We are the UK’s leading research charity aiming to defeat dementia. We power world class studies that give us the best chance of beating dementia sooner. Our pioneering work focuses on prevention, treatment and cure.
Yesterday, we read with empathic frustration the observation on dementia research progress at the end of The Times’ comment on research into hearing aids (Delaying Dementia, 16 July). It reads:
“More research into such treatments is desperately needed, particularly given the failure of biomedical research to make progress despite many billions of investment towards finding a cure. None of the drugs tried so far has worked. This year the fight against Alzheimer’s suffered yet another setback when the US drug company Biogen and its Japanese partner, Eisai, dropped trials on a much-hyped treatment for the disease. As things stand, only 5 per cent of dementia research worldwide focuses on care. Even a small rebalancing could make a big difference.”
In our response published today, we called for an increase in research funding for dementia in line with other serious diseases to see similar benefits in both care and treatment.
We need better treatments and more breakthroughs
Unfortunately, it has been 17 years since the last new drug for dementia was made available. We agree that people with dementia deserve more breakthroughs and better treatments.
However, it’s important to note that dementia research is not yet receiving the financial support needed to bring about life-changing treatments. Current funding levels do not account for the urgency required given the scale of the problem.
In 2010, the government committed to doubling dementia research funding to £66m a year. In 2015, it committed to spend £300m over five years.
This progress is welcome but falls short when compared with research budgets into other major health conditions, like cancer at £269m in 2015/16. The value of investment is underlined in these other areas through leaps forward in treatment and care.
People living with cancer today are benefiting from long-term and sustained funding, which began to increase in the 1970s. This long-term investment has led to treatment breakthroughs and means more people are now surviving cancer than ever before.
In comparison, it’s not hard to see why no one has ever survived dementia, and why hundreds of thousands of people with dementia across the country are not yet benefitting from better treatments.
Our call to government
Just 1% could make breakthroughs possible - YouTube
We are seeing other governments around the world increase research budgets for dementia – the US now spends 1.5% of the cost of dementia on research, Denmark spends 2.4% and Canada has pledged to spend 1%. We must see the UK step up to join this global effort to bring an end to the fear, harm and heartbreak of dementia.
The next Prime Minister should commit to prioritising dementia research and pledge just 1% to make breakthroughs possible and help to bring an end to this crisis.
Alzheimer’s and the other diseases that cause dementia develop in the brain decades before symptoms start to show. This poses a huge challenge for dementia researchers working hard to make breakthroughs possible for people affected by the condition.
So, why would a blood test for Alzheimer’s help?
At the moment doctors can only diagnose Alzheimer’s once people have developed symptoms. But at this point damage in the brain is already well underway.
Our brains are encased by the skull. It protects this precious organ from external damage, but it also makes it difficult for scientists to study the damaging processes that begin inside it. Even with the latest advances in brain scans, it’s hard to see what is happening inside the brain – and these scans can be expensive and complex.
A blood test, however, would be a simple, cost-effective, relatively non-invasive way to give key insights about brain changes in Alzheimer’s disease. It might be able to predict those with early memory problems who are most likely to go on to display symptoms of dementia.
If we can detect Alzheimer’s changes early and accurately, those affected by the disease could get involved in clinical trials. They could also receive potential new treatments at a time when they are most likely to benefit.
But the science required to develop a blood test is staggeringly complex. Factors as seemingly insignificant as the type of needle or vial used to collect blood samples have been found to influence the results.
So, what about other markers of disease?
Previous efforts to develop tests to spot early Alzheimer’s have measured levels of proteins in spinal fluid.
This is the fluid that bathes the brain and spinal cord. It comes into direct contact with the brain and we can examine this fluid to look for the hallmark proteins involved in Alzheimer’s disease.
However, to get at spinal fluid people need to have a procedure known as a lumbar puncture. While this is a safe and relatively straight forward, many people in the UK feel unsure about it. Our recent Dementia Attitudes Monitor found 54% of the public are reluctant to have a lumbar puncture – even when it’s routine part of healthcare in other countries.
A blood test is even simpler and we found that 91% of adults in the UK would be willing to have a one to detect early Alzheimer’s changes. With this level of support, it’s vital we explore blood tests further.
