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The importance of informing the person about the diagnosis

After diagnosis - What next?

"I knew something was wrong but couldn’t work out what it was. When the doctor told me I had dementia, it was like someone had just put the final piece of the jigsaw in place." (Harry)

"I felt that it was important for Mary to be told the diagnosis as we have always been honest with each other. Besides, she is a responsible adult and has a right to know." (Joe)

Everyone has a right to know their diagnosis and people with dementia are no exception. Indeed, it is demeaning not to inform them. Sharing the diagnosis may put an end to a period of confusion and even bring some relief. For some people, it helps them to make sense of what they have been experiencing and to know that they are not “going mad”. Furthermore, sharing the diagnosis may reinforce an existing relationship based on trust and honesty. There is a risk in not informing people with dementia of the diagnosis that they might find out accidentally e.g. by reading the notice on a packet of tablets.

Provided that the disease is at a sufficiently early stage, informing people with dementia of the diagnosis may also enable or help them to:

  • express their autonomy
  • understand changes within themselves
  • prepare themselves spiritually
  • make the most of their lives e.g. go on holiday or travel
  • discuss the illness and inform themselves about it
  • access support, state benefits and services more easily
  • think more actively about coping strategies
  • understand the necessity of certain precautions (e.g. with regard to driving and/or the use of certain machinery)
  • take care of financial, business and legal matters
  • personally consent to treatment, medication or care
  • plan for and communicate end-of-life decisions
  • decide whether they want to participate in research
  • participate actively in Alzheimer support groups

Although the vast majority of people say that they would like to be informed of the diagnosis if they had dementia, some would prefer that their relative or friend was not informed. The main reason for this is that they want to avoid causing unnecessary stress. Whilst it is true that doctors need to be cautious in the case of people who have suicidal thoughts, in most cases the advantages of disclosing the diagnosis outweigh the disadvantages.

Of course, nobody should be forced to hear the diagnosis if it is clear that they would prefer not to be informed. They also have the right for the diagnosis to remain private. Such rights should be respected. Some people genuinely prefer not to know and make this clear. Doctors and carers need to be sensitive to such issues and make sure that they respect each person’s wishes.



Last Updated: Friday 11 September 2009