P1–428: Dementia diagnosis disclosure: Results of patient and caregiver perspectives

Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

“…Exploring the patient's perspective also enables explanations to be linked to their personal experience which may facilitate understanding [ 4 , 32 ]. Although some behaviours, such as holding the meeting in an appropriate physical setting and the presence of professionals already known to the person with dementia and family, may seem self-evident, their importance has also been documented in previous studies [ 29 , 32 , 41 ].…”

“…Our eight categories of behaviours relating to diagnostic disclosure are consistent with recent studies of disclosure in dementia. The need for pre-diagnostic counselling and preparation for disclosure has been emphasised [ 29 - 31 , 36 ]. While some people with dementia and family members anticipate their diagnosis [ 2 ] others have not previously considered dementia as a possible cause for their problems [ 5 , 40 ].…”

“…A wide range of types and intensity of emotional reactions to a diagnosis of dementia have been reported [ 29 , 35 , 36 ]. Professionals need be prepared to manage a range of emotional responses and provide space for these to be expressed [ 29 , 32 ]. Since some of the distress caused by a diagnosis of dementia relates to the negative attitudes and preconceptions about the illness, it is also important to explore these and to provide a more balanced view [ 45 ].…”

“…These potentially negative consequences are offset by a range of positive consequences and many people with dementia are able to cope with their diagnosis particularly when adequate support is available [ 24 - 27 ]. Furthermore, the majority of people to whom a diagnosis of dementia was disclosed have positive attitudes to disclosure [ 5 , 28 , 29 ].…”

Patients' and carers' views on communication and information provision when undergoing assessments in memory services

“…Further research directly observing practice, and more specifically what information is relayed, would be valuable. 12 In addition, we only explored the information needs of people with dementia at the start of the dementia trajectory. Research exploring carers' views highlights that information needs often change over time.…”