Family experience of young-onset dementia: the perspectives of spouses and children

被引:9
|
作者
Chirico, Ilaria [1 ]
Ottoboni, Giovanni [1 ]
Linarello, Simona [2 ]
Ferriani, Elisa [2 ,3 ]
Marrocco, Enrica [2 ,3 ]
Chattat, Rabih [1 ]
机构
[1] Univ Bologna, Dept Psychol, Bologna, Italy
[2] Ctr Cognit Disorders & Dementia, Local Hlth Care Unit, Bologna, Italy
[3] Dept Oncol, Local Hlth Care Unit, Bologna, Italy
关键词
Young onset dementia; patients; spouses; adult children; caregivers; family relations; delayed diagnosis; adaptation; psychological; social isolation; delivery of health care; CARE; PEOPLE; CAREGIVERS; DIAGNOSIS; IMPACT; DISEASE; INTERVENTIONS;
D O I
10.1080/13607863.2021.2008871
中图分类号
R592 [老年病学]; C [社会科学总论];
学科分类号
03 ; 0303 ; 100203 ;
摘要
Objectives 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. Method 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. Results 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. Conclusions 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.
引用
收藏
页码:2243 / 2251
页数:9
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