30 April update
I hope this finds you and your family safe and well. We know many people are going through a very challenging time as a result of the immense pressures and gaps in social care services. This is particularly challenging for those of you who are waiting for an assessment or access to services. So much of this pressure will be falling on families and carers - please do get in touch with our local teams to find out ways that we might be able to help you at present. We will be using this year’s Dementia Awareness Week to really highlight these pressures and to bring forward some suggestions on how we believe this burden could and should be eased.
Meantime, we are pleased to tell you about some areas that are progressing well. For example, we were delighted to launch the ‘Sports & Exercise for Brain Health’ open online course earlier this month. The new course builds on the success of the ‘Understanding Brain Health’ course introduced last year and was developed in response to calls from current and former athletes wanting to know more about the latest evidence-based brain health knowledge and practice. It is also a fantastic way to reach out to those younger people engaged in grassroots sports across the country, helping them and their coaches understand brain health and how to protect themselves whilst at the same time enjoying participation in sports. This compliments the work our brain health team are developing for primary school children, which will really help improve future generations’ understanding.
It was fantastic to see so many people participating in the recent Glasgow Kiltwalk event and fundraising for Alzheimer Scotland. We are also delighted with the number of people who have signed up for our new national Tea & Blether campaign taking place during Dementia Awareness Week. The efforts our supporters go to in order to help people living with dementia and their families and carers is outstanding – a fine example of such tenacity is Harry Racionzer who cycled 90 miles on his exercise bike (a mile for each of his 90 years) to raise funds for Alzheimer Scotland. Harry took on the challenge in honour of his late wife Etta. Well done Harry and thank you so much.
28 February update
I hope this update finds you and your loved ones well.
I was deeply saddened this month at the passing of Henry Rankin, a friend and highly valued colleague of Alzheimer Scotland. Henry was a member of the Scottish Dementia Working Group (SDWG) for many years and chaired the group for 4 years, a role in which he excelled in. Henry campaigned tirelessly to raise awareness of dementia and was passionate about improving the lives of future generations. He was passionate about the Dementia Champions programme, and both he and his wife Anne felt it was so important to improve the experience people with dementia had while in hospital. Henry was always happy to share his stories with students, health and social care professionals and policy makers. He knew the value that the voice of people living with dementia had. It was both a pleasure and a privilege to have known and worked with Henry over the years and our thoughts are with his family and friends.
Many of our supporters will have been alarmed to read the Scottish Government’s “Excess deaths from all causes and dementia” report published in early February. The report raises many concerning issues, however first and foremost, our thoughts are with every person who passed away during this time and for their families who have been left to deal with such unimaginable loss and grief. You can read our full response to the report here. The findings from this report need a full debate and discussion as there are significant and substantial concerns that arise from it. We want to ensure this debate takes place and involves people with dementia and their families and carers. To this end, we will be holding engagement sessions to discuss the future of long term care and indeed who pays for it. We would welcome your participation and if you would like to share your thoughts or take part in a discussion, please email us via [email protected].
We were delighted to launch the ‘Time for You’ carers fund on 14 February, funded by the Scottish Government to help support unpaid carers of people with dementia living in Scotland. The fund will run for a period of 6 months, and we’re pleased to have already welcomed applications since it launched. Find out more about the fund here, and please share with anyone you think would find it beneficial.
Finally I’d like to say a thank you to all our supporters who are engaging in fundraising events and challenges – it is never lost on us how far people will go to help change the lives of people with dementia and their carers in Scotland – thank you.
31 January update
I hope this update finds you and your loved ones well and that 2022 will be better year for all of us.
I am pleased we are beginning to see some light at the end of the tunnel with the Omicron variant and now more able to look forward to this year with a sense of optimism. I know that for many people the festive period will have been very difficult, particularly for those of you who will have been grieving for lost loved ones or struggling to spend the festivities with those you love due to the restrictions. Our Action on Rights team were inundated with calls in the week leading up to Christmas regarding care home visits and thankfully the team were able to support some 37 families secure a visit on Christmas Day. As always, our Freephone Helpline volunteers ensured that through their commitment and dedication, they were there 24 hours a day for anyone needing support during this time, and indeed at all other times. Thank you to all our dedicated colleagues, volunteers and supporters who have helped us through this difficult period.