Previously we covered news about a blood test, which in 2014 was reported to predict which people with early memory problems would go on to develop Alzheimer’s, with an accuracy of 87%
While this research was an important step in the right direction, on its own this test isn’t yet accurate or reliable enough to support doctors making an Alzheimer’s diagnosis.
Scientists have been working tirelessly around the world over the past five years to improve blood tests. The challenge has now moved to look at which methods for analysing blood tests gives most consistent and most accurate results. This is vital for any test to be used not just to study large groups of people, but to give individuals meaningful information about their own disease.
This week at the world’s largest dementia conference, we heard promising new findings from teams across the world including Prof Jonathon Schott from our Insight 46 study. He and his team compared two different methods to measure amyloid – the hallmark Alzheimer’s protein – in blood.
Insight 46 is part of the UK’s longest-running birth cohort study is one example of how our expertise in collaboration has been proven successful. By joining forces with other key research organisations, Alzheimer’s Research UK is supporting, a unique research project involving volunteers who were all born on the same week in 1946, to help understand early markers of disease.
Prof Nick Fox and Prof Jonathon Schott, the lead researchers involved in Insight 46
Prof Schott showed that looking at the levels of normal and abnormal amyloid in the blood was a promising approach and one that could help to recruit the right people into clinical trials of new treatments more quickly. His work highlighted that amyloid blood tests could reduce the need for expensive PET brain scans, by helping identify those who really need them.
Not only this, but the hope would be that in the future, it could help doctors to highlight people who may have early signs of Alzheimer’s, who could then be referred for further tests.
Researchers working in this area are optimistic that a breakthrough will come in the next five years that would see these blood tests being used routinely to help pick up the early signs of a disease like Alzheimer’s.
What have we still got to do?
While the research is promising we’re not there yet. Although the methods for measuring proteins in the blood have improved dramatically, they’re still not as accurate as tests of spinal fluid.
Blood is just much noisier – it’s carrying many more proteins so it’s difficult to pick out the signals you need to see. But advances in technology are bringing new excitement to this vital area of research.
And it’s not just the amyloid protein that’s showing promise either – scientists are making great advances developing methods to detect other proteins that could give clues about the disease. These include proteins called tau and neurofilament light chain.
We will need to use the latest technologies, the smartest researchers and volunteers to help accelerate research into blood tests and other markers of disease.
Blood tests aren’t the only way we could pick up the early signs of diseases like Alzheimer’s. Bringing together a combination of approaches including genetics, blood tests, thinking assessments and other health indicators is likely to hold the most promise
With more global collaboration driving progress in this area, we hope to see promising breakthroughs in the years ahead.
Your support is vital for work like this. Donate today to help make breakthroughs possible in dementia research at alzres.uk/donate
‘Auntie, aren’t you the funniest?’ the family would say to Mum in response to her dry humour and quick wit. And despite the slow onset of vascular dementia, that devilish twinkle is still in her eyes – most recently sharing a giggle at how handsome Rock Hudson was in his heyday.
Mum was definitely the matriarch of the family. And the community.
She brought me and my three siblings up, she helped me raise my son. In fact, she helped bring up a lot of the family where we grew up.
‘Who’s ironed the shirts? Who’s got the PE kit?’, Mum kept us all in check.
Looking back now the early changes were so marginal and so easy to put down to other things – tiredness, stress. You could always find an explanation.
We’ve always been close. Living around the corner to Mum meant she’s always been a major influence in my life. When I had to choose a +1 for red carpets events, it would always be Mum. We’d do things in the community, charity and social events and visits.
It’s not so easy for Mum to keep up any more these days and she prefers to stay at home.
The first warning signs
The first signs that something was wrong was when Mum’s normal character seemed to dial up a few notches. At first our arguments would seem different, lasting for days rather than hours. I’d anguish over what I’d done so wrong to upset her.
She’d get confused when out in the car, even though she’d lived in the area her whole life. I vividly remember one day Mum came to pick me up from the set of Coronation Street, which she knew so well. But she got lost for two hours trying to find me, with no mobile phone. Now, of course, she doesn’t drive and giving up that part of her independence was tough to negotiate in the beginning.
The past became so present for Mum. Rather than focusing on the practicalities of day-to-day life, she’d tell stories about her childhood that she’d never talked about before. Seeking comfort in those memories that she could still find and enjoy.
