Alzheimer’s disease cries out for star-studded fundraising
Roula Khalaf, Editor of the FT, selects her favourite stories in this weekly newsletter.
My mother worked until she was 88 as a dean at New York Institute of Technology. Six months after she retired she forgot how to walk. As she did not have to get up for school any more, walking had become superfluous.
She now sits at home in a wheelchair, staring into space. She does recognise me and other close family members, but she answers our questions as if she is in a dream.
Even though she is still alive, and in fact still physically healthy, I have lost my mother, my mentor, my supporter and my best friend. Every day I miss her wise counsel, good judgment and unconditional love.
She was always worried that she would get Alzheimer’s because my grandfather had died from it. Often, when I was sat next to doctors at social events, I would ask them if they thought my mother would develop Alzheimer’s based on the facts I presented to them. Invariably they would ask “how old is she?” I would reply that she was 81, 82 or 83 etc. and they would say “if she has lived this long without it, she probably won’t get it now”.
I believe that she did in fact have Alzheimer’s for a long time before it became apparent, but because she was working, and her mind and body were engaged, she managed to stave it off. In any case, as soon as she left her job, her mind started leaving her.
I know that realistically there is nothing I can do for her now except go to New York to visit her every month. She is receiving all the available drugs, which we know do not cure at all, but sometimes slow down the process.
Due to the feeling of helplessness, I decided I had to do something. So I joined the board of Dementia UK in January 2015.
At that point it struck me that people did not seem to be talking about Alzheimer’s and dementia, or raising money for it at high-profile events, in the same way as they had in the past in connection with HIV/Aids. I therefore decided to focus on what I do best.
I went on to conceive and chair a first bi-annual fundraising ball in September 2016 in London that raised £250,000 in one night. I have been asked to repeat it and the event will be held on June 13.
I have mentioned the Alzheimer’s ball to illustrate how high profile, unusual events can capture the attention of many potential donors — I have witnessed first-hand in America the benefits that such fundraising efforts can bring. When I was younger, HIV/Aids had just started spreading at a relatively rapid rate. It attracted the attention of the American public, including actors, pop stars and high-profile fashion folk.
All of a sudden HIV/Aids became a fashionable cause and there were many well-attended events to raise money. Today, there is such good medication for this terrible disease that sufferers can live a long and healthy life.
I wonder why the same is not true for dementia. This could be because without any “sex appeal” or “celebrity high-profile” survivors of Alzheimer’s or dementia, there is nobody to tell their story.
Indeed, there is nobody to promote the research and personify a campaign for more funding in the way there has been for HIV/Aids and cancer, and numerous other killer diseases in the past.
There is no doubt that as we are all living longer and that an increasing number of people will be diagnosed with dementia, which tends to afflict people in their 80s or 90s.
In the 1970s, a diagnosis of cancer was considered a death sentence. Now, because of a tremendous research effort, cancer survival rates for many common cancers have vastly improved.
I want to see this kind of transformational change for dementia.
Decades of underfunding have meant that dementia research is lagging far behind that for other health conditions such as HIV. Such research is also 20 years behind the progress being made with cancer. Dementia is killing more people every year. It is a condition we cannot prevent or cure and was the leading cause of death in the UK in 2017.
Across the world, someone develops a new case of dementia every 3 seconds, according to research published by Alzheimer’s Disease International; in the UK someone develops dementia every three minutes.
Like my mother, about 50 million people worldwide are living with dementia every day and this number will almost double every 20 years, reaching 82m in 2030 and 152m in 2050, according to WHO estimates.
A century ago, not long before my mother was born, people with diabetes or tuberculosis would have probably died quickly — but we found treatments or vaccines for them in the early 20th century.
My wish and hope for 2018 and beyond is that we can make the same difference in the 21st century with dementia.