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 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 firstname.lastname@example.org or Professor Arlene Astell at email@example.com
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 Esther.Gerritzen@nottingham.ac.uk or click here to find out more.
The association between a parental diagnosis of young onset dementia and mental health in people between 15 and 24 years of age
Amy Lord is a Master’s student at the University of St Andrews. She is conducting a research study that aims to investigate whether there is an association between a parental diagnosis of young onset dementia and levels of quality of life, depression, anxiety, and stress in youth. She is interested in recruiting 15–24-year-olds who have a parent with young onset dementia, other long-lasting illnesses, and those with healthy parents. Participants that complete the study will have the choice to be entered into a prize draw to win one of two £25 Amazon vouchers. For more information click here or contact Amy Lord via email: firstname.lastname@example.org
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: email@example.com
PrepareD: understanding and improving support to help people with dementia and their carers prepare for advanced illness and end of life
A study funded by the Alzheimer’s Society. Researchers from the London School of Economics and Political Science are looking to interview people living with dementia and / or family carers who have been directly involved in:
an advance care planning discussion (or any discussion about future care with a GP or other professional)
completing an advance statement or advance directive
informal discussions between people with dementia and carers / family members about future care (even if there has been no discussion with professionals or ACP documentation)
Interviews would last an hour and could be conducted in person at your home or online, as you prefer. Taking part is entirely voluntary and you can change your mind at any time. All information you provide will be treated confidentially and no one will be identified in any reports produced. The research aims to improve support for people with dementia and their families. You will receive £30 as a thank you for your participation. For more information, contact Josie Dixon via email: J.E.Dixon@lse.ac.uk or tel: 07989 070777 or Jackie Damant, firstname.lastname@example.org
In search of a good death: What would a good death in dementia look like? The University of Kent and Dementia UK are undertaking a small study to explore what people with dementia see as constitutes a good death in light of a diagnosis of dementia. Understanding the perceptions of the person with a diagnosis can better inform healthcare policy and so practice.
To date, a good death in dementia is largely defined from a clinical perspective and often focuses on symptoms. We believe it is very important to bring the voice of people living with dementia to these discussions of death and dying, and drive user-led policy development.
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 to get involved or click here for 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.
Exploring smartphone and tablet use by people with memory problems Samantha Wilson is a PhD researcher at the University of Liverpool. She is conducting research to explore how adults with memory problems use their smartphones and tablets to support their everyday activities. Find out more hereor email email@example.com
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 firstname.lastname@example.org
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.