Large group meetings
Throughout the year we host a programme of in-person large group meetings in the Rare Dementia Support Centre as well as online webinars. All RDS members are warmly invited to register to attend the meetings relevant to them. This includes people living with or at risk of a diagnosis, as well as partners, carers, family and friends.
Our large group meetings provide an opportunity to meet other people in a similar situation, share experiences and ask questions in a relaxed setting. The large group meetings and webinars include speaker-led talks and question and answer sessions on a range of subjects, offering information and advice as well as updates on the latest research. The meetings are organised around informal social time with tea, coffee and refreshments. We strive to make these meetings as accessible as possible – intellectually, physically and financially – and include experts both by profession and lived experience. .
Recordings of previous meetings can be found on the RDS YouTube channel.
On average, around 60-100 people attend our large group meetings. Attending a RDS meeting requires you to sign up as a member of RDS, which is free and only takes a few minutes. Once you have signed up as a member, you will be added to the mailing list to receive updates about and register to attend upcoming meetings, and will also be given the option to arrange a 1:1 call to discuss support options further.
There are different types of large group meetings:
Diagnosis-specific meetings
The diagnosis specific meetings provide the opportunity for people living with or affected by a rare dementia to meet with other people with the same diagnosis and in potentially similar situations. They are held in-person at a London venue, with video recordings of the presentations being made available shortly after the meetings.
“
”
It was lovely to meet other people with PCA and relate to the same issues and problems, and to take on board their coping strategies.
DLB is such a rollercoaster, one day quite normal, other days not.
It’s good to meet people and chat with families who have this form of dementia.
RDS members
Carer-only meetings
The carer-only meetings are for the carers of people living with any rare dementia diagnosis. We host 2 types of carer-only meeting:
- meetings for the carers of people who have been diagnosed relatively recently or who are in the ‘earlier stages’ of dementia.
- meetings for people who are further down the disease pathway and are in the ‘middle to later stages’.
There is some inevitable crossover for people who find themselves between the 2 types of meeting, and we try to ensure that people are directed into the groups that are best suited for them at the time. These meetings are held in-person at a London venue, with video recordings of the presentations being made available shortly after the meetings.
“
”
FTD behaviour is so unexpected, it is difficult to actually translate or explain in words to other people, even to medical professionals, what is really happening with our loved ones.
RDS member
YouTube recordings of past webinars and meetings
The online recordings of previous webinars and meetings provide RDS members with the opportunity to access disease-specific information, and hear about the latest research, stories from RDS members and updates on RDS activity. Members are able to browse the diagnosis-specific library of presentations and the RDS team can direct members to specific presentations.
What should I expect?
The format of meetings can range from small discussion groups to larger speaker-led talks on a range of subjects. We strive to make these meetings as accessible as possible. They provide an opportunity to share stories and ask questions in a relaxed setting.
We want all participants to get the most out of the meetings and to make them sustainable and inclusive for all. To ensure the meetings run smoothly and meet the needs of our members we ask all participants to follow our Ground Rules for Groups and Meetings.
All of our large group and virtual meetings are recorded and you can find recordings on the RDS YouTube channel.
Meetings are supported by the charity The National Brain Appeal, and held in London at The Hilary and Galen Weston Rare Dementia Support Centre, and across several regional locations. Regional meetings are organised by our network of volunteers.