Mum is a headstrong lady and looking back, she covered the cracks for about three years before her diagnosis. None of us knew much about dementia before that. But when the diagnosis came, it was there in black and white: vascular dementia.
Then life started to change for us.
Every day is different
Today, Mum still loves singing in Hindi, watching her soap operas and murder mysteries, and hearing about the family and our lives. But every day, every hour, every second can be different.
Some days we laugh and laugh together, some days Mum just can’t find comfort in anything we try to offer. And every day we learn something new about how to help her.
Caring for mum is a family affair – split between me, my brother, one of my sisters and my son Akshay, with caring support from a family friend. There’s also great support from the local health authority and district nurses. Between us we’ve learnt the art of patience and negotiation, and the value of information.
There is so much stigma about dementia, particularly in South Asian communities. This weighs strongly on mum and to this day, she’s struggled to accept her diagnosis.
We watch mum trying, and failing, to come to terms with the idea of dementia. And that’s heartbreaking. Because it’s been less painful for her to shy away from the perceived stigma of the diagnosis than to share it, and that’s where things need to change for future generations.
Be brave and speak out
Vascular dementia has definitely made Mum more socially isolated, and more and more of today’s older generation is facing this future. It’s also isolating for carers, like me and my siblings.
In our community it’s normal for everyone to know everyone else’s business, it’s a very social affair. But when you’re struggling to cover cracks in normal life, it can also create a real social pressure.
Talking about dementia, and the value of research, is vital. It’s such an important way to break down these stigmas.
If we can talk about dementia and share experiences without judgement or taboo, we can create support systems and help people contribute for longer within society. We can also help people accept that they might be changing and adapt the world to make their lives easier.
Dementia is caused by diseases, there is no shame in that. Everyone is human and at some stage in our lives we’ll all get ill.
My hope for the future is that if my family has been brave enough to speak out about dementia, we might help others. And together, we’ll break down that stigma and support research into this debilitating disease.
That’s why Alzheimer’s Research UK’s Talk Dementia film, available in Hindi and Urdu, is such a fantastic resource for the wider British communities.
If you’re affected by dementia, please watch the film and read the facts about dementia. Take a moment to talk to those around you and see what happens.
Back in 2013, the All-party Parliamentary Group (APPG) on Dementia published a report called ‘Dementia does not discriminate’. Drawing on the experiences of people from black, Asian and minority ethnic (BAME) communities, the APPG identified a number of aspects of dementia that hit these communities particularly hard.
People from BAME communities may be more likely to develop dementia than those from other ethnic backgrounds. This may be due to their higher risk of heart disease, stroke and diabetes. These are all risk factors for dementia.
Awareness and understanding of dementia in BAME communities is also lower than in the UK population as a whole. Some South Asian languages don’t have a word for dementia, and this can lead to myths about what causes it.
Sadly, these myths about dementia can make it less likely for someone to talk to their family and friends, get help or go to the doctor if they’re worried they might have dementia. So it’s really important that we do all we can to raise awareness and banish myth and misunderstanding.
In 2016, Alzheimer’s Research UK started working with with South Asian and Arabic communities in the East Midlands to find out more about how people in these communities viewed dementia, and what further information people needed and wanted.
While the groups we worked with had some very basic understanding of the condition, there was little awareness of symptoms other than memory loss, or that different diseases cause dementia. But there was a real desire to know more!
Through booklets, films and radio, people wanted to learn about dementia and importantly, they wanted to do it in their own language.
We’re pleased to say these discussions sparked the development of our handy pocket-sized leaflet ‘A quick guide to dementia’, now available in the following languages:
The leaflet has been extremely popular. A mailing promoting it to all GP surgeries in the UK resulted in orders for over 50,000 leaflets – a stunning response!
This gave us an appetite to go further and look at other ways to get people talking about dementia. We were delighted to be welcomed back into the South Asian communities in the West and East Midlands.
We were very lucky to be introduced to the Sahil Project in Coventry, whose members could not have been more helpful. We held a workshop with them, discussing how we could get people talking about dementia through film in a genuine, open and encouraging way.
Not only did we have a really productive workshop, some of the attendees also set aside their inhibitions and starred in the film itself – not to mention letting us take part in their very energetic seated yoga session!
The film features our Sahil Project stars sharing some delicious Indian food while chatting about dementia and how it has affected their relatives. They also deliver some really important messages:
Dementia is not something to be ashamed of.
