We run UK based support groups for people living with or affected by one of five rare dementia diagnoses and we hold regular meetings for each support group. You can find more about each of our groups by visiting the relevant page:
- Bereaved Carers
- Familial Alzheimer’s Disease (FAD)
- Frontotemporal Dementia (FTD)
- Familial Frontotemporal Dementia (fFTD)
- Posterior Cortical Atrophy (PCA)
- Primary Progressive Aphasia (PPA)
The calendar below shows the meetings we have planned. All our meetings are recorded and you can find recordings on our YouTube channel.
Live-streaming information for attendees: Please be aware that some of our meetings will be live-streamed. Live-streaming is an online service that allows videos to be uploaded and viewed on the internet in real-time. This is to enable people who can’t attend to watch and contribute to the meetings live by going to the Rare Dementia Support YouTube page (see link below). The video that is uploaded is primarily directed towards speakers and slide content. The camera is positioned at the back of the room to capture only the speakers and the presentations, however there is a chance that the camera may capture faces of members if a member turns around to face the back of the room (for example, to hear a question). Voices and questions raised may be heard. Because the videos are uploaded directly to the internet, there are aspects of privacy that you may want to consider. Videos can still be edited after the support group has taken place, but the live broadcast may contain sensitive or personal information that cannot be censored live.
A key aim for this is to make support groups more accessible for those people who are not able to attend, and also to improve the speed at which videos and information can be included on the RDS website. We feel it is important for you to have advanced notice of these plans, so we can weigh up the impact of live-streaming against your preferences with regards to support group meetings being filmed. Please let us know if you have any questions or concerns.
Live-streaming information for non-attendees: For those of you unable to join us in person, we will be live-streaming this support group, meaning if you have internet access you can watch the meeting live, you will just need to visit our YouTube channel page at the time of the meeting, and the link for that is: https://www.youtube.com/channel/UCuVA3iffOcwz04qBkjZgKqg
Professionals: We want to make our meetings as accessible as possible to people living with a rare dementia and their carers. While we welcome the opportunity for professionals to learn by having access to the meetings, it is of the utmost importance that we prioritise our members living with the diagnosis and carers to be able to meet in person. For that reason, we have put together some guidelines for professionals requesting to attend the Rare Dementia Support group meetings:
- Attending the meeting in-person will be at the discretion of the Rare Dementia Support team, depending on the day’s agenda/member needs. After registering your interest to attend the meeting, a member of the support team will be in touch with you to discuss your attendance and what you can offer to the group
- Where possible, please join us using the livestream service provided for the meetings (see above).
Conduct during the meetings:
- The meetings are not to be used as an opportunity to promote products/courses etc. from your affiliated organisation
- Any promotional materials distributed at the meetings without prior discussion with the Rare Dementia Support team will be removed
We thank you in advance for your understanding.