Chief Executive update

31 August update

Dear Supporters

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

It has now been two months since our Stop the Cuts Campaign launched, and in that short time we have now surpassed our last petition target of 12,500 signatures. We currently have over 13,000 signatures and we will continue to have the petition on our website throughout September – which is World Alzheimer’s Month. Thank you to everyone who has already supported Stop the Cuts by signing the petition and adding your voice to the campaign. If you haven’t signed yet, you can do so here.

We were pleased to accept an invitation from the First Minister to attend a small roundtable discussion on advanced dementia on 19 August. This initial meeting was very productive and wide ranging, and it will hopefully  lead to a greater focus on this area within the government strategy as we go forward. It also provided the opportunity for us to update the government on our recently commissioned report ‘Exploring advanced dementia in Scotland’s care homes: prevalence and understanding’. This latest report builds on our existing work around advanced dementia – you can read more about this work here. We look forward to engaging further with the government on this issue and will keep you updated on the progress of this.

Final preparations are underway for our Annual Conference which will take place on Monday 22 September at the Edinburgh International Conference Centre (EICC). The theme this year is Every step: improving brain health, informing policy, influencing care and will feature the following sessions:

• Never too early, never too late – how brain health is changing conversations and changing lives
• The power of knowledge – how today’s research is shaping tomorrow’s dementia care

We will also be joined on the day by our keynote speaker, Sanjeev Kohli, who will be talking about his personal experience of his late dad having Alzheimer’s disease. Our conference is a great opportunity to hear updates from the dementia community, meet up with friends and browse our marketplace. Tickets are still available, and you can find out more here.

We are now halfway through our 2025 Memory Walk events. Thank you to everybody who joined us at our Dundee and Aberdeen walks – it is always so wonderful to see so many people come together and walk in memory of loved ones.  If you have signed up for our Glasgow and Edinburgh walks – we look forward to seeing you there.

Best wishes

Henry Simmons
Chief Executive

31 July update

Dear Supporters

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

Last month, we launched our Stop the Cuts Campaign, challenging the devastating cuts being made to health and social care services for people with dementia, their families and carers across Scotland. The response to the campaign has been remarkable, with over 9800 signatures on our petition. We have also been overwhelmed by the individual case studies we have received, telling a worryingly consistent story of people not being able to access support, being left on their own, having support reduced and being subjected to lengthy waiting lists.

We have written to MSPs and MPs, as well as local council leaders and COSLA, to highlight the distressing impact of these cuts on the dementia community. The Minister for Social Care and Mental Wellbeing and representatives from COSLA have agreed to meet with us to discuss the issues raised by our campaign – we will of course keep you updated on the outcome of this meeting.

Dementia requires a comprehensive, co-ordinated approach to care that addresses the needs of people at different stages of the condition. We believe people with dementia deserve the same priority in the health and social care system as people living with other major illnesses and conditions. We want to ensure that every person living with dementia is able to access timely and effective care throughout the progression of their condition, and that their families and carers are also supported during that time.

Our Dementia Care Pathway Guarantees outline the services and supports that should be available for people with dementia and their carers, and the standard of care that they should expect at each stage. We are urging the Scottish Government to introduce these guarantees to clearly define what care and support people living with dementia should expect to receive during the early, moderate and advanced stages of the condition, and to assume responsibility for delivering that level of care to everyone with a diagnosis. You can support our Stop the Cuts campaign here.

I’d like to thank everyone who took part in our Dundee Memory Walk at the end of June. With more Memory Walk events still to be held in Aberdeen, Glasgow and Edinburgh in the coming months there’s still time to sign up and take part. Your support is invaluable in helping us make sure nobody faces dementia alone.

Best wishes

Henry Simmons
Chief Executive

26 June update

Dear Supporters

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

Today we are launching our ‘Stop the cuts’ campaign.

Vital health and social care services supporting tens of thousands of people with dementia, their families and carers are quietly being earmarked for closure and severe reductions in some of the most extreme cuts ever seen. We are calling on local authorities and the Scottish Government to stop these cuts, protect dementia services by setting national standards of care and creating clear pathways of care for everyone living with dementia in Scotland.

Among the worst affected areas are care at home, respite and day care services, which provide lifeline support to people in a moderate to advanced stage of the condition. Post diagnostic support services are also under pressure in some areas, and some families are facing increased charges for many forms of community support. All of this puts pressure on family carers, while the lack of community support for people with dementia will accelerate their increased level of need – denying people the chance to live as well as they can for as long as they can. We believe every person with dementia in Scotland deserves:

• Access to quality, local support throughout every stage of their condition
• A clear, national care pathway, not a postcode lottery
• The same priority in the health system as people living with other major illnesses

Alzheimer Scotland has written to all MSPs, MPs and council leaders across the country, as well as to ministers and local government body COSLA calling for urgent action. We have also created a petition that we will be taking to the Scottish Government – you can help us stop the cuts and demand change by adding your voice to our campaign and signing our petition here. We will of course keep you updated on our campaign progress.

