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.
29 April update
I hope this update finds you safe and well, and you’re all beginning to enjoy the benefits of the recently relaxed restrictions.
I wanted to focus this month’s update on our Fair Dementia Care campaign which was, and remains, one of the most significant campaigns in Alzheimer Scotland’s history. You can read more about the background to the campaign here.
People with advanced dementia, and their families, are on the receiving end of substantial inequalities; something the pandemic has only served to highlight. For many people with dementia, and their families, the decision to move to a care home is one of the most difficult decisions that will ever be made. On top of having to make this decision the processes, including a financial assessment, are often incredibly complex and variable.
There are apparent differences in the experience of someone with advanced dementia compared to someone with another life-limiting disease, such as cancer. It is simply not fair that people with advanced dementia are having to pay for their care, because their needs are not recognised as health care needs. As Chief Executive of Scotland’s leading dementia charity, I have never been surer that we must do all we can to end this inequity.
During the Scottish Parliamentary Election campaign, we’ve been asking our members and supporters to contact their candidates and ask them to pledge a commitment to deliver Fair Dementia Care for people with advanced dementia. We are immensely grateful to everyone who took the time to do this, and in turn to those candidates who committed to ensuring that every person with advanced dementia, living in a care home, has an individual assessment of their health and nursing care needs, and to supporting an increase in Free Personal and Nursing Care payments to a level which is equal to the actual cost of the care people with advanced dementia need. We also welcome the commitments set out across some of the Party manifestos.
We know our pledge asks – albeit critical – will not bring an end to all of the inequities people with advanced dementia are facing. Our frontline staff and volunteers frequently hear about the disparities between the care people with advanced dementia face in comparison to people with other progressive and life-limiting illnesses. We will not rest until there is a Scotland where dementia care is truly fair.
We fully endorsed the recommendation in the Independent Review of Adult Social Care around establishing a National Care Service. We believe this to be a progressive step forward, and Alzheimer Scotland’s campaigning focus over the forthcoming months will be to develop our understanding of what this should, and could, look like for people with dementia and their families and carers.
Thank you to each and every individual who has backed our Fair Dementia Care campaign so far. Your support is invaluable. As always, if you need any information or emotional support please contact our 24 hour Freephone Dementia Helpline on 0808 808 3000.
25 March update
I hope you are all safe and healthy. Tuesday 23 March signified one year since the UK went in to its first lockdown and, alongside the rest of the country, Alzheimer Scotland marked the National Day of Reflection with a minute’s silence to honour those who lost their lives as a result of the pandemic. As I’ve written before, the impact on the dementia community has been devastating, and the families of those who lost a loved one over the last year are never far from our thoughts. We must also reiterate just how grateful we are to every frontline worker who has consistently gone above and beyond the call of duty. They are remarkable, and we are truly indebted to each of them.
Whilst many of us would not have thought we would still be in lockdown a year later, I am pleased to be writing to you with a degree of hope and optimism after the most recent First Minister’s update, where she outlined a steady plan out of lockdown. Whilst we still have some way to go, it does feel that we can begin to look forward, both with this route map and the continued success of the vaccination programme. The most recent news that unpaid carers are entitled to self-register for the vaccination was a really positive step; we have regularly heard of the frustrations’ carers have felt being unable to access the vaccination, so this was welcome news. You can self-register here.
Last month, we promised we would update you on the re-opening of our supports. Since then we have received approval to re-commence several of our small-scale day services. We were delighted to see people living with dementia returning to the Dundee and Falkirk day care services during March. Following further agreements, the Mid Lothian day service and both day services in Glasgow will re-open later in March, and the first week of April. We anticipate further agreements will follow, to ensure people get the support they so desperately need. Work is also ongoing to ensure face to face visits with our Link Workers and Dementia Advisors recommence as soon as possible and all of our online support, telephone support and essential wellbeing visits will continue to ensure people remain supported during the transition back to face to face support.
