Diagnosis – To Tell or Not to tell

Members article

By Jane Verity © Dementia Care International

Once you notice that the person you care for is exhibiting some of the symptoms we call dementia, it is important that you obtain a thorough medical examination. This check up will establish if any underlying condition is treatable, for example: dehydration, urinary tract infection, depression or medication poisoning; all of which can result in symptoms of dementia. It will also help to identify any preventative measures that can be taken, for example if the symptoms are the result of a stroke.

If you are the supportive partner or carer of someone and you receive their diagnosis of dementia, you may have to decide whether to tell the person. To tell or not to tell is a highly ethical question. In western society, there is a strong push in favour of a person’s right to a diagnosis. While many may agree, it is also true that some do not wish to be told they have dementia or Alzheimer’s disease. It can be hard to know what is best sometimes with so many factors to consider.

In our opinion, very few people benefit from being told, ‘You have dementia!’ or ‘You have Alzheimer’s!’ Most find the diagnosis absolutely devastating and it can also begin to affect the person’s mood and ability to cope. The person may start to focus only on what he or she can’t do or remember. Once this happens, more often than not, this negative focus becomes a self-fulfilling prophecy.

If you are faced with the challenge of deciding what is best for someone in your care, we suggest the following ethical, respectful and simple answer to the diagnosis dilemma. This solution was offered at a large ethical discussion forum in Chicago.

Before any assessments take place – if possible – have an honest and sincere talk with the person and find out if he or she would prefer to know the diagnosis or not. This approach is simple yet takes all the guesswork out of the situation.

Points to keep in mind

Sometimes the person may be happy to go ahead with the assessment – and quite comfortable with you getting the results – however, does not wish to know him/herself.

For a person with dementia, the assessment process can be a very stressful experience. The entire focus is on what the person can no longer do. This can severely undermine the person’s self-esteem and leave him/her with feelings of failure.

If you do go ahead with an assessment, ensure that you are comfortable with the level of empathy and respect shown by the professional who is conducting the assessment. The relationship between the person carrying out the assessment and the person being assessed can often affect the results. If you are not happy, it is your right to ask for a different assessor.

Having established the underlying condition, you may find there is a strong push from professionals to continue with further assessment and investigations.

Before you proceed, ask yourself first:

  • What purpose will it serve when there are no cures?
  • Who will it benefit?
  • Will it improve or enhance the quality of life for the person I support?

These are important questions because many assessments can be incredibly stressful and only serve to highlight the person’s deficiencies.

People with dementia do not need or want to be faced with all the things that are not working. They need help to focus on their strengths and what they can do. So, please, think carefully first about the value of further assessment.

Note: If you need to apply for assistance in caring for the person with dementia, a formal assessment is required to qualify for government assistance (in Australia).