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Perceptions and experiences of children and young people with a parent with dementia

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Recent information campaigns and sympathetic media coverage have sought to raise public awareness of dementia. It is not surprising though, given the age profile of, and the type of dementia experienced by those most commonly affected, that the emphasis has been on describing and understanding Alzheimer's disease in older people. This reflects dementia services provision and focus. However, the numbers of those diagnosed with early-onset dementia are rising.

The assumption has tended to be that when someone has and is eventually diagnosed with dementia, the family members most affected will be partners or middle-aged children and there is a growing body of research that has looked at these people's experiences and needs, particularly with regard to caring responsibilities.
When the impact that having a family member with dementia can have on children, adolescents or young adults has been considered, it has usually been in their relationship as grandchildren. However there is a growing number of under 25s who have a parent with dementia both as a result of the rise in early onset diagnoses and also because of demographic changes including increasing postponement of childbearing and changes in family patterns and structures with more people having second and subsequent families. It is therefore important to explore the experiences of children and young people who have a parent with dementia.
The aim of this study is to focus on the perceptions and experiences of these children and young people with particular attention to any impact on their education and schooling.

What does this project involve?

This study will collect the in-depth autobiographical accounts of up to 20 young people between the ages of 7 and 25 who have or have had a parent with dementia. This study aims to co-produce materials that young people themselves believe would be useful and supportive to other young people in a similar situation.

Our research findings

  • 22 children and young people have told us what it is like to have a Mum or Dad with dementia. This includes children aged 7, teenagers and young adults. Some of the young adults grew up with a parent with dementia as a child or teenager, others were in their early twenties when it started.
  • They have told us how hard it is to have a parent with dementia. Participants wanted their peers and support services to understand how difficult it was to have a parent with the disease, especially when their Mum or Dad who was suddenly violent or nasty towards them, didn’t recognise them or didn't remember their birthday, didn't congratulate them on their educational achievements because they didn't understand.
  • We are currently preparing resources to help support young people in this situation.

Open Access Journals

From “What the Hell Is Going on?” to the “Mushy Middle Ground” to “Getting Used to a New Normal”: Young People’s Biographical Narratives Around Navigating Parental Dementia

‘‘It was then that I thought ‘whaat? This is not my Dad’’: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia

Contact details

If you would like to know more about this project, please contact Pat Sikes (Principal Investigator) at p.j.sikes@sheffield.ac.uk or Melanie Hall (Research Associate) at Melanie.hall@sheffield.ac.uk for further details.

Research Blog: Dementia

World Alzheimer’s Month Blog

Professor Pat Sikes and Dr Mel Hall discuss the knowledge around young onset dementia in the Education Research blog.

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News Story

News report on Channel 4

Aired Monday 16th May 2016, Professor Pat Sikes presented her research on children living with a parent with dementia for Channel 4.

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Care and Cure Magazine

Care and Cure Magazine

This research is the main feature of Issue 4 (Autumn 2015) of The Alzheimer’s Society research magazine Care and Cure.

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Education Matters

Education Matters is the School of Education Blog, dedicated to sharing the most current ideas from our Research Centres.

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