Original Article

Journal of Geriatric Psychiatry

and Neurology
Multidimensional Care Burden in 1-10
ª The Author(s) 2018
Article reuse guidelines:
Parkinson-Related Dementia sagepub.com/journals-permissions
DOI: 10.1177/0891988718802104
journals.sagepub.com/home/jgp

Sabina Vatter, MA1,2 , Kathryn R. McDonald, PhD1,

Emma Stanmore, PhD3, Linda Clare, PhD4, and Iracema Leroi, MD1,2

Abstract
Background and Objective: Providing care to people with Parkinson-related dementia (PwPRD) may result in significant
stress, strain, and burden for life partners. A common measurement of life partner burden is the Zarit Burden Interview (ZBI),
which considers “burden” as a unitary concept; however, burden is highly complex and most likely comprises several dimensions.
This study aimed to explore the factor structure of the ZBI in life partners of PwPRD and to examine the relationships among the
emerging factors and the demographic and clinical features. Methods: Life partners of PwPRD participated in home-based
quantitative assessments and self-completed postal questionnaires. The assessment battery included ZBI, measures of relation-
ship satisfaction, mood, stress, resilience, health, quality of life, feelings related to care provision, and sociodemographic questions.
Data on PwPRDs’ motor and neuropsychiatric symptom severity were also elicited in home-based assessments. Results: An
exploratory factor analysis (principal axis factoring) of ZBI, conducted with 127 life partners, revealed five burden dimensions:
social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These
burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety,
depression, resentment, negative strain, and PwPRD motor severity. In multiple linear regression analyses, where each factor
score was the dependent variable, stress, negative strain, and resentment emerged as significant predictors of specific burden
dimensions. Conclusions: Burden is a complex and multidimensional construct. Interventions should address specific types of
burden among life partners of PwPRD to support couples’ relationships and maintain quality of life.

Keywords
Parkinson disease dementia, Lewy body dementia, caregiver burden, factor analysis, Zarit Burden Interview

