Five things you should know about dementia
The 3 Nations Dementia Working Group
Featured
What is frontotemporal dementia?
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.
Our Campaigns
So we will…
- 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.
You can join us here.
Associate Membership
Caring For Someone with Dementia
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.
Become a Member
Professional
We are the go-to group for professionals working in the field of dementia. We are a membership organisation of people living with dementia.
We can find speakers for training, events, and conferences, and people who are keen to help co-design and evaluate services.
We can provide:
- guidance on how to involve people living with dementia in designing and evaluating services
- experience based advice on influencing system leaders and government
- expert knowledge of models of support and care from around the UK and abroad
- real stories of people living with dementia
- critques of your documents
- And much more
Contact Us
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.
You can join us here.
Tomorrow is the start of Dementia Action Week 2019.
It used to be called Awareness Week but awareness is fine, take Dementia Friends which is an awareness session NOT training but what is needed now is action to bring the treatment of Dementia in line with other chronic terminal diseases.
It is no longer acceptable for a GP not to refer a patient with Dementia for treatment because it is “not appropriate” or “they don’t understand“.
I have met many professionals who are going out of their way to develop the skills necessary to communicate with people living with Dementia in their clinics because they recognise the benefit to the person, their family and the healthcare system.
The Alzheimers Society Conference is on Tuesday and Wednesday this week at the Oval in London, drop by the 3 Nations Dementia Working Group stand if you are there.
I started another research study on Friday but at the time of writing this article, I cannot remember anything about it, apart from that the researcher was supportive, maybe some of it will return in the future.
Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.
ADI wants to hear what YOU think about Dementia!
Nominations for the National Diversity Awards 2019
You can nominate here
Other Nominations
You can nominate here
Petitions
See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)
Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage
Petition – No more PIP Assessments for People with Life Long Disability or Conditions
Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP
Consultations
Consultation – Learning disability and autism training for health and care staff
Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers
Survey
Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub
Tell us your experience of living with Dementia
Sheffield CCG – Urgent Care Review 2019
Videos
Newsletters
LEAD Coalition News – April 24 2019
Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2
Blog
“My last post was a ranty one – hands up, it’s a fair cop. I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief).“
Mum Has Dementia’s blog titled Apologies – many Care Homes are clearly a FORCE FOR GOOD
New Resources
Young Dementia UK – A decision-making guide for GPs
Dementia words matter: A DEEP guideline on language about dementia
Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.
Dementia Diaries Website
Who are we working with?
We are all part of the Dementia Engagement and Empowerment Project (DEEP). The Dementia Diaries initiative was designed by the non-profit communications agency On Our Radar (www.onourradar.org). It was launched by On Our Radar in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016.
Phase 2 of the project is funded jointly by Comic Relief and BIG Lottery Fund.
A team from Leeds Beckett University was asked to evaluate the success of Dementia Diaries. A dementia-friendly summary of their findings is available here (pdf, opens in a new tab) or you can download the full report here (pdf, opens in a new tab).
The website provides the audio recording and a written transcript of each diary, you can volunteer to transcribe the audio diaries here
This weeks Diaries include:
JACQUI CAN’T RECOMMEND ‘I FEEL BETTER WHEN I PAINT’ ENOUGH.
CAROL CONGRATULATES RAE ON HER APPEARANCE ON TV
PAUL REPORTS FROM THE NORTHERN IRELAND DEEP GATHERING
STEPHEN IS HAPPY IF A BIT SORE AFTER HIS FIRST SESSION OF COPD REHAB.
JACQUI REPORTS ON A VISIT TO THE ARC CENTRE
THE HAPPY TANDEMER REPORTS ON A JAUNT TO WHITBY
MELVYN HAS A SUGGESTION FOR INNOVATIONS IN DEMENTIA
WENDY READS A POEM WRITTEN FOR DEMENTIA DIARIES
Note for Professionals
You can use these Diaries as part of your Dementia Training.
