Alzheimer’s Disease International (ADI) has commissioned the London School of Economics and Political Science (LSE) to help conduct the world’s largest survey on people’s attitudes to Dementia. The results will form the basis of their World Alzheimer Report2019.
ADI need more men to take part, by 10 May 2019 only 18% of completed surveys were by men.
The survey is now available in 25 languages with more to be added.
The survey will only take around 10 minutes to complete and will be available in multiple languages. Please note that we will be adding more languages over the next two weeks. It will be predominantly multiple choice, accessible – available both online and offline – and is fully anonymous.
Please encourage the men out there to take part as the last I heard only 20% of respondents were men.
The survey will only take 10 minutes of your time but completing it will benefit people living with dementia and the families all over the world.
This is the most important dementia-related survey that you will do this year.
If you know any groups or organisations who will promote the survey please email j.mcgowan@alz.co.uk for a toolkit, including social media assets and draft messages.
It’s time to dust off your bowls and whip out your whisks – Cupcake Day is back! Whether you bake it or fake it, sign up today and we’ll send you out a free fundraising kit.
Sign upand receive your free fundraising kit in the post.
Simply decide when and where to host your Cupcake Day. Cupcake Day is 13 June 2019, but you can host yours on any day that suits you!
Start baking and/or buying delicious treats for your day (yes, faking is definitely allowed!) and raise as much dough as possible to help beat dementia.
What’s in your fundraising kit?
Posters to help you spread the word
Fundraising ideas and fun games to play on the day
A donation box and Gift Aid form (for the all-important ‘dough’)
Cake toppers and decorations
A selfie-frame to share your creations on social media
In the average time it takes to bake a batch of cakes, six people in the UK will develop dementia. It is now the leading cause of death in England and Wales, overtaking both cancer and heart disease.
Your Cupcake Day can help to fund pioneering research, crucial support services and vital care. By hosting your day, you are uniting with us in the fight against the UK’s biggest killer.
Until the day we find a cure, because of Cupcakers like you, Alzheimer’s Society can continue to be here for anyone affected by dementia – wherever they are, whatever they’re going through.
Cupcake Day has raised £2.7 million since 2016 – let’s make this year our biggest yet!
Frontotemporal dementia (FTD) covers a wide range of different conditions. It is sometimes called Pick’s disease or frontal lobe dementia. This page explains what FTD is, its symptoms, and who gets it. It also describes how it is diagnosed and the treatment and support that is available.
The word ‘frontotemporal’ refers to the lobes of the brain that are damaged in this type of dementia. The frontal lobes of the brain, found behind the forehead, deal with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech.
The temporal lobes – on either side of the brain – have several roles. The left temporal lobe usually deals with the meaning of words and the names of objects. The right temporal lobe is usually involved in recognising faces and familiar objects.
Frontotemporal dementia occurs when nerve cells in the frontal and/or temporal lobes of the brain die, and the pathways that connect the lobes change. Some of the chemical messengers that transmit signals between nerve cells are also lost. Over time, as more and more nerve cells die, the brain tissue in the frontal and temporal lobes shrinks.
When the frontal and/or temporal lobes are damaged in this way, this causes the symptoms of FTD. These include changes in personality and behaviour, and difficulties with language. These symptoms are different from the memory loss often associated with more common types of dementia, such as Alzheimer’s disease. As FTD is a less common form of dementia, many people (including some health professionals) may not have heard of it.
Frontotemporal dementia and younger people
Frontotemporal dementia is a significant cause of dementia in younger people – that is, those under the age of 65. Frontotemporal dementia is probably the third most common cause of dementia in this age group and some studies even place it second most common. It affects men and women roughly equally.
Frontotemporal dementia is most often diagnosed between the ages of 45 and 65. However, it can also affect people younger or older than this, and it is probably under-recognised in older people. Even so, this ‘peak age’ for FTD (the age at which it is most often diagnosed) is much younger than the age at which people are most often diagnosed with the more common types of dementia, such as Alzheimer’s disease.
Being diagnosed at a younger age is likely to present someone with a different set of challenges. They may still be working, have financial commitments or dependent children, and want different services and support.
The 3 Nations Dementia Working Group will have a stand at the Alzheimer’s Society Conference at the Kensington Oval, London on 21 and 22 May 2019.
Come and talk to us about Dementia and what we do, you may also wish to join as a Full or Associate Member, membership is free.
About the 3 Nations Dementia Working Group
The 3NDWG is a working group of people living with dementia across England, Northern Ireland and Wales. Members are based all across the three nations, creating a network of voices on dementia who can lead on regional projects.
A steering group of 12 people with dementia drawn from the membership will lead the 3NDWG.
We wish to contribute to:
Improving the lives of those living with dementia
Improving the lives of those who support and care for people with dementia
Help the work of professionals and policy makers working in this and related areas
To make a positive difference to the lives of people affected by dementia.
To become an advisory and the ‘go to’ group for professionals, the media, policy makers and anyone seeking input from people with dementia.
To reduce the prejudice and stigma attached to dementia.
To raise public awareness about the needs of people with dementia and their supporters and carers.
To be a collective voice of and for people with dementia nationally, regionally and locally.
To influence public policies that impact on the lives of people with dementia and their families.
To initiate and deliver specified projects for the benefit of people with dementia.
