Psychological distress among family caregivers of persons with Alzheimer’s disease and related dementias in Uganda – BMC Geriatrics

This cross-sectional study aimed to investigate psychological distress and associated factors, such as depression and Quality of Life (QoL), among family caregivers of patients with ADRD in Uganda. We conducted a study on 90 caregivers of patients with ADRD in Wakiso, Uganda, to provide invaluable information regarding their demographic profiles and psychological experiences. The majority of participants were female (82.2%), with a median age of 52 years for females and 35 years for males. The study also found that single female caregivers accounted for 48.0% of the group, whereas married males accounted for 56.3%. Male educational attainment was skewed towards secondary levels, whereas females had a higher prevalence of primary or lower education. The study further highlighted the socioeconomic constraints and health challenges faced by this caregiving group, including comorbidities such as HIV and UTIs, and sources of income. The study further discovered that psychological distress affected 64.4% of caregivers, and quality of life scores were nearly even, emphasizing that significant toll caregiving takes on individuals and the need for attention to both the economic and psychosocial dimensions of caregiver support.

Prevalence of psychological distress and depression

The findings of our study, which indicate a high prevalence of psychological distress (64.4%) and depression (64.4%) among caregivers, are consistent with the existing literature on the impact of caregiving on mental health [7]. The results of our research highlight a crucial and often-overlooked aspect of the ADRD caregiving experience, particularly in low- and middle-income settings such as Uganda. The significant proportion of caregivers who reported symptoms of psychological distress and depression (64.4%) highlighted a substantial mental health challenge within the Wakiso community. This prevalence is consistent with previous research in different settings, underscoring the significant psychological toll that caregiving can have on individuals [7].

Furthermore, the high comorbidity of psychological distress and depression among caregivers highlights the multifaceted nature of their burden. Caregivers not only face the emotional strain of witnessing the progressive decline of their loved ones but are also subject to the tangible hardships of providing care, often in environments with limited resources and support [21,22,23]. The confluence of these challenges is potentially detrimental, increasing caregivers’ susceptibility to mental health issues. Ashrafizadeh et al. [7] highlight the diverse sources of stress experienced by caregivers, including the physical demands of caregiving, the emotional challenge of dealing with behavioral symptoms of ADRD, and the economic strain of shouldering medical costs. Brodaty and Donkin [8] further noted that in the absence of adequate support structures, these sources of stress are likely to coalesce, intensifying the risk of psychological distress and depression among caregivers.

Gender differences

A significant proportion of the participants were females (82.2%). This highlights the traditional caregiving role that women often shoulder, particularly in LMICs [24]. Despite the gender skew, the study did not find significant disparities in Quality of Life, Psychological Distress, or depression between the genders. This possibly indicates that the act of caregiving, not gender, is the primary driver of the psychological challenges faced. That said, socioeconomic conditions affecting genders differently, such as females predominantly relying on relatives for income and males relying on business activities, might intersect with caregiving roles in subtle, yet crucial ways.

Quality of life & age

Contrary to expectations, this study did not find a statistically significant association between age and Quality of Life (QoL). The results indicated that age, whether lower or higher, did not significantly impact QoL among the caregivers. This suggests that the challenges impacting caregivers’ QoL may be more universally experienced across different age groups rather than being particularly pronounced in younger caregivers. While previous research has highlighted the dual stress faced by younger caregivers in balancing caregiving responsibilities with their personal and professional lives [4, 23, 25, 26], our findings suggest that this stress does not significantly differentiate QoL across age groups. This may indicate the need to consider factors other than age when addressing QoL among caregivers. Quality of Life & Age: Interestingly, this study found a lower age to be associated with a decrease in QoL. This implies that younger caregivers, possibly in their prime working years, face the dual stress of caregiving and managing their personal and professional lives. This aligns with the hypothesis that caregivers’ QoL is inversely correlated with distress. Furthermore, this finding aligns with existing literature. For instance, research has shown that younger caregivers often experience the dual stress of managing their caregiving responsibilities along with their personal and professional lives [4, 23, 25, 26]. This could be particularly challenging during their prime working years as career development and personal growth are crucial.

Children and psychological distress

The finding that having children is linked to decreased psychological distress is intriguing and noteworthy in a caregiving context. Initially, one might assume that having children equates to increased support and reduced stress levels. However, the dual responsibility of caregiving for loved ones and parenting can be overwhelming, resulting in increased stress. Folkman and Lazarus [27] identified role conflicts as a source of stress, as individuals struggling to balance competing demands. Pearlin et al. [28] demonstrated that caregivers who take on multiple roles are susceptible to role strain, leading to feelings of inadequacy and heightened psychological distress. Given the complexity of caregiving and the need to attend to the needs of multiple children, caregivers of more children may be particularly vulnerable to this strain.

Our results suggest that having children is associated with a significantly lower risk of psychological distress among caregivers (Adjusted OR 0.09, 95% CI: 0.01–0.67, p = 0.019). This finding is crucial, as it highlights the protective effect of having children against psychological distress, in contrast to the potential increased burden of managing multiple roles. Additionally, having children was associated with better quality of life (QoL) for caregivers, possibly due to the support that children can provide, which can alleviate some of the caregiving burden [29]. Moreover, psychological distress is significantly associated with poorer QoL, highlighting the interconnectedness of these factors [19].

Interestingly, having children was also found to predict a lower risk of depression among caregivers. This nuanced finding suggests that, while the presence of children can provide significant emotional and practical support, the overall number of children might still influence the level of psychological distress experienced by caregivers. This complexity underscores the need for further research to explore the balance between caregiving demands and the support provided by children in different caregiving contexts.

Strengths and limitations

This study offers a fresh perspective on a previously under-researched demographic. The use of purposive sampling and standardised scales with proven internal consistency underpins the strengths of this study. However, this methodology has some limitations. While purposive sampling can provide targeted insights, it does not necessarily imply rigor, particularly in quantitative studies, and may introduce a selection bias. The sample size of 90 participants, though justified by its depth and focus, may limit the generalisability of the findings and require further validation in larger samples. Additionally, the cross-sectional nature of this study prevented causal inferences. The focus on one district, although detailed, may not be representative of the entire Ugandan context.

Implications for policy and practice

The results have profound implications for the development of healthcare policies and support services in Uganda and similar LMIC settings. There is a pressing need for structured caregiver support systems that incorporate mental health screenings, counselling services, and community-based respite care programs. Given the gendered nature of caregiving, gender-responsive interventions that recognize the unique challenges faced by male and female caregivers could be beneficial. While the study provides valuable insights into the experiences of caregivers in this district, further research incorporating larger and more diverse samples and longitudinal designs is needed to validate and expand these results. Policymakers and practitioners should use these findings as a foundation for more extensive studies that can inform broader and more generalisable policies and interventions.