Frontotemporal Dementia Support Group Website
Welcome to the Frontotemporal Dementia (FTD) Support Group website. This site aims to provide information and support to people with FTD, and their families, friends and healthcare professionals.
This year, for the first time, countries across the globe will observe World FTD Awareness Week. FTD support organizations in at least 10 countries will collaborate on many exciting events and outreach activities.
As October fast approaches, we want to encourage FTD family caregivers, dementia care organizations and the wider community to unite and embrace World FTD Awareness Week. We urge you to become part of the ripple effect that will change the world for families affected by FTD. Find out more by viewing our poster (opens pdf).
When faced with the diagnosis of a relatively rare disease in a family member or friend, planning a future for carers is hard. There are few facilities tailored for the younger sufferer, particularly for people with Frontotemporal dementia, which adds to the distress and burden that this and other similar diseases cause. The Frontotemporal Dementia Support Group (FTDSG) [ formerly Pick's Disease Support Group (PDSG) ] puts you in touch with people who understand.
The main aims of the FTDSG are to provide information and to support carers. The group meets several times a year in the United Kingdom and has an annual seminar open to professionals and carers. You might like to read the quarterly newsletters which are an important way of providing information. These are written by carers and professionals and can be mailed in hard copy or accessed through this website.
Caring for people with frontotemporal dementia is hard, there are few facilities tailored for the younger sufferer and those are not always appropriate for people with frontotemporal dementia. Also there are no specific treatments yet for frontotemporal dementia. All this adds to the distress, isolation and burden of caring. The FTDSG tries to decrease the burden by providing information and support.
The Frontotemporal Disease Support Group incorporates:
- Behavioural Variant Frontotemporal Dementia (including Pick's Disease)
Primary Progressive Aphasia, which includes:
- Progressive Non-Fluent Apahasia, Semantic Dementia and Logopenic Aphasia. There is a specific support group for people with Primary Progressive Aphasia.
The FTDSG is under the umbrella of The National Brain Appeal Registered Charity Number 290173.
The FTDSG works closely with the Association for Frontotemporal Degeneration, an American group dedicated to the support of people with FTD and their carers. Please also visit their site at www.theaftd.org for more information.
Other dementias can also lead to behavioural problems, and whilst we are happy to support people wherever possible, information about those other dementias can be found at the links below:
- Alcohol Related Dementia
- Lewy Body Dementia (opens the Lewy Body Society website)
- Corticobasal Degeneration (opens the PSPA website)
- Motor Neurone Disease (opens the MND Association website)
For jargon free research updates on FTD for all people in the FTD community please visit www.ftdtalk.org.
The FTDSG is under the umbrella of The National Brain Appeal [formerly the National Hospital for Neurology and Neurosurgery Development Foundation] Registered Charity Number 290173. We gratefully accept donations for both the running of the support group and for FTD related research. Details of how to donate to each of these are available on our 'Donations, Fundraising and Research Fund' page.
Please note that you assume full responsibility and risk when attending support group meetings, and also in the use of the information contained on our website, in our newsletters and at support group meetings.
Page last modified on 12 oct 15 18:17