To tell or not to tell
Whether or not to tell a person with dementia about
their diagnosis is likely to be a difficult and emotional issue for
all concerned. Improved diagnostic techniques mean that
increasingly dementia is being diagnosed at an early stage of the
illness. This means that people with dementia are more likely to be
able to understand the implications of the disease than has been
the case in the past.
Preparing for the diagnosis
Wherever possible, the person undergoing the assessment for dementia should be allowed to decide if they want to know if the diagnosis is confirmed. In general, if a person is aware that they are going for a diagnosis they will be able to make that choice. Some doctors will always tell their patient the outcome of the diagnosis, so it is important to discuss this issue prior to proceeding with the diagnosis.
If the person is not in a position to understand the implications of receiving a diagnosis of dementia, you need to make some judgments based on your understanding of what the person's wishes would be.
• What would their choices have been if they were able to understand the implications?
• Have they ever given an indication at some time in the past as to what they would have preferred in a similar circumstance?
This is an important and difficult decision to make on behalf of
another person. Talking to family and friends, as well as to the
doctor or specialist beforehand may help.
To tell or not to tell?
There are many reasons for telling a person with dementia about their condition:-
• It is now widely accepted that people have a right to know any medical information about themselves, if this is not to their detriment
• Many people are already aware that something is wrong. The diagnosis of dementia can come as a relief, as they now know what is causing their problems
• Knowing the diagnosis can help a person understand their situation, and make important plans for the future, particularly about legal and financial matters
• Knowing about the disease allows for an honest and open discussion of the experience of dementia between family and friends
• Access to information, support and new treatments can be made
easier when the person knows about their condition
However, there are a number of reasons sometimes given for not sharing the diagnosis with a person with dementia:-
• The very nature of the dementia changes the ability to understand and remember information. It can also affect people's abilities to deal with emotional issues. The person may not understand the diagnosis, or may not remember it
• It may be felt that the person will become very distressed by
the discussion. Families naturally feel very protective of their
relative and wish to spare them the trauma
It is generally recommended that a person with dementia be told of their diagnosis. However, a person has a right not to know their diagnosis if that is their clear and informed preference.
How to share the diagnosis
Sharing the initial news of the diagnosis may come from any one of a number of people. The doctor or specialist, assessment team or members of the family may talk to the person about the diagnosis either individually or as a group. You might like to consider having someone present at the time of telling to provide extra support. Planning ahead about the best way to share the diagnosis will make it easier. As individual responses will be different, careful consideration must be given to every situation.
However, there are some considerations that will be generally helpful when talking to a person about their diagnosis:-
• Ensure that the setting is quiet and without competing noise and distractions
• Speak slowly, clearly and directly to the person
• Give one message at a time
• Allow time for the person to absorb the information and to form questions. Information may need to be added later
• Written information about dementia can be helpful to take away and provides a helpful reference.
• Ensure that someone is available to support the person after
being told about the diagnosis
What information to share
As a general guideline a number of things will need to be explained. These will include:-
• An explanation why the symptoms are occurring
• A discussion of the particular form of dementia in terms that are appropriate to the person's level of understanding
• Any possible treatment for symptoms
• The specialised services and support programmes that are
available for people with dementia
Informing a person that they have dementia is a serious matter, which needs to be handled with great sensitivity, calmness and dignity. It can be a very stressful time for everyone. Don't forget to look after yourself.