It was great to see our Action on Rights team, funded by Scottish Government, launched at the beginning of March. The team are there for the families and loved ones of anyone living in a care home (not just those with dementia) to help facilitate meaningful visits, explain the Open with Care guidance and offer emotional and practical support to families and friends of people living in care homes who are experiencing high levels of anxiety and trauma as a result of the lack of meaningful contact. Since the service’s launch, the team have dealt with many complex enquiries. The majority of the people getting in touch have experienced emotional distress from the lack of meaningful visits, and there has been a common theme in the variances of care homes implementing the new guidance and the communication being received. In these instances, the team have been helping people to confidently understand the current guidance to help them have positive conversations with the care home, as well as providing emotional support and signposting on to other available support,
This month we also recruited two counsellors to form our National Dementia Counselling Service and one dedicated post for younger persons. We are absolutely clear that this will be a vital level of increased support for many people who have experienced such significant levels of loss and grief and have had to bear an inordinate level of stress and distress as a result of the pandemic. Whilst some people will have support mechanisms in place, others may not, and the Counselling Service will be here for you if you need it. If you think this would be of benefit to you, please get in touch with your local Dementia Advisor or local service.
As some of you will know, in January 2019 Alzheimer Scotland launched our Fair Dementia Care campaign to end the inequities faced by people with advanced dementia and their families. It was, and remains, one of the most significant campaigns that we have ever undertaken. Since then, over 18,000 of you have signed up to support Fair Dementia Care which is just wonderful – thank you. We’re in the process of launching the next phase of our campaign ahead of the 2021 Scottish Elections, and we’re asking candidates from all political parties to pledge their support by committing to:
- Ensuring that every person with advanced dementia, living in a care home, has an individual assessment of their health and nursing care needs.
- Support an increase in Free Personal and Nursing Care payments to a level which is equal to the actual cost of the care people with advanced dementia need.
If you would like to help support this pledge, please write to/email your local candidate and ask them to support our campaign. All details on how to do so are here. People with advanced dementia need, and deserve, to be treated equally, and you can help to make a difference.
I have never been prouder of all of our staff and volunteers in Alzheimer Scotland for the way they have continued to adapt and innovate over the last year. Whilst it has been an immense challenge, I am hopeful we are at the beginning of more positive times and I strongly believe that, between our existing and new services, the support we offer will continue to make a direct difference to the thousands of people living with a dementia diagnosis, their carers and families. As always, if you need information or emotional support, our Freephone Dementia Helpline is here for you 24 hours a day, 7 days a week (0808 808 3000).
24 February update
I hope this finds you, and your loved ones, safe and well. Whilst Scotland remains in lockdown, there have been some welcome developments since my last update. The continuing success of the vaccine roll-out is providing a ray of light and we must say a huge thank you to the dedicated teams across the country who are working tirelessly to deliver the vaccines as quickly as possible. It is a relief to hear of the falling death rates in care homes reported last week. The impact on Scotland’s care homes remains deeply troubling and our thoughts remain with the families and friends who have lost someone close to them. All of our local teams and Helpline volunteers have done their best to support many people through this devastating time and for many months now we have been working hard to secure the extra levels of support outlined below:
• As of 24th February our new Action on Rights team funded by the Scottish Government, will become operational. The Action on Rights team will offer emotional and practical support to families and friends of people living in care homes and who are experiencing high levels of anxiety and trauma as a result of the lack of meaningful contact. This service is not solely for people with dementia. If you have a family member or friend living in a care home, irrespective of their health conditions, you can contact our Action on Rights team. Find out more here.
• Many people will experience significant stress and trauma for many months to come, as a result of the pandemic. In recognition of this, we are in the process of recruiting experienced and qualified counsellors to become part of our new National Dementia Counselling Service, which will provide professional counselling for people with dementia and for families and carers of people living with dementia who are adversely affected by the COVID-19 pandemic. Both the Action on Rights team and the National Dementia Counselling Service will work alongside our 24 hour Freephone Dementia Helpline (0808 808 3000).
• In line with the new Route Map out of lockdown, we are currently progressing with plans and negotiations for the safe reopening of our face to face support in the community and in our Dementia Resource Centres. All of our frontline staff have been offered the vaccine, as will soon be the case for the majority of people we support. We are therefore seeking approval to commence our small-scale day services from March, and from April onwards we aim to reinstate face to face visits with our Link Workers and Dementia Advisors. All being well, we hope that small scale community groups and activities can commence in May and June. We look forward to bringing you an update on these plans next month. In the meantime, we will continue with all of our online support, telephone support and essential wellbeing visits. We are aware that some people might not yet have received their vaccination or might be finding it difficult to get to their local centre. Please don’t hesitate to get in touch with us if this is a problem for you and we will do our best to help support you with this.