As we look forward in 2022, there are number of important developments and new campaigns that we will be taking forward. I am pleased to tell you that we have received funding of £540,000 from the Scottish Government to expand wellbeing support and services for unpaid carers who are looking after a family member with dementia. This will be used to increase local support groups and respite activities. It will also include a small grants scheme for creative short breaks, which we have previously provided, and it produced fantastic results. Colleagues are busy behind the scenes pulling together all the necessary processes to launch the scheme and plan the local activities - more news on this will follow soon.
I am also pleased to let you know that we are beginning to see the dedicated national funding for post diagnostic support filter down into local areas. This should mean that by April this year there will be a substantial increase in the number of Post Diagnostic Link Workers throughout Scotland. This is a major step in reducing the current high levels of waiting lists and waiting times for this vital support. Again, we will keep you updated on progress.
In the next few months we hope to see a return to in-person events. This will include the official opening of our new Dementia Resource Centre in Alloa, a fantastic new resource which has been made possible by the dedication of our local volunteers who raised over £90,000 to help us purchase and develop this Centre. A huge thanks to them and all our donors who made this possible. We will also be launching a new National Walking Football Network in March, hosted by our partners in North Lanarkshire Council at the impressive Ravenscraig Sports Complex and we are looking forward to some high profile ambassadors kicking this off for us.
We will continue to press on with our Fair Dementia Care campaign this year and alongside this we plan to have a particular focus on research within our public campaigns and engagement. There are some key dates and events that you might want to save the dates for now, these include the Scottish Dementia Research Consortium conference on 9th & 10th May, Dementia Awareness Week from 30th May to 5th June, and our annual national conference on the 21st September, World Alzheimer’s Day. I cannot tell you how much I am looking forward to seeing our colleagues, members, supporters and most importantly the people we support in person - it has been a long time.
As always, thank you for your continued and invaluable support.
21 December update
I hope this finds you, and your loved ones, safe and well. Clearly we are all deeply concerned about the implications of the COVID-19 variant, Omicron and the significant new measures and restrictions that may come back in to force. At present we are doing all that we can to maintain our frontline support services in as COVID safe and meaningful way as possible.
We have the benefit of 18 months experience of this pandemic, with a dedicated team of frontline workers who continued to deliver support to thousands of people across Scotland. We will call on that experience again over what could be another winter of restrictions, and you can find out about the ways we are offering support here. It is unequivocal that we must do all that we can to support the fight against COVID-19. This, however, must be balanced with the risks associated with frontline service reductions or closures. We cannot go through another period where families and carers are having to cope on their own.
We also cannot expect people with dementia living in care homes to be denied spending Christmas with their loved ones. We are hearing first-hand through our various frontline support services about visiting inconsistencies in some care homes which appear to be as a result of localised decisions contrary to the Open with Care guidance and the principles of Anne’s Law. The pain and trauma families have experienced due to a lack of meaningful contact with their loved ones is heartbreaking. Unlike last year, we have the added benefits of vaccinations, boosters and preventative testing regimes. This should enable people living in Scotland’s care homes to be afforded the same right to family connection as everyone else – and unless there is a direct advice from Public Health, families should be entitled to an essential visit.
If you are a family or friend of someone living in a care home in Scotland and require support with visiting access, please contact our Action on Rights team on [email protected].
This team can also be reached via our 24 hour Freephone Dementia Helpline on 0808 808 3000. If you - or someone you know – need support, please call us.
Thank you to everyone who has supported Alzheimer Scotland in 2021, and our current winter fundraising appeal has been met with many kind donations. Finally, thank you to all Alzheimer Scotland staff, volunteers and supporters who continue to give their all and an unwavering dedication to people with dementia and their families and carers in Scotland.
I wish you all a safe and peaceful festive season.
30 November update
I hope this finds you safe and well. I am sure this week’s news of the new COVID variant, Omicron, leaves many of us concerned, especially now we are in the winter months.
It is our intention to continue to deliver our essential frontline and face to face supports. This would include making no changes to our Day Services, Community Activities, Link Workers, Dementia Advisors and use of Dementia Resource Centres. Our frontline staff have done a remarkable job of remobilising these vital services and of maintaining an exceptionally high standard of COVID safe practices, so we believe that these practices will provide a good level of safe practice in order to continue this work. This clearly might change if we are advised to do so by the Scottish Government in the coming weeks.
We are acutely aware of the many pressures and experiences many people are still facing, and how stressful and disorientating the winter months can be for people living with dementia and their families are carers. We want to reassure you that we will remain here for you this winter with our 24 hour freephone Dementia Helpline, local staff and our Action on Rights team here to help. Full details here.