Introduction The term, however, remains common in literature and will

Care provision in Parkinson disease (PD) involves providing
help with multiple aspects of the disease, including motor,
cognitive, and psychiatric symptoms, as well as providing
oversight of complex treatment regimens. The demands of the
caring role for life partners may result in stress, strain, and
burden1-7; increased anxiety and depression5,8; reduced life
satisfaction9; lower quality of life5,10,11; and higher rates of
mortality.12 Caregiver burden, defined as “the extent to which
caregivers perceive their emotional or physical health, social
life, and financial status as suffering as a result of caring for
their relative” (p. 261),13 is one of the most common constructs
related to care provision. Evidence suggests that burden
increases with the emergence of cognitive impairment and
dementia in PD4,11,14 and is higher among life partners of
people with Parkinson disease dementia (PDD) in comparison
to people with Alzheimer disease.15 Use of the term “burden”
is becoming less popular, as the provision of care for a loved
one may not be experienced as a burden and strain but as a
marital contract, commitment, and moral responsibility.16
be used throughout the article for consistency with earlier
research.
1
Faculty of Biology, Medicine and Health, Division of Neuroscience and
Experimental Psychology, School of Biological Sciences, Manchester
Academic Health Science Centre, University of Manchester, Manchester,
United Kingdom
2
Greater Manchester Mental Health NHS Foundation Trust, Manchester,
United Kingdom
3
Faculty of Biology, Medicine and Health, Division of Nursing, Midwifery and
Social Work, School of Health Sciences, Manchester Academic Health Science
Centre, University of Manchester, Manchester, United Kingdom
4
Centre for Research in Ageing and Cognitive Health, University of Exeter,
Exeter, United Kingdom
Corresponding Author:
Iracema Leroi, Division of Neuroscience and Experimental Psychology,
University of Manchester, Jean McFarlane Building, Oxford Road, Manchester
M13 9PL, United Kingdom.
Email: iracema.leroi@manchester.ac.uk
2 Journal of Geriatric Psychiatry and Neurology XX(X)
Burden among life partners of people with PD is typically
assessed2 using the Zarit Burden Interview (ZBI).17 The ZBI,
a 22-item scale, assesses life partners’ physical, emotional, and
socioeconomic status in regard to care provision17 and is
deemed a reliable and valid scale with good psychometric
properties.18 Despite the fact that the ZBI commonly examines
“burden” as a unidimensional construct, studies have suggested
that burden is multifactorial with “personal strain” and “role
strain” as common factors.19-21 In conditions other than PD or
Parkinson-related dementia (PRD), researchers have confirmed
the multidimensionality of the ZBI with solutions of 2-,20
3-,22-28 4-,29-31 5-,32-34 and 6-factor35 models. Frequently, the
3-factor solutions have been named as follows: (1) impact on
caregiver’s personal and social life; (2) feelings of frustration,
embarrassment, and/or anger; and (3) guilt or self-criti-
cism.22,25,27,28 The variance in the factor solutions suggests that
culture36 and disease type21 play a crucial role in life partners’
burden. Importantly, for PRD, the dimensions of care burden
are less well understood. Evidence has shown that transitioning
from PD to mild cognitive impairment (PD-MCI) and dementia
(PDD) is accompanied by a significant decline in function,
complexity of symptoms, and marked increase in negative
impact and strain on life partner4,6,11,37; therefore, aspects of
specific burden types should be explored.
The dimensionality of a scale can be examined using
exploratory factor analysis (EFA) which groups meaningful
variables together into distinct factors.38 The aim of an EFA
is to simplify and capture meaningful patterns in the data,
reduce the data into smaller sets of constructs, and describe the
features of the emerging factors.38 Earlier EFA studies of the
ZBI have been conducted with care partners of people with
memory impairment,29 dementia,22,27,28,30 and dementia with
Lewy bodies (DLB)23 among French,22 American,23,28 Chi-
nese,29,30,34 and British27 care partners; however, the factor
structure of the ZBI in life partners of people with PRD remains
unknown. Thus, our aim was to explore the dimensionality of
the ZBI17 in a UK sample of spouses and life partners of people
with PD-MCI, PDD, and DLB by conducting an EFA and to
investigate possible relationships among the emerging factors
and the demographic and clinical features. We hypothesized
that a 3-factor solution would emerge according to similar
research conducted with life partners of people with
dementia.22,23,27,28
Methods
Ethical Approval
This cross-sectional study was part of a larger pilot feasibility
study individualised cognitive stimulation therapy (INVEST) of