The Independent Review of Adult Social Care report, led by Derek Feeley, was published earlier this month. The report has clearly been informed by people who have experiences of the social care system and we are pleased that people with dementia, families and carers were given the opportunity to contribute. Whilst we appreciate there are differing points of views, and there are many finer details which need agreed, we fully subscribe to the recommendations around a National Care Service. We were pleased to note the Cabinet Secretary also endorsed this on behalf of the Scottish Government during a debate in Parliament. We are delighted to see the recommendation to end non-residential social care charges and to tackle the inequality that we have exposed in charges for people with dementia living in residential care by increasing the levels of Free Personal and Nursing Care.
Meantime, the Scottish Government have proposed an above-inflation increase of 7.5% in the Free Personal and Nursing Care payments which are paid towards the costs of those living in care homes. The proposed change should mean that from 1 April 2021, many people living in a care home will see an increase in the Free Personal Care and Nursing Care payments they are entitled to. This news is warmly welcomed and brings us one step closer to achieving Fair Dementia Care. It demonstrates that, with political will, our proposal to increase Free Personal and Nursing Care payments to a level that reflects the actual cost of care can help end this inequality and that this can be done quickly within the existing legal framework.
As many of you will be aware, we have campaigned for two years to ensure people with advanced dementia have equality of access to the health care they need, and that the health care they receive is free at the point of delivery, on a par with people who are living with other progressive and terminal illnesses. The Independent Review of Adult Social Care report recommendations, and this recent increase proposal, are clearly positive outcomes for Fair Dementia Care. But people with advanced dementia simply don’t have time to wait for these to come to fruition. They need and deserve action now. This is why the Fair Dementia Care pledge is our campaign for the 2021 Scottish Elections, and we will bring you more details on that shortly.
As always, if you need information or emotional support, our Freephone Dementia Helpline is here for you 24 hours a day, 7 days a week (0808 808 3000). In the meantime, please keep safe.
8 January update
I would like to extend my warmest wishes as we begin 2021. I’m sure the majority of us welcomed in a new year with mixed emotions. On one hand, we have the continued rollout of the coronavirus vaccination across Scotland which is a much-needed glimmer of hope, whilst at same time we face a new level of lockdown throughout the country.
The impact of lockdown measures on our community is immense and often hidden as we evidenced in our report COVID19: the hidden impact. Faced with the scale of the increasing rates of infection it is clear that we all need to support and work within these new public health measures until the vaccination takes effect. At the same time, we will be doing all that we can to mitigate the impact. Since the last lockdown we have learned a lot and we have developed a number of new ways of supporting people living with dementia, their families and carers and we now have an extremely strong platform of support in place.
This includes being able to support people with dementia and their families and carers and continuing to provide therapeutic interventions, through face to face video calls, telephone support calls, online groups and small-scale wellbeing visits for those individuals who have significant needs. Our Dementia Link Workers are still able to provide an online, digital approach to post diagnostic support and continue to work with new referrals as best they can using these formats.
We understand that not everyone has access to technology, which is why we have been seeking to ensure as many as people as possible have the devices they need to access our digital support. To this end we are delighted to have taken stock of an additional 200 iPads. These have been provided through the Connecting Scotland initiative and this brings our current total to 400 devices that we will be able to give to people through our locality staff.
However, we know that technology doesn’t work for everyone and that’s why we’ll never stop our telephone support and, where possible and necessary, direct one-to-one support.
Sadly, these new measures could again have a profound impact on people living in care homes and their families. We are reassured that the people living in care homes and care home staff have been prioritised to receive the vaccination. This, alongside new testing methods, had given us great hope that people could soon start to visit their loved ones, however the challenges of the new strain of the virus and measures look like further delaying this for many people.
