Analysis of family stigma and socioeconomic factors impact among caregivers of patients with early- and late-onset Alzheimer’s disease and frontotemporal dementia

Our study aimed to identify whether family stigma, patient clinical futures, and socioeconomic factors are associated with lower levels of QoL and a higher presence of depressive symptoms, anxiety, and caregiver burden among dementia caregivers. We also estimate the risk (OR) of presenting negative caregiver outcomes due to family stigma controlled by the caregiver’s age, education, patient clinical stage, and behavioral changes. To the best of our knowledge, this is the first study measuring with quantitative methods the risk of negative psychological outcomes due to family stigma and clinical and socioeconomic factors among dementia caregivers analyzed according to the type of dementia and including FTD, EOAD, and LOAD.

We selected to focus this study on early-onset dementia caregivers because they belong to genetic populations at risk of developing EOAD or other forms of early-onset dementia with a genetic component such as FTD. Both EOAD and FTD represent the two main causes of early-onset dementia21 and all of our cases are early-onset dementia caregivers.

Those populations with a family history of early-onset dementia have a high risk of marginalization and discrimination due to the dementia diagnosis, the clinical evolution experienced by the patients, and the challenges that caregiving for early-onset encounters22. This study contributes to understanding family stigma and caregiver outcomes with a different approach based on the specific type of dementia and the patient’s clinical features.

When analyzing socioeconomic features, we found that caregivers of EOAD were the youngest and those who had lower education. EOAD caregivers had a higher frequency of members who had taken care of a relative with dementia in the past, and they presented a higher frequency of not having help at all to provide care to their relative. On the other hand, FTD caregivers were the group that reported counting on paid support to provide care, and a higher frequency of caregivers with private insurance. The EOAD caregiver group relayed mostly on taxable and public insurance. The LOAD group was the group of caregivers with a higher frequency of members living in their own house, while FTD and EOAD lived mostly at the family house. The EOAD group presented with a higher frequency of potential socioeconomic factors; nevertheless, the FTD group had a higher frequency of negative psychological outcomes.

Our findings indicate that caregivers of patients with FTD exhibited the worst results in QoL and all the domains of family stigma. EOAD and FTD caregivers presented a higher caregiver burden, and FTD caregivers had higher levels of anxiety (trait). After adjusting for the patient’s clinical stage and behavioral changes, caregiver age, and education, we found that family stigma was the only predictor associated with worse outcomes. Family stigma decreased the levels of energy and increased fatigue. Similarly, we observed that when family stigma increased, emotional wellbeing was reduced. Stigma was associated with a higher caregiver burden. We estimated the risk of negative outcomes due to family stigma. We found that family stigma significantly increased the risk for all the outcomes associated, except for anxiety traits. After adjusting for potential confounders, family stigma was the variable more capable of explaining the variance in all outcomes assessed.

In summary, our bivariate results show that EOAD presented more socioeconomic aspects of risk for negative caregiver outcomes. Nonetheless, FTD caregivers exhibited a higher level of negative psychological and QoL outcomes and family stigma. When introducing adjustments in the multilinear model, family stigma remains the main factor explaining the variance in the outcomes and increasing the risk of negative psychological and reduced QoL outcomes, regardless of the patient’s clinical stage and type of dementia.

Our results highlight the central role of family stigma in diminishing emotional wellbeing and QoL and increasing caregiver burden. These findings are in alignment with the study of Werner et al.11. They found that 50% of their sample of dementia family caregivers experienced self-stigma as a result of taking care of a relative with dementia AD-like and that the caregivers who experienced higher levels of family stigma presented the highest levels of caregiver burden. The authors confirmed that psychological factors were the main correlates of family stigma. In our study, family stigma was the most important factor associated with a higher risk of caregiver burden, reducing QoL in terms of energy fatigue and emotional wellbeing.

Another study reported findings similar to ours. The authors aimed to analyze how stigma and spiritual coping strategies mediated the associations between patient independence in daily life activities and anxiety, depression, caregiver burden, and the emotional components of QoL. For the case of stigma, they reported that it contributed to more than 40% of the variance in all outcomes, suggesting that the presence of stigma strengthened the harmful impact of the patient´s daily life independence impairment on each negative psychological and QoL outcome23.

