The Dementia Trust

What an incredible achievement. Huge congratulations to all the team at Rare Dementia Support on their new home, and to all the funders who made the new centre possible 👏 A vital space for all those involved in supporting people living with rare dementias, families and carers. 🤗

Rare Disease Day 2025: What does it mean to be an ‘expert’? Typically, we think of expertise as something gained through years of study and/or professional experience. But this definition neglects expertise developed through lived experience. Taking rare dementia, for example, clinical and scientific expertise can only get you so far. To truly understand these conditions, insights into the lived experience of people affected are invaluable. In this post UCL research fellow, Dr. Chris Hardy shares more about the Disruption Award funded project and the amazing conversations featuring insightful and respectful questions from both sides. ↳ Tap the link in the comments to read the post. 👇 A huge thank you to Chris for sharing this update on the project, and all those at Rare Dementia Support for their continued research and support of people living with a rare dementia. ... #raredementias #rarediseaseday Rare Disease Day The National Brain Appeal University College London Hospitals NHS Foundation Trust ♻️ Help others learn more about rare dementias and support available by sharing this post.

Some dementias are exceptionally rare and only a small number are known to exist throughout the world. 🌏 According to Rare Dementia Support - "Between 5% and 15% of people living with a dementia receive a diagnosis of a rare, inherited or young onset dementia." These conditions are rarer, can occur at a younger age, and can cause symptoms that are not only memory-related. Being aware of rarer dementias can help us recognise unusual symptoms early. Enabling the possibility of better support and diagnoses. #RareDementias #RareDiseaseDay ♻️ Please help us share more about Rare Dementias Rare Disease Day

Friday 28th February is #RareDiseaseDay 2025. 📣 This global movement raises awareness of the 300 million people with rare diseases across the world. It also supports their families and carers. This Friday, we will be highlighting 'rare dementias' with an update from Rare Dementia Support on their work supported by the Dementia Trust. Many people will know 'dementia' is the term used to cover a group of diseases that cause decline in cognitive function. You may have also heard about some common subtypes, such as ⤵ ↳ Alzheimers disease ↳ Vascular dementia ↳ Mixed dementia ↳ Dementia with Lewy Bodies ↳ Frontotemporal dementia Together, these broad subtypes account for around 95% of all dementias. However, researchers think there are at least 200 subtypes of dementia, perhaps more. So this Friday, on Rare Disease Day 2025 look out for some unique insights and discussions on rare dementias 🧠 🎬 Rare Disease Day ✅ If you'd like to keep up to date with our work at the Dementia trust, tap to follow us 👆

📣 A must-explore programme + resource Canadian based 🇨🇦 Artful Moments was inspired by a simple act of looking at and discussing art with people living with dementia. The online programme is designed to inspire and empower those working with people living with dementia. ⤵ Dementia Trust adviser Sonia Mangan offers a compelling review of this research-based approach, that emphasises the art of the possible and encourages creative engagement. Read the post 👉 https://buff.ly/4i9jqxS 📷 Art Gallery of Hamilton ♻️Please share with others if you found this useful Ontario Arts Council | Conseil des arts de l'Ontario Canada Council for the Arts | Conseil des arts du Canada #Arts #Dementia #Creativity

What things can make a great care home for a person living with dementia? 🏘️ Everyone wants to stay at home for as long as possible, but here are five signs of a great care home, just in case ⤵ 👩⚕️ A great care home: has dementia educated and qualified care workers and nurses (also great cooks and managers) 🔆 A great care home: is designed for maximum light and has a great outdoor space or garden. (Including some chickens or maybe a dog) 🚋 A great care home: is near where people live, with transport links, so visitors find it easy to call in for tea. (And lots of cake) 💺 A great care home: makes it easy for you to have a private quiet space or a busy social space when YOU choose. 📚 A great care home: has things that you like to do, if you want, and lets you choose when you want. What other things would you include as signs of a great care home for a person living with dementia? .. If you found these tips useful, please share with others ♻️ #DementiaAwareness #CareHomes #DementiaDesign

