Sir Terry Pratchett

After some false diagnoses, Terry was diagnosed in 2007 with a rare form of early-onset dementia called Posterior Cortical Atrophy, known as PCA. He started having problems reading and writing. Terry published several novels after his diagnosis which he created by dictating to his assistant. In 2014 he reluctantly cancelled engagements and stopped creative writing later that year. Terry died in March 2015.

Initially, Terry was devastated. He cancelled work appointments but then realised that he was doing OK so decided to carry on with his writing and attending conventions.

Terry felt fortunate that his success as an author meant that he could afford to pay helpers. Although this eased some things, it could not change the diagnosis or stop the decline.

He appeared in television documentaries about living with dementia. Terry firmly believed in the right to assisted death for people with terminal illness.

Terry explained that his problems were immediate rather than forgetfulness. And was amazed how he could remember details of jokes and songs from decades ago.

Attending a meeting of people living with PCA, Terry found it reassuring that others understood what it was like. He did not feel that he was a person who usually benefitted from groups and said that resources like this website would be a great help to people to hear about others going through the same experiences.

Terry would like to be remembered as ‘a guy who wrote some books that didn’t do much harm, not the author who died with Alzheimer’s.’

Sir Terry Pratchett discusses making advance decisions.

Terry found he had to work harder to remember things.

Terry found it helpful to know there are other people ‘in the same boat’.

After diagnosis, Terry cancelled plans but then realised there was a lot to look forward to.

Having PCA made Terry’s diagnosis tricky.

Terry describes his dementia as an embuggerance.

Memories from long ago are clear for Terry.

PCA affects Terry’s vision and spatial awareness.