Chief Executive update

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   

Dear Supporters

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

You may have seen in the news last week that the UK’s medicines regulator, the MHRA, has approved a new treatment for Alzheimer’s disease called lecanemab, this approval covers the whole of the UK. Despite this positive step, the National Institute for Health and Care Excellence (NICE) has made an interim decision that lecanemab is not cost-effective for the NHS in England and Wales, meaning the treatment will only be available privately, which is a serious concern as it could in the long-term lead to a two tier approach to treatment. 

The decision to make this available on the NHS in Scotland will be made by the Scottish Medicines Consortium (SMC). We have already met with officials from the SMC and we are encouraged and reassured that we will have a fair and positive opportunity to participate in their assessment of lecanemab. We are in the process of planning local engagement sessions to help shape our response and seek your views on this treatment. 

The treatment, which is delivered intravenously, has shown promising results in clinical trials, it demonstrated a positive effect on reducing cognitive decline and in maintaining quality of life and works by reducing the level of amyloid in the brain – a protein thought to be a key cause factor in the disease process. Although lecanemab can only help a small number of people who are at the early stages of the disease, the positive impact that it could have on those people’s lives cannot be underestimated.

In early August, a Lancet Commission report identified two new modifiable risk factors for dementia and estimated that up to 45% of cases of dementia could be preventable. The two new risk factors are ‘high cholesterol’ and ‘vision loss’ and they join the existing list of 12 modifiable risk factors. These findings build on the vital work that our team at Brain Health Scotland do to inspire and empower people to protect their brain health and reduce the risk of diseases that lead to dementia.

It is so important that everybody has equal, and early, access to diagnostic services like our Brain Health Service in Aberdeen. The service, a multi-agency project between Scottish Government, NHS Grampian and Alzheimer Scotland, offers a dedicated space where people can find out about their personal risk of diseases that can lead to dementia. You can find out more about the work of Brain Health Scotland here.

As I write this, it is now less than a month until our Annual Conference. We have a fantastic range of speakers including Scott Mitchell, husband of the late Dame Barbara Windsor. Scott is the Peoples Champion for the Dame Barbara Windsor Dementia Mission and we are delighted he will be joining us on the day. You can find out more details of the programme for the day and how to get your ticket here. I look forward to seeing you there.

Thank you to everyone who has already signed up for Scotland’s Memory Walk 2024. It is a wonderful way to honour a loved one and your support is invaluable in helping us provide services such as our 24 hour Freephone Dementia Helpline and our National Dementia Advisor Service.

Best wishes

Henry Simmons 
Chief Executive   
 

Dear Supporters

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

Thank you to everyone who supported this year’s Dementia Awareness Week. The theme of our campaign this year was ‘your voice, your choice, your future’ and focused on the importance of good, person centred care, and people having choice and control around their care options. Thank you to Margaret, Catherine and Jean who all shared their experiences with us and for their fantastic contribution to the campaign. Thank you also to everyone who held a Tea & Blether event during the week – your support is greatly appreciated.

We recently published The Commission on the Future of Long Term Care in Scotland report.  The Commission was established in 2022 to consider alternative approaches to delivering more effective methods of long term care and support. Currently, there is a worrying lack of care options available for people living with the later stages of dementia. The report contains 16 key recommendations that we are calling on the Scottish Government to implement as a matter of urgency. We received a written response from Neil Gray, Cabinet Secretary for Health and Social Care on 12 June, welcoming the contribution of the Commission and its final report, stating that the Scottish Government are committed to ensuring all those living with dementia in Scotland and their carers get the care and support they need in a way that works for them. I will be meeting personally with Mr Gray on 18 September to discuss the report and recommendations in more detail and will keep you updated on the outcome of that meeting.

‘Your voice, your choice, your future’ will also be the theme of our Annual Conference this year. Held in the Edinburgh International Conference Centre on Friday 20 September, it is a wonderful opportunity to hear from a range of engaging speakers, network, connect and visit the thriving marketplace . As always, tickets are free for people with dementia and their carers - you can find out how to register here.

