Perceptions of Workload in Caregivers Involved in the Care of Patients with Parkinson’s Disease: An Exploratory - Correlational Study

Background

Parkinson’s disease (PD) is one of the most debilitating conditions known today that can affect anyone. It is considered one of the great emergencies of the ever-increasing future. Understanding the needs of patients and the difficulties of caregivers can make a difference and improve the quality of life for both the patient and caregiver.

Aim

To measure family overload and identify possible areas of intervention among a population of Italian caregivers.

Methods

All caregivers who daily interact with the relative with PD and signed the informed consent were included. Nevertheless, I would add a short explanation on the source of recruitment. The study was conducted by administering 137 questionnaires to caregivers of Parkinson’s patients from February to June 2021. Each caregiver was presented with the research project with their prior consent, and only after they had given their consent was it possible to complete the online questionnaire, which was published on the various sites of caregivers and associations for people with Parkinson’s disease.

The data collection instrument, consisting of a socio-demographic section and the Caregiver Overload Scale, was administered to each participant.

Results

A total of 137 caregivers participated in the study, showing a greater perceived burden in those “engaged” civilly (p = .002) and who care for patients with advanced PD (p = .023). They also reported that their lives were significantly changed both socially (p = .014) and occupationally (p < .001).

Conclusions

The study found that the caregivers interviewed were moderately overloaded according to the Caregiver Overload Scale, so it is clear that recognizing the importance of this role and providing the necessary support to caregivers simplifies the diagnostic-therapeutic process, favors and preserves the person’s autonomy.

INTRODUCTION

According to the Global Burden of Disease study, neurological disorders are currently the leading source of disability worldwide ¹. Parkinson’s disease (PD) is one of the most prevalent neurological disorders ². Approximately 8.5 million men and women worldwide are affected by this disease ³. Parkinson’s disease predominantly affects the male sex of an average age above 75 years old, although there are some exceptions ⁴. The prevalence of PD is very variable in the world, with estimates ranging from 15/100.000 inhabitants in China, to 150-200/100.000 inhabitants in Europe and North America. In Italy, this disease affects about 230.000 people, of which about 5% are younger than 50 years old, while 70% are older than 65 years old. The disease is slightly more frequent in males with an incidence 1.5-2 higher than in females. The disease occurs worldwide and in all ethnic groups. The average age of onset is around 58-60 years, but about 5% of affected people may have a juvenile onset between 21 and 40 years. Before the age of 20 it is extremely rare ^5,6. Above 60 years of age it affects 1-2% of the population, while the percentage rises to 3-5% when the age is over 85 ⁷. It is also possible to recognize areas in Italy, based on studies conducted between 1979 and 2019, where the pathology shows a higher prevalence: Piedmont, Lombardy, Marche, Apulia, Sicily and the Aeolian Islands ⁸. The prevalence of the disease in certain areas of Italy suggests a correlation between the onset of the disease and environmental factors. The In fact, the increased risk of developing PD is associated with exposure to pesticides, excessive consumption of dairy products ⁹. Evidence from epidemiological studies suggests an association between cigarette smoking and a low risk of Parkinson’s disease (PD). As a major component of tobacco smoke, nicotine has been proposed as a preventive agent against PD risk, playing a key role in the regulation of striatal activity and behaviour mediated by the dopaminergic system ⁹. Animal studies have also shown that nicotine can modulate dopamine transmission and reduce levodopa-induced dyskinesias. However, clinical trials to date have produced controversial results regarding nicotine treatment. In this review, we updated epidemiological, preclinical and clinical data, as well as studies on dietary nicotine. We also reviewed interactions between genetic factors and cigarette smoking. As a small amount of nicotine can saturate a significant proportion of nicotine receptors in the brain, nicotine from other sources, such as diet, may be a promising therapeutic agent for protection against PD ¹⁰.