Our Annual General Meeting was held on 10 November. Like last year, this was a digital meeting which welcomed over 40 attendees. Thank you to everyone who took the time to attend and for their contributions. An overview of the AGM can be read here. We are delighted to welcome two new Trustees to our Board – Thea Laurie and Geoff Orry. Both Thea and Geoff bring invaluable lived experience to the Board, and are members of the National Dementia Carers Action Network and the Scottish Dementia Working Group respectively.
We have launched our winter fundraising appeal this week. Rather than simply showcase our services, we wanted to convey the essence of our support – less of the ‘what we do’ and
more of the ‘why we do it’. I would like to share my personal thanks to Iain Fraser and Danny and Catherine McDonald, who are front and centre of the ‘little moments of magic’ campaign. You can find out more about the appeal here. Thank you to everyone who has donated already. We simply could not provide the level of support we do without such dedicated supporters - thank you to each and every person who make it possible for us to support people with dementia and their families and carers.
28 October update
As always, I hope this month’s update finds you and your loved ones safe and well, particularly if you have recently received your COVID vaccine booster and flu jags.
I’m thrilled to be hearing great feedback from our frontline staff across our Dementia Resource Centres who are enjoying being able to once again deliver groups and outdoor activities, as well as the reopening of our day care service. We plan to develop an ongoing blended approach using the online platforms which have helped us remain connected to so many of the people we support over this pandemic, reaching corners of the country we’d otherwise be unable to do. But there is something quite remarkable about that face to face connection between our staff and those we support, something we often hear described as ‘magical’ – and we are pleased to be able to offer a range of services both online and in person.
We are committed to maintaining and developing our local presence and now have 22 Dementia Resources across Scotland, with the recently completed Centre in Alloa - a brilliant example of tremendous local fundraising. Thank you to everyone who supported that truly inspiring effort. We have also commenced a project to create a Dementia Resource Centre for people living in Edinburgh within our existing premises, and we’ll be delighted to welcome groups there in the forthcoming weeks. Within these same premises will be the flagship Brain Health Hub, an open access community resource for individuals to obtain advice and assessment on their brain health. Finally, I had the privilege of meeting with several young supporters with lived experience recently, and as a result we are developing plans to connect to younger people who are living with family members who have a diagnosis of dementia in order to fully understand their needs, and have some volunteers coming on board to support this. We will bring you updates on all of these developments in due course.
We are delighted the Scottish Government has recently announced an additional national investment into post diagnostic support. As I’m sure many of you reading this will attest, the importance of an early diagnosis and high quality, personalised post diagnostic support for people with dementia and their families cannot be emphasised enough. Alzheimer Scotland have been vigorously campaigning to ensure everyone who should receive this critical support is offered it, and despite Scotland leading the way with this essential support, we know that fewer than half of those people diagnosed have received it. This has been further exposed during the COVID-19 pandemic where diagnostic and post diagnostic services were severely disrupted for many. We hope this additional national funding means that everybody who needs it has access to this vital support, people like Sophie Hogg, who speaks so elegantly about the difference that early intervention and support made to her life.
I was deeply saddened this month at the passing of Archie Noone, a dear friend, valued colleague and stalwart of Alzheimer Scotland. Archie was a member of our Board of Trustees, Vice Convener of Alzheimer Scotland and former Chair of the Scottish Dementia Working Group (SDWG). Over the years, Archie campaigned passionately to improve the lives of people with dementia, raise awareness and challenge perceptions about dementia. Archie was a wonderful ambassador for Alzheimer Scotland and the SDWG and will be missed very much by many people, and our thoughts are with Archie’s family and friends.
October is drawing to a close this weekend and the clocks are changing – we know this can be particularly disorienting for some people with dementia, and there are some helpful tips on how to handle this on our website.
30 September update
I hope this finds you and your loved ones safe and well. I would like to firstly say a very big thank you to each and every one of you who took part in Scotland’s Memory Walk Weekend. From individuals, to groups of friends and families, corporate partners, people of all ages across the country – an incredible collective effort indeed. Donations are still coming in but I was humbled to learn the total raised so far has exceeded £100k. Thank you. We will continue to do all we can with our fundraised income to make sure nobody faces dementia alone.
Our Annual Conference took place on World Alzheimer’s Day, Tuesday 21 September. Thank you to all those who attended, presented, contributed and engaged on the day. We were very grateful to have the Minister for Mental Wellbeing and Social Care, Kevin Stewart, and National Clinical Director, Professor Jason Leitch, join us for our morning session ‘What Matters to You’. All sessions have been recorded and can be viewed here.
