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 lived experiences of former athletes affected by young onset dementia
Kieran McGee, a postgraduate student from Loughborough University, is undertaking a research project that is looking to explore the experiences of former athletes with young onset dementia. He would like to speak to people living with young onset dementia who are former athletes, or who have a history of playing sport, about their experiences in sport and their experiences of the condition. If you are interested in participating, or you would like to know more about this study, please contact Kieran at pskm5@lunet.lboro.ac.uk
(July 2023)

Understanding family carers’ experiences of providing personal care for someone living with dementia
Are you a current or previous family carer of a person with dementia with direct experience of providing them with personal care? If yes, researchers from the University of Worcester would like to hear from you. Find out more here, or complete their survey here.
(July 2023)

Dementia and hearing loss
Clare Burgon, a research assistant at the University of Nottingham is looking for participants from Black, Asian, minority ethnic or LGBT+ communities to take part in a study to help make sure dementia and hearing loss research includes people from from ‘under-served’ groups. Find out more here.
(July 2023)

An exploration of the journey of living with dementia in males and females in light of gender identity
Rachel Fletcher, a doctoral student at the University of Wolverhampton is interested to learn what it is like to live as a man or woman with dementia, and how it affects your identity. She is looking for people in the West Midlands to share their experiences. Find out more via email: r.fletcher4@wiv.ac.uk or click here.
(July 2023)

Young onset dementia and feelings of gratitude
Lucy Hutchinson is a Clinical Psychology Doctorate Student at the University of Hull. Her thesis project will examine the meaning and experiences of gratitude for people living with young onset dementia. Find out more by clicking here or email Lucy at l.y.hutchinson-2021@hull.ac.uk
(May 2023)

Have you been diagnosed with cancer after your dementia diagnosis?
Georgie-Anne, a student from the University of Liverpool, is conducting research to explore how people feel when they are diagnosed with cancer, having previously been diagnosed with dementia, and how they manage this. She would like to interview people who have received both diagnoses and their family members and friends. For more information about the study click here or email Georgie-Anne at dementiaresearch@liverpool.ac.uk
(May 2023) 

A survey to help identify priorities for people with dementia
Responses to this survey will help to inform the development of LEND (Lived Experience Network 4 Dementia), a social and support group for people living with dementia and carers, run by thred CIC. The survey asks about a person’s experiences of living with dementia/caring for someone who is living with dementia. Find out more or complete the survey here.
(May 2023) 

Learning disability and dementia – quality of life research study
Winnie Tsang is a part-time PhD researcher and graduate teaching assistant at the University of Kent. She is looking to interview people with a diagnosis of a learning disability who are undergoing an investigation for dementia as part of a research study to find out more about their quality of life. The interview will last approximately 45 minutes and will be face-to-face. If you would like to know more about this study, or know people who may be suitable to take part, please email Winnie Tsang, wt66@kent.ac.uk
(May 2023) 

Experiences from people in the early stages of young onset dementia on using / not using technology for financial services
Have you used technology to manage your personal finances to check your balance, make transfers or bill payments, change your PIN or to make financial decisions? Or have you thought about using your mobile phone, tablet, computer, internet banking or a mobile banking application for financial services but decided against using it? Has the Covid-19 pandemic changed the way you access your bank accounts? Have you experienced more difficulty in accessing your local bank branch?

Whatever your views or experience, researchers from the University of Huddersfield would like to hear from you. To find out more information contact Yusra Shaikh at yusra.shaikh@hud.ac.uk
(March 2023)

How do you use technology to manage your young onset dementia?
University Hospital, Southampton is carrying out research to better understand how people with young onset dementia use digital health technology, such video consultations, mobile health apps, or to search the internet for health information or support. They are also interested in the benefits and the challenges of using digital health technology. They are looking for adults with young onset dementia to complete a one-off survey to share their thoughts. You do not need to use digital health technology to take part. Information on the research and a link to the survey can be found here. If you would like to complete the survey on paper or over the phone, or have any questions, please contact Dr Sarah Fearn S.Fearn@soton.ac.uk.
(February 2023) 

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

DYNAMIC (Dementia at YouNger Ages – Mapping Ideal Care): Improving social care for people with young onset dementia and their families 
The Young Dementia Network is proud to support the University of Bradford’s DYNAMIC study which aims to identify, prioritise and produce recommendations and resources to address improvements in social care for people with young onset dementia (dementia where symptoms begin under age of 65 years) and their families. The study will include interviews with 20-25 people living with young onset dementia and family/friend carers to find out about social care needs, experiences and support they would prefer. They will also carry out a national survey of staff with a role in social care, to find out about their awareness, knowledge and practice. For more information contact Professor Jan Oyebode, email j.oyebode@bradford.ac.uk

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