Case study: Tenterden resident helping dementia researchers in Kent
Gill Gladman is a 75 year old woman from Tenterden, Kent who is actively involved in dementia research as a healthy volunteer.
Eight years ago Gill signed up to a research project called Brains for Dementia Research where people with a diagnosis of dementia, as well as healthy volunteers like Gill, pledge to donate their brain after they die. Brains for Dementia Research was set up in 2007 by the Alzheimer’s Society and Alzheimer’s Research UK to establish a network of brain bank facilities across England and Wales. Researchers can apply for access to brain tissue samples or data to use in their own research from this bank.
Brain banks are needed because much of the research into dementia relies on post-mortem examination of donated brain tissue. It is difficult to conduct research into human brains and in the past human tissue has been in short supply and not covered in standard organ donation schemes.
With Brains for Dementia Research, researchers are provided with high-quality brain tissue to enable them to investigate the basic underlying causes of dementia and compare changes that have taken place in the brains of people with and without a diagnosis of dementia.
Gill says: “I found out about the Brains for Dementia Research project via a family member who mentioned it on Facebook. It seemed like an obvious thing to do once it was explained to us, so my husband and I signed up to donate our brains after we die. If we can help find a cure for dementia then let’s do it.
“Unfortunately when my husband died he was unable to donate his brain which has made me want to donate twice as much”.
Brains for Dementia Research s now closed to recruitment. Over 3,300 volunteers have enrolled including 49 from Kent. Assistant Clinical Research Practitioner Rachel Smith from Kent and Medway NHS and Social Care Partnership Trust (KMPT) regularly visit Gill at home to complete lifestyle questionnaires which look at memory, thinking, behaviour and daily living activity.
Rachel says: “My main motivation for working in research was to improve the care and services available for people with dementia. It has been a privilege to be able to contribute to BDR as it provides high-quality research projects with the rich data essential in advancing knowledge of dementia and developing effective treatments. I am very grateful to the volunteers for not only choosing to donate but for taking the time to provide detailed and valuable research data through completing the annual assessments with me.”
Participants are monitored for memory, cognition and behaviour throughout their lives. These regular reviews of participants help researchers capture the earliest changes linked with dementia and give researchers an opportunity to find out more about the links between ageing and cognition.
Gill says: “It was gratifying and reassuring to find that I had a better memory than my son and was quicker than my researcher at one of the number puzzles at my last assessment.
“Research is essential to help find a cure. I know donating your brain isn't for everyone, but for me it's a great way to carry on making a difference once I'm gone”.
Participation in Brains for Dementia Research is entirely voluntary and donors can withdraw at any time without giving a reason.
Gill continues: “Having someone visit or telephone once a year to do the questionnaires is a pleasant thing to do and there are no negatives at all. People do not know enough about dementia research. I think if they knew more about it they would take part.”
For more information visit the Brains for Dementia Research website.
There are other ways people can support dementia research. Join Dementia Research is a national service where you can register your interest in dementia studies. You can find out more at www.joindementiaresearch.nihr.ac.uk
You can sign up online, over the phone or by post. The service is funded by the Department of Health and Social Care and delivered in partnership with the National Institute for Health Research (NIHR), Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society.
Once registered, you can decide if you would like to participate in the studies you match to on a case-by-case basis, with no obligation. Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia and their carers.
Amy Hammond, Clinical Research Team Leader for Dementia at Kent & Medway NHS and Social Care Partnership Trust leads a team of Clinical Research Practitioners who are trained specifically to deliver dementia research to those living across Kent. The trust supports a number of NIHR portfolio research studies and welcomes anyone who is interested in taking part in dementia research as a participant or carer to make contact with the research department (firstname.lastname@example.org), or by signing up to Join Dementia Research.
Amy states:“I am extremely passionate about offering the people of Kent the opportunity to be involved in high quality dementia research. Research involvement isn’t for everyone, but it about allowing the choice and opportunity to take part in research that is most important to me.”