‘From stepping into the doctor’s room that very first day, the journey itself took about two years. Why?’ ‘Two years of being prodded and scanned, tested, interrogated, questioned.’ John was diagnosed with Primary Progressive Aphasia in 2017 – just days before his 60th birthday. This rare form of dementia mainly affects speech and language. Although getting a diagnosis was a long and frustrating process, it was also a relief as it removed the question mark that had been hanging over him. John shares the story of his diagnosis journey, the benefits of getting a diagnosis, and his hopes for others in the future.
Alzheimer's Society
Non-profit Organizations
At Alzheimer’s Society we give help and hope to everyone living with dementia.
About us
We want a world where dementia no longer devastates lives. That’s why we give help to everyone living with dementia today, and hope for the future.
- Website
-
http://www.alzheimers.org.uk
External link for Alzheimer's Society
- Industry
- Non-profit Organizations
- Company size
- 1,001-5,000 employees
- Headquarters
- London
- Type
- Nonprofit
- Founded
- 1979
- Specialties
- Care and Research Charity
Locations
-
Primary
43-44 Crutched Friars
London, EC3N 2AE, GB
Employees at Alzheimer's Society
-
Avnish Goyal CBE 💚
Hallmark Care Homes | Santhem Residences | Care England | Championing Social Care | Care Workers Charity | Alzheimer's Society | Goyal Foundation |…
-
Tony Beaston
Test Manager at the Alzheimer's Society.
-
Alastair Shanks
Helping your elderly parents to live well in the comfort of their own homes. OUTSTANDING rated home care and live in care. 5* Rated Employer
-
Katarzyna Hejczyk-Mika, PhD
Innovation and Technology | PhD in Chemistry
Updates
-
People living with dementia and their carers face numerous inequalities, with a recent report funded by Alzheimer’s Society identifying 110 different dimensions of healthcare inequalities. These inequalities relate to factors such as gender, socioeconomic status, age, and ethnicity. We know that these inequalities are experienced by people throughout their entire dementia journey, from diagnosis through to end of life. That is why we have launched the Healthcare Inequalities Initiative. This £2 million investment will fund an ambitious, large scale research study which will implement and evaluate an existing intervention, bringing it to people affected by dementia and starting to bridge the inequalities people face during dementia diagnosis and/or post diagnostic support. As Chair of our Healthcare Inequalities Advisory Board, Professor Popay will lead the expert review of all applications submitted to the Healthcare Inequalities Initiative funding call. Expressions of Interest for applications to the Healthcare Inequalities close on 23rd September 2024. To find out more about how to apply please visit: http://spkl.io/6042fBkAG.
-
‘Growing up next door to our grandparents made me and my brother feel like the luckiest grandchildren in the world. Our Dada's generosity was boundless, and it only grew when it came to us. ‘What I loved most was his passion. Whether it was for sports, clothes, Bollywood movies, food, or life itself. He never did anything halfway, and I’m sure I’ve inherited that trait from him.’ Roopa’s Dada, who lived to the age of 92, was quite fit and healthy. But on Christmas Day 2023 he had a fall at home, which was seemingly the start of his dementia journey. ‘He lost interest in the things he once loved. He wasn’t talking as much or engaging in any activities. He wasn’t paying attention to anything and seemed completely unlike himself. The GP suggested it might be a side effect of the medication he was given after the fall. 'As the months passed, things worsened. He began to lose his train of thought more frequently, started sleeping through the day, and gradually became a shell of his former self. 'I recognised the signs almost immediately, and a quick search led me to the Alzheimer’s Society website, which confirmed my suspicions. 'There is still a lot of stigma around accepting that a family member has dementia, making it even more challenging to begin the process of seeking a diagnosis. Coupled with the pressures on the NHS, this can leave you waiting for confirmation. 'It took two memory tests—one in the hospital and one at home— several GP appointments, most of which were over the phone, and nurse visits before his dementia was finally confirmed. 'This was incredibly frustrating because we knew him better than anyone, but he was unable to express his pain or discomfort, often responding with “I’m fine” when we knew he wasn’t. 'His official diagnosis came just a day before he was admitted to the hospital following a heart attack, which ultimately led to his passing.
-
Do you know the most common early signs and symptoms of dementia? In the early stages, dementia symptoms can be mild, not easy to spot, and difficult to tell apart from other conditions. This often means people don’t feel ‘bad enough’ yet to visit a GP. But if you notice any changes, then you deserve to know the reason. It might not be dementia. However, if it is, an early diagnosis is so important in helping people to access the right care, treatment, and support. So if you spot any of these six common dementia symptoms in yourself or a loved one, download our symptoms checklist and visit your GP.
-
Alzheimer’s Society lights up Piccadilly! Ahead of #WorldAlzheimersMonth in September, we were given the incredible opportunity to take over the iconic Piccadilly Lights. The display brings the lived experience of people affected by dementia to the heart of the city, ensuring the message reaches millions of people visiting this iconic location. By sharing quotes from real people affected by dementia, the activation highlights the devastating impact that dementia has behind closed doors – and how Alzheimer’s Society will be there for anyone who needs us, again, and again and again. If you're in the area and want to take a look, these ads will be live until the end of the day on Sunday 1 September, with our takeover of the full display running at 50 minutes past the hour, every hour!
