The effect of the COVID-19 pandemic on the caregiving burden of individuals caring for patients with chronic neurological diseases

Abstract

BACKGROUND:

Caring for neurological patients poses a serious burden on caregivers, even in normal times. It is likely that this burden has become even more painful post-COVID-19 pandemic.

OBJECTIVE:

This study evaluates the effect of the COVID-19 pandemic on the care burden of those who care for patients with chronic neurological diseases.

METHODS:

The study included 50 patients and 50 caregivers. All the tests were conducted twice, it was answered firstly, according to the pre-COVID-19 pandemic, and secondly, during the COVID-19 pandemic period. The depression levels of the patients and caregivers were assessed with the Beck Depression Scale, their sleep quality with the Pittsburgh Sleep Quality Index, their quality of life was assessed with the RAND 36-Item Health Survey, and caregivers’ burden of care was evaluated with the Zarit Caregiver Burden Scale.

RESULTS:

It was observed at the end of the study that the depression levels of patients (p = 0.00), and caregivers (p = 0.00) increased post-COVID-19 pandemic, the sleep quality of caregivers (p = 0.00), and patients (p = 0.02) decreased post-COVID-19 pandemic. On the other hand, it was determined that caregivers’ burden of care increased (p = 0.00). Sub-parameters of the RAND 36-Item Health Survey, physical functioning (p = 0.02), role limitations due to physical health (p = 0.00), and role limitations due to emotional problems (p = 0.03) decreased for caregivers.

CONCLUSION:

In summary, we concluded that the well-being and psychological status of both patients and their caregivers were adversely affected by the COVID-19 pandemic.

Keywords

COVID-19 pandemic burden neurological disorders caregiver quality of life depression

1 Introduction

The burden of caregiving is a responsibility that carries serious weight for a long term of the life. Caregivers are Individuals who care for their relatives with neurological diseases are at significant risk of mental and physical health problems due to their relatives’ neurological diagnosis, severity of the disease, behavioral disorders and psychiatric symptoms, limitations in personal needs, professional and social obligations, financial burden and limited family life. In addition, taking on the role of family caregiver and care-related duties creates changes in family structure and functioning and constitutes a notable source of stress for caregivers who undertake significant burdens that may negatively affect their own health [1, 2].

Chronic diseases are conditions that require regular follow-up, support and care to maximize the person’s functionality [3]. The assistance needed by individuals with chronic neurological diseases in their daily living activities is provided mostly by their caregivers. The complexity of the problems in individuals with neurological diseases causes caregivers to need support strategies that include many components such as psychological, physical and economic support. In parallel with the developments in the field of medicine, the survival rates and life expectancy of individuals with chronic diseases are increasing. These developments increase the number of individuals struggling with chronic neurological diseases. Due to this situation, the need for caregivers and the number of caregivers is increasing [4, 5].

On 11 March 2020, the World Health Organization (WHO) declared the infection of coronavirus severe acute respiratory syndrome as COVID-19 pandemic [6]. The current COVID-19 pandemic has greatly affected the world health situation and changed the lives of millions of people, especially the elderly and people with chronic diseases population [7].

Caring for individuals with chronic neurological diseases presents a multitude of challenges for caregivers. It entails taking on additional responsibilities alongside existing ones, and caregivers are often expected to manage both aspects of their lives with excellence. Initially, caregivers grapple with psychological distress, sleep disturbances, reduced quality of life, and inadequate life satisfaction. Subsequently, they may also experience diminished sexual satisfaction and physical issues. There are lots of factors such as aging, cognitive decline, chronic illnesses, multiple health issues, and physical decline significantly impact sexual functioning. Sexual dysfunction is prevalent among patients with Alzheimer’s disease and other forms of dementia. A recent study examined the emotional and sexual aspects of caregivers involved with Alzheimer’s patients. they highlighted a negative correlation between caregiver burden and the overall quality of sexual and emotional well-being [8 –10].

Caring for neurological patients poses a serious burden on caregivers even in normal times. It is likely that this burden has become even more painful post-COVID-19 pandemic. Our study aims to evaluate whether the COVID-19 pandemic has an impact on the workload level and psychological burden of caregivers of individuals with chronic neurological diseases. For this purpose, this study was applied to examine caregivers’ thoughts about care burden, workload, depression levels, quality of life, sleep quality, and sexual life quality before and post-COVID-19 pandemic.

