Real stories

Why it's important to ignore the stigma and get your loved one a dementia diagnosis

George was diagnosed with Alzheimer’s disease in June 2022. Originally from Jamaica, he came to the UK in 1955, with the British Army, and has lived and worked here ever since. 

‘Birmingham means a lot to me,’ says George. ‘It’s where Tencie and I got married, and where I began my career. I worked in local politics and education before becoming a radio presenter on New Style Radio.  

‘I was known as “2 Gs” and because my voice was distinctive people would hear me in the restaurant or street and stop me saying, “I know that voice!” My voice will be my legacy.’

Tencie is reminded of how education was George’s top priority - for his children, and for many people he got to know. Being on the radio was a way of connecting, educating and influencing his community. He spoke passionately about Black History.

‘All that mattered was that he was helping people. From being a union rep, to school governor to local councillor, he wanted the best for everyone. Even now, by sharing his experience of dementia, he is still helping people, and that makes me proud.’

First signs of dementia

'I’ve lived with George for a long time, so I noticed some things were not right,' says Tencie. 

'In 2018 he started misplacing things. Then he would make accusations – thinking people were coming in and taking things, or that I was. He was thinking and saying things that were just out of character. I kept thinking to myself, something is not right here.

I thought we should go and see the doctor. I needed to know what was happening to him.

'George didn’t want to go through with it. He didn’t want people questioning me about what was happening. But things were changing so fast. He started saying to me, "Go away, I don’t want you anymore, I don’t want you to be my wife".'

But I told him we’re in this for the long haul. We said our vows for better and for worse, in sickness and in health, and if something had happened to me, he would not have left me.

With the support of their doctor, a staff member from the community where they live, and their Dementia Advisor Althea, George agreed to undergo assessment.
 

Getting a dementia diagnosis

George was referred to the Dementia Team, and after undergoing testing the couple were visited by a consultant in June 2022.

‘The consultant said, “Mr Gordon would you like me to just go ahead and tell you straight up?”,’ Tencie explains. 

‘He said, “Yes.” And the doctor told us, “You have Alzheimer’s disease.”

‘I thought “Oh my lord!” Now I knew what I dealing with. 

Before he was diagnosed, I was really stressed as I didn’t know what I was dealing with. 

'It was better to know, and I would tell people that. Get the diagnosis so that you can understand what is happening.’ 
 

Living with dementia

Life after diagnosis has had its challenges for Tencie and George. 

‘When I look at him sometimes, even now, I see changes in him,’ says Tencie. ‘When I look in his eyes, there’s no focus. But then he will start to cry when he remembers things.’

‘Sometimes I don’t know what to say, or how to calm him down. And if I say the wrong thing, or use the wrong terminology, he can get really, really upset.

‘He’ll tell me how frightened he gets, sometimes, when he doesn’t know what’s going on. And that’s when I go to him, and I hug him, and I tell him we’re in this together. 

‘A lot of people say they don’t know where I get the strength from, or how I cope, and that I’m a strong person. But I don’t see myself as strong. I’m just doing what I have to do, for someone I love.

When you love that person, it’s unconditional. You don’t pick and choose which parts you want to love. I’m his carer, but I’m his wife too.

Cultural stigma 

Tencie would encourage anyone with concerns about themselves or a loved one to seek help. 

‘There are a lot of people who need help, but they won’t go to the doctor,’ she says. 

There is a stigma which means people are afraid to go and get a diagnosis. 

'But Alzheimer’s is a disease of the brain, it’s a real thing that is happening to our people.

‘Ignore the stigma and get your loved one diagnosed. There is a lot of help out there.’
 

Support from Alzheimer's Society

George and Tencie live in a retirement village, which has a high number of residents with Caribbean heritage. 

This is where they met Alzheimer’s Society Dementia Adviser, Althea Howell, who makes herself available for any residents who have questions, queries or worries about memory problems. 

Tencie said, ‘Althea, from Alzheimer’s Society, talked to George, she talked to me and then she talked to us together. She gave us leaflets, information and support. She has explained a lot of what has happened to George. Althea has done a fantastic job as she enlightens you about it. I really do appreciate her for that! 

‘She told us about the bookcase analogy so I could understand how the condition moves from one stage to the next. She also arranged for George to go to a peer support group and managed to arrange a taxi for him so he could go.’   

George says, ‘I have Althea to thank for my feelings of being able to cope. I know Althea doesn’t just look after us – she helps all the generations in our community.’