Tag: dementia

Project aims to speed up delivery of treatments for motor neuron disease

A new project by researchers in Edinburgh aims to identify combinations of existing drugs that could be used together to treat motor neuron disease (MND).

Led by Prof Siddharthan Chandran, Group Leader at the UK Dementia Research Institute (UK DRI) and Director of the Euan MacDonald Centre for MND Research, both at the University of Edinburgh, the £3.3 million project is funded by the medical research charity LifeArc, as part of an ongoing partnership between the charity and the UK DRI.

The partnership brings together the strengths of UK DRI’s research into discovery science with LifeArc’s translational expertise to take exciting lab discoveries forward and translate them into tangible benefits for patients.

MND is a life-limiting condition that causes progressive weakness of the muscles due to the degeneration of motor neurons in the brain and spinal cord. There is currently only one drug approved to treat the disease in the UK, riluzole, which has only a modest effect.

There is an urgent unmet need for effective therapies to treat MND. But the brain is complex, and targeting one biological pathway with a single drug might not be enough to slow down or stop the degeneration of motor neurons.

The new project seeks to drastically accelerate the development of new treatments by identifying existing drugs which target multiple disease mechanisms implicated in MND.

Typically, new drugs can take up to 15 years to progress through development and clinical trial stages, but with this approach, treatments could be tested in the clinic within four years.

Prof Siddharthan Chandran, Group Leader at the UK Dementia Research Institute (UK DRI) and Director of the Euan MacDonald Centre for MND Research, both at the University of Edinburgh, said: “As has been shown for cancer therapy, using combinations of drugs that target different pathways might be our best chance of slowing or stopping the progression of MND.

“This innovative project is an important next step in identifying effective medicines for MND.”

In the first stage of the study, the researchers will prioritise the top drug candidates, using both laboratory-based tests on motor neurons grown in the lab from patient donated stem cells, and a machine-learning, artificial intelligence approach to review published scientific studies of MND.

Next, the top candidate drugs will be tested in pairs in combination in the stem cell models of MND, against different biological pathways known to be implicated in MND.

The ultimate goal is to seek regulatory approval to test the most promising and effective combinations of drugs in the Euan MacDonald Centre’s MND-SMART (Motor Neuron Disease – Systematic Multi-arm Adaptive Randomised Trial) trial.

This pioneering trial across 20 sites in the UK is designed to shorten the time it takes to find medicines that can slow or stop MND. Unlike typical clinical trials which test a single treatment, MND-SMART is testing several treatments at the same time. It is also an adaptive trial which means that new drugs can be added, and those proven ineffective can be dropped.

This new project complements another recently announced MND initiative, EXPERT-ALS, which aims to rapidly identify promising drug candidates in small scale trials, before definitive evaluation in Phase 3 platform trials such as MND-SMART.

Dr Paul Wright, MND Translational Challenge Lead at LifeArc said: “Our involvement in this research is part of an ambitious long-term £100m funding programme we have launched to help tackle neurodegenerative conditions and find treatments where none currently exist. 

“By working with UK DRI we are uncovering promising life science research, like Professor Siddharthan’s, that we can support with funding or by offering our scientific resources and expertise in translational research.

“Ultimately, our aim is to accelerate the process of finding medical breakthroughs that can prevent and stop these life-threatening diseases progressing.”

Scottish community groups celebrate after winning public vote for National Lottery funding

SUCCESS FOR MORNINGSIDE’s OPEN DOOR CAFE MUSIC PROJECT

Nine hard-working Scottish community groups have won up to £70,000 each of National Lottery funding in this year’s The People’s Projects. The vital funding was awarded after they won the public over with their plans to make a life-changing difference in their local communities.

The groups were among 95 worthwhile projects across the UK in the running to share over £4 million in National Lottery funding as part of this year’s The People’s Projects.

The People’s Projects sees The National Lottery Community Fund, ITV, UTV and the Sunday Mail (in Scotland) working together to give the public a unique say in how National Lottery funding should be invested in their local area.  

One of the winners was The Open Door Edinburgh’s Music for Health and Wellbeing project.

The Morningside project will use the power of music – songs, sounds and rhythms – to improve the health and well-being of older people with dementia and other support needs. They will also provide a range of Daycare services that helps the elderly, and the most vulnerable in the community, to age well.

Visit www.thepeoplesprojects.org.uk to see a full list of winning projects across the UK.

Since The People’s Projects started in 2005, it has awarded around £45 million to over 1,000 good causes, delivering vital grants to the heart of UK communities.

Kate Still, Scotland Chair, The National Lottery Community Fund, said: “The People’s Projects highlights the incredible work of inspiring community groups in Scotland and throughout the UK. We are proud to have given local people throughout the country a say in where over £4 million of vital National Lottery funding will go.

“We congratulate this year’s winners and look forward to seeing them make a life-changing difference in their communities.”

The National Lottery Community Fund, the largest funder of community activity in the UK, distributes money raised by National Lottery players, who raise over £30 million each week across the UK for good causes.

Last year, it awarded over half a billion pounds (£579.8 million) of life-changing funding to communities across the UK, supporting over 14,500 projects. Over the last three years, its funding has reached every constituency and every local authority in the UK.

To find out more visit www.TNLCommunityFund.org.uk  

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Taking action on dementia

New plan to improve quality of life

Improving the lives of people with dementia is at the heart of a new 10 year strategy announced by the Scottish Government yesterday.

The strategy, Everyone’s Story, outlines a vision for dementia policy over the next decade and identifies a number of priorities which would improve the lives of people living with dementia, their families and carers.

These include support pre and post diagnosis, actions to enable more people to live well in their communities, involving those affected in the design and delivery of their own support and access to care from a skilled and trauma-informed workforce when appropriate

The strategy commits to tackling stigma as a priority and aims to do this by making sure two-year delivery plans will be agreed to ensure progress is made. The first plan is to be published at the end of this year. 

The strategy, launched during Dementia Awareness Week, is a joint publication by the Scottish Government and the Convention of Scottish Local Authorities (COSLA).

Mental Wellbeing Minister Maree Todd said: “Dementia is a brain health condition which impacts at least 90,000 people across Scotland, as well as their families and their communities. This strategy sets out what we want to achieve and the difference we want to make to people’s lives.

“Diagnosis can bring significant mental health and wellbeing challenges that need to be acknowledged and addressed to ensure a person’s rights are upheld. That’s why the strategy was developed in collaboration with the National Dementia Lived Experience Panel. We want everyone affected to be involved in its delivery.”

COSLA Health and Social Care spokesperson Councillor Paul Kelly said: “We welcome this strategy as it rightly challenges us to do more and go even further, to continue to improve the care and support for people living with dementia and their care partners.

“Delivering it will require us all to continue to work collaboratively in a positive and proactive manner, while respecting each other’s different experiences of dementia.”

Everyone’s Story  

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Stockbridge charity’s services are a cut above!

LifeCare Edinburgh launches new dementia-friendly hairdressing service helping local older people “feel like themselves again”  

COVID restrictions taught us all how much we value a visit to our local hairdresser to help us feel like ourselves, boost our self-esteem and to simply enjoy a chat and a catch-up with a friendly face.  

Sadly, for people living with dementia this lockdown experience can be a permanent feature in life as visiting an everyday salon can be inaccessible, overwhelming, and without the right training, difficult for a hairdresser to deliver well.  

However, things are changing in the capital as local charity LifeCare has launched the city’s first dedicated dementia-friendly hairdressing service providing essential haircare services for people living with dementia and their unpaid carers.

LifeCare’s new ‘Forget-Me-Not’ hair service involves an experienced, caring and dementia-trained mobile hairdresser visiting people in their homes so that they can continue to experience the joy of a haircut.  

The benefits of a hairdressing experience for a person living with dementia can be significant.  Haircare helps people to maintain their appearance but also impacts how they feel, their personal identity, and their overall self-esteem.

For a person living with dementia, hairdressing can be a unique multi-sensory experience providing a valuable opportunity for touch and physical contact which is often missing outside of practical interactions.

Regular visits and time for conversation can reduce feelings of isolation and loneliness. Feelings of self-worth and positive self-image are boosted and this increased confidence can mean people are more likely to be motivated to attend other activities and stay engaged with their community.

Evidence shows haircare services support reminiscence activities as scents and experiences involved can be incredibly evocative and personal appearance can relate to people’s life stories and relationships. 

James Wells, Chief Executive of LifeCare said “It’s sad and unfair that people living with dementia struggle to access ordinary haircare services that many of us take for granted.  

“The typical busy, hot and noisy hair salon environment can just be too overwhelming for some and a lack of understanding amongst hairdressers can make the experience really difficult for everyone. Mobility issues and transport concerns also create problems.   

“At Lifecare, we have a proud 80-year history of providing essential care services for local older people, ensuring no-one is left alone or isolated and that everyone can continue to enjoy the joy in their lives.  So, we’re absolutely delighted that we are now able to launch this dedicated service which will make an immediate positive and life-changing difference to our older clients and their carers.

“We are already hearing from clients how they “feel like themselves again” and “can’t wait for their next appointment”. I’m looking forward to hearing more of these stories as the service continues to grow.” 

Audrey McDonald, LifeCare’s dementia-friendly hairdresser said: “It is an absolute pleasure to be helping to deliver this fantastic service. From my own personal experience, I understand how frustrating it can be for a person to be shut-out of these important pleasurable activities.