It is not an inevitable part of ageing but is caused by diseases.
Memory loss is just one of many possible symptoms.
There are lifestyle changes we can make to reduce our risk of dementia.
All those who took part in the film have personal experience of dementia and we are particularly grateful to them for talking so openly about their experiences to camera.
They clearly believe, as we do, in the importance of talking about dementia within their communities, and that creating this film will take us one step closer to breaking down those barriers.
When my mum died of Alzheimer’s disease in 2016, I spoke at her funeral. I really wanted everyone to know how special and amazing my mum and dad’s marriage had been and how much they loved and cared for each other. I also wanted to let our friends and family know how proud I was of my dad, who had given up work as a taxi driver a few years earlier to care for my mum full-time.
Now, three years later, I am still just as proud of my dad as I was then. Probably even more proud. I’ve seen him go from becoming Mum’s carer, to now working as a Senior Care Worker in a nursing home. It’s a career change I don’t think any of us would have predicted, but one that makes total sense now and is probably the best thing to come out of the situation we found ourselves in.
I watched Dad lose the love of his life in one of the cruellest ways imaginable. Anyone who has been through the process of watching someone they love be diagnosed with and then eventually die of Alzheimer’s disease will know what I mean when I say that the grieving process starts years ahead of their eventual death.
A very different future to the one you imagined opens up and everything changes. My sister and I found this devastating, but for my dad it was even harder.
Mum and Dad had been together since their teens and were still so romantic, happy and loving together. They were always holding hands, hugging and laughing and they gave me and my sister a wonderful example of what a good, strong marriage should look like.
Don’t get me wrong, they weren’t perfect – obviously they argued like everyone else and I’m sure they’d say there were times they found things hard, but ultimately they were a really strong team and were always there for each other.
The Alzheimer’s diagnosis floored them, coming only four years after my mum had been diagnosed with breast cancer.
While cancer was horrible, scary and a massive shock, being told Mum had Alzheimer’s was a whole new ball game. We all knew there was no chance of treatment and recovery. Mum had got better from her cancer – she never would from this.
As the disease progressed, it became obvious that she needed full-time care.
Financially this was hard, and I can’t even imagine the emotional strain this must have put him under. He didn’t moan or complain about this though – to him this was the obvious step and what he wanted to do to make life better for Mum and to know she was safe.
Eventually Mum and Dad had to move from the three-bed semi-detached house they both loved, to a much smaller but more practical bungalow.As it turns out Mum wasn’t there long as she deteriorated to the point where she needed round the clock nursing care in a specialist home.Dad was devastated by this. He wanted to keep her at home and look after her as long as he was physically able. To come to the realisation that she needed to move somewhere else was so hard for him.
I know he felt like he was letting her down and it was awful to see him feeling that way. It took Dad a long time to accept that he had done everything he could.
Mum would 100 per cent have told him this herself if she was able, but of course she couldn’t, so the rest of us tried as hard as we could to help him come to terms with it.
After a few months Dad realised he wanted to carry on in his role as a carer, this time employed in a nursing home specialising in people with dementia.
Honestly, if you’d asked me, my sister and my mum if that would have been his future career we would have laughed, but I really think it was the job he was meant to do and Mum’s illness helped him see that.
Mum also used to be a carer and she’d come home after a long shift exhausted but knowing she’d helped people who really needed it. Dad used to tell her he didn’t know how she did it, yet here he is doing the same job and helping some of the most vulnerable people.
This Father’s Day I really want Dad to know how much I love him and how proud I am. Not just because of his job, but because of how he has dealt with the last few years.
By rights him and my mum should still be together, planning their next holiday to their beloved France and just pottering round the garden they both loved. Life has taken a very different turn for Dad but he has got up, brushed himself off and carried on.
Mum’s memory lives on and nobody could love her more. In sickness and in health indeed.
Alzheimer’s Research UK is running a special campaign called #ThisIsDad for Father’s Day, celebrating what makes dads special and the moments that define them.
You can join in by posting a picture of your dad on social media and explaining why he’s so special. Don’t forget to use the hashtag and tag in @ARUKnews on Twitter and AlzheimersResearchUK on Facebook and Instagram.
