Associations among family stigma, type of dementia, caregiver burden and other negative psychological outcomes

• Published in: Alzheimer's & dementia Vol. 16
• Main Authors: Velilla, Lina M, Acosta‐Baena, Natalia, Calle, Andres, Allen, Isabel Elaine, Lopera, Francisco, Kramer, Joel H
• Format: Journal Article
• Language: English
• Published: 01.12.2020
• ISSN: 1552-5260; 1552-5279
• DOI: 10.1002/alz.045381

Background There is very little research about the impact of family stigma and the type of dementia on the mental/physical health, and Quality of life (QoL) in early‐onset Alzheimer's disease (EOAD) and Frontotemporal dementia (FTD) caregivers. Thus, we aimed to address the question of whether family stigma and the type of dementia are predictors of depression, QoL and caregiver burden. Methods This is an analytical study with a cross‐sectional design. 140 Participants who are family caregivers of patients with the diagnosis of EOAD, FTD and late‐onset AD (LOAD) completed questionnaires about family stigma, caregiver burden (Zarit Burden), depression (CES‐D), anxiety (STAI), and QoL (SF36). Multivariable linear regression models were used with LOAD as a reference category to examine associations between depression, QoL and caregiver burden as outcomes predicted by family stigma and type of dementia. Results After adjusting by age and patient’s dementia stage, the cognitive component of family stigma (Cog‐stigma) and type of dementia were good predictors of role limitations due to emotional problems (EOAD type b= ‐0,34 p<0,001; FTD type b= ‐0,36 p<0,001; Cog‐stigma b= ‐0,23 p<0,001), general health performance (FTD type b= ‐0,25 p=0,007; Cog‐stigma b= ‐0,34 p<0,001), energy/fatigue (EOAD type b= ‐0,27 p=0,003; FTD type b= ‐0,27 p=0,001; Cog‐stigma b=0,38 p<0,001), emotional wellbeing (EOAD type b= ‐0,28 p=0,004; Cog‐stigma b= ‐0,38 p<0,001), depressive mood (EOAD type b= 0,22 p= 0,028; Cog‐stigma b= 0,35 p<0,001), and depression (EOAD type b=0,24 p=0,018; Cog‐stigma b= 0,35 p<0,000). The Cognitive aspect of stigma was a good predictor of role limitation due to physical problems (b= ‐0,31 p<0,001) and caregiver burden (b=0,51 p<0,001). Conclusions The cognitive aspect of stigma (negative self‐attribution about the caregiver role or the own perception of been treated as less worthy by others) and the type of dementia are significant predictors of higher caregiver burden, greater depression and reduced QoL among caregivers. The EOAD caregivers showed a higher occurrence overall of negative caregiver outcomes. Family stigma should be addressed as a potential risk factor for both emotional and physical health among caregivers and as a potential factor that increases the burden among early‐onset dementia caregivers.