adapted cognitive stimulation therapy for people with PRD and
their companions,39 which had been approved by the local
research ethics committee (reference number: 15/YH/0531).
An additional UK-wide postal questionnaire study, for which
full ethical approval was received via substantial amendment
to the INVEST study, was also undertaken. All eligible
participants had capacity to agree to participate in the study and
signed written informed consent.
Participant Eligibility, Recruitment, and Procedure
Participants were eligible to take part if they were a partner or a
spouse of a person diagnosed with PD-MCI, PDD, or DLB (as
per standard clinical diagnostic criteria)40-42 and if they lived
together. Life partners of all 3 conditions were invited to par-
ticipate, as these are all manifestations of the Lewy body dis-
ease spectrum with shared underlying pathology and all
manifest cognitive and neuropsychiatric symptoms. Partici-
pants who were not in a cohabiting or in a marital relationship
with a person with PRD, whose partner had passed away, or
who lacked capacity to consent were ineligible for the current
study. High scores on the burden and mental health scales were
not considered to be an exclusion, as this ensured heterogeneity
in the sample. Participation of people with PRD was not
required in this study; however, participants who took part in
the postal questionnaire study provided information about their
partners with PRD. Cognitive status of people with PRD was
verified with the Montreal Cognitive Assessment43 in the
home-based assessment visits, and the cognitive diagnosis was
self-reported by life partners in the postal questionnaire survey.
A sample size criterion of participant-to-item ratio of 5:144-46
was applied, and the occurrence of missing data in 10% cases
was predicted, thus requiring a minimum sample size of 121
participants for conducting an EFA on the 22-item ZBI.
The data of spouses and life partners of people with PRD
were collected in 2 ways: (1) baseline assessments in the
INVEST study conducted in an interview between the
researcher and the couple, and (2) a postal questionnaire for
life partners only. Dyad participants for the INVEST study
were identified through memory or movement disorder clinics
in 4 locations across England (Greater Manchester, Derbyshire,
North East London, and Warrington) and through UK-based
charity and research websites (eg, Parkinson’s UK, Join
Dementia Research, Lewy Body Society). From the 76 compa-
nion–participant dyads recruited to the INVEST study, 57 life
partners were eligible for the current study, as they were life
partners of people with PRD, and their data were extracted.
The additional subsample of life partners recruited via the
postal questionnaire, which ran from July 2017 to January
2018, comprised participants identified through the following
routes: (1) those on the “screen-failed” list of the INVEST
study, (2) patient databases held by Greater Manchester Mental
Health and Social Care National Health Service (NHS) trust
and North West Boroughs Healthcare NHS Trust, and (3)
advertisements on the Parkinson’s UK, Lewy Body Society,
and Join Dementia Research websites. The reasons for nonpar-
ticipation in the INVEST study included ineligibility, distance,
lack of interest in participating, and high presence of burden in
the life partner. A postal questionnaire pack, containing an
invitation letter, a participant information sheet, a consent
form, a survey and a prepaid envelope with the researcher’s
(S.V.) postal address, was sent to potential participants who
Vatter et al
decided whether to take part or not. In total, 79 life partners, in
addition to the 57 recruited via the INVEST study, participated
in the postal questionnaire study.
Measures
The ZBI17 is a 22-item self-report measure that assesses life
partners’ degree of burden on a 5-point Likert-type scale (0 ¼
never to 4 ¼ nearly always), where a maximum total score of
88 indicates the highest level of burden. Zarit Burden Interview
has good internal reliability (Cronbach a > .90).27,28
The Relationship Satisfaction Scale (RSS)47 is a 7-item self-
report measure that explores relationship satisfaction with a
partner with regard to communication and openness, conflict
resolution, degree of affection/caring, intimacy/closeness, and
overall satisfaction with the relationship. It uses a 7-point
Likert-type scale varying from 0 (very dissatisfied) to 6 (very
satisfied). The total score is a summation of all items, and
higher scores indicate higher satisfaction with the relationship.
The Relatives’ Stress Scale (Rel.SS)48 evaluates the amount
of stress and upset experienced by the life partner as a result of
providing care. The scale consists of 15 items on a 5-point scale
from 0 to 4, which are summed, and higher scores reflect a
greater level of stress.
