443
16. Perrin PB, Heesacker M, Stidham BS, et al. Structural equation
modeling of the relationship between caregiver psychosocial vari-
ables and functioning of individuals with stroke. Rehabil Psychol.
2008;53(1):54–62. doi:10.1037/0090-5550.53.1.54
17. Brewer L, Mellon L, Hall P, et al. Secondary prevention after
ischaemic stroke: the ASPIRE-S study. BMC Neurol. 2015;15:216.
doi:10.1186/s12883-015-0466-2
18. Vandenbroucke JP, von Elm E, Altman DG, et al. Strengthening
the Reporting of Observational Studies in Epidemiology
(STROBE): explanation and elaboration. PLoS Med. 2007;4(10):
e297. doi:10.1371/journal.pmed.0040297
19. Rohde D, Williams D, Gaynor E, et al. Secondary prevention and
cognitive function after stroke: a study protocol for a 5-year
follow-up of the ASPIRE-S cohort. BMJ Open. 2017;7(3):e014819.
doi:10.1136/bmjopen-2016-014819
20. Gaynor E, Rohde D, Large M, et al. Cognitive impairment, vulner-
ability, and mortality post ischemic stroke: a five-year follow-up of
the Action on Secondary Prevention Interventions and
Rehabilitation in Stroke (ASPIRE-S) Cohort. J Stroke
Cerebrovascular Dis. 2018;27(9):2466–2473. doi:10.1016/j.
jstrokecerebrovasdis.2018.05.002
21. Jorm AF, Jacomb PA. The Informant Questionnaire on Cognitive
Decline in the Elderly (IQCODE): socio-demographic correlates,
TOPICS IN STROKE REHABILITATION 7
reliability, validity and some norms. Psychol Med.
1989;19:1015–1022.
22. Jorm AF. The Informant Questionnaire on cognitive decline in the
elderly (IQCODE): a review. Int Psychogeriatr. 2004;16:275–293.
23. McGovern A, Pendlebury ST, Mishra NK, et al. Test accuracy of
informant-based cognitive screening tests for diagnosis of dementia
and multidomain cognitive impairment in stroke. Stroke. 2016;47
(2):329–335. doi:10.1161/strokeaha.115.011218
24. Serrano S, Domingo J, Rodriguez-Garcia E, et al. Frequency of
cognitive impairment without dementia in patients with stroke: a
two-year follow-up study. Stroke. 2007;38(1):105–110. doi:10.1161/
01.STR.0000251804.13102.c0
25. Quinn TJ, Fearon P, Noel-Storr AH, et al. Informant Questionnaire
on Cognitive Decline in the Elderly (IQCODE) for the diagnosis of
dementia within community dwelling populations. Cochrane
Database Syst Rev. 2014;(4):Cd010079. doi:10.1002/14651858.
CD010079.pub2
26. Srikanth V, Thrift AG, Fryer JL, et al. The validity of brief screen-
ing cognitive instruments in the diagnosis of cognitive impairment
and dementia after first-ever stroke. Int Psychogeriatr. 2006;18
(2):295–305. doi:10.1017/s1041610205002711
27. Louis B, Harwood D, Hope T, et al. Can an informant question-
naire be used to predict the development of dementia in medical
inpatients? Int J Geriatr Psychiatry. 1999;14(11):941–945.
28. Tang WK, Chan SS, Chiu HF, et al. Can IQCODE detect poststroke
dementia? Int J Geriatr Psychiatry. 2003;18(8):706–710.
doi:10.1002/gps.908
29. Nasreddine ZS, Phillips NA, Bedirian V, et al. The Montreal
Cognitive Assessment, MoCA: a brief screening tool for mild
cognitive impairment. J Am Geriatr Soc. 2005;53(4):695–699.
doi:10.1111/j.1532-5415.2005.53221.x
30. Coen RF, Cahill R, Lawlor BA. Things to watch out for when using
the Montreal cognitive assessment (MoCA). Int J Geriatr
Psychiatry. 2011;26(1):107–108. doi:10.1002/gps.2471.
31. Rohde D, Hickey A, Williams D, et al. Cognitive impairment and
cardiovascular medication use: results from wave 1 of The Irish
Longitudinal Study on Ageing. Cardiovasc Ther. 2017;35(6):e12300.
doi:10.1111/1755-5922.12300
32. Tan HH, Xu J, Teoh HL, et al. Decline in changing Montreal
Cognitive Assessment (MoCA) scores is associated with
post-stroke cognitive decline determined by a formal neuropsycho-
logical evaluation. PLoS One. 2017;12(3):e0173291. doi:10.1371/
journal.pone.0173291
33. Zigmond AS, Snaith RP. The hospital anxiety and depression scale.
Acta Psychiatr Scand. 1983;67:361–370.
34. Radloff LS. The CES-D scale: a self-report depression scale for
research in the general population. Appl Psychol Meas. 1977;1
(3):385–401. doi:10.1177/014662167700100306
35. Caro CC, Mendes PV, Costa JD, et al. Independence and cognition
post-stroke and its relationship to burden and quality of life of
family caregivers. Top Stroke Rehabil. 2017;24(3):194–199.
doi:10.1080/10749357.2016.1234224
36. Del-Ser T, Morales JM, Barquero MS, et al. Application of
a Spanish version of the “Informant Questionnaire on Cognitive
Decline in the Elderly” in the clinical assessment of dementia.
Alzheimer Dis Assoc Disord. 1997;11(1):3–8.
37. Nygaard HA, Naik M, Geitung JT. The Informant Questionnaire
on Cognitive Decline in the Elderly (IQCODE) is associated with
informant stress. Int J Geriatr Psychiatry. 2009;24(11):1185–1191.
doi:10.1002/gps.2243.
38. Greenwood N, Mackenzie A, Cloud GC, et al. Informal carers of
stroke survivors–factors influencing carers: a systematic review of
quantitative studies. Disabil Rehabil. 2008;30(18):1329–1349.