2 Methodology

At the beginning of the study, the cognitive level of the caregivers was evaluated with the Mini Mental State Examination (MMSE) test, and the patients’ needs for care were evaluated with the Barthel Index. A survey consisting of closed-ended questions was applied to caregivers regarding their demographic information, the patient they care for, and the difficulties they experienced in caring for them post-COVID-19 pandemic. Depression levels of both patients and caregivers were evaluated with the Beck Depression Scale, quality of life with the RAND 36-Item Health Survey, sleep quality with the Pittsburgh Sleep Quality Index, sexual life quality with the New Sexual Satisfaction Scale, and mental well-being with the Warwick-Edinburgh Mental Well-Being Scale. Caregivers’ care burden was evaluated with the Zarit Caregiver Burden Scale.

The same scales were applied twice to evaluate the mood before the pandemic and post pandemic. In the first application, patients and caregivers were asked to respond according to the situation and their feelings before the pandemic period. The scales were administered twice by the same researcher physiotherapist. The two applications were made at the same day. We had a 15 minute break between two sessions.

In the first time of the scales were applied, patients and their caregivers were asked to think retrospectively about the difficulties they encountered before the COVID-19 pandemic started and what they experienced in daily life on the issues evaluated in the survey. After all the scales were answered by the patients and caregivers according to their past experiences, they were questioned a second time. In their second evaluation, patients and caregivers were asked to answer the issues questioned in the scales considering what they experienced after the COVID-19 pandemic started and during the days when the scales were applied.

The study was conducted by including patients receiving treatment at the Dogan Special Education and Rehabilitation Center and their caregivers who agreed to participate in the study. A total of 50 patients, 21 women and 29 men, with a mean age of 39.08±15.71 years, and a total of 50 caregivers, 39 women and 11 men, with a mean age of 44.32±11.54 years, were included in our study.

Ethical approval of the study was obtained from Hatay Mustafa Kemal University Research Ethics Committee [Number. 01.07.2021/08).

2.1 Participants

Inclusion criteria for caregivers: Being 18 years or older, no mental problems, scoring 18 points or more according to the MMSE.

Exclusion criteria for caregivers: Those who do not understand or speak Turkish, those who started providing care after the COVID-19 pandemic period.

Inclusion criteria for patients: Have been dependent on care for at least 1 year, had scoring 61 points or less according to the Barthel Index, mentally competent to answer questions.

Exclusion criteria for patients: Those who do not understand or speak Turkish.

2.2 Scales

At the beginning of the study, the cognitive level of the caregivers was evaluated with the MMSE test, and the patients’ needs for care were evaluated with the Barthel Index. A survey consisting of closed-ended questions was applied to caregivers regarding their demographic information, the patient they care for, and the difficulties they experienced in caring for them during the COVID-19 pandemic. Depression levels of both patients and caregivers were evaluated with the Beck Depression Scale, quality of life with the RAND 36-Item Health Survey, sleep quality with the Pittsburgh Sleep Quality Index, sexual life quality with the New Sexual Satisfaction Scale, and mental well-being with the Warwick-Edinburgh Mental Well-Being Scale. Caregivers’ care burden was evaluated with the Zarit Caregiver Burden Scale.

2.2.1 Scales that were solely administered to the caregivers

Zarit Caregiver Burden Scale: It is used to determine the workload of a caregiver who cares for a family member with a chronic disease. The score that can be obtained varies between 18 and 90. It shows that the higher score means the higher workload [11, 12]. Turkish validity and reliability studies of the scale were conducted by ÖzlÜ et al., in 2006 [11].

Mini Mental State Examination Test: This is the most common used test for dementia screening. It consists of eleven items grouped under five main headings: orientation, recording memory, attention and calculation, remembering and language, which are evaluated out of a total of 30 points. Turkish validity and reliability studies of the test were conducted by Güngen et al., [13]. It has been stated that the ideal threshold value for Türkiye is 23/24 [13]. Keskinoglu et al., They stated that the threshold value of the MMSE Test is 22/23 for educated individuals and 18/19 for uneducated individuals [14].

