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
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: email@example.com
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: firstname.lastname@example.org (November 2022)
Self-compassion in dementia Jessica Baggaley is a Trainee Clinical Psychologist at the University of Hull. She is conducting a research thesis on self-compassion in dementia using a one-off online questionnaire (paper copies are available on request). It asks questions relating to demographic information, self-compassion, wellbeing, self-esteem, and depression. It open to people of all ages living with any subtype of dementia. She is very keen to gain the perspectives of people living with young onset dementia. Click here to view the advertisement poster or click here to open the questionnaire which also provides further information about the study.
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.
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: email@example.com or click here for more information.
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: firstname.lastname@example.org
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: email@example.com
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: firstname.lastname@example.org
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: email@example.com
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: firstname.lastname@example.org
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: email@example.com 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: firstname.lastname@example.org
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.