30 September update
Dear Supporters
I hope this finds you and your loved ones safe and well.
I was delighted to welcome so many attendees at our recent Annual Conference in Edinburgh. With over 350 people at the event, it was a great opportunity to connect and network in person. If you were unable to attend, all the keynote presentations are available to watch on our website here, alongside recordings of our webinar series which took place across September.
The expertise and depth of understanding shown by each of our fantastic guest speakers, on such an interesting range of topics, was truly inspiring. Each of our three sessions offered a remarkable insight into the work being done to improve the lives of those living with dementia, their families, and carers. Some of the concepts covered in the Women’s Brain Health & Dementia session were hard to hear - but are very important to understand. We take this area of focus extremely seriously and, following the level of interest and conversation from this session, we are launching a Women’s Brain Health and Dementia Commission to explore these issues further to make a series of recommendations.
Only last week, we learned the latest dementia death statistics published by National Records of Scotland. Data shows that Alzheimer’s disease, and other dementias, continue to be among the leading causes of death for women in Scotland, and the total number of overall deaths has increased over the last year. We need sustained and increased investment in brain health and dementia research to reduce the number of people developing dementia in the future, and we need to ensure that those living with dementia now receive the highest quality of care.
On 21 September, Word Alzheimer’s Day, we launched our new National Dementia Advisor Service. This will provide responsive, high-quality information, advice and advocacy support relating to all aspects of brain health and dementia. The team of highly skilled Dementia Advisors are available to answer general enquiries, but also to help people work through more complex issues. More information and contact details can be found here.
Our National Dementia Advisor Service and our 24 hour Freephone Dementia Helpline are wholly funded by the generous donations and fundraising activities of our supporters. I’d also like to say a huge thank you to everyone who took part in Scotland’s Memory Walk on 15-17 September. It was an incredible effort indeed, and we were delighted to receive so many inspirational stories from our wonderful supporters who took part. Thank you.
Best wishes
Henry Simmons
Chief Executive
31 August update
Dear Supporters
I hope this finds you and your loved ones safe and well.
We are looking forward to hosting our Annual Conference on Friday 15 September and the opportunity to connect with members, colleagues and friends on the day. The theme this year is ‘Influencing positive change & progressive practice in dementia’ and we are delighted to bring three fantastic sessions to the main stage and a mix of both national and international experts and speakers. We will be exploring how innovation and progressive practice supports and improves the lives of people with dementia. Understanding the issues and challenges facing women in relation to women’s brain health and dementia is so vitally important, and we are grateful to have Dr Maria Teresa Ferretti join us, a neuroscientist and expert in Alzheimer’s disease and gender medicine. We will also look to the future and consider how today’s research, learning and developments are offering hope for tomorrow. There will be space for good discussions and panel questions following each of these sessions, as well as a thriving exhibitor space and networking opportunity. We are also pleased the Minister for Social Care, Mental Wellbeing and Sport is able to join us, and delighted as always to have members of our Active Voice networks - the Scottish Dementia Working Group and the National Dementia Carers Action Network play a central role in our Conference Programme.
As always, feedback from previous attendees and the voices of personal experience help us shape the content and the structure of the day. A two-week Conference Series will follow on from the main event, where we have a wide range of online webinars and sessions to attend. Tickets for the Annual Conference are still available here, and for those unable to make it on the day, the presentations will be recorded and available on our website during our Conference Series.
Our annual Memory Walk campaign will take place on 15-17 September, and as always, it’s your walk, your way. We are always so touched by the hundreds of supporters who come together to walk in memory and in honour of loved ones. Thank you to everyone planning to take part this year – your support is invaluable.
I do hope you are able to join us at our Annual Conference, and in the meantime, thank you for your continued support.
Best wishes
Henry Simmons
27 July update
Dear Supporters
I hope this finds you and your loved ones safe and well.
Alzheimer Scotland warmly welcomes the recent news of two potentially promising drugs to tackle Alzheimer’s disease. We are indebted to those who have participated in trials to support these new discoveries. Without those individuals being prepared to support and take part in research, this progress would be impossible. We also welcome the investment of the various pharmaceutical companies who are moving this research and associated trials forward. You can read our full statement here.
The new discoveries bring hope for the future, however we are extremely aware that for the many people currently living with dementia and indeed their families, this news will be difficult to hear given that these treatments will more than likely not be available for some time and may be targeted more towards those at the earlier or moderate disease stages.