As a courtesy, please email Rachel Niblock at Niblock@myid.org.uk to let her know that you will be using some of the Diaries, it helps when applying for funding in the future.
The Dementia Priority – Local and global action
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
And many more …
What do conference delegates gain access to?
- A jam packed two-day conference programme
- People with dementia and carers sharing their experiences.
- Over 10 main conference sessions, each focused on a different aspect of dementia care, research and policy.
- 16 parallel sessions covering the latest research updates and service improvements.
- Over 80 expert speakers from across research, policy, care, government and community groups
- Exhibition stands to show innovative products and services.
- Our interactive conference App.
- Over 100 posters showcasing pioneering work in the dementia field.
- Panel discussions and audience Q and As.
- CPD accreditation.
- Networking opportunities – via our drinks reception and App networking too
Who should attend?
This is a must attend event for anyone working in health and social care, local and national government, policy and research including;
- International and national dementia researchers/organisations
- Alzheimer’s Society funded researchers
- Central and local government
- NHS and third sector organisations
- Clinicians
- Commissioners
- Leading influencers in health and social care
- Providers of community health services
- Local authorities
- Research Strategy Council & Grant Advisory Board members
- Members of our Dementia Friendly Communities Programme
- Representatives of Dementia Friendly businesses
- Prime Minsters task and finish group
- People affected by dementia
- Research network volunteers
- Dementia Champions
Programme – Day 1 – 21 May 2019
| Time | Title | Speaker | |||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 9am | Registration, exhibition, posters and refreshments | ||||||||||||||
| 9.30am | Welcome and housekeeping | Richard Madeley, TV Presenter and Journalist | |||||||||||||
| 9.45am | Stepping up national action on dementia | Jeremy Hughes CBE, CEO, Alzheimer’s Society | |||||||||||||
| 10.00am | United by experience, united against injustice, united in action | Lesley Calvert, Dementia Voice Volunteer | Tutiette Thomas, Dementia Voice Volunteer | Angela Sandiford, Dementia Voice Volunteer | |||||||||||
| 10.30am | Dementia and human rights | Suzanne Cahill, Author and Professor of Social Work & Social Policy, Trinity College Dublin | |||||||||||||
| 11.00am | Refreshments, exhibition, posters and networking | ||||||||||||||
| 11.30am | Care Research & technology at the UK DRI: Improving lives today and tomorrow | Professor Dave Sharp, UK DRI Associate Director, Care Research and technology at Imperial College London | |||||||||||||
| 12.00pm | Parallel Sessions: |
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| 1.00pm | Lunch – Exhibition, posters, refreshments and networking | ||||||||||||||
| 1.45pm | Lunchtime drop-in sessions: |
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| 2.30pm | Parallel Sessions: |
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| 3.40pm | Exhibition, posters and refreshments | ||||||||||||||
| 4.00pm | Joining up health, social care and public health – developing solutions for an older population living with dementia | Sandy Sweet, Volunteer Ambassador, Alzheimer’s Society | Julie Ogley, President of ADASS | Caroline Dinenage MP, Minister of State for Health
and Social Care Professor Steve Powis, National Medical Director NHS England Richard Murray, CEO King’s Fund Kathryn Smith, Chief Operating Officer, Alzheimer’s Society |
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| 5.00pm | Recap of the day and closing remarks | Richard Madeley, TV Presenter and Journalist | |||||||||||||
| 5.30pm | Drinks reception and 40th Anniversary celebration | (supported by Surrey Cricket Club) | Morella Kayman, Vice-President, Alzheimer’s SocietyDuncan Jones, Trustee, Alzheimer’s Society | ||||||||||||
Programme – Day 2 – 22 May 2019
| Time | Title | Speaker | ||||||
|---|---|---|---|---|---|---|---|---|
| 9.00am | Registration, exhibition, posters and refreshments | |||||||
| 9.20am | Welcome and housekeeping | Duncan Jones, Trustee, Alzheimer’s Society | ||||||
| 9.30am | Address by the Secretary of State for Health and Social Care | Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care | ||||||