There can be nothing more difficult and heart-breaking for those families who are in this position. We know and commend the work of many of our care homes who had made great strides in providing visits. We also know some others have struggled to achieve this for a variety of different reasons. This is why we have consistently called for every family member going through this to have a dedicated contact person. We take a significant number of calls from people who are in immeasurable pain because they can’t visit their loved one, and we also have contact with people who are frightened by their interpretation of the potential risks from visits. We accept that there is no easy answer or one single solution that will overcome these challenges and we are not experts in infection control or pandemic management. But what we do know and understand is that, at the heart of this, there are thousands of people who need support, help and time to understand & come to terms with all of the guidance. They also need direct support to help make visits possible when there are avoidable delays. We have called many times for this dedicated support to be provided and sadly it has not yet been agreed to. In the meantime, I want to reassure you that our Dementia Helpline, network of local Dementia Advisors and support staff stand ready to help you, so please don’t hesitate to get in touch at anytime 24 hours a day.
As well as the pandemic, the winter weather and treacherous conditions of our local paths, the changing nature of our community infrastructures and opportunities to connect are all leading to potential isolation and loneliness for many people. Please don’t go through this on your own, pick up the phone to us and although we might not be able to see you face to face, we can help keep in touch and if needed link you in to other support. I would also encourage our members and supporters to pass on our Helpline number (0808 808 3000) and local contact details to anyone you think might benefit and help us make sure no on goes through this on their own.
18 December update
In recent weeks we have warmly welcomed the good news about the effective coronavirus vaccination, which brings a much-needed ray of hope of there being an end in sight to the dark days we have been living through this year. However, it is with a very heavy heart that I look back on 2020 and the immeasurable, and at times unbearable, impact it has had on people living with dementia and their families throughout Scotland. It has been so difficult for so many people and I am very proud of the way that our staff and volunteers responded to this challenge. They adapted quickly to the limitations and restrictions placed on us and reshaped their local service and support in order to be there for as many people as we could. We have been desperately eager to get all of our services re-opened and to get as much extra support out in our communities as possible, but we simply have not been allowed to. So, we have had to build a blended approach of online, telephone and where able to, wellbeing visits. I truly hope that their efforts, combined with our invaluable 24 hour Freephone Dementia Helpline, have made some difference in helping people through this time.
I am pleased to share news that we have now been given approval to provide small scale day services in Glasgow and West Lothian, alongside our Dundee Dementia Resource Centre. Whilst offering a smaller service, the people attending and their families have told us the difference this has made and, although the Centres look and feel different, the sense of normality and connectivity has remained the same. We really hope that this will continue and will be accelerated as a result of the vaccination.
I also want to share some of the work we have been doing behind the scenes to help influence and shape the national dementia policy response to the pandemic. As well as extensively engaging with our colleagues at Scottish Government, we have been undertaking detailed research on the impact of the pandemic and produced a report - COVID-19: the hidden impact. We recently presented this report to both the Scottish Government and COSLA and we believe it has been an important contribution in helping shape the national approach moving forward. We are continuing to work in a positive way with our statutory partners to take forward our recommendations which you can read in the report here. Alongside this we welcomed the opportunity to contribute to the National Dementia Recovery Plan and used the report to influence this. The plan explains how Scottish Government will work with others to support people with dementia and their families access the right care, treatment and support at the right time during and after the coronavirus pandemic. We consulted with our frontline staff, Helpline volunteers and over 150 people with dementia and carers, and fed back their opinions, views and lived experiences to Scottish Government. The Transition Plan should be made publicly available in the coming week and you can read our collated feedback here.
In line with this and in direct response to us highlighting the level of stress, distress and trauma that our community has gone through I would like to let you know that we are in the process of finalising an agreement with Scottish Government to establish a counselling service for those most affected by this. The service will be funded by Scottish Government and we hope to have it in place early in the New Year. We are also still discussing with the Scottish Government on how best to support family carers of people living in Care Homes and as yet our call for a named contact has not come to fruition. Our intention therefore is to keep the discussion ongoing and in the short term establish our own small internal project team who will lead on supporting people’s rights to visit relatives, as well as supporting the many people who contact us with other rights-based issues, such as paying for care.
