Devon and Cornwall FTD/PPA Carers Support Group – Rare Dementia Support UCL

Who are we?

Devon and Cornwall Frontotemporal Dementia (FTD) Carers Support Group is a regional Rare Dementia Support (UCL) Group for FTD/PPA. FTD includes both behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA). Our group is solely for people who care for a family member with FTD one of the rarer dementias, and is facilitated by people who have first hand experience of caring for a family member with this disease.

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.

Group Founder Penelope Roques with her loyal companion, Toolie.

2024 is our 19th year of operating, with one or two founder members still attending alongside other members. We are solely 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.

We are autonomous in how we function, but are part of the Rare Dementia Support network at University College London Hospitals (UCLH), where professional carers will find excellent information on all the rare dementias, including video links. We adhere to RDS local group policy and membership of our group gives you automatic membership of Rare Dementia Support, UCLH.

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.

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, so 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 isn’t 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 do we 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 behaviour stemming from it. So accounts of extreme behaviour neither surprise nor shock us, and often we can suggest some strategies for management.

Only clinicians are qualified to 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.

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 Regional Facilitators (RF) 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 Regional Facilitator and how do I contact one?

Regional Facilitators (RFs) and Cornwall Regional Contacts (CRCs) in our particular group have cared, or are caring for someone with FTD/PPA, so members have experienced many years of living with and managing FTD.

All members receive an invitation to the Annual FTD Seminar in London where clinicians give presentations on the latest insights and research into FTD. Usually there is the opportunity for a Carer to discuss the practical experience of living with this disease.

We always suggest that any prospective member contacts a RF 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 Regional Contacts whose email address is also on the side bar.

However we do tend to be quite busy, so if somehow we miss your message and you don’t get a response within two days, please do send another email.

Regional Facilitators and Cornwall Contacts are DBS checked and authorised to speak on behalf of our group.