Tag: dementia

Dementia-friendly events and opportunities in Edinburgh and the Lothians

The Scottish Government, in partnership with COSLA, recently launched a new campaign to challenge the stigma surrounding dementia. The drive encourages people to continue doing the things they always did with friends or relatives diagnosed with dementia, highlighting that these everyday activities can help them stay well for longer. 

Staying connected to communities can also play a key role in helping people with dementia remain socially active and engaged. Across Scotland, there are numerous services, groups and activities designed to provide enjoyment and support.

For people in Edinburgh and the Lothians, opportunities and events include:

  • Deepness Dementia-Friendly Arts Festival in Edinburgh – taking place from Monday 11 November to Thursday 14 November, the Dementia Arts Festival, will showcase the best of music, theatre, poetry and film, all produced by those diagnosed with dementia. For more information, visit: deepnessdementiaarts.co.uk/
  • Museum Socials at the National Museum of Scotland – each month a different museum theme is explored through interactive activities, including curator talks and creative crafts. For more information, visit: nms.ac.uk/events/museum-socials
  • The Royal Botanic Garden Edinburgh, Dementia Friendly Garden Social – monthly meetings in the purpose-built Garden of Tranquility with refreshments and activities provided. It’s an opportunity for guests to find out about how the garden works. For more information, visit: rbge.org.uk/whats-on/dementia-friendly-garden-social/57082
  • Festival Theatre Edinburgh, Brew & Blether – a free monthly social gathering for people living with dementia and their friends and family to come together for tea, biscuits and a chat. For more information, visit: capitaltheatres.com/whats-on/all-shows/dementia-friendly-a-brew-and-blether/2072
  • National Galleries Scotland, Gallery Socials – monthly sessions where attendees, led by artists, will have a chance to take part in a light-touch art activity and take a tour. In November, the event at the Portrait Gallery is a celebration of 40 years of Scotland’s Photography Collection. For more information, visit nationalgalleries.org/event/gallery-social-dementia-friendly-celebrating-40-years-of-scotlands-photography-collection
  • Dementia-friendly East Lothian –a community organisation which supports social groups and activities for people living with dementia including care-partners, families and friends. They hold regular workshops, activities and trainings. For more information, visit dfel.org.uk/
  • Singing For Health, Whitburn Bowling Club, West Lothian – fortnightly informal sing-a-long with refreshments as part of a partnership between Alzheimer Scotland and the Ageing Well project. For more information, visit: roseberycentre.org.uk/
  • The Heart Dementia Meeting Centre, Newhaven – a weekly social club on a Wednesday at 10.30am, for people living with mild to moderate dementia including those newly diagnosed or curious about cognitive decline. An opportunity to get creative whilst speaking to like-minded people. For more information, visit: heartofnewhaven.co.uk/The-Heart-Dementia-Meeting-Centre.php

This is just a selection of the creative opportunities and activities available. For more ideas of things to do or places to visit, search dementia friendly at aliss.org (A Local Information System for Scotland).

Dementia affects an estimated 90,000 people in Scotland and 3,000 of whom are under the age of 65. Created in collaboration with a National Dementia Lived Experience Panel, the Rethink Dementia campaign emphasises the importance of maintaining relationships with those living with dementia.

Research has shown that making this effort to stay in contact with individuals and include them in social activities can help alleviate symptoms of depression, agitation, sleep disturbance, anxiety and apathy that can often come with dementia.

Dr Tom Russ, an NHS Consultant Old Age Psychiatrist and Researcher at The University of Edinburgh, said, “Over the past 20 years, I’ve engaged with hundreds of people who have been diagnosed with dementia, and it’s often the case that those individuals will withdraw from social activities, which can negatively impact their overall wellbeing.

“If you know of a friend or relative who has been diagnosed with dementia, it’s really important to stay in touch and help your loved one to maintain their usual social activities, or even try something new together.

“The Rethink Dementia campaign is sharing such a crucial message around the importance of social connection and I hope it provides positive action steps for family and friends of those living with dementia.”

For more information around supporting someone with a dementia diagnosis, please visit NHSInform.scot/RethinkDementia.