Around Father’s Day, many people across the country will be thanking their fathers for the support, love and very likely financial assistance they have given them throughout their lives. The relationship a father, or any individual, has with a child they care for is dynamic and complex. When we are young, fathers can help to support us in learning new skills, teach us how to eat and very often clean our mess up when we have made it. I have recently become a father and know how much time and energy these activities can take!
Interestingly, a very similar relationship to that of the father and child exists in the brain of each and every one of us. A group of cells found in the brain called astrocytes work, in some respects, like parents. They look after our nerve cells in the brain, called neurons, which give us our ability to remember things.
Both the parental astrocytes and the dependent neurons of the brain have important separate roles but depend on each other throughout their lives. They work in a partnership to allow the brain as a whole to perform its many functions.
Astrocytes: the fathers of the brain
In Alzheimer’s disease it has been shown that astrocytes sometimes don’t work as well as they could. Just like as a father, I might find looking after my child more difficult when she is ill, the astrocytes potentially struggle to look after the neurons in the brain in a similar situation.
All brain cells have batteries that give them energy to work. These batteries are called mitochondria. My research looks at how the batteries of astrocytes work in people who are affected by Alzheimer’s disease. I want to understand if the batteries of astrocytes affect their ability to maintain neurons.
How do I get the brain cells?
To get astrocytes that I study I cannot just remove them from living people as this might harm them. To get around this problem I ask people with Alzheimer’s disease and people without the condition to donate a small sample of skin. I can then take this skin sample and transform it into brain cells such as astrocytes and neurons. I can do this as every cell in the human body has the blueprints to be any other type of body cell.
While we are still in our mother’s womb all the different cells of the human body are given a certain set of instructions by chemical messengers that allows them to become a specific type of cell such as hair, skin, brain or bone. My research uses these chemical messengers to reprogram skin cells into different types of brain cells.
This reprogramming of skin cells allows me to study different types of brain cells including the parent and child cells. I then perform different types of experiments that allow me to figure out how well the batteries of these different types of brain cells work in people with and without Alzheimer’s disease.
What has my research shown, and what is the future?
Simon and his daughter
Any father knows that you need a lot of energy to look after a child. So far, my research seems to show that the batteries that give energy to father cells in the brain don’t work as well as they should in people that have Alzheimer’s disease. This is important as it may contribute to why people get memory problems in Alzheimer’s disease.
In future I hope to treat the fatherly astrocytes with different types of drugs that we know correct deficits in cell battery function. This will hopefully lead to the development of new treatments for Alzheimer’s disease.
Donate today to help us fund even more pioneering research.
This year you helped us achieve an incredible feat – almost 35,000 signatures asking for more funding for dementia research.
Alzheimer’s Research UK celebrated Dementia Action Week at the Prime Minister’s Office at 10 Downing Street. We were joined by television presenter and mathematician, Rachel Riley, and two of our committed supporters to hand over your signature for our Just 1% petition.
Carlie Pirie (left), Rachel Riley (middle), and Shaheen Larrieux (second to right) present petition alongside ALzheimer’s Research UK employees Helen Davies (second to left) and Emily Cook (right).
What it’s like behind the gates of No. 10
This was my first visit to No. 10 – not something I ever thought I’d get to do – and it all felt very surreal.
There are always crowds of tourists outside Downing Street, but once you’re through the gates and the airport-style security, it’s eerily quiet. Inside, there are only a handful of people – some press photographers and police officers.
Five of us walked through the gates – Rachel, our supporters, Carli Pirie and Shaheen Larrieux, our Head of Public Affairs, Helen Davies, and myself.
With every one of your signatures included in our orange box, our group walked up to that iconic door. It has a proper old-fashioned door knocker and made a satisfyingly impressive sound when we knocked.
After handing over our petition, we paused to take photos and commemorate the incredible journey that led us to this point.
When we first started our petition, we hoped to reach 10,000 signatures to trigger a response from government. We were blown away when you agreed so passionately with what we’re calling for that we had 34,401 people behind us!
I don’t think I’ve ever been so proud.
Rachel Riley: "Huge thanks" to Just 1% supporters - YouTube
So what comes next for our Just 1% campaign
Handing over your signatures on our petition is only the beginning.
Alzheimer’s Research UK is asking MPs for their support to include Just 1% for dementia research in the Challenge on Dementia and the Comprehensive Spending Review.