To advocate for all professionals working in the field to involve people with dementia in their work
We have been involved in activities such as:
Being approached for input on several consultation exercises such as the Green Paper on Health and Social Care and the Prime Minister’s Challenge on Dementia 2020
Asked to speak at several events, including the All-Party Parliamentary Group on Dementia, Dementia Friendly Communities and others
Delivering the opening session at the Alzheimer’s Society Annual Conference
Attending the Labour Party Conference to reach key MPs and other influencers
Heavily involved in the production of the new rights-based Dementia Statements and the Wales Dementia Action Plan 2018-2022
Providing a service user perspective to interview panels for key staff appointments within the Alzheimer’s Society
Building links to key organisations such as the DAA, NHS England, the Welsh Assembly, the Alzheimer’s Society
Delivering a presentation on the rights of people affected by dementia at Alzheimer’s Disease International conference in Chicago 2018
Attending the NHS Long Term Plan event, where we directly addressed the Secretary of State for Health and Social Care regarding dementia care
Sat on the judging panel for the Dementia Friendly Awards
Full Membership
Living With Dementia
We work to improve awareness of, and support for, people affected by dementia.Our members are people living with dementia at any stage of their journey.
Join us if you want to be part of our social movement and bring about change.
The services and support available to people living with dementia varies hugely across our three countries, and between counties and districts. The Three Nations Dementia Working Group is working to change this so that everyone gets good, timely and individual support and care.
People living with dementia have a right to live as well as they can, as they choose. We campaign and influence to make this happen.
Provide opportunities for members to discuss their concerns, ask questions, and share experiences.
Bring together examples of what works and what probably does not work.
Provide as much as information as we can about how health and social care are structured across the three nations.
Be able to advise individuals about organisations that, like ours, exist to campaign for change.
Host discussions of rights and the law.
Host a Twitter chat for anyone anywhere in the world to join.
Send a newsletter every two months to provide updates about our activities and campaigns.
Be holding webinars on specific subjects from time to time, which will be advertised on our website.
Get our members to every possible opportunity to make their voices heard, whether in one to one or larger meetings, or at conferences and other events.
Care givers, paid and unpaid, are an immense and critically important resource, but are almost without exception undervalued.
While membership of 3 Nations Dementia Working Group is for people living with a diagnosis of dementia, we are campaigning and working to improve the support and training provided to all care givers.
Unpaid care givers need regular opportunities to recharge their own batteries, and to look after their own health and wellbeing.
All care givers should be provided with good quality training to enable them to feel confident in their knowledge of the disease and its effects.
We urge all care givers therefore to encourage people living with dementia to join the 3 Nations Dementia Working Group in order to add to the weight of influence we can bring to bear for change.
Visit the 3 Nations Dementia Working Group website here
The 3 Nations Dementia Working Group, Steering Group are a friendly group of people diagnosed with dementia who want to make a difference whilst we still can.
Who are we?
We are a small group with big ambitions and we hope to do the following:
Bring the lived experience as experts with our personal knowledge of dementia that people value whether in a professional or non-professional capacity. As such our aim is to become the ‘go to’ group within the three nations (of England, Northern Ireland and Wales) for anyone seeking input from people with dementia.
Continue to contribute to society, to give value, advice and information where required and requested.
Help each other through mutual support, friendship and understanding.
Help all those affected by dementia. We understand what you are dealing with.
Help those who are trying to help us (such as policy makers, service providers, academics, researchers, businesses).
Join the 3 Nations Dementia Working Group
If you too have a diagnosis of dementia, and live in England, Northern Ireland or Wales, why not join us?
You choose how active you would like to be. It may be you just want to hear what is going on or you may want to contribute to project work. You may be surprised at the difference you can make.
Alzheimer’s Society’s vision is a world without dementia. Until the day we find a cure, we will create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.
Globally every three seconds someone develops dementia and internationally it is recognised as a severe health crisis. We know that more research is being conducted than ever before, more collaboration on policy, and more support, awareness and community action – change is happening, but is it enough?
Our Annual conference will shine a light on the scale of the problem, but will focus on how our actions, our collaborations, policies, and the research we undertake as individuals, builds through partnerships to organisation, community and national change for people with dementia, their carers and families.
Building on our call to take action
Alzheimer’s Society Annual Conference 2019, takes place over two days at the start of Dementia Action Week (20-26 May) at the Kia Oval, London. We have worked with people affected by dementia, putting their voices and experience at the forefront of our work, to pull together a jam-packed programme.
For many a diagnosis of dementia can feel like the end of their life, leading to feelings of social isolation and loneliness. We live in a society with a support system that has not yet responded to the scale of the challenge dementia presents, meaning people with dementia also face greater inequity and lack of access to the appropriate and affordable care and support they need and deserve.
Research can help us understand more about the diseases that cause dementia and provide evidence for how best to support people affected, but without health and social care systems fit to use this research and meet the needs of people with dementia, we will not make the progress urgently needed in the UK and beyond.
Together we are changing the landscape of dementia forever, and our conference unites those personally and professionally affected by dementia to focus on the latest progress we are making and the challenges for the future.
Key themes
• Supporting People affected by dementia and their carers
• Building a movement for change
• Research to transform care and discover new treatments
Key speakers:
Caroline Dinenage MP, Minister of State for Health and Social Care
Professor Steve Powis, National Medical Director NHS England
Professor Dave Sharp, UK DRI Care and Technology Associate Director, Imperial College
Suzanne Cahill, Author and Professor of Social Work and Social Policy, Trinity College Dublin
John O’Brien, Professor of Old Age Psychiatry, University of Cambridge
Julie Ogley, Incoming President of Association of Directors of Adult Social Services
