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

The experiences of caring for a partner with young onset dementia
Angela Goldsmith, a trainee counselling psychologist working within the NHS and studying at the University of the West of England, is conducting research to explore the personal experiences of individuals who are caring for a partner living with young onset dementia. Her study will explore how people experience and make sense of:

· The transition to caregiver role
· Coping strategies used to adapt to changes in your relationship
· Your experience of stigma and the impact it may have on your relationship
· The dynamics in your relationship

If you are currently living with and caring for a partner with young onset dementia then she would be really interested to hear and talk about your experiences. If you would like to know more about this research, email : angela2.goldsmith@live.uwe.ac.uk

Creative dementia research project for people living with young onset dementia and their carers in the Derby area 
Are you a person living with young onset dementia (aged under 65) or are a family member or caregiver for someone with young onset dementia?  You are invited to take part in an exciting and fun creative project.

You will take part in 10 weekly creative arts workshops and be part of a research project run by researchers from the Universities of Derby and Northampton, which will include three interviews and questionnaires. Sessions will be run at Derby Theatre, Derby starting on 5th October 2022. Each workshop will be up to two hours, with coffee and time to chat. If you would like further information or would like to take part, please contact Clive Holmwood. Associate Professor cdrg@derby.ac.uk

Can technology help us to feel less lonely?
Dr Merryn Anderson from Exeter University is looking for people aged over 18 with a diagnosis of dementia to take part in a study which aims to find out if people with dementia who use technology to connect with others feel less lonely. It also asks if the Covid-19 pandemic has changed your use of technology to connect with other people. The anonymous online survey takes about 20 minutes to complete. If you would like to complete the survey online, click here. If you would like a paper copy of this survey email m.anderson8@exeter.ac.uk

Do you identify as a LGBT+ person who lives with dementia?Researchers at Lancaster University are conducting a research study to understand the experiences of LGBT+ people living with dementia and what is important to them now and in the future. Click here to find out more or email Claude Chidiac c,chidiac@lancaster.ac.uk

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 e.wolverson@hull.ac.uk 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 – g.matthews@ed.ac.uk

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 p.m.algar@bangor.ac.uk or click here.

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, PhD, Associate Professor of Social Work at Hunter College, New York and Pat Sikes, PhD, 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: p.j.sikes@sheffield.ac.uk

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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