Disrupted sleep – a cause or consequence of Alzheimer’s?
It’s important to get enough sleep to stay healthy and feel well rested. We’ve all experienced a bad night’s sleep and probably know that it can have an impact on our memory and thinking skills in the short term. But could sleep problems have a long-term effect on the brain?
Growing evidence points to a link between poor quality of sleep and an increased risk of Alzheimer’s disease. We know that disturbed sleep can be one of the earliest signs of Alzheimer’s and it often occurs years before changes to memory and thinking skills start to show. But this is not the full story when it comes to sleep and dementia.
A number of studies have shown that interrupted sleep may speed up the progression of Alzheimer’s in the brain. But it’s difficult for researchers to tease apart cause and effect. They need to work out whether poor quality sleep might contribute to the development of the disease or vice-versa.
Research in mice has shown that continued lack of sleep can increase levels of amyloid, one of the hallmark proteins involved in Alzheimer’s. Amyloid protein clumps together in Alzheimer’s disease and triggers damage to the brain.
Many scientists believe that there may be a vicious cycle where sleep problems lead to amyloid build-up, which then further disrupts sleep, and so on.
How do researchers study sleep?
Dr Jason Rihel at University College London is investigating how amyloid in the brain affects sleep patterns.
To do this, Dr Rihel’s team are working with zebrafish. Zebrafish are well suited to sleep studies because they have similar brain circuitry to that thought to regulate sleep in people. With your support, his team hopes to discover the connection between amyloid, nerve cells and sleep disruption in dementia.
Track sleep patterns in zebrafish - YouTube
Dr Rihel can automatically track sleep patterns in zebrafish using infrared light.
Young zebrafish have see-through brains, meaning researchers can see their brain activity really clearly. Dr Rihel and his team will now identify key brain cells that react to amyloid and regulate sleep patterns. In the long term, they hope that these studies will reveal targets for new drugs that could tackle Alzheimer’s disease.
How does sleep affect amyloid build up?
Like with most things that build up, there are two ways that the brain can end up with too much amyloid. Either the body keeps making more of it, or it’s not very good at getting rid of it.
The amount of amyloid in the brain goes up and down throughout the day. Well-rested mice have the highest amyloid levels when they’re awake and the lowest during sleep. Disrupt sleep and this cycle is broken, causing amyloid levels to continue to rise.
Last year, the same was shown in people in a small study where volunteers had brain scans after a night of restful sleep and after a night of interrupted sleep.
If nerve cells make amyloid when they are active, then lack of sleep could be driving up the activity of these cells. This could be one way that prolonged sleep problems contribute to the risk of Alzheimer’s.
But research has also shown that amyloid is cleared from the brain more efficiently when we’re asleep. So as well as causing us to make more amyloid, sleep problems may also stop us from clearing it away.
Two main biological systems remove waste from the brain; the glymphatic system and microglia cells. The recently-discovered glymphatic system works like a series of drainage canals, while microglia are the brain’s immune cells, which act more like binmen that actively remove rubbish.
Studies have shown that drainage through the glymphatic canals can increase by as much as 60% during certain stages of sleep. If this process is disrupted, it could slow down amyloid and other waste products being moved out of the brain.
The glymphatic system: Spinal fluid flows between blood vessels in the brain, creating a current that clears away amyloid.
In a series of experiments researchers, led by Prof William Wisden, will investigate the different processes that are going on in the brain during sleep.
Their work will help us better understand the importance the brain’s cleaning mechanisms in reducing the risk of dementia. In part they will focus on whether the hormones that control the clearance of amyloid could be suitable targets for future treatments.
At this point, we can’t say whether improving sleep can reduce the risk of developing Alzheimer’s. But this is an important and active area of research and scientists are making crucial progress unravelling what could be a key factor affecting our risk of dementia.
Donate today to help us fund even more pioneering research.
Let’s play 20 questions. Well 22. Because in fewer than two dozen questions, we’re aiming to find out as much as we can about what motivates you, and thousands of others like you, to support our work at Alzheimer’s Research UK.
It’s not a stretch for us to work out that you, like us, want to make a difference for people living with dementia now and in the future. But the more detail in which we can understand ‘why dementia’ and ‘why ARUK’ will help us deliver what all our supporters want and need to see from us.
