Receiving a diagnosis
This page explains what to expect from a dementia diagnosis, how it might be delivered and what happens afterwards.
What happens during a diagnosis?
At the end of a consultation the doctor will explain if they can make any tentative diagnosis based on the information they have so far. When all the test results are known, a separate appointment will usually be made for the consultant, and often other professionals in the team, to give the final diagnosis. Very occasionally, the consultant will send a report to the person's GP, who will then give the diagnosis.
A diagnosis of dementia should be communicated sensitively but honestly, in a way that is tailored to the needs of the individual. The person being assessed has the right to be told their diagnosis and should be asked if they wish to know the outcome. (Very occasionally, a person chooses not to know; this is their right too.) If relevant, the doctor should also ask the person if they are happy for the person attending with them to be told, although this question should already have been raised in any pre-diagnostic counselling. It is usually in everyone's interests for the diagnosis to be shared with those close to the person.
Why does a diagnosis matter?
Find out how a professional diagnosis can help people to access support and live well with dementia.
Occasionally the doctor will decide not to tell the person with dementia their diagnosis. It may be that the doctor thinks that the person would not understand the diagnosis, perhaps because the dementia is at a late stage. Or the doctor may feel that the person would find this knowledge too distressing. For example, they may be struggling with a very serious illness, have had a recent bereavement, or already been very upset by the assessment process so far. The doctor should discuss what is in the person's best interests with anyone supporting the person.
Doctors differ in how they communicate a diagnosis of dementia and the words they use. Some doctors will refer to 'memory problems' instead of using the word 'dementia'. What is important is that the doctor uses language that the person understands and takes things at a pace that works for them. Professionals should answer any questions the person has in a sensitive but honest and straightforward way.
Following a diagnosis of dementia there is lot to adjust to and a great deal of information to take in. The final diagnosis meeting will usually cover how the dementia is likely to progress and any treatments (drug or non-drug) as part of a care plan.
Most memory services also offer sessions, running for several weeks after diagnosis, at which the person and those close to them can talk through the next steps in more detail and receive further written information. These sessions usually cover medication, living well, driving, benefits, local support services, planning ahead and more.
Once a diagnosis of dementia is confirmed, any medication has been started, and any post-diagnostic sessions have been completed, the person will generally be discharged from the memory service back to their GP. (An exception may be that there is a need for ongoing specialist support for specific symptoms or behaviours.)
As the dementia progresses, the GP may refer the person with dementia back to a specialist for help in assessing changes, and for advice on ways to deal with certain difficulties such as changes in behaviour. The GP remains responsible for the general health of the person with dementia.
Prescription of drugs for Alzheimer's disease will be started by the specialist and then routine prescribing will usually transfer to the GP. A review of these drugs is generally carried out every six months by the specialist or GP.
Someone diagnosed with dementia can seek support from their GP, or local support groups, if they feel they need it.