Dementia Studies
Get involved
If you would like to take part in any of the studies, below, or would like further information, please contact a member of the team. Alternatively you con complete our online form
You can also register with the national online database, Join Dementia Research (JDR). It is a place for people to register their interest in participating in dementia research. It helps people with dementia, their carers and/or anyone interested in dementia research to be matched to potentially-suitable studies.
Twitter: @beatdementia
Studies
'Join dementia research' is a national service that enables you to register your interest and be matched with suitable research studies. The service is aimed at people with dementia and their carers, but anyone with and without dementia over the age of 18 can sign up and people can register on behalf of someone else.
Why is dementia research important now?
Dementia is one of the biggest challenges we face today. The number of people with Alzheimer's disease, vascular dementia, and other types of dementia, is set to double over the next 30 years. Research offers hope. It is only through research that we can understand what causes the disease, develop effective treatments, improve care and hopefully one day find a cure.
But for research to progress we need more people to take part in more studies. Our knowledge of dementia currently lags behind that of other major conditions, such as cancer or heart disease. We have to close this gap.
Principal Investigator: Dr Kompancariel Kuruvilla
Human tissue is vital for dementia research but in the past was in short supply and is not covered in standard organ donation schemes. With the support of Alzheimer’s Society and Alzheimer’s Research UK, Brains for Dementia Research was set up in 2007 to establish a network of brain bank facilities across England and Wales.
It is now a ‘gold standard’ for brain tissue banking, linking five leading brain banks (based in London, Oxford, Newcastle, Bristol and Manchester) and a research Centre in Cardiff in a network of common standards, best practice and cooperation. This lays the foundation to enable the highest quality dementia research, which aims to find effective treatments for dementia.
In Kent, people with mild cognitive impairment or a diagnosis of dementia, and healthy participants, were supported to register for brain donation by the research team.
This is a unique initiative, as the memory, thinking and behavior of each prospective donor are monitored throughout their later life through regular assessments. This means that when the time comes for the donation to be made, researchers also have a detailed medical history and can see how brain changes correlate with symptoms. The Kent participants complete these assessments yearly.
The study is in follow up and closed to recruitment.
For further information please contact Senior Research Nurse: alison.welfare-wilson@nhs.net
Dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD) are related and complex illnesses with a wide range of distressing symptoms. People with DLB/PDD have worse quality of life, more complex symptoms, higher care costs, and are more sensitive to medications than people with Alzheimer’s disease (AD).
Acetylcholinesterase Inhibitor (AChEI) are commonly used medicines that can help people with DLB/PDD by improving day to day functioning and thinking abilities. Another drug which might help is Memantine. Memantine is a prescription drug used to treat moderate to severe confusion in Alzheimer’s disease and may help to improve memory, awareness and the ability to perform daily functions. However, it is not clear if adding Memantine to AChEI is beneficial for people with DLB/PDD.
The aim of this trial is to find out if adding Memantine to AChEI improves overall health and functioning for people with DLB or PDD.
Who can we include?
- Patients with a diagnosis or clinical features consistent with established consensus criteria for probable DLB or probable PDD
- Aged ≥ 55 years (no upper limit)
- MMSE score ≥ 8 (or comparable on other assessments)
- Receiving a stable dose of AChEI for ≥12 weeks prior to baseline, with no expected plans for dose adjustment during the trial period.
- If receiving any antiparkinsonian treatment, antidepressants, anxiolytics, antipsychotics or other drugs with significant psychotropic effects then dose must be stable for a minimum of 4 weeks prior to enrolment with no significant changes expected during the enrolment period.
- Patients who lack capacity to consent will be included in the trial to ensure that the sample is representative of the population that is likely to benefit. Patients who lack capacity will be required to have a personal/professional nominated representative who is able to give informed consent on the patient’s behalf.
- Females must be postmenopausal and not receiving IVF treatment or have undergone permanent sterilisation
- Patients with sufficient knowledge of the English language or support to understand the Patient Information Sheet and complete the trial assessments
What will this involve?
An initial discussion with the research team, then if they decide to proceed this is followed by a consent and screening visit (90 minutes), with a further visit with the research team at week 1, week 26 and week 52 lasting roughly 2-4 hours each. These visits will involve the researchers using standardised questionnaires to measure various things, including memory, symptoms, how participants are feeling, and how they have used the healthcare system. Participants also complete a brief daily diary.
Contact: jamie.cunningham6@nhs.net