Family stigma related to conditions such as dementia increases the burden among family caregivers because usually, they are the only ones in charge of managing the behavior of their relatives with dementia. This situation frequently leads to others’ avoidance toward the caregiver and their family members with dementia24. Such social pressure due to social stigmatization could directly lead to a psychological disturbance among the caregiver. Similarly, isolation, scarce interaction with relatives and friends, embarrassment, and loss of social status are quite common situations and subjective feelings experienced by family caregivers who undergo family stigma25. Such a set of adverse psychosocial experiences has been found to negatively affect family members of persons with Alzheimer’s disease and is related to adverse consequences in a variety of diseases among the general population and for family caregivers25. Levy 2009 reported that stigma toward aging held in younger adulthood increased the risk of cardiovascular events, e.g., congestive heart failures, heart attacks, and strokes, over the next 38 years26.

Weisman de Mamani et al.27 found that caregivers with high levels of stigma presented more emotionally overinvolved (EOI) attitudes and behaviors that may lead the caregiver to be more intrusive, self-sacrificing, and being more prone to be critical or intrusive toward their relative in an attempt to control symptomatic behaviors. Furthermore, they found that high EOI is a potential mediator between family stigma and the psychological factors of the QoL. This finding could be explained because high EOI is linked to lower mental health in caregivers themselves28. The author’s findings suggested that targeting family stigma in psychotherapy could diminish levels of high EOI and indirectly increase caregiver QoL.

The relationship between family stigma and negative psychological outcomes among early-onset dementia caregivers is particularly relevant in the Latin American context due to sociocultural patterns and financial constraints that could impose severe pressure on the caregivers to provide care for their relatives. In previous research that examined the impact of family stigma among caregivers of patients with schizophrenia, it was found that the negative impact of this form of stigma is particularly marked in settings where family cohesion is high, such as happens to cultural patterns in Latinamerica. In many low- and middle-income countries, most people living with brain/mental health diseases live with their families, and they are dependent on them for both economic support and everyday care; hence, the caregivers end up displaying several of the roles occupied by health or social care staff in high-income country settings. This study’s authors reported that stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger patient age, and household education at the secondary school level29. These results emphasize the association between family stigma and socioeconomic, demographic, and disease clinical factors and highlight the need to grow the body of knowledge about this regard in low- to middle-income countries, where caregivers are potentially more exposed to cultural and financial constraints that could represent a higher risk of family stigma and negative psychological outcomes.

Following those findings of the impact of sociodemographic factors on stigma and caregiver wellbeing and burden, we found in our study that most of the caregivers were females. In a previous study, the Alzheimer Association showed that two-thirds of caregivers were women where one-third of whom are daughters30. This characteristic of dementia care is very common in Latin American and other low /middle-income countries31 and, needs to be highlighted and addressed from multiple perspectives due to the impact that it may have on gender equity and women’s access to higher levels of education, income and their role in society. In a previous study was reported that compared to sons, daughters caregivers of AD patientsperformed more caregiving tasks, suffered more guilt about the care they were able to provide, were less likely to accept support from their partners, and were more susceptible to abandon the labor market to care for their parent32.

The Family Caregiver Alliance in 201333 reported that women remain to be the most frequent care provider for dementia relatives; they are who manage the more difficult caregiving tasks and they are the most affected by the consequences of caregiver burden such as an increase in depression, fatigue, anxiety and cardiovascular diseases34. As it is often common in all Latino and low/middle-income countries, in our study females were the main provider of dementia care among all groups. When we evaluated according to dementia type, we did not find differences by gender. Thus, we need to call attention to this finding.

Likewise, another sociodemographic factor that should be addressed further in the future is the dyad caregiver/patient age. Both FTD and EOAD as early-onset caregivers are likely in the same age group as their relatives with the disease. This is an important factor that should be addressed further to understand how it can affect psychological outcomes among caregivers.

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