| 9.50am | Stepping up the global action on dementia | Lenny Shallcross, Executive Director, World Dementia Council | Fiona Carragher, Chief Policy and Research Officer, Alzheimer’s Society | |||||
| 10.15am | Working together to build inclusive communities | Catherine Anderson, CEO , Jo Cox Loneliness Commission | Sally Copley, Director of Policy, Campaigns & Partnerships, Alzheimer’s Society | Chloe Moffatt, Programme Manager, Girls Brigade Northern Ireland
Larry Gardiner, Steering Group member, 3 Nations Dementia Working Group |
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| 11.00am | Refreshments, exhibition, posters and networking | |||||||
| 11.30am | Parallel Sessions: |
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| 12.40pm | Lunch, exhibition, posters and networking | |||||||
| 1.15pm | Lunchtime drop-in sessions: |
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| 2.00pm | Welcome and introduction to the afternoon – Charlie Webster, Sports and Television Presenter | |||||||
| 2.05pm | Dementia Connect – support for everyone with a dementia diagnosis whenever they need it | Helen Foster, Director of Operations, Alzheimer’s Society | Max Oosman, Community Mental Health Nurse Practitioner, Lancashire NHS Foundation | |||||
| 2.35pm | Parallel Sessions: |
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| 3.45pm | Registration, exhibition, posters and refreshments | |||||||
| 4.05pm | Brain Health and Preventing Dementia | John O’Brien, Professor of Old Age Psychiatry, University of Cambridge | ||||||
| 4.35pm | Changing the dialogue on dementia | John Middleton, Actor | Jane Moore, Journalist and TV presenter | Trish Powell, Executive Producer, CPL Productions
Nicci Gerrard, Observer columnist and author |
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| 5.15pm | Recap of the day and closing remarks | Jeremy Hughes CBE, CEO, Alzheimer’s Society | Charlie Webster, Sports and Television Presenter | |||||
| 5.25pm | End of conference | |||||||
Sign up to Cupcake Day
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 up today
Hosting your Cupcake Day
- Sign up and 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
How you’re baking a difference
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!
Cupcake Day Website
Poster advertising the Fun Day.
Research Event
The Young Dementia Network would like to invite you to their second research event.
This event will provide an opportunity for people living with, or affected by, young onset dementia to connect with researchers and student researchers currently researching in the field of young onset dementia.
The focus of the day follows on from the research event we held last year where six topics for further research emerged. Young Dementia Network members have chosen three priorities
• Employment
• Health and social care education
• Family interventions (including children and young people)
We hope to secure funding to make this event free to attend but may have to charge up to £11 per person.
Monday 24 June 10.30am-4.00pm
Who will be attending:
• People living with young onset dementia
• Family members and carers
• Experienced researchers
• Early career researchers
• Junior researchers
Promote young onset dementia research
Consider three areas for further research
Develop partnerships and collaborations
Venue:
The Diamond
University of Sheffield
32 Ladygreave Road
Sheffield
S3 7RD
Places are strictly limited.
Please RSVP to express your interest in attending by Friday 31 May 2019 including any dietary requirements in your email. network@youngdementiauk.org
If you are a researcher and would like to present a poster that is relevant to young onset dementia, please let us know via email.
Poster presentations are limited to a maximum of 10.
This event is supported by:
University of Bradford
University of Nottingham
Young Dementia UK
ADI wants to hear what YOU think about Dementia!
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 Report 2019.
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 be available from:
15 April to 14 June 2019
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.
ADI wants to hear from:
- The general public
- Health and care professionals
- People living with Dementia
- Carers of people living with Dementia
Please visit www.alz.co.uk/research/world-report-2019 if you are interested in taking part and share the link far and wide!
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.
