So close so far. Implications for the care of couple relationships facing dementia.

Abstract

 Introduction and Objectives: This study examined the role of spouses as primary caregivers of individuals with Alzheimer’s-type dementia, with the aim of understanding their perceptions, needs, and challenges throughout the caregiving process.

Methodology: The study was conducted in March 2024 in accordance with the ethical principles of the University of Extremadura. Semi-structured interviews were carried out with five participants who act as informal caregivers for their spouses with dementia. All five individuals with Alzheimer´s disease, as well as four of the caregivers, reside at the Alcalde Antonio Zapata long-term care facility in Los Santos de Maimona (Badajoz). The qualitative analysis was performed in adherence to rigor criteria, including credibility, transferability, dependability, and confirmability.

Results: Findings indicated that an Alzheimer’s diagnosis represents an emotional turning point for caregivers, who must take on new responsibilities and adapt to unfamiliar roles. Male caregivers, in particular, frequently face domestic and caregiving tasks that are atypical for them. As the disease progresses, behavioural and emotional changes in the affected person create complex situations that may lead to caregiver burden, distress, and episodes of tension. The couple’s relationship shifts toward a constant protective role, while the involvement of adult children in care-related decisions may generate discrepancies and additional conflict. Caregivers acknowledged the importance of professional support, although they do not always have the resources or knowledge required to access such assistance.

Conclusions: The study concluded that dementia care must consider the individuality of each couple, shaped by factors such as personality, shared history, and gender roles. In this context, Nursing plays a key role in the early identification of needs, ongoing support, and prevention of caregiver burden. The relevance of qualitative research is underscored as a means to design individualized and effective interventions.