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 for people who live with and care for a family member with FTD, one of the more rare dementias.
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, UCLH, Queen Square, London.
We are now entering our 15th 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 appropriately in a normal social setting. Our venue is warm and welcoming. However we cannot accommodate under-18s due to the personal nature of discussions.
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.
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, 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 memory is relatively well preserved with FTD 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 the Arundell Arms, Lifton, Devon, PL16 0AA approximately every 8 weeks for a shared lunch, shared 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 sometimes 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 lunch, usually a sandwich/panini and chips and beverages, and divide the bill at the end. However some members prefer just to buy a coffee or cold drink.
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 three Regional Facilitators (RF) will contact all members by email a few days in advance of a meeting to ascertain numbers for the Arundell Arms. In between meetings members can make contact by any means acceptable to each other.
What is a Regional Facilitator and how do I contact one?
Regional Facilitators in our particular group have cared, or are caring for someone with FTD/PPA, so members have many years of lived experience of this disease.
One member attends the Rare Dementia Support Annual Regional Facilitators meeting each year at UCLH to share information and receive updates, and the Annual FTD Seminar the following day at the Wellcome Building, Euston Road, London where clinicians give presentations on the latest insights and research into FTD. Usually there is the opportunity for a carer to discuss the experience of living with this disease.
We would suggest that any prospective member contacts their RF prior to attending a meeting for the first time. If you would like to contact the RF for your county please use the email addresses on the side bar.