Young relatives of parents with dementia – how is their everyday life and well-being?

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Background: In Denmark, approximately 2000 people have young unset dementia and a significant part may have children who are teenagers or in their early 20’s. So far, efforts to support these young relatives have been sparse and up until recently, they have constituted an overlooked group in the Danish welfare system. Experiences from practice and preliminary results from VIA University College suggest that young relatives may face major disturbances in everyday life and well-being. The caregiver burden of the adult relatives is well documented. However, knowledge regarding the young relatives is still inadequate.

Aim: The aim is to explore how 18-25 year-olds experience their everyday life with a parent with dementia and how it affects the youngster’s engagement in leisure activities, social life, education and work. This profile of their everyday life will be correlated with outcomes on the youngster’s self-reported well-being. The long-term goal is to contribute to improve preventative efforts, assistance and support provided by professional caregivers to this marginalized group. Furthermore, we aim to qualify the foundation of knowledge for the organization of future interdisciplinary initiatives.

Methods: In May 2018, a survey and a qualitative interview study among relatives aged 18 to 25 years are performed. Participants are recruited through dementia associations, social media and professional caregivers. Survey data is obtained by a nationally distributed online questionnaire and we aim to reach at least 100 replies. The questionnaire contains items related to everyday life and well-being. Qualitative data is obtained by 7 – 8 semi-structured interviews using a themed interview guide. Data will be analyzed and interpreted in a phenomenological-hermeneutic perspective inspired by Kvale and Brinkmann (2015).

Outcome: All data is collected by June 2018 and analysed during Summer 2018. Results will be presented.
Original languageEnglish
Publication date31 Oct 2018
Publication statusPublished - 31 Oct 2018
Event28th Alzheimer Europe Conference: Making dementia a European priority - Barcelona, Spain
Duration: 29 Oct 201831 Oct 2018


Conference28th Alzheimer Europe Conference
Internet address


  • health, nutrition and quality of life
  • dementia
  • relatives

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