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Available online 29 July 2021
Caregiver burden in relation to cognitive status and dependence on activities of daily living in stroke patients: A cross-sectional study in the Dominican Republic
Sobrecarga del cuidador con relación al estado cognitivo y la dependencia en las actividades de la vida diaria de pacientes con accidente cerebrovascular: un estudio transversal en la República Dominicana
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Víctor Sánchez Silverioa,
Corresponding author
victorss34@hotmail.com

Corresponding author.
, Vanesa Abuín Porrasb, Isabel Rodríguez Costac
a Escuela de Ciencias Aplicadas a la Salud, Pontificia Universidad Católica Madre y Maestra, Santiago de los Caballeros, Dominican Republic
b Departamento de Fisioterapia, Universidad Europea de Madrid, Villaviciosa de Odón, Madrid, Spain
c Departamento de Enfermería y Fisioterapia, Universidad de Alcalá de Henares, Alcalá de Henares, Madrid, Spain
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Tables (2)
Table 1. Characteristics of the study population (n = 28).
Table 2. Correlation of caregiver burden on the Zarit Scale with cognitive status on the MMSE and the MoCA and the dependence in ADL on the Barthel Index (n = 28).
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Abstract
Objective

To determine whether the burden of the family caregiver is related to cognitive status and dependence on the activities of daily living (ADL) of the stroke patient under their care.

Methods

A cross-sectional study was carried out. The Mini Mental State Examination (MMSE), the Montreal Cognitive Assessment (MoCA) and the Barthel index were used to assess, respectively, the patient’s cognitive status and ADL. The Zarit scale was applied to assess the burden on caregivers. A Spearman correlation was used assuming data abnormality on the Zarit scale and considering a significance of P < .05.

Results

28 patients and 28 caregivers were evaluated. The Zarit scale showed correlations with the MMSE (Rho = −.48) and MoCA (Rho = −.43), as well as in the cognitive domains associated with temporo-spatial orientation (Rho = −.45) and reading (Rho = −.45) of the MMSE and language (Rho = −.41), memory (Rho = −.40) and temporo-spatial orientation (Rho = −.46) of the MoCA. On the other hand, the Zarit scale was correlated with the Barthel index (Rho = −.56) and the ADLs relating to dressing and undressing (Rho = −.45), bathing (Rho = −.38) and transferring from the chair to the bed (Rho = −.41).

Conclusions

The caregiver burden was correlated with impaired cognitive status and dependence on ADL in stroke patients.

Keywords:
Stroke
Burden
Caregivers
Cognition
Activities of daily living
Resumen
Objetivo

Determinar si la sobrecarga del cuidador familiar está relacionada con el estado cognitivo y la dependencia en las actividades de la vida diaria (AVD) del paciente con accidente cerebrovascular (ACV) que se encuentra bajo sus cuidados.

Métodos

Se realizó un estudio transversal. El Mini Mental State Examination (MMSE), el Montreal Cognitive Assessment (MoCA) y el índice de Barthel fueron empleados para evaluar respectivamente el estado cognitivo y las AVD en el paciente. La escala de Zarit fue aplicada para valorar la sobrecarga en los cuidadores. Se utilizó una correlación de Spearman asumiendo anormalidad de los datos en la escala de Zarit y contemplando una significancia de P < 0.05.

Resultados

28 pacientes con ACV y 28 cuidadores fueron evaluados. La escala de Zarit mostró correlaciones con el MMSE (Rho = −0,48) y el MoCA (Rho = −0,43), así como en los dominios cognitivos asociados a la orientación temporo-espacial (Rho = −0,45) y la lectura (Rho = −0,45) del MMSE y el lenguaje (Rho = −0,41), la memoria (Rho = −0,40) y la orientación temporo-espacial (Rho = −0,46) del MoCA. Por otro lado, la escala de Zarit estuvo correlacionada con el índice de Barthel (Rho = −0,56) y las AVD relativas a vestirse y desvestirse (Rho = −0,45), bañarse (Rho = −0,38) y transferirse del sillón a la cama (Rho = −0,41).

Conclusiones

La sobrecarga en los cuidadores estuvo correlacionada con el estado cognitivo deteriorado y la dependencia en las AVD de los pacientes con ACV.