🎬 Project Rewind: Looking back at impactful and empowering Disruption Awards 🚀 This project called 💃 "Daylight Dancehall" was funded by the Trust from a proposal by the late Chris Ledger from the University of Atypical for Arts and Disability, a disabled-led arts charity based in #Belfast, taking an empowerment based approach towards supporting disabled and D/deaf people’s involvement in the arts. 🤔 This project challenged the stereotypes of people living with dementia. "This [project] was about empowering people living with dementia who came to our sessions. The stereotypes of people with dementia are that it's a miserable existence and the worst thing that could possibly happen to you"—Chris Ledger. Chris had taken part in previous Trust funded events, including a residential weekend at the end of The Atlantic Philanthropies project in Northern Ireland, where she influenced our thinking in the debate about finding new ways forward. .. Trustees were very sad to hear Chris died of cancer just after her 60th birthday in 2020. She was an inspirational advocate for disabled and deaf artists and had a profound influence on our work in the field of dementia. She was a lovely woman, and a delight to work with 💜 #Dementia #Innovation #Inspiration #Arts #Health

🚨 Unpaid carers are at breaking point and need our support. 🚨 New research from Carers UK in the 'State of Caring 2025 Survey' reveals an increasing number of people looking after a disabled, older or ill relative are experiencing poor mental health because they cannot take a break from caring. According to the survey ⤵ 💔 More than 1 in 3 carers report having bad or very bad mental health, and this situation is getting worse. 💼 40% have had to leave work because they are not able to get the support they need. 😞 65% feel overwhelmed, with many unable to take even the shortest break from caring. Social care should be a lifeline, but we know it's not currently working for carers. — 77% haven’t had a 'Carer’s Assessment' to see what help they require in the last 12 months. — Long wait times, a lack of services, and poor-quality care are leaving families to struggle alone. This leads to carers feeling invisible, undervalued, and exhausted. What needs to change? ⤵ ✅ Access to respite care – no one should be pushed to breaking point. ✅ Better recognition – unpaid carers are holding up our health and social care system. ✅ More support in the workplace – flexible working and financial help are vital. 💬 Let’s demand better and make caring visible. If you’re an unpaid carer, know that you are not alone. And if you agree more needs to be done, please share this post. ♻️ #CaringForCarers #UnpaidCarers #SocialCare #Dementia #Support

Why might an early dementia diagnosis be helpful? 🧐⤵ GP Dr. Vicky Fakhoury knows it can be hard to persuade someone to ask their doctor if they might have dementia. However, in doing so provides the person and their loved one's important options. This can make a big difference to ⤵ 1️⃣ Access to treatment (currently, medication often work best in the early stages) 2️⃣ Greater ability to plan for the future 3️⃣ Access to support services and resources 4️⃣ Better understanding and management of symptoms It's also important to know if the symptoms you are experiencing are NOT dementia related, as there are other conditions that can sometimes look similar. If you are worried it is important to seek advice and support from your GP. Follow the link below to our short clip on 'getting a diagnosis' 👇 🔗 https://buff.ly/3yjNe9x #DementiaDiagnosis #AskYourDoctor #DementiaAwareness #EarlyDiagnosis #AlzheimersAwareness

What does it mean when someone living with dementia hears voices? 🤔 In this short clip 🎬 Professor June Andrews OBE FRCN LLB talks to David Storm, Associate Director for NHS CNTW Trust and recipient of a 2023 Disruption Award about the 'Voices of My Past' project. It sees staff at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW) putting research into practice, offering a different way of both understanding and supporting people living with dementia who hear voices. 👉This project challenges us to think differently. #MentalHeathAwareness #Disruption #DementiaAwareness #NHS #HealthCare #HearingVoicesProject ♻️Please share with others who might want to stay updated on the project NHS Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust