Voices of people with dementia, their families and carers to shape new strategy
People with dementia and their carers will be at the forefront of improving the help and support they receive as a ‘National Conversation’ is launched on the condition.
This will be the first step towards a new dementia strategy. People living with dementia, their families and carers will be given the opportunity to spell out what is important to them, what needs to change, and how to build on the first dementia strategy in 2010.
This National Conversation will include a series of online and in-person discussions to make it as easy as possible to contribute. The responses will feed into a new strategy – driven by the National Dementia Lived Experience Panel – which will provide tangible ways to improve the lives of those living with the condition.
This builds on existing work on dementia. Last year the Scottish Government provided an additional £3.5 million over two years to strengthen the support given people with dementia and their families after a diagnosis. This funding is on top of an estimated £2.2 billion spent on dementia by local delivery partners annually.
Minister for Social Care Kevin Stewart said: “Scotland has a track record in supporting people living with dementia, as shown by our world leading commitment to provide immediate support in the first year after people receive a dementia diagnosis.
“If we are to improve that record further, we need to put people and carers at the vanguard of our policy work – helping us develop a new story together that improves the understanding of dementia and allows more people to live well with it.”
Responses will be open until Monday 5 December. The Scottish Government will work with the Lived Experience Panel to develop responses into a fully-formed, outcomes-focused Strategy. This will be published by April 2023.
Prime Minister launches national mission to tackle dementia, and doubles research funding to £160 million a year by 2024
New taskforce to speed up dementia research, using the successful approach of the Covid Vaccine Taskforce
Prime Minister calls for volunteers to come forward and join ‘Babs’ Army’ by signing up for clinical trials
Prime Minister Boris Johnson has launched a new national mission to tackle dementia and doubled research funding in memory of the late Dame Barbara Windsor.
Dame Barbara’s husband, Scott Mitchell, met with the Prime Minister earlier this week at Downing Street. They discussed the significant suffering caused by dementia and the slow process of finding treatments and cures.
In response, the Prime Minister has launched the ‘Dame Barbara Windsor Dementia Mission,’ in honour of Dame Barbara and the millions of other people and their loved ones who have had their lives ruined by dementia.
An additional £95 million in ringfenced funding will support the national mission, boosting the number of clinical trials and innovative research projects. This will help meet the manifesto commitment to double dementia research funding by 2024, reaching a total of £160 million a year.
The mission will be driven by a new taskforce, bringing together industry, the NHS, academia and families living with dementia. By speeding up the clinical trial process, more hypotheses and potential treatments can be tested for dementia and other neurodegenerative diseases.
The taskforce will build on the success of the Covid Vaccine Taskforce led by Kate Bingham.
Prime Minister Boris Johnson said: “Dame Barbara Windsor was a British hero. I had the pleasure of meeting her both on the set of Eastenders as Peggy Mitchell, and at Downing Street as we discussed the injustices faced by dementia sufferers.
“I am delighted that we can now honour Dame Barbara in such a fitting way, launching a new national dementia mission in her name.
“Working with her husband Scott, and on behalf of everyone who is living with dementia or has a loved one affected by this devastating condition, I am doubling research funding and calling for volunteers to join ‘Babs’ Army.’ We can work together to beat this disease, and honour an exceptional woman who campaigned tirelessly for change.”
One million people are predicted to be living with dementia by 2025, and 1.6 million by 2040. Up to 40% of dementia cases are potentially preventable but causes are still poorly understood. Dementia can affect the brain years before people show any symptoms, which means treatments need to be tested on people far earlier.
More clinical trials are needed but these are often overly time consuming, with resources wasted on trying to find volunteers.
The Prime Minister has today issued a call for volunteers with or without a family history of dementia to come forward and sign up for clinical trials for preventative therapies, nicknamed “Babs’ Army.’
Scott Mitchell, Dame Barbara’s husband, said: “The first in 15 Prime Ministers and over 70 years to grasp the nettle and reform social care, I’m so pleased that Boris had the conviction to do this reform.
“I’m so honoured that not only has he reformed social care, but he’s also committed this new money in Barbara’s name to make the necessary research breakthroughs to find a cure for dementia.