The Dyadic Relationship Scale (DRS)49 is an 11-item scale with
2 subscales measuring positive interaction and negative strain of
the dyadic relationship. It is scored with a 4-point Likert-type scale
ranging from 0 to 3. The items within each subscale are summed,
and higher scores indicate greater perceived strain and greater
positive interaction with the person being cared for.
The Family Caregiving Role scale (FCR)50 consists of 16
items on a 5-point scale from 1 to 5, which are divided into 3
subscales: (1) satisfaction with the caring role, (2) resentment,
and (3) anger. A mean score for the items within each subscale is
calculated, and higher scores indicate higher satisfaction with the
caring role and greater feelings of resentment and anger.
The Short-Form 12 Health Survey (SF-12)51 evaluates life
partners’ physical and mental health in 12 yes/no or Likert-
scale questions. The scores are calculated separately for
physical and mental health, and higher scores indicate better
physical and mental well-being.
The Hospital Anxiety and Depression Scale (HADS)52 is a
14-item scale divided into anxiety and depression subscales;
each item is measured on a 4-point Likert-type scale from 0 to
3. Items are summed, and higher scores indicate higher anxiety
and depression scores.
The EuroQoL-5D-3L (EQ-5D)53 comprises 5 questions measur-
ing mobility, self-care, usual activities, pain/discomfort, and anxiety/
depression. This produces an index score describing health-related
quality of life in which lower scores indicate lower health-related
quality of life. The EQ-5D also includes a visual analogue scale
(VAS) where participants rate their “best health today” between
0% and 100%; higher scores indicate better health status.
The Brief Resilience Scale (BRS)54 assesses the ability to
bounce back from stress with 6 items on a 5-point Likert-type
scale ranging from 1 to 5. Higher scores indicate higher resilience.
3
Additional assessments of motor and neuropsychiatric
symptoms of people with PRD were elicited through home-
based assessments, which were conducted by INVEST study
researchers between April 2016 and July 2017. Severity of
partners’ Parkinson disease was measured with Hoehn and
Yahr (H&Y)55 stage ranging between stages I and V. The Neu-
ropsychiatric Inventory (NPI)56 evaluates the frequency and
severity of 12 neuropsychiatric symptoms which were rated
by life partners. For both scales, higher scores indicate an
advanced disease stage and more frequent and severe neurop-
sychiatric symptoms.
Demographic information such as age, gender, education,
ethnicity, marital status, relationship duration, and living status
of both partners and partners’ diagnosis, the onset year of PD or
DLB symptoms and cognitive impairment, and care provision
duration in years and weekly hours by life partners was
obtained through the questionnaires.
Statistical Analysis
Descriptive and inferential statistical analyses were performed
with SPSS version 23. An EFA of the 21-item ZBI was under-
taken using principal axis factoring with varimax rotation.
Tests of assumption were carried out prior to conducting the
EFA and were met. Item number 22, which evaluates burden
globally, was removed from the EFA due to its high correlation
with the other items on the scale.34 Pearson correlations were
used to explore the relationships among the factors that
emerged and all outcomes. Variables with strong correlations
were then entered into multiple linear regression models using
each factor score as the dependent variable. Linear regression
assumptions (linearity, independence and distribution of resi-
duals, lack of multicollinearity, homoscedasticity, outliers)
were examined through statistical tests and visual inspection
of graphs and met. The significance level for results was set at
P < .01 due to the number of variables.
Results
A total of 136 life partners took part in the study. All couples
lived together, and most (94.9%) were married (mean relation-
ship duration 42.33 + 14.10 years; Table 1). Life partners were
predominantly women (85.3%) and white British (89.7%), with
a mean age of 69.44 years (standard deviation [SD] ¼ 7.62). On
average, participants had provided care for 5.51 (SD ¼ 4.73)
years and were currently providing care for 95.66 (SD ¼ 62.91)
hours a week. The mean age of people with PRD was 73.51
years (SD ¼ 6.48). Of these, 37 had a diagnosis of PD-MCI, 50
of PDD, and 49 of DLB. The average disease duration of PD
(includes DLB diagnosis in the absence of PD diagnosis) and
cognitive impairment was 7.14 years (SD ¼ 6.52) and 4.59
years (SD ¼ 3.86), respectively. The severity of PD as deter-
mined by H&Y staging in the subsample of people with PRD
was 9 (16.4%) at stage 1, 28 (50.9%) at stage 2, 6 (10.9%) at
stage 3, 10 (18.2%) at stage 4, and 2 (3.6%) at stage 5.
4 Journal of Geriatric Psychiatry and Neurology XX(X)

