Experiences and needs of spouses of persons with young-onset frontotemporal lobe dementia during the progression of the disease

被引:40
|
作者
Johannessen, Aud [1 ]
Helvik, Anne-Sofie [1 ,2 ,3 ]
Engedal, Knut [1 ]
Thorsen, Kirsten [1 ,4 ]
机构
[1] Vestfold Hosp Trust, Norwegian Natl Advisory Unit Ageing & Hlth, POB 2136, NO-3103 Tonsberg, Norway
[2] Norwegian Univ Sci & Technol NTNU, Fac Med, Dept Publ Hlth & Gen Practice, Trondheim, Norway
[3] St Olavs Univ Hosp, Trondheim, Norway
[4] Univ Coll Oslo & Akershus, Norwegian Social Res NOVA, Oslo, Norway
关键词
coping; early-onset dementia; experiences; frontotemporal lobe dementia; qualitative study; need; services; partners; support; FAMILY CAREGIVERS; SUPPORT; PEOPLE;
D O I
10.1111/scs.12397
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
BackgroundTwo of the most common types of young-onset dementia (<65years old) are Alzheimer's disease and frontotemporal lobe dementia (FTLD). A limited amount of research that focuses on the needs of spouses of persons with young-onset FTLD (yo-FTLD) has been published. Thus, we have carried out a study aiming to examine the spouses of yo-FTLD experiences and needs for assistance in daily life. MethodQualitative interviews with 16 informants (aged 51-69years; nine wives, six husbands and one male cohabitant) were conducted in 2014 and 2015. The data were analysed by reformulated and modified method of Grounded Theory. FindingsFrom the interviews, three main themes with subthemes emerged: The first main theme that appeared is sneaking signs at the early stage of dementia. It covers two subthemes: incomprehensible early signs and lack of self-insight. The second main theme that appeared is other relations, and it covers three subthemes: the torment, interference with work and vanishing social relations. The third main theme: needs for assistance through all stages of dementia, are described under three subthemes: Relief of the diagnosis, support at home and the path to the nursing home. ConclusionThe interviews showed that spouses and the whole family of yo-FTLD need interdisciplinary, individualised and specialised support throughout the progression of the disorder. Furthermore, there is a need for more knowledge about yo-FTLD among health personnel, including general practitioners. IT-solutions can contribute to developing such services and support to the entire family.
引用
收藏
页码:779 / 788
页数:10
相关论文
共 50 条
  • [1] Young-onset frontotemporal dementia with FUS pathology
    Gowell, Matthew
    Baker, Ian
    Ansorge, Olaf
    Husain, Masud
    [J]. PRACTICAL NEUROLOGY, 2021, 21 (02) : 149 - +
  • [2] THE UNIQUE EXPERIENCES OF CHINESE SPOUSAL CAREGIVERS OF PERSONS WITH YOUNG-ONSET DEMENTIA
    Pang, R. C. K.
    Lee, D. T. F.
    [J]. AGE AND AGEING, 2018, 47
  • [3] Family experience of young-onset dementia: the perspectives of spouses and children
    Chirico, Ilaria
    Ottoboni, Giovanni
    Linarello, Simona
    Ferriani, Elisa
    Marrocco, Enrica
    Chattat, Rabih
    [J]. AGING & MENTAL HEALTH, 2022, 26 (11) : 2243 - 2251
  • [4] Quality of Life in People with Young-Onset Alzheimer's Dementia and Frontotemporal Dementia
    Hvidsten, Lara
    Engedal, Knut
    Selbaek, Geir
    Wyller, Torgeir Bruun
    Bruvik, Froydis
    Kersten, Hege
    [J]. DEMENTIA AND GERIATRIC COGNITIVE DISORDERS, 2018, 45 (1-2) : 91 - 104
  • [5] Young-onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance
    Dourado, M. C. N.
    Laks, J.
    Kimura, N. R.
    Baptista, M. A. T.
    Barca, M. L.
    Engedal, K.
    Tveit, B.
    Johannessen, A.
    [J]. INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, 2018, 33 (06) : 824 - 831
  • [6] Young-Onset Dementia Unanswered Questions and Unmet Needs
    Levine, Deborah A.
    [J]. JAMA INTERNAL MEDICINE, 2013, 173 (17) : 1619 - 1620
  • [7] Finding positives in caregiving: The unique experiences of Chinese spousal caregivers of persons with young-onset dementia
    Pang, Rebecca C. K.
    Lee, Diana T. F.
    [J]. DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE, 2019, 18 (05): : 1615 - 1628
  • [8] Interventions for Persons with Young-Onset Dementia and Their Families: A Scoping Review
    Cui, Xiaoyan
    Wang, Junqiao
    Wu, Bei
    Zhao, Qianhua
    Tang, Xueting
    Wang, Jing
    [J]. JOURNAL OF ALZHEIMERS DISEASE, 2024, 97 (04) : 1519 - 1531
  • [9] INTERVENTIONS FOR PERSONS WITH YOUNG-ONSET DEMENTIA AND THEIR FAMILIES: A SCOPING REVIEW
    Cui, Xiaoyan
    Wang, Junqiao
    Wu, Bei
    Zhao, Qianhua
    Tang, Xueting
    Thompson, Roy
    Wang, Jing
    [J]. INNOVATION IN AGING, 2023, 7 : 1071 - 1071
  • [10] The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review
    Millenaar, Joany K.
    Bakker, Christian
    Koopmans, Raymond T. C. M.
    Verhey, Frans R. J.
    Kurz, Alexander
    de Vugt, Marjolein E.
    [J]. INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, 2016, 31 (12) : 1261 - 1276