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

Lead investigator: Professor Pat Sikes    
Institution: University of Sheffield
Grant Type: Project grant
Grant amount: £98,057    
Start date: October 2014
Completion date: July 2017
Scientific title: The Perceptions and Experiences of Children and Young People With a Parent With Dementia

What was the project, and what did the researchers do?

The UK public’s awareness of dementia is rising. However, people usually perceive dementia as a condition of the elderly, with the most affected family members being their partners and middle-aged children. We have limited information and knowledge about the experience of children and young people whose parents developed dementia at a young age, and there are currently few resources and services to support them. 

The researchers in this project used social media to recruit 25 young people aged 6 to 31, and asked them to share their experiences of having a parent with dementia. They encouraged the participants in the study to openly and freely tell their story without being guided by questions prepared by the researchers. This enabled for the participants to tell their genuine stories, rather than be guided by the researchers’ preconceptions. The participants’ narratives were then transcribed and analysed.  

The researchers made sure that the interviews were undertaken in a safe environment, and that participants received the support they needed throughout the study. 

What were the key results, and how will this help in the fight against dementia?

The study highlighted how having a parent with dementia causes a lot of emotional, mental and physical distress, which can impact younger people throughout their lives.  

The team found that the information and services that are available for family members of people with dementia do not offer the support needed by younger family members. Public opinion that dementia is a condition that only affects older people was also found to be upsetting for the study’s participants.  

The researchers found that the education and careers of young people can be negatively affected by having a parent with dementia. For example, participants experienced difficulties around concentrating, work and school hours, and in pursuing higher education. 

Participants explained how their personal lives were affected by their parents’ dementia, with parents missing their significant life events, such as graduations and weddings. They also felt they could no longer rely on their parents for help, advice, or have them involved in their life decisions.

The researchers found that participants experienced distressing grieving processes, due to the unpredictable course of dementia. Some also experienced jealousy of their friends who had parents with conditions that are no longer stigmatised and for which treatment may be available, such as cancer.

The study showed that it is important to develop information and services to support younger family members of people with dementia in a tailored way that reflects their younger age. It also showed how younger relatives of people with dementia require specific emotional and mental wellbeing support. Opportunities for these younger family members to be in contact with others living similar experiences are also important. Finally, more needs to be done to raise awareness about the different types of dementia that can affect people of all ages. 

What happened next? Future work and additional grants

The teams involved in this project are planning to continue their work around the experiences lived by younger people with a parent with dementia. They plan to continue publishing papers using the data they collected for this study. They would also be interested in exploring the experiences of people over the age of 35 whose parents had dementia when they were younger. They have formed a number of research partnerships with the University of Sheffield and the City University of New York.

How were people told about the results? Conferences and Publications

Published papers

Sikes, P. (2015) ‘Hijacked by the project?: Research which demands to be done’ Research in Teacher Education

Hall, M. & Sikes, P. (2016) ‘From ‘What the hell is going on?’ to the ‘Mushy middle ground’ to ‘Getting used to a new normal’: young people’s narratives around navigating parental dementia’ Illness, Crisis and Loss DOI:10.1177/1054137316651384 (gold access)

Sikes, P. & Hall, M. (2016) ‘“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’ Dementia Online First DOI:10.1177/1471301216637204 (gold access)

Hall, M. & Sikes, P.  (2017) ‘It’d be easier if she’d died’: young people with parents with dementia articulating inadmissible stories Qualitative Health Research  Open access. 

Sikes, P. & Hall, M. (2017) ‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: and sadness in children and young people who have a parent with dementia Mortality. Open access.

The researchers have submitted an additional paper, and are currently writing or revising six other papers.