As you know the issue of paying for care has been at the heart of our campaigning work in the form of the Fair Dementia Care campaign. We are going to build on this campaign, and over the coming weeks we will be calling for the financial support that people with advanced dementia receive to be based on their individual needs instead of a standard minimum level contribution. This is a simple ask with a straightforward solution and it is within reach. This ask will be our pledge for the 2021 Scottish Elections and will be publicly communicating about the campaign on a regular basis.
I realise that this may be a challenging festive season for many people and, during this time, we will be running over 40 online community groups and activities for the people we support and their families that anyone from across Scotland can participate in. And as always, our dedicated volunteers will be there for you 24 hours a day throughout this time on our Freephone Dementia Helpline. You can call them on 0808 808 3000.
2020 has been the most challenging year that anyone could have imagined, in fact there are still many challenges that we face in fully overcoming the impact of this pandemic. I want to personally thank every person who has stood beside us in rising to this challenge - all of our supporters, funders, partners and most importantly the people who place their trust in us to help support them and advocate on their behalf. I’d like to say a special tribute to all of our staff and volunteers who have gone above and beyond anything we could reasonably expect to achieve this. Together I believe we have done our best to make sure no-one is on their own.
I wish you all a safe and healthy Christmas and New Year.
12 November update
Following the recent news of progress in the development of a vaccination for coronavirus, and the small-scale reopening of our Dundee Resource Centre, I am writing to you with a degree of positivity and hope.
I take heart in the optimism of the experts involved in vaccine trials, bringing a glimmer of light as we all head into these winter months. A vaccine is everything we have all hoped for, and until then, we will do all we can to support, and protect, the thousands of people in Scotland who rely on our vital services.
Over the pandemic, we have continued to support people with dementia and their families and carers through therapeutic interventions, including video calls, telephone support calls, online groups and wellbeing visits, supporting individuals who have significant and very distressing forms of crisis. We have managed to maintain our post-diagnostic support and have learned a great deal about how to provide an online, digital and blended approach to post diagnostic support.
The pandemic has exacerbated our intention to create the UK’s first Virtual Resource Centre. We’ve known for some time that offering the sanctuary of our Dementia Resource Centre’s within someone’s own home will help us to reach many more people and the last eight months have only served to highlight this further. I would like to thank everyone who is supporting our Virtual Brick Appeal for your kind words of encouragement, and to the hundreds of you who have bought a virtual brick, donating vital funds to help build this unique online space. The people we support, and those who support us, are the very foundations of this innovative service, which will give the opportunity for anyone, at any time, to participate in therapeutic activities, to connect with other groups and areas, and to have a sense of belonging through the Virtual Resource Centre. You can read more about the Virtual Resource Centre and the Virtual Brick Appeal here.
Despite our digital progress, we remain deeply concerned about the impact of a lack of face-to-face support and respite for people with dementia and their families. Following several months of negotiations to use Dementia Resource Centres for small scale therapeutic activities, I am delighted to report that a new model of day care started in Dundee in late October. It is the first of our 21 Centres to reopen its doors, with meticulous planning and safeguarding for our staff and the people we support. In a very safe and COVID compliant way, two or three individuals per session have been participating in small group support. This has given people with dementia the opportunity to participate in therapeutic activity whilst providing carers and families with a much-needed short period of respite. You can read more about the successful reopening here. Proposals have been submitted to replicate this in all of the services across Alzheimer Scotland. These are tentative steps and we must be more cautious in areas seeing an increase in cases, however the aim is to have this high quality, low volume, therapeutic support for people with dementia, and in turn providing essential respite for families.
I was very pleased to have recently met with the Minister for Mental Health, Clare Haughey MSP, along with several officials from the Scottish Government. This was an opportunity for Alzheimer Scotland to highlight the level of changing need, stress & distress and pressure placed on people with dementia and their families and carers, which is far greater than we could ever have expected. The Minister expressed her sincere thanks and gratitude to Alzheimer Scotland staff and volunteers for the ways we have adapted our services and doing our best for the people we support. We will continue to work with the Scottish Government and COSLA to develop solutions for our dementia community, to discuss ways we can recover from the pandemic, but also meet these increased levels of need.