A European observational study, the PRISM study – Parkinson’s Real-world Impact asesSMent – assessed the burden of PD on the patient and their caregiver ¹¹. In this study, patients reported a high number of comorbidities. Caregivers, who were mostly women (64.8%), and the partner/spouse of the Parkinson’s patient (82.1%), reported a mild to moderate caregiver burden. A greater understanding of this burden and the reasons for it can help neurologists in their clinical practice, along with patient associations which also have a role in supporting patients and their caregivers in coping with this burden. Increased well-being of family members also leads in turn to increased patient well-being and improved outcomes ¹². Knowing the nature of the illness that afflicts the sick relative and the therapies used by medical personnel to treat it is reassuring and providing information on how to manage the symptoms of the illness, allowing the development of functional coping strategies, with a consequent decrease in stress related to the inability to manage the patient. The literature highlights that burden is not a characteristic of a single disease but is a universal phenomenon that increases over time of caring for an elderly person with a chronic disease ¹³. In the case of PD, the evidence presents numerous triggering factors including: the economic costs of the disease, concerns about the safety of the person among which stands out the risk of falling ¹⁴, the intensity of caregiving measured in hours per day multiplied by years of care, the presence of clinical depression in the loved one, the onset of neuropsychiatric disorders such as confusion and hallucinations ¹⁵ and sleep disorders ¹⁶. Some studies show that an element that strongly favors caregiver burden is the progressive disability of the cared-for person in activities of daily living ^17,18. To this end, more resources should be invested in the caregiver’s psychological and physical health. Increased well-being of family members also leads, in turn, to increased patient well-being and improved outcomes ¹⁹. However, the inability to recognize and manage caregiver burden may lead to burnout and premature institutionalization of the person with PD ²⁰. To date, the studies published on this subject are few, both in the Italian context and in the international one, and they are mostly local studies. Therefore, to better understand the phenomenon and to be able to start future health interventions to support caregivers and reduce their burden of care, it was decided to launch this study on a national scale. The aim of the study, conducted among a population of Italian caregivers of patients with PD, was to measure the family overload and identify which areas are most affected to identify possible areas of intervention.

MATERIALS AND METHODS

STUDY DESIGN

The study is observational, cross-sectional, and multicenter.

CLINICAL SETTING

The study included associations and caregivers of people with PD older than 18 years, of any, degree of relationship and social level.

PARTICIPANTS AND CENTERS

Prior to the start of the study, the participants were informed with respect to the modalities and purposes of the study and agreed to participate by signing the informed consent.

RECRUITMENT CRITERIA

All caregivers who daily interact with the relative with PD and who signed the informed consent were included. Instead, those who did not agree to participate in the study, including incomplete questionnaires, were excluded. The research project was presented to each caregiver and only after their consent was it possible to complete the online questionnaire, published on the various pages of caregivers and associations for people with PD.

STUDY PROCEDURES

The data collection instrument, described in the next section, was administered to each participant with an online form ²².

SAMPLING AND INSTRUMENTS USED

The study was conducted from January to June 2021. The instrument of investigation is constituted by a first section that detects the socio-demographic data of the sample under investigation, a second section that analyzes the training of the caregiver and how much it is served or not and finally an instrument that is the Scale of Caregiver Overload ²², an instrument of evaluation of the care load. It is a self-report instrument, compiled by the main caregiver, i.e., the family member or caregiver who bears the greatest burden of caring for the patient. The caregiver is asked to answer by ticking the box that comes closest to his/her condition or personal impression. It is a tool of rapid compilation and of simple understanding. It allows to evaluate different factors of the stress: objective load, psychological load, physical load, social load, emotional load. Finally, there is an open question that allows the caregiver to express his/her emotions while filling out the questionnaire.

SAMPLING AND INSTRUMENTS USED

The administered questionnaire consists of a form containing socio-demographic and caregiver-related information (gender, age, profession, marital status, geographic area in which he/she lives, religious beliefs, level of education), the Caregiver Overload Scale ²². This is an instrument (22 items) that explores different levels of self-sufficiency (ADL and IADL scales). The multifactorial nature (5 well-balanced subscales) of this instrument allows an overall unitary measurement of burden. The response mode provides a Likert scale from 0 (never) to 4 (almost always) based on the degree of agreement with the individual item.