National Playlist Day: Create the Soundtrack of Your Life

Today is #NationalPlaylistDay.

Playlists of personally meaningful music can improve the lives of those living with dementia, their families and carers.

What songs make up the soundtrack of your life?

Looking for inspiration on what music to add to the soundtrack of your life this #NationalPlaylistDay?

Have a read of the prompts below that can help you think about the songs that have soundtracked your personal story:

👩‍👧 Songs from your childhood

👯‍♀️ Songs that remind you of friends

😃 Songs that make you feel happy

💃Songs that you danced to at school discos

🙌 Songs that are linked to your faith

🏅 Songs that are associated with your sports team

📺 Songs from your favourite films and TV shows

Create your playlist today. http://nationalplaylistday.org

Rethink Dementia campaign launched

Supporting people to stay well for longer

A new campaign challenging people to Rethink Dementia has been launched by the Scottish Government in partnership with COSLA.

To help address the stigma around the illness, people are being encouraged to continue doing everyday activities with friends or relatives diagnosed with dementia.

Research shows that making this effort to include people in social activities can help them stay well for longer as well as alleviate symptoms such as depression, anxiety and apathy.

Cabinet Secretary for Health and Social Care Neil Gray said: “When a friend or relative is diagnosed with dementia it’s natural not to know what to do. It can be an upsetting and daunting time, but it’s important for all of us to play a supportive role in helping our friends and family.  

“One of the key elements in the Rethink Dementia campaign is asking us to think differently about a dementia diagnosis. There are many practical steps we can take to help the people closest to us to lead fulfilling lives and stay well for longer.” 

COSLA’s Health and Social Care Spokesperson Counsellor Paul Kelly said: “This new campaign is a clear call to us all to think differently about dementia and those with a diagnosis.

“It highlights very clearly the simple ways that we can support people with dementia to stay connected to their local communities.”

Dr Tom Russ, an NHS Consultant Old Age Psychiatrist and Researcher at The University of Edinburgh said: “Over the past 20 years I’ve engaged with hundreds of people who have been diagnosed with dementia, and often they will withdraw from social activities, which can have a negative impact on their overall wellbeing.

“For anyone with friends or relatives who have been diagnosed with dementia, it’s vital to stay in touch to help them maintain their usual social activities, or even try something new together.”

Dementia affects an estimated 90,000 people in Scotland, 3,000 of whom are under the age of 65. 

For more information on supporting someone with a dementia diagnosis, please visit: ReThink Dementia | NHS inform

You can view our campaign film here https://youtu.be/82cLVZaoskI

Old Mother Blackbird takes flight for singer songwriter Sophie Bancroft

Celebrated local singer songwriter Sophie Bancroft’s short film Old Mother Blackbird has recently been chosen as part of a dementia-responsive programme of short films, screening on Virgin Atlantic flights over the next six months.

Old Mother Blackbird, which will also be highlighted in Virgin’s onboard magazine Vera as a ‘Vera Loves’ highlighted film, is a story about maternal love, caring for your children as they grow up, and the emptiness often felt when they finally leave home.

It was first screened at the Women Over Fifty Film Festival (WOFFF) in 2023, and was inspired by a mother blackbird who nested in Sophie’s own garden in Pathhead, a village situated 12 miles south of Edinburgh, during lockdown.

The music and words are written and performed by Sophie with her duo Bancroft & Lyne, and her collage used to illustrate the story, is hand-made.

Sophie works as a solo artist, collaborator, and as part of duo Bancroft & Lyne with bass player and partner Tom Lyne. 

She has released nine albums to date and plans to release the song from Old Mother Blackbird as a track on the duo’s forthcoming album.

Sophie’s first short film (S)kin about a mother’s hands and the generational love between mothers, grandmothers, and their children, won best documentary short at the 8 & HalFilm Awards and was screened at the Women Over Fifty Film Festival – WOFFF in 2021 and Italian film festival Cinema D’Idea in 2022. 

