Caregiver burden (CB) refers to the health outcomes that the relatives and the carers of patients who are affected by severe illness face on their own journey in providing informal care throughout the onset and the progression of a particular disease in others (Ransmayr, 2021; Liu et al., 2020; Maguire & Maguire, 2020).
In accordance with the literature data, it emerges from this study that the majority of caregivers of patients with PD are female and elderly (Ransmayr, 2020). The results of the EQ-5D questionnaire showed that males had a better health status on average than females, and, in particular, females suffered more from anxiety and depression. Confirming the reports in the literature, the study showed that caregivers of patients with dementia (Martinez-Martin et al., 2015) had a worse health status, complaining of greater difficulty in carrying out usual activities, suffering more pain and discomfort and anxiety/depression. An important finding from our study concerns cohabitation: cohabiting caregivers show significantly worse health status than non-cohabiting caregivers and present more anxiety/depression. Finally, the importance of factors such as caregiver age, caregiving hours and cohabitation on overall health status (EQ-VAS) was showed.
This result is consistent with a previous study reporting the importance of caregiver age and caregiving hours in determining caregiver burden (Macchi et al., 2020). The HADS questionnaire showed that both males and females were at greater risk of suffering from anxiety disorders than from depression. The same applies to cohabitants and non-cohabitants. Males tended to be more anxious than females. Non-cohabitants tended to be more anxious than cohabitants, probably due to the fact that they cannot constantly control the patient. Finally, cohabitants suffered more from depression than non-cohabitants.
A previous study reported that caregivers of PD patients suffered more from mood disorders and had a worse quality of life than the general population. The affective state was found to be the most influential factor on the caregiver's burden and perceived health (Martinez-Martin et al., 2008). Moreover, the the patient's mood and disability and the severity of the disease as well as the patient's and caregiver's quality of life and the caregiver’s psychological well-being were identified as the most important indicators of burden, showing that PD can impair caregiver well-being (Martinez-Martin et al., 2007).
Caregivers' attachment patterns were analysed using the AAQ questionnaire, which distinguishes subjects into four prototypes: 'secure', 'preoccupied', 'avoidant' and 'fearful'. The questionnaire made it possible to bring out the different attachment styles between spouses and sons/daughters. In fact, according to the degree of kinship, "avoidant" and "fearful" attachment styles were found more in spouses than in sons/daughters.
The attachment theory was aimed to address the development of human personality and the ethological systems, which extend it from the relationship between parents and offspring to the affectional bonds throughout the life course (Ainsworth & Bowlby, 1991). In the light of a mutual influence among individuals and the environment, the adult attachment systems were found as frequently tied to one’s physical health by regulating or mediating emotions, relationships, and behavior (Pietromonaco & Beck, 2019). On the other hand, the early life experiences and a proximal interpersonal security or insecurity in adult relational contexts can rely on distal or ongoing attachment experiences (Fraley & Roisman, 2019).
Following the four-category adult attachment model by Bartholomew and Horowitz (1991), the secure, preoccupied, dismissing, and fearful attachment styles were tested across different cultures (Chui & Leung, 2016; You & Malley-Morrison, 2000), while reflected the role of attachment systems on one’s interpersonal functioning and parental bonding in adulthood (Hoenicka et al., 2022).
A recent longitudinal study on care-seeking styles by Romano et al. (2022) explored the role of caregiving self-efficacy on older parents (i.e., care recipients) without moderate to severe cognitive impairment. Hence, the self-efficacy of adult children as caregivers, with higher anxious or avoidant attachment styles, reflected a constructive and indirect form of care-seeking, which may refer to a cooperative care recipient, it is focused on positive problem-solving, and it includes an help-seeking behavior that is passive or unclear to the caregiver (Gomes et al., 2018; Tateo at al., 2018; Collins & Feeney, 2000; Romano et al., 2022; Sillars et al., 2002). Indeed, the anxious attachment style was found to affect the well-being of caregivers for people with seizure disorders and suggested a complex bond on their relationship quality (Wardrop et al., 2019).
Contrasting attachment orientations of care recipient and caregiver (e.g. anxious versus avoidant), the presence of dyadic relationships involving adult children caring for their older parents, along with the presence of more insecure attachment styles have been found to predict the caregivers’ burden in the context of family caregiving (Romano et al., 2020).