• SCORING: total sum of the scores of the single items between 0 (no care load) and 88 (maximum level of care load);
• values less than 20: minimal or no care burden;
• values between 21-40: light to moderate load;
• values between 41-60: moderate to severe load;
• values between 61-88: severe care burden;
• CUT-OFF: score above 24-26 identifies those caregivers for whom an in-depth investigation and a possible support intervention would be indicated ²².

RESULTS

A total of 137 caregivers were enrolled in this study. Table I showed all socio-demographic characteristics collected on recruited caregivers.

Then, Spearman correlations were assessed between Zarit levels, and all socio-demographic considered (Tab. II). Significant correlations were performed between caregivers’ workloads and marital status (p = .002), Parkinson disease levels (p = .023), social life (p = .014) and working life (p < .001).

Table III showed how significant correlations influenced the caregivers’ workloads. Specifically, caregivers who had a bond with another person recorded higher workload level than the other. Also, caregivers who took care of people affected by PD at an advanced level registered higher level of burden than the other caregivers who dealt with people suffered from initial or final stage of disease. Also, the greatest part of caregivers reported that the condition of caregiver influenced both their social and working lives.

DISCUSSION

The present study was conducted among a population of Italian caregivers of patients with PD to assess the family overload and at the same time identify which areas of the caregiver’s life are more involved to identify possible areas of intervention. The results obtained showed that the load perceived by caregivers is greater in those “engaged” civilly (p = .002) who assist patients with advanced PD (p = .023) and who undoubtedly declare that their lives have changed both from a social point of view (p = .014) and work (p < .001). Our data appear to agree with what has already been highlighted in the literature, although several studies have focused on the burden of caregiving ^23-28, little is known about the quality of their lives. In addition, decreased activities of daily living, meaning impaired physical function, has been shown to be an important factor in caregiving assessment, including caregiving burden ^27-29. This aspect includes comorbidities, such as cardiovascular disease and delirium, that affect the caregiver’s cognitive function and makes caregiving even more difficult ^30,31. In any case, our results support those of previous studies, which indicated that caregivers’ quality of life deteriorates when the caregiver with PD has comorbidities or physical disabilities, because of PD progression ^26-27,32. Therefore, caregivers experience a higher burden of care and a reduction in their quality of life ^26-28,33-34. For example, in the study by Kim et al. ³², the level of disability was the most significant factor associated with caregiver burden. The convenience sample in this study included twice as many female caregivers as male caregivers. This shows that most patients are male and therefore most caregivers are female and reflects the Korean cultural context in which most caregivers are female. The results indicate that the degree of caregiver burden did not differ between being employed or unemployed, or between being male or female. However, the age of a caregiver was significantly correlated with caregiver burden. Individuals younger than 41 years of age who were more likely to access social support reported significantly lower subjective caregiver burden. Caregivers who had more confident perceptions of illness appeared to have lower burden, but this result was not statistically significant. Caregivers show the highest subjective and objective burdens at 1-5 years after PD diagnosis. In this regard, the literature highlights that, as the disease progresses, rehabilitation nurses should support and manage PD patients and their caregivers across the continuum of care ^35,36 and develop different educational programs, such as disease education and emotional support programs ^36,37. The results of our study highlight that caregiving time is not significant in determining family burden. This appears to disagree with what has been shown in the literature, in which the duration of PD had a significant influence on the quality of life of caregivers. In fact, it is shown that the longer the duration of PD, the lower the quality of life of caregivers ^25,38. This suggests that with changes in activities of daily living or functional decline, support systems are required with long-term conditions. However, duration of illness has been shown not to affect caregiver burden, in contrast to the findings of Kim et al. ³² and Razali et al. ²⁵. This suggests that there are many factors that need to be considered, such as disease progression, disease duration, functional disability, and psychological symptoms of the PD patient and caregivers. Therefore, our data on