“Even a small trim can cheer a person up for the day. In just a few short weeks, I have already seen how much joy the service is bringing for local people.  

“Together we are enjoying a giggle, a chat about old times and everyone is left feeling a million dollars.” 

The charity relies on support from its funders to deliver all of its essential services.  The Forget-Me-Not Salon has been made possible thanks to financial support from Age Scotland’s About Dementia project in partnership with the Scottish Government.   

Head of Dementia at Age Scotland, Dr Kainde Manji said “We are excited to support LifeCare in their delivery of a dedicated haircare service for people with lived experience of dementia, and we recognise the importance of this type of community-based support in enabling ordinary activities that make a big difference to individual wellbeing.

“We know that increasing wellbeing and tackling social isolation can empower people with lived experience of dementia to take a more active role in their communities.” 

The “Forget-Me-Not” hair service has been initially set up as pilot project offering the service to clients for free to ensure that it is accessible to all.

If you know of someone living in the north of Edinburgh who could benefit from the service contact 0131 343 0940 or visit www.lifecare-edinburgh.org.uk/services/home-salon.  

To donate or find out other ways to help visit https://www.lifecare-edinburgh.org.uk/  

Dementia book launch at Stockbridge Library

Are you interested in learning more about dementia and how to support those who are affected by it? Do you have dementia and have questions about what it all means? A new self-help book, “FAQs on Dementia” written by Tom Russ and Michael Huddleston comes out today!

To celebrate this exciting release, there will be a book launch event at Stockbridge library on Friday 5th May, from 3.30pm-4.30pm. The event will feature the authors, and some friends and colleagues with dementia. Representatives from Alzheimer Scotland, Brain Health Scotland, the NRS Neuroprogressive and Dementia Research Network will be there to share information.

The Golden Hare bookshop will be in attendance to sell the book, so you will have the chance to buy your own copy at the event.

Here’s an extract from the blurb:

Will my partner stop loving me now they have dementia?

Does my mum have to go into a home now?

Is dementia a terminal illness?

All these questions, and hundreds more, are covered in this short but powerful, helpful, practical guide to understanding the nature, and impact, of dementia. Read at your leisure, or dip in and out when you most need the support or to shine a light on the issues and concerns that are making you uncomfortable or unhappy, and to bring them out of the shadows so you can understand and accept them.

The Edinburgh Practice launches a city-wide art competition in partnership with Alzheimer Scotland

Mental healthcare specialists, The Edinburgh Practice, has announced a city-wide art competition, entitled ‘Memory: Your Perspective’ in collaboration with its 2023 charity partner, Alzheimer Scotland, which will be officially unveiled at the opening of its new 6,500sq ft multi-purpose, custom built 26 room clinic in Waverley Square this summer.

The company, founded by Dr Fiona Wilson in 2017, has outgrown three sites in the city due to exponential growth over the last two years and is counting down to opening its new clinic which will include new specialist services for older adults including the provision of dementia assessments through the practice’s new Memory Clinic.

The competition, which has five categories; primary school pupils, secondary school pupils, adults aged 18-65, adults aged 65 plus, and people living with dementia, (or caring for someone with dementia) ties in with the range of new services for older adults and will also help raise awareness of the support offered by Alzheimer Scotland.

The theme for the competition is about encapsulating people’s interpretation of memory, which can range from a fond memory of quality time with grandparents or memorable past experiences of places, people and moments. Entries can be submitted in A0, A1, A2 or A3 format and be submitted digitally by emailing ella@edinburghpractice.com by 5pm on Friday 19th May 2023.

The winning artist in each category will receive a £100 voucher for the St James’ Centre, and their artwork will be displayed for one year in the new practice at Waverley Square.

Dr Fiona Wilson said: “Supporting the wider community is very important to us at The Edinburgh Practice and I am thrilled to announce that our 2023 charity partner is Alzheimer Scotland. 

“The charity is doing tremendous work in supporting people with dementia and carers, as well as creating awareness about brain health across the life span. 

“We hope that our ‘Memory: Your Perspective’ art competition will stimulate awareness and discussions among all age groups in the community as to how important brain health is to preserve our memory for as long as possible.

“We are very much looking forward to unveiling the winning artworks in each category at our launch event in the summer.”

Josh Munns, Stakeholder Engagement Leader at Alzheimer Scotland, commented: “We are delighted to be the charity partner for The Edinburgh Practice who are helping to raise crucial funds and vital awareness for Alzheimer Scotland.

“People living with dementia and those who love them continue to be disproportionately affected by the legacy of the pandemic and the effects of the cost-of-living crisis so it’s essential that we continue to be there to make sure no one faces dementia alone.