Palabras clave:
Accidente cerebrovascular
Sobrecarga
Cuidador
Estado cognitivo
Actividades de la vida diaria
Full Text
Introduction

Stroke is one of the leading causes of disability in the world.1 The patients, as a result of brain damage, usually experience complications such as cognitive deterioration, especially in domains such as attention, memory, language, visuospatial ability and executive functions.2 The patient with stroke can likewise find it difficult to handle activities of daily living (ADL). Some authors have estimated that up to 74% of stroke survivors world-wide require assistance or are totally dependent in ADL.3

In the face of the consequences of stroke, patients may require the care of another person, generally from their setting, who is usually categorised as an informal or family caregiver.4 These experiences of providing care can cause caregivers a problem called caregiver burden. This burden represents a set of physical and emotional problems that are produced in a person as a result of the care given to a relative or friend with chronic illness or disability. Certain studies have shown that, in patients with stroke, up to 54% of the informal caregivers can experience a state of substantial burden.5

In the Dominican Republic, the situation of family caregivers has barely been studied. In the clinical setting, there is generally no priority given to the consequences that the health of family caregivers can suffer as a result of the physical and mental state of the patient with stroke. The cognitive deterioration and dependence in the ADL might constitute problems that make the caregiver’s experience with the patient difficult. Understanding these elements in relation to the burden can be of great relevance for the health professional, given that the caregiver plays an essential role in stroke rehabilitation outside of the clinical context. For this reason, the objective of this study was to establish if the burden of the family caregiver is linked to the cognitive state and dependence in the ADL of the patient with stroke that is under his or her care.

Method

This was a descriptive, cross-sectional study. Using a convenience sampling, patients were recruited in the period of January–September 2018, from 2 rehabilitation centres (Dominican Republic). The patients had to fulfil the following criteria for inclusion: (a) diagnosis of stroke; (b) 20–80 years old; (c) ability to walk with/without technical aid, and (d) able to understand Spanish. The criteria for exclusion were as follows: (a) presence of uncontrolled systemic disease not related to the stroke, (b) visual/auditory alteration, (c) history of peripheral nerve lesions, (d) antecedents of fractures/orthopaedic surgeries, and (e) illiteracy. As for the family caregiver, individuals older than 18 years old that lived in the patient’s residence and that were the main caregivers in the home were included. This study accepted the Declaration of Helsinki and was approved by the Bioethics Committee of the Faculty of Health Sciences, belonging to the Catholic Mother & Teacher University (Pontificia Universidad Católica Madre y Maestra) (ID: COBE-FACS-EXT-001-3-2016-2017).

The variables studied were the burden on the caregiver, sex, age, educational level, stroke chronicity, the side of the body affected by the stroke, cognitive state and dependence in ADL of the patient.

Mini-Mental State Examination

The Mini-Mental State Examination (MMSE) is a cognitive screening test that contains items that assess cognitive domains related to: space-time orientation, registry/memory of words, attention/calculation, memory, naming objects, phrase repetition, understanding orders, reading, writing and visuoconstructional skills. This test, with a cut-off point of <24, ranges from 0 to 30 points (the lower the score, the worse the cognitive state) and has been recommended based on evidence in patients with stroke.6

Montreal Cognitive Assessment

The Montreal Cognitive Assessment (MoCA) is a screening test (available at www.mocatest.org) that assesses the following cognitive skills: visuospatial/executive function, naming animals, memory, attention, language, abstraction and space-time orientation. This test, with a cut-off point of <26 on a range of 0–30 points (lower scores indicate worse cognitive states), has been suggested for evaluating cognitive state in patients with stroke.6

Barthel Index

The Barthel Index was used to assess the ADL. This tool is one of the most used questionnaires for evaluating ADL in patients with stroke. The Barthel Index consists of 10 items that establish dependence in the following ADL: eating, getting dressed/undressed, personal grooming, bathing, stool control, urine control, using the WC, armchair-bed transfer, walking and going up/down stairs. The total score ranges from 0 to 100 points; the lower the score, the greater the dependence in ADL.7

Zarit Scale

Caregiver burden was examined using the Zarit Scale. This questionnaire is widely used with individuals that have populations with some degree of disability (including patients with stroke) under their care. The Zarit Scale consists of 22 questions for the caregiver that are focused on his/her health, psychological wellbeing, economic status, social life and relationship with the patient. Each question has a Likert-type scale, generating a range of 22–110 points; the greater the score, the greater the burden.8

Data gathering

The data gathering procedure was based on a direct survey completed by the patients and their respective caregivers. First, the patient was interviewed, accompanied by his/her caregiver, to gather information about the sociodemographic and clinical variables described earlier. Next, the caregiver’s burden was assessed using the Zarit Scale. As this questionnaire addresses personal aspects about the patient’s care, the patient was moved out of the assessment room to avoid any discomfort on the part of the family member when answering the questions.

