Coexisting with anomie: Experiences of persons living with early-stage dementia: A grounded theory study

Individuals in the early stages of dementia often endure elevated levels of stress and anxiety, which can hinder their ability to adapt to the progression of dementia. To mitigate the negative impacts of dementia more effectively, it is necessary to explore the trajectory of the adaptation process of persons living with dementia. This study aimed to construct a theoretical framework for the adaptation process of individuals in the early stages of dementia. Participants were dyads of persons diagnosed with mild dementia or mild cognitive impairment (≥ 60 years of age) and their primary family caregivers. This longitudinal study used a grounded theory approach to explore the adaptation trajectory changes in persons with mild dementia over a 3-year period. Data were collected from dyads with face-to-face interviews. Analysis of the interview data revealed the core category was ‘Coexisting with anomie: Progressive disappointment and striving’, which was comprised of three categories: awareness of alienation, unsettled feelings, and restorative avoidance coping. Categories changed depending on levels of cognition and constituted progressive and cyclical dynamic processes. Four contextual factors positively or negatively influenced adaptation: level of insight about dementia, personal traits, caregiving style of the caregiver, and level of social interactions. These findings provide a new perspective about the mental health of persons in early-stage dementia. Understanding coexisting with anomie and related influencing factors could facilitate the development of support interventions by mental health nursing staff, which could improve emotional safety, promote psychological well-being, and increase quality of life for persons living with dementia.