Barbara with Alzheimer's Society staff

Raising awareness of dementia in Black, Asian and other Minority Ethnic communities

Thelma Gray was diagnosed with dementia in the early 90s and found a total lack of support. Her eldest daughter, Barbara, explains how her family’s story is motivating her to raise awareness among Black, Asian and other Minority Ethnic communities.

For the past few years, I have worked constantly to educate people about dementia.

I have delivered Dementia Friends Information Sessions on a bus in Catford to local drivers, to firefighters at Lewisham Fire Station, and to a whole staff team at my local Co-op.

I have also created Dementia Friends Champions amongst council staff and community leaders, who themselves have created hundreds more Dementia Friends. 

Importantly, for me, I’ve created around 200 Dementia Friends amongst African and Caribbean communities. This is a legacy of my mother and family’s experience of living with dementia.

Mum’s story 

I’m inspired by and in awe of my mother, Thelma Voilima Gray – her sense of adventure, determination, resilience and ambition. 

As a single woman, Mum left everything and everyone in Kingston, Jamaica. She flew across the Atlantic in 1954, away from friends and family, to set up a new life on a different continent. 

Life in London wasn’t what she expected, and two years later – now married – she put her dreams on hold and focused on her children, of which I’m the oldest. We were everything to her, and she fought to achieve the best in life that we could, despite the barriers we faced. 

Mum’s plan was to become a trained hairdresser with her own salon. There was nowhere for stylish women like her, who arrived from the Caribbean, to maintain those glamorous looks. 

For a Black woman with a young family, owning a salon was out of the question. So a corner in one of the two rooms we lived in provided the space to run her hairdressing business.

She was popular, and I remember our little space busy with women coming over at the weekend for the latest hairstyles. 

Despite the challenges she faced, Mum became a qualified hair technician and colourist at the prestigious Morris School of Hairdressing. She won competitions and had loyal customers, both black and white women, for many years.

A sudden dementia diagnosis 

In 1990 my sister started to notice Mum changing. She seemed more anxious than usual, worrying about things that wouldn’t normally get her flustered. We thought it might have been the menopause. 

But then she started to lose keys and get locked out of the house. She just wasn’t herself. Not long after, she was diagnosed with dementia caused by diabetes. 

There was no support or explanation, other than it would get worse. We didn’t know what questions to ask or where to go for answers. We were left.

Amongst the Caribbean community that kind of response was the norm. People made the best of the situation using whatever knowledge and resources they had, drawing on old time methods and remedies from “back home”. 

By 1994 there was a daily succession of district nurses and carers in and out the house, after the family insisted for help. There were rotas for her adult children and grandchildren to stay daytime, overnight, weekdays and weekends, supported by her friends. Everything was designed to keep her safe, fed and as comfortable as possible. It was hard. 

Not many people then knew about dementia, and as a family we were no different. Our employers were not supportive and we were in roles with no autonomy. Time off to care was impossible.

Our dementia advisers are here for you.

Changing roles from children to carers

The relationship between Mum and us, her children, was changing. In Caribbean households, children – even as 30-year-old adults – obey their parents. Taking control and telling Mum what to do was an unbelievable situation and felt wrong. 

My mum had been independent and strong all her life, so the process of transferring control to us was difficult for everyone. We tried different strategies to make her feel she was in control and making choices and decisions. 

The carers became more unreliable as Mum became more unwell. Once, I lay upstairs hearing the carer come in, encourage my mum to stay in her nightgown, give her diabetes medication, a herbal tea and leave – all within five minutes. After not eating all night, she needed breakfast to balance the effects of the medication lowering her blood sugar. It was very dangerous and the local authority who commissioned the service was unapologetic.

Family support 

About 1998, my sister made the decision that Mum would move in with her. 

A clinician and expert told us it would be a big step and she might not live long. They thought moving her from where she was comfortable, familiar, and known by the neighbours and local community would be a shock. Some of the family were also worried about the danger of moving to a house with lots of stairs and coping in a busy family environment.  

But something brilliant happened. My sister’s house was full of children, grandchildren, nephews, nieces, and friends who visited frequently.

There was noise and bustle, which turned out to be the best place imaginable for Mum. She thrived in that environment.  

Thelma at the centre of a large family gathering

Surrounded by loved ones at a family gathering

The children would help her and she would try to help the children. She adapted to the stairs and she had the freedom to move from room to room. She talked to whoever she came across, though she couldn’t always form the words. 

Looking back, I believe she thought she was a young mum with her five children and all their friends and her visitors around her. It doesn’t matter, it’s important for everyone to feel loved. Eventually Mum lost her ability to speak, but occasionally out of nowhere she would say “Thank you” very clearly to my sister.

She knew she was being taken care of. 

Eventually, managing Mum’s diabetes became a huge challenge and she was in and out of hospital. Her dementia accelerated until she became bed bound. She passed away at home with her family around her in January 2015.

