Welcome to the Devon and Cornwall FTD Carers Support Group

Who are we?

The Devon and Cornwall Frontotemporal Dementia (FTD) Carers Support Group  is for people who live with and care for a family member with FTD, one of the rarer dementias.  This includes both behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA).

Our group 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.

Group Founder Penelope Roques with her loyal companion, Toolie.

The group has been in existence for over 13 years, with founder members still attending alongside bereaved members. We are solely a Carers’ Group with no formal structures. This enables Carers to unwind easily and more appropriately in a normal social setting, and in warm and welcoming surroundings, although the group is not suitable for children due to the personal nature of discussions.

A group photo of the FTD support group
Informal get-together

We are autonomous and independent in how we function, but are affiliated to Rare Dementia Support at University College London Hospitals (UCLH) where professional carers will find excellent information on all the rare dementias.

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 a rare dementia and not often experienced 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 antisocial behaviour and a lack of empathy or concern for a previously loved spouse.

Carers sometimes find that their friends and family are unwilling to accept that there is anything wrong with the person with FTD, and do not take their concerns seriously.

Caregivers 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 in memory clinics or in GP surgeries, leading practitioners to believe that the patient has no dementia. Memory is relatively well preserved with FTD and a high MMSE score is not unusual.

Often social workers and others administering standard questionnaires for mental capacity, do not fully appreciate the nature of this disease and the lack of insight on the part of the person with FTD, and thus fail to realise that capacity may only be partial in certain situations such as finance, or personal safety.

What do we do?

We meet informally in the main bar of the Arundell Arms, Lifton, Devon, PL16 0AA approximately every 8 weeks for a shared lunch, shared experiences, and shared knowledge, support, laughter and occasional tears. We have experience of the range of emotions that follow a diagnosis of FTD, the behaviour stemming from FTD, and some strategies for management. So accounts of extreme behaviour neither surprise nor shock us.

Although we do not give advice as this is something only clinicians should do, we can offer support whilst waiting for a diagnosis of FTD, and following a diagnosis. If the diagnosis is something other than FTD we may be able to point you in the direction of more appropriate help.

What does it cost?

There is no fee, and no charge for attendance. We each pay for our own light lunch, usually a sandwich/panini and chips and beverages.

Is attendance at all meetings important?

Given the nature of FTD it is often not possible for all members to attend every meeting, nor is it necessary. In turn, one of the four Regional Facilitators (RF) will contact all members by email a few days in advance of a meeting to ascertain numbers for the Arundell Arms, so that a suitable table can be allocated to us in the main bar. 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 are experienced FTD Caregivers willing to give some time each week to support members. RFs attend the Rare Dementia Support Annual Regional Facilitators meeting each year in London to share information and receive updates.

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.