“Barbara would be so proud that she has had this legacy which will hopefully mean that families in the future won’t have to go through the same heart-breaking experience that she and I had to endure. I can’t stop thinking about her looking down with pride.”
Volunteers can register their interest through the Join Dementia Research website. The new taskforce, combined with the extra funding, will work to reduce the cost of trials while speeding up delivery. Existing NIHR infrastructure will be used, building on new ways of working pioneered during covid vaccination clinical trials.
A recruitment process will start this week for a taskforce lead, with the successful candidate focusing on galvanising action while ensuring the best use of tax-payer money.
The new national mission will build on recent advances in biological and data sciences, including genomics, AI and the latest brain imaging technology, to test new treatments from a growing range of possible options.
Researchers will look for signals of risk factors, which could help those who are at risk from developing dementia to understand how they might be able to slow or prevent the disease in the future.
Health and Social Care Secretary, Steve Barclay, said: “Anyone who lives with dementia, or has a loved one affected, knows the devastating impact this condition can have on their daily lives, but for too long our understanding of its causes have not been fully understood.
“By harnessing the same spirit of innovation that delivered the vaccine rollout, this new Dementia mission, backed by £95 million of government funding, will help us find new ways to deliver earlier diagnosis, enhanced treatments and ensure a better quality of life for those living with this disease, both now and in the future.”
Hilary Evans, Chief Executive at Alzheimer’s Research UK, said: “We’re delighted the Government has recommitted to doubling dementia research funding, and that our call for a Dementia Medicines Taskforce to speed up the development of new treatments has been heard.
“This marks an important step towards finding life-changing treatments for dementia and supporting our NHS to be able to deliver these new medicines to the people who need them when they become available.
“We are incredibly grateful to our tireless supporters who have helped keep dementia on the political agenda over the past three years. Over 50,000 people joined us in contacting their MPs, signing petitions, and even writing personal letters to the Prime Minster himself.
“The upcoming 10-year dementia plan is a chance for the next Prime Minster to make sure this funding is met with ambitious action and we look forward to working with the Government to turn it into a reality.”
Sporting Memories Foundation Scotland in partnership with Edinburgh Leisure will be running a weekly club, supporting older adults to stay active, connected within their local community, and build amazing friendships through their common love of sport.
Starting on Tuesday, 16th August 2022, the weekly, free drop-in sessions will take place every Tuesday, from 10.30am to 12.00 at the Royal Commonwealth Pool. The sessions are the perfect forum to reminisce about local sporting heroes, share stories about past playing days and show off your knowledge over a quiz or fun game. Everyone is welcome and a cuppa will be available too.
Donna Mackey, Partnership Manager, SMFS, “We are really excited to launch our newest Sporting Memories partnership at the Royal Commonwealth Pool, a venue at the real heart of Edinburgh’s sporting heritage.
“We believe there are lots of older adults in the area who have a passion for talking about sport and who will benefit from attending a weekly group with like-minded people. The clubs are a great opportunity to build new friendships and become more active by taking part in some of our indoor games. We can’t wait to get started.”
Sam Scott, Health Development Officer (Dementia) at Edinburgh Leisure said: “These sessions were originally due to start in April 2020 but for obvious reasons, they had to be put on hold.
“However, Edinburgh Leisure’s partnership with Sporting Memories Foundation Scotland makes perfect sense, as does hosting these clubs at the Royal Commonwealth Pool, a building steeped in its own sporting history. These clubs will support the work we are already doing working with people living with dementia through our Movement for Memories programme.
“Using the rich history and heritage of sport, the Sporting Memories clubs are open to older adults who enjoy reminiscing about their experiences of watching or playing it. We just want anyone, with a love of sport, to come along and refreshments are provided.”
The clubs are run by trained by Sporting Memories volunteers who use a wide range of Sporting Memories reminiscence resources developed specifically to help prompt conversation and discussion. There is always great fun and laughter, friendships are forged, and some remarkable sporting stories often emerge.
Sporting Memories has developed an innovative and engaging approach to tackling the challenges of our ageing society. Their work focuses on: reducing loneliness and isolation; getting older people physically active; and helping people to live well with dementia.
Edinburgh Leisure’s Active Communities team launched Movement for Memories in September 2018. This programme supports people living with dementia and their carers to become or remain physically active in Edinburgh.