Mum’s legacy 

In the borough of Lewisham, where I live, there was a desire to do more around dementia. It wasn’t intentional but I found myself developing group sessions, creating Dementia Champions amongst Council staff and community leaders. 

To date I have created about 200 Dementia Friends amongst Black communities, who really aren’t hard to reach and are keen to understand and access services.  

In 2019, I was appointed Mayoress of Lewisham, which was quite unexpected.

I feel my mother Thelma is with me all the time. She equipped me with the skills and sense of responsibility to take forward her legacy of being fair, doing the right thing for people, and enabling the next generation to be the best they can be. 

That feeling of hopelessness after Mum was diagnosed will live with me forever.

I realise that, between us, my family instinctively did an amazing job, but it could have been easier with information and support. 

My work now is raising awareness amongst Black, Asian and other Minority Ethnic communities, encouraging people to go to their GP for a diagnosis and to lead a healthy lifestyle to reduce the risk of dementia.

Alzheimer’s Society is a great organisation and has made great strides in raising awareness. They have an important role to play to improve equity and reduce race disparity so that all people with dementia can live well. I am sure they will rise to the challenge. 

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9 comments

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5 years ago I noticed my husband driving was becoming erratic at times on one occasion he was almost on the other side of the road this was worrying especially so as we had the grandchildren with us I spoke to him about it but he got angry and accused me of criticising his driving this continued as well as memory loss I continued to tell him I didn’t feel safe in the car when he was driving and I refused to allow him to take the grandchildren out in the car. Our son was in the car with us one day when he almost drove into a man as he was getting out of his car our son shouted him and he said “I didn’t see him” as you can imagine my son and I was shocked, we decided there and the he must see the doctor he agreed thankfully.
He was given a brain scan and the doctor diagnosed Alzheimer’s and stopped him from driving immediately, he cried and for a while it was hard for him to accept because for years he drove everywhere long journeys on holidays and now it was as if his life was shattered, fortunately I’m a driver so I was able to assure him that I was more than happy to take on the driving and would not hold back from taking him wherever he wanted to go.
Life for us now is extremely sad as his condition progresses with his speech becoming repetitive and lacks interest in his appearance as his interest in life deteriorate. Life for me Is extremely challenging, we’ve been married for 50 years I was a nurse and had an accident at work and became disabled, my husband was my carer and now the tables have turned I’ve had to become his carer, I’m finding it so hard watching the changes in my husband daily.
I would welcome any helpful advise from anyone with Alzheimer’s experience.
Thank you.

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Hi Leleith, thank you for sharing.

I'm really sorry to hear about your husband's diagnosis and that you've been having a difficult time. Please know that we're here for you any time that you need advice or support.

It might be helpful for you to call our Dementia Connect support line on 0333 150 3456, where you can speak with one of our trained dementia advisers. An adviser can listen to you and learn more about the challenges you're facing, then suggest advice and support that may be most appropriate: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk to others going through similar experiences. If that appeals to you, you could have a look at out online community, Talking Point. You can share your experiences and ask questions of the community here, or just read what other people have to say: https://forum.alzheimers.org.uk/

I really hope these links are helpful, Leleith. Remember to call our helpline whenever you need support.

Alzheimer's Society blog team

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Thank you for sharing your story which was very moving !
I agree that lots more needs to be highlighted in terms of understanding culture especially from people of BAME background with dementia

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Your family did an amazing thing to support your mother even though moving house was a risk given that new places can disorientate and cause upset. It clearly made a difference to her life and most importantly her happiness. I have been a sole carer and know that loneliness for carers and dementia sufferers is a tough call.

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Your story has made me feel so emotional. My husband has Alezheimer and Dementia , has to move him into residential care in November 2019 and all I feel is guilt about moving him. Well done to your family for taking care of your mum

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My husband is from Jamaica came here England 1960.lam white. I have asked for male carers. But that's ignored. My husband race, cultural needs are ignored. He has to have carers daily, as he has dementia since 2006.which has obviously gotten worse.

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Dear Barbara,
Thank you for sharing your story about your mother's dementia. Your family's story is a mirror of my mother's situation. My mother was diagnosed with alzheimers/dementia at age 89 and she is still going strong today. Like your mother, Thelma, my mother relocated from Jamaica to London in 1953, took up nursing, ran an hairdressing parlor from our home in Brockley, Southeast London for several years prior to moving to the USA where she is still living with her dementia at age 94. It is hard to see our vibrant, hardworking mothers live with such a life changing disease. I am praying for a cure for everyone in the future. Your story touched me in a very positive way. Let's talk about alzheimers and do something about it. For all mothers' now and in the future - a cure.

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Thank you for sharing your mother's story my parents has dementia my dad has passes away bless his him, at the age of 89 year old with dementia and phenomenon chest infection, corovirus 19, and he was born in St kitts 🇰🇳, came over uk in 50 , yes we all have to be stronge in these times pandemic corovirus thank you

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This has touched me profoundly. Thank you so much for sharing your story.

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