Team up for dementia

People with dementia and family carers are being urged to participate in a new 'TeamUp for Dementia' research service to boost dementia research in Ireland.

The new service has been created and managed by the Alzheimer Society of Ireland (ASI) in collaboration with the Dementia Research Network Ireland (DRNI). Launched last week, it will help people living with dementia and their families find and take part in dementia-related research projects across Ireland.

This project is part-funded by the Donate for Dementia fundraising and awareness week.

With less than 0.5% of people with dementia currently participating in research in Ireland, this service aims to increase participation and connect people with opportunities to take part in research in a safe way that puts service users and the public first. Studies in the area of dementia could include topics such as prevention, diagnosis, treatment, care, and cure.

Research is essential to help understand what causes dementia, develop effective treatments, improve care, create new interventions and even one day find a cure. The ASI is fully aware that people living with dementia and their families can benefit from participating in research; many people find it a rewarding experience and enjoy having their voice heard and contributing.

Chair of the ASI Cavan branch, Carole Beattie, explains why she signed up to contribute to the research: “I believe it gives hope to so many people. I cared for my husband, who was my soulmate, for eight years at home until he died in 2012. He was only 62 when he started on his journey with Alzheimer’s and he had just retired having run his own successful business for years and we were looking forward to travelling the world together and doing all the things we couldn’t do while he was working. I felt robbed of our future together. Shortly after he passed away, I also cared for my 93-year-old mother who also had dementia at home until she passed away six weeks before her 100th birthday."

As chair of the Cavan branch, Carole ran a monthly support Group for 10 years. "I regularly heard very poignant stories from family carers who have lost their loved ones and how they, having received the diagnosis, were so upset by the fact that nothing new had appeared on the market for years to at least give them some hope for the future. The worst part of a dementia diagnosis is that it evokes hopelessness. Now, with more research projects on the way, at least there is some hope."

Goals

The goals of the Teamup for Dementia service are to:

- Make research more accessible to people living with dementia and their families;

- Improve dementia research in Ireland;

- Ensure more people living with dementia and their families have their voices heard in research.

The launch of this new service comes alongside recent news of the aduhelm drug, about which the ASI is "cautiously optimistic".

There is also news that the Health Research Board (HRB) has funded a Dementia Clinical Trials Network (€1,000,000) to strengthen and increase the number of clinical trials available for people living with dementia in Ireland by 2026.

The ASI's interim policy and research manager, Dr Laura O’Philbin, said: “Research is essential to help understand what causes dementia, develop effective treatments, improve care, create new interventions and even one day find a cure. In Ireland there is currently no streamlined and inclusive way for people with dementia and their families to learn about and express their interest in taking part in dementia research. The ASI is delighted to play its part in supporting dementia research by developing this fantastic new service. We want everyone in our communities to have the option of taking part if they wish.”

Dementia Research Network Ireland chair and consultant physician in geriatric and stroke medicine, Prof Sean Kennelly, said: “The opportunity to participate in research is an important holistic part of living well with dementia. It’s important for clinicians and researchers to provide opportunities for people to take part in research and TeamUp For Dementia Research creates this link.

"With Ireland’s rapidly ageing demographic, an increased focus on dementia-related research is needed to firstly address the rising prevalence of dementia and secondly to ensure that people diagnosed with dementia and their families can live as well as possible. Ireland is not accepting the ‘status quo’ of no treatment or no cure for dementia. We are changing the narrative.”

* For more information see www.teamupfordementia.ie