Who are we?
Devon and Cornwall Frontotemporal Dementia (FTD) Carers Support supports those who care for someone with the behavioural variant (bvFTD) or primary progressive aphasia (PPA). Our independent autonomous group is for those who care for a family member with this rare dementia and is facilitated by people who have first hand experience of caring for a family member with either condition. Whilst we operate in the South West we welcome inquiries from those in other counties who may wish to join our meetings on occasion, as we are very aware of how isolating a diagnosis of FTD can be.
FTD is also known as Frontotemporal Degeneration a term used often in the US and one used by some in our group as the word ‘dementia’ is sometimes seen negatively by outsiders. We are happy to accommodate both terms equally.
Our Founder Penelope Roques (now retired), worked for many years with clinicians involved in diagnosing and supporting those with Frontotemporal Dementia at the Dementia Research Centre (DRC) at the National Hospital for Neurology and Neurosurgery, Queen Square, London.
2025 is our 20th year of operating, with one founder member still attending alongside others. We are purely a Carers’ Group with no formal structures, enabling Carers to unwind in a normal social setting. However we cannot accommodate under-18s due to the personal nature of discussions. Our venue is warm and welcoming, and serves excellent food made on the premises.
Informal get-togethers
June 2021 – Strawberry Fields
October 2024 – Lifton Hall
Why the need for a Carers Group?
FTD is a dementia that often affects younger people but diagnosis can be difficult to obtain in the early years because it is experienced infrequently by GPs or clinicians.
So caregivers may become isolated when more usual dementia services neither meet their needs, nor those of the person with FTD who may exhibit difficult behaviour and a lack of empathy toward a previously loved relative.
Sometimes Carers find that friends and family are loathe to accept that there is anything wrong with the person with FTD and don’t take Carers’ concerns seriously.
Carers can be doubly disadvantaged when seeking medical help and support, as those with FTD may score highly on memory tests such as the Mini Mental State Examination (MMSE) that are administered when testing for dementia. However with FTD memory is relatively well preserved so a high MMSE score is not unusual.
Often social workers and others administering standard tests for mental capacity, don’t fully appreciate the nature of FTD and the lack of insight on the part of the person with it, thus failing to realise that capacity may only be partial when assessing finance or personal safety.
What we do – and don’t do
We meet informally at Lifton Hall, Lifton, Devon, PL16 0DR every few weeks for light meals and coffee, sharing experience, support, laughter and sometimes the odd tear. We understand the range of emotions that follow a diagnosis of FTD and the behavioural changes that may arise with it. So accounts of extreme behaviour neither surprise nor shock us, and often we can suggest some strategies for management.
We do not advise on medical matters but we can offer support whilst waiting for a diagnosis of FTD, and following a diagnosis. If the diagnosis is something other than FTD we will try to point you in the direction of more appropriate help.
We do not patronise or talk down to members and recognise that all Carers are doing the best they can in often difficult circumstances.
What does it cost?
There is no membership fee, and no charge for attendance. We each order a light meal and drinks and pay for our own orders.
Is attendance at all meetings important?
Given the nature of FTD it’s often not possible, or necessary for all members to attend every meeting. In turn, one of the two Facilitators will contact members by email a few days in advance of a meeting to ascertain numbers. In between meetings members can make contact with each other by any means acceptable to either.
What is a Facilitator and how do I contact one?
Devon Facilitators and Cornwall Contacts (CCs) in our particular group are people who have cared, or are caring for someone with FTD/PPA, so have experienced many years of living with and managing FTD.
We always suggest that any prospective member contacts a Facilitator prior to attending a meeting for the first time. If you would like to contact either Chris or Mike please use the email addresses on the side bar. People living in Cornwall can contact either Lynn or Phil, our Cornwall Contacts whose email address is also on the side bar.
If you would like to chat with one of us by phone between scheduled meeting dates we will be happy to do this. Contact us by email initially and we will get back to you to arrange a convenient time and date. Often a chat can be an ice-breaker and a prospective member can discuss personal needs.
However we do tend to be quite busy, so if somehow we miss your email message and you don’t get a response within two days, please do send another email.