Meet the women fighting back against dementia | International Women’s Day 2019
Did you know that two thirds of people with dementia are women? It’s also the leading cause of death for women over the age of 80.
That’s why it’s important that as many women as possible get involved in dementia research.
This International Women’s day, we meet just three of the hundreds of women who are fighting back.
Research volunteer and champion
My mother had severe dementia by the end of her life. By the end she had forgotten who she was, how to feed herself and absolutely everything else.
This made me want to do something to help, and a wonderful friend of mine suggested that I leave my brain to research. It seemed a great way to stay on after I’ve gone.
I spoke to the National Institute for Health Research (NIHR) about donating my brain, and became involved in the world of dementia Research. This led to me being an early member of Join Dementia Research.
I talk to absolutely anyone I meet about Join Dementia Research: on trains, at the shops – even on holiday! I also attend events as a patient research ambassador to help spread the word.
Any one of us could get dementia, so research is important to make a difference. By championing Join Dementia Research I feel like I’m doing something positive and practical.
Dr Kirsten Moore
Senior Research Fellow, Marie Curie Palliative Care Research Department, UCL
When I was at university I was struck by how much ageism impacted on our society, yet was never challenged in the same way as other types of discrimination such as racism and sexism.
This led me to work at the National Ageing Research Institute in my home city of Melbourne. There I learnt more about dementia and the stigma that surrounds it.
Once I had my PhD I moved to London and joined the Marie Curie Palliative Care Research Department at UCL, where we have established the Centre for Dementia Palliative Care Research.
We are now two years into the Experiencing Loss and Planning Ahead Study (ELPAS). We’re focusing on the loss and grief that carers can often experience, because it tends not to be a central focus of dementia research or support.
With the help of Join Dementia Research, we recruited 150 family carers. We also surveyed memory clinics, Admiral nurses and care homes about how they help carers prepare for end of life and with grieving.
We will use the data we have collected to help services provide support to family and friend carers. It’s important we recognise that carers are likely to experience grief both before and after a relative with dementia dies.
Women are more likely to develop dementia. They are also more likely to be the family member, health care assistant or nurse who provides care.
This means dementia has a greater impact on the wellbeing of women. It’s vital that women get involved in research to influence the development of better ways of support people with dementia and their carers throughout the progression of disease.
Dr Joanne Rodda
Consultant Cognitive Psychiatrist
In my early years as a doctor I was lucky to work in a unit that was very research-active. I had the chance to get involved in studies and to learn more about dementia research.
This made me really interested in research, and I went on to complete a Master of Science in psychiatric research.
I now work full time as a clinician, but I still champion research. We make sure people in our memory service have the opportunity to discuss research at every stage of their journey.
We include a question about research in the consent form at the start of the assessment, and we mention it at diagnosis and post-diagnosis appointments. I try to use every opportunity I can to make sure that research is always considered.
Dementia disproportionately affects women across all regions of the world. As many people as possible need to be involved in dementia research, no matter who they are and what their background.
This will give us the best possible chance of generating the ideas and solutions that will make a difference.
We need many more people, especially those with dementia and their carers, to take part in research.
You can find out more about all the study opportunities available around the UK by registering with Join Dementia Research.