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Dear PCA Support Group members,We hope you and your loved ones are continuing to manage as well as possible at this difficult and unsettling time. Please rest assured that our Direct Support Team is still available and we strongly encourage you to get in touch, and not just for urgent worries or dementia-related discussion, but also for more general conversations and check-ins. If you would like to arrange a call with a member of the team, please email [email protected]. In this newsletter, you can find an update regarding the support we are offering against the backdrop of COVID-19, an update about our next PCA Support Group meeting (to be held online), research updates, and information on fundraising from The National Brain Appeal. As always, we are keen that these newsletters and our Support Group meetings are shaped by what you would find most useful, so please do get in touch with Emma Harding at [email protected] if you have any suggestions. Thank you as ever to those of you who have offered feedback, steering and guidance so far, and for your patience as we continue to try to incorporate this. It is hugely appreciated. Yours faithfully, The PCA Support Group Team
Our next meetingOur last PCA Support Group meeting was in April, held as an online webinar for the first time, and we were so pleased that over 80 of you were able to join us live. We heard updates from the RDS and Dementia Research Centre (DRC) teams about the RDS service and research, before a Q&A panel with expert members of our clinical, research and support teams. In case you missed it, the recording of that meeting is available on our YouTube channel here, and the Q&As are available in writing here. Our next meeting will also be held online as a webinar and we hope that just as many of you will be able to join us. The meeting details are as follows:
Date: Friday 21st August 2020Time: 10am-11:30am BSTHow to join: Click here to register in advance of the webinar
Please note you must register using the link provided in order to receive your individual link for this meeting.
After registering, you will receive a confirmation email containing information on how to join the webinar.
As always, if you are not able to join at the
PCA Support Group NewsletterAugust 2020
Enquiries: [email protected] | www.raredementiasupport.org
time, the recording of the meeting will also be available on the Rare Dementia Support YouTube channel after the meeting takes place.
Agenda for the meeting:10:00-10:05 Welcome Emma Harding & Seb Crutch 10:05-10:20 In Conversation: RDS member Valerie Mansfield & Seb Crutch10:20-10:30 RDS and research updates:
- Direct Support Team and RDS Impact Study updates (Olivia Wood)
- A Citizen Science proposal (Dr Keir Yong) - RDS regional groups update (Roberta McKee-Jackson)
10:30-10:45 In Conversation: RDS member Martina Davis & Nikki Zimmermann10:45-11:30 Panel Q&A session with:
- Seb Crutch (Professor of Neuropsychology, DRC, UCL)
- Dr Ross Paterson (Senior Clinical Research Fellow and Honorary Consultant Neurologist at UCL)
- Martina Davis (RDS member) - Valerie Mansfield (RDS member) - Dr Keir Yong (Senior Research Fellow, DRC, UCL)
- RDS Direct Support Team Chaired by Emma Harding
Closing video – fundraising updates from The National Brain Appeal (Eva Tait & Alexis Gebbie).
Send us your questions for the panel: if you have a question you would like to put to our expert panel, please send it to Olivia Wood before the meeting at [email protected].
Please note: if we feel your query would benefit from more one-to-one support one of the Direct Support Team may be in touch with you directly.
Covid-19: Rare Dementia Support updatesRaising awareness of the impact of COVID-19 on people with rarer dementiasDr Aida Suárez-González, Senior Research Associate at the DRC, has been leading the charge in raising awareness about the specific impacts COVID-19 is having on people with different types of rare dementias with their different symptom profiles. Here you can read a letter published in the British Medical Journal about the specific needs of people with rarer dementias at this time.
Impact of COVID-19 RDS surveyWe are very keen to build on this and to know more about your experiences of lockdown, the various impacts it has had on you and your families, and the ways you have found to respond and manage, as well as any unexpected positives to be taken from the significant ways our lives have all suddenly altered. We have designed a brief survey and we would greatly appreciate anything you are able to share about your experience: SURVEY - Impact of COVID-19 on people with rare dementias.
