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Sharing Mum’s dementia diagnosis

It was important to talk to her friends and acquaintances, explain the changes in behaviour, and ask them to continue to be her friends.

When Mum 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.

Mum 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 Mum’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. Mum 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 Mum’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 Mum still enjoyed their company, but maybe shorter visits were easier all around.
  • Most of all, I told them Mum was still the same person, but with some changes in behaviour. She recognised 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 Mum. Her friends were fantastic, and kept spending time with her which we know she enjoyed.

 

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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 these pages with strategies about sharing the diagnosis: