Dementia is one of the major public health challenges in older adults and is most commonly caused by Alzheimer's disease (1). In 2015, almost 50 million people worldwide were living with dementia (2). According to Alzheimer Europe (3), the incidence of dementia syndrome is alarming and is estimated to double by 2050 mainly among people over the age of 65. This also applies to Slovakia, where the estimated number of dementia patients is 62,495 representing 1.15% of the population. In 2018, the estimated prevalence of dementia was highest among men from 80 to 84 years (3,370 persons) and women from 85 to 89 years of age (9,740 persons) in Slovakia (3).

A person living with dementia (PLwD) is fundamentally affected by a progressive and irreversible cognitive deficit (4), with a wide range of neuropsychiatric symptoms including delusions, hallucinations, insomnia, somatic complaints, and functional impairments. However, dementia syndrome affects not only the PLwD but also relationships with informal caregiver(s), i.e., their relatives, partners, or close friends (5). During the disease progression, changes in thinking and behavior are not only the result of pathology in the brain but are sometimes more complex expressions of feelings, experiences, and personality, which in many cases results in communication misunderstandings (6). Informal care presents a huge challenge for families and friends of PLwD (1).

“A multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience” was defined as a caregiver burden [(7); p. 119]. While the objective caregiver burden refers to the amount of time spent on caregiving and the tasks that are performed, the subjective burden indicates how the informal caregivers experience performing their caregiving tasks and may refer to the physical, psychological, emotional, social, and/or financial consequences of caregiving (8, 9). Studies on caregiver burden related to caring for PLwD highlight its negative effect on physical (10) as well as on mental health (11), (12). Moreover, low levels of knowledge, health beliefs, and attitudes toward health (risk reduction) play also an important role in participating caregivers in health-promoting and disease-preventive actions which can decrease the negative impact of caregiving burden on their health (13–15). Due to its multidimensional construction caregiver burden is seen as a complicated concept that is not always static (16).

According to previous studies, social support is recognized as one of the mediators of caregiver burden (17). Two dimensions of social support are distinguished in the literature, perceived and received social support. Perceived social support is the perception of the extent and quality of support an individual receives from his or her social network. It is fulfilled through social relationships, when, thanks to affective support, it helps to reduce the psychological burden of the caregiver of a PLwD (18). It is therefore essential that the individual family members of the PLwD support each other. Especially when reorganizing their lives in crises are very emotionally stressful. Clear and open communication during this process strengthens resilience, which in turn contributes to family adaptation (19). Received social support is defined as an objective quantification of the help and support people receive from their social network (18, 19). Connors et al. (20) reported that those who use a home care professional service have a lower caregiver burden than to those who do not. Contrary to this, Wang et al. (21) found that those clients who used outreach services were more dependent in daily living activities and therefore their informal caregivers had a higher burden. The results of a meta-analysis by Del-Pino-Casado et al. (22) comparing 46 studies on perceived social support and 16 studies on received social support confirmed the existence of a negative relationship between perceived social support and subjective caregiver burden and a very small negative relationship between received social support and subjective caregiver burden. Research has also found that perceived social support is a stronger predictor of individual wellbeing than received social support because it is closely related to personality traits such as optimism and self-confidence (23, 24).

The nature of the caregiving experience can be positive or negative. If the caregiving experience is perceived positively, it can lead, for example, to increase self-esteem or improve relationships. One of the positive aspects of caregiving is that the informal caregiver feels useful and satisfied (25). Caregiving is also perceived as less stressful when the relationship between caregiver and care recipient is filled with love (26) and when the caregiver's resources and needs are balanced (27). A positive perception of caregiving is related to life satisfaction (28).

It is already known that for the development of social support and strengthening of a positive caregiving experience psychosocial interventions oriented toward building appropriate coping strategies can be effective (29). In addition, these interventions can focus also on psychoeducation in the area of communication with PLwD, for example by applying the method of reminiscence (30) or validation (31). Both techniques are aimed at neuropsychiatric symptoms of dementia and belong to emotion-oriented care in dementia (32, 33). Validation can also have a stress-reducing potential (34). According to available literature, the relationship between the caregiving burden and applying validation has not yet been investigated in informal caregivers of PLwD.

Despite the fact that the caregiver burden is related to the negative or positive feelings and perceptions of the caregiver associated with providing care, there is more literature on the negative impact of caregiving (16). Therefore, by using a theoretical model-based approach (e.g., stress-appraisal models of caregiver wellbeing) more complex mediating and moderating relationships between caregiver wellbeing and burden can be uncovered (35). The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods.

This study aimed to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods.

A high caregiver burden was found in more than half of the informal caregivers of PLwD in our study sample. Previous studies have revealed that the prevalence of high levels of burden in informal caregivers of PLwD is about 20%, with a further 58% of caregivers at increased risk of distress (45). In our sample, more than half of the respondents had a university degree and were employed. Current trends predict a future increase in employment among informal caregivers, especially wives and daughters of older persons (46). The majority of informal caregivers in our sample were women (81.7%), similar to many other countries (26, 47). Compared to men, a higher burden was identified in women in the previous studies, while our study did not show gender differences in perceived caregiver burden. This result may also be caused by the low number of male participants included in our study.

