Chief Executive update

Dear Supporters 

I hope this finds you and your loved ones safe and well.

This month marks five years since the start of the COVID-19 pandemic lockdown. The impact that lockdown had on the dementia community was huge. From the delays in getting dementia diagnoses, to the trauma experienced by those being unable to visit family and friends in care homes. The devastating effect on supports and services, and the resulting isolation that people felt during this time - we are still feeling this impact five years on. As we go forward, we must remember the lives that were lost during this time, and the pain that those losses caused to families and friends.  

The 10-16 March was Brain Awareness Week – an initiative aimed at raising awareness of brain health and encouraging support for brain sciences. Our Brain Health Scotland team were out and about delivering our STARS: My Amazing Brain Programme in primary schools and sharing the message that it’s ‘never too early, never too late’ to look after your brain health. We also sent out resource packs to over 2000 primary schools across Scotland. Thank you to everyone who took part in and helped out with these special sessions. You can find out more about our STARS programme here. 

As well as Brain Awareness Week, we also celebrated International Women’s Day on 8 March, sharing a blog, from NDCAN member Thea Laurie. Thea highlights the impact of dementia on women, both in terms of diagnosis and indeed as carers, and the need to speak more openly about women’s brain health. We at Alzheimer Scotland feel it is essential to draw national attention to the fact that dementia is the leading cause of death for women in Scotland, and has been since 2018, and more needs to be done to support women to address the risk factors that lead to incidences of dementia. We have been engaging with Scottish Government to explore opportunities to include women’s brain health and dementia as a priority in the next iteration of the Women’s Health Plan, and this important topic will be a focus area for Alzheimer Scotland and our prevention initiative, Brain Health Scotland, going forward. 

Our Shooting Stars Charity Football Match took place on Sunday 2 March at Falkirk Stadium. We were delighted to be joined by celebrities from the world of sport and entertainment. The Scotland team managed by Graeme Souness took on a Rest of the World team managed by Mixu Paatelainen. The game was excellent and extremely close finishing at 2-2 with Scotland going on to win on penalties. It was wonderful to see so many people there, and as well as being a fun day for families, it was a chance for us to promote the importance of brain health and raise vital funds. We’d like to say a huge thank you to everyone who contributed to and supported the event, and we hope this will be the first of many Shooting Stars matches.  

Best wishes

Henry Simmons 
Chief Executive   
 

Dear Supporters 

I hope this finds you and your loved ones safe and well.

We were disappointed by the news on 10 February that the Scottish Medicines Consortium (SMC) made the decision not to approve the Alzheimer’s disease treatment lecanemab for use on the NHS in Scotland. The decision was based on the cost of lecanemab in relation to the current evidence of the treatment’s clinical benefit. However, we think there is still hope that this treatment could be approved as we know that the pharmaceutical company are making a resubmission and we are optimistic that there will be a chance for more discussions and negotiations in these areas. We have also been invited to submit our views on another new treatment donanemab which will be reviewed by the SMC in the next few months. This is the first time in over 20 years that we have been in this position and we hope that these will be the first of many more new treatments coming forward from research for assessment and that soon we will see a successful disease modifying treatment available in the NHS. 

The final preparations are underway for our Shooting Stars charity football match which is being held at Falkirk Stadium on Sunday 2 March. This special event which has been pulled together for us by Stuart Taylor, Assistant Manager at Dundee FC, will see celebrities and famous names from football and sport come together for a ‘Scotland versus the Rest of the World’ game to raise vital funds to support dementia care and research. It will also be an excellent opportunity to emphasise the importance of brain health, prevention and risk reduction and why it is crucially important that everyone involved with sport follows Scotland’s high-quality guidance in these areas. Everyone volunteering and taking part in the day is helping send a message out to people living with dementia and their families that they are not on their own and that they care. Alongside this, it also promises to be a great day out for all the family. Tickets are still available, and you can find out more here. 

Brain Awareness Week is an annual global campaign aimed at raising awareness of brain health. This year, it takes place on 10-16 March and our campaign will be focusing on children’s brain health. Our Brain Health Scotland team will be promoting our My Amazing Brain programme by giving talks at schools, as well as encouraging parents to find out more about protecting their children’s (and their own) brain health. You can find out more about My Amazing Brain here.

Finally, Sunday 23 February was Helplines Awareness Day – a recognition of the invaluable services that helplines provide. Our 24 hour Freephone Dementia Helpline offers emotional support, a listening ear and signposting to other services. I would like to take this opportunity to thank all of our wonderful Helpline volunteers for their time, care and commitment. Thank you

Best wishes

Henry Simmons 
Chief Executive   
 

Dear Supporters

I hope this finds you and your loved ones safe and well.