We have reviewed and collated the information from what people with dementia and carers have been telling our 24 hour Freephone Dementia Helpline and our frontline staff in the thousands of contacts they have had throughout this crisis. We also reviewed responses from two surveys that we asked our Dementia Advisors and Post Diagnostic Support Link Workers to complete in August and October. The survey asked them to tell us how the people with dementia and the carers they have been supporting in the community have been impacted by the COVID-19 pandemic, and the public health restrictions. As a result of this evidence gathering, we will make clear recommendations to the Scottish Government, Health and Social Care Partnerships and other key stakeholders about how Scotland can ensure that the increased needs of people with dementia and carers are prioritised, to mitigate against the harms of this pandemic in the coming months.
We look forward to updating you on how the report and recommendations are received and any progress made. In the meantime, I hope you and your loved ones stay safe and well.
21 September update
In the 6 months since national lockdown, Alzheimer Scotland has supported thousands of people with dementia, their carers and families. Like many organisations, we have reimagined and recalibrated our services, accelerating our digital innovations to give people as much stability and consistency as our bricks and mortar support. The impact on our dementia community is devastating.
We are heading into the winter months and a potential second spike in the spread of the virus. We need to protect people, but we also need to balance that with the increasing evidence of the unintended harm that we have seen over the past 6 months. We simply cannot go into the next few months without learning from what we now know. Alzheimer Scotland have raised these issues with Scottish Government ministers and have called for action to be taken now.
- We have asked that a named identified health worker is assigned to every family with a loved one in a care home to work with the family and the care home to deliver tailored visiting plans. This is required urgently to overcome the current blockages to reintroducing care home visits, which are preventing families from being recognised as equal partners in care. We need an extra level of intervention and help to ease the burden - not just for the families but also the staff. The role of the worker would be to work with the family and the care home to deliver a tailored visiting plan or together agree when that is not appropriate or safe. We believe there is more than enough staff with the right skills who could be redeployed from the existing health workforce to sit down with the individual care homes and understand their issues, then work with the family and build a personal visiting plan. That plan might be to enable visits, but where that’s not possible, to support families to cope. We are also calling for an end to blanket area-wide bans on visiting. We believe this needs to be localised and personalised, and the role of the named identified health worker can help with this.
- We have asked for a dedicated post diagnostic support fund to double the capacity to deliver high-quality person-centred support after a diagnosis, so that everyone who needs it – including those who have missed out as a result of the pandemic - can be supported after they have been diagnosed.
- To deliver Fair Dementia Care in Scotland, we have asked for an increase in the nursing care element of free personal and nursing care payments to end the inequity of people with advanced dementia paying for care, when their needs are clearly health care needs.
Scotland is widely recognised as having some of the most progressive dementia policies anywhere in the world, and there can be no doubt that substantial progress has been made, particularly in the last decade. But there are still gaps which create substantial inequalities for people living with dementia and their families and carers. This was the case in a pre covid world, but the pandemic has exposed these inequalities in the cruellest of ways and we must take action now.
6 August update
I hope this update finds you and your loved ones safe and well. It is over four months since the coronavirus pandemic impacted on Alzheimer Scotland and the people who rely on our support. I know through speaking to our local teams just how difficult this period has been for so many people, with lack of access to many of the usual coping mechanisms. Whilst I am immensely proud of how Alzheimer Scotland have adapted our support and services, we have all been waiting patiently for the day that face-to-face support would be an option.
We are now beginning to see glimpses of ‘normality’. Shops, cafes and restaurants have re-opened, the shielding rules have been paused and social distancing & face-coverings have become a regular part of our routine. We welcome the recent update from the Scottish Government confirming all registered adult day centre services that wish to re-open can do so, subject to the necessary approaches. I have outlined our plans for recommencing some of our own local support and activity below:
In the next few weeks we hope to re-open our registered day services. Whilst we don’t anticipate that we will be able to run our day services with the same numbers as we had prior to coronavirus, we will work with our local commissioners to agree a safe number in line with the detailed practice and policies we have developed.
We believe that outdoor activities with a small number of participants, such as gardening and allotment groups, could take place using public health guidance and we have asked our local teams to start planning for this. This will be a gradual process and we will cautiously upscale the groups when we know it is safe to do so. These groups will be aimed at people who would normally access our previous community activity groups and Dementia Cafes independently.
