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.

Henry Simmons
Chief Executive

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.

Henry Simmons
Chief Executive

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.

    Henry Simmons
    Chief Executive

    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:

    Day services
    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.

    Outdoor activities
    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.

    Indoor activities
    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. 

    Henry Simmons
    Chief Executive

    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.

    Henry Simmons

    Chief Executive

    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.

    Best wishes

    Henry Simmons
    Chief Executive

    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.

    Best wishes

    Henry Simmons

    Chief Executive

    Click here to read previous updates