RDS Direct Support Team We would like to remind you that at this very difficult time, when everyone is feeling more isolated than ever and the days are long with restrictions on what we can do,
Enquiries: [email protected] | www.raredementiasupport.org
the Direct Support Team is here to help. We have created a selection of resources and are providing support calls and emails to answer your questions and worries. We liaise with the Clinical and Research Teams so expert advice can be easily sourced. We can provide post-diagnostic and person-centred support, as well as general information and advice about PCA (e.g. helping people to understand their diagnosis, common symptoms, etc.). We can also signpost you to relevant services, which will aid care planning and give you access to the most appropriate local help you need.
Regional Support GroupsMany of the RDS Regional Support Groups (e.g. FTD, PCA, PPA) continue to meet remotely during the pandemic through online platforms such as GoToMeeting or Zoom. The following groups are meeting online: Berkshire, Devon/Cornwall, Devon/Exeter, Hampshire, Hertfordshire, Kent, Norfolk, Northamptonshire, Oxfordshire (Central England), Surrey, and Wokingham.
For more information on any of these groups, please contact Roberta McKee-Jackson at [email protected].
Buddying We know that COVID-19 has meant that many regional support groups and activities have had to cease, meaning that many people may feel more isolated. At RDS, we do have a Buddying Network and can try to help people in similar situations to connect with one another. Some members choose to communicate by email, others by telephone, while some have even set up small WhatsApp groups and Zoom meetings amongst themselves.
If you are interested in being connected to other members of RDS in this way, please email us at [email protected] with the following information:
• Name• Do you have PCA yourself? Or are you a
friend/family member of somebody who does?
• Location• Any other information you feel is relevant
We will add you to the list and try to connect you with other people. We will always ask for your explicit permission before passing your contact information on to anybody else.
Small online group discussionsAs many of you will know, at the start of lockdown we began offering some small online group discussions on various themes. This is something we had been planning to offer as the RDS service developed, but the Covid-19 crisis really forced us into action and we have been very encouraged by the uptake of the groups.
The first round launched in May, and over 80 RDS members signed up. By the time the second round launched in July, we had over 100 members sign up within the first 48 hours of the invitations being sent out.
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The groups of 10-12 people at a time have been focused on topics such as Health and Social Care Professionals and Care Planning, Independence and Identity, and Grief and Loss, and have been an incredible learning opportunity for us in terms of the support that is needed and how this might best be delivered. We thank all of you who have participated for sharing, supporting each other and, in turn, helping to shape the service so generously. We will let you know when the next round of groups will be running and hope to see you there.
Other resourcesWe have also put together some online information and resources, as well as videos with practical advice and tips to help you through this period. Click here to view our Coronavirus resources and advice, including short videos with practical tips for living with dementia in lockdown, and arts and cultural resources that can be accessed from home.
RDS Impact Study updates
The RDS Impact Study is a world-first, five year project to explore the value of multi-component support groups for people living with and affected by rare dementias, and is now well underway. Here are some updates about what each strand of the project is focusing on, and how you can get involved:
1. Interviews about what support is needed and when: We are interviewing people with different types of rare dementia and the people who support them to better understand what your support needs are and when you need them. Taking part in this part of the study would involve an in-depth interview with one of our researchers and completing some questionnaires about your experiences.2. Creative activities – drawing and poetry: The arts have been used for centuries to help explain and understand the world from different perspectives. We want to better understand how different means of communication can help us to understand the experience of rare dementias and what the active ingredients of support groups are; what helps (or doesn’t help) about being involved as an RDS member. If you would like to take part in this part of the study, this would involve using your words to create poems with the help of a professional poet and/or creating visual line drawings of your support journey.
3. Living as well as possible with dementia (resilience): We want to create a questionnaire that measures the resilience of people living with a rare dementia. If you would like to be involved we would ask you some questions about the challenges you face and how you manage them, and for your feedback on our questionnaire.
4. Online support for living better with dementia: We are developing an online program for families and supporters of people with certain rare types of dementia and we will be asking for your help to test how easy the program is to use and how well it works in terms of providing support.
