When Abigail Kelly’s grandmother Margaret suddenly seemed to lose interest in horse racing, which she had been a huge fan of since she was a child, and struggled to fill in betting slips, they knew that something was seriously wrong.
The close-knit family had spotted what turned out be the early signs of dementia – and Margaret was subsequently diagnosed with a mixture of Alzheimer’s disease and vascular dementia and died in March this year.
As the Alzheimer’s Society reveals new research showing that 88 per cent of people affected by dementia have not contacted a charity for support.
Around one million people are living with dementia in the UK and the charity says thousands are facing the realities alone without access to vital support and Ms Kelly has highlighted the importance of family and friends spotting the tiny signs that something is wrong and seeking help.
Ms Kelly, 23, who lives in Pontefract, West Yorkshire, told i that often those experiencing dementia don’t realise or admit that something is wrong but said it is important that family members who know their loved one “through and through” are alert to signs which they know are unusual.
The assistant psychologist, who had a very close relationship with her grandmother who she called “Nannan”, said: “Horse racing was my nan’s absolute passion and she grew up in proximity to Pontefract Race Track.
“As a little girl, I remember my dad picking me up from school and driving me to the racetrack and my nan would be there and I would sit there all afternoon with her. She would always have her purse out and we would choose a horse and I’d base my choice off the colours the horse was wearing.
“She would put a £2 bet on a horse for me and even if I lost, she’d tell me I’d won and give me £4 back. I have so many fond memories of sitting with my nan and watching the racing.
“My nan lived around the corner from us and when I was little, my parents both worked full time so it was Nanan who took me to school and picked me up. We were very close all of my life and she was such a vivacious, fierce, and strong-minded woman who was a typical mother hen. I grew up feeling so nurtured and loved.
“She was someone you could talk to about anything and I always felt really comfortable going round and pouring my soul out to her.”
As well as going to the races locally, Ms Kelly’s grandmother loved watching it on the television and going to different race meetings all over the country.
So when her grandmother’s interest in horse racing suddenly started to wane her family knew it was a sign of something serious.
“Nanan was not really watching the racing as much, which was strange, and when she would write on a betting slip, her handwriting was appalling and we couldn’t make it out,” recalled Ms Kelly. “It was like her motor skills had completely deteriorated.
“She was also betting on horses that weren’t even in that race. They were horses running in a completely different city and at a different time. Then she had no interest in going to the races anymore and when we would ask her, she would refuse and get quite hostile about it.
“We as a family became very concerned about her.”
Ms Kelly told i that they initially became worried about her grandmother one Christmas Day when she woke up and started crying because she thought she had forgotten to take the turkey out of the freezer the night before to defrost it – when in actual fact, she had already cooked it the previous night, but had forgotten.
“We mentioned it to our family GP and they referred her for a brain scan, but it came back as normal for her age and did not flag any concerns.
“However, when she lost interest in horse racing and betting, we knew it was something serious.
“To anyone else, if you said: ‘My nan used to love horse racing, but now she doesn’t seem bothered anymore’, they wouldn’t think it sounded too concerning. But for my nan, horse racing was an interest she had stood by from childhood, right through to her seventies, so we knew the change was something big as it had always been such a huge part of who she was.”
Ms Kelly’s grandmother was eventually diagnosed with mixed dementia last year at the age of 75. She deteriorated quickly, particularly after suffering a fall and having to go into hospital where she struggled with the different surroundings and became distressed. She soon lost the ability to move or speak and died in March.
“Towards the end, I couldn’t look at my nan as I found it really hard to see her suffering. She was so poorly,” says Ms Kelly. “When she passed away, I was totally bereft and devastated.”
Wanting to do something positive to raise awareness about dementia and turn her grief into empowerment, Ms Kelly signed up for one of the Alzheimer’s Society’s 25 memory walks and will be taking part in the Leeds event in September.
The research by Alzheimer’s Society, which provides help and advice for anyone affected by dementia, found 94 per cent of people who used the charity’s services said they received useful information, 95 per cent their dementia adviser understood their needs and 83 per cent said they felt more capable of managing it and felt less isolated.
Kate Lee, chief executive officer for Alzheimer’s Society, said: “No one should face dementia alone. Alzheimer’s Society is here for everyone affected by dementia through our support services which people tell us are a lifeline.
“One in three people born in the UK today will develop dementia in their lifetime which is why we need to turn the tide of this devastating condition.”
Early signs of dementia
Each person experiences dementia in their own individual way. Different types of dementia also tend to affect people differently, especially in the early stages.
However, there are some common early signs and symptoms of dementia. These include:
Memory loss – such as problems recalling things that happened recently
Difficulty concentrating, planning or organising – such as struggling to make decisions, solve problems or follow a series of steps (such as cooking a meal)
Problems with language and communication – difficulties following a conversation or finding the right word for something
Misunderstanding what is being seen – such as problems judging distances (such as on stairs) or perceiving the edges of objects, and misinterpreting patterns or reflections
Being confused about time or place – such as losing track of the time or date, or becoming confused about where they are
Mood changes or difficulty controlling emotions – such as becoming unusually anxious, irritable, sad or frightened, losing interest in things and personality changes
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