2.2.2 Scales that were administered to both patients and caregivers

RAND 36-Item Health Survey: It is a test consisting of 36 items that the individual fills out by themselves. It includes eight multi-item subscales that evaluate physical functioning, social functioning, role limitations due to physical problems, role limitations due to emotional problems, mental health, vitality, pain, and general health perception [15]. Total score is between 0–100. The higher the score, the better the quality of life is considered. Turkish validity and reliability studies of the scale were conducted by Koçyiğit et al. [16, 17].

Pittsburgh Sleep Quality Index: It is a scale widely applied to many patient groups to determine sleep quality in the last month [18]. It is a self-rated survey. Subjective sleep quality consists of seven items that evaluate sleep latency, sleep duration, efficiency, disturbance, use of sleeping pills, and impairment in daytime tasks. The maximum score that can be obtained from the scale is 21, a score of 5 or above indicates that sleep quality is clinically significantly poor. The validity and reliability of the questionnaire to Turkish patients was made by Agargün et al. [19].

Beck Depression Scale: The scale, developed by Beck et al. in 1961, is used to measure the behavioral findings of depression in adolescents and adults. It consists of 21 items scored between 0–3 [20, 21]. The highest score that can be obtained is 63. Turkish validity and reliability study was conducted by Hisli et al. [21].

The New Sexual Satisfaction Scale: It is a scale which validity and reliability were established by Štulhofere et al. [22]. There are questions regarding the individual’s quality of sexual life. Scoring is between 20 and 100. It shows that the higher the score, the higher the satisfaction level. Turkish validity and reliability studies of the scale were conducted by Tuğut et al. [23].

The Warwick-Edinburgh Mental Well-Being Scale: Tennant et al. [2007] created this scale to measure the mental well-being levels of individuals. It is a 14-item, self-report scale [24, 25]. The individual is asked to state questions regarding his/her emotional state according to a five-point Likert scale. Scores between 14 and 70 are received. Turkish validity and reliability studies of the scale were conducted by Keldal et al., [25].

2.2.3 Scales that were solely administered to the patients

Individuals who were mentally competent to answer the questions were included in the study. Since the patients included in the study received regular rehabilitation services at the institution of the researcher who conducted the study and the researcher had the opportunity to observe the patients regularly, care was taken to invite individuals who were sufficiently adaptable, willing, and mentally competent to answer the questions.

Barthel Index: Defined by Mahoney and colleagues in 1967, it assesses the amount of assistance an individual requires in their daily activities [26]. It is a scale widely used in functional disability to measure the individual’s performance in daily living activities. Its validity and safety in Turkish was evaluated by Küçükdeveci et al., in 2000 Scores between 0–20: Fully dependent; 21–61 scores: Highly dependent; 62–90 scores: Moderately dependent; 91–99 scores: Mildly dependent; 100 scores: It is defined as fully independent [26, 27].

The study’s ethical approval was obtained, and the consent form was signed by the patients and their caregivers. Flowchart of the study has been shown in Fig. 1.

Fig. 1

Flowchart of the study.

2.3 Statistical analysis

The analysis of the data obtained in the study was made using the IBM SPSS Statistics 22 statistical program. Mean±Standard deviation (X±SD) was given for numerical data, number (n) and percentage (%) were given for nominal data. Comparisons for the changes of the groups before and post-COVID-19 pandemic were made using Paired Samples T Test for those with normal distribution, and Wilcoxon Signed Ranks Test for those with non-normal distribution. The significance value was accepted as p≤0.05.

3 Results

The study included 21 women and 29 men, aged between 18–71 years, with an average age of 39.08±15.71 years. Four of the participants diagnosed with spina bifida, 14 with stroke, 16 with cerebral palsy, 1 with Alzheimer’s disease, 1 with Huntington, 4 with muscular dystrophy, 9 with spinal cord injury, and 1 with spinal muscular atrophy. A total of 50 individuals and a total of 50 caregivers, consisting of 39 women and 11 men, with an average age of 44.32±11.54 years between the ages of 21–65, were included (Tables 1 and 2). In the study, the MMSE test was applied to the caregivers and the Barthel Index was applied to the patients, and their averages were determined (Table 1 and 2).

When individuals were evaluated according to the pre-COVID-19 pandemic and post-COVID-19 pandemic period, it was seen that the depression levels of patients (p = 0.05) and caregivers (p = 0.00) increased, the sleep quality of caregivers decreased (p = 0.01), and the care burden of caregivers increased (p = 0.00), (Table 3).