Enquiries: [email protected] | www.raredementiasupport.org
5. Exploring the benefits of support: We are also looking to understand the cost benefit of support for people affected by rarer dementias, and if you are interested in contributing to this part of the project we would ask you to complete some questionnaires and answer some questions about the services you have used.
All aspects of the study can be participated in remotely, so please do feel free to get in touch if you would like to hear more or to get involved, now or in the future, by emailing [email protected] or by calling 07388 220 324.
For more information about the study, you can also visit our webpage.
Young-Onset Dementia: An Online Knowledge Exchange Event – hosted by Nipissing University (Canada)
As part of the Rare Dementia Support Impact Study initiatives, Nipissing University (Canada) organized a virtual knowledge exchange event on 16th June 2020 to
raise awareness of rare and young-onset dementias.
The event featured nine sessions delivered by academics and practitioners from Canada and the UK, and had roughly 200 registered participants from around the globe; comprising people with dementia, caregivers, practitioners, and academics.
Some of the key messages were:• The importance of having events such as
this to raise the profile of rare and young-onset dementias, which according to one of the attendees is often not talked about at dementia conferences. Dr Donald Weaver of the Krembil Research Institute, Canada, noted that “all dementia is not Alzheimer’s,” emphasising the need to increase awareness of rare and young-onset dementias and reduce stigma.
• Dr Emma Harding of University College London, UK shared results of an ESRC-NIHR study; ‘Seeing what they see – compensating for cortical visual dysfunction in Alzheimer’s disease’, which presents a unique understanding of the lived experience of posterior cortical atrophy (PCA) and the practical, everyday coping and problem-solving mechanisms people living with PCA adopt in managing visual impairments associated with the condition.
• According to Dr Mary Pat Sullivan of Nipissing University, Canada, “even with young-onset dementia, families still do family.” This underscores the reality that families adapt not just to the diagnosis of dementia but also the different transitions that accompany this diagnosis. Additionally, this process of adapting often involves multi-generational family members (not
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just spouses/partners), highlighting the need for more family-centred care and research.
• Loneliness and social isolation, often used interchangeably, are separate measures of social health, which is an important part of overall health and well-being. However, very little is known about these two measures in people living with dementia and their caregivers, according to Dr Christina Victor of Brunel University, UK. Preliminary results from her research show that loneliness and social isolation are not only experienced differently in people living with dementia and their caregivers, but also influence their interdependent relationships and overall well-being.
All the sessions are available to view on the Nipissing University YouTube channel here.
Research updatesAlzheimer’s Association International Conference (AAIC) 2020
The Alzheimer’s Association International Conference is the largest and most influential international meeting dedicated to advancing dementia science.
Each year, AAIC convenes the world’s leading basic science and clinical researchers, next-generation investigators, clinicians and the care research community to share research discoveries that lead to methods of prevention and treatment and improvements in the diagnosis of Alzheimer’s disease.
This year the conference was held virtually, which allowed unprecedented numbers of attendees. Here Dr Keir Yong (Senior Research Fellow at the Dementia Research Centre, UCL) shares some key messages from the conference relevant for the PCA community:
• For the first time, there was a session which joined up researchers from two different interest areas, to share insights on a range of different imaging techniques that can be used to increase our understanding of PCA.
• Professor Nick Fox gave a talk on early-onset Alzheimer’s disease, mentioning RDS’s activities and a recent letter to the British Medical Journal (see page 2), as well as major international research regarding PCA, including the first consensus classification criteria for PCA and the largest study of risk factors for PCA.
• Work on variation in ‘typical’ Alzheimer’s disease was included, providing evidence of a large number of people with Alzheimer’s disease in their 70s or 80s who have relatively greater visual to memory difficulties, but would not be considered to formally fulfil diagnostic or research criteria for PCA.
• From an imaging perspective, work was presented on people with Alzheimer’s disease in whom the back of the brain is most vulnerable compared to relatively spared regions that are usually considered characteristic of ‘typical’ Alzheimer’s disease (again, most of these people would not be considered to formally fulfil diagnostic or research criteria for PCA).
