ArticleInternational journal of qualitative studies on health and well-being2018
"To be, or not to be": experiencing deterioration among people with young-onset dementia living alone.
Article in International journal of qualitative studies on health and well-being, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 3 of them syntheses that pooled it.
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Who cites it
20 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- The Psychosocial Needs of People With Dementia Living Alone: A Narrative Synthesis Systematic Review.Dementia (London, England) · 2026Pooled it
- People With Dementia Disclosing Their Diagnosis to Social Networks: A Systematic Review and Meta-Synthesis.The Gerontologist · 2025Pooled it
- The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis.Dementia and geriatric cognitive disorders · 2020Pooled it
- Living alone with dementia is a neglected source of inequality: findings from a scoping review of research evidence.Systematic reviews · 2025Article
- "It may just be aging": illness representations of Brazilians with Alzheimer's disease.Cadernos de saude publica · 2025Article
- Transitions: Living With Young-Onset Alzheimer's Disease: A Qualitative Interview Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A meta-ethnography of identity formation among people with early-onset dementia.The British journal of occupational therapy · 2024Review
- Article
- Social health markers in the context of cognitive decline and dementia: an international qualitative study.Frontiers in psychiatry · 2024Article
- Young-onset dementia diagnosis, management and care: a narrative review.The Medical journal of Australia · 2023Review
- Peer support through video meetings: Experiences of people with young onset dementia.Dementia (London, England) · 2023Article
- Giving Voice to People with Dementia and Perspectives Regarding a Dementia-Friendly Society: A Synthesis of Qualitative Studies.Journal of multidisciplinary healthcare · 2023Review
- One Diagnosis, Two Perspectives: Lived Experiences of Persons With Young-Onset Dementia and Their Care-Partners.The Gerontologist · 2022Article
- Music and Psychology & Social Connections Program: Protocol for a Novel Intervention for Dyads Affected by Younger-Onset Dementia.Brain sciences · 2022Article
- In It Together: A Qualitative Meta-Synthesis of Common and Unique Psychosocial Stressors and Adaptive Coping Strategies of Persons With Young-Onset Dementia and Their Caregivers.The Gerontologist · 2022Article
- Article
- Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study.International journal of qualitative studies on health and well-being · 2020Article
- Awareness of Functional Status: People with Alzheimer's Disease Abilities to Self-Report Impairment in Activities of Daily Living.Journal of Alzheimer's disease reports · 2020Article
- Factorial Structure and Measurement Invariance of the Acceptance and Action Questionnaire-Stigma (AAQ-S) in Spain.International journal of environmental research and public health · 2020Article
- Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia.Journal of multidisciplinary healthcare · 2019Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Having dementia before the age of 65 (YOD) represents a radical break from an age-normative and expected life course. The disease afflicts the person's identity, threatens the self-image and self-confidence, and erodes the person's plans. The aim of the study was toexamine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences. A longitudinal study using a qualitative approach was used. Five interviews, each with 10 informants, took place every 6 months from 2014 to 2017. The main theme is the person's experiences of changes of identity over time. The most significant aspects of their experiences of the dementia affecting them and their reactions are these: the initial signs, coping efforts, concealing the diagnosis, social retraction, existential anxiety, revival of the self, worse and worse, and health personnel as background. The study concluded thatpeople with dementia are able to describe their experiences and needs for a long time during the progression of dementia. Their voices should be listened to for planning of services. Personalized care should be used to support them in order to preserve their identity in a normalized everyday life as far as possible.
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