In August 2024, the MHRA approved the Alzheimer’s disease treatment lecanemab for use in the UK, however the National Institute for Health and Care Excellence (NICE) made an interim decision that lecanemab is not cost-effective for the NHS in England and Wales. The decision on whether to make lecanemab available on the NHS in Scotland will be made by the Scottish Medicines Consortium (SMC). In early January 2025, we made our representation to the SMC as part of their review of lecanemab and we expect to hear their findings in due course. As always, we will keep you updated on the decision on lecanemab and indeed any other drug developments. 

We were saddened to hear the news about the recent deaths of footballing legends Denis Law and Jimmy Calderwood. Both Denis and Jimmy died from dementia, and it was a reminder to us all that the disease does not discriminate and can affect anyone. It’s currently estimated that around 90,000 people in Scotland are living with dementia, with that number predicted to increase by 50 per cent in the next 20 years. Dementia is also one of the leading causes of death in Scotland. 

I was asked by the Scottish Sun on Sunday to write an opinion-article on the work that Alzheimer Scotland is doing to support people with dementia, why we are calling for earlier diagnoses and better treatments, and why there needs to be more research carried out on the impact of playing football on brain health. You can read the full article here. 

Thank you to Aberdeen and Dunfermline Athletic who are donating £1 to Alzheimer Scotland from each ticket sold for their upcoming Scottish Cup match in recognition of Jimmy Calderwood. 

We have a wonderful opportunity to raise awareness about dementia and brain health coming up on Sunday 2 March. Our charity football match – Shooting Stars - is taking place in Falkirk Stadium and this fun event for all the family will see football legends and celebrities battle it out on the pitch to raise vital funds to support our work here at Alzheimer Scotland. You can find out more and get your tickets here.

We would like to say a huge thank you to everyone who supported our Wintering Well campaign. Your generous donations are vital in helping to fund our services such as our 24 hour Freephone Dementia Helpline and our network of Dementia Advisors. 

Finally, our events team has lined up an exciting range of fundraising challenges to take part in in 2025. You can find out more about how to get involved here. As always, thank you for all the support in helping us to make sure nobody faces dementia alone. 

Best wishes 

Henry Simmons
Chief Executive

Dear Supporters 

I hope this finds you and your loved ones safe and well.

Thank you to everyone who has already donated to our 2024 Winter Campaign. Inspired by the wonderful, nature-based activities at our innovative Outdoor Dementia Resource Centre at Badaguish, the theme for this year’s campaign is ‘Wintering Well’. We have also created a booklet of ‘top tips’ to help with some of the difficulties the winter months can bring. You can find out more about Wintering Well here. 

We want to reassure you that Alzheimer Scotland will be here for you this winter. Our 24 hour Freephone Dementia Helpline is available 365 days a year and can provide a listening ear, emotional support, and signposting to other services. Our Dementia Advisors are here to help with information, advice or advocacy relating to dementia and brain health, and our Centres, based across Scotland, offer a warm welcome and a range of engaging activities.

Thank you to everyone who has fundraised for Alzheimer Scotland this year or made a donation – your support is invaluable in helping us make sure nobody faces dementia alone.

Finally, thank you to all our staff, volunteers and supporters. Your passion, dedication and commitment to helping improve the lives of people with dementia and their families is truly remarkable.

I wish you all a safe and peaceful festive season.

Best wishes  

Henry Simmons
Chief Executive
 

Dear Supporters

I hope this find you and your loved ones safe and well.

Our Winter Campaign for 2024 launched on 1 December. This year, the focus is on ‘Wintering Well’ and how you can stay healthy and connected throughout the winter months while still enjoying the benefits of nature. The inspiration for this year’s campaign came from our Outdoor Dementia Resource Centre at Badaguish, near Aviemore. 

Our campaign strapline, ‘Warm hearts and healthy connections… wintering well, together’ sums up the importance of looking after ourselves this winter, and we have put together a booklet of useful tips for ‘Wintering Well’. You can find out more about our campaign and how you can support it here.

We know winter can be a challenging time. We want to reassure you that Alzheimer Scotland will remain here for you over these coming months between our local support from our Centres, our Dementia Advisors and our 24 hour Freephone Dementia Helpline. Find out more here. 

We were delighted to launch our 2023/24 Annual Review at our Annual General Meeting (AGM) on 15 November. The review showcases the innovative work and projects we have been involved in over the last 12 months. You can download your copy here. 