Table 1. Participant Characteristics (N ¼ 136 Life Partners). 5, which coincided with the findings from earlier
research.24,26,29-32 The internal reliability of each factor was
People With
Characteristics Life Partners PRD
good (Cronbach a between .773 and .845). Item 7 had a factor
loading below 0.4058,59 and was excluded from the model.
Gender, female, n (%) 116 (85.3) 20 (14.7) The first factor “Social and psychological constraints”
Age, mean years (SD) 69.44 (7.62) 73.51 (6.48) described the change in life partners’ relationship with their
Ethnicity, white British n (%) 122 (89.7) 123 (90.4) friends as a result of care provision and the associated feelings
Relationship status, n (%)
(eg, embarrassment, anger, and strain). The second factor
Married 129 (94.9)
Cohabiting 7 (5.1) “Personal strain” represented the impact of providing care on
Relationship duration, mean years (SD) 42.33 (14.10) the life partner (eg, health problems and lack of privacy). The
Living status, n (%) third factor “Interference with personal life” illustrated the
With spouse/partner 134 (98.5) limitations to the life partners’ life that had resulted from care
With spouse/partner þ other family 2 (1.5) provision (eg, lack of time for self, limited social participation).
Education, n (%) The fourth factor “Concerns about future” depicted fear and
School leaver at the age of 14-16 41 (30.1) 54 (39.7)
uncertainty in regard to care provision (eg, inability to provide
School leaver at the age of 17-18 11 (8.1) 6 (4.4)
Further education 34 (25.0) 36 (26.5) care, getting rid of the caring responsibility). The fifth factor
Higher education (university degree) 50 (36.8) 40 (29.4) “Guilt” reported the life partners’ self-critical perception of
Age left education, mean years (SD) 18.28 (4.78) 18.32 (5.19) their role (eg, doing more, doing a better job in caring). All 5
Diagnosis, n (%) factors correlated with the total ZBI score and with each other,
PD-MCI 37 (27.2) but factor 5 had the lowest correlation coefficients with the
PDD 50 (36.8) ZBI scale and other factors. The strongest correlations among
DLB 49 (36.0)
factors were found between factors 1 and 2 (r ¼ 0.67), factors 2
Duration of PD or DLB, mean 7.14 (6.52)
years (SD) and 3 (r ¼ .67), factors 1 and 3 (r ¼ .64), and factors 3 and
Duration of MCI or dementia, mean 4.59 (3.86) 4 (r ¼ .62).
years (SD) All 5-factor scores negatively correlated with life partners’
Care duration, mean years (SD) 5.51 (4.73) relationship satisfaction (RSS), mental health score (SF-12),
Care hours per week, mean (SD) 95.66 (62.91) and resilience (BRS) and positively correlated with stress
Abbreviations: DLB, dementia with Lewy bodies; MCI, mild cognitive
(Rel.SS), anxiety and depression (HADS), resentment (FCR
impairment; PD, Parkinson disease; PDD, Parkinson disease dementia; PD- subscale), negative dyadic strain (DRS subscale), and person
MCI, Parkinson disease and mild cognitive impairment; PRD, Parkinson-related with PRD’s H&Y scores (Table 3). Additionally, higher scores
dementia; SD, standard deviation. on factors 1, 2, and 3, which collectively represent psycholo-
gical burden and impact on life partners’ personal and social
life, were associated with higher scores on the NPI and higher
The ZBI mean score was 35.51 (SD ¼ 15.40), median 35.00, participant distress related to the person with PRD’s neuropsy-
and range 2 to 74. The mean scores and SDs of individual items chiatric symptoms. Lower scores for health-related quality of
are provided in Table 2. The items were normally distributed life (EuroQoL) were associated with factors 2 and 4, the former
and the internal consistency reliability of the ZBI scale was factor representing current health state and the latter portraying
excellent (Cronbach a ¼ 0.92). Missing items on the ZBI concerns about life partners’ future health and well-being with
occurred in 9 participants and their data were excluded listwise. regard to their ability to provide care. The longer duration of
Overall, 20 (15.7%) life partners experienced little burden or no cognitive impairment correlated most strongly with factors
burden, 58 (45.7%) had mild to moderate burden, 39 (30.7%) 2 (personal strain) and 3 (interference with personal life). Factors
had moderate to severe burden, and 10 (7.9%) had severe bur- 1 and 4 were inversely correlated with positive dyadic interac-
den.57 A significant effect of partner’s disease type (PD-MCI, tion (DRS subscale) and factor 1 with the caring role satisfaction
PDD, and DLB) was found on the ZBI scores in a 1-way (FCR subscale). Lower life partners’ age and shorter relationship
analysis of variance (F2,124 ¼ 5.79; P ¼ .004) showing that duration only correlated with factor 2, and longer weekly care
burden was significantly lower in PD-MCI (mean ¼ 29.15, SD provision hours only correlated with factor 3.
¼ 15.19) than in PDD (mean ¼ 40.84, SD ¼ 14.23) and DLB Five multiple linear regression analyses were conducted
(mean ¼ 38.50, SD ¼ 17.35). with each factor as the dependent variable. A significant regres-
The data satisfied the assumptions of the Kaiser-Meyer- sion equation was found to predict factor 1 “social and psycho-
Olkin measure of sampling adequacy (0.882) and Bartlett test logical constraints” (F7,105 ¼ 29.065, P < .001, adjusted R2 ¼
of sphericity (w2 ¼ 1340.248, df ¼ 210; P < .0001), showing 0.637), factor 2 “personal strain” (F7,108 ¼ 35.310, P < .001,
that the sample and collected data were suitable for structure adjusted R2 ¼ 0.676), and factor 3 “interference with personal
detection. Principal axis factoring with varimax rotation life” (F7,106 ¼ 32.750, P < .001, adjusted R2 ¼ 0.663) but not
revealed a 5-factor solution with eigenvalues >1 that accounted factors 4 “concerns about future” and 5 “guilt.” Stress (Rel.SS)
for 65.61% of the total variance (Table 2). All factors were was a significant predictor for factor 1 (b ¼ .32, t ¼ 2.92, df ¼
retained despite the fact that only 2 items loaded onto factor 105; P < .01), factor 2 (b ¼ .36, t ¼ 3.49, df ¼ 108; P < .01),
Vatter et al 5

