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Rare Dementia Support
Добавлен 4 сен 2015
We run specialist support group services for individuals living with, or affected by, one of five rare dementia diagnoses: FAD, FTD, fFTD, PCA and PPA.
Visit www.raredementiasupport.org for more information.
Visit www.raredementiasupport.org for more information.
PCA Annual Seminar - 19th April 2024
The PCA Annual Seminar was held on Friday 19th April 2024 at the Sir Hans Sloane Lecture Hall, Coram Campus, 41 Brunswick Square, London WC1N 1AZ
Agenda
00:00:00 Welcome Announcements: Prof. Seb Crutch and Nikki Zimmermann
00:11:56 Research Update: Dr Keir Yong
00:24:04 PCA Strategies - What helps at the beginning: Heather and Ian Richardson, RDS Members with Karen Tapson
00:40:31 PCA Strategies - What helps at the later Stages: Robert Adams, RDS Member
01:17:57 RD-Talk:Better Living Intervention for PCA Carers: Ollie Hayes
01:25:46 PCA Tips: What have people found helpful at different stages of PCA?: Dr Emma Harding and Dr Janneke van Leeuwen
Agenda
00:00:00 Welcome Announcements: Prof. Seb Crutch and Nikki Zimmermann
00:11:56 Research Update: Dr Keir Yong
00:24:04 PCA Strategies - What helps at the beginning: Heather and Ian Richardson, RDS Members with Karen Tapson
00:40:31 PCA Strategies - What helps at the later Stages: Robert Adams, RDS Member
01:17:57 RD-Talk:Better Living Intervention for PCA Carers: Ollie Hayes
01:25:46 PCA Tips: What have people found helpful at different stages of PCA?: Dr Emma Harding and Dr Janneke van Leeuwen
Просмотров: 679
Видео
FTD Annual Seminar - 8th March 2024
Просмотров 6395 месяцев назад
The FTD Annual Seminar was held on Friday 8th March 2024 at the Sir Hans Sloane Lecture Hall, Coram Campus, 41 Brunswick Square, London WC1N 1AZ Agenda 00:00:00 Welcome announcements and introduction: Prof Jonathan Rohrer and Nikki Zimmermann 00:09:03 An update on scientific research in FTD: Prof Adrian Isaacs 00:31:57 Current RDS services and update on the RDS Centre: Prof Seb Crutch and Nikki...
PCA Support Group Webinar - 1st December 2023
Просмотров 8869 месяцев назад
Agenda 00:00:00 Welcome, introduction, and overview of PCA: Prof Seb Crutch 00:11:26 ‘Sharing tips and strategies to support everyday activities in PCA’ : Dr Keir Yong and Dr Emma Harding 00:30:32 ‘Rare Space’ Creativity in 2023: Charlie Harrison 00:42:50 'RDS Member Experience': Felicity, Julia and Karen 01:00:30 'RD-Talk': Dr Emilie Brotherhood 01:04:08 Panel Q&A session chaired by Prof Seb C...
FTD Support Group Webinar - 8th November 2023
Просмотров 6389 месяцев назад
00:01:00 Welcome and Announcements: Prof Jonathan Rohrer 00:05:36 Compulsive Behaviour and management strategies: Dr Samantha Stern 00:27:57 Developing an online intervention for people living at-risk of FTD: Dr Emma Harding 00:48:50 RD- Talk: Dr Emilie Brotherhood 00:53:11 Q&A hosted by Prof Jonathan Rohrer
PPA Support Group Webinar - 3rd November 2023
Просмотров 66310 месяцев назад
Agenda 00:00:00: Welcome Announcements and Introduction: Prof Jason Warren 00:10:56: What Happens in the Cognitive Disorders Clinic: Prof Jason Warren 00:24:33: Aims and Processes in Research: Prof Jason Warren 00:33:09: Developing a Pathway in PPI: Dr Anna Volkmer and Co Presenter 00:50:23: RDS Members Experience: Nikki Zimmermann with Andrea and Chris Chadburn 01:14:20: RD- Talk: Dr Emilie Br...
RDS Advert 2023
Просмотров 77011 месяцев назад
We’ve made an advert about RDS, please do feel free to pass the link on to family, friends and anyone you know who is interested in the experiences of those living with rare dementia and the support RDS provides.
