Objectives: To audit and evaluate the introduction of a novel support service for younger people with dementia, their families and the professionals caring for them.
Design: A retrospective review of all calls received by a telephone helpline over a 2-year period.
Setting: CANDID (Counselling and Diagnosis in Dementia) offers direct access, by telephone and e-mail, to specially trained nurse/counsellors who record the caller's query, provide emotional support and practical advice. In addition to general advice, clinical details are held for patients registered with the service so that the advice given can be tailored to the patient's specific need and routed via the general practitioner for action. Advice is reviewed by a consultant neurologist and psychiatrist.
Subject: Callers to the CANDID helpline, who made a total of 1,121 calls.
Main outcome measures: Details of the caller and of the patient they were caring for. Reason for calling and advice given to the caller
Results: Of the 1,121 calls received during the first 2 years of operation, 547 were 'registered' calls relating to 241 individual patients where more specific advice could be given through the GP. The remaining 574 'generic' calls were from members of the public and healthcare professionals who had heard about the service and were seeking information and advice. Reasons for calls were divided into three broad categories: general information; clinical advice; and advice on social issues. Among the registered callers, 50% of calls were for clinical advice. Letters were sent to GPs on 67 occasions; 48 (56%) provided information only for the GP, 16 (24%) advised a secondary referral and eight (12%) advised on the use of specific medication.
Conclusion: The service has become rapidly accepted and used by families of patients and members of the public. Healthcare professionals have made less use of the service than anticipated, but it is hoped that this will increased as information about the service becomes disseminated.