Staying active in the community following a dementia diagnosis

When Zambia gained independence in 1964, less than 1% of the population had completed primary education. 

Born in Zambia under British rule, Nellie was able to excel at school thanks in part to her father’s job as a headmaster. 

‘My father wanted me to be educated so that, when I grew up, I could get a job,’ Nellie says. 

All the lessons were in English, even though not all pupils knew the language. 

‘When I went to school, the boys in class hated me,’ Nellie says. 

“How come she understands English?” they would say. “She must have been to school before and failed.” But no – it was just that my father had taught me!

Supporting family

A stroke forced Nellie’s father to quit his job as headmaster. 

‘It was a bad stroke,’ Nellie says, ‘but he continued working to support us children.

He had to go out buying and selling things because he went from being headmaster to nothing.

Despite the difficulties facing her family, Nellie secured a secondary school place, later attending boarding school. 

‘It was one of the few secondary schools for African girls in Zambia at that time,’ she says. ‘My aunties and uncles were supporting my mother when my father was in hospital.’

Nellie then became a primary school teacher. 

I thought, “I will be the one supporting the family now.”

Nellie made it her mission to get her relatives school places and she was very successful – one has since become a government minister.

To the city

Nellie later qualified as a secondary school home economics teacher.

Her school in Kalabo was one of the remotest in Zambia, cut off for part of the year by the Zambezi Floodplain. 

Nellie then studied in the UK and, when she returned, persuaded her employer to transfer her to a secondary school in the Copperbelt province. 

‘I told them, “I’ve had enough punishment, I’ve been in a rural school for three years,”’ Nellie says. 

They looked at me and said, “She can talk, this woman!” But I had to stand up for myself.

Peripatetic life

Around this time, Nellie met her husband John, a university lecturer. 

‘He looked at me and then invited me to go out,’ Nellie says, ‘I said, “Excuse me, who are you?” and the rest is history! 

He stood out because he was gentle and had a decent job. We’ve now been married for 47 years.

The couple lived what John describes as a ‘peripatetic existence’. 

Nellie was a home economics teacher in Botswana and Zimbabwe, trained teachers in Papua New Guinea and taught at international schools. 

After further studies at Bristol University, she taught psychology and English at the University of Brunei. 

‘Wherever we worked, Nellie was exceptional at making friends and getting involved,’ John says.

She was an excellent cook and party organiser – though I am biased!

Nellie and John settled in Bristol where they have lived for the past 11 years. They now have four children and five grandchildren. 

‘Our children are all over the place,’ says Nellie.

John says, ‘We travelled a lot, and I guess our children have followed suit!’

Shock of diagnosis

Around six years ago, Nellie experienced memory problems and migraines, so went to see a GP. 

It’s a common misconception that dementia is a natural part of getting older and Nellie initially put her symptoms down to age. 

Her Alzheimer’s disease diagnosis in 2017 – following some memory tests – came as a shock. 

I was quite worried because up to that point, I wasn’t afraid of anything.

‘I went to the doctors, they tested me and told me, “You need to be careful.” 

‘Most of the time I’m fine but sometimes my head doesn’t function very well. 

When I was young, my brain helped me a lot. Whereas now I can’t remember who was in the house yesterday. 

‘I also have trouble remembering names and my memory is going.’ 

Nellie describes herself as independent and having to surrender her driving licence following her diagnosis was upsetting. 

‘I bought my own car before I met John, so I didn’t have to accept lifts from other men,’ she says.

To be told that I can’t drive, I find that so depressing.

Being less mobile is a challenge for both John and Nellie, as the couple are very active in their community.

Helping people

While in Zimbabwe, Nellie and John joined the Lions – an international volunteering organisation dedicated to improving communities. 

Nellie was president of her local Lions club several times, and the couple have been active Lions ever since. 

‘Why do I like being a Lion? Because I know what it is to be poor, to have nothing and to be ignored by other people. 

When somebody needs help, the Lions will put the money together and help them. So that’s why I like Lionism. 

Going on day trips is a favourite pastime, and John and Nellie have combined this with helping to make venues more accessible and inclusive. 

John says, ‘We did a tour of the SS Great Britain and listened to the audio guide with a view to making the venue more dementia friendly.’

Music and research 

Music is particularly important to Nellie and John, who attend a Singing for the Brain group run by Alzheimer’s Society. 

With groups across the country, Singing for the Brain helps people affected by dementia improve their wellbeing through song. 

‘I’ve always enjoyed singing,’ Nellie says, ‘When we were in boarding school in Zambia, we didn’t have a lot of things to entertain us, but we used to dance. 

My favourite type of music is music you can dance to.

Nellie and John are also both keen to get involved in dementia research. 

They hope to take part in the MySmile study at North Bristol NHS Trust, which is exploring links between Alzheimer’s and gum disease. 

‘I get involved with research because I like helping people,’ Nellie says.