the time factor also finds an explanation consistent with what has already been reported in the literature. In addition, our data show that all caregivers who are civilly “engaged” in any social relationship at home appear to perceive a greater emotional and physical burden in their condition of caregiver. This finding is not comparable with what has been reported in the literature. In fact, it has been seen that spouses of elderly caregivers have a poor quality of life and again, in a study by Razali et al. ²⁵, married caregivers reported a lower burden of care than single or divorced caregivers. Furthermore, most caregivers’ sociodemographic characteristics such as marital status did not affect their quality of life. Regarding the age and gender of caregivers, there were inconsistent reports in the literature, indicating the need for continued research in this area. Our data in this regard also showed no statistical significance with caregivers’ perceived emotional and physical burden regarding both age (p = .178) and gender (p = .728). In literature, the socio-demographic profile of informal caregiver is found to be female (83.8%), about 50 years old, married (74.7%), with degree of daughter-in-law (47.6%), unemployed (55.7%), living in a rural area (73.9%) and with reasonable socio-economic status (40.4%). Females who are about 50 years old stand out as caregivers. These data are reported in other studies ^39-43 that emphasize the role of women as caregivers in Western and other cultures who represent the closest family members to provide the most care. In addition, informal caregivers without partners, with jobs and residing in urban areas have higher socioeconomic status. This may indicate that in terms of lifestyles, the rural-urban dichotomy may be significant in many aspects such as having knowledge, culture, and access to health care. To summarize, the findings argue that the socioeconomic variable could be a predictive indicator of perceived caregiver emotional and physical burden. Thus, the essentially factual nature of the knowledge resulting from the study can be acknowledged, as it was supported in the assessment of informal caregivers as the object of nursing practices centered “on mental health promotion, prevention, diagnosis and intervention in the face of maladaptive or dysfunctional people” responses to transition processes, cause of suffering, change or mental illness” ⁴⁴. Thus, the following guidelines for the daily management of caregiving in the person with PD emerge: the need to plan interventions focused on the caregiver’s psychological needs, providing support for home care practice with better education, support, and services for family caregivers. It is also important to reformulate nursing courses and programs and include the issue of informal caregivers’ experiences, including bio-psychosocial implications. Providing care for a family member with PD can have far-reaching effects on the caregiver’s social activities, emotional health, and stress ^34,45. These considerations appear to agree with our data as the caregivers we interviewed experienced a change in their social life during their caregiving experience. Another aspect that needs to be explored is that which concerns the difficulties encountered by the patient and his family in the acceptance phase of the diagnosis of PD ⁴⁶. The diagnosis and the awareness of all that this disease will entail can throw the patient, but also the entire family nucleus, into a state of deep depression, despair, and sense of impotence. Denying the disease is an attitude that, if on the one hand can, at least initially, preserve the patient and his family from an unbearable pain, on the other hand is a counterproductive attitude since it can hinder the ability to take note of the pathology and thus delay the beginning of the treatment. In fact, PD must be treated immediately and as soon as possible, since a correct and timely therapy could make it possible to delay its progress ⁴⁷. Acceptance is a never-ending process for these patients; in fact, PD causes many changes, and each change is followed by an inevitable adjustment and acceptance of the new situation. Another aspect that needs to be explored in depth through qualitative studies, a dimension that has been little explored in the literature, concerns communication with the care team and inadequate psycho-educational support, factors that may contribute to decreasing the quality of life of patients and increase the burden and emotional stress of caregivers, contributing to the poor use of formal support ^48,49.

STRENGTHS AND LIMITATIONS

The collected sample considered caregiver status only, without emphasizing any difference between formal and informal caregivers. Moreover, the main limitation of our study is the relatively small sample size. In any case, the results obtained may have practical implications for the care of PD patients and their caregivers. Indeed, they could help to identify caregivers at risk of psychosocial burden and lead to a reduction in stress.

