Disclosure of diagnosis
Diagnosis of dementia
"When I was told the diagnosis, I felt as if a veil had been lifted and I could see everything more clearly. I understood that I had a medical condition. I was not going mad." (Jill)
"When I finally managed to tell my husband that he had dementia, he took my hand, smiled and told me not to worry. He knew that people had been hiding something from him and was glad that I had told him." (Maggie)
Apart from worrying about possible negative consequences of sharing the diagnosis with the person with dementia, some carers want to tell the person with dementia but just don’t know how to go about it. There is no perfect way to do this as each person is different. Some people would prefer to be told privately on a one-to-one basis, whereas others might find it more reassuring to be told in the presence of their family or a trusted friend. People with dementia who already know the diagnosis may also be hesitant about telling other people about it. They may fear their reaction or want to avoid making them feel uncomfortable or awkward.
Another possibility is to ask the doctor to disclose the diagnosis to the person with dementia. You could perhaps accompany the person with dementia as your support may be needed at some point. The advantage of asking a doctor to disclose the diagnosis is that he/she can inform the person with dementia of the diagnosis, answer questions and also give information about the prognosis, treatment, as well as available support and services.
Some people may be so shocked or disturbed by the diagnosis that they cannot take in all the information that they are being given. They are simply not capable of thinking clearly. For this reason, it might be beneficial to have a follow-up meeting once the person has had time to absorb the diagnosis. For this reason too, driving home after the diagnosis or subsequent meetings could be dangerous.
For the person with dementia
Having been informed of the diagnosis, you are likely to have a lot of questions and may need to talk to someone. This is why a follow up meeting after the diagnosis can be useful.
- Make sure that you get answers to any questions you have. You could contact your doctor as well as your local Alzheimer association.
- You could also discuss your feelings with your family.
- If you feel uneasy about asking for information yourself, take someone with you for moral support.
- Prepare your questions before the consultation.
- If it helps, make a written list.
- Ask everything you want to know, no matter how trivial it may seem.
- Ask someone to make a note of the answers so that you can refer back later.
- Don’t feel intimidated by medical professionals. You are entitled to ask for information and it is their job to provide it.
- If you do talk about your diagnosis to other people, be honest about how you feel about it.
For the carer
If you have already been informed of the diagnosis and want to share it with the person with dementia, it might help to bear in mind the following points:
- Try to be sensitive to the person’s needs.
- Make sure that the person would not object to being informed.
- Try to bear in mind what the person knows and feels about dementia so as to better anticipate how they might react to the information.
- Try to tailor the information you give to the person’s ability to understand based on their level of education and the stage of the disease.
- Find a nice private place (perhaps a pleasant room with comfortable chairs and even flowers).
- Try to make sure that the person is in the right frame of mind (i.e. not stressed, preoccupied or busy doing something else).
- Take the necessary time to explain what you know. It might be necessary to explain everything over a period of time and to go back over the information several times.
- Be prepared for the person with dementia to ask you questions. If you can’t answer them, make a note of them and try to find out afterwards. You could maybe consider making an appointment together to see your doctor.
- The information on planning a consultation (please see the previous box for the person with dementia) may also be relevant to you.
Last Updated: Friday 25 September 2009