Discussing a diagnosis of dementia

Healthcare professionals with specialist expertise in dementia, GPs and the wider multidisciplinary team may all be involved in discussing and providing a diagnosis of dementia. All healthcare professionals involved should be competent in discussing a diagnosis of dementia and knowledgeable about dementia.

Carers should be encouraged to attend, and be included as active participants in, dementia diagnosis discussions. Their role in supporting person with dementia and the healthcare professional by assisting with communication and recall of the discussion should be acknowledged.

The diagnosis of dementia should be made by a suitably trained specialist with access to the results of relevant multimodal assessments including collateral history of the person with suspected dementia (eg about symptom progression from family and carers), functional assessment (by occupational therapy, speech and language therapy, psychology, liaison psychiatry, from social work records etc) and any investigations (eg imaging).

Early discussion of a diagnosis of dementia should be considered to help timely access to support and services.

Healthcare professionals should consider discussing a dementia diagnosis in stages, over more than one session or as an ongoing process, allowing time for the information to be absorbed. Timings of discussions should be tailored to the needs of the person with dementia and their carer(s).

When discussing a dementia diagnosis, take a person-centred approach considering:

• whether the person with dementia has sufficiently processed the diagnosis and accepted the changes that are happening to them
• that acceptance of a diagnosis and changes that are happening is individualised
• the wellbeing of the person and that this discussion could have a detrimental effect on them.

People with undiagnosed dementia may first come into contact with healthcare professionals during an acute hospital admission or with an episode of delirium. A diagnosis should not be delayed when it can be made by an expert with support from multimodal assessments and collateral history, even if there is co-existing delirium.

Healthcare professionals should ensure that when a diagnosis is provided, whatever the stage of dementia or the setting, the person with dementia and their carer(s) are informed about postdiagnostic support and services.

GPs or professionals referring a person with suspected dementia to secondary care (eg a memory clinic) should make it clear to the person that they may have dementia so that they are prepared for a potential diagnosis of dementia.

Healthcare professionals should consider offering information or prediagnostic counselling (a session that takes place in advance of a meeting to inform a person of a dementia diagnosis) for people with dementia and their carers to:

• discuss and address the beliefs, expectations and potential misconceptions of people with dementia and their carers
• help them better absorb and understand the information provided to them.

Healthcare professionals should ensure that people with dementia and their carers have access to information before, during and after receiving a diagnosis of dementia. This includes information about memory assessments and the medical, interpersonal and behavioural aspects of dementia. Written information should be provided at the meeting to discuss diagnosis.

Healthcare professionals providing a diagnosis of dementia should do so in a clear, sensitive and empathetic manner, being aware of the differing communication needs of the person with dementia and their carer(s) and provide the opportunity for questions to be asked.

Healthcare professionals should ensure that the discussion of a diagnosis of dementia should include positive and hopeful, yet realistic, messages; information on prognosis and sources of support; information on wellbeing and how the person with dementia can continue with their life, maintain their sense of self and accept their identity as someone with dementia.

Healthcare professionals should be aware of the increased risk of suicide in people with dementia younger than 65 within 3 months of a diagnosis.

Encourage the person with dementia and their carer(s) to ask questions about the dementia diagnosis and allow sufficient time for answering. A checklist covering the information people may need can be found in the checklist for provision of information.

Encourage the person with dementia and their carer(s) to discuss postdiagnosis support and services.

Provide a positive message about living well with a terminal, life-changing diagnosis of dementia.

Discuss the importance of making plans for the person’s financial and personal welfare as soon as possible. A checklist covering the information people may need can be found in the checklist for provision of information.