Does God Work in All Things to the Good of Those Who Love Him? Family Caregivers of Persons with Early-Stage Dementia Share Their Spiritual Struggles

Abstract

Spiritual struggles are distressing thoughts, feelings, or shifts in behaviors pertaining to faith/life philosophy in response to traumatic/stressful experiences. There is limited research on this phenomenon among family caregivers of persons in the early-stages of dementia (PWD). The purpose of this qualitative study, therefore, was to better understand spiritual struggles in this population. Using Interpretative Phenomenological Analysis, we analyzed interviews of 28 caregivers of PWD in the early stages. There were three broad areas for spiritual struggles in their narratives: (1) transpersonal spiritual struggles (e.g., struggles with God or a higher power in the context of caregiving); (2) interpersonal spiritual struggles (e.g., struggles with communities of faith related to the lived experience of being a caregiver of a loved one with dementia); and (3) intrapersonal spiritual struggles (e.g., struggles around beliefs, morality or ultimate meaning related to caregiving). Themes and subthemes under each of these areas are expounded upon. The importance of identifying/addressing spiritual struggles among family caregivers of PWD and areas for future research are highlighted.

Gratitude Predicts Meaning in Life in Family Caregivers of Persons with Alzheimer’s Disease

“…A possible interpretation for our discovery that gratitude strongly predicts meaning in life presence, even in the context of burden, is that gratitude functions as an internal positive psychological asset. The research literature suggests that internal psychological resources such hope [ 18 ] and practicing positive spiritual techniques [ 14 , 15 , 16 , 17 , 48 ] impact meaning in life and one’s sense of purpose in this population [ 48 ]. Gratitude’s beneficial influence on meaning in life may also enhance a caregiver’s coping skills, buffering the impact of caregiving challenges [ 37 ].…”

“…There is some evidence that caregivers who identify as Black or African American tend to have worse physical wellbeing outcomes as compared to their White counterparts, even when their overall psychological well-being may be similar or better [ 12 ]. Conversely, having greater social support [ 13 ], drawing from one’s religious and spiritual beliefs and practices [ 14 , 15 , 16 , 17 ], and hope [ 18 ] can reduce the degree of burden experienced in family caregivers of persons with Alzheimer’s.…”

"Let's just die together, Mom": Family caregivers' responses to caring for elderly people with dementia

“…A previous study reported that caregivers of elderly people believe in the love and the power of God, whereby God will control their lives. They also believe that by caring for older people with dementia they will receive blessings from God (McGee et al, 2022). The spiritual meaning ascribed by caregivers supports them in accepting their role, allowing them to find meaning while providing care and reducing stress (Acton and Miller, 2003;Márquez-González et al, 2012).…”

Hope Mediates Stress to Reduce Burden in Family Caregivers of Persons with Alzheimer’s Disease

“…Research also suggests that wives tend to experience greater burden than husbands [ 19 ]. Perceived social support is a protective factor against burden, based on a recent meta-analysis [ 20 ] as may be spirituality and faith [ 7 , 8 , 21 ].…”

“…Geriatrics 2024, 9, 38 2 of 13 Burden among family caregivers has been associated with physical (e.g., sleep difficulties, cardiovascular disease, reduced immune response, etc. ), emotional (e.g., mental health difficulties), social and lifestyle changes (e.g., relationship challenges, lower social engagement) [5,6], and spiritual struggles [7,8]. Based on meta-analyses, prevalence rates of thirty-one percent for depression [9] and forty-two percent for anxiety [10] have been predicted among caregivers of persons with dementia.…”