Statistical analysis

A descriptive analysis was performed on the patient’s sociodemographic and clinical variables and the family caregiver’s burden. In addition, a Spearman correlation was used among the cognitive state on the MMSE and the MoCA, the dependence in ADL in the Barthel Index and the caregiver burden delivered from the Zarit Scale. This correlation analysis was applied after confirming data abnormality, in the caregiver burden, using a Shapiro-Wilk test. These tests were applied using SPSS version 23, considering statistical significance of P < .05.

ResultsCharacteristics of the study population

A total of 28 patients with stroke and 28 caregivers were included in this study. Table 1 reflects the fact that the majority of the patients were women (57.1%), aged more than 55 years old (57.1%), with a basic educational level (71.4%) and a stroke chronicity of between 0 and 6 months (67.9%). In addition, Table 1 shows the results of the cognitive state on the MMSE (mean = 23.5; standard deviation [SD] = 4.0; confidence interval [CI] 95%: 21.9−25.1) and the MoCA (mean = 16.7; SD = 6.0; CI 95%: 14.3−19.0), as well as the dependence in ADL on the Barthel Index (mean = 73.9; SD = 16.4; CI 95%: 67.5−80.3) and the caregiver burden according to the Zarit Scale (mean = 42.2; SD = 11.5; CI 95%: 37.8−46.7).

Table 1.

Characteristics of the study population (n = 28).

Variable  Mean (SD)  CI 95%  Minimum-maximum 
Sex           
Male  12  42.9       
Female  16  57.1       
Age           
≤55 years old  12  42.9  59.3 (13.2)  54.2−64.5  32−78 
>55 years old  16  57.1       
Educational level           
Basic (1−8 years)  20  71.4       
Medium (9−12 years)  10.7       
Superior (≥13 years)  17.9       
Stroke chronicity           
0−6 months  19  67.9  8.8 (12.3)  4.1−13.6  1−51 
>6 months  32.1       
Side of body affected           
Left  14  50.0       
Right  14  50.0       
MMSE      23.5 (4.0)  21.9−25.1  12−30 
MoCA      16.7 (6.0)  14.3−19.0  5−28 
Barthel Index      73.9 (16.4)  67.5−80.3  15−95 
Zarit Scale      42.2 (11.5)  37.8−46.7  27−74 

%: percent; CI: confidence interval; MMSE: Mini-Mental State Examination; MoCA: Montreal Cognitive Assessment; n: number of cases; SD: standard deviation.

Caregiver burden in relation to cognitive state and ADL

Table 2 shows the caregiver burden shown by the Zarit Scale with respect to the cognitive state assessed using the MMSE and the MoCA, and the dependence in ADL assessed using the Barthel Index. The Zarit Scale presented an inverse correlation with the result of the MMSE (Rho = −.48; P = .008) and the MoCA (Rho = −.43; P = .021); lower scores in the MMSE and the MoCA were correlated with higher scores on the Zarit Scale. This correlation tendency on the Zarit Scale was confirmed with the MMSE domains related to space-time orientation (Rho = −.45; P = .015) and reading (Rho = −.45; P = .014) and the MoCA domains referring to language (Rho = −.41; P = .027), memory (Rho = −.40; P = .031) and space-time orientation (Rho = −.46; P = .013). An inverse correlation between the Zarit Scale and the Barthel Index was confirmed (Rho = −.56; P = .002); lower scores on the Barthel Index were correlated with higher scores on the Zarit Scale. In addition, the Zarit Scale showed inverse correlations in activities such as getting dressed/undressed (Rho = −.45; P = .014), bathing (Rho = −.38; P = .043) and moving from the armchair to the bed (Rho = −.41; P = .029).

Table 2.

Correlation of caregiver burden on the Zarit Scale with cognitive status on the MMSE and the MoCA and the dependence in ADL on the Barthel Index (n = 28).

  Level of caregiver burdena 
Global MMSE  −.48** 
Space-time orientation  −.45* 
Registry of words  −.17 
Attention and calculation  −.24 
Memory  −.06 
Naming  .00 
Repetition  −.19 
Understanding  −.23 
Reading  −.45* 
Writing  −.13 
Drawing  −.05 
Global MoCA  −.43* 
Visuospatial & executive functions  .21 
Naming  −.26 
Attention  −.25 
Language  −.41* 
Abstraction  −.24 
Memory  −.40* 
Space-time orientation  −.46* 
Global Barthel Index  −.56** 
Eating  −.28 
Getting dressed/undressed  −.45* 
Personal grooming  −.13 
Bathing  −.38* 
Stool control  −.21 
Urine control  −.10 
WC use  −.25 
Armchair-bed transfer  −.41* 
Walking  −.23 
Going up/down stairs  −.20 

MMSE: Mini-Mental State Examination; MoCA: Montreal Cognitive Assessment; n: number of cases.

a

Spearman correlation.

