The Transition to Caregiver in Advanced Alzheimer's Disease: From Emotional Connection to Care Responsibility—A Grounded Theory Approach.

Background: The progression of Alzheimer's Disease (AD) deeply affects not only the diagnosed person but also their close relatives, who are often called to take on the role of informal caregivers. This transition is frequently unplanned and emotionally complex, yet poorly understood in its deeper p...

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Publicado en:Nursing Reports Vol. 15; no. 8; pp. 284 - 300
Autores principales: Dellafiore, Federica, Diamanti, Orejeta, Guardamagna, Luca, Modena, Gloria, Servi, Pierpaolo, Rotondo, Donato Antonio, Nania, Tiziana, Saba, Andreina, Artioli, Giovanna
Formato: research tables/charts Journal Article
Publicado: MDPI Aug2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Aug2025
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        atl: The Transition to Caregiver in Advanced Alzheimer's Disease: From Emotional Connection to Care Responsibility—A Grounded Theory Approach.
      aug:
        au:
          Dellafiore, Federica
          Diamanti, Orejeta
          Guardamagna, Luca
          Modena, Gloria
          Servi, Pierpaolo
          Rotondo, Donato Antonio
          Nania, Tiziana
          Saba, Andreina
          Artioli, Giovanna
        affil: Department of Life Health Sciences and Health Professions, Link Campus University, 00165 Rome, Italy
      sug:
        subj:
          Caregivers Psychosocial Factors
          Alzheimer's Disease
          Extended Family Psychosocial Factors
          Family Attitudes
          Caregiver Attitudes
          Human
          Grounded Theory
          Qualitative Studies
          Constant Comparative Method
          Adult
          Caring
          Social Identity
          Powerlessness
          Accountability
          Unconscious (Psychology)
          Commitment
          Emotional Exhaustion Risk Factors
          Support, Psychosocial
          Family Role
          Family Relations
          Purposive Sample
          Theoretical Sample
          Ambulatory Care Facilities
          Interviews
          Middle Age
          Semi-Structured Interview
          Male
          Female
          Aged
          Aged, 80 and Over
          Interview Guides
          Adaptation, Psychological
          Emotions
          Social Behavior
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Aged, 80 & over
          Male
          Female
      ab: Background: The progression of Alzheimer's Disease (AD) deeply affects not only the diagnosed person but also their close relatives, who are often called to take on the role of informal caregivers. This transition is frequently unplanned and emotionally complex, yet poorly understood in its deeper processual dimensions. This study aims to explore and theorize the transition experienced by a family member becoming the primary informal caregiver for a person with advanced AD. Methods: A qualitative study based on the Constructivist Grounded Theory according to Charmaz's approach (2006) was conducted. In-depth interviews were carried out with 10 participants who had become informal caregivers for a loved one with advanced AD. Data were analyzed using initial coding, focused coding, the constant comparative method, and theoretical coding. Results: Ten caregivers (mean age 39 years, range 35–54; nine females) of patients with advanced AD participated in the study. The analysis revealed a complex, emotionally intense caregiving experience marked by sacrifice, feelings of powerlessness, identity loss, and the necessity of sharing caregiving responsibilities. A core category emerged: A Silent and Certain Willingness to Care, representing the caregivers' deep, often unconscious commitment to prioritize the care of their loved ones above their own needs. Four interconnected phases characterized the caregiving process: (1) The Changing Daily Life—involving significant sacrifices in personal and social life; (2) Feeling Powerless—confronting the inevitable decline without means to alter the course; (3) Losing Oneself—experiencing physical and psychological exhaustion and a sense of identity loss; and (4) Sharing with Others—seeking external support to sustain caregiving. These findings highlight the evolving nature of becoming a caregiver and the enduring dedication that sustains this role despite the challenges. Conclusions: The progression of AD deeply transforms the lives of caregivers, who become co-sufferers and active participants in the disease's management. The results underscore the urgency of designing integrative care strategies—including psychological, social, and potentially technological support—that can enhance both patient outcomes and caregiver resilience. Grounded in real-world experiences, this study contributes to the broader neurodegeneration discourse by emphasizing caregiving as a critical factor in long-term disease management and therapeutic success.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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