CONCLUSIONS

From the data obtained from the present study and the comparisons made with the available literature, it could be deduced that there is a pressing need for educational programs for caregivers, which would improve the experience of caregiving and at the same time improve the management of emotional stress as well as the burden of care. To develop effective interventions, it is necessary to know what the components of burden are ¹⁴ and for this reason the results of this research are offered as a starting point for the planning of nursing interventions aimed at reducing the burden of caregivers caring for a person with PD ⁵⁰. Considering the results and the limits that have emerged, it could be useful to conduct further quantitative, multicentric studies with a more representative sample, aimed at investigating more specifically the support needs expressed by caregivers, for example in relation to the various phases of disease. Nurses, who are called to take care of patients with chronic diseases both at home and in homes, could better assist informal caregivers through the understanding and knowledge of their needs, often unexpressed. In addition, very interesting could be the idea arising from other studies, namely the creation of a nurse-led navigation program that would ensure the continuum of care to address the behavioral approach to the patient with PD. Therefore, nurses should assess the needs of the caregiver’s educational program and assessment and develop an individualized intervention program using social support to improve caregivers’ quality of life ^51,52.

Conflict of interest statement

The authors declare no conflict of interest.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Author contributions

EVRL: conceptualization, methodology, software, validation, data curation formal analysis, writing-original draft preparation and writing-review; RP, AC, MM, MCCC: data collection; LC: writing-review and editing. All authors read and approved the final version of the manuscript.

Ethical consideration

Within the presentation of the questionnaire, the ethical characteristics of the study, the purpose of the processing of information for educational purposes and the protection and confidentiality of data from the research under Law No. 675 of 1996 were stated.

Figures and tables

Table I. Socio-demographic characteristics on caregivers enrolled (n = 137).

Variables	n (%)
Gender:
Female	105(76.6)
Male	32(23.4)
Marital status:
Married, cohabiting	118(86.1)
Not committed (divorced, separated, single)	19(13.9)
Age (y):
< 40	15(10.9)
41-50	30(21.9)
51-60	39(28.5)
> 61	53(38.7)
Employment status:
Occupied	84(61.3)
Not busy	53(38.7)
Parkinson disease phase:
Initial	29(21.2)
Advanced	94(68.6)
Final	14(10.2)
Education level:
Elementary	9(6.6)
Lower middle	21(15.3)
Diploma	67(48.9)
Degree	38(27.7)
PhD	2(1.5)
How long have you been a caregiver?
Up to 1 year	22(16.1)
-10 years	43(31.4)
> 10 years	72(52.6)
Daily hours of care provided:
Up to 12h	82(59.9)
From 12h to 24h	55(40.1)
Degree of relationship to the person with PD:
Grade	66(48.2)
II grade	6(4.4)
Spouse	65(47.4)
Did you receive training before caring for the person with PD?
No	128(93.4)
Yes	9(6.6)
Has being a caregiver changed your life in the social sphere?
No	4(2.9)
Yes	133(97.1)
Has being a caregiver changed your life at work?
No	40(29.2)
Yes	97(70.8)
Zarit’s scale - assessment of material and emotional load:
Weak	28(20.4)
Light weight	40(29.2)
Moderate	38(27.7)
Strong	31(22.6)

Table I. Socio-demographic characteristics on caregivers enrolled (n = 137).

