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

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) 

The benefits and challenges of social media for people with early-stage dementia: The perspectives of support service providers
Dr Catherine Talbot, Senior Lecturer in Psychology at Bournemouth University, is conducting a research study exploring support service providers’ attitudes towards people with early-stage dementia using social media. Her online survey takes approximately 10 minutes to complete and asks questions about the perceived value of social media, any experiences of supporting people with dementia to use it, and any training / resources that is available. Participants will have the opportunity to enter a prize draw to win shopping vouchers. Click here to find out more or to take part in the survey.
(January 2023)

Exploring post-diagnostic services available to informal caregivers of people living with young onset dementia in the aftermath of Covid-19 and how they facilitate caregiver resilience
Jessica Bird, a student at the University of Liverpool, is conducting a research project to explore the post-diagnostic services available to informal caregivers of people living with young onset dementia in the aftermath of Covid-19. Her study aims to explore the types of post-diagnostic support available, how adequate these services are and how Covid-19 has impacted them. The research will consist of recorded online interviews via Zoom, lasting 40-60 minutes. For more information, click here or email: hljbird@liverpool.ac.uk
(January 2023)

Research study for people with early-stage dementia
Cassandra Seah, a PhD student at Imperial College, is looking for people with early-stage dementia and their family members/carers to take part in a research project. The study involves doing a 10-minute mindfulness activity daily via an Alexa device, as a pair, before answering a few questions. Each pair of participants will receive an £80 Marks and Spencer voucher. An occupational therapist will do a virtual cognitive assessment to determine early-stage dementia. There will also be assessments and interviews before and after the study to help understand user preferences and the effects of the activities on their stress, worries, sense of control, and relatedness with each other. For more information, click here or if you are interested in taking part, please email Cassandra Seah: c.seah@imperial.ac.uk 
(January 2023)

Is owning a pet is a positive or negative for people with young onset dementia?
Isla Scullion, a psychology student at the University of the West of Scotland, is carrying out a research study as part of her dissertation to investigate whether owning a pet is a positive or negative for people with young onset dementia. She is looking to interview the family members or close friends of people who have been diagnosed with young onset dementia and owns/have a close relationship with a pet. They must be willing to take part in an online interview using Microsoft Teams which should take no longer than an hour.  For more information, please contact Isla Scullion at B00374877@studentmail.uws.ac.uk.
(January 2023)

Nurses who have current or previous experience working with people with young onset dementia in the UK
Stephanie Browne is a third-year doctoral student at Bangor University. She is conducting research into the experiences of nurses working with people with young onset dementia in the UK. She hopes that by learning more about these experiences, we may be able to help local services develop strategies to support nurses working in these roles, promote their wellbeing and enhance the service and care provided to people living with young onset dementia. For more information, click here or email Stephanie Browne: stb20fyg@bangor.ac.uk
(November 2022)

The care of people living with dementia in mental health wards
Sometimes if a person with dementia becomes very distressed, perhaps because they experiencing frightening symptoms, or they feel scared or very low in mood, they may behave in ways that places themselves or others at risk of harm. When health and social care professionals are concerned about a person’s mental wellbeing and their safety, they may be admitted to a mental health ward for a period of time. There has been very little research looking at what care is like on mental health wards. Before we start any research it’s important to know what people think are the priorities- where should we start?

If you have had experience of care on a mental health ward or support a person with dementia who has been cared for within a mental health ward, please could you complete this short survey to tell us what you think are the priorities for researchers. Click here. For more information, please contact Emma Wolverson: emma.wolverson@dementiauk.org
(November 2022)

Palliative and end of life care in rural and remote areas for people with dementia, stroke and cancer
Many older people live in rural and remote areas and require palliative care, but frequently they are less likely to receive the care they need. Researchers from Liverpool John Moores University are looking to speak to people from England, Wales, Scotland and Ireland who are currently caring for an older person with life-limiting illness living in a rural or remote location. They would like to find out about your experiences of caring as well as your perspectives on the support you have received so far. If you would like more information, please click here or contact Dr Caroline Mogan (Researcher) by email: C.E.Mogan@ljmu.ac.uk.
(November 2022)

Are you a family carer of someone living in a care home during the COVID-19 pandemic?
Researchers at the London School of Economics are researching how care homes in England developed and implemented their visiting policies during the COVID-19 pandemic, and the factors that helped to shape this. They would like to speak to family members or friends of care home residents to understand how care homes can improve how visiting policies are developed during public health emergencies such as the COVID-19 pandemic. To discuss taking part, please email: e.stubbs@lse.ac.uk or click here for more information.
(October 2022)

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

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.  For more information, email Patricia Masterson Algar: 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. Contact: Anna Crawford, Research Assistant if you would like more information.

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