Finally, I want to thank everyone who has already signed up for Scotland’s Memory Walk. Taking place in September in Glasgow, Edinburgh, Inverness and Dundee, or indeed a route of your own choosing, it is a chance to celebrate a loved one while helping Alzheimer Scotland make sure nobody faces dementia alone.

Best wishes

Henry Simmons
Chief Executive 
 

Dear Supporters

We are delighted to launch our annual Dementia Awareness Week today, with the aim of raising awareness of dementia and helping improve the lives of people with dementia, their families and carers. Our theme this year is: Your voice, Your choice, Your future. Each person living with dementia has their own unique story, and their needs, preferences and aspirations are as diverse as they are. At Alzheimer Scotland, we advocate for a person-centred approach to all health and social care that enables people with dementia to live as well as they can for as long as they can. We believe that good person-centred care should give people the power and control to make choices that reflect who they are and what matters most to them - now and crucially in the future. 

However, it is clear to us that this is not always the case, especially when people’s needs change and they require a greater level of support. Too often at this stage people are being offered only one option, which is some form of residential care, something that we know many people would not choose. But due to the financial constraints, a lack of creative alternatives and a lack of a true desire to deliver meaningful person-centred care that reflects individual choice, that’s the only offer. This is not right, and we lack a positive and creative range of alternative options. This is why Alzheimer Scotland formed a Commission in late 2022 to consider these challenges and explore alternative approaches. 

Today sees the publication of Alzheimer Scotland’s Commission on The Future of Long Term Care in Scotland report and the 16 key recommendations which we are calling on the Scottish Government to implement as a matter of urgency. 

Within this report we highlight that there is no meaningful long term care plan for people with dementia, residential care has been developed through an open market approach and there is little strategic commissioning of services that reflect the hopes and desires of people living with dementia. The report also highlights our previous findings in the Fair Dementia Care Commission that for many people with advance dementia their care needs are unequivocally health care needs, indistinguishable from the needs of people with other forms of terminal illness, yet unlike these other conditions many people with advanced forms of dementia are faced with having to pay huge sums each week for this care, which should be free. This is simply not right, and we have been and will continue to do all that we can to bring an end to this inequality. 

We urge the Scottish Government to implement all of the recommendations and deliver fairness, equality and the best possible long term care to one of our most vulnerable communities in Scotland. You can read the full report here.

We hope you enjoy all the Dementia Awareness Week films and stories you’ll see on our website and social media channels this week. I would like to thank each of our wonderful contributors, Catherine, Margaret and Jean who all shared their time and experiences to shape the campaign.

Finally, I want to thank everyone who is taking part in our national Tea & Blether fundraiser, your support is simply invaluable in helping us make sure nobody faces dementia alone. 

Best wishes 

Henry Simmons
Chief Executive 
 

Dear Supporters

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

Each year, Dementia Awareness Week aims to raise awareness and help improve the lives of people living with dementia, their carers and families. This year, Dementia Awareness Week will take place between 27 May and 2 June. Our theme this year is 'Your voice, Your choice, Your future' and highlights the importance of person-centred care and the difference it can make to peoples’ lives.

No matter where or how you are receiving support, be it in the community, hospital or a residential facility it is vital that you are treated with respect and given the power and control to make choices that reflects who you are and what matters most to you.

Our Long Term Care Commission was established in 2022 to consider alternative approaches to delivering more effective methods of long term care and support. Chaired by former First Minister Henry McLeish and with members of our Active Voice groups adding the voice of personal experience, the Commission's report and key recommendations will be published during Dementia Awareness Week. The report will be available to read on our website.

Tickets are now available for our Annual Conference. The event will be held on Friday 20 September at the Edinburgh International Conference Centre and, as always, tickets are free for people with dementia and carers. It's a wonderful opportunity to get together and hear about new developments from the dementia community. You can find out more here.

Finally, thank you to all our supporters who continue to fundraise in inspiring ways, helping us to make sure nobody faces dementia alone. Our annual Tea & Blether event has now launched, and I’d like to thank everyone who has already registered – you can find out more about Tea & Blether here.

Best wishes

Henry Simmons
Chief Executive