Making sure healthcare students understand the realities of life with dementia

Susan had a working-class background and was the only girl in her class to pass the 11+ exam. She did well at high school and the teachers had her down for Oxbridge. She then went to art school and met me. 

We moved to Dublin once I qualified as an architect and our children Ro and Becket were born. Following this we moved back from Ireland, bought a thatched cottage where we led the good life, and our third child, Euan, was born.

We returned to Eastbourne and Susan enrolled at Sussex University as a mature student.

She’s done lots of projects on widening opportunities for women and empowering them to return to work and learn new skills.

Time for Dementia

We got involved with Time for Dementia because Susan’s been in education most of her life and wanted to use her diagnosis to help others. Through the programme, we talk to trainee doctors, nurses and paramedics. 

They have asked if Susan’s diagnosis could have been improved. It couldn’t have been worse, to be absolutely honest. 

Susan’s symptoms started 13 or 14 years ago, when posterior cortical atrophy (PCA) – a form of atypical Alzheimer’s disease – was hardly known. Because it presents as a sight problem, we were sent to hospital ophthalmologists. They did lots of tests, gave Susan refracted lenses and different coloured paper to help with reading and writing. 

That went on for about two years until someone eventually twigged that it might be neurological. 

Standing up

I often feel like standing up – because people stare at you in a restaurant or on a train – and saying, ‘Right I’m going to give you a five-minute lecture on PCA.’ It’s brain blindness, not eye blindness. Susan’s eyes are healthy, it’s actually a part of the brain which is having difficulty processing the images.

I’ve found that doctors were either not sympathetic at all or absolutely brilliant. The person giving the diagnosis said, ‘There’s no cure, there’s no treatment,’ and it was as though the sky had fallen. Then they did more tests and Susan burst into tears. Susan has always been worried about losing her sight because her dad lost his sight. 

One minute we were a fairly normal couple enjoying our retirement. The next minute, we were a person with PCA and a carer.

That was very difficult, and I’ve told the Time for Dementia students that if they’ve got to give bad news, to do it gently and slowly.

Future professionals

We’ve talked to around 12 students and they’ve all been brilliant. Susan likes still being in education and we like chatting to the young people about their lives. They certainly know all about PCA by the time we’ve had two or three sessions.

The two students we meet at the moment are really interesting and intelligent. It gives me hope that PCA diagnosis will be better in the future.