Conferences, seminars, lectures, presentations focusing on or referencing the project since October 2016

October 2015     - ‘’It was then that I thought 'woah this isn't my Dad': What the ‘still the same person’ narrative can mean for children and young people who have a parent with dementia’. International Qualitative Health Research Conference Toronto, October.
October 2015 - ‘Every time I see him he’s worst he’s been and the best he’ll be’: Interpretations of time and the trajectory of dementia’. International Qualitative Health Research Conference Toronto, October.
November 2015 - Sheffield Hallam Seminar Series: Critical Perspectives on Theory and Methodology Challenging Master Narratives: ‘Stories Which Have to be Told’.
January 2016 - University of the West Indies/Roytec, Trinidad. Lecture: Ethical dilemmas and moral decisions.
February 2016     - Scunthorpe Youth Council. Presentation on Young Onset Dementia.
April 2016 - University College London. Rare Dementia Support Groups. Joint JointFAD/fFTMeeting. ‘Diagnosis and beyond: children and young people’s perceptions of navigating parental dementia’.
May 2016 - ‘My dad is gonna lose his memory completely… who else will Remember my childhood?’: the identities children and young people who have a parent with dementia’. Alzheimer’s Disease International Budapest.
May 2016 - ‘Researching difficult dementia stories: ethical challenges and painful reflections’. Alzheimer’s Disease International Budapest, May (poster presentation).
June 2016 - ‘Getting used to new normal: some perceptions and experiences of children and young people who have a parent with a YOD’. Alzheimer’s Society Research Conference Bristol (poster presentation).
June 2016 – South Yorkshire DEMRAG meeting Presentation: ‘The perceptions and experiences of children and young people who have a parent with dementia’.
September 2016 - University of Sheffield, Faculty of Social Sciences Conference Presentation: ‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be: the perceptions and experiences of children and young people who have a parent with dementia’.
September 2016 - Young Dementia UK Annual Conference. ‘What young people told us about having a parent with dementia – and what might help’.
January 2017: Open University, Faculty of Wellbeing, Education & Language Studies. Seminar: ‘Stories to challenge master narratives’.
February 2017: Alzheimer’s Society UK Knowledge Sharing Forum for Society policy makers focused on the Perceptions and Experiences of Children and Young People Who Have a Parent With Dementia project.
February 2017: Contribution to Alzheimer’s Society UK evidence gathering exercise on the quality of life for carers and people with dementia. 
March 2017: University of Plymouth, Voice Inclusion and Participation Research Group Seminar: ‘”I thought I was the only person to have cancer envy”: researching and re-presenting the perceptions and experiences of children and young people who have a parent with dementia’.
May 2017: Alzheimer’s Society Research Conference, Bristol. ‘The Perceptions and Experiences of Children and Young People Who Have a Parent With Dementia: Impact’ (Poster presentation).
May 2017: Newcastle University, School of Education, Communication & Language Sciences Seminar: ‘Challenging Master Narratives: Stories That Have To Be Told’,
June 2017 Alzheimer’s Shows, Olympia (10/6/17) and Manchester (24/6/17). ‘The experiences of young people who have a parent with dementia’.
July 2017 University of Leeds, BSA Youth Studies Interest Group. ‘Your Mum has dementia? My Granny had that’: the challenge of carrying out research with young people with relation to dementia’. 
July 2017: Alzheimer’s Association International Conference, London, joint paper with Caroline Gelman, Hunter College, City University of New York. ‘The experience and needs of young children in younger-onset dementia families: a UK – US comparison’.
Future – but definite - conference presentation focusing on or referencing the project
October 2017: Qualitative Health Research Conference, Quebec, paper presentation -  ‘It’d be easier if she’d died’: researching and reporting taboo issues AND poster presentation - ‘You start grieving even when they’re standing right in front of you’: the grief of children and young people who have a parent with young onset dementia

Blogs

Mel Hall (2017):  Why we need to provide more support for children of younger people with dementia - Alzhiemer's Society blog

Pat Sikes (2016) World Alzheimer’s Month: How much do you know about dementia? - Medium.com, SoEResearch

Pat Sikes (2016) ‘Children and young people who have a parent with dementia’ - Young dementia UK

Pat Sikes (2015) ‘Cambridge doesn’t take people like you’  - Medium.com Society Matters and Ally Bally Bee.