This work is supported with funding from the Life Changes Trust. The Trust is funded by the Big Lottery.
Environmental campaigners say bold action to limit polluting traffic is needed as a new report showing the links between air pollution and dementia is released.
The report, published yesterday (25 July 2022) by COMEAP, the UK Government’s Committee on the Medical Effects of Air Pollutants, suggests the most likely way that pollution impacts cognitive impairment is through circulation. Air pollutants, particularly small particles, can affect the heart and blood vessels, including the brain.
Environmental campaigners say that the Scottish Government and local councils are not taking enough action to reduce pollution from transport and other sources. Earlier this year, research by Friends of the Earth Scotland showed that Scotland breached air quality limits in 2021 after a historic low in 2020 due to the pandemic.
Friends of the Earth Scotland’s transport campaigner Gavin Thomson said: “Today’s report from the UK Government is further evidence that air pollution is devastating for human health, and it’s really worrying to see the links with dementia being strengthened.
“We have known for a long time that traffic fumes cause asthma and heart conditions, and evidence has been growing about the risk that tiny particles – from exhaust fumes, tyres and brakes – pose to our cognitive health. It is particularly dangerous for young children, the elderly, and people with pre-existing health conditions.
“Four cities in Scotland will soon have small clean air zones limiting polluting vehicles from the city centre. This is the first action we’ve seen to tackle air pollution but it’s nowhere near enough. To improve air quality in our communities and neighbourhoods, we need significant investment in public transport so that everyone can access it, while providing more space for walking, wheeling and cycling.”
Extra £1 million will help people shape the services they need
A £1 million investment over two years will fund work with people with dementia and their families to design and shape the support they need following diagnosis.
The funding, part of the £120 million Mental Health Recovery and Renewal fund, will see the Scottish Government working with Age Scotland to enhance support giving people a bigger say in what works for them.
COVID-19 has had a disproportionate impact on people with dementia. Through this partnership with Age Scotland, the Scottish Government will grow the community support that have been so critical to people and their families during the pandemic.
Early investment will be focused on building community capacity with a small grant programme, with a broader community grant programme to follow in the second year.
Social Care Minister Kevin Stewart said: “During the latest phase of the pandemic I have listened to people with dementia and their families about the need for additional flexible support and investment to help address some of the particular challenges they are facing.
“COVID-19 has impacted all of us but I know just how challenging it has been for people living with dementia, their families and carers.
“Trying to reduce this impact is the basis of our Dementia and Covid Action Plan, which we have worked with a wide range of partners to implement, since its publication in December 2020.
“There is a lot of positive work to point to, and the pandemic has particularly highlighted the importance of community-led work, responding to local need. I want to build on this work and enable more local people and communities to design and shape the support they need.
“Through this partnership with Age Scotland we will invest an extra £1 million over two years to support local communities to do that.”
Brian Sloan, Chief Executive of Age Scotland, said: “We’re delighted to be working with the Scottish Government to deliver this funding, which will support the development of dementia-friendly communities across Scotland.
“The pandemic has compounded challenges faced by people living with dementia and their unpaid carers. This funding will help address some of these challenges by shaping communities that work for those who have lived experience of dementia.
“Our role is to bring the voices of carers and people living with dementia to the forefront as plans are developed, ensuring those voices are heard at every stage of the design and delivery process. By doing so, we can build communities that truly support and empower people living with dementia and those who care for them.”
Alzheimer Scotland’s winter fundraising appeal launches this week to spread a little bit of magic
The campaign called ‘Magic’ asks for donations to help them continue their work
Danny McDonald and his wife Catherine from Clydebank, West Dunbartonshire, have shared their story to highlight the campaign
Every penny raised in Scotland stays in Scotland to fulfil Alzheimer Scotland’s mission that nobody faces dementia alone
Alzheimer Scotland has launched a winter campaign this week to help them continue their work to make sure that nobody faces dementia alone.
The charity provides support and information to people with dementia, their carers and families, and campaigns for the rights of people with dementia and fund vital dementia research.
Alzheimer Scotland Chief Executive, Henry Simmons, said: “We simply could not provide the level of support we do without such dedicated supporters – thank you to each and every person who make it possible for us to support people with dementia and their families and carers.”
