Current research studies

Taking part in young onset dementia research can provide an opportunity for people whose lives are affected by young onset dementia to contribute to the future of dementia care and treatment and to make a positive difference.

Listed below are some dementia research opportunities that may be of interest

What are families understanding, expectations and experiences of inpatient mental health care for people with dementia?
Researchers from the University of Hull would like to speak the family members or friends of someone with dementia who has been treated in a mental health (psychiatric) hospital in the last five years. They would like to know what you were expecting, what the care was like and what support you received. If you are willing to be interviewed over the phone or online, contact Emma Wolverson on or click here for more information.

CARECOACH research study working to develop online materials that help people who provide dementia support and care
To volunteer to take part in this research study you need to:

  • be based in or around Norfolk, Nottinghamshire or Bradford
  • have the time to take part in an interview which takes place online and may take up to two hours
  • have access to a computer or tablet
  • know how to use Zoom for video calls
  • be able to speak and read English at an everyday level

Interviews take place at a time that suits you and you can take a break during it if needed. All information provided is confidential. Follow this link to contact the research team.

Research study – improving access to counselling services for people living with dementia
Researchers from the University of Edinburgh are working alongside Martin Robertson, who is living with young onset dementia, to test the research design and methods for setting up and running a counselling service.  They are looking for people living with dementia and two family carers to take part in a 12-week counselling programme and feed back on their experience. For more information click here or contact Dr Gill Matthews –

Research study examining exploring how people with dementia and their family carers decide to talk, or not talk, to others about the diagnosis
Gianna Kohl is a PhD student at University College London. She is exploring how people with dementia and their family carers decide to talk, or not talk, to others about the diagnosis and what their experiences with this are. If willing to take part, you will be asked to take part in an interview that lasts up to one hour and will receive a small contribution in the form of a gift card for your time and commitment to the project. Alternatively, you can take part in an online survey. Contact Gianna Kohl at or click here for more information or click here to take part in the online survey.

Research study looking at staff perspectives on supporting people with young onset dementia
Thomas Faulkner, Assistant Psychologist would like to speak to people who work in services that support people with young onset dementia and are interested in sharing their experiences. Find out more here or email

Do you have lived experience of moderate or later stage frontotemporal dementia?
This research study aims to improve understanding of physical, psychological, social and spiritual needs for people with frontotemporal dementia. Find out more here or email 

Have you or your partner received a diagnosis of young onset dementia?
Louise Sheppard, a Trainee Clinical Psychologist at the University of Liverpool, would love to talk to you about what life was like before and after the diagnosis. She is looking to speak with couples who have been together for at least three years, where one person in the couple has young onset dementia, for up to 60 minutes in an online interview. For more information, click here, or email Louise:

Are you a young person with caring responsibilities for a person with dementia?
Researchers at Bangor University are looking for participants aged 11-17 across the UK to take part in a study that aims to improve the support that is available to young dementia carers. There are many secondary school children who help care for somebody with dementia (often a parent or grandparent) but there is very little support available to them.  Email Patricia Masterson Algar for more information or click here.

Online peer support for people with young onset dementia
Esther Gerritzen is a PhD student from the University of Nottingham. She is interested to find out more about how people experience online peer support, and for those who don’t use it, she would like to learn more about why that is and what the barriers are they might experience. She is looking for participants with a young onset dementia diagnosis. You do not need to have any experience with online peer support in order to take part. Contact Esther on, click here to find out more or click here to take part in the survey.

Do you have a parent diagnosed with an inheritable type of dementia?
Researchers from Hunter College, New York, the University of Sheffield and Manchester Metropolitan University are interested in understanding the impact on children who are now 18 years of age or older of having a parent with an inheritable type of dementia (such as familial Alzheimer’s disease or frontotemporal dementia) and their thoughts about genetic testing in order to better support such individuals and their families.

If you are 18 or older and have a parent with an inheritable form of dementia, they would be interested in talking to you about your experience, and about your thoughts around genetic testing. They are hoping that what you have to tell them will help support other people in your situation. This research is being led by: Caroline Gelman, Ph.D., Associate Professor of Social Work at Hunter College, New York and Pat Sikes, Ph.D., Emeritus Professor, School of Education, University of Sheffield, England. If you are interested in participating in an interview or have further questions, please contact Pat:

The DEFIN-YD research project – for people living with young onset dementia in England
The DEFIN-YD project is looking for younger people with dementia (people diagnosed before the age of 65) to join a project about research. They are looking for people who live in England, who have a diagnosis of young onset dementia, and who are interested in shaping current and future research.

The group will enable you to meet other people living with the condition and influence research based on your own experiences. You will be paid a small contribution, using gift cards, for your time and commitment to the project. You will need to come to four two-hour Zoom meetings between May 2021 and November 2021. At the Zoom meetings, you will discuss young onset dementia research and there will be regular breaks throughout. There will be someone to guide the meetings, and we welcome family supporters to join too if you wish.  Contact Research Assistant Anna Crawford if you would like more information.

For more dementia research opportunities, please visit Join Dementia Research.

Research and evidence

A collection of research focusing on the most prominent subjects relating to young onset dementia, gathered by members of the Young Dementia Network Steering Group and other experienced researchers

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Simple guide to research

An introductory guide to help you find and understand research on young onset dementia

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