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Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study

Author

Listed:
  • Sally C. Duplantier

    (Department of Counseling and Educational Psychology, School of Education, Indiana University, 201 Rose Avenue, Bloomington, IN 47405, USA)

  • Francesca A. Williamson

    (Department of Pediatrics, School of Medicine, Indiana University, 340 W. 10th Street, Fairbanks Hall, Suite 6200, Indianapolis, IN 46202, USA)

Abstract

Background: Given the dramatic projected increase in Alzheimer’s disease globally and the increased risk of morbidity and mortality for family caregivers of these patients, there is an urgent need to provide more targeted, timely resources to support the health and well-being of these informal caregivers. Few studies have investigated the barriers to health and well-being and potential strategies to facilitate better self-care from the unique perspective of the caregivers themselves. Purpose: This qualitative study aimed to identify barriers and facilitators to health and well-being for informal caregivers of family members with Alzheimer’s. Method: We conducted semi-structured interviews with eight informal caregivers, including daughters, wives, and one husband, ages 32 to 83. Using Reflexive Thematic Analysis, we identified three main themes and subthemes across caregivers’ experiences. Findings: We found that caregivers (1) prioritized mental and social well-being over physical health or health behaviors; (2) characterized the subjective burden of caregiving as a “mantle of responsibility” that could not easily be shed due to the complex subjective burden of loss, grief, guilt, resentment, isolation, loneliness, and lack of agency; (3) sought to be recognized as “additional patients”, instead of being viewed as invisible patients, with support services tailored to their life stage and challenges. Conclusions: The findings suggest that the subjective burden of strain experienced by family caregivers of Alzheimer’s patients has a profound impact on their health and well-being, even more so than the objective burden of strain that is the result of their day-to-day caregiving activities.

Suggested Citation

  • Sally C. Duplantier & Francesca A. Williamson, 2023. "Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study," IJERPH, MDPI, vol. 20(5), pages 1-17, February.
  • Handle: RePEc:gam:jijerp:v:20:y:2023:i:5:p:4328-:d:1083417
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    References listed on IDEAS

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    1. Anna Messina & Rebecca Amati & Emiliano Albanese & Maddalena Fiordelli, 2022. "Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point," IJERPH, MDPI, vol. 19(12), pages 1-18, June.
    2. Yanchun Cao & Fan Yang, 2020. "Objective and Subjective Dementia Caregiving Burden: The Moderating Role of Immanent Justice Reasoning and Social Support," IJERPH, MDPI, vol. 17(2), pages 1-11, January.
    3. Alba Pérez-González & Josep Vilajoana-Celaya & Joan Guàrdia-Olmos, 2021. "Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief," IJERPH, MDPI, vol. 18(16), pages 1-15, August.
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