Danny McDonald (57) from Clydebank in West Dunbartonshire was diagnosed with vascular dementia five years ago when he was 52. He is a member of the Scottish Dementia Working Group, a campaigning group run by people with dementia and funded by Alzheimer Scotland and the Scottish Government.
Danny said: “My diagnosis was quite earth shattering for us. The first thing that came into my mind was how was this going to change our lives?
“My outlook was just to be the best husband and father that I could be regardless of the diagnosis because inside I’d not really changed.”
Danny’s wife Catherine added: “We got quite a blunt diagnosis. Danny was told, ‘you’ve got memory problems and you’ve had a stroke so therefore we’re giving you a diagnosis of dementia. We’ll see you again in six weeks‘.”
“So we left and sat in the car and we both had a cry and asked ‘what’s just happened? Where do we go from here? “
They phoned their local Dementia Resource Centre to get some information and the Dementia Advisor offered to visit them the next day.
Danny said: “The Dementia Advisor’s support was excellent, there’s always someone you can talk to. Life would be very difficult for us without Alzheimer Scotland, they’ve had such a positive impact in our life. The Dementia Resource Centre is like my second home.”
Can a healthy lifestyle combat undernutrition and dementia?
The PROMED-COG (PROtein enriched MEDiterranean diet to combat undernutrition and promote healthy neuroCOGnitive ageing) Consortium brings together unique expertise to better understand how the balance between diet and physical activity could reverse undernutrition during ageing and, ultimately, prevent dementia.
The research led by Queen’s University Belfast will provide new and critical insight into the role of undernutrition in cognitive health. It will explore how diet and exercise can work to combat undernutrition and the effect of factors – such as age, gender, and genetics -on the risk of dementia in older age.
One in ten adults aged 60 years+ are undernourished, which means that they have low levels of proteins, calories, vitamins, and minerals caused by reduced food intake or because the body does not process food properly.
Undernutrition has a negative impact on the health of older people as it leads to weight loss and increases the risk of dementia in later life.
PROMED-COG project co-ordinator, Dr Claire McEvoy from the Centre for Public Health at Queen’s University Belfast, said: “Weight loss increases the risk of dementia by up to 40% but occurs a decade or more before the symptoms of memory loss become apparent.
“This gives us an opportunity to intervene early with preventative strategies to counteract undernutrition and, potentially, the onset of cognitive impairment.”
Dementia is a major health priority. It already affects around seven million people in Europe, a figure set to double by 2030, with socioeconomic costs rising to over €250 billion.
While factors, such as age and genetics, influence the onset of dementia and cannot be changed, some lifestyle changes could make a difference. PROMED-COG will use existing datasets in Italy to study the links between undernutrition, cognitive decline, and dementia.
The project will also test the effect of adopting a diet and exercise intervention over six months on undernutrition and cognition in older adults living in Northern Ireland. This will inform the recommendations developed to slow down cognitive decline and prevent dementia in older European citizens.
Dr McEvoy added: “Dementia is a huge problem affecting our ageing population. There is a significant lack of research in this area and this new grant will bring together a range of European experts to develop evidence-based recommendations for the prevention of undernutrition and cognitive impairment during ageing.
“This will not only prolong the period of life spent in good health but will also reduce the societal and economic burden of dementia.”
The European Horizon 2020 Joint Programming Initiative “A Healthy Diet for a Healthy Life”, and ERA-NET Cofund ERA-HDHL (GA N° 696295) has awarded a grant of over 680,000 euros to the PROMED-COG consortium. Led by Queen’s University Belfast, the Consortium includes The National Research Council Italy, The University of Padova, University College Dublin, Wageningen University, and The Friedrich-Alexander-Universität Erlangen-Nürnberg.
Police Scotland is encouraging the friends and family of people living with dementia to sign up to the Herbert Protocol.
On Tuesday – International Alzheimer’s Day – Police Scotland adopted a single national process to help officers quickly obtain information about a vulnerable missing person who has dementia, saving vital time in the early stages of an investigation.
The national implementation of the Herbert Protocol has been developed in partnership with Police Scotland, Health and Social Care Scotland, Alzheimer Scotland and the Scottish Government.
