Dementia Change Action Network #DCan

We're excited to step into this new strategic phase, grounded in the real-life experiences of people living with dementia and family and friend carers. It’s about listening, learning, and working together to ensure people with dementia are truly valued and supported to live life their way.

Thank you to Liz Leach Neil Crowther Elle Walmsley Dementia UK Care Quality Commission Think Local Act Personal (TLAP) Caroline Waugh Rachael Litherland Mohammed Akhlak Rauf MBE PhD and others for an interesting and energising Dementia Change Action Network #DCan session this pm. 50+ interviews completed to date exploring what matters most to people with dementia. Turns out it’s much the same as what matters to all of us. Every response personal and specific to the people taking part, yet every response reflective of what it is to feel seen, be valued, and to contribute to the lives and wellbeing of others. #GloriouslyOrdinaryLives you might say.

Do you work at a memory clinic? If so, we need your help to update our memory clinic information. We’re currently updating the information on nextsteps.org.uk. This site provides crucial information about the memory assessment process and is viewed by around 1,500 people each month. To ensure the content remains accurate and up to date, we’re looking for people who work at memory clinics to review it. If you are interested in helping us, please send an email to Keara O’Connor at keara.oconnor@tlap.org.uk who will be in touch with you. Thank you for your support!

💙Dementia Action Week 2024 starts today!💙 A dementia diagnosis is vital. Vital to give people access to the care, treatment and support they desperately need. Yet, incredibly, ONE IN THREE people with dementia, DO NOT have a diagnosis. If you're worried about yourself, or someone close to you, then know what to look out for using Alzheimer's Society symptoms checklist at https://lnkd.in/dZDUSidB

An invaluable resource . Please #share #dementia #GP #dementiadiagnosis

Having listened and reflected, here are some further thoughts on the significance of *that* Alzheimer's Society advert and the strategic intentions & justifications behind it: https://lnkd.in/eKh2MNsg

There are always multiple truths. As leaders and as organisations or as movements, we have choices. We can choose to listen & reconcile multiple truths, with care, compassion, achieving impact whilst minimising harm or trauma. We can draw on all perspectives, insights, ideas and talents to find a constructive way forward. To come behind one version of the truth, inevitably denies or diminishes others. Doing so requires great care, especially for national organisations, or it risks creating division, limiting scope of policy, research, support & charitable purpose in the process. The impact of the recent Alzheimer's Society ad presents an opportunity for reflection, for listening, undertanding and reconciliation of multiple, sometimes conflicting views of a shared reality, and the emergence of a new framing of dementia. Getting there will start with conversation. When people, experiences and ideas come together, #DementiaCan.

If you have questions about what is widely referred to as “anticipatory grief” there are numerous sources of information and advice available to you. It refers to the feelings of loss and grief family, friends and people living with a range of terminal illnesses will sometimes feel, before someone dies. It’s important anyone caring for someone with any terminal illness, including dementia, is able to talk about their feelings, be heard and find support they need for themselves. To learn more, understand more about how you might be feeling and to know that others will be feeling the same, here are some helpful links to look at: Marie Curie UK https://lnkd.in/eaCVrmSC https://lnkd.in/ef-XEJiR Cruse Bereavement Support https://lnkd.in/gzdrPak4 Sue Ryder https://lnkd.in/eFZ5bY_K Dementia UK https://lnkd.in/er4ygGws Alzheimer's Society https://lnkd.in/ewjRe3nT Please share with anyone you think may benefit. When we come together #DementiaCan

We understand that being referred for a memory assessment can be an uncertain time because that’s what people have told us. People and families say they needed advice and guidance from the point of GP referral about what to expect, and where they can turn to for more help if needed. Next Steps is your guide to help you through every step of the process. Filled with information, links and practical “paper” tools to help you turn waiting times into preparation time. https://lnkd.in/d6b-5Wbh Step 1: What to expect from the memory assessment process Step 2: Take care of your own well-being Step 3 : Explore Available Support Step 4: What if I am diagnosed with a form of dementia? Visit the website or download the guide for free. From Dementia Change Action Network #DCan Co-Produced with people, families, providers, charities, NHS England and Memory Assessment Services #DementiaCan

We understand that being referred for a memory assessment can be an uncertain time because that’s what people have told us. People and families say they needed advice and guidance from the point of GP referral about what to expect, and where they can turn to for more help if needed. Next Steps is your guide to help you through every step of the process. Filled with information, links and practical “paper” tools to help you turn waiting times into preparation time. https://lnkd.in/d6b-5Wbh Step 1: What to expect from the memory assessment process Step 2: Take care of your own well-being Step 3 : Explore Available Support Step 4: What if I am diagnosed with a form of dementia? Visit the website or download the guide for free. From Dementia Change Action Network #DCan Co-Produced with people, families, providers, charities, NHS England and Memory Assessment Services #DementiaCan