Post-COVID-19 pandemic, patients’ New Sexual Satisfaction Scale scores decreased (p = 0.02), Beck Depression Scale scores increased for patients (p = 0.00) and caregivers (p = 0.00), Pittsburgh Sleep Quality Index scores increased for patients (p = 0.02) and for caregivers (p = 0.00). Sub-parameters of the RAND 36-Item Health Survey, physical functioning (p = 0.02), role limitations due to physical health (p = 0.00), and role limitations due to emotional problems (p = 0.03) decreased for caregivers post-COVID-19 pandemic. Warwick-Edinburgh Mental Well-Being Scale scores decreased for patients (p = 0.01), and for caregivers (p = 0.00), and Zarit Caregiver Burden Scale scores increased (p = 0.00) post-COVID-19 pandemic according the pre-COVID-19 pandemic (Table 4).

Closed-ended questions were asked to caregivers about the period before the COVID-19 pandemic and post-COVID-19 pandemic. It was observed that the COVID-19 pandemic increased the complaints of more than half of the patients and affected their mental health negatively. When caregivers’ daily caregiving time was evaluated, it was seen that the highest rate of caregivers (40%) provided care for 16–24 hours. It was determined that the COVID-19 pandemic put a lot of pressure on caregivers, and they did not think that their care burden would be the same as in the pre-COVID-19 pandemic period (Table 2, 5).

4 Discussion

As a result of our study, which was planned to examine the effects of the COVID-19 pandemic on the quality of life, sleep quality, depression level, mental well-being, sexual life quality and care burden in individuals with chronic neurological disease and their caregivers, it was found that the COVID-19 pandemic affected both patients and caregivers negatively. It has been determined that the depression levels of patients and caregivers increased, the sleep quality, and mental well-being of caregivers and patients decreased, and the care burden and quality of life of caregivers was affected negatively. Therefore, it has been determined that individuals with chronic neurological diseases and their caregivers have been negatively affected in many ways due to the COVID-19 pandemic, and it has been concluded that physical and psychological supportive interventions for patients and caregivers should be increased. It has been revealed that neurological diseases, which have a heavy care burden even in normal times, cause the care burden to be heavier post-COVID-19 pandemic.

Table 1
Demographic characteristics, and Barthel Index results of the patients

Patient

n (50)

Sex Female (n/%) 21/42

Male (n/%) 29/58

Age X±SD 39.08±15.71

Diagnosis Spina Bifida (n/%) 4/8

Stroke (n/%) 14/28

Cerebral Palsy (n/%) 16/32

Alzheimer’s Disease (n/%) 1/2

Huntington (n/%) 1/2

Muscular Dystrophy (n/%) 4/8

Spinal Cord Injury (n/%) 9/18

Spinal Muscular Atrophy (n/%) 1/2

Barthel Index Total Dependent (n/%) 1/2

Severe Dependent (n/%) 49/98

X±SD 49.00±11.82

		Patient
		n (50)
Sex	Female (n/%)	21/42
	Male (n/%)	29/58
Age	X±SD	39.08±15.71
Diagnosis	Spina Bifida (n/%)	4/8
	Stroke (n/%)	14/28
	Cerebral Palsy (n/%)	16/32
	Alzheimer’s Disease (n/%)	1/2
	Huntington (n/%)	1/2
	Muscular Dystrophy (n/%)	4/8
	Spinal Cord Injury (n/%)	9/18
	Spinal Muscular Atrophy (n/%)	1/2
Barthel Index	Total Dependent (n/%)	1/2
	Severe Dependent (n/%)	49/98
	X±SD	49.00±11.82

Table 2

Demographic characteristics and, Mini Mental State Examination Test results of the caregivers

		Caregiver n (50)
Sex	Female (n/%)	39/78
	Male (n/%)	11/22
Mini Mental State Examination Test	(X±SD)	27.32±3.30
Age (years)	(X±SD)	44.32±11.54
Care Duration in a Day (0–24 hour)		How many hours a day do you care for your patient?
	0–7.9 hour	12/24
	8–15.9 hour	18/36
	16–24 hour	20/40

Looking at the literature, long-term caregivers are more likely to have mental health problems than short-term caregivers, and both are more likely to have mental health problems than non-caregivers is stated [28]. In our study, the mental status of the caregivers was measured with the Mini Mental Test before the study to obtain accurate results from the caregivers [13, 16]. In our study, the average Mini Mental Test result of the caregivers was found to be 27.32±3.30, and no mental deficiency was observed when they were included in the study.

In a study conducted in Japan, it was found that individuals’ long-term care needs are correlated with their level of required care [29]. Before the study, the motor and functional status of the patients was evaluated with the Barthel Index to determine how much care they needed in their daily activities. Highly dependent and fully dependent patients were included in our study.

There are studies in the literature indicating that there is a high caregiver burden in caregivers of neurological patients [30]. Family caregivers of stroke survivors experience significant stress due to sudden stroke events and the demanding nature of caregiving tasks. Factors influencing their mental health stress responses include the progression of the disease, economic impact, responsibility for other family members, and understanding of stroke-related conditions. Caregivers of individuals with Multiple Sclerosis (MS) may face additional strain due to the age at onset and progressive nature of the disease [31, 32]. In our study, caregivers’ care burdens before and after the COVID-19 pandemic were evaluated with the Zarit Caregiver Burden Scale. As a result of the evaluation, it was determined that the average score of the scale increased after the COVID-19 pandemic compared to the pre-COVID-19 pandemic period. It is thought that this result arises from the necessity for patients and caregivers to stay at home all day long and meet all needs at home due to the mandatory isolation post-COVID-19 pandemic. It has also been stated that the COVID-19 pandemic contributed to an increase in anxiety, depression, and sleep abnormalities in caregivers [33]. In our study, the sleep quality of caregivers was evaluated with the Pittsburgh Sleep Quality Index both before and after the COVID-19 pandemic. As a result of the evaluation, it was observed that there was a decrease in the sleep quality of the caregivers. It is thought that the disruptions and changes experienced by patients in their daily activities due to being constantly at home and the increase in the severity of depression they experience are effective in the deterioration of sleep quality. Parameters such as caregiving burden, sleep quality, quality of life and depression are not independent from each other but affect each other. Therefore, it is inevitable that a negative change in one parameter will negatively affect other parameters like a domino effect.

Table 3

Beck Depression Scale, Pittsburgh Sleep Quality Index, Zarit Caregiver Burden Scale results of patients and their caregivers for pre- and post- COVID-19 Pandemic

Pre-COVID-19				Post-COVID-19
Pandemic Results				Pandemic Results
Patient		Caregiver		Patient		Caregiver		Patient		Caregiver
	n (50)	% 100	n (50)	% 100	n (50)	% 100	n (50)	% 100	z^*	P	z^*	p
Beck Depression	Minimal	22	44.0	41	82.0	13	26.0	30	60.0	–1.91	0.05	–2.74	0.00
Scale	Mild	18	36.0	9	18.0	20	40.0	17	34.0
Moderate	9	18.0	–	–	16	32.0	3	6.0
Severe	1	2.0	–	–	1	2.0	–	–
Pittsburgh Sleep	Good	17	34.0	12	24.0	15	30.0	5	10.0	–0.42	0.67	–2.39	0.01
Quality Index	Bad	33	66.0	38	76.0	35	70.0	45	90.0
Zarit Caregiver	Mild	–	–	21	42.0	–	–	7	14.0	–	–	–3.46	0.00
Burden Scale	Moderate	–	–	17	34.0	–	–	10	20.0
Severe	–	–	12	24.0	–	–	33	66.0

^*Wilcoxon Signed Ranks Test.

Table 4

New Sexual Satisfaction Scale, Beck Depression Scale, Pittsburgh Sleep Quality Index, RAND 36-Item Health Survey, Warwick-Edinburgh Mental Well-Being Scale, Zarit Caregiver Burden Scale results of patients and their caregivers for pre- and post- COVID-19 Pandemic