I was delighted to attend the opening of our second Outdoor Brain Health & Dementia Resource Centre at Lauriston Castle on Thursday 5 June. We have known about the importance of ‘green health’ for people with dementia for some time now, and our first Outdoor Centre in Badaguish, near Aviemore opened in April 2023. Since then, many people have enjoyed the benefits of nature and the great outdoors there. We were joined on the day by our special guest, dementia campaigner and husband of the late Dame Barbara Windsor, Scott Mitchell, and I’d like to thank Scott and everyone else who came along to the opening event.

Finally, thank you to everyone who supported this year’s Dementia Awareness Week. The theme of our ‘Every step’ campaign was the importance of friendship for people with dementia and carers. We are always so grateful to the people who selflessly share their inspiring stories with us and take the time to take part in our campaigns. Thank you also to everyone who held a Tea & Blether event during the week – your support is greatly appreciated.

Best wishes

Henry Simmons
Chief Executive

Dementia Awareness Week update

Dear Supporters

We are delighted to launch Dementia Awareness Week today. This annual campaign aims to raise awareness of dementia and help improve the lives of people with dementia, their families and carers. Our campaign theme this year is ‘Every step’ and focuses on the importance of friendship in the lives of people with dementia and carers, from diagnosis through to the more advanced stages of the condition.

Our campaign features videos and stories from some amazing people who have shared with us how important friendship has been to them and the difference it has made to their lives. I’d like to thank everyone who took the time to participate, your contributions are truly inspiring.

Thursday 5 June sees the opening of our second Outdoor Brain Health & Dementia Resource Centre which is located in the grounds of Lauriston Castle near Cramond. Our first Outdoor Centre at Badaguish in the Cairngorm National Park opened in 2023 and many people have benefited from the nature-based activities on offer there.

The Lauriston project is an innovative partnership between Alzheimer Scotland and the former Forget-Me-Not Trust who initially developed the garden, in collaboration with Edinburgh City Council. When Alzheimer Scotland first took ownership, the Lauriston lodge building required extensive renovation work, although the gardens were immaculately kept by the Forget Me Not Trust. The historical site has now been restored to its former glory, with dementia-friendly design throughout.

The Centre will provide a range of activities, including gardening and horticulture, relaxation and yoga, community cafes and Green Health programmes. We know that people living with dementia can often become socially isolated, or struggle to access the outdoors, but our Lauriston Centre will help to bring the benefits of nature directly to them.

Finally, I want to thank everyone who is hosting or taking part in our national Tea & Blether fundraiser event during Dementia Awareness Week, your support is simply invaluable in helping us fund vital services and make sure nobody faces dementia alone.

Best wishes

Henry Simmons
Chief Executive

30 April update

Dear Supporters

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

We were delighted to hear that the European Commission has decided to authorise Alzheimer’s disease treatment lecanemab. Although it is not yet approved in the UK, this decision is seen as a positive breakthrough and may influence future decisions by NICE and the Scottish Medicines Consortium. We are also expecting to hear in May if donanemab, also an Alzheimer’s disease treatment, will be approved for use in Scotland by the Scottish Medicines Consortium. We will of course keep you updated on this.

As I write this update, plans are well underway for this year’s Dementia Awareness Week (DAW) – our annual campaign that aims to raise awareness and help improve the lives of people living with dementia, their families and carers. This year, Dementia Awareness Week will take place between 2 – 8 June. Our theme for 2025 is ‘Every step’ and focuses on the important role that friendship plays in the lives of people with dementia and their carers, from diagnosis through to the more advanced stages. More details of our DAW campaign will be available on our website closer to the time.

Our Annual Conference is always a great opportunity for people to get together and hear what’s happening from across the dementia community. This year’s conference will be held on Monday 22 September at the Edinburgh International Conference Centre. Early bird tickets are now available – you can find out more here.

As a charity, we simply could not do all that we do without the dedication and determination of everyone who donates to our cause. We are launching three exciting fundraising campaigns this month. Our annual Tea & Blether event which runs across Dementia Awareness Week, our Morrisons campaign which runs from 2 – 8 June, and our annual Memory Walk which has four events scheduled this year. There are so many opportunities to get involved, whether through hosting your own Tea & Blether, volunteering at our bucket collections or walking in memory of a loved one, and we are so grateful for all the support we receive from our fundraisers and volunteers – thank you.

Best wishes

Henry Simmons
Chief Executive

31 March 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

28 February update

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.

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

30 January update

Dear Supporters

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