Introduction

This chapter draws on the experience of two clinical psychologists working in a specialist outpatient clinic for sufferers of frontotemporal dementia (FTD) and their carers, within the UK's National Health Service. The clinic was originally set up in Cambridge in 1997 by a consultant neurologist (JRH), psychiatrist and psychologist (Sinclair Lough), to serve the needs of all patients with a young onset dementia. Over the course of the first 2 years it became clear that within this broad group of patients those suffering from FTD and their carers had their own distinctive needs. Hence in 1999 a specialist clinic was formed. Sinclair Lough worked in this bimonthly clinic until July 2003 and Vanessa Garfoot joined the clinic in August 2003.

The clinic is held in the neurosciences department at Addenbrookes Hospital Cambridge, an inescapably medical environment. The FTD clinic is, however, multidisciplinary and the clinical psychologist operates from a Rogerian position of “unconditional positive regard” for the family and the sufferer. The clinic is organised by a research nurse who undertakes the initial contacts with patients and the families and orientates them to the workings of the clinic. This initial contact is extremely important as it sets the tone for the experience of attending the clinic and allows individuals to express their concerns or worries before they arrive (e.g. will someone be with my husband as he has a tendency to wander?). Transport and accommodation is also facilitated. The carers are also sent the Cambridge Behavioural Inventory (see Appendix 1) to complete at home and bring to the clinic with them as a brief record of the type and severity of behavioural symptoms, which are currently problematic. This, although a paper and pencil exercise, also helps people to think through the types of problems and prepares them for discussing them at the clinic.

Unlike the development of memory clinics for those suffering from Alzheimer's disease precipitated by the arrival of anticholinesterase medication, the FTD clinic has a more psychosocial rather than pharmacological focus. Indeed in addition to there being no drug available to slow the progression of FTD there is little by way of pharmacological intervention to act upon symptoms (Chow, 2005). The main tasks for the psychologist in the clinic are summarised in Table 10.1.