As part of my keynote speech, I highlighted our shared vision for transformation, which has underpinned Scotland’s national dementia strategies over the past 12 years. These seven key areas are both evidence-based and informed by people with lived experience, and are essential if those living with dementia, their families and carers are to have consistent access to the highest quality of person-centred support, when they need it, from diagnosis to end of life and in every setting.
It sets out an approach for the timely, skilled, and well-coordinated support throughout the illness. This is essential if we are to avoid the human, societal and financial cost of crisis driven care that too many people with dementia and the families and friends who care for them currently experience.
I also set out key recommendations to support this model. These are to:
1. Establish a dedicated Dementia Directorate with an agreed national vision of the seven key areas of transformation and redesign set out in the model
2. Continued investment in brain health and prevention
3. Increase funding and guarantee access to Post Diagnostic Support Link Workers
4. Develop and introduce the role of Dementia Practice Coordinators
5. Develop advanced dementia care and specialist teams
6. Develop a new model of innovative specialist dementia units
7. Continue to deliver Promoting Excellence, extend Dementia Champions, and sustain Dementia Nurse and Allied Health Professional Consultants.
We fully support the commitment to establish a National Care Service. These recommendations and model of transformation are entirely consistent with current national dementia policy and the values and aspirations of the National Care Service. However, people with dementia, their families and carers simply cannot wait several years for the improvements that we all hope the National Care Service will bring. This model of transformation and the accompanying recommendations provide the foundations for progress that can be made now in preparation for the National Care Service – you may be aware that the Scottish Government have a consultation running at present to hear what people living in Scotland think this should look like. In preparation for our own organisational response, we are holding a series of virtual engagement sessions and warmly welcome your input – more details are here.
A final thank you to all my colleagues at Alzheimer Scotland who supported and facilitated both the Memory Walk Weekend, our Annual Conference, and the series of follow up sessions which took place last week, and a thank you as always to everyone who continues to show their support.
31 August update
I hope you and your loved ones are safe and well. September is World Alzheimer’s Month, and our Annual Conference will take place on Tuesday 21 September, World Alzheimer’s Day itself. Like many other organisations, our 2020 conference was cancelled due to the pandemic, so we are thrilled to be able to deliver this year’s conference, albeit digitally.
We are very pleased to have the Minister for Mental Wellbeing and Social Care, Kevin Stewart MSP, join us for the morning session, alongside National Clinical Director, Professor Jason Leitch, who together will participate in a panel discussion around the issues on what matters most to people with lived experience, both now and in the future. We welcome all opportunities to ensure the voices of people with dementia, families, carers and our members are heard – and we encourage you to ask questions, share your stories, and attend the conference. We are working very closely with the Scottish Dementia Working Group and National Dementia Carers Action Network to ensure that lived experience drives both the conference programme and its digital delivery. For more information and to book your free place, click here.
The National Care Service consultation launched earlier this month, and our frontline staff across Scotland have been delivering local engagement sessions to spark discussions and facilitate feedback. The Scottish Government have since launched an easy read version of the consultation, and have extended the feedback deadline until 2 November 2021. As we have said before, the likelihood is that a National Care Service could be at least five years away from realisation. People with dementia and their families and carers simply don’t have time to wait, which is why we are especially keen for the Minister to hear at our conference what matters to you now, as well as in the future.
We welcome the recent announcement of the Public Inquiry into the COVID-19 pandemic. For our community, this is an opportunity to have your voice heard on what you think the Inquiry should focus on. The Public Inquiry needs to have a detailed understanding of the devastation the pandemic has caused. Scotland is rightly now considering in depth what has happened. For us, we want to make sure the Public Inquiry lens lifts up the rocks of what has been a catastrophic experience for people with dementia and their families and carers. Many lessons will be learned as we go through this inquiry, however, there is no doubt that people with dementia and their families need our support and an increased level of investment in high quality services right now. We can’t wait for either the conclusion of the Inquiry or the development of a new National Care Service before there is significant changes.
Throughout the pandemic, our local staff and volunteers across Scotland have done all they can to be there for people. We could not have done so without your continued help. I am consistently impressed by the number of people who take part in our annual Memory Walk, and I would like to thank everyone who has already signed up to this year’s event on 18-19 September. Support for our work comes in a variety of shapes and forms. This time last year we announced our intention to build the UK’s first Virtual Resource Centre, which will now be formally launched at our Annual Conference. For us to be able to offer this type of support and reach more people, wherever they are, whenever they need us, is quite an achievement – and it would never have been possible without your generosity. Thank you.
