Don’t say people with dementia “suffer”, asks best-selling author

Wendy Mitchell, who has written a best-selling book about living with dementia, says if you tell people with dementia that they ‘suffer’, it is more difficult for them to find hope, adapt, and find fulfilling new ways to live their life.

Ms Mitchell spoke earlier this week at the Hay Festival in the UK, about what it is like to live with dementia.

Ms Mitchell was diagnosed four years ago at the age of 58 with young onset Alzeimer’s, and was shocked by the lack of awareness about the condition.

Even at the NHS, where she had worked for 20 years, awareness was low, and Ms Mitchell was forced to leave her job soon after her diagnosis.

Ms Mitchell wrote Somebody That I Used to Know to help raise awareness about the condition, and to encourage others to see that there is life after diagnosis. The book spent five weeks at the top of the best-seller list, and was turned into a movie starring Julianne Moore.

In her talk at the Hay Festival, Ms Mitchell said the language doctors use is particularly important in helping people who have been diagnosed with dementia to cope with the news.

“When you are diagnosed with dementia, it is seen as the end. My doctor delivered the diagnosis with: ‘We’re very sorry, there’s nothing that we can do.” Such negative words can “make or break someone” she said.

Ms Mitchell suggested that doctor’s instead take the approach that the person will have to “adapt” to a “new way of living” to encourage them to believe they can still live fulfilling lives.

“Then at least you would leave the building with a little bit of hope – and it’s the hope that is missing at the moment,” she said.

Ms Mitchell has developed her own innovations to help her manage her life. She writes herself post-it notes to help her remember things. She has removed her kitchen door so she can see into the next room, and doesn’t forget what’s there. She has placed photographs on the doors of her kitchen cupboards so she knows what’s inside. She has a bright pink bicycle so she knows which one is her’s.

The NHS and Ms Mitchell have developed a toolkit to help the organisation develop better ways of thinking about dementia.

“I never want anyone else with dementia to be told that they are of no use to you any more,” she said.

“We all had talents the day we got a diagnosis of dementia, we don’t suddenly lose those talents overnight,” she said.

She said sometimes staff in nursing homes think people who have dementia are no longer able to dress themselves. “In fact they can, they just need more time,” said Ms Mitchell.

Ms Mitchell was interviewed for the event by The Guardian’s Decca Aiktenhead, who asked what she would remember from the Hay Festival event. “It’s the feelings I remember,” Ms Mitchell replied, as the audience rose to a standing ovation.