'She smiled at me just before she passed. It was as if the dementia disappeared momentarily right at the end.' Jasnaam sadly lost her mum, Elaine, in April this year after she was diagnosed with dementia. After noticing changes in her mood, Elaine and her family visited her GP and was told it was likely depression. Elaine was a mother of six and an unofficial counsellor to her family, friends and neighbours. She loved to feed her loved ones, laugh at pranks and was a keen cyclist. Jasnaam was convinced it wasn’t just depression but another visit to the GP prompted a brain scan which came back clear. 'Then Covid hit, and because Mum had COPD we tried to keep her safe, which had the effect of making her even more isolated. By the time we were seen again, in 2021, we were told that her brain scan actually showed calcifications. She started medication but from that point on she deteriorated very quickly. 'Dementia is just...I can’t even describe it, what it does to a family…you lose them again and again.' Jasnaam says the loss of her mum is immense and wishes she knew more about the support offered to families going through their dementia journey. She will be taking part in the Birmingham Memory Walk with her friends and sisters in September.
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
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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
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Primary
43-44 Crutched Friars
London, EC3N 2AE, GB
Employees at Alzheimer's Society
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Avnish Goyal CBE 💚
Hallmark Care Homes | Santhem Residences | Care England | Championing Social Care | Care Workers Charity | Alzheimer's Society | Goyal Foundation |…
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Tony Beaston
Test Manager at the Alzheimer's Society.
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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
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Katarzyna Hejczyk-Mika, PhD
Innovation and Technology | PhD in Chemistry
Updates
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We're proud to have played our part, along with so many others from the #Health and #SocialCare sector, in helping Skills for Care to develop a new Workforce Strategy for Adult Social Care. The strategy aims to improve the quality of roles in adult social care, ensuring that the sector can attract and keep enough people with the right skills and values to provide the best possible care and support. A key highlight for us is the recommendation that all social care staff should have dementia training aligned to the Dementia Training Standards Framework. This marks a notable step forward for dementia care in England. So, our joint message to the new government and local decision makers is clear. Make dementia the priority it needs and deserves to be, implement this workforce strategy, introduce mandatory dementia training for the care workforce and make a huge difference in the lives of people living with dementia.
For the first time ever the adult social care sector has come together to develop the Workforce Strategy that it needs. We need the Strategy to ensure we have enough of the right people with the right skills to provide the best possible care and support for the people who draw on it. https://lnkd.in/eYmUPuJ8
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“I walk in memory of my greatly missed Nana, Iris, who we lost to dementia in 2015.” BAFTA award-winning actor and Alzheimer's Society Ambassador, Vicky McClure MBE, is participating in her 13th Memory Walk this autumn! “I always look forward to Memory Walk as the atmosphere is like nothing else. There is so much love in the air and you can’t help but feel lifted up by it. Caring for someone with dementia is really, really hard and yet, on the day, families and carers are able to feel surrounded by others who understand and totally ‘get it’. “But it’s also about raising awareness and stamping out any stigma around this disease, which affects a million people in the UK. And of course, you’ll have a great day! You’ll laugh and you’ll cry a little and you’ll feel totally validated and included – it’s just brilliant!”
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When caring for a loved one with dementia, it can be challenging to find the time or energy to take care of yourself. However, it’s really important that you do. Glenys has been caring for her husband Ralph since his Alzheimer’s disease diagnosis in 2019. She has advice for other carers, including on how they can look after their wellbeing. What advice would you give to other carers?
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Ralph was diagnosed with Alzheimer’s disease in 2019 and managed to remain independent for a couple of years. However, he gradually began to struggle with everyday tasks and needed more support as things became worse. Alzheimer’s can affect a person’s behaviour and personality as well as their memory. Ralph’s wife, Glenys, shares the impact of these challenging symptoms. ‘At times, he became verbally aggressive towards me through sheer frustration. It is very upsetting when your partner of 50 years says hurtful things to you. I felt physically scared of him on a couple of occasions.' Ralph also experiences ‘sundowning’, where a person with dementia becomes distressed or agitated, especially later in the afternoon or evening. ‘It was so strange that Ralph enjoyed our lovely home and sunny conservatory during the mornings and then suddenly, with a flick of a switch, said he wanted to go “home”.’ ‘He’d say, “Let’s get in the car and go.” I’d ask him where and he’d say, “Home – back to Poole,” or Portsmouth or sometimes Bournemouth.’. Carers and professionals told Glenys to ‘go along’ with Ralph whenever he was sundowning. She struggled with this, as it felt like lying. ‘At first I thought this was wrong, but I now realise it’s the kindest thing to do,’ she says. ‘You have to tell yourself it’s not about you, it’s about them.’ Trying to find the right care for Ralph has been a long journey for Glenys. Ralph has limited mobility after damaging his knees and ankles when he was in the Marines, and he needs a lot of daily support. She employed a live-in carer, hoping this would provide care for Ralph at home and give her the support she needed. ‘Even though the carer was so compassionate and patient, Ralph got upset very easily and pushed her away.’ ‘What Ralph really wants is to live in our home with only me looking after him,’ she says. ‘It just wasn’t fair on me or our lovely carer. I had to find the best possible care home and let him go. ‘It’s hard to let go of someone you love. Someone who’s given you support, who loves you and has been there for you for over 50 years.'