In our Dementia Resource Centres which do not have registered day services, we are planning to deliver safe indoor activities, again for smaller groups of people, and the local teams are in the process of scoping these out too.
I am very pleased to be at the stage where we able to consider re-opening our face-to-face support. However, we must understand that the virus is still out there and at the forefront of our plans is safety. We must do all that we can to keep you, our staff, volunteers and the public safe. Things will start slowly and on a small scale, however with the support and agreement of all the relevant Local Authorities, National Government and Public Health guidance we will build on this soon.
I would like to thank you all for your ongoing understanding of this and we will keep you as up to date as possible on local developments. In the meantime please stay safe and if you need any support from Alzheimer Scotland please do not hesitate to call our 24 hour Freephone Dementia Helpline on 0808 808 3000.
29 June update
I would like to start this update by thanking all of our supporters, staff, volunteers and members throughout Scotland who, despite the current circumstances, made Dementia Awareness Week a truly great success. Even though we are all so isolated from each other, we still came together and made the most of our opportunity to spread the word, share the good work and lay down our campaign for change and greater equality through relaunching our Fair Dementia Care campaign. Thank you all so much.
It is now over three months since our very first update on the impact of the coronavirus and, since then, the world that we live in has seen such significant changes. Despite this, we are still here for you. I am very proud of how Alzheimer Scotland’s staff and volunteers have worked incredibly hard to adapt quickly and ensure that we continue to make sure no one is on their own. Our Helpline, Dementia Advisors, Link Workers, Community Activity Organisers and local support teams continue to support thousands of people every day. Although not yet perfect or finished, the plans we had been making to develop better online support and digital connectivity were rolled out in weeks rather than years, helping many people keep connected. I really hope they are helping to make things easier and have a positive impact on your lives.
The Scottish Government recently announced that Scotland is now able to move in to phase 2 of the route map. As a result, we have had many questions about Alzheimer Scotland’s support returning to ‘normal’, especially as the world adapts to its new normal with the ease on restrictions. Unfortunately, many of the restrictions that have been lifted do not apply to our services, therefore we have to press on with our current support until we can get the go ahead to change. We are really sorry about this - we know how much these face to face services mean to the people we support. I hope it will not be too much longer.
We are also still working with the Scottish Government and seeking their agreement to re-open a small number of our Dementia Resource Centres. As I have outlined previously, this would provide the opportunity for one or two people at any one time to attend a local centre and participate in individual therapeutic activity, and also provide carers and families with a much-needed short period of respite. This proposal is under careful consideration and we remain optimistic that this will be the first form of face to face contact that we recommence in the near future. I will of course update you as soon as we are in a position to move this forward. We realise just how important and essential this support will be and we are desperately keen to increase the local support we can provide.
Towards the end of last week, the Scottish Government also announced that a phased approach to visiting people living in care homes would commence from Friday 3 July. You can read our statement here.
I would also like to highlight that we have updated our coronavirus guidance, in partnership with Alzheimer Scotland’s Dementia Nurse Consultants. The guidance has information on signs and symptoms of coronavirus, what to do if you have any symptoms and helpful tips & contacts. You can access this information here.
Finally, I hope you and your loved ones are keeping safe. If you need any information, support or just a listening ear, please contact our Freephone Dementia Helpline on 0808 808 3000 anytime or contact any of our local teams who are all still operating and will do their best to help you.
30 April update
As we enter our sixth week of lockdown, I want to update you on what Alzheimer Scotland is doing to continue to support people with dementia, their carers and families across the country during this time. As you may have read in previous updates, we have changed much of our support, including:
- Moving many of our physical groups and activities online or through telephone support, ensuring people remain connected to Alzheimer Scotland
- Providing one-to-one home support in some areas, as an alternative option for some people who used our day services
- Increasing the number of staff supporting our frontline volunteers on the 24 hour Freephone Dementia Helpline, which is a vital link for anyone living with dementia or their families.
As well as this, our supported housing team at Croftspar Place in Glasgow continue their 24 hour support to the tenants living there and making sure all families are as connected as possible. Our local Dementia Advisors, Community Activity Organisers, Volunteer Coordinators, Volunteers , Link Workers and all of our Locality Support Staff are continuing to support many thousands of people throughout Scotland and we are pleased that this type of alternative support has worked very well for the majority of people.