Pre-COVID-19		Post-COVID-19
Pandemic Results		Pandemic Results
	Patient	Caregiver	Patient	Caregiver	Patient	Caregiver
	X±SD	X±SD	X±SD	X±SD	z^/t^*	p	z^/t^*	p
New Sexual Satisfaction Scale	54.55±17.15	63.60±18.85	45.86±18.16	60.80±18.22	–2.31^*	0.02	–0.83^*	0.40
Beck Depression Scale	11.08±6.14	4.70±3.98	15.18±6.85	8.92±4.43	–3.13^**	0.00	–5.80^**	0.00
Pittsburgh Sleep Quality Index	6.38±3.51	7.88±4.32	8.20±4.23	10.50±4.82	–2.22^*	0.02	–2.98^*	0.00
RAND 36-Item	Physical Functioning	26.90±21.63	74.90±19.04	20.90±19.42	66.50±23.73	–1.44^*	0.14	–2.28^*	0.02
Health Survey	Role limitations due to physical health	59.00±40.01	93.00±17.52	43.50±38.40	75.00±32.34	–1.90^*	0.05	–3.33^*	0.00
	Role limitations due to emotional problems	72.00±38.89	88.66±22.94	57.33±41.53	77.33±33.96	–1.52^*	0.12	–2.16^*	0.03
	Energy/fatigue	50.40±18.03	51.20±13.42	44.40±19.78	46.61±13.01	1.91^**	0.62	–1.82^*	0.68
	Emotional well-being	55.52±18.65	58.16±8.71	52.00±19.24	57.68±14.25	1.10^**	0.27	–0.41^*	0.67
	Social Functioning	65.00±21.12	79.65±15.80	57.00±21.74	73.50±15.899	–1.75^*	0.07	–1.83^*	0.06
	Pain	66.59±17.78	72.21±17.76	59.15±19.66	64.55±20.87	–1.60^*	0.10	–1.81^*	0.07
	General Health	36.80±18.67	57.40±15.94	33.20±19.89	56.50±16.20	1.23^*	0.22	0.28^*	0.77
The Warwick Edinburgh Mental Well-being Scale	46.06±9.99	50.98±8.15	40.96±10.92	45.58±8.69	–2.35^*	0.01	–5.91^*	0.00
Zarit Caregiver Burden Scale	–	48.90±9.95	–	58.16±10.84	–	–	–4.06^**	0.00

^* Wilcoxon Signed Ranks Test, ^** Paired Samples T Test.

Table 5

Results of the subjective data of the caregivers for the pre- and post- COVID-19

	Yes		No
Closed-ended questions	n (50)	% 100	n (50)	% 100
Have your patient’s complaints	26	52.0	24	48.0
increased since the
COVID-19 pandemic?
Has the COVID-19 pandemic	30	60.0	20	40.0
affected your patient’s
mental health?
Likert type questions	n (50)	% 100
Are you able to find time for	Always	26	52.0
yourself during the post-	Most of the time	12	24.0
COVID-19 pandemic?	Sometimes	4	8.0
	Rarely	7	14.0
	Never	1	2.0
How much the COVID-19	Severe Difficult	34	68.0
pandemic caused challenges	Moderately Difficult	2	4.0
for you in patient care?	Mildly Difficult	3	6.0
	Not Dificcult	11	22.0
Do you agree that your caregiving	I strongly disagree	27	54.0
burden may return to the same	I do not agree	7	14.0
level as it was before the	I’m undecided	3	6.0
COVID-19 pandemic?	I agree	7	14.0
	Absolutely I agree	6	12.0

In a study conducted with caregivers of individuals with dementia, it was found that caregivers face the risk of depression and anxiety [34]. In our study, an evaluation was made for the pre- and during COVID-19 pandemic period with the Beck Depression Scale to examine the effect of the COVID-19 pandemic on depression in caregivers. As a result of the evaluation, it was determined that the depression level of caregivers increased. It is thought that the increased workload post-COVID-19 pandemic and the stress level resulting from the mandatory changes in health practices and lifestyles brought about by an unexpected pandemic also affected the level of depression.

Studies have shown that caregiving affects the caregiver’s quality of life due to its physiological, psychological, economic, and social dimensions [35, 36]. Researchers have found that caregivers providing care for individuals with MS also experience a significant amount of caregiving related stress, which in turn can negatively influence their quality of life [32]. In our study, an evaluation was made for the pre- and during COVID-19 pandemic period with the RAND 36-Item Health Survey to determine the quality of life of caregivers. It was observed that the scores for physical function, physical role difficulty and emotional role difficulty, which are the sub-parameters of the scale, decreased. It is thought that this situation is due to the physical and emotional fatigue brought on by the increased responsibility and care burden in patient care post-COVID-19 Pandemic period.