I do hope you are able to join us at our Annual Conference, and in the meantime, thank you for your continued support,
30 July update
I hope you have been safe and well during these summer months. Like so many organisations, we have continued to navigate our way through the COVID-19 pandemic and to support people with dementia and their families in alternative ways. We are beginning to now accelerate the reopening of our Dementia Resource Centres across Scotland, giving people the opportunity to connect with their community again and participate in the face-to-face activities and support that matter to them. We need to do this as safely as possible and in line with Public Health guidance, however our frontline staff and volunteers are working hard to make this possible and are delighted to once again open our doors.
We were pleased to have met with the new Minister for Mental Wellbeing and Social Care, Kevin Stewart, where we took the opportunity to share the issues we are seeing across Scotland around post diagnostic support and an overview of the aims of our Fair Dementia Care campaign. We also shared some of the challenges faced bringing national policy into local areas, and our commitment to ensuring the hidden impact of the coronavirus pandemic on people with dementia, and their families and carers, is brought to the forefront. Mr Stewart was understanding of the issues we presented, and we look forward to continuing these discussions.
As you may be aware, the Scottish Government have committed to establishing a new National Care Service in response to the Independent Review of Adult Social Care and are now due to embark on a consultation on the new National Care Service. This is arguably the biggest change in the delivery of our social care system in recent history. It is vitally important the voices and views of people with lived experience are heard, valued and included in this consultation and Alzheimer Scotland will do all we can to empower and facilitate this process. We will be sharing details on the consultation process once we have more information, and how we plan to support engagement on this. The likelihood is that a National Care Service could be at least 5 years away from realisation. People with dementia and their families and carers simply don’t have time to wait. This is why we are continuing to campaign for Scottish Government to establish a dedicated directorate with a significant and substantial core central budget to support local authorities to deliver consistent care to people with dementia across Scotland.
I would like to take this opportunity to thank each and every single person who continues to support our charity. We simply could not deliver the support we do without your help, from our 24-hour Freephone Dementia Helpline to our frontline Dementia Advisors, and a whole range of community support in-between. We are immensely proud of the support we have built over the years and the many different ways that we, and our supporters, raise funds. However, there are some fundraising tactics that we do not believe in, or take part in, and these include door-to-door fundraising in any shape of form. We have been dismayed at the number of recent reports of fraudulent fundraisers approaching people in their homes and you can read more about our position on this here.
It was an honour and a great privilege to see our friend and colleague, Archie Noone, receive a Lifetime Achievement Award this month. Archie is a strong dementia ambassador and has been raising awareness from the perspective of someone with lived experience across many platforms, including international conferences. Archie is Vice Conveyor of Alzheimer Scotland’s Board of Trustees and a long-standing member of the Scottish Dementia Working Group, providing expert advice to NHS Education for Scotland, Scottish Social Services Council and Promoting Excellence Team. Archie has also been extremely active and supportive of Scottish dementia research. Congratulations to Archie on this truly well-deserved award.
Thank you for your continued support, and please stay safe.
31 May update
I hope this finds you, and your loved ones, safe and well and benefitting from the continuing ease of lockdown restrictions. This week marks the start of our annual Dementia Awareness Week, an opportunity to really focus our messaging, and the theme for this year is 'Hidden voices, Hidden impact, Hidden cost', reflecting on the devastating impact, and true experience, of coronavirus on the dementia community.
People with dementia and their families have been significantly impacted by the Covid 19 pandemic, and the subsequent measures put in place to mitigate the spread of the virus. Almost every component of what could, and should, be a good system of personalised care and support for people with dementia and their families has been shattered. For well over a year, with the exception of residential forms of care, almost all direct forms of community support has been delivered exclusively by families themselves. This Dementia Awareness Week, Alzheimer Scotland pledges to ensure the hidden impact of the coronavirus pandemic on people with dementia, and their families and carers, is brought to the forefront and will work towards ensuring every person, in every area of Scotland, receives the highest level of care and support. You can read more about this in my Open Letter.
We invite our supporters to make their own pledge to support Dementia Awareness Week - everyone can make a difference , no matter how much or little time you can spare. From committing to learning a little bit more about dementia, to sharing your lived experience, every action counts.
This week is also National Volunteers' Week in Scotland, and we would like to take the opportunity to thank each and every person who gives their time to helping us make sure nobody faces dementia alone - I am truly humbled by their loyalty, dedication, compassion and tenacity.
Please keep safe and well.