In a longitudinal study of PD patients undergoing Device-Aided Therapies (DAT), higher avoidant attachment styles were found in the caregivers, while the care recipients showed higher anxious attachment styles (Scharfenort et al., 2021).
Moreover, the role of adult attachment styles indicated that the attachment anxiety of caregivers was negatively tied to a greater degree of resolution of PD (Goldberg, 2022).
In cross-sectional studies on caregivers of patients with dementia, the insecure adult attachment styles of the caregiver were tied to a greater burden, anxiety and dysfunctional coping strategies (Cooper et al., 2008), whereby their own secure attachment styles were also associated with lower levels of psychiatric symptoms (Crispi et al., 1997). Given a more in-depth association with the CB, those care recipients who own either premorbid avoidant or anxious–ambivalent attachment styles were more likely to have paranoid delusions or anxiety in dementia, resulting in a greater degree of caregiving burden (Magai & Cohen, 1998). Moreover, higher avoidant attachment levels of the caregiver were tied to increased behavioural problems in the care recipient with dementia, and those were longitudinally linked to the overall well-being of caregivers (Perren et al., 2007).
Whether the filial obligation, namely one’s own sense of duty regarding the caregiving responsibilities towards a significant adult, was shown to increase the CB in those with greater avoidance attachment styles (Lee et al., 2018), the presence of parent fixation in care recipients, their attachment behaviour and the symptoms associated with the progression of dementia were linked to the adult attachment systems and its potential contribution to both the patient/care recipient and the caregiver’s psychological health (Nelis et al., 2014).
A severe level of burden was found with the PQoL Carers questionnaire in 7.7% of the carers who participated in the study. Although female subjects scored higher on average than males, they reported greater life satisfaction in general. From the analysis of the scientific literature, numerous studies have revealed gender differences in caregiving (Carpinelli & Watzlawik, 2023; Carpinelli et al., 2022; Marinaci et al., 2021). Specifically, activations of caregiving bonds have emerged in female caregivers compared to male caregivers. This correlates with the fact that although female caregivers have a higher perceived burden, they are more satisfied on the LF scale. The collected data showed that cohabiting caregivers have a worse quality of life than non-cohabiting caregivers and lower life satisfaction in general.
The presence of burden was found with CBI in 19.2% of the interviewed caregivers. This is actually a relevant finding since CBI encompasses five types of stress factors and a high score indicates an important impact on the caregiver's life, which may be affected in several aspects.
In males, the objective load, describing the burden associated with the restriction of caregiver time (CIB-T), is higher, whereas in females, the social load, describing the perception of role conflict (CIB-D), is higher. In non-cohabitants, the objective load is greater (CIB-T).
We hypothesize that not living with the patient causes greater perceived time restriction for the caregiver, who may have to give up other outside activities in order to travel to the patient's home, while in cohabitants the psychological load is greater, describing the caregiver's perception of feeling cut off from the expectations and opportunities of their peers (CIB-S). The impact on social life due to caregiving has also been highlighted in the literature (Schrag et al., 2006): our data suggest the urgency of a global 'taking charge' that, in the face of the generalised suffering and impasses that accompany the conditions in which PD begins and develops, consider caring for the individual within the contexts of everyday life, acting on the enhancement of resources and aiming to raise the quality of life of all those involved.
Alongside forms of material, economic and welfare support, it is of fundamental importance to accompany each person to find the position most suited to his or her resources and abilities, while at the same time promoting mutuality and the expansion of social ties in the community.
The mean CIB-E score was higher in cohabitants and represented the emotional burden describing the feelings towards the patient. Males had a higher mean score in all FSQ areas. This reflects the gender differences in adaptation and coping strategies also mentioned above.
The mean score of FSQ-AREAOK and FSQ-AREAR did not seem to vary significantly depending on cohabitation. The mean scores of FSQ-AREASR and FSQ-AREAU were higher in the case of non-cohabiting caregivers. This test assesses strain within the family group. It is possible that due to being away from their family members, caregivers perceive more distress and frustration in the adaptation of care as there is no constant daily monitoring of patients needs and requirements.