“Without the support of organisations like The Edinburgh Practice we wouldn’t be able to support the 90,000 people living dementia, their families and carers”.

Reading is Caring: New support for people living with dementia

Scottish Book Trust, the national charity working to change lives with reading and writing, has launched a series of free workshops, available online and in local libraries, designed to help those who support and care for people living with dementia.

The charity runs Reading is Caring, a programme which provides personalised training on creating shared, sensory reading experiences to those caring for someone living with dementia – whether that’s a partner, relative, friend or professional carer. Reading is Caring is designed to ease daily challenges by creating special moments of connection, sparking positive memories and relieving stress.

A Reading is Caring participant, caring for her mother who lives with dementia, said: ‘Reading is Caring was fantastic. The stories bring mum into the here and now. She laughs, she’s interested and engaged. I get a glimpse of her personality again, which is lovely for both of us.’

Now in its third year, Reading is Caring has been proven to provide a consistent, connective activity for family, friends, and professional carers to use at every stage of the dementia journey.

People in Edinburgh and the Lothians who support someone living with dementia can attend a two-part workshop series online, or head along to one of the drop-in sessions at Craigmillar Library and Musselburgh Library.

These free workshops provide the knowledge and tools needed to share reading with someone living with dementia. Scottish Book Trust provide personal support throughout and after the training to help tailor the experience to the unique needs of each person, removing barriers to participation at every stage of their dementia journey.

Musselburgh Library workshops:

  • Monday 27 February: 3–4pm
  • Monday 6 March: 3–4pm
  • Monday 13 March: 3–4pm
  • Monday 20 March: 3–4pm
  • Monday 27 March: 3–4pm
  • Monday 3 April: 3–4pm

Craigmillar Library workshops:

  • Thursday 2 March: 10.30–11.30am
  • Thursday 9 March: 10.30–11.30am
  • Thursday 16 March: 10.30–11.30am
  • Thursday 23 March: 10.30–11.30am
  • Thursday 30 March: 10.30–11.30am
  • Thursday 6 April: 10.30–11.30am

Online workshops take place regularly and can be found on Scottish Book Trust’s website.

The Edinburgh Practice unveils major expansion plans

 LAUNCH OF STATE-OF-THE-ART HEALTH CLINIC AT WAVERLEY SQUARE

The Edinburgh Practice, which specialises in providing expert mental healthcare, has unveiled major expansion plans to triple the size of their current premises into a purpose-built, 6,500 sq ft practice in Waverley Square, set to open in the summer, allowing them to expand their range of services, increase their client base and double the team from 50 to 100.

The New Town-based, award-winning company, which offers psychiatric assessment and treatment and a range of therapies including psychological, speech and language, educational and family therapy, began with one member of staff, Clinical Psychologist and founder, Dr Fiona Wilson, in 2017. Within three years the team increased to 32, resulting in the opening of two additional premises in the area.

Plans to combine all three sites into a single, purpose-built clinic to allow the company to expand its services and grow the team further have been in the pipeline for the last 18 months and now that building work has begun, the timeline to launch the new premises is on track for early summer. 

The state-of-the-art practice will feature 26 therapy rooms, a large meeting space for in-house and community events, and a dedicated staff area. It has been carefully designed to be a healing space which matches both clients’ therapeutic needs and staff wellbeing. 

Dr Wilson said: “We’re delighted to be taking this next step in our journey and finally be able to match up service demand and service provision in our own custom-built practice set to open in the summer.  As opposed to continuing to open more and more practices in the city, it made sense to us to bring everything together under one roof.

“Searching for help when struggling with your own or a loved one’s mental health difficulties is extremely hard, which is why our goal has always been to provide easy and fast access to high-quality, evidence-based treatment and therapy, in a safe, compassionate way.

“Our new custom-built practice, which is tripling the size of our current square footage, will allow us to be able to help even more people by expanding our existing wide range of services and launching new ones across all age groups, including an Early Years Service, Occupational Therapy Service and an Older Adults Service, where dementia assessments will be accessible through the practice’s new Memory Clinic.

“This expansion represents an exciting continuation of the development of The Edinburgh Practice, and we have a strong pipeline of new service development projects for 2023 and beyond.”

The Edinburgh Practice Awards include ASB Young Business of the Year Award 2018 and 2019 Finalist for Start Up Business of the Year Women’s Enterprise Scotland Awards.

Website: www.edinburghpractice.com

Facebook: The Edinburgh Practice

Instagram: @theedinburghpractice

Dementia: A National Conversation

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.”

A national conversation to inform a new Dementia Strategy

Discussion paper

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 ‘Dame Barbara Windsor Dementia Mission’

  • 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.”