*

Correlation significant at the level of P < .05.

**

Correlation significant at the level of P < .01.

Discussion

This study assessed family caregiver burden as related to cognitive state and dependence in ADL in the patient with stroke. The health of family caregivers is a matter of great clinical importance within handling stroke. These caregivers are responsible for complementing patient rehabilitation, as they offer patients help in activities outside of the clinical context.

In our study, the correlation of the Zarit Scale with the MMSE and the MoCA shows that a greater caregiver burden correlates with a more deteriorated cognitive state of the patient with stroke. This tendency in caregiver burden could be seen in the domains related to space-time orientation and language both cognitive tests, and in memory in the MoCA. A caregiver would need to make greater efforts when caring for a patient showing deterioration in the cognitive domains previously mentioned. This can produce a negative experience for the caregiver and, consequently, can create a context that gives rise to increased caregiver burden. A cross-sectional study on this subject assessed 78 family caregivers of patients with 5 years of stroke evolution. In this study, it was demonstrated that the family caregivers of the patients, especially those with cognitive deterioration, exhibited greater symptoms of depression and anxiety.9

Other results of our study indicated correlations between the Zarit Scale and the Barthel Index, which reflect that a greater caregiver burden correlated with greater patient dependence in ADL. This dependence creates the need for the caregiver to expend greater physical effort that, eventually, can increase his/her level of burden. In addition, the Barthel Index ADL that showed correlations with caregiver burden (getting dressed/undressed, bathing and moving from an armchair to the bed) turned out to be the ones in which great mobility is generally required. These results agree with those obtained in a study that revealed correlations between the burden of 65 caregivers and the dependence found in their patients with stroke using the Barthel Index and the Rankin Scale.10 Another study involving 88 caregivers found similar correlations, but added that the likelihood of slight-moderate burden are 3.7 times higher for informal caregivers of patients with moderate-severe disability.11

The findings of our study with reference to caregiver burden are understandable, given that patients with dependence in ADL, or deteriorated cognitive states, may represent a greater challenge for the family caregiver. A factor that might explain these results is the stroke state: the majority of the patients evaluated had stroke chronicity of between 0 and 6 months (67.9%). As a study establishes, due to the functional consequences associated with the stroke, caregiver burden may become clearer during the first 6 months after the stroke.5 It is unfortunately true that, in the Dominican Republic, this issue with the caregivers has barely been studied in the context of stroke. One study in this country described that the burden for caregivers may be worsened by the physical and mental of the patients; however, that study was carried out with 67 family caregivers of patients with Alzheimer disease.12

Clinical staff generally focus on the deficiencies caused in the patient by stroke, leaving the family caregiver in the background. Although it has been suggested that measuring burden could be important for healthcare personnel,13 family caregivers are often ignored during the process of assessment and rehabilitation of patients with stroke. The constant effort that caregivers have to make, without accompaniment from the healthcare centre, can jeopardise their own health until they themselves become patients. As one study suggests, a great part of those caregivers are called «hidden patients», because they frequently do not give their health problems priority given that they dedicate themselves to taking care of the patient.4 Another study with 48 caregivers observed that caregiver quality of life may be affected, regardless of the functional state of the patient with stroke under their care.14

This is surely an issue that needs to be made visible to the healthcare professionals in the Dominican Republic. Some authors have suggested that education and family orientation may play a key role not only in lowering caregiver burden, but also in patient management at home and the stroke rehabilitation process itself.10 It is therefore a good idea to consider the caregivers as a part of the multidisciplinary team, by including them in the process of stroke evaluation and treatment.

One limitation of our study is the reduced number of caregivers that were evaluated. This creates the need to contemplate a wider future sample of caregivers to study in greater depth the correlations brought up in this study. An additional limitation is that, because this is a preliminary study, caregiver characteristics (such as sex, age and hours a day devoted to patient care) were not considered in relation to burden. We recommend including these elements in future studies.

In conclusion, the burden on family caregivers brought correlations to light with the deteriorated cognitive state and dependence in the ADL experienced by patients with stroke under their care. This, especially in the context of the Dominican Republic, opens the possibility of attracting visibility to a caregiver problem that is normally undervalued during the processes of stroke evaluation and rehabilitation. Nevertheless, these preliminary results should be confirmed using larger samples.