Alzheimer Scotland is committed to supporting high quality research taking place in Scotland through the Scottish Dementia Research Consortium (SDRC) and through Join Dementia Research (JDR). We are confident that some of these new treatments could potentially be trialled in Scotland in the future. We would encourage anyone living with dementia to sign up to participate in research as going forward that may be the best opportunity to access new treatments.
We understand this news might be difficult or may leave you with some questions. If you are feeling overwhelmed or need someone to talk to, please call our 24 hour Freephone Dementia Helpline on 0808 808 3000. Our trained volunteers are available 7 days a week to provide support. We also have a network of Dementia Advisors across Scotland that can offer advice and support.
We are delighted to see so many of our supporters already signed up for this year’s Memory Walk weekend on 15-17 September. Our flagship fundraising event has always been so well supported, and is a great chance to get together with family and friends to raise vital funds for people with dementia and carers. You can sign up here, and thank you again to everyone who has done so already.
Best wishes
Henry Simmons
Chief Executive
29 June update
Dear Supporters
I hope this finds you and your loved ones safe and well.
Thank you to everyone who supported Dementia Awareness Week earlier on this month. The theme of our campaign this year was around challenging stigma, with a particular focus on those facing it earlier in life. Five remarkable people – Stuart, Sean, Ruth, Kevin and Maureen shared their experience of having younger onset dementia and I would like to thank them all for their time, honesty and willingness to tell their stories. We know their videos and blogs reached thousands of people across Scotland, helping raise awareness of younger onset dementia. Thank you to everyone who liked, shared and commented on the campaign, and thank you also to those of you who held a Tea & Blether event during June, we are delighted with this level of support.
Congratulations to our wonderful team at Brain Health Scotland for winning a Highly Commended award at the Scottish Charity Awards in the Campaign of the Year category. The award was for our schools programme ‘My Amazing Brain’ which aims to empower young people with the knowledge they need to protect themselves against future disease.
We were delighted to launch a new partnership with the Scottish Libraries & Information Council, the Digital Health & Care Innovation Centre and pathfinder libraries across Scotland. The partnership will establish vital dementia information hubs in over 120 community libraries throughout the country. You can read more about this here.
This month marks an amazing 10 years of the Dementia Dogs project. A collaboration between Alzheimer Scotland and Dogs for Good, the project has grown considerably over the last decade, establishing a range of dog support services including our assistance dogs, community dogs and family dog workshops.
Our Annual Conference will be held on Friday 15 September at the Edinburgh International Conference Centre (EICC). We are looking forward to an informative and engaging day, with the opportunity to hear from both people with personal experience and from professionals across the dementia community. As always, tickets for people with dementia and carers are free and you can find out how to get your ticket here.
As always, our 24 hour Freephone Dementia Helpline is here 7 days a week for emotional support, information or signposting. Please call on 0808 808 3000 or share this number with friends and family.
Best wishes
Henry Simmons
Chief Executive
29 May update - Dementia Awareness Week
Dear Supporters
I hope this find you and your loved ones safe and well.
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. This year, we are considering the stigma people with dementia continue to face, with a particular focus on those facing it earlier in life.
I would like to thank each of our wonderful contributors, Stuart, Sean, Ruth, Kevin and Maureen, who all shared their time, their stories and their experiences to help us shape our ‘one thing, not everything’ campaign. You will see their films and blogs on our website and across our social media channels this week, and we hope the wider public will develop a better understanding of dementia and the small things you can do to help people around you.
The needs of people facing dementia younger in life bring in different challenges. Younger people are more likely to be in work, have family responsibilities or be facing financial commitments. The emotional impact of a dementia diagnosis can be huge, particularly at a younger age, and a timely diagnosis means that people can start coming to terms with the illness, learn how to cope and begin to make decisions and plan for their future. With the right help and support we know people can live well with dementia, and that is why we are doing all that we can to ensure that high quality post diagnostic support is provided for every person throughout Scotland with no exceptions.
