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Learning you Have Dementia – How Can it be Done Better?

Thursday, January 27th, 2022

You may have a sense of something not being quite right. Your family and friends may suspect something too. Is it simply old age and a bit of forgetfulness – or is it something more? The decision to get checked out is a big one. A research team from the UK, recently published a review investigating the experience of receiving, and delivering, a diagnosis of dementia[1].

A Systematic Review

The researchers identified 52 studies published between 2008 and early 2020, that reported on the disclosure of a dementia diagnosis. Around half of the studies were qualitative or narrative pieces, and included the perspectives of people with dementia, carers and health care professionals. The studies were conducted out of clinic and community settings, with the majority from the UK and USA. Similar ideas and issues across the studies were grouped into themes. These included the communication and timing of receiving a diagnosis, attitudes towards the disclosure, truth telling versus deception, and the emotional impact on the people involved.

An Emotional Event

The findings suggested that the disclosure of a dementia diagnosis, although often delayed, is now common practice. Carers described receiving a diagnosis as helpful in organising treatment.  However, overall, the process was described as negative. For people with dementia, typical reactions to receiving a diagnosis were ones of sadness, shock, anxiety, or relief. Meanwhile carers were reported to be left feeling uncertain about the future. Practitioners described feeling fearful about being the “bearer of bad news”. Several studies supported implementing explicit terms such as “Alzheimer’s Disease”, yet found practitioners likely used ambiguous or vague language.

Finding the Balance between Honesty and Hope

The paper highlighted several recommendations for improving practice. Practitioners felt they would benefit from more guidance and training in communicating a diagnosis. Emotional rapport could also be better used to lessen the negative impact on people with dementia; for example, the GP delivering the diagnosis rather than the specialist. Pre-diagnostic counselling and follow-up appointments could also enable more realistic and hopeful discussions.

A Difficult but Important Task

Being given clear information about a dementia diagnosis is important. This is a review of diverse studies. The findings may not be wholly generalisable.  However, the paper helps to unpack some of the complexity surrounding the diagnostic process, and has offered ideas of how to better the services and support for people with dementia in the early stages of a diagnosis.