-
We're here to bring help and hope to everyone affected by dementia. A big part of that is making sure dementia services are inclusive, and everyone has equal access to the support they need. And you can help make it happen! We're excited to be working with our friends at @ucl on creating culturally appropriate support for people from Black African, Black Caribbean or Black British communities. UCL would love to hear from anyone from these communities who would like to share their experience and be a part of making dementia support more equitable for all. Your voice matters, and sharing your experiences could make a big difference. If you would like to get involved, please drop the team a line at [email protected]. We're looking forward to hearing from you.
Building equitable, inclusive dementia services is essential to Alzheimer's Society providing help and hope to all those affected by dementia. Our essential partnership with UCL focuses on creating culturally appropriate support for people who are Black African, Black Caribbean or Black British. Moïse Roche at UCL is leading on this project and is asking for people from those communities to share their experiences. If this is you or people you know, please get in touch directly with Moise so your voice is part of building better services for those affected by dementia. Please share with your networks.
-
We can’t believe #Trek26 is over for another year! A huge thank you to all the incredible trekkers, volunteers, supporters and sponsors who took part. In total, 11,114 of you took on the challenge, raising an unbelievable £5 million (and still counting!) to bring help and hope to everyone living with dementia. A special thank you to Regatta Ltd who kindly provided the trekking t-shirts for everyone. We hope you enjoyed exploring some of the UK’s most breathtaking places – we can’t wait to do it all again next year 💙
-
‘I blamed myself for having this condition. The anger kicked in and I kept asking, “Why me?” When Dawn Davies was diagnosed with dementia at just 62, she thought her life was over. ‘I was in total shock, absolute total shock.’ It’s only two years since Dawn’s partner Brian talked to her about her memory problems. ‘When he asked me about something I’d forgotten, my answer was always, “I don’t know, I’ve slept since then.”’ Dawn and Brian went to the GP for her to have a memory test. She was then sent for a CT scan, and the results changed her life forever. ‘I was told there were changes in my brain. We went from the clinic to get a cup of coffee and I didn’t realise my hand was shaking, until she told me to put the cup down. ‘It was a massive, massive shock. I’d been to the clinic, was given a diagnosis and then I had been left to deal with it. ‘I sat on the sofa and went, “Don’t talk to me. Don’t look at me. Just leave me alone.”’ ‘I didn’t want to shower, I didn’t want to eat, I didn’t want to go anywhere, I didn’t want to deal with people.’ ‘I was a bit of a living nightmare to my family. I told Brian to leave me and find someone else. ‘I was angry at the world, and I felt like a burden. I had always been quite a bubbly person, chatty and friendly, and I sort of withdrew. Dawn had previously worked as a cleaner, and when she told her employers about her diagnosis, they immediately tried to get rid of her. She resigned. ‘The lack of support did it for me. I thought, if they can’t support me at the beginning, how are they going to support me when things progress? ‘Sometimes I hear people making stupid comments about Alzheimer’s, and I think, “Unless you’re actually living with it, you haven’t got a clue.” ‘I’ve had people cross the street to avoid me, and some so-called friends don’t contact me any more. ‘It’s OK. People don’t know how to deal with this sort of thing. They don’t know how to talk to you. There’s a stigma and that’s what we need to remove.’ Generally, though, life is on the up. ‘You can still have an active life, a very normal life. You just have a health condition that you’ve got to take extra care with.’
-
Research will beat dementia, however only one in five dementia PhD students go on to stay in dementia research. This means so much talent and expertise is being lost. That’s why we’re delighted to announce we’ll be investing £9million into funding three new Doctoral Training Centres designed to support and nurture dementia researchers at the start of their career. This investment aims to urgently attract and nurture a new, bold and ambitious generation of researchers so we can ramp up the speed and progress of life-changing breakthroughs so desperately needed for people living with this devastating condition. The centres will support nearly 90 students over five years to enter dementia research and will focus on building knowledge and understanding in areas that have been particularly underfunded. Katherine Gray, our Head of Research, explains everything you need to know about our investment into new Doctoral Training Centres.
-
‘It’s important that we continue to unite against dementia, and that we fundraise and raise awareness as much as we can.’ Michelle’s father’s vascular dementia progressed slowly in the beginning, but as time went by it soon worsened. ‘Everybody loved Dad and wanted to be around him. He was a true gentleman and an exceptional parent. When I was growing up, my friends would love coming to our family home and they always enjoyed a natter with Pops, laughing at his jokes and silly sense of humour.’ When his dementia progressed, Michelle noticed her family and friends started to disappear and distance themselves from her family. ‘When a person is diagnosed with dementia, it affects the whole family in different ways.’ Today, Michelle and her family attend our Memory Walks to remember her dad and to spend time with people who understand their journey. ‘Memory Walks are a good opportunity to come and be with people who know exactly what you’re going through. It also allows time to reminisce and remember those people that are perhaps no longer here that were impacted by the disease.’