The form is completed in advance and generally kept in the person’s home or with relatives. It holds personal details, a description, a recent photograph, languages spoken, as well as previous addresses, places of employment and other significant locations in someone’s life. This can include their old school, a church, or a favourite walking route, plus their medical history and information about past incidents of going missing.
While the Herbert Protocol is in use in a number of Scottish policing divisions, a single form is now available nationwide to optimise the police response to locate the person and return them home, safe and well, as quickly as possible.
The Herbert Protocol form can be used together with Alzheimer Scotland Purple Alert, a free app designed to help finding missing people with dementia. If someone is missing, users will get notified via the app and can help with local searches.
Assistant Chief Constable Gary Ritchie(Partnerships, Prevention and Community Wellbeing) said: “When a person goes missing, the first hour is vitally important. Previously, we would have spent a significant amount of time gathering information from family, friends or carers, but being able to give officers a completed Herbert Protocol form saves valuable minutes and hours.
“We hope that families who choose to complete a form will never have to use them. But if they do, having that completed form to hand gives relatives or carers peace of mind that they’re providing the police with detailed, relevant information to enable us to send officers to places where your loved one may be.
“We are completely committed to protecting vulnerable people from harm and having the Herbert Protocol in place Scotland-wide is a significant step towards keeping people safe.
Morag Francisis a carer for her mum, who has a dementia diagnosis. Her family has already completed a Herbert Protocol form.
Morag explained: “We did it as a little project with Mum, because it was about her life, so it turned into a bit of a reminiscence session, so we could pinpoint areas that were still important to her.
“We could guess most of them because she did talk a lot about the past, but we wanted to make sure we’d thought of all the areas she might turn up at because that’s where she remembered.
“To me it’s my insurance document, because I appreciate if we couldn’t find her the levels of stress would be incredible and we wouldn’t really be able to think straight.
“Everyone in the family who’s on the form as a contact has the Herbert Protocol saved in their emails, so if something did happen we would have very quick and easy access to it on our phones and we could email it to whoever needed it.
“Having that ready to go is very reassuring to me as her daughter. It’s really important to have it there, just in case.”
Alzheimer Scotland Deputy Director Joyce Gray said: “Alzheimer Scotland is fully committed to our partnership with Police Scotland, and delighted to endorse any opportunities to support families to use the Herbert Protocol.
“The Herbert Protocol and Purple Alert will help us to make people living with dementia safer in Scotland. We are proud of the partnership and in these world leading initiatives which help support our communities.”
Kevin Stewart, Minister for Mental Wellbeing and Social Care, said: “Having a loved one with dementia go missing is a very stressful time for families, friends and carers and the priority is to find the person safe and well and as quickly as possible.
“The Herbert Protocol is a straight-forward way for families and carers to provide all the necessary information easily and efficiently in one form which will save vital time in missing person enquiries.
“I welcome the national roll-out of this partnership which is being taken forward by Police Scotland, Health and Social Care Scotland, Alzheimer Scotland, Scottish Care and the Scottish Government.”
Judith Proctor, chair of the Chief Officers’ Group, Health and Social Care Scotland, said: “We are delighted to be a key partner supporting the national roll out of the Herbert Protocol.
“Care professionals across health and social care partnerships in Scotland will be encouraging and supporting family and friends of people at risk of going missing to complete and hold onto this simple form. It’s another proactive way we can all work together in our communities, helping to keep people safe.”
L to R: ACC Gary Ritchie, Ch Supt Linda Jones, Tommy Petillo (Alzheimer Scotland), Supt Norrie Conway, Karen Thom (Edinburgh Health & Social Care Partnership)
Alzheimer’s Research UK champion Karen Penny is set to complete her amazing 11,000 mile coastal walk around the UK and Ireland on World Alzheimer’s Day, 21 September, in the Shetland Islands.
Karen, 54, had been travelling since January 2019 on foot from her home in the Gower, South Wales around the entire coastline of the UK and Ireland, only returning home when forced to by the COVID-19 pandemic.
She had reached the small island of Muckle Flugga in the Shetlands (one of 110 islands that she has walked around as part of her journey), where she planted a flag before returning to her South Wales home for lockdown.
Inspired to support the UK’s leading dementia charity after both of her in-laws were affected by different forms of dementia, Karen has raised nearly £100,000 to fund vital research.