Table 2. Item Descriptive Statistics and Standardized Factor Loadings of the Zarit Burden Interview (Principal Axis Factoring, Varimax
Rotation).a

Factors (Number of Items)

ZBI Items Mean (SD) 1 (6) 2 (4) 3 (5) 4 (3) 5 (2)

Eigenvalue N/A 8.26 1.72 1.45 1.22 1.13

% of variance N/A 39.33 8.18 6.93 5.80 5.37
Internal consistency (Cronbach a) N/A 0.81 0.77 0.85 0.82 0.79
13. Do you feel uncomfortable having your friends over because of your relative? 0.87 (1.16) 0.664
4. Do you feel embarrassed about your relative’s behavior? 0.98 (0.96) 0.607
6. Do you feel that your relative currently affects your relationship with other family 1.01 (1.10) 0.578 0.408
members?
9. Do you feel strained when you are around your relative? 1.58 (0.10) 0.542 0.428
1. Do you feel that your relative asks for more help than he or she needs? 1.35 (1.04) 0.477
5. Do you feel angry when you are around your relative? 1.22 (0.92) 0.471
15. Do you feel that you don’t have enough money to care for your relative, in addition to 1.14 (1.30) 0.596
the rest of your expenses?
3. Do you feel stressed between caring for your relative and trying to meet other 1.95 (1.17) 0.591
responsibilities for your family or work?
10. Do you feel that your health has suffered because you are caring for your relative? 1.31 (1.17) 0.461 0.578
11. Do you feel that you don’t have as much privacy as you would like, because of your 1.32 (1.27) 0.477
relative?
2. Do you feel that, because of the time you spend with your relative, you don’t have enough 2.30 (1.21) 0.691
time for yourself?
8. Do you feel that your relative is dependent upon you? 3.56 (0.80) 0.657
12. Do you feel that your social life has suffered because you are caring for your relative? 2.28 (1.23) 0.578
17. Do you feel that you have lost control of your life since your relative’s illness? 1.81 (1.29) 0.446 0.512
14. Do you feel that your relative seems to expect you to take care of him or her, as if you 2.34 (1.37) 0.442
were the only one he or she could depend on?
16. Do you feel that you will be unable to take care of your relative much longer? 0.94 (1.02) 0.845
19. Do you feel uncertain about what to do about your relative? 1.26 (1.06) 0.614
18. Do you wish that you could just leave the care of your relative to someone else? 0.94 (1.11) 0.580
20. Do you feel that you should be doing more for your relative? 1.28 (1.16) 0.900
21. Do you feel that you could do a better job in caring for your relative? 1.37 (1.13) 0.715
7. Are you afraid about what the future holds for your relative? 2.77 (1.05) – – – – –
22. Overall, how burdened do you feel in caring for your relative?b 1.91 (1.31)
Abbreviations: SD, standard deviation; ZBI, Zarit Burden Interview
a
Bold type indicates factor to which items are allocated. – item removed due to poor loading; Factor 1 – “Social and psychological constraints”; Factor 2 –
“Personal strain”; Factor 3 – “Interference with personal life”; Factor 4 – “Concerns about future”, Factor 5 – “Guilt.” Loadings  0.400, N ¼ 127.
b
Item not included in the factor analysis.

and factor 3 (b ¼ .51, t ¼ 4.81, df ¼ 106; P < .001). In addition,
factor 1 was predicted by negative strain (DRS subscale; b ¼
.34, t ¼ 3.75, df ¼ 105; P < .001) and factor 3 by resentment
(FCR subscale; b ¼ .33, t ¼ 3.47, df ¼ 106; P < .01).
Discussion
To our knowledge, this is the first EFA of the ZBI undertaken
with life partners of people with PRD. Our findings have sig-
nificantly extended previous work on the understanding of the
multidimensional nature of care burden in partners of people
living with complex disease. Notably, we have shown that life
partners of people with PRD experience burden differently than
life partners of other types of dementia, with relationship dis-
satisfaction, stress, and negative care-related feelings being key
aspects underpinning burden. Contrary to our initial hypoth-
esis, a 5-factor model emerged with 2 new factors, namely,
“interference with personal life” and “concerns about future,”
illustrating the complex and multifaceted nature of care provi-
sion in PRD and its direct impact on life partners.
Participants in this study experienced a similar amount of
burden to care partners of people with non-PD type dementia
and were of similar age.22,27 Furthermore, partners of people
with PDD and DLB experienced greater burden than those
caring for people with PD-MCI, which is consistent with exist-
ing evidence.4,6,11,60 This confirms previous findings that bur-
den is highly prevalent among life partners of people with PD
and PRD due to disease-related aspects (eg, disease duration,
motor impairment, functional dependency, neuropsychiatric
symptoms, and loss of ability to perform daily activi-
ties) 4,6,8,11,37,61 and life partner-related aspects (eg, own
depression, anxiety, stress, relationship satisfaction, health-
related quality of life, and psychological well-being).4,6,8,11,61
Additionally, our study also found that lower resilience and
higher negative strain and feelings of resentment were
6 Journal of Geriatric Psychiatry and Neurology XX(X)

Table 3. Correlations Among Life Partners’ and Persons With PRD Variables and ZBI Factor Scores.

