Our podcast guest today is Maxine Linnell. Maxine first tells us about her fascinating career, including working as psychotherapist for 30 years, alongside many other interesting teaching and facilitating positions. She trained in humanistic and Buddhist psychotherapy, and specialised in working with trauma. In her 60s she fulfilled her childhood dream: her first book was published.

Maxine talks about her close friend Kate, who died with Alzheimer’s during lockdown. When she recognised some changes in her own mind, she was determined to get a diagnosis quickly. She describes what happened to prompt this decision. Luckily, she got an appointment with a consultant neurologist. That was incredibly helpful: he was very respectful, he was honest, but he didn’t write her off. This consultant’s attitude was all about helping people to maintain their lives and carry on as normally as possible.

She talks about how scary it was after that initial diagnosis. She describes how she spent time preparing for what might come, and how she began to withdraw and lose her confidence about what she could do.

But then she explains how she made her big decision that she wasn’t going to withdraw from life. She describes how she continues to write, and how she has become a dementia advocate and activist. She shares how dementia has led her to be more outspoken, less diplomatic and to use writing to help dispel the myths people believe around dementia.

Maxine also shares her thoughts on the word Dementia and Alzheimer’s – and how she doesn’t like the way many people treat those with dementia. She finds it very helpful to be part of the dementia community where she meets other people who have dementia. But she thinks that everybody in society should treat each other with respect and care.

She describes how she has organised her world to live with dementia: she uses Alexa to help her remember what she has planned for each day, she has learned to recognise how some of her senses have changed, and sometimes she’s able to keep calm when something might scare her. But most importantly, she says understanding what’s happening enables her to make choices.

Hearing Maxine talk about her life with dementia is both moving and inspiring, and leads you to her vision: rather than think that everything someone living with dementia feels is a symptom of dementia, it’s important to listen deeply, to empathise and respond.

If you want to understand more about how Maxine lives with a diagnosis of dementia, we would encourage you to read her blog and poems on her website https://www.maxinelinnell.com/

You could also read Knowledge is Power, published by Innovations in Dementia. This booklet was written by people living with dementia, including Maxine. It is for people living with dementia, to support you in living as well as you can.

Dr Carol Sargent: https://sargentgroup.consulting/

Dr Tom Adler: https://getbide.com/