Sophie’s creative work has often reflected her own personal story. Her current work is inspired by the perspectives of middle age. She has recently collaborated on creative ageing projects with her local choir and with arts organisation Deepness Dementia Media, who are based in the Isle of Lewis.

Deepness Dementia Media provide help for people with dementia to ‘live well’, become autonomous and get the most out of life, and Sophie is currently working with them as music director, songwriter and composer for Dementia: The Musical written by Ron Coleman, which will tour major theatres around Scotland this autumn.

Sophie said: “I am thrilled that my short film Old Mother Blackbird is part of this dementia-responsive programme.

“Inspired by an extraordinarily brave and loyal mother blackbird that set up nest in my garden in a wee village south of Edinburgh, Scotland, it is wonderful to see her universal story of maternal love and family taking flight across the world.”

Sophie Bancroft is a singer and songwriter with a unique blend of jazz and folk influences. She has released nine CDs to date including Songs which was listed as one of The Herald’s top 50 Scottish albums of 2015. 

Monday Nights, the most recent release from her duo Bancroft & Lyne was listed in Jazzviews top jazz albums of 2020.

Her music has been used on HBO’s award winning TV series Six Feet Under and recorded by top jazz vocalists including Liane Carroll with the Prague Philharmonic Orchestra.

In 2019 she was awarded a Masters with distinction in Creative Writing and more recently she has expanded her creative practice to include creative writing, photography and film-making.

Sophie also co-leads The Pathhead Choir, is a founder member of the award-winning Pathhead Music Collective, and of Jazz Forward, a new collective music organisation representing and showcasing some of the original jazz being written in Scotland.

Old Mother Blackbird is available to watch on YouTube and as part of Virgin’s inflight entertainment package from now until December 2024.

The film has also been made into a children’s book and a series of greeting cards which are available to order online.

www.sophiebancroft.co.uk

Lottery funding for Hearts & Minds’ Elderflower programme

Award-winning Edinburgh charity Hearts & Minds has today received an award of £15,360 from the National Lottery Community Fund Awards for All Scotland to enable the charity to develop their Elderflower Programme for people living with dementia in Alloa.

Sean Donnelly, CEO, Hearts & Minds commented: “We are delighted that our Elderflower programme has been awarded funding from the National Lottery.

“This crucial support will enable Hearts & Minds to create personalised interactions specifically designed for individuals living with dementia in Clackmannan.

“We understand the importance of fostering positive human connections for those affected by dementia, and our aim is to provide them with meaningful, engaging, and often uplifting experiences that significantly contribute to their well-being and overall quality of life.

“We extend our heartfelt gratitude to the National Lottery for this award, which will allow us to extend our reach and impact to even more individuals this year.”

The National Lottery Community Fund, Scotland Chair, Kate Still said: “Every day National Lottery funding is changing the lives of thousands of people in communities across Scotland for the better.

“This project delivered by Hearts & Minds Limited, is a great example of community activity in action, showing just what can be achieved when people come together for a common cause or to help others.

“National Lottery players can be proud to know that the money they raise is helping to support this vital work which is making a real difference to so many.”

Hearts & Minds would like to thank The National Lottery Community Fund, for this award made possible by National Lottery players.

The Elderflowers are professional performers selected for their empathy, compassion, respect, and playfulness and are trained in clowning techniques including improvisation, music, slapstick, celebrating mistakes and rhythm.

They are also trained how to use their clowning skills in healthcare environments for older people living with dementia and other associated cognitive difficulties, who might be feeling anxious, isolated, confused, or frustrated, have sensory decline, and a loss of confidence and self-esteem. 

The Elderflowers currently visit Findlay House, Edinburgh and Borders General Hospital and with this funding will return to Clackmannan.

Trailblazing AI adopted by Edinburgh care home

Pain monitoring technology helps gives residents a voice

TWO FAMILY-run Edinburgh care homes are at the leading-edge of artificial intelligence (AI) – having implemented new technology that assesses tiny changes in expressions to understand residents’ pain and comfort levels.

One of Scotland’s top rated care home groups, Elder Homes Ltd has adopted PainChek’s technology across its two care homes in Edinburgh to assist staff in assessing pain levels for its 90+ residents.

