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

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.

Experiences of family caregivers taking care getting lost of persons with dementia: a qualitative study

“…The research results of Connors et al [ 34 ] showed that family caregivers without support or assistance had a higher care load. Over time, family caregivers become additional people and suffer as much as persons with dementia [ 35 ].…”

“…In a study by Peng et al [ 39 ], foreign care workers improved the mental fatigue of family caregivers when persons with dementia were lost outside the home. Moreover, family caregivers can receive substantial help from family members and other social groups, which could reduce the burden of caring for persons with dementia and shared care tasks, allowing family caregivers to obtain respite services [ 35 ].…”

Experiences of Family Caregivers Caring for Patient with Alzheimer’s Disease: A Hermeneutic Phenomenological Study

“…10 Undoubtedly, caring for Alzheimer's is challenging and demanding that may lead to the occurrence of difficulties including physical, emotional, and mental exhaustion among caregivers. 11 It is estimated that two-thirds of people with AD live and are cared for by their families worldwide. 12 Specifically in Indonesia, where there are strong traditions of filial piety that demand the Indonesians to respect their family members and take responsibility to care for them when they get old.…”

The experiences of caregiving and the coping strategies of informal caregivers of people with major neurocognitive disorders.

“…A study by Baptista et al (2018) on informal caregivers of people with MNCD found that caregivers' coping was influenced by the stages of the disease, meaning caregivers used different coping styles at different times. For example, some caregivers experienced emotional distress immediately after the diagnosis of MNCD in their close relative (Duplantier & Williamson, 2023), whereas other caregivers showed poor coping and depressive symptoms as the disorder progressed to the severe stages and as the period of care increased. The caregivers who used more dysfunctional coping strategies were reported to experience increased caregiver burden (Baptista et al, 2018;Duplantier & Willaimson, 2023).…”