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

Aug 27, 2026

The study examines how family stigma and socioeconomic conditions shape psychological outcomes, quality of life (QoL), and caregiver burden among 150 caregivers of Alzheimer’s disease and frontotemporal dementia patients with early- and late-onset forms. Caregivers of early-onset Alzheimer’s disease showed more frequent socioeconomic risk factors, while frontotemporal dementia caregivers reported higher family stigma and more negative outcomes. Family stigma emerged as the most suitable predictor after adjusting for dementia type, stage, behavioral changes, and caregiver age and education.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages11

Reading Time28 min

AccessFree to download

Materials and methods

Design

Measures and outcomes

UCSF UC San Francisco Previously Published Works Title Analysis of family stigma and socioeconomic factors impact among caregivers of patients with early- and late-onset Alzheimer's disease and frontotemporal dementia Permalink [https://escholarship.org/uc/item/83h3k389](https://escholarship.org/uc/item/83h3k389) Journal Scientific Reports, 12(1) ISSN 2045-2322 Authors Velilla, Lina Acosta-Baena, Natalia Allen, Isabel et al. Publication Date 2022 DOI 10.1038/s41598-022-16400-2 Copyright Information This work is made available under the terms of a Creative Commons Attribution License, available at [https://creativecommons.org/licenses/by/4.0/](https://creativecommons.org/licenses/by/4.0/) Peer reviewed [eScholarship.org](eScholarship.org) Powered by the California Digital Library University of California [www. nature.com/scientificreports](www. nature.com/scientificreports) OPEN Analysis of family stigma and socioeconomic factors impact among caregivers of patients with early‑ and late‑onset Alzheimer’s disease and frontotemporal dementia Lina Velilla1,2*, Natalia Acosta‑Baena1, Isabel Allen3, Francisco Lopera1,4 & Joel Kramer2,4 To the best of our knowledge, there are no research studies about socioeconomic factors, family stigma, and their psychological impact on early‑onset dementia caregivers. We assessed the impact of family stigma and socioeconomic factors on psychological outcomes, quality of life (QoL), and caregiver burden among 150 caregivers of patients with early‑onset Alzheimer’s disease due to E280A mutation in presenilin 1 (EOAD), frontotemporal dementia (FTD), and late‑onset Alzheimer’s disease (LOAD). Caregivers of patients with EOAD presented a higher frequency of socioeconomic risk factors. Caregivers of FTD presented higher levels of family stigma and a higher prevalence of negative outcomes. We found family stigma to be a more suitable predictor of all outcomes. After adjusting for the type of dementia, dementia stage and behavioral changes, and caregiver age and education, family stigma was the most important factor associated with a higher risk of caregiver burden and a reduction in QoL in terms of energy fatigue and emotional wellbeing among early‑onset dementia caregivers. The evidence gathered on caregiver burden has been conducted primarily on caregivers of late-onset dementia. These studies have found that caregivers have a high risk of burden, anxiety, depression, and reduced QoL. The risk increases with socioeconomic factors such as low income, lack of community-based long-term care services, unemployment, and low education1. According to a few mixed qualitative and quantitative studies on late-onset dementia, family stigma has significant associations with increased caregiver burden, caregiving stress, social isolation, and decreased help2,3. These challenges are complicated by the particular circumstance of caring for loved individuals with early-onset Alzheimer’s disease or other early-onset dementias with a genetic component such as frontotemporal dementia (FTD) while at risk of developing the illness oneself. To the best ofour knowledge, there are no research studies about socioeconomic factors, family stigma, and their impact on early-onset dementia caregivers. Hence, we aimed to fill this gap by assessing the effect that those factors have on caregiver burden, QoL, and emotional wellbeing in family caregivers of patients who belong to the largest worldwide cohort of EOAD due to the E280A mutation in presenilin 1 and patients with frontotemporal dementia (FTD) who are positive for other specific mutations. Stigma has been understood as an adverse reaction and misinterpreted perception toward a negatively evaluated difference4, which has a deeply deleterious effect on the mental health of labeled individuals5. When individuals accept and internalize the stigma, they experience a misinterpretation and devaluation of themselves called s

FAQs

What factors are analyzed in relation to caregiver burden and quality of life?

The study evaluates family stigma and socioeconomic factors and their psychological impact, including caregiver burden and quality of life among dementia caregivers.

How did caregiver groups differ across dementia types?

Caregivers of early-onset Alzheimer’s disease showed more socioeconomic risk factors, while frontotemporal dementia caregivers reported higher family stigma and a higher prevalence of negative outcomes.

Which predictor was most strongly associated with negative caregiver outcomes?

After adjusting for dementia type, stage, behavioral changes, and caregiver demographics, family stigma was the most important factor associated with higher caregiver burden and reduced QoL, particularly energy/fatigue and emotional wellbeing.

Aug 27, 2026

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