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Sharing Mom’s dementia diagnosis

When Mom got a diagnosis of dementia, she was not able to understand her diagnosis. While I didn’t specifically ask her permission to speak with her friends, I firmly believe she would have wanted them to know, had she still been able to understand and express that. Our family always spoke openly about a range of topics that some people find hard to talk about, like death, euthanasia and our values. I thought it was important to talk to her friends and acquaintances, explain the changes in behaviour, and ask them to continue to be her friends.

Mom had close friends, many acquaintances, and neighbours who were longstanding. She had been a widow for many years, and was always involved in activities, like art, lunches, and clubs. She enjoyed being involved and relished company of all ages. We felt it was important to try to maintain as much contact as we could with her friends. We were lucky that she remained mainly happy, and loved seeing people and talking, even when conversations were so hard to follow.

Speaking with people about Mom’s dementia was not easy. Some of the friends were already aware, as they had previous experience with dementia. However, each journey with dementia is different, and the changes are varied. Mom had good moments where she was easy to understand, and poorer moments when one thought dominated. I thought it was important to explain this to her friends.

Things that helped when telling Mom’s friends:

  • Talk in a familiar place, I went to a small coffee shop, which was quiet.
  • Don’t hurry the conversation, as some friends wanted to ask questions, and some were visibly upset.
  • I also told them what they could do -that Mom still enjoyed their company, but maybe shorter visits were easier all around.
  • Most of all, I told them Mom was still the same person, but with some changes in behaviour. She recognized people, not always their names, and not always in their current circumstances. She did tend to talk about the past, even about people who had died a while ago.

These conversations were important for the friends to understand their role as friends was still so valuable in maintaining a sense of continuity for Mom. Her friends were fantastic, and kept spending time with her which we know she enjoyed.

Coming to terms with dementia
Sharing the diagnosis helps others to understand and helps you, and the person with dementia, get the support you need. Read this article with strategies for how to share the diagnosis: 2.8 Sharing the diagnosis with family and friends.