FTD Webinar - 16 August 2023
Просмотров 699Год назад
00:00 Welcome and Announcements: Professor Jonathan Rohrer 05:16 What do we know about FTD around the World?: Professor Jonathan Rohrer 14:51 World FTD United and other support groups around the world: Nikki Zimmermann 28:28 Speech and Language Therapy for PPA studies and online therapy around the world: Dr Anna Volkmer 40:33 Trials and Research studies around the world: Professor Jonathan Rohr...
PCA Webinar - 18 August 2023
Просмотров 520Год назад
00:00:00 Welcome, introduction, and overview of PCA: Prof Seb Crutch 00:06:28 Post AAIC 2023 Feedback on Research and Treatments: Dr Keir Yong 00:23:00 ‘Rare Space’ Creativity and the PCA Community: Charlie Harrison 00:36:32 The Chelsea Flower Show Experience: David and Helena Clarke & Karen Tapson 00:57:50 Help Us Design Better Online Support for PCA - Emilie Brotherhood 01:03:22 Panel Q&A ses...
FAD Support Group Meeting, 10th June 2023
Просмотров 317Год назад
00:00:00 Hello, housekeeping and introduction to the day - Helen Rice and Prof. Nick Fox 00:08:07 Updates and advances in treatments and diagnosis - Prof. Nick Fox 00:29:10 DIAN-TU Clinical Trials Updates - Dr Kat Patterson 00:48:08 Genetic counselling and testing in FAD - Dr Nayana Lahiri 01:15:22 Sharing genetic risk information with children and young people - Prof. Alison Metcalfe 01:40:49 ...
Psychological Support for People Living at Risk of FTD
Просмотров 190Год назад
A presentation by Dr Samantha Stern as part of the fFTD Support Group Meeting on Saturday 1st July 2023
Nutrition & Late Stage Dementia - Alison Smith - 12.05.2023
Просмотров 531Год назад
Nutrition & Late Stage Dementia - Alison Smith - 12.05.2023
Mid - Late Stage Carers Webinar - 13th December 2022
Просмотров 986Год назад
Mid - Late Stage Carers Webinar - 13th December 2022
PCA Support Group Webinar - 9th December 2022
Просмотров 768Год назад
PCA Support Group Webinar - 9th December 2022
FTD Support Group Webinar - 9th November 2022
Просмотров 880Год назад
00:00 - 02:56 Welcome and Introduction 02:56 - 24:08 When do I need to ask for help?: Nikki Zimmermann and Livvy Wood 24:08 - 52:22 When do I need to think about care option transitioning?: Claire Waddington and Trish O’Hara 52:22 - 1:29:06 Extended Q&A Session chaired by Professor Rohrer and the Direct Support Team
Early - Mid Stage Carers Seminar - 7th September 2022
Просмотров 480Год назад
Early - Mid Stage Carers Seminar - 7th September 2022
PCA Support Group Webinar - 24th August 2022
Просмотров 7992 года назад
PCA Support Group Webinar - 24th August 2022
Early-mid stage carers support group webinar 18 02 22
Просмотров 6842 года назад
Early-mid stage carers support group webinar 18 02 22
PCA Support Group Webinar - 10th December 2021
Просмотров 6312 года назад
PCA Support Group Webinar - 10th December 2021
Late -Mid Stage Carer's Virtual Support Group Webinar - 3rd December 2021
Просмотров 6862 года назад
Late -Mid Stage Carer's Virtual Support Group Webinar - 3rd December 2021
DLB Support Group Webinar - 30th November 2021
Просмотров 3372 года назад
DLB Support Group Webinar - 30th November 2021
3896 Major Path
Ricardo Coves
I think I might get dementia as well. 41 yo here
I’m 33. My boss asked me if my job was too much for me. I’ve forgotten clients names…people I’ve worked with for four years. Basic math is hard now. I’ll be driving home and forget where I’m going. I can’t multitask anymore. I can’t communicate like I used to…I use words that sound like the word I’m supposed to use, but can’t find the actual word. It started after a severe hemiplegic migraine. I’ve had three more migraines since and I know they can cause damage to the brain, but I didn’t know it would be this detrimental.
Is there anywhere in Cumbria where I can get support
The guy obviously had metabolic disease.
PCA Documentary Link ruclips.net/video/tHroiKZ7JL4/видео.htmlsi=KzvwfT5lllNZF8vh
Wow, this is such an amazingly clear presentstion. I hope Harry can teach doctors in Australia.
Thank you
Thank you so much..
51:50
My heart just keeps thanking you and thanking you doctor uromi RUclips channel for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Herpes infection you are amazing.
My heart just keeps thanking you and thanking you doctor uromi RUclips channel for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Herpes infection you are amazing.