It seems quite clear to us that in the coming months, as some of the current lockdown measures change, people over the age of 70 (relevant to many of the people we support) will likely be asked to continue to self-isolate and remain at home. Alzheimer Scotland supports the measures that have been put in place in order to tackle the spread of coronavirus. We admire the way that many of the people we know and support and their families have dealt with this, and endured the loss of social contact, formal supports and connection to our local services.
However, through conversations with my local colleagues, our volunteers and with the high number of people getting in touch about their concerns over the implications of further potential long term social isolating measures, we are acutely aware that more needs to be done. We recognise and acknowledge that for some people this is starting to significantly impact on the person living with dementia and their carers. In our view, we need to develop a safe form of extra support for those people finding this simply too difficult to sustain on their own for much longer.
That is why, as part of the dialogue on how we move through this next phase of dealing with the virus and lockdown measures, we have written to the Scottish Government to seek permission and agreement to open up our Dementia Resource Centres. This would be in order to provide the opportunity for one or two people at any one time to attend a local centre and participate in individual therapeutic activity. Furthermore, it would also provide carers and families with a much-needed short period of respite. This will require the highest level of safe social distancing practice and cross infection controls and we are confident that our local staff and volunteer teams can do this.
We believe that a small level of extra support such as this will go a long way to helping balance the needs of people with dementia and their families whilst at the same time supporting the ongoing measures to tackle coronavirus.
If agreed, it will take a few weeks before we can take this step, however I wanted to let you know what our plans are and to keep you informed of what we are doing to ensure we provide the best possible support to you and your family during this time. Please get in touch with your local Dementia Resource Centre or our Helpline (0808 808 3000) if this is something you would be interested in using or supporting, and we will keep you updated with progress as we go forward.
In the meantime, I hope you keep safe and well and please do not hesitate to get in touch with us if we can help you in anyway.
6 April update:
Alzheimer Scotland have been working hard to move many of our groups and activities online. Our digital support groups, such as carer support, are now up and running. You can find out more about them by getting in touch with your local Dementia Resource Centre.
In the coming weeks we’ll also have a suite of videos on our website demonstrating activities you and your loved ones can take part in, such as gentle exercise and reminiscence. We really hope that this change to our support will ensure you, and your family, remain connected to Alzheimer Scotland during this period of social isolation.
24 March update:
In line with the most recent UK and Scottish Government advice, and in order to do what we can to keep people safe, all Alzheimer Scotland staff and volunteers will now be using their home as their work base for the foreseeable future. During this critical period all of our office bases and Dementia Resource Centres will be closed, however I want to reassure you that the organisation has not stopped working and we will be continuing to support as many people with dementia and their families as possible throughout this crisis.
We have increased the level of support available through our 24 hour Freephone Dementia Helpline, supporting our frontline volunteers with the addition of a central support team who will be able to deal with any complex enquiries and requests for local support. This team will link in with our Dementia Advisors and local colleagues who will provide follow up advice and support if required. So, if you need any help accessing things like groceries and medication, need information and emotional support or are experiencing feelings of isolation and just want to talk to someone, then we will be here for you 24 hours a day. Please do not hesitate to call us on 0808 808 3000.
For the people we support in our Day Services we are seeking agreement with local partners and commissioners to convert this into a home support service for those people who are in greatest need and we are working to ensure that we have all the necessary safeguards and agreements in place to start this in the very near future. In the meantime, we will be keeping in regular telephone contact with everyone who used this service and offer our help in any way we can.
Along with this we are putting plans in place to move many of our community groups and activities online. We know that these groups are often a lifeline for people with dementia, their carers and families and we are doing our best to make sure you can access them, albeit in a different way. This will include having a daily online surgery where you can come online and ask questions, which will be answered by an Alzheimer Scotland staff member.
We realise that not everyone will be able to access this online support and, as well as our Helpline being available, all of our local telephone contacts will be in operation. If you have any questions for our local team or need some information please use the existing contact numbers you have and we will do our best to help.
Our aim is to make sure that nobody faces dementia alone, and in these very difficult times I want to reassure the people we support living with dementia, their families and carers, our members and our many supporters that we will do all that we can to achieve this.