Remaining positive with a rarer form of dementia

Anne’s sitting in front of a large window to her garden – one she used to enjoy spending many hours tending.

She lives with Tony, her husband of 50 years, and their springer spaniel.

While life has certainly changed since Anne’s diagnosis with a kind of atypical Alzheimer’s disease, they’re determined to maintain as normal a life as possible.

Fond memories 

Anne remembers a close-knit family life in East London with her nine siblings. Her family wasn’t well off, but she has fond memories. 

‘We lived in a small house,’ Anne says, ‘but we were very happy.

I remember Mum running around telling us off. We were all very close.

Anne worked as a nurse at a large London hospital, following in the footsteps of family members who had also worked in healthcare. 

When I was at school, I wanted to be a nurse, and when I left at 16, that’s what I did.

Anne was once recognised as Nurse of the Year. ‘I had so much in me to give,’ she says.

‘I didn’t expect to get Nurse of the Year, but I loved my job and colleagues.’ 

‘She was a natural,’ says Tony, ‘especially around children. It was like her calling.’

Life together

Anne met Tony at a party in 1971, and she says, ‘I remember he tried to impress me!’

‘I got the invite along with some male friends,’ says Tony, ‘and we went to meet all the nurses. 

‘Anne stood out because the party was for her. I offered to help with some of the drinks because she seemed to need help.

We continued to go out regularly, and a year later to the day we were married! 

They had three children, and Anne became a nursery nurse. She later worked as a senior youth leader, supporting children and young adults. 

‘She enjoyed helping young people,’ Tony says.  ‘And telling them off!’ adds Anne. 

Cutbacks meant that Anne had to leave this job, but her gardening hobby made working at a garden centre a natural next step. ‘It was loads of fun,’ she says. 

While there, Anne was also offered a more unusual job. A tailor friend had a royal warrant to make buttons for the then Prince Charles.

Anne helped mount and engrave the buttons for around 10 years. 

I enjoyed doing it and it was from home, so didn’t really get in the way of anything else.

Not quite right 

Anne and Tony moved to Deal, in Kent, a few years ago. This was partly due to Anne feeling unsettled and because they have family in the area. 

'Anne had been on holiday earlier,' Tony says. 

The person she was with turned to me and said, “Your Anne isn’t quite right…”

Despite the change of scenery, Anne was experiencing problems like low mood and difficulties in reading and writing. Her GP prescribed Anne antidepressants.

By talking to others and observing Anne’s difficulties, Tony realised her symptoms might not be depression. 

I didn’t appreciate it at the time – I just thought some of the symptoms were old age or Anne being contrary.

PCA diagnosis 

Tony asked the GP to reassess Anne’s condition. She was referred for memory and thinking tests.

Around a year after originally going to the doctor, she was diagnosed with posterior cortical atrophy (PCA). 

People with PCA can experience problems with vision, recognising faces and objects, literacy and numeracy.

They can later go on to develop symptoms more typical of Alzheimer’ disease, like memory loss and confusion.

We are in no shape or form criticising our GP for not picking it up.

‘I quite understand that. They are incredibly supportive and have been there for us ever since.’

Changing routines 

‘I can’t put it into words,’ Anne says when asked about her symptoms.

Her condition affects the part of the brain that interprets visual information from the eyes, making everyday tasks and activities difficult or impossible. 

Anne used to take care of the housework but now finds using things like the washing machine and taps difficult.

Going out to eat must be planned because Anne finds it easier to eat with her hands. She can no longer read books or write letters and cards, which she used to enjoy. 

'It’s turned our lives upside-down really,' Tony says.

Our roles have changed. When it came to things like washing and housework, she was doing it all. I find it challenging.

Tony also explains how the condition affected Anne’s hobby. 

‘It’s a perception of where things are. So, if Anne’s trying to trim a tree or pick some flowers, where she thinks the flowers are is not where they are.

Anne still loves the garden even if she can’t do the gardening.

'On a sunny day we’ll sit on the patio and enjoy the garden with our dog.’

Supporting others 

Anne attends community groups with Tony, and she’s keen to provide peer support. 

‘There’s a lot of people out there that have this and think, “Oh God, what do I do now?”’ she says. 

It’s hard when you get to the stage I’m at. If we can help anyone really, it’s a good thing.

‘We try and get involved with the community – groups for pensioners and people with dementia,’ Tony says. ‘As a result of that, we meet other people in similar situations. 

‘We try to see and support people whose husband or wife has got this condition and they’re just devastated by it.

'Anything we can do to support other people is worth doing.'

Anne and Tony are also helping to educate the next generation of healthcare professionals.

They take part in the Society’s Time for Dementia programme, which pairs people affected by dementia with students.

‘When we went to the GP, they didn’t recognise the symptoms – and I was guilty of it too,’ Tony says.

People have an awareness of Anne’s condition, but I don’t think they’re aware of PCA as a type of dementia and how it affects people.

'We felt that if we could tell them what to watch out for, it may be better in the future.'