Alzheimer's Society

‘Having seen the impact of dementia on the lives of my family and friends, I wish I could have changed their experience. I know that I want to be a part of a society that is working towards a future where dementia no longer devastates lives.’ Jade Trafford, our Regional Fundraising Manager for the North West, shares her career journey and what motivates her work at the Society. 'I joined Alzheimer’s Society as a Supporter Engagement Co-ordinator which was a brilliant role supporting our fundraisers. 'I then applied for a secondment to learn more about being a Regional Fundraiser, and became the Regional Fundraiser for Lancashire and Cumbria, a role I thoroughly enjoyed as I helped and empowered our amazing supporters to raise funds and awareness for Alzheimer’s Society. ‘At the start of this year, I progressed to Regional Fundraising Manager for the North West. I’ve been in this role for a couple of months, and I’m enjoying every challenge and opportunity to learn with my incredible team. ‘I come to work every day knowing that I am working with the most dedicated, passionate, and driven people and together we are changing the landscape of dementia which makes me feel very proud to work for Alzheimer's Society. ‘One piece of advice I would give anyone considering a career at the Society is to keep an open mind about your career progression. I’ve found that there is a lot of support for professional development at Alzheimer’s Society, with a wealth of opportunities to learn, grow and explore different roles.'

‘Finding out you have dementia is difficult news, but what’s important is who you have in the background supporting you.' At 63, Jitendra was finishing his studying for a law degree when concerns about his memory problems prompted him to pay a visit to his GP. ‘If I was trying to make a phone call, by the time I went to the telephone I had forgotten what I was doing there. ‘This might sound minor, but the problems were getting worse and worse. ‘My GP suggested the changes were to do with ageing. He did an initial memory test, asking basic questions, and I found myself struggling, but he said, “Relax and everything should be fine.” ‘I knew I wasn’t happy, so I went back to the GP and said it didn’t feel like an ageing problem to me and my family.’ Jitendra was referred to a consultant psychiatrist, who did some basic examinations and referred him for MRI and CT scans. ‘When the results finally came back, she told me, “You are right.” She diagnosed dementia. She said the scans had revealed a problem with my brain, and prescribed medication. ‘When I heard that I had dementia, it was a shock even though I knew something was wrong. I thought my life was finished and that everything good had finished. ‘Then Judith from Alzheimer’s Society came to see me at my home. She was courteous and helpful. She helped me understand that I had nothing to worry about. ‘I was still focused on the loss of memory and forgetting things, but the good news was that because of the medication the doctor was giving me, I was getting on all right.’ Jitendra is keen to send a positive message to others in Asian communities who are frightened they may have dementia. ‘I know there are a lot of people in Asian society who are suffering with this, but they don’t want to come forward. They don’t want to go to the doctor and explain what the problem is, especially the women but even the men. ‘They think if they are diagnosed with this problem, there will be a stigma that in their family this person is suffering from memory loss. ‘They worry they can be stereotyped and not taken seriously or discarded from the family. ‘Alzheimer’s Society staff are trained in these situations for this kind of work. They can give us all confidence. ‘When I first heard what was wrong with me, I thought, “I’m just at the last stage of life,” but when I met Judith, that changed. She gave me so much encouragement.'

‘I was told I was too young for dementia and my symptoms were menopause.’ A major difference between men and women as they get older is the menopause. This is especially relevant for people with young onset dementia as early symptoms can be hard to recognise or not obvious, so can be put down to other factors such as stress, difficulties with relationships or work, or the menopause. This was the experience of Anita who had to fight four years for a diagnosis as her symptoms were initially dismissed as the menopause. The lack of an accurate and early dementia diagnosis had huge financial implications for her household as Anita was unable to work. Now Anita is determined to use her voice to shout about the importance of accurate diagnosis so that early onset dementia symptoms are not confused with and assumed to be caused by the menopause. Have you had a similar experience of dementia symptoms being put down to something else, such as menopause? #IWD