I would like to share an update on our Fair Dementia Care campaign, which seeks to end the inequalities faced by people living with advanced dementia who we believe are treated differently in our current system to those with other life limiting illnesses such as cancer. In June 2022, we wrote to Scottish Government Ministers clarifying our position and explaining that we believe that when a person with dementia progresses to the advanced dementia stage, they should be offered access to an appropriate assessment process that will determine if their needs are primarily health care needs – and if so, should be free. At present there is no mechanism for this, however we believe this is wrong and we provided a legal opinion that there is a duty on the NHS to provide this assessment and if an individual’s needs are deemed to be primarily health care, then the NHS should fund this - not the person. After some ongoing discussions and communication, Scottish Government legal officials have recently agreed in principle to our requested meeting comprising both legal teams, Alzheimer Scotland and relevant government officials. We will keep you updated on the progress of this.
Finally, I want to thank everyone who is taking part in our national Tea & Blether fundraiser, your support is simply invaluable.
Best wishes
Henry Simmons
Chief Executive
27 April update
Dear Supporters
I hope this finds you and your loved ones safe and well.
Our very first Outdoor Dementia Resource Centre officially opened on Friday 21 April, and we are immensely grateful to the National Lottery Heritage Fund for their support. This unique centre, based at Badaguish Outdoor Centre in Aviemore, offers a wide range of activities including nature walks, birdwatching and making and building. You can read more about the opening here. We know that spending time outdoors is proven to enhance mental, physical and social wellbeing. From allotment projects to gardening groups and local walks, our frontline teams do all they can to offer the therapeutic benefits of nature to people we support across Scotland.
I was delighted to attend the Scottish Dementia Research Consortium (SDRC) conference this week. The event celebrated the SDRC’s achievements over the last 10 years. Research gives us hope for a cure, and it is inspiring to hear from so many wonderful people making significant contributions to dementia research. You can also make your own contribution to research by signing up to Join Dementia Research (JDR). Anyone, with or without dementia, can register as a volunteer, supporting vital research studies across the nation. You can find out more here.
Dementia Awareness Week (DAW) is approaching, and as always, the aim of the campaign is to raise awareness of dementia and help improve the lives of people with dementia, their families and carers. This year, we will consider the stigma people with dementia continue to face, with a particular focus on those facing it earlier in life. We look forward to sharing our ‘One thing, not everything’ campaign with you on 29 May - 4 June. Each year, we are overwhelmed by the level of engagement we see across our social channels during the week and we’re sure many people in the dementia community will get behind the campaign. You can read more about DAW here.
Alzheimer Scotland’s popular Tea and Blether fundraiser will again launch this year during DAW, with individuals, groups, schools and workplaces hosting Tea & Blether events to support people living with dementia in Scotland. You can find out more and register here. I would like to thank everyone who has already registered this year, your support is invaluable and greatly appreciated.
Best wishes
Henry Simmons
Chief Executive
30 March update
Dear Supporters
I hope this finds you and your loved ones safe and well.
It is difficult to believe last week marked 3 years since our country went into a national lockdown. The stress and distress that the dementia community faced during this time was unimaginable - from being unable to visit loved ones in care homes, to the immense pressures on people with dementia, their carers and families exacerbated by the loss of key services and isolation. The scale of the burden and grief of those thousands of families who lost loved ones is impossible to imagine and we must never forget what they have been through and are trying to live with. We dealt first hand with the impact of this on so many people that we supported, these were the most difficult days we have ever experienced. There were both direct and indirect harms caused by the pandemic and the public health restrictions that were put in place to prevent the spread of the virus, and the existing gaps in our health and social care system meant that people were not prepared for the devastation that the pandemic inflicted on so many lives. Alzheimer Scotland has been invited to give evidence under Rule 8 of the Scottish COVID-19 Inquiry, which we are currently preparing for submission.
I was delighted to attend the recent Alzheimer Scotland Centre for Policy and Practice (ASCPP) 10 year celebration event. The work that has been done by our colleagues there over the last decade has been outstanding. The Centre is a collaborative partnership between University of the West of Scotland and Alzheimer Scotland and has made a remarkable contribution - not only has it transformed the number of nurses graduating at a higher skilled level of dementia practice, there has also been a revolution of our general healthcare system, with over 1000 people graduating from the Dementia Champions programme. The Centre has worked closely with both the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN) making sure that the voice of those with lived experience is at the heart their work and this was recognised by both groups receiving ‘Inspiring People Awards’ at the event. This award also went to Alzheimer Scotland’s Dementia Consultants for their leadership in practice and contributions to teaching – congratulations to all.
You can read more about the work of the ASCPP in their special 10 year celebration report and watch their fantastic celebration film here.