We found a strong association between higher positive caregiving experience and lower subjective caregiver burden, even after controlling for age, gender, and education. Our findings and the findings of other authors (48) on significant associations of a lower subjective caregiver burden in informal caregivers of PLwD and with a higher positive caregiving experience are supported also by the study of (Brand et al. (23). They demonstrated an association between higher social support and higher levels of optimism, which had associations also with a sense of value, ability to care, and caregiver satisfaction. Similar associations of positive caregiving experience in informal caregivers of PLwD with both objective and subjective burden, avoidance coping, and perceived social support were found in Grover et al. study (49), in which other measurement tools were applied including the Burden Interview Schedule, the Social Support Questionnaire, and the Scale for Positive Aspects of Caregiving Experience.

Multiple linear regression analyses also identified a strong association between higher percieved social social support and lower subjective caregiver burden. Our findings regarding associations of a lower subjective caregiver burden in informal caregivers of PLwD with a higher rate of perceived social support are in line with the study of Yu et al. (48). The negative association between subjective caregiver burden (as measured by the ZBI) and perceived social support (as assessed by the Multidimensional Scale of Perceived Social Support) was demonstrated also by Putir et al. (50) on a larger sample consisting of 207 informal caregivers of PLwD aged 60 years and over and by Abdollahpour et al. (51).

Multiple linear regression analyses showed a weak but significant association between higher caregiving intensity and subjective caregiver burden. The study of Yu et al. (48) confirmed that a higher level of caregiving burden was significantly associated with a higher caregiving intensity. Controlling for the demographic variables of the caregivers, [Cao and Yang (9)] also found that subjective and objective dementia caregiving burdens were significantly associated. Furthermore, other authors (29) demonstrated that caregiving intensity has a non-linear relationship with caregiving burden. However, they investigated the response to the caregiving intensity with an open-ended question: “How many hours a day do you spend caring for a family member with dementia?” Based on responses from 637 respondents they found that if the hours of care reach a certain range, i.e., 14 h per day, the level of caregiver burden is high (measured by the ZBI-12), but for the range of care over 14 h per day, more hours of care meant a lower burden level. In our sample, where the caregiving intensity was measured at three intervals (≤ 8, 9–39, >40 h per week), more than half of the respondents provided care for more than 40 h per week, which corresponds to at least 5.7 h a day. The time spent in informal caregiving can be also considered and may limit informal caregivers in recreational or social activities (52), especially in the absence of opportunities for respite care. It is already known, that up to 41% of informal caregivers experienced an increase in caregiving burden due to the COVID-19 pandemic. Regression analysis results confirmed that factors such as the duration and intensity of caregiving were related to increasing caregiving burden during the COVID-19 pandemic in the Japanese study of Otobe et al. (53).

Our analyses did not show a statistically significant difference in the level of subjective caregiver burden between those who applied vs. did not apply the communication methods (reminiscence and validation according to Naomi Feil). As the validation has not yet been investigated in relation to the caregiver burden of PLwD as an independent intervention, the findings from multi-component psychosocial interventions (54) are available only, who investigated the caregiver burden and stress among 104 informal caregivers. While, the assumption about significantly decreased caregiver burden 1, 3, and 6 months post-intervention was not confirmed, the perceived stress was significantly reduced only after 6 months. Almost all respondents found validation particularly helpful in managing the behavioral challenges associated with dementia (54). These findings support the original hypothesis by Feil (1992 in Canon (55), p. 12) who stated that the validation “reduces stress and frustration in caregivers in social care facilities by improving interpersonal communication and developing a more meaningful relationship with the person with dementia.” Other three studies investigated the effect of multi-component and emotion-oriented interventions, including validation, and were devoted to increasing satisfaction and reducing stress symptoms in professional workers in health and social services (33, 56, 57). Another three studies (58–60) investigated the effects of validation, but none of them measured caregiving burden as a dependent variable. In general, many multicomponent studies reported a positive impact on caregivers especially in self-efficacy, burden, and depressive symptoms. However, the single-component psychoeducational interventions solely focusing on one strategy were rather not effective. This does not mean that these strategies should not be undertaken, but rather that they need to be embedded into more extensive interventions (61).

The significant associations of lower caregiver burden with a higher perceived social support and a higher positive caregiving experience reinforce the need for interventional public health programs aiming to decrease the overall imposed burden. It can be achieved through implementing psycho-social and educational interventions focused on emotions, especially in those caregivers with higher caregiving intensity. Such programs may strengthen social support, maintain positive perceptions of caregiving, and help to reduce the risk of caregiver burden in informal caregivers of PLwD.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by Ethics Committee of the Faculty of Medicine, Pavol Jozef Safarik University in Kosice (No. 1N/2021). The participants provided their written informed consent to participate in this study.

MN: writing—original draft, conceptualization, and methodology. ZK: supervision, conceptualization, methodology, data curation, writing—review and editing, and funding acquisition. IN: supervision, methodology, data curation, formal analysis, visualization, writing—review and editing, and funding acquisition. All authors refined the manuscript for submission, read it, and approved the final version of the manuscript.