My heart just keeps thanking you and thanking you doctor uromi RUclips channel for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Herpes infection you are amazing.
Thank you all of you at RDS - we so need this support and appreciate you all so very much.
Sometimes I can't remember what I did 5 minutes ago!
Thank you so much for sharing your lived experience. I am studying to be a speech therapist and it is very helpful to understand.
Rapidly Progressing Covid Young Alzheimer's is what my hubby died from at 55. He got covid in the being and shots. The shots made him worse. The last shot started the head drops and seizures. Doctors couldn't help. This virus stayed in his brain. Within 1 year He couldn't recognize a chair from a person. His words puzzled. 2 years forgot how to sleep and use the bathroom. 3 year forgot how to breathe and eat and live. He didn't have anything like Alzheimer's before he got Covid in early 2020. The neorologials team at a well know hospital in Cleveland didn't know what was wrong with him. They test for Mad Cow and Als and everything nothing and the Coroner refused to do a investigation. I believe that it's a coverup and they know someone and they refuse to look into this. I couldn't afford investigation. Now when I feel like I can talk about this I'll do videos on what happened I need to do this for him to get Justice. But now am not able for the time being.
Thank you.
please let the dementia affected person speak so that we can hear and recognize the presentation and an example of this illness. there are no examples to be seen where the affected person is present.
This is the best video so far on FTD. Thank you
Very helpful--I only just discovered these videos. My husband has been in a care home for 5 weeks after 2+ weeks in hospital. I am trying to accept what is happening to him.....not easily.
recently diagnosed with CSVD and given a prognosis of eventual FTD. this information has clarified much for me. I have superior memory but problems with language and attention. It's ironic. I'm an author who writes murder mystery books and teaches language use, grammar and more.
"Pick yourself up off the floor and have a strong drink." What kind of BS advice is that!? There must be better advice some where else. Plus the bloke who was interviewed is old! Alzheimer's occurs much younger, it's just taboo to talk about it and most people just brush the signs off as fatigue or inaptitude.
I'm 38 and struggle with bad fatigue amongst the memory losses and thinking problems, struggle with words etc its getting worse
Me too
Taking care of my friend now. It's tragic. She started showing symptoms in her mid 40's
Mam my age is 45 l also facing memory problem . Even l forget what l did yesterday . What should l do . Kindly suggest me. Thanks.
see a neurologist or exercise and follow a healthy diet alongwith quality sleep
❤️
My advice is take no more vaccines as the aluminium is found in the brains with people with Alzhiemers but we are just going to except this disease as a norm like cancer
Thanks for sharing
What is worrying to me is the normalisation of living in a way that avoids aggressive behaviour, and mitigating violent behaviour. It is not acceptable that a partner should live with abuse, even if the person they care for does have dementia, I know it's not their fault, but aggression and violence are not acceptable.
This is very helpful in understanding the changes I am experiencing.
My prayers are with you..❤️
Can I ask if you’re looking at alternatives rather than medical because you will only understand if you have an open mind.
WHAT ARE THE EARLY SYMPTOMS OF PPA ?
thank you Bill! for teaching us so much
How do I join the support groups? My mom was just diagnosed.
www.raredementiasupport.org and sign up to become a member
That initial description of PPA and all its variants was sooo informative
Thank you for so generously sharing this. It’s very helpful to help understand the condition.
These people speak pretty good they have PPA. My girlfriend has it she can’t put two words together.
Thanks for the upload!! You are late to the party = Promo`SM !
My mom has alzheimer's an i would realy like to get this drug please.
😄👍
Amazing!! Great to hear Jason Warren Sir💐
Thank you for your information, which is interesting but I don't think I need all this support just yet for my wife, who has non-fluent PPA but I need to know what is out there to call for more support when the time comes for needing more. I just don't want to let her down and to be able keep her brain as strong as possible for as long as possible. I can call "help" but I don't know that I need it for the moment.
Thank you. Really helpful information.
App Store widget
Seems similar to Broca's aphasia. Thanks for the video
Does anyone know who made the american 70s documentary about a young mans father who slowly deteriorated?. It took place in the north rural u.s.a.
The sharp pain I usually felt inside my ear was unbearable for me that I had to use herbal supplements from ruclips.net/channel/UCb34y4rSXhRGlc3azGtyyvA on treating my Tinnitus condition and after using the supplements for several weeks the pain stops completely and I have being examining myself for months now without the pain coming back.
Great!
Thank you for this ... always find meetings interesting but Q&A really helpful