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

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.

The impact of the Covid-19 pandemic on people with young onset dementia, their informal carers and healthcare workers
Researchers at the University of Reading are conducting a study on the impact of the Covid-19 pandemic on people with young onset dementia, their informal carers and healthcare workers. They are looking for participants who live in the UK who are:

  • living with young onset dementia and under the age of 65
  • an informal caregiver or healthcare worker of a person living with young onset dementia and above the age of 18

The study involves online surveys which will include questions about how the pandemic has impacted various aspects of your life such as your ability to access care services, your social life, work life, relationships, mental health etc. You can take part in the survey via this link or contact Zeenia Ellikka at or Professor Arlene Astell at

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.

Experiences of carers of people with dementia who have been attending a carer support group that has moved on-line during the Covid-19 pandemic
Bethany McLoughlin is a PhD Student at Warwick University.  She is conducting a study investigating groups for family carers of people with dementia. The study involves caregivers who were members of a face-to-face group that has since moved online as a result of the Covid-19 pandemic completing a 10-minute questionnaire about their experiences. You can find out more information here.

Help improve accessibility at festivals and events for younger people living with dementia
Cameron Hughes’s undergraduate dissertation research at Edinburgh Napier University aims to develop recommendations for festival and event managers on improving accessibility for people living with young onset dementia. He would love to hear your thoughts on best practice and areas for improvement.  You can connect with Cameron via Twitter or email cameronhjhughes​ 

Surrey-based participatory creative research and activity for people living with young onset
Moving Kinship is a participatory and creative support activity open to people living with young onset dementia, their family carers and wider kinship groups. Participants are invited to join online or telephone interview-conversations to talk about their stories and experiences of living with, and being affected by young onset dementia. Themes from the interviews will be used to create a personalised performance inspired by these stories. The interviews will be conducted by Beatrice Allegranti, a dance movement psychotherapist. Interviews will take place online between February-May 2021. One of the aims of the project is to bring together people across Surrey who are affected by young onset dementia with a view to creating a supportive and sustainable network that will continue beyond the life of the project. Click here to find out more.

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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