In a study conducted 1 month after the start of the COVID-19 quarantine in Italy, an increase in neuropsychiatric symptoms was observed in people with a family member with dementia [37]. In our study, an evaluation was made with The Warwick-Edinburgh Mental Well-Being Scale to determine the change in the mental well-being level of caregivers post-COVID-19 pandemic. It was determined that the average score of the scale decreased. This situation, as stated in the literature, is due to caregivers putting themselves in the background compared to patients and ignoring the psychological and emotional difficulties they experience. The mental well-being of caregivers who do not receive external support regarding the difficulties they experience gradually deteriorates.

When we look at the literature, no single study has been found on the quality of sexual life in caregivers of different chronic neurological patients. For this purpose, the sexual life quality of caregivers and patients was evaluated before and after the COVID-19 pandemic using the New Sexual Satisfaction Scale. As a result of the evaluation, it was determined that the sexual life quality of patients decreased, while the COVID-19 pandemic did not have a statistically significant effect on caregivers’ sexual life quality.

In the study of Gualono and his colleagues, it was found that quarantine caused insomnia [38]. To evaluate the sleep quality of different neurological diseases, an evaluation was made for the COVID-19 pandemic period and before, using the Pittsburgh Sleep Quality Index in our study. As a result of the evaluation, it was observed that there was a decrease in the sleep quality of the patients. This situation arises from the disruption of daily life activities for patients who are confined to their homes, not having to wake up early in the morning due to both quarantine and isolation measures during the COVID-19 pandemic, as well as the physical limitations imposed by the disease. Additionally, insomnia may be exacerbated by the increasing severity of depression.

In a study evaluating the impact of COVID-19 on mental health, Wang and colleagues found moderate-severe stress, depression, and anxiety in people [39]. In our study, the Beck Depression Scale and Warwick-Edinburgh Mental Well-Being Scale were used to evaluate patients’ depression and mental health according to the pre- and during COVID-19 pandemic period. It was observed that the mean score of the Beck Depression Scale increased, while the mean score of the Warwick-Edinburgh Mental Well-Being Scale decreased. Based on the information in the literature, it is thought that the psychological impact of the COVID-19 pandemic is high in chronic neurological diseases. The change in the psychological state of individuals manifests itself with depressive symptoms and changes in positive mental health.

A study stated that chronic progressive neurological disorders have effects on quality of life, health status, mental health, and physical health [40]. In our study, the RAND 36-Item Health Survey was applied to evaluate all these parameters of individuals with different neurological diseases and especially the quality of life of the patients. As a result of the scale, when the period before the COVID-19 pandemic and post-COVID-19 pandemic were compared, it was seen that only the decrease in the scores for physical role difficulty, one of the sub-parameters, was statistically significant. It can be thought that this result is because patients with chronic neurological diseases were not satisfied with the conditions regarding other parameters before the COVID-19 pandemic period, due to the deterioration in the quality of life seen from the period when the disease started to progress.

Sexual dysfunction is seen in chronic neurological diseases. For this purpose, in our study, the New Sexual Satisfaction Scale was applied to adult individuals with different chronic neurological diseases, and they were asked to answer according to the period before the COVID-19 pandemic and post-COVID-19 pandemic. As a result of the study, it was observed that the quality of sexual life decreased in patients. It is thought that psychological problems caused by the COVID-19 pandemic, decreased well-being, and physical restrictions resulting from worsening symptoms of the disease were effective in the change.

When caregiving hours were questioned in our study, it was observed that the majority of the caregiver spent most of the day taking care of patients. It is thought that with the quarantine period brought about by the COVID-19 pandemic, caregivers were laid off from their jobs, started working at home, or their social lives were restricted during this period, and they spent more time at home. Being at home, as many people experienced during the pandemic, required both doing the work at home and doing the work we were responsible for outside. This meant that going to work was sometimes a way for individuals bearing the burden of care to breathe and socialize. However, due to the pandemic, they had to provide care of the patient, the burden of taking care of the house, and also the burden of completing work outside. This has caused increasing in caregiving time and the burden of care to be perceived as greater by caregivers.

They were asked to evaluate both the pre- and post-pandemic situation on the same day. When interpreting emotional states for pre-pandemic, we recognize that patients and caregivers are influenced by their emotions at the time the survey was conducted. It reveals that individuals perceive how the pandemic affects them, even if the answers they give at that moment do not fully reflect the situation before the pandemic. Our aim in the study is to reveal how the pandemic affects the emotional states of neurological patients and their caregivers.

