Caring for a family member with early stage alzheimer’s disease: caregiver perceptions, connections, and relational dynamics with the sacred

ABSTRACT

Researchers have conceptualized spirituality as the search for or connection with the sacred – or that which is considered blessed, holy, or revered by each individual. Some perceive the sacred as their relationship with a divinity (e.g., God, gods, Higher Power). Others consider the sacred to be something bigger than themselves (e.g., the Universe, Nature, guiding life philosophy). The self may also be considered sacred by some. The current research suggests that family caregivers of persons with Alzheimer’s disease and related dementias (ADRD) with strong connections with the sacred have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. This research, however, does not take into consideration the stage of ADRD that a caregiver’s loved one is in, which may be an important factor. In this study, we were interested in learning more about caregivers’ conceptualizations of the sacred at the beginning of their caregiving journey. Twenty-seven family caregivers of persons with early-stage ADRD (CDR = 1) were interviewed using the Dimensions of Caregiving Interview (DCI). Thematic Analysis was utilized as our methodology. Findings revealed several themes: 1) There is diversity in conceptualizations of the sacred among caregivers; 2) Caregivers perceive the sacred as having distinct characteristics, traits, and functions; and 3) The nature of the relationship with the sacred can be important to adaptation in the early-stages of the caregiving journey. Recommendations for practice and future research are provided.

KEYWORDS:

• Alzheimer’s disease
• dementia
• caregiving
• religion/religiosity
• spirituality

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This study was approved by the Baylor University IRB, Protocol #346183-1, and the Baylor College of Medicine IRB, Protocol #H27755.