• Dr Keir Yong made the top 3 Non-Pharmacological Intervention PIA Early
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Career Awardees, with the winner to be decided by their Executive Committee. Keir is the Communications Chair of the Atypical Alzheimer’s disease Professional Interest Area (PIA). This group is currently surveying its membership (over 500 clinicians and researchers worldwide with expertise in Atypical Alzheimer’s disease) to provide guidance on reliably assessing symptoms of PCA, with the goal of improving how visual and cognitive examinations are conducted and to guide further research.
Auditory processing in PCAWhile we often talk about the visual symptoms common in PCA, we know that many of our members experience other difficulties too. So we are pleased to be able to share with
you some research findings about auditory processing in PCA, which will soon be published in the scientific journal ‘Brain’. This work was conducted by researchers at the DRC – many of whom are also regular faces at RDS Support Group meetings – and Dr Chris Hardy and Dr Keir Yong have provided a summary of the study and findings below.
Hearing is an incredibly complicated process that we tend to take for granted until we notice problems with it. Sounds from the outside world cause our eardrums to vibrate, and these vibrations ultimately cause signals to be transmitted up through a series of different ‘relay stations’ before they reach our brain. At which point, different brain areas might be able to ‘work out’ answers to a number of different questions; for example, “What caused that noise?”, “Who said that?”, or “What did they say?”
Because it is so complicated, hearing is actually quite vulnerable – any damage along that pathway from the ears to the brain can cause problems with hearing.
One of the most complex and computationally difficult tasks for our brains to achieve is something called the ‘cocktail party effect’. This describes the brain’s remarkable ability to focus attention on a specific person speaking even amongst a noisy background of many people speaking, i.e. when a person can focus on a single conversation in a crowded room.
Research led by Dr Joh Goll and Professor Jason Warren at the Dementia Research Centre had previously designed an experiment to test this ‘cocktail party effect’ scientifically, and showed that people with Alzheimer’s disease found this task really difficult relative to people without a dementia diagnosis.
Furthermore, they found that damage to regions at the back of the brain was responsible for these problems in people with Alzheimer’s disease. As these areas were quite far back (or ‘posterior’) in the brain, it seemed likely that people with PCA might have similar problems, which could relate to something that some people with PCA have previously mentioned: that following conversations in noisy rooms can be very difficult at times.
But as this had never been looked at in PCA before, Dr Keir Yong and Dr Chris Hardy set out to evaluate this. They used the same ‘cocktail party’ tasks that had been used in the original study, but this time gave them to people with PCA. As a group, the people with PCA who participated found multiple sounds more difficult to distinguish or group
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together compared to sounds presented individually.
These findings provide suggestions as to why some people with PCA might have difficulties hearing when there is lots of background noise, such as in a busy restaurant or café, or other situations where there are lots of people talking at once. Furthermore, the results might be important for how clinicians understand hearing problems in PCA, for example, considering auditory ‘clutter’ and the design of hearing aids.
Further research could investigate environments that better manage and limit unnecessary background noise and whether these may promote effective everyday hearing.
If you have any questions about the latest research in PCA that you would like our panel to answer at the PCA Support Group meeting on 21st August, please send them in advance to Olivia Wood at [email protected].
RDS Support CentreWe are excited to announce that the National Brain Appeal is launching a capital appeal to create a permanent home for RDS in the form of the world’s first Centre for Rare Dementia Support near Queen Square.
The Centre will:• Support: guide and empower people
living with rare dementias and their families.
• Educate and train: those who work with people living with rare dementias (such as speech therapists, nurses, physiotherapists, opticians and GPs), and the public more widely.
• Research: into how best to provide support and the impact of support services on people living with rare dementias: for people with a diagnosis, and for carers and families.
The Centre should be an example of how best to support those living with a rare dementia, involving members in all aspects. It will lead in the bespoke education of families, and healthcare and other relevant professionals on rare dementias.
Fundraising update from The National Brain AppealThe Rare Dementia Support fund is held by The National Brain Appeal – the charity dedicated to supporting the work of The National Hospital for Neurology and Neurosurgery and the UCL Queen Square Institute of Neurology in Queen Square, London. The fund raises money to provide specialist support group services for individuals living with or affected by one of the less common dementia diagnoses.
