FTD Carers Group

Hello Everyone, We hope you find this information helpful and please feel free to email us about our specific Frontotemporal Dementia (FTD) Carer's Group for anyone who is caring for someone with FTD. It is important to state that we are not Social Workers, General Practitioners, or Health Professionals, but are two people who have experienced FTD first hand for over a decade. This group has been set up based on supporting others and we meet on the 2nd Tuesday of every month at Heeley City Farm.

In April 2020 our FTD Carer's Group has been running for 4 years Andrew and Lee are brothers and for approximately 13 years the cared daily for there mother Valerie who developed Frontotemporal Dementia FTD) around the age of 55 and passed away at 67 in 2015 FTD is a little known dementia, although becoming more known across the world and is now being seen with better understanding as not being Alzheimer's or any other dementia (this is crucial in how we all try and diagnose, support and care for someone with FTD and each other as relatives, friends, and carers) Andrew and Lee have been advocates, campaigners, filmmakers and have openly spoken about their experiences and their family since approximately 2007 and continue to do so.

They have been engaged heavily with projects locally, regionally, nationally and across the globe in raising awareness through conferences, community talks, film screenings, art exhibitions and a solid trustful relationship with the BBC Radio and Television, Daily Express, Huffington Post, Yorkshire Post, Bolton Evening News, Sheffield Star to name a few.In 2013 Lee was awarded a National Champion by Alzheimer's Research UK (ARUK) the leading research charity in the UK  and 2nd in the world. Andrew and Lee have been recognised for their unrelenting drive to make a change and reach out to others receiving REED Carer's of The Year Awards, ARUK recognised certificates for The Valerie Foundation and Heeley City Farm as organisations working to raise awareness about FTD and supporting others. In 2014, they both decided to start their own FTD Carer's group in Sheffield at Heeley City Farm, Sheffield were both the brothers work. This group is still going strong and the only one of its kind in Yorkshire and Humberside and the 4th in the UK. The 1st FTD Volunteer support group recognised was the Cerebral Functional Unit in Salford, in which was a lifeline for the Pearse family and remains to be a central link for them in regard to up-to-date knowledge, information, advice and has a heavily attended by over a hundred carers at Salford Royal NHS Foundation Trust.If you re a carer for someone with FTD and wish to informally chat about your situation for a one-off or join in with the FTD group please do not hesitate in contacting Andrew and Lee. We offer a secure, private and confidential space to share experiences, listen, reflect, and support each other. The group members are advocating themselves and they are extremely knowledgeable and support each other. The FTD Carer's Group has been recognised by ARUK and continues in spreading the word about the group aiming to support as many people as it can.