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The Sewing Bees socialise, sew, and raise money for Alzheimer’s Society as Julie, a member of Sewing Bees, has personal experience of dementia through her mum. The volunteer fundraising group came together and produced a quilt with each square made by a different member. ‘Alzheimer’s does not hold back. Julie’s Mum would wander off and get lost, hide things, and imagine people were in her flat. At one stage we had to pay for night carers to sit outside her door to prevent her wandering out during the night. She lost her mobility, after a fall in 2015 when she broke her hip, lack of meaningful physiotherapy following the operation, resulted in her never walking again. From then on, she continued to decline, the disease had won. Her communication, relying on a few standard replies, began to disappear until Mum was unable to communicate and she was no longer able to recognise us, although just occasionally, we might get a smile. A sad end for such a lovely lady, a wonderful Mum and devoted Grandma.' The quilt has been exhibited at the NEC Birmingham through the Festival of Quilts. They have also recently entered their Alzheimer’s Quilt into the Group Fundraising category at the Malvern Quilt show and were placed 3rd! If that wasn’t enough they have smashed their £500 target and are currently on £2117! They love a bucket collection and take their quilt along on a homemade stand which generates lots of great conversations.
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We’d like to congratulate our storyteller, Bill Wilson, on his nomination for the Unsung Hero award in the 2024 Third Sector Awards. Bill and his wife Jo, from Newcastle, had been together for 50 years when she was diagnosed with Frontotemporal Dementia with Alzheimer’s disease in June 2020 at the age of 66. Jo sadly died in early 2023. Like all carers, Bill is an unsung hero, but he especially deserves recognition for his tireless commitment to helping others affected by dementia. Not only has Bill shared the pain of losing someone slowly to dementia, but he has helped raise the topic of dementia when so many want to ignore it. He’s campaigned, raised funds, spoken at events, and lobbied local government since Jo’s death – all in Jo's name. ‘Things aren't going to change in my lifetime but if we don't start that change it's never going to happen,’ says Bill. ‘We need to start pushing for change now in the hope our children and their children get all the support they need.' We’re rooting for Bill to win the Unsung Hero award to show dementia it cannot win when there’s people like Bill, who have been through so much, and are still prepared to fight it. Whatever the outcome of his nomination, we can’t thank Bill enough for his dedication, and we hope he receives the recognition he deserves for continuing to fight and campaign for people affected by dementia.
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‘Earlier this year, scammers cleaned out my current account. They tried to clean out my savings account too. ‘I had a phone call from a gentleman who claimed to be from the Barclays Bank fraud department. He told me he was investigating fraud by members of the fraud team. ‘He said he needed my help to catch them, so immediately I wanted to help. But my suspicions were aroused. I said to him, ‘How do I know you are who you say you are?’ He told me he knew that I’d received a new bank card a few days before. ‘I decided to hang up and ring the number on the back of my card, using my landline this time. I was transferred to the same person, and I honestly believed I was talking to the real McCoy. ‘He asked me to transfer £2,500. I said I didn’t have that much, but I did have about £1,800. He told me that if Barclays’ fraud team rang me, I should tell them it was for my aunt. So that’s what I did. ‘I thought I was helping somebody catch a thief, but I was helping the thief. They shouldn’t have asked me to transfer money. But I wasn’t thinking. I was only thinking, ‘How can I help?’. They got me through my altruism. 'After about an hour, it occurred to me that there was something fishy. I felt vulnerable again, especially with my dementia. 'Things were going well, and I was doing things independently. Then suddenly I had to tell my wife I had cleared out the bank account. It was an awful feeling.'
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Prior to the general election, then-Shadow Minister for Care, Andrew Gwynne MP, committed a Labour Government to increasing the national dementia diagnosis rate target. Alzheimer’s Society looks forward to working with the UK Government to deliver on this pledge. Alex, from our Policy team, discusses why diagnosis rates need to improve, and why this must be top of the new government's agenda.