Rare Dementia Support, led by the Dementia Research Centre (DRC), relies on funding from donations, grants and trusts, and supporters taking part in fundraising. The National Brain Appeal funds the support
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groups, staff, admin and other associated expenses. Over 2,000 members are currently receiving emails and newsletters with around 1,000 attendees across all RDS meetings.
We are delighted to say that over the next three years, The National Brain Appeal is increasing its fundraising target from £300,000 in 2020-2021 to £350,000 in 2021-2022 to develop and extend the RDS service under three pillars of activity:
• Support for people living with rare dementias and their families;
• Education and training for professionals;• Pioneering research into the design,
delivery and impact of support services.
The National Brain Appeal supports Rare Dementia Support’s ultimate aim that everyone affected by a rarer form of dementia should have access to specialist information and support, as well as contact with other people with a similar condition.
Special thanks go out to Rosie and Kate Duncan were meant to run the Manchester 10k in May. The run has been cancelled but they raised £487.50 for RDS and will run an online 10k challenge instead.
In memory of his father Lammert, Robby Hijstek is cycling 700km from Spijkenisse in Holland to Trowbridge on his father’s old mountain bike this month to raise funds
for FTD Research and has so far raised £625. He will set out on 29th August, the day that would have marked his father’s 60th birthday. Best of luck Robby!
Ashton Goode (10 years old) accomplished an amazing feat by climbing the height of Mount Everest on his stairs at home in May and raised an incredible £1,193 for the Dementia Research Fund. He walked up and down his stairs 3,540 times!
David Hayes, whose mother is living with dementia, shaved his head in June and raised £2,245 for the Dementia Research Fund.
Thank you all for taking on these challenges whilst living in the ‘new normal’!
The National Brain Appeal website has an inspiring list of physically distanced fundraising ideas – from #DeclutterAndDonate to virtual pub nights!
We have also just introduced ‘Runclusive’ which is a series of virtual events with a difference; bringing together your favourite officially licensed physical events in a virtual format.
All you need to do is sign up, choose your event and select that you want to participate in aid of The National Brain Appeal. Then run or walk your race virtually (make sure you track your distance on an app), submit evidence of completion of the event and then you will receive a medal! Please email Alexis Gebbie at [email protected] to let us know that you would like to take part in an event for RDS.
To sign up to The National Brain Appeal’s fundraising e-letter please click here or to read the latest edition click here.
Enquiries: [email protected] | www.raredementiasupport.org
DISCLAIMER: Our support group based correspondence is generic in nature and we are limited in our ability to offer specific advice via this means. We aim to ensure that all information is as accurate as possible but we accept no responsibility for any errors, omissions or inaccuracies, or for any adverse consequences of any kind arising from the use of support group based content. Please note RDS is not a crisis or emergency service. RDS team members are clinically informed, but RDS is not a clinical service and does not provide individual medical interventions or treatment. Please see the clinician responsible for your care, a social services representative, or your GP if you have specific needs which require attention. Any medical decisions should be taken in discussion with an appropriate health care professional.
Enquiries: [email protected] | www.raredementiasupport.org
To make a donation to the Rare Dementia Support fund you can visit The National Brain Appeal website or please contact The National Brain Appeal on 07966 634201 for further details about how to donate by bank transfer.
You can also visit the JustGiving page, although please be aware that fees apply.
If you have any queries or ideas, or would simply like to know more about the fund for Rare Dementia Support, please contact Eva Tait at [email protected].
UCL Integrated Legal Advice Clinic’s Dementia Advice Service
Access to this service is available to all members of the PCA Support Group. The service is able to offer free one-off advice sessions on a broad range of legal issues, including welfare,
benefits and Lasting Powers of Attorney.
For more information on the service or to request an enquiry form to complete, please contact the service directly at [email protected].
Until next timeAs always, this newsletter comes with our best wishes, and please do not hesitate to get in touch with us if you would like to check in, have specific questions, or would like to share any tips and suggestions you have for managing at this difficult time.
Yours faithfully,The PCA Support Group Team