'Too young to sit at home': a qualitative study conducted among employees with young-onset dementia and their relatives

被引:1
作者
Smeets, Bo [1 ]
Janssen, Niels [1 ]
Peetoom, Kirsten [1 ]
Boots, Lizzy [1 ]
Bakker, Christian [2 ,3 ,4 ]
de Vugt, Marjolein [1 ]
机构
[1] Maastricht Univ, Mental Hlth & Neurosci Res Inst, Alzheimer Ctr Limburg, Dept Psychiat & Neuropsychol, Maastricht, Netherlands
[2] Radboudumc Alzheimer Ctr, Nijmegen, Netherlands
[3] Radboud Univ Nijmegen Med Ctr, Dept Primary & Community Care, Nijmegen, Netherlands
[4] Ctr Specialized Geriatr Care, Groenhuysen, Roosendaal, Netherlands
关键词
Young-onset dementia; work; continued employment; perspectives; support needs; employees with dementia; relatives; PEOPLE; EXPERIENCES; DIAGNOSIS; CAREGIVERS;
D O I
10.1080/13607863.2024.2345132
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
ObjectivesYoung-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives.MethodSemi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets.ResultsA total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives.ConclusionThe findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.
引用
收藏
页码:1119 / 1128
页数:10
相关论文
共 55 条
[31]   The vocational situation in cases of memory deficits or younger-onset dementia [J].
Öhman, A ;
Nygård, L ;
Borell, L .
SCANDINAVIAN JOURNAL OF CARING SCIENCES, 2001, 15 (01) :34-43
[32]  
Omote Shizuko, 2023, Int J Environ Res Public Health, V20, DOI 10.3390/ijerph20136235
[33]   Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research [J].
Palinkas, Lawrence A. ;
Horwitz, Sarah M. ;
Green, Carla A. ;
Wisdom, Jennifer P. ;
Duan, Naihua ;
Hoagwood, Kimberly .
ADMINISTRATION AND POLICY IN MENTAL HEALTH AND MENTAL HEALTH SERVICES RESEARCH, 2015, 42 (05) :533-544
[34]   Focus group method and methodology: current practice and recent debate [J].
Parker, Andrew ;
Tritter, Jonathan .
INTERNATIONAL JOURNAL OF RESEARCH & METHOD IN EDUCATION, 2006, 29 (01) :23-37
[35]   Doing as much as I can do: The meaning of activity for people with dementia [J].
Phinney, Alison ;
Chaudhury, Habib ;
O'Connor, Deborah L. .
AGING & MENTAL HEALTH, 2007, 11 (04) :384-393
[36]   I'm not all gone, I can still speak: The experiences of younger people with dementia. An action research study [J].
Pipon-Young, Fiona E. ;
Lee, Kristina M. ;
Jones, Fergal ;
Guss, Reinhard .
DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE, 2012, 11 (05) :597-616
[37]  
Raats I., 2019, PARTICIPATIEKOMPAS
[38]   Understanding the needs and experiences of people with young onset dementia: a qualitative study [J].
Rabanal, Luisa I. ;
Chatwin, John ;
Walker, Andy ;
O'Sullivan, Maria ;
Williamson, Tracey .
BMJ OPEN, 2018, 8 (10)
[39]   Psychosocial interventions for people with young onset dementia and their carers: a systematic review [J].
Richardson, Angela ;
Pedley, Gillian ;
Pelone, Ferruccio ;
Akhtar, Farrukh ;
Chang, Jacqueline ;
Muleya, Wilson ;
Greenwood, Nan .
INTERNATIONAL PSYCHOGERIATRICS, 2016, 28 (09) :1441-1454
[40]  
Riegg Cellini S., 2025, Handbook of Practical Program Evaluation, P636, DOI [10.1002/9781119171386, 10.1002/9781119171386.ch24, DOI 10.1002/9781119171386.CH24]