by Elyse Couch
Anne’s body was tilting further and further forwards. I could see her nose getting closer to the stage in front of her, and I wasn’t the only one who had noticed. Richard Madeley and Judy Finnigan, who were on stage talking about Richard’s new book, were eyeing her nervously. Eventually, I realised that Anne was sound asleep. I jumped out of my seat at the side of the room and gently pushed her sleeping body upright in her chair. The talk carried on and Anne continued to sleep.
Anne had dementia and I was her carer. I was supporting her during an 11-day stay at the Ways with Words literary festival. Anne had been a Professor of Literature and had attended this festival for the last decade, but her dementia had progressed so much that she was no longer able to go on her own. I often took a seat out of the way; I wanted her to feel independent but also know I was there to keep her safe.
For these 11 days I lived in Anne’s world. I saw who she used to be when she attended this festival; visiting Waterstones to get to know the books of the authors whose talks she would see later that day, and then accosting them afterwards. She was no longer able to do the latter, so sent me in her place. I also saw how dementia was making this familiar place more confusing and frightening. Once, I waited outside a talk for the auditorium to empty before I went in to help her leave; when I got to her she was in tears because she thought I had forgotten her.
Overall, it was the trip of a lifetime for her, and for me. She was so delighted that she immediately started planning to go back next year. Unfortunately, Anne’s cognition and mobility declined so much that she never went back.
There are 850,000 people living with dementia in the UK; unlike Anne, most are diagnosed in the later stages of the disease. There are many people who have dementia who are not diagnosed at all, they are more likely to go into care homes or to die in hospital. The UK government wants to change this; however, despite almost a decade of initiatives only 60% of people who have dementia actually receive a diagnosis.
Being diagnosed with dementia is devastating. There are treatments which can slow the progression of the disease, but there is no cure. Family and friends of people with dementia describe watching their loved ones fade away. The world changes when you are diagnosed, you are left behind.
It is commonly argued that diagnosing dementia early gives people access to earlier treatment and support which can keep them living well for longer; however, there is very little robust, scientific evidence to support this. In my research I am investigating this further – I want to understand the benefits of diagnosing dementia early: Is early treatment the most important thing? Does it really help people to live better for longer? Or does it help people in a way that previous researchers haven’t considered before? I think these are important questions to answer, because it is the first step in understanding how to build a better world for people living with dementia. We need to understand how to care for people with dementia, and a significant part of this is understanding when the best time is to be diagnosed.
Anne’s dementia was diagnosed early. She had the opportunity to decide how she wanted to be cared for while she still had the capacity to do so. She decided she wanted specialist dementia care to be given in her own home. This meant that when her dementia had progressed she was still able to do the things she loved, just with more support.
I want every person with dementia to have the same opportunities that Anne had; to be able to decide how they want to live their life with dementia. I hope that by understanding more clearly the benefits of an early diagnosis, my research will help people make that first step. This knowledge will not just benefit the individual, it can also be used to create a more responsive and supportive health and social care system.
Facing up to the reality of a dementia diagnosis is hard. We see dementia as diminishing a life that was lived. I believe that there is still life to be lived and wonderful experiences to be had with dementia. We need to support people to live it.
Elyse Couch is an ESRC funded researcher from the King’s College London.
Her article, Building a better life with dementia, was a finalist in the 2019 Better Lives Writing Competition.
You can follow Elyse on Twitter at @elyse_couch
This year we are using the #ESRCBetterLives hashtag to highlight outstanding social science research and show how social science is relevant to everyone. Our Better Lives theme for May is ‘mental health’. Watch out for our tweets and tell us about research that has inspired you!