'I knew a lot about the science of dementia, but seeing it in real life was really hard.' Eleanor is part of a new wave of research students aiming to progress future treatment breakthroughs. She first learnt about dementia during her undergraduate studies, which coincided with her nan, Pauline, receiving her own diagnosis. 'Like many families, we attributed initial changes in Nan to normal ageing. That was until her repetitiveness became more regular, repeating the same stories and phrases, so my mum and siblings took her to the doctors.' 'Nan’s diagnosis came during my undergraduate studies. It was so painful to see my nan’s personality stripped away by something we couldn’t control, and every time I came home during the uni holidays, she had declined further.’ Eleanor and her nan had a strong connection, and she holds so many precious memories they shared together. It’s these memories of her nan’s true personality pre-diagnosis that is driving Eleanor to make a change for families in the future through her research. 'I hope that my work aids our understanding of the mechanisms involved in cognitive decline and ultimately leads to the development of new treatments.' Eleanor is a researcher at one of our three new Doctoral Training Centres. These will offer PhD students unique access to activity across the centres – widening their options for peer support, networking, knowledge sharing, training, and equipment. Research will beat dementia.

‘The occasion of my mum and dad learning of their dementia diagnosis was not handled with much human empathy.’ Yvonne’s mum, Mary, and dad, Harry, lived with dementia after both being diagnosed on the same day in 2009. This experience lacked empathy and convinced Yvone more needs to be done to help people with dementia and their carers. ‘They underwent tests with the Memory Clinic. Afterwards they met with the consultant who told them, very matter of factly and starkly, that Dad had vascular dementia and Mum had Alzheimer's. It came as a shock.' Yvonne noticed certain things about her mum’s behaviour that gave her pause for thought and concern. ‘She would ask me to help her find her glasses. Once I found them tucked under the mattress, and this began to increase. She asked my brother "Have you taken your A-levels yet?", he replied with “how old do you think I am?" and she replied,'17'· My brother was 48 at the time’. ‘My mum was a beautiful woman, inside and out, and everyone said she looked like the actress Hedy Lamar, reputedly the most beautiful woman in the world! She was bright, gentle and kind.’ ‘The emotional journey was by far the most challenging. To see the two people who mean the most in the world to you decline mentally almost daily is heartbreaking. I am not alone. Thousands of people experience the same trauma and I’m sure like me shed copious tears – in private of course.‘ Yvonne’s dad died in 2010 and her mum 4 years later. In their memory, Yvonne is deciding to leave a gift in her will to the Alzheimer’s Society. ‘Many people living with dementia have made a huge contribution to this country, and deserve every assistance possible to cope with this devastating disease. ‘I would like my gift to provide whatever people need to make them feel valued members of society, for all they have done in their lives for the rest of us.’

In February last year we launched our partnership with Travis Perkins, and we’re delighted to share that they have raised over £114,000 - an incredible total that will make a real difference for people affected by dementia. Over the last year Travis Perkins colleagues have been fundraising in branch and got involved in the Forget Me Not Appeal and Elf Day. They’ve also taken on incredible challenges including the Three Peaks Challenge and the London Marathon, as well as organising their own events like golf days and darts nights across the country. We’ve been blown away by their commitment to helping to end the devastation caused by dementia. We can’t wait to see what the next year has in store! Thank you Travis Perkins 💙