It was great to see so many of our supporters engage with our social media posts for Brain Awareness Week. We shared some case studies from younger people who talk about their experiences of caring for someone with dementia. Their close proximity to living with dementia has made them think about their own brain health and how aware they are now around managing the risk factors associated with the condition. We are grateful to Ross, Kaye and Connor for sharing their stories, which you can read in our news section here. You can find out more about your brain health and to take the ‘brain health quiz’ here.
As always, our 24 hour Freephone Dementia Helpline is here 7 days a week on 0808 808 3000.
Best wishes
Henry Simmons
28 February update
Dear Supporters
I hope this finds you well. We are delighted with the response to the recent relaunch of our Time for You carers fund. We have received over 300 applications for these grants in only two weeks – demonstrating the need for carers to have some form of respite, and time for themselves, whatever that looks like for them. Time For You is fully funded by Alzheimer Scotland through a significant investment of fundraised income. You can apply for the Time for You fund here.
We have a few dates to share with you this month. Brain Awareness Week will take place on 13-19 March, and the Scottish Dementia Research Consortium (SDRC) Annual Conference is on 25 & 26 April in Glasgow. Please also note our annual Dementia Awareness Week campaign on 29 May – 4 June and our Annual Conference on 15 September. Details of all our events, conferences and campaigns will be available on our website.
A debate is taking place in the Scottish Parliament this week ahead of the publication of the new dementia strategy. Alzheimer Scotland engaged with hundreds of people with lived experience as part of the Scottish Government’s consultation process, and indeed to shape our organisation’s response. If you missed this in December, here is a link to our report, which we have also shared with those MSPs taking part in Wednesday’s debate, which you can watch here.
As an ongoing update, we continue to make the case for Fair Dementia Care to be delivered and have recently written to Minister Kevin Stewart reiterating our opinion (informed by our legal team) that the current Hospital Based Complex Clinical Care guidance is flawed. We await a response to this recent letter, and will keep our supporters informed as we go forward.
Please remember our 24 hour Freephone Dementia Helpline is here 7 days a week on 0808 808 3000.
Best wishes
Henry Simmons
Chief Executive
31 January update
Dear Supporters
I hope this update finds you and your loved ones safe and well. Between the cost of living crisis and demands on health and social care services, we know this winter has been – and still is - very challenging for the people we support. Building on our Time For You initiative, Alzheimer Scotland created a Winter Essentials fund in November to provide an additional helping hand of support during these difficult months. Since then, we have issued some 1,099 grants – a third of which have gone to people with dementia and the remainder to family carers across Scotland. These small grants have been used to purchase warm clothing, cover fuel and travel costs, or as a contribution to energy bills. This level of demand for the fund is indicative of a time when people’s needs are so significant. The Winter Essentials fund will remain open for the forthcoming weeks, you can find out more here.
The 2022 Time For You fund came at a crucial time when the need for respite and self-care was becoming increasingly critical for many in a caring role. A Time For You panel, made up of people with lived experience and Alzheimer Scotland staff, was formed to assess applications. We saw some wonderful, creative applications, and the fund was used for short breaks, gardening and home improvements, physical health and wellbeing, home based hobbies, technology and respite cover. We were also able to connect people to support such as their local Dementia Advisor and signpost them to other services including our 24 hour Freephone Dementia Helpline. After awarding 1192 grants, the fund closed in July 2022. Time For You was originally funded by the Scottish Government. We are delighted to relaunch it this year, which will be fully funded by Alzheimer Scotland through a significant investment of fundraised income. Time For You will reopen on 14 February, and the new panel is looking forward to welcoming applications. Full details will be made available on our website.
This year will see the launch of a new Brain Health & Dementia Resource Centre in Perth. We are delighted to offer our support in another area in Scotland, making Perth the home of our 25th Centre. We’re here to make sure nobody faces dementia alone, and each of our Centres offer a range of support services and therapeutic activities – you can find out more about your local area here, or alternatively call our Helpline for more information on the ways we can support you.
A huge thank you to all our supporters who took part in our 90k challenge in January – it has been wonderful to see the variety of activities and efforts you have made in order to complete the challenge and raise funds for Alzheimer Scotland. It is thanks to all our supporters, past and present, that we are able to make investments into initiatives and services such as Time for You, our Centres and our 24 hour Freephone Dementia Helpline, so I’d like to close by saying thank you for all you do to help us make sure nobody faces dementia alone.
Best wishes
Henry Simmons
Chief Executive