Karen says: “I can’t believe that my walk is coming to an end. I was so sad to have to leave the beautiful Shetland Islands last March because of COVID-19 restrictions, and I am now really excited to be returning to Muckle Flugga. I wonder if my Alzheimer’s Research UK flag is still where I left it!
“The last two and a half years have been wonderful. Although it has sometimes been hard going, I have met so many great people, and heard so many heart-rending stories of the impact of Alzheimer’s disease and the other diseases that cause dementia on families.
“It has made me all the more determined to do whatever I can to raise awareness and raise money for Alzheimer’s Research UK, so that in future families can be spared the fear, harm and heartbreak that so many are currently experiencing.”
Hilary Evans, Chief Executive of Alzheimer’s Research UK, said: “We are so grateful to Karen for the amazing fundraising and awareness-raising that she has done, with such commitment, since the beginning of 2019.
“As Karen has found with all the people who have shared their experiences with her on her journey, one in two people know someone affected by dementia. Through research, we can keep people connected to their families, their worlds and themselves for longer.
“Research has the power to make breakthroughs possible and Alzheimer’s Research UK is at the forefront of these efforts. We rely on public donations to fund our crucial research and it’s thanks to the commitment of people like Karen that we are able to increase the profile of dementia research and continue our important work.”
Newpartnership launches new website for carers of people with dementia
This week a partnership between Edinburgh charity Hearts & Minds, Designed by Society, Wee Culture and Edel Roddy launched a new website with valuable resources for unpaid and professional carers of people with dementia and anyone who has an interest in care for people in the later stages of dementia.
All of the partners have direct experience of working in the area of later stage dementia and developing resources. The project was funded by Dementia Series Development Trust.
The Treasure We Seek Project is based on the principles of the work of Hearts & Minds Elderflowers who use the art of therapeutic clowning to encourage moments of engagement, communication and movement with ladies and gents with dementia. The project took those principles and developed two sets of resources ‘Valuables’ and ‘Treasure Hunt’
Project LeadEdel Roddy explained: “The Treasure We Seek website was launched this week offering two free resources for people to feel connected to people living with later stage dementia.
“The resources have been developed with the hope they will be useful across a range of settings including schools, community groups, carers organisations and care settings, and we were thrilled with people’s responses.
“Initial feedback highlighted that people have started to develop ideas about how they will try out the resources, and potentially make them their own, with friends, family and in work settings. Attendees at the launch even helped us think about other contexts in which these resources could be used, the possibilities of which feel exciting.
“If you missed the launch you can find the resources on www.thetreasureweseek.net and we’d like to hear from anybody who tests them out or has thoughts or ideas about this work they’d like to share.”
These resources will help relatives and professionals to cope and care and also to evaluate how they feel and take notice of their own wellbeing so they don’t feel stressed or isolated.
Hearts & Minds is an award winning Scottish charity that works in collaboration with paediatric healthcare units, respite centres, schools for learners with complex additional support needs and Dementia units to deliver laughter, friendship and support to those who need it most.
Our Clowndoctors Programme supports children and young people to cope with life in a hospital, hospice or respite care setting and in schools for learners with complex additional support needs.
Our Elderflowers Programme helps people living with dementia or dementia-related conditions in hospitals and residential care homes.
Through playfulness, smiles and laughter, we help all of these vulnerable people to deal with the anxiety, fear, confusion and sadness that their situations and conditions may bring.
Dr Gayle Rice is an experience researcher and designer for Designed by Society. Her research background is qualitative and creative and focuses on people’s current and desired experiences. Her design practice involves designing to enable improvements in people’s experiences of social interactions.
Wee Culture
Belinda Dewar is a registered nurse, researcher, educator and practice developer with a career spanning over 30 years. She is currently Director of Wee Culture which aims to support people to explore and enhance culture.
She previously held the position of Professor of Practice Improvement at the University of the West of Scotland and the Lead for My Home Life Scotland.
The Dementia Series Development Trust
Dementia Series Development Trust is a charity with a vision to improve the lives of those living with dementia through the funding of activities which support this aim.
The Principles which guide the work of the DSDT are:
Proactive
Pump priming
Partnership
The Disruption Award funds projects which strive to disrupt some of the old ways that people think about dementia, and communicate new ideas that reframe it.
