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Perspectives of people with young-onset dementia on future quality of life: a qualitative interview study with implications for advance care planning

Published online by Cambridge University Press:  02 February 2024

Jasper Maters ,
Jenny T. van der Steen ,
Marieke Perry ,
Marjolein E. de Vugt ,
Christian Bakker  and
Raymond T.C.M. Koopmans
Jasper Maters
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Center, Nijmegen, the Netherlands
Jenny T. van der Steen
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Center, Nijmegen, the Netherlands Department of Public Health and Primary Care, University Medical Center Leiden, Leiden, the Netherlands
Marieke Perry
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Center, Nijmegen, the Netherlands
Marjolein E. de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Christian Bakker
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Center, Nijmegen, the Netherlands Groenhuysen, Center for Geriatric Care, Roosendaal, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Center, Nijmegen, the Netherlands Joachim en Anna, Center for Specialized Geriatric Care, Nijmegen, the Netherlands

Abstract

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Introduction:

Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.

Methods:

Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.

Results:

Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.

Discussion:

Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

Type
Pre Congress Workshops
Information
International Psychogeriatrics , Volume 35 , Issue S1 , December 2023 , pp. 12
Copyright
© International Psychogeriatric Association 2024