PainChek uses AI facial recognition to analyse facial expressions from a smart device’s camera. It detects pain indicators like grimaces and winces and guides caregivers through observing other pain behaviours like vocalisations and movements resulting in an overall pain score to help monitor the effectiveness of pain management over time.

The app aims to improve the quality of life for those with cognitive difficulties who may struggle to communicate their discomfort, such as people living with Alzheimer’s and dementia.

Residents and staff at Elder Homes have been using the app since July 2022, which has resulted in better pain detection and treatment, reduced reliance on pain medication as well as more accurate treatment plans.

Cheryl Henderson, Education and Dementia Coordinator at Elder Homes has been spearheading the implementation of PainChek, while ensuring relevant members of staff are trained to care for residents diagnosed with dementia.

Commenting on the success of PainChek, she said: “Treating our residents with dignity is one of our key aims. We want to ensure all residents feel at home, whilst receiving the highest standard of care.

“Using this technology, and other technologies across our homes has been extremely rewarding. We’re excited to see how the use of technology continues to develop and the benefits it can bring to care home residents across Scotland.”

The care home also utilises other innovative technologies including electronic medication system which assist in monitoring medication given to residents, and electronic charting.

PainChek is currently being used in 18 care homes across Scotland, as well as forming a pillar of the Care Inspectorate’s Quality Improvement Plan which sees a further 15 care homes trialling the tech.

PainChek’s Head of Business Development UK&I Tandeep Gill said: “Our latest figures reflect the value and impact of the PainChek technology in UK care homes and worldwide.

“Reaching over three million pain assessments is a real milestone for us – each one brings more objectivity and consistency to evaluating pain, whilst making a difference to care home residents and enhancing their quality of life.

“We’re delighted to see staff at Elder Homes leading the way in adopting PainChek and embracing innovation to improve pain assessment and deliver person-centered care.

“By achieving positive outcomes for care home residents and the care staff involved in the Care Inspectorate trial, we hope to gain the opportunity for a broader government-funded rollout across Scotland.”

Founded in Australia in 2016, PainChek is the world’s first regulatory cleared medical device for the assessment of pain, enabling best-practice pain management for people living with pain in any environment, from those who cannot reliably self-report their pain, to those who can, and for those whose ability to self-report their pain fluctuates.

Cluny Lodge was recently awarded top marks in a recent Care Inspectorate inspection for supporting its resident’s wellbeing.

The two Morningside care homes are currently home to 90 residents, who come from a range of backgrounds, all of which receive 24-hour care who according to the Care Inspectorate are receiving the best care possible.

Driven by a personal need for exceptional later in life care, Loren and Julie Hufstetler established the family-run Elder Homes in 1984. For almost 40 years, Elder Homes has provided individualised support and compassionate service to seniors requiring assistance with daily living.

To find out more about Elder Homes, please visit: 

https://www.carehomeedinburgh.co.uk/

Creating a National Care Service

Community engagement funding to ensure groups are heard

Third sector organisations are being awarded new funding to help ensure as many voices as possible are contributing to the design of the National Care Service.

The funding will facilitate contributions from minority ethnic communities, LGBTI people, children and young people and those with experience of homelessness or the justice system.

Organisations will each receive £5,000 to encourage the communities they work with to have their say on how future community healthcare and social work services should look.

Social Care Minister Maree Todd said: “As we build a National Care Service that best fits the needs of everyone in Scotland, we need to hear from people directly.

“The new National Care Service will set the standards and guidance to support the design and delivery of community healthcare and social work services locally.

“The complexities of getting this right should not be underestimated. People with experience of the current system, whether receiving health and care support or delivering it, are the experts. We need to hear those voices – and those of groups who are often overlooked.

“We know that minority ethnic communities, LGBTI people, children and young people and those with experience of homelessness or the justice system are under-represented in our co-design work to date. We also know that people affected by dementia are a key group we want to hear more from and we will benefit from partnering with an organisation with expertise in this area.

“I am confident the funding to support co-design activity with seldom heard communities will help us shape a system we can all benefit from and be proud of.”

