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Family experience of young-onset dementia: the perspectives of spouses and children.
- Source :
- Aging & Mental Health; Nov2022, Vol. 26 Issue 11, p2243-2251, 9p, 1 Chart
- Publication Year :
- 2022
-
Abstract
- Although young-onset dementia (YOD) affects the whole family system, this population is still under-represented in literature, and no progress in care provision has been made. Hence, additional evidence is necessary to understand how family and social relationships are affected by YOD and care challenges, as to provide recommendations for clinical practice and service improvement from a family perspective. Family carers were recruited via one memory clinic and the local Alzheimer's Associations in Italy. Semi-structured interviews explored their experiences with YOD, the impact of the condition on their lives, family and social relationships, and the support and care they received. Transcripts were coded by three researchers and analysed using inductive thematic analysis. Thirty-eight interviews were conducted with 26 spouses and 12 adult children. Three themes emerged: 1) Problems around diagnosis, 2) Lack of post-diagnostic support, and 3) Living with YOD as a family. Overall, problems occurred across the dementia pathway. Without appropriate support, it was difficult for families to adjust to living with YOD and to the associated changes in family roles and relationships. Since optimal care depends on good family relationships, better support for families in the adaptation to condition would likely benefit patient care while ensuring social inclusion and health equity for vulnerable groups. [ABSTRACT FROM AUTHOR]
- Subjects :
- FAMILIES & psychology
TREATMENT of dementia
DELAYED diagnosis
CAREGIVERS
SOCIAL support
ALZHEIMER'S disease
RESEARCH methodology
INTERVIEWING
FAMILY attitudes
DEMENTIA patients
SPOUSES
EXPERIENCE
MEDICAL protocols
DEMENTIA
AGE factors in disease
INTERPERSONAL relations
THEMATIC analysis
PATIENT care
HEALTH equity
PSYCHOLOGICAL adaptation
SOCIAL integration
Subjects
Details
- Language :
- English
- ISSN :
- 13607863
- Volume :
- 26
- Issue :
- 11
- Database :
- Complementary Index
- Journal :
- Aging & Mental Health
- Publication Type :
- Academic Journal
- Accession number :
- 159861283
- Full Text :
- https://doi.org/10.1080/13607863.2021.2008871