Finally, I would like to thank everyone who took the time to attend our AGM and the supporter event that was held afterwards. To get the opportunity to meet our supporters and fundraisers in person was truly humbling, and I would like to sincerely thank each and every one of you who have helped us make sure nobody faces dementia alone. 

Thank you

Best wishes

Henry Simmons 
Chief Executive   

Dear Supporters

I hope this find you and your loved ones safe and well.

You may have seen the recent news about the Alzheimer’s disease drug donanemab. Despite the Medicines and Healthcare products Regulatory Agency (MHRA) approving donanemab for use in the UK, an interim provisional decision by the National Institute for Health and Care Excellence (NICE) has deemed donanemab not cost-effective for the NHS. This means that the drug will only be available privately. This highly disappointing news comes just three months after another Alzheimer’s drug – lecanemab was subject to the same decision.  

It feels very much like people with dementia are once again being pushed to the back of the queue when it comes to NHS spending. With more and more dementia drugs in development, work must be done to put in place the systems and infrastructure needed to successfully roll out these treatments.  We very much hope that the Scottish Medicines Consortium will take a different approach and approve these drugs for use in the NHS in Scotland. You can read our full response to the donanemab announcement here. 

With the clocks changing, we are now heading once more towards the winter months. Our winter campaign this year will focus on the idea of ‘Wintering Well’ and how you can stay healthy and connected at this time of year. We will be bringing you more details of this year’s campaign in the coming weeks. 

Our Annual General Meeting (AGM) will be held on Friday 15 November at our Centre in Oxford Street, Glasgow, and I am looking forward to welcoming all Alzheimer Scotland Members who are able to attend on the day.  Our 2023/24 Annual Review will also be launched at the AGM and features highlights of our work from over the last 12 months.  Following on from the AGM we are holding a special Supporter Event. It is wonderful to get the chance to thank in person so many fundraisers who have made such an amazing contribution. I would like to take this opportunity to thank every one of our supporters for their time, passion and dedication. Thank you. 

Best wishes

Henry Simmons 
Chief Executive   

Dear Supporters

I hope this find you and your loved ones safe and well.

Our Annual Conference took place on 20 September at the Edinburgh International Conference Centre, and we were delighted to welcome almost 400 attendees on the day. The theme for the day was ‘Your voice, Your choice, Your future’ and our five conference sessions focused on some of the key issues affecting people with dementia, their carers and families.  As always, our conference was opened by members of our two Active Voice groups – the Scottish Dementia Working Group and the National Dementia Carers Action Network and the voice of lived experience was very much at the heart of the event. 

We had some fantastic speakers including our opening session keynote speaker, Scott Mitchell, Peoples Champion of the Dame Barbara Windsor Dementia Mission. Scott spoke about his life with his late wife Barbara, the impact that Alzheimer’s disease had on their lives, his campaigning work, and the commitment he has to the Mission. I’d like to thank Scott for his contribution to the day, and indeed all our speakers, exhibitors and attendees. If you were unable to attend, all the keynote presentations are available to watch on our website here. 

In last month’s update, I spoke about the Alzheimer’s disease drug lecanemab and the positive news that it had been approved by the MHRA (Medicines and Healthcare products Regulatory Agency) which was followed by the highly disappointing decision made by NICE (National Institute for Health and Care Excellence) that it would not be cost effective for NHS use in England and Wales. This means that only those who can afford to pay the estimated annual cost of £20,000 to buy lecanemab privately will benefit from this treatment.

A decision has yet to be made in Scotland (by the Scottish Medicines Consortium (SMC)) on whether lecanemab will be recommended for use by the NHS, but we believe this is a golden opportunity for Scotland to lead the way in dementia care and to realise the life-changing potential of lecanemab, and any new dementia drugs that may follow. We are urging the SMC to consider the wider benefits this new drug could bring in terms of overall social care costs and for individuals and families. We will keep you updated on any developments. 

Saturday 21 September was World Alzheimer’s Day, an opportunity to raise awareness of Alzheimer’s disease and other dementias. Our charity is named after Alois Alzheimer, the pioneering neuropathologist who first identified Alzheimer’s as a brain disease and in an article written for World Alzheimer’s Day, we shared our thoughts about how Alois has inspired our work. You can read this here.  

Finally, I would like to thank everyone who took part in our Memory Walks throughout September. Whether you joined us at one of our official events or you chose your own walk route, your support is invaluable in helping us make sure nobody faces dementia alone. 

Best wishes

Henry Simmons 
Chief Executive