Funding

This research has received no funding from public or commercial sector agencies or from non-profit agencies.

Conflict of interests

The authors have no conflicts of interests to declare.

References
[1]
V.L. Feigin.
Anthology of stroke epidemiology in the 20th and 21st centuries: assessing the past, the present, and envisioning the future.
Int J Stroke, 14 (2019), pp. 223-237
[2]
L. Zhao, J.M. Biesbroek, L. Shi, W. Liu, H.J. Kuijf, W.W. Chu, et al.
Strategic infarct location for post-stroke cognitive impairment: a multivariate lesion-symptom mapping study.
J Cereb Blood Flow Metab, 38 (2018), pp. 1299-1311
[3]
L. Pei, X.Y. Zang, Y. Wang, Q.W. Chai, J.Y. Wang, C.Y. Sun, et al.
Factors associated with activities of daily living among the disabled elders with stroke.
Int J Nurs Sci, 3 (2016), pp. 29-34
[4]
C. Feldberg, G. Saux, F. Tartaglini, N.C. Irrazábal, A. Leis, G. Rojas, et al.
Factores psicosociales y sobrecarga del cuidador informal. resultados preliminares en cuidadores familiares de pacientes con enfermedades cerebrovasculares.
Rev Arg Clín Psi, 25 (2016), pp. 259-266
[5]
W. Zhu, Y. Jiang.
A meta-analytic study of predictors for informal caregiver burden in patients with stroke.
J Stroke Cerebrovasc Dis, 27 (2018), pp. 3636-3646
[6]
D. Shi, X. Chen, Z. Li.
Diagnostic test accuracy of the Montreal Cognitive Assessment in the detection of post-stroke cognitive impairment under different stages and cutoffs: a systematic review and meta-analysis.
Neurol Sci, 39 (2018), pp. 705-716
[7]
K.I. Musa, T.J. Keegan.
The change of Barthel Index scores from the time of discharge until 3-month post-discharge among acute stroke patients in Malaysia: a random intercept model.
PLoS One, 13 (2018), pp. e0208594
[8]
F.A. Imarhiagbe, A.U. Asemota, B.A. Oripelaye, J.E. Akpekpe, A.A. Owolabi, A.O. Abidakun, et al.
Burden of informal caregivers of stroke survivors: validation of the Zarit burden interview in an African population.
Ann Afr Med, 16 (2017), pp. 46-51
[9]
D. Rohde, E. Gaynor, M. Large, O. Conway, K. Bennett, D.J. Williams, et al.
Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis.
Top Stroke Rehab, 26 (2019), pp. 180-186
[10]
K.N. Joshi, A.J. John, R. Ramamurthy, N.S. Mehta.
Disability and its relationship with caregiver burden among stroke survivors: a cross-sectional study.
Ind J Physio Occup Ther, 14 (2020), pp. 87-90
[11]
S. Achilike, J.E. Beauchamp, S.G. Cron, M. Okpala, S.S. Payen, L. Baldridge, et al.
Caregiver burden and associated factors among informal caregivers of stroke survivors.
J Neurosci Nurs, 52 (2020), pp. 277-283
[12]
M. Medrano, R.L. Rosario, A.N. Payano, N.R. Capellán.
Burden, anxiety and depression in caregivers of Alzheimer patients in the Dominican Republic.
Dement Neuropsychol, 8 (2014), pp. 384-388
[13]
M. Martín Carrasco, A.I. Domínguez Panchón, P. Muñoz Hermoso, E. González Fraile, J. Ballesteros Rodríguez.
Instrumentos para medir la sobrecarga en el cuidador informal del paciente con demencia.
Rev Esp Geriatr Gerontol, 48 (2013), pp. 276-284
[14]
F. López Espuela, T. González Gil, M.A. Jiménez Gracia, S. Bravo Fernández, J Amarilla Donoso.
Impact on quality of life in caregivers of stroke survivors.
Enferm Clin, 25 (2015), pp. 49-56

Please cite this article as: Sánchez Silverio V, Abuín Porras V, Rodríguez Costa I. Sobrecarga del cuidador con relación al estado cognitivo y la dependencia en las actividades de la vida diaria de pacientes con accidente cerebrovascular: un estudio transversal en la República Dominicana. Rev Cient Soc Esp Enferm Neurol. 2021. https://doi.org/10.1016/j.sedene.2021.05.001

Copyright © 2021. Sociedad Española de Enfermería Neurológica
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