The partner organisations are:

  • LGBT Health and Wellbeing
  • Minority Ethnic Carers of People Project (MECOPP)
  • The Simon Community
  • Scottish Association for the Care and Resettlement of offenders (SACRO) 
  • Alzheimer Scotland

Promotion bolsters dementia care at Cramond Residence 

New Head of Lifestyle to strengthen residents’ experiences at care home 

ONE of Scotland’s leading care facilities has announced the appointment of a new specialist that will further improve its high-quality dementia services.  

Elaine Vallance has been promoted to Head of Lifestyle at Cramond Residence, bringing more than six years of expert care knowledge to the home’s lifestyle team.  

Elaine, who joined Cramond Residence 15 months ago, will organise a wide range of activities designed to bring meaningful socialisation to residents – a major factor in treating dementia patients.  

She said: “I’m passionate about delivering the best possible quality of care to our residents during their golden years. 

“I love spending time with our residents, and I am lucky to now head up an incredible team who always give their best to ensure that the standard of care we deliver is second to none. 

“When you come away from an activity that residents have enjoyed and you see a smile on their faces, it’s hugely rewarding and motivating. I’m really excited and thankful to be given this opportunity and I am looking forward to working with the team to bring forward more fantastic activities for our residents.” 

Cramond Residence strives to ensure that those living with dementia live a fulfilled life. The home offers a dedicated dementia floor, specially designed for those living with the condition to allow them to live a richer and more satisfying life with specialist facilities and trained staff on hand to provide support and relief. 

Dementia training sits at the top of the care home’s agenda with 90% of their staff being provided with vital dementia training.  

Elaine added: “We have already had a series of fantastic events for residents such as a trip on the trams to Newhaven, as well as a sports day which was popular with the residents.  

“In the future I have plans to create a sensory room for our residents living with dementia, this will provide a stimulating environment with huge mental benefits. 

“I will continue channelling all my energies and passion into delivering what Cramond Residence is all about, delivering top quality care to those who stay with us.” 

Client Liaison Manager, Christian Daraio said: “Elaine has a wonderfully kind and nurturing personality which the residents love.  

“We are incredible lucky to have her on our team and I am really looking forward to seeing what fantastic opportunities she no doubt has in store for our residents in the future.” 

Cramond residence is a purpose-built care home which opened in October 2018. It combines luxury, five-star accommodation with outstanding clinical standards. 

Spread across three floors, Cramond Residence adopts a small group living philosophy. That means groups of eight rooms form distinct “houses”, where residents are encouraged to eat and socialise together.  

To find out more information on Cramond Residence, visit:

 https://cramondresidence.co.uk/ 

Heart of Newhaven: July News

It’s July: a year since we got the keys to the Heart, a year to celebrate!

Summer is well and truly with us, and of course summer often means there is less happening, as everyone takes advantage of the good weather and the school holidays. So things have gone a little quieter at the Heart too, but that doesn’t mean there’s no news at all.

We have splendid news on the childcare front.

Daddy Daycare Edinburgh are opening a new childcare service at the Heart in August. They are providing after-school care for Trinity and Victoria primary schools and will be providing holiday clubs for all school children starting in October.

They have an open afternoon on Tuesday 15th August so check out their website to find out more:

www.daddydaycareedinburgh.com or call 0131 5168876.

News from Restoration Forth

The Ecology Centre is running a seagrass seed survey on 8th July to investigate the reproductive state of the seagrass meadow on Burntisland Sands where participants can expect to further their seagrass knowledge and develop skills in ecological surveying. These events are limited to 12 people each, so register your space by visiting The Ecology Centre’s What’s On page.

Where: Burntisland (Beacon Leisure Centre) 11:10am – Registration: www.theecologycentre.org/whats-on

For those of you who have been involved in the project so far, there will be a creative social event at the Royal Botanic Gardens on Sunday 9th July. Come along and meet others who have been taking part and create some Restoration Forth artwork together.