It has been determined that the COVID-19 pandemic has put a lot of pressure on caregivers and that they do not think that their care burden will be the same as in the pre-COVID-19 pandemic period again. It is thought that this situation is due to the increasing responsibilities of caregivers during the COVID-19 pandemic, the degree of difficulty they experience in the caregiving process, and the perception of care burden will go on forever. It was determined that during this process, their need for help increased and they asked for more support from their environment.

In our study, it was determined that the mental and emotional health of more than half of the patients was negatively affected, and their symptoms of the disease increased. It is thought that the negative impact on the mental health of patients, who are negatively affected by the difficulties they face in daily life due to their neurological diseases, post-COVID-19 pandemic period is because the process affects daily life greatly and makes it more difficult. In addition, it is thought that the increase in patients’ complaints is caused by the physical limitation of this process, which restricts life in every aspect.

In the study, prompting patients to recall their emotions and circumstances from the pre-COVID-19 period while they are currently experiencing the pandemic may lead readers to question whether the patients and their caregivers accurately remember those past emotions and situations, potentially resulting in erroneous responses influenced by present emotions and circumstances. However, this approach aligns with our objectives. We aim for patients and caregivers to contrast their feelings and situations before and after the onset of COVID-19. The difficult circumstances participants face may cause them to idealize the past, consequently perceiving their current situation more negatively. Although this might appear as a limitation, it serves our purpose of assessing the impact of COVID-19 on the participants. By capturing their perspectives, we believe the results authentically reflect their emotions and circumstances, illuminating the true extent of COVID-19’s influence on them.

4.1 Limitations of the study

The study has several limitations. Our study is limited in that it asked patients and caregivers to compare their situations and feelings both pre- and post-COVID-19 pandemic, on the same day. However, our study aims to reveal the burden of the pandemic on caregivers and chronic neurological patients and to compare pre-COVID-19 and post-COVID-19 situations and feelings. Although this limitation exists, it aligns with our purpose. The additional burden created by the pandemic may have led patients and caregivers to perceive their situation as worse than before the pandemic. Nonetheless, this discrepancy does not affect our objectives.

Also, the disease groups could not be diversified as the research was confined to the first 50 patients and their caregivers who agreed to participate in the survey. Additionally, the distribution of disease groups in the study was uneven. Moreover, the sample size was restricted to individuals residing in a specific region. Conducting studies with larger and more diverse samples, ensuring equal representation of disease groups, will yield more comprehensive insights into the challenges faced by caregivers in specific diseases.

During our study, surveys were administered twice, covering both the pre-COVID-19 pandemic period and the COVID-19 pandemic period. Participants were hesitant to allocate time, given the need to evaluate both the patient and the caregiver separately. There was also reluctance to share information, and not every participant was willing to respond to the New Sexual Satisfaction Scale due to cultural prejudices and privacy concerns.

5 Conclusion

Our study delves into the multifaceted impact of the COVID-19 pandemic on patients and caregivers. The findings suggest that the well-being and psychological states of individuals with chronic neurological diseases, as well as their caregivers, are negatively affected by the COVID-19 pandemic. Consequently, integrating psychological support services into health policies post-COVID-19 pandemic is crucial. Future studies addressing the issues explored in this research are expected to benefit from multifaceted support interventions, promoting the physical and psychological well-being of caregivers and individuals with chronic neurological diseases, enabling them to assume a more significant role in society.

In many countries, there are many public and private organizations that support caregivers. It has been seen that these organizations have no opponents in our country. Therefore, chronic patients and their caregivers are forced to struggle alone with a difficult situation that they have to struggle with throughout their lives. These challenges have become even more extreme during the pandemic process. It is extremely important to increase and disseminate caregiver support organizations and to try to support caregivers.

It has been revealed that neurological diseases, which have a heavy care burden even in normal times, cause the care burden to be heavier post-COVID-19 pandemic.

Acknowledgments and declarations

Ethical approval

Ethical approval of the study was obtained from Hatay Mustafa Kemal University Research Ethics Committee [Number. 01.07.2021/08).

Informed consent

Informed consent was obtained from all participants/respondents.

Conflict of interest

None to report.

Footnotes

Acknowledgments

Not applicable.

Funding

Not applicable.

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