Variables	n (%)
Gender:
Female	105(76.6)
Male	32(23.4)
Marital status:
Married, cohabiting	118(86.1)
Not committed (divorced, separated, single)	19(13.9)
Age (y):
< 40	15(10.9)
41-50	30(21.9)
51-60	39(28.5)
> 61	53(38.7)
Employment status:
Occupied	84(61.3)
Not busy	53(38.7)
Parkinson disease phase:
Initial	29(21.2)
Advanced	94(68.6)
Final	14(10.2)
Education level:
Elementary	9(6.6)
Lower middle	21(15.3)
Diploma	67(48.9)
Degree	38(27.7)
PhD	2(1.5)
How long have you been a caregiver?
Up to 1 year	22(16.1)
-10 years	43(31.4)
> 10 years	72(52.6)
Daily hours of care provided:
Up to 12h	82(59.9)
From 12h to 24h	55(40.1)
Degree of relationship to the person with PD:
Grade	66(48.2)
II grade	6(4.4)
Spouse	65(47.4)
Did you receive training before caring for the person with PD?
No	128(93.4)
Yes	9(6.6)
Has being a caregiver changed your life in the social sphere?
No	4(2.9)
Yes	133(97.1)
Has being a caregiver changed your life at work?
No	40(29.2)
Yes	97(70.8)
Zarit’s scale - assessment of material and emotional load:
Weak	28(20.4)
Light weight	40(29.2)
Moderate	38(27.7)
Strong	31(22.6)

Table II. Spearman correlations between Zarit scores and socio-demographic variables.

	Gender	Marital status	Age	Employment status	Parkinson disease phase	Education level	Time	Assistance provided/day	Degree of relationship	Training received	Social life	Working life
Zarit Rho
p	- .030	.261	-.116	-.139	.194	.121	.037	.006	.018	-.005	-.209	-.362
	.728	.002*	.178	.104	.023*	.160	.666	.946	.839	.950	.014*	<.001*
*p < .05 is statistically significant.

Table II. Spearman correlations between Zarit scores and socio-demographic variables.

	Gender	Marital status	Age	Employment status	Parkinson disease phase	Education level	Time	Assistance provided/day	Degree of relationship	Training received	Social life	Working life
Zarit Rho
p	- .030	.261	-.116	-.139	.194	.121	.037	.006	.018	-.005	-.209	-.362
	.728	.002*	.178	.104	.023*	.160	.666	.946	.839	.950	.014*	<.001*
*p < .05 is statistically significant.

Table III. How significant correlations varied among caregivers.

Variables/Zarit levels	Weak	Lightweight	Moderate	Strong	Total
Marital status:
Committed	27(19.71)	37(27.01)	32(23.36)	22(16.06)	118(86.13)
Not committed	1(.73)	3(2.19)	6(4.38)	6(4.38)	19(13.87)
Parkinson disease phase:
Initial	10(7.3)	10(7.3)	5(3.65)	4(2.92)	29(21.17)
Advanced	15(10.95)	28(20.44)	28(20.44)	23(16.79)	94(68.61)
Final	3(2.19)	2(1.46)	5(3.65)	4(2.92)	14(10.45)
Social life:
No	3(2.19)	1 (.73)	0(0)	0(0)	4(2.92)
Yes	25(18.25)	39(28.47)	38(27.74)	31(22.6)	133(97.08)
Work life:
No	18(13.14)	10(7.3)	9(6.57)	3(2.19)	40(29.20)
Yes	10(7.3)	30(21.89)	29(21.17)	28(20.44)	97(70.80)

Table III. How significant correlations varied among caregivers.

Variables/Zarit levels	Weak	Lightweight	Moderate	Strong	Total
Marital status:
Committed	27(19.71)	37(27.01)	32(23.36)	22(16.06)	118(86.13)
Not committed	1(.73)	3(2.19)	6(4.38)	6(4.38)	19(13.87)
Parkinson disease phase:
Initial	10(7.3)	10(7.3)	5(3.65)	4(2.92)	29(21.17)
Advanced	15(10.95)	28(20.44)	28(20.44)	23(16.79)	94(68.61)
Final	3(2.19)	2(1.46)	5(3.65)	4(2.92)	14(10.45)
Social life:
No	3(2.19)	1 (.73)	0(0)	0(0)	4(2.92)
Yes	25(18.25)	39(28.47)	38(27.74)	31(22.6)	133(97.08)
Work life:
No	18(13.14)	10(7.3)	9(6.57)	3(2.19)	40(29.20)
Yes	10(7.3)	30(21.89)	29(21.17)	28(20.44)	97(70.80)