Getting back to our series of ‘Meet the Champions’, this week we meet U Hla Htay, who is a Join Dementia Research Champion in North West London.

UHlaHtayU Hla Htay is an active member of the dementia research community, describing himself as a full-time volunteer, he is a Research Network volunteer at Alzheimer’s Society, a Carer Ambassador at Carers UK, a trustee of Carers Network Westminster, a User panel member at the Central London Clinical Commissioning Group and a Carers Council member at the Central and North West London NHS Foundation Trust.

Htay’s wife was diagnosed with early onset Alzheimer’s type of dementia in 1997. He explains “As she was young, she was not an Old Age Psychiatric case. She was referred to a neurologist at St Mary’s hospital in West London”. When she was being tested at the hospital, Htay explains “I myself and our three sons, we looked at the literature about what is dementia, how do you access her medication and how do we arrange care for the long-term”.

Htay’s interest in dementia research begins

When it was confirmed his wife had dementia, this prompted his curiosity, questioning “What are the different types? What are the symptoms? How do we cope with this and deal with caring?” It was then that he joined the group which was formerly known as Quality Research in Dementia at Alzheimer’s Society, as he says he wanted to know “whether there were any medicines available at that time to cure dementia” and what care plan they needed. He comments that they thought then there would be medicine available in the next 5 to 10 years “to get rid of dementia”. This is where his interest in dementia research began.

Htay’s wife involved in a drug trial

Htay cared for his wife for 15 years. She passed away in April 2011. She received care on a cycle of six weeks in a care home and six weeks at home.

Htay explains how she got involved in a three month trial period of the drug Memantine around 2005/6. This drug is now used in the treatment of severe Alzheimer’s.

small pill“At that time Memantine was not available when my wife was at a care home, and at home the local Primary Care Trust would not agree to funding. Through Alzheimer’s Society and the National Hospital of Neurology and Neurosurgery we knew about the Memantine drug trial. My wife was getting to advanced stage. There was a research programme at the hospital which was in fact headed by the Consultant Neurologist who diagnosed my wife, so we consented to a Shared Care Protocol with the research programme and her GP surgery so that she would have the continuous medication when she was at the care home as well as at home”.

Htay’s involvement in dementia research

Htay explains how he attended Quality Research in Dementia workshops with his wife. As lay volunteers, they prioritised research proposals, and were on the selection panel to decide which proposals would be awarded funding from Alzheimer’s Society. Htay is still involved in this area of work now, and adds: “For those awarded funding for their research, we are then asked to monitor the projects”. When a project finishes, Htay is part of the team that is asked to disseminate the findings.

U Hla Htay_quote

Htay says “research is necessary to identify the cause of dementia”. He adds progress in research and where medicines are available are what prompt him to be interested in dementia research.

He is also involved in reviewing projects that have cross funding with Alzheimer’s Research UK and the Medical Research Council. Furthermore, he has been invited to be on steering committees and focus groups for dementia research at University College London, King’s College, London, LSE Social Policy Research Unit, Brains for Dementia Research and Newcastle Brain Tissue Resource.

Championing Join Dementia Research

With Htay’s involvement in many groups and committees, he says: “At these meetings, I always promote Join Dementia Research”.

“From my experience in 1998 we were looking for effective medicine available for a cure of dementia, but until now through involvement, in my perspective scientists are still going through the pathology of the disease, and with some drug discovery programme research, they are also researching different alternative medications. So for me, research is much more important and urgently needed with the UK and global ageing population that’s creeping on us. Some are healthier, but there are still more incidences of dementia in the UK as well. So we need to prioritise research for this”. He adds “Even yesterday when I was at a talk with some of the Carers’ Group at Tate Modern, I brought up the issue that I am supporting Join Dementia Research”. He also spoke of the service’s benefit to researchers: “they have this platform knowing about such a population to participate in their research programme, but of course they have to meet the selection criteria”.

Bringing Join Dementia Research to the international stage

Htay has even brought Join Dementia Research to the international stage, as he tells us “I am a member of the collaboration Cochrane Dementia and Cognitive Improvement Group, and a Cochrane Consumer Network representative at the International Alliance of Patients’ Organisations (IAPO), which has over 150 international patient association members, and every second year we have the IAPO congress; I mention about our work at the Alzheimer’s Society, Medical Research Council as well as Join Dementia Research because this is what we are doing in the UK. So whenever there is an opportunity, if the audience is acceptable, then I give that information”.

Htay also wears his Join Dementia Research t-shirt when he goes swimming!

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