Factors

Characteristics ZBI Total 1 2 3 4 5

Life partner characteristics

Age, years 0.17 0.21 0.28a 0.09 0.04 0.07
Care provision duration, years 0.12 0.02 0.11 0.22 0.09 0.06
Care provision, hours a week 0.19 0.07 0.13 0.35b 0.18 0.12
Relationship duration, years 0.16 0.18 0.29a 0.11 0.07 0.01
RSS total 0.72b 0.63b 0.62b 0.61b 0.55b 0.29a
Rel.SS total 0.88b 0.71b 0.77b 0.79b 0.64b 0.34b
HADS anxiety 0.68b 0.54b 0.68b 0.50b 0.49b 0.32b
HADS depression 0.70b 0.53b 0.69b 0.60b 0.50b 0.23a
SF-12 physical health 0.02 0.05 0.12 0.02 0.06 0.06
SF-12 mental health 0.68b 0.47b 0.63b 0.50b 0.40b 0.29a
EuroQoL index score 0.23 0.10 0.31b 0.15 0.27a 0.05
EuroQoL best health % 0.27a 0.19 0.35b 0.19 0.24a 0.05
FCR satisfaction 0.15 0.27a 0.01 0.06 0.20 0.04
FCR resentment 0.76b 0.62b 0.63b 0.73b 0.58b 0.29a
FCR anger 0.05 0.01 0.10 0.05 0.03 0.02
DRS positive interaction 0.27a 0.27a 0.15 0.15 0.21a 0.14
DRS negative strain 0.72b 0.72b 0.59b 0.58b 0.58b 0.32b
BRS total 0.53b 0.40b 0.50b 0.38b 0.34b 0.31b
Person with PRD characteristics
Age, years 0.14 0.20 0.19 0.05 0.01 0.07
Motor symptom duration, years 0.14 0.18 0.07 0.19 0.02 0.02
Cognitive impairment duration, years 0.25a 0.19 0.27a 0.27a 0.18 0.07
Subsample of people with PRD (n ¼ 57)
NPI total 0.46a 0.39a 0.40a 0.50b 0.16 0.23
NPI caregiver distress 0.46a 0.42a 0.39a 0.48b 0.18 0.29
H&Y stage 0.52b 0.43a 0.42a 0.43a 0.37a 0.45a

Abbreviations: BRS, Brief Resilience Scale; DRS, Dyadic Relationship Scale; FCR, Family Caregiving Role scale; HADS, Hospital Anxiety and Depression Scale; H&Y,
Hoehn and Yahr; NPI, Neuropsychiatric Inventory; PRD, Parkinson-related dementia; Rel.SS, Relatives’ Stress Scale; RSS, Relationship Satisfaction Scale; SF-12,
Short-Form 12 Health Survey, ZBI, Zarit Burden Interview.
a
P < .01.
b
P < .001.