Where: The Royal Botanic Gardens Edinburgh – Registration: Eventbrite

Contribute to Heart Events

We continually receive questions about what is happening at the Heart. Well, that may be one question that you can answer. Trustee Norma Johnston leads the community projects team and would like to hear from you. Get in touch with her and join her band of local volunteers who are brainstorming ideas and helping organise events. It’s your community hub, so have a say in what happens in it. Contact Norma at norma.johnston@heartofnewhaven.co.uk

Dementia-Friendly Tea & Blether

On Wednesday, 5th July we hosted a themed conversation over a cuppa to imagine and create the new Dementia Meeting Centre, set to open in The Heart.

Meeting Centres are local resources where people living with dementia, unpaid carers, and families can access friendly, community-based support designed around their needs. They provide a social space where people with dementia and their loved ones can meet others and participate in activities they enjoy, based on their interests.

The event was attended by a group of 12, including volunteers, HONC staff, people living with dementia, and family members. The chat focused on getting to know one another and interest was expressed in gardening, themed conversations with tea and cake, games like bingo, dominos, or walking football, music, dance, and arts activities.

We had some good laughs and enjoyed eating Lesley’s delicious, home-baked muffins. The suggestions from this will inform our next programme of dementia-friendly activities at The Heart. 

We will meet again on Wednesday, 26th July, from 2 to 4 pm. If you have just received a diagnosis of dementia or are waiting for one, if you are a family member or a friend of a person living with dementia and would like to join, please get in touch!

We are also accepting donations to help purchase the games and art materials that would allow us to run our future dementia-friendly social activities. For any donations, expressions of interest, or questions, contact valeria.Lembo@heartofnewhaven.co.uk

Thank You Bright Green Environmental Solutions!

The Heart of Newhaven Community is incredibly grateful to Keirin Burns from BGE Solutions for the donation of 12 brilliant new chairs. They not only cater to the different access requirements of our visitors who attend our community activities but they are beautiful. We have already received positive feedback from those who have tried them out, and they find them very comfortable.

We would also like to extend ourgratitude to Fenella Kerr, a member of the Dementia Meeting Centre Advisory Group of The Heart of Newhaven, for connecting us with BGE Solutions.

More info on BGE Solutions at: https://www.brightgreenenvironmentalsolutions.com/

Around the Heart

With all the hot, sunny weather, our volunteer gardeners have been busy watering all the plant containers scattered about the grounds.

Here’s volunteer Judy Gray tending to some of the pots and lovely planters created by members of the Men’s Shed. You can order a planter for yourselves if you contact Men’s Shed in the Creel Building.

De-Cluttering

It may be summer, but some of our partners have been spring-cleaning. Some of them, notably the Men’s Shed and the History of Education Centre, will be holding a table top “sale” in the autumn when they will be offering up the gleanings from their tidying, but they are keen to start de-cluttering now, so get in touch with either of them and take the opportunity to pick up some excess tools, planters and other objects, old school scientific glassware perhaps suitable for vases or craftwork, or even illustrated books, all at bargain donation rates.

Get Creative

If you’re looking for something creative to do over the summer, then get in touch with our bookbinder Cass, who is running several workshops here at the Heart in July and August.

Choose from several different workshops  – Bitesize Bookbinding: Exposed long stitch binding, Bitesize Bookbinding: Case binding, Botanical Bookbinding mini retreat, Bitesize Bookbinding: Japanese stab Binding and Screen Print & Bookbinding, a 2-day collaborative workshop with Lorna Brown of Ink on Mesh.

They’re coming up at the Heart on 25 July and 1, 5 & 8, and 22 and 23 August. Just follow the link: https://bookbindingwithcass.com/in-person-workshops/  or email Cass at bookbindingwithcass@gmail.com

Finally, the next Leith folk club event is coming up on Tuesday 18 July, with young country singer Barbara Nesbitt swinging by as part of her UK tour.

The doors open at 7.30 for an 8pmstart. Advance booking isn’t usually necessary but it’s a good idea to drop a DM on the Leith Folk Club Facebook page to make sure they save you a seat.

Enjoy the rest of the summer and save the date: the 9th September will be our second AGM. What a year it’s been!

WHAT’S ON AT THE HEART

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.”