‘Ramadan is a vital act of worship and serves as a reminder of the core values of faith, belief, patience, and self-discipline, but it’s not meant to cause hardship. It’s important to make the most of these provisions in a way that best supports the person with dementia and your family.’ Sania’s Nana Abu was a hard-working businessman, a devout Muslim and his family and community were the most important parts of his life. Following his diagnosis of Alzheimer’s disease, his family made sure he felt this way for as long as possible. ‘We faced the usual dilemma of my Nana Abu wanting to fast, while the rest of the family was concerned about his health. ‘There are exceptions for those who are unable to fast due to various reasons, including medical conditions. So, if my Nana Abu wanted to fast, we supported him. And if he broke his fast with a cup of tea because he had forgotten, we understood that it was okay because God recognised his intention. There are many other meaningful ways they can participate in acts of worship, each of which holds great reward. ‘As Muslims, we believe that the intention behind an action is just as valuable as completing the action itself. If someone sets out to do something good, they receive the same reward as if they had done it. We believe that God knows the intentions behind all actions. 'On Eid, we would all gather, but Nana Abu would still have his own space, and everyone would spend time with him in smaller groups. He was always involved in everything. ‘The special evening prayers can make the mosque very busy. To make sure my Nana Abu could still be a part of the prayers, we would take him to the mosque during the quieter hours of the day so he could experience the spiritual connection without feeling overwhelmed. ‘Ramadan is not only a time for fasting, but also a period for deep reflection, spiritual renewal, and devotion to God. Fasting goes beyond merely abstaining from food and drink—it is a way to detach from the distractions of the world, cleanse the soul, and strengthen the connection with God.’

‘What is dementia?’ is a question we get asked a lot. Here’s everything you need to know about dementia, including what it is, the causes, and rarer types. The word 'dementia' describes a group of symptoms that affect memory, problem-solving, language and behaviour. Dementia is not a natural part of ageing. It is caused when a disease damages nerve cells in the brain. As more nerve cells are damaged, the brain becomes less able to work properly. Around 19 out of 20 people with dementia have 1 of 4 main types; Alzheimer’s disease, vascular dementia, dementia with Lewy Bodies, and frontotemporal dementia. Alzheimer's disease is the most common type of dementia, but there are many rarer diseases and conditions that can lead to dementia, dementia-like symptoms or mild cognitive impairment. Rarer types of dementia include Creutzfeldt–Jakob disease, Huntington’s disease, and Posterior cortical atrophy. A person with a rarer type of dementia might have different symptoms, particularly during the early stages of the condition. Knowing the type of dementia is important as it may allow the person to get the right treatment, care, and support. It is very important for anyone who has regular problems with their memory or thinking to be assessed by a health professional. #RareDiseaseDay

“I want to go home.” It’s not uncommon for someone living with dementia to say that they want to go home, however it can be distressing, both for the person with dementia and their carers. It can be hard to know what to say, which is why we wanted to share a few things to keep in mind when this happens. It’s usually best not to try to reason or disagree with the person about where their home is, or to tell them that they’re already home. Instead, listen to them, and try to acknowledge and understand their feelings. For the person with dementia, it’s likely that the term ‘home’ describes more than the place they currently live. It may represent memories of a happier time when they felt comfortable and secure. It can be helpful to reassure them that they are safe and cared about where they are now. You can also ask them about their home – where is it, and what is it like? You may be able to use this approach to divert the conversation to a different topic – for example, by asking about any loved ones they mention. You can also try talking about a new subject like food or music, or an activity like going for a walk or looking through a photo album. By encouraging them to talk about why they were happy in their home, you might also be able to work out what they need to feel more comfortable. If they seem unhappy, try to figure out why. Anxiety can be caused by discomfort, so it can be helpful to run through a mental checklist - could they be hungry, thirsty, too warm or too cold? And finally, it can help to keep a log of when they ask this question. Certain times of the day might be worse than others, and if it happens later in the day it could be due to ‘sundowning’. If you see a pattern, you can take steps to lessen or avoid some of the triggers. For more support and advice, call the Dementia Support Line on 0333 150 3456.

It's tough to put into words just how much #Carers, up and down the country, are doing every single day to support their loved ones. It's why we're proud to work with organisations like Carents to better support those incredible carers who give so much of themselves to others. Huge thank you to Carents for helping us #MakeDementiaAPriority 💙