contributors to burden. These findings indicate that both care
recipient and care provider factors increase burden, suggesting
a synergistic effect.
The 5-factor model explained 65.61% of the total variance,
which is higher than in other dementia studies.22,23,27,28,34
Factors 1 “social and psychological constraints,” 2 “personal
strain,” and 5 “guilt” resonate conceptually with factors found
in previous research. 22-32,34 The first and second factors
described the impact of providing care on the life partners’
social and personal lives, as their social relationships and per-
sonal health have suffered as a result of providing care to a
person with PRD, increasing negative feelings. In contrast to
earlier research, the factors of “frustration, embarrassment,
and/or anger”24,25,27,28,33-35 and “loss of control”29-31,34 did not
emerge as separate factors in this study but were captured by
the first factor instead. This may be due to the interrelationship
between wanting to socialize with friends and being unable to
invite friends to visit due to worries about partners’ behavior
and having lack of control over it. The fifth factor portrayed
participants’ perceptions of their role as a life partner and feel-
ing that the care they provided was insufficient. Despite the fact
that factor 5 consisted of only 2 items, it is a common dimen-
sion in earlier studies22,24-26,28,30,34,35 and has also been named
as “worry about caregiving performance,”23,29,31 suggesting
that “guilt” is an independent burden construct among life
partners.
Factors 3 “interference with personal life,” which described
the limitations that caring responsibilities have set on the life
partners’ lives, and 4 “concerns about future,” which depicted
the feelings of fear and uncertainty regarding the ability to
provide care, are relatively unique factors emerging from the
current study. The former factor has only been found in the
Torres et al35 study with care partners of people with obses-
sive–compulsive disorder, and the latter factor has only been
found in Smith and colleagues’27 dementia research. People
with advancing PD and cognitive impairment can become more
dependent on their life partner due to loss of functional abilities
and competency in carrying out activities of daily living which
can have a profound effect on the time and freedom of life
partners.61 As a result, life partners can have less time for
themselves and for interactions with others. Worry and concern
about future (factor 4) among life partners of people with PRD
Vatter et al
has been found qualitatively,62 as spouses expressed concern
what would happen to their husbands if they were unable to
provide care. In this study, the fourth factor was associated
with life partners’ lower health-related quality of life which
directly relates to their ability to provide care; this highlights
the importance of life partner well-being throughout their
partners’ disease trajectory, enabling them to continue caring
for their partner.
Stress was a significant predictor of the first 3 factors, which
can be observed collectively as the psychosocial impact on life
partners’ personal and social life. Stress and burden are
strongly related61 and used interchangeably on occasion.63
Leggett et al23 noted that burden is key in the stress process,
as life partners assess their role and situation as a care provider
subjectively and decide whether to continue in their role or seek
additional help and support. In addition to stress, negative
strain and resentment predicted factors 1 and 3, respectively,
both of which emerged as new findings from this work. On
close inspection, the conceptual similarity between the
“negative strain” and the “resentment” subscales with the first
and third factor could explain this relationship, as these sub-
scales explored feelings of strain, anger, loss of control, visits
from friends, presence/lack of other care providers, and loss of
own time due to care provision. The relatively low number of
predictors could be due to the nature of the measures in this
study which explored negative feelings and aspects of care
provision rather than positive experiences, and Smith et al27
concluded that seeing positive aspects of care provision can be
protective against burden; thus, it is an important construct to
include in future studies.
We acknowledge the limitations of this study. First, the
sample size was somewhat low as a sample size of at least
300 participants,44 with a participant-to-item ratio of 10:1 has
been recommended to conduct a factor analysis.64 Increasing
the number of participants could be beneficial in producing a
stable factor structure and generalizing the findings to a wider
population. Second, to enable the identification and data
extraction of life partners and spouses for the purposes of the
current study, the data of participants who were recruited
through home-based assessments in the wider study
(INVEST)40 were nonanonymous, indicating a nonrandom
sample. However, the variety of recruitment sources was con-
sidered a key strength. Third, the recruitment of participants
through the “screen-failed” list of the INVEST study could
have acted as a possible source of bias (ie, the high burden
experienced by some life partners was known prior to recruit-
ment), but on the other hand, it balanced out the sample since
both eligible and ineligible participants in the INVEST study
could participate in the current study, provided that they met
the eligibility criteria. Fourth, the data on partners’ cognitive,
motor, and neuropsychiatric symptom severity could not be
obtained through the postal questionnaires, which reduced the
sample size for disease-related variables. Fifth, the limitations
of a factor analysis should be recognized as this method can be
subjective, ambiguous, and contradictory due to flexibility in
method and rotation choice, in determining the number of
7
factors and in interpreting the extracted factors.65 Finally, miss-
ing data may have decreased statistical power and increased the
risk of making inaccurate conclusions, but only occurred in less
than 10% of cases.64
In conclusion, the results from this work extend and support
earlier findings of multidimensionality of the ZBI with a
5-factor solution. The range of burden factors reflects the com-
plex nature of PRD and the negative impact on life partners.
The burden dimensions were related to stress, lower mental
health, relationship dissatisfaction, negative care–related feel-
ings, and higher partners’ motor symptom severity. Specific
burden factors were predicted by stress, negative strain, and
resentment. Future research should employ a larger, culturally,
and demographically diverse sample of partners of people with
PD-MCI, PDD, and DLB to facilitate comparisons between
groups and generalizability to a wider population, and apply
a wider range of measures and longitudinal design to under-
stand the causal relationships between the variables. The find-
ings highlight that support interventions targeting specific
types of burden are necessary to address negative emotions and
experiences of care provision and help maintain partners’ well-
being, quality of life, and dyadic relationship.
Authors’ Note
I.L. conceived the INVEST study and received ethical approval. S.V.
was responsible for data collection, statistical analyses, and writing up
the study. All authors were involved in the discussion of the study
design and factor structure, critically revised drafts of the paper, and
approved the final version of the manuscript. Ethical approval for this
study was granted by Yorkshire & The Humber—Bradford Leeds
Research Ethics Committee on 18/01/16, reference number 15/YH/
0531.
Acknowledgments
The authors would like to thank the participants who took part in the
research study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for
the research, authorship, and/or publication of this article: This paper
presents independent research funded by the National Institute for
Health Research (NIHR) under its Research for Patient Benefit (RfPB)
Programme (PB-PG-0613-31058). The views expressed are those of
the authors and not necessarily those of the NHS, the NIHR or the
Department of Health.
ORCID iD
Sabina Vatter, MA http://orcid.org/0000-0001-8512-0121
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