Objectives: To determine and prioritise what information dementia caregivers wish to know at the time of diagnosis and later on in the illness, and in what form this information should be presented.
Method: 100 carers were recruited from community mental health teams (CMHT) and a memory clinic (MC). A semi-structured Carer Interview was administered covering possible symptoms and management.
Results: Carers requested as much information as possible. There was no significant difference between CMHTs and the MC. After carers prioritised the information they wished to receive, we proposed a 'rule of threes'. At diagnosis, carers want information about what dementia is, medications available and behavioural and psychiatric symptoms of dementia. In an early follow-up appointment, they want information about services, the course of the illness and what to do in a crisis. In a later follow-up appointment, they want information about support groups, benefits, and financial and legal issues. At a later stage, they want information about psychological therapies, the effects of the illness on carers and complementary treatments. Most carers wish to receive information from a health professional, backed up by written information.
Conclusions: The 'rule of threes' enables health professionals to make informed decisions about primacy of information and strategies to prevent carers becoming overloaded. Information should also be provided in written form and from support groups.
Copyright 2003 John Wiley & Sons, Ltd.