Alzheimer’s Research UK is one of the fastest-growing charities in the UK as increasing numbers of people join us in our mission. We are almost entirely funded by supporters like you. And your generosity – from a pound in a pot, to 26 miles in a marathon – makes possible everything we do.
Of course, research comes first and we’re proud to be consistently increasing our support of pioneering projects and scientific teams across the UK year after year. With your backing, we’ve helped to double the size of the dementia research sector in recent years, and the potential for breakthroughs has never been greater.
But outside the science, our health information, appeals, campaigns, Infoline service, fundraising initiatives and more besides are shaped by what is important to you. So it stands to reason, as an organisation that values the importance of evidence to make the right decisions, that we know what you think and feel about ARUK, dementia and charity support more generally. We can then be sure that we talk to you effectively, and focus on what matters to all of us.
Enter the 2019 ARUK Supporter Survey, which is just a click away from this blog, or you may already have received it in your inbox. We’d like you to take twenty minutes when you can to complete the survey and help put us in the picture about your views on ARUK and the wider charity sector.
We’ll also ask you about any experience you might have of dementia and the impact it had on you. And we have some questions about what you value in life, and what you feel to be the big causes that need help in 2019.
As thousands of people take part in the survey in the coming weeks, we’ll learn how to better focus our resources on what matters to you. We can ensure we meet your needs for information effectively, and, above all, we can push on with our mission to bring a about life-changing treatment for dementia.
Thank you, as ever, for your support and we look forward to hearing from you – if you received a link via email please use that to take part, otherwise you can take part here.
I’ve sat down to write about my grandmother several times over the last few months, and each time I’m unsure what to say. How did my nan fit into my story? Or did I just come into the end of hers? My nan is gone now, but I like to think her story isn’t over. One of my favourite authors said that “no one is actually dead until the ripples they cause in the world die away”. In a sense, her story isn’t over yet.
I only had one grandparent growing up. This was my paternal grandmother. She was always very physically active, with a full head of brown hair and a determined attitude. She’d constantly be travelling between her three children’s homes; doing the chores and helping with the grandkids.
She was feisty and stubborn and she seemed immortal. The entire extended family used to joke that she would live forever. A small part of me was convinced she would.
Then she started to forget things.
She would get confused about which bus to catch. She’d do the washing up twice because she’d forget the first time. She’d forget to come visit or pick up the groceries. She’d get our names mixed up.
She was old, so we all laughed it off. But it got worse and worse, and eventually her kids got worried enough to take her to the GP. The diagnosis came. Alzheimer’s disease. She likely had a few years left.
Difficult questions started. Could she be trusted with her own money? How long could she safely live alone, having been fiercely independent for decades?
Money would go missing from her bank account. She would leave the house in the middle of the night and forget to eat or take her pills.
Eventually my parents made the tough call and moved her into a nursing home.
Looking back, I didn’t cope well with my nan’s dementia. I fled to the other side of the country and studied pharmacology at university, with a special focus on neurodegenerative disorders like Alzheimer’s disease.
Four years of study later and nan was still with us, even though I had no answers about her condition. The scientific community has dozens of theories but no life-changing treatments yet. Ways to slow the symptoms but no cures.
However, the thing I did take away from university was that more dementia research is needed so that scientists can make those breakthroughs.
Even towards the end of her life, my nan lived up to her reputation. The doctors gave her a few years at best, but she was still alive ten years after her diagnosis. Eventually her brain seemed to give up completely and she died in 2017, aged 83.
I have many memories of my nan, but one stands out. I was back from university for Christmas, and I went with my dad to visit her. She was curled up in her armchair in the home, a space she never moved from. Dad chatted to her for an hour but he had no response until she lifted her head and looked at him.
In the first fully coherent thing she had said in around five years, in a voice that sounded like the immortal lady that used to put me to bed, she said, “thank you for doing this for me.”
My degree revealed that people with Alzheimer’s would occasionally have moments of full clarity like this one. She immediately went back to into a huddle, once again not recognising her only son.
But for that one moment she reminded us all that she was still my nan, and she was aware of what we had done to help her.
My postgraduate education has shown me that the largest issue regarding Alzheimer’s disease is the lack of understanding and research. I’m convinced more research is needed to tackle this disease, which is why I support Alzheimer’s Research UK.