A dementia specialist has told about the varied warning signals of dementia that go beyond memory loss – after seeing various symptoms in her mother, father and grandmother, who all suffered the disease.
Helen McDavitt, 52, from Hassocks, West Sussex had her first experience with dementia when her grandmother was diagnosed in the 1990s.
Her grandmother Barbara McDowell initially showed symptoms in her early 60s, in which her personality became unusually ‘angry’, ‘paranoid’ and ‘vulnerable’.
She also made frequent, bizarre errors, such as putting an electric boiler on the hob.
Barbara, who died of the disease in 1997, Alzheimer’s, the most common type of dementia that influences memory, thinking and behavior.
Helen, who was in the twenty training to become a nurse at the time of her grandmother’s diagnosis, said: ‘I went on a journey in 1992 for nine months and when I returned, she had completely changed.
‘She kept a diary and we noticed that it was everywhere, all scrambled eggs and full of strange writing.
“It was almost like you could see her brain on paper.”
Helen with her parents Keith and Ann – both members of the memory – Robbing Disease
Her grandmother was placed in a care home for extra support when she started to become ‘cross’ and paranoid’ over the years.
“She was always really extroverted, bubbles and sensitive and she just got pretty angry,” Helen said.
“She started to be really vulnerable, she lost a lot of weight and just started to really change,” she said.
The experience of taking care of her grandmother inspired Helen to work in elderly care and hospice work.
About ten years later in 2007, Helen’s father, Keith Sellers, started in his early 60s at the time, with strange symptoms.
These include changes in his personality, including the appearance of ‘withdrawn’ and ‘saying the strange strange thing’.
Her father Keith who died of the disease despite the fact that he never got a formal diagnosis
“We started to notice subtle changes in his personality, he was withdrawn and said the strange strange thing.
“It was around that time that I knew enough about dementia, and I thought this could be a family link – he was really paranoid,” she said.
However, it was when her father forgot how to fill his car with gasoline, so she was increasingly worried.
“He came home and said:” I forgot how to fill myself with gasoline, can you help me? “Said Helen.
Things were then unraveled fairly quickly ‘and Helen’s husband Paul, also 52, built an extension on the side of their house so that her father could stay with them.
“We knew what we could expect from his mother, they were free on their personalities and I knew it would be really difficult,” Helen said.
He could become verbally aggressive and sometimes he threw things.
‘It became very difficult, he became really combative, really angry and cross. He could become verbally aggressive and sometimes he threw things. ‘
Although he never received a formal diagnosis, his health deteriorated and he died of the disease at the age of 70.
Her experience with the devastating disease ensured that Helen was determined to “make something good from something very bad.”
Determined to improve the diagnostic path for people who showed symptoms of the disease, she started a role that dementia will investigate in 2013.
“My father has never received a formal diagnosis, so this was a role that I absolutely loved, research into research into how people could be accurately diagnosed,” Helen said.
For the past seven years she has been a dementia -admiral nurse in Dementia UK and is now working to support the whole family through dementia.
Then, last year, the curse of the disease struck again. Her mother, Ann Sellers, was diagnosed with vascular dementia of 78 years, so that Helen is ‘so often’ filled with ‘fear’ for her own future.
Helen shares the warning signals after three of her family were hit with dementia
Helen (left) with her mother, Ann (right), who was diagnosed with vascular dementia in 2024
Vascular dementia, a common type dementia caused by a series of mini-strokes that reduce blood flow to the brain, is estimated to be about 180,000 people in the UK.
“It manifests itself in a totally different way, which is unusual of dementia, it is a different beast every time,” Helen said.
Her mother’s symptoms have been ‘less acute’ than her father or grandfather, she said.
The early signs of vascular dementia usually include problems with planning and problems with understanding and concentration, as well as mood changes.
But according to the NHS these symptoms can be ‘hardly noticeable’ and are often considered for depression.
Helen has made her own future fear the prevalence of dementia in her family.
‘It’s your biggest fear when you’ve seen it. I can only hope that my family has an admiral nurse to support them, “she said.
It is the hope of Helen that her husband can get the support of a trained nurse if she develops the disease in the future.
She added: ‘Dementia is so complex and so different, it is absolutely everyone and it can crush families.
‘If you have it in your family, it will be something you fear for yourself.
‘I still go through the menopause and if you have a symptom that is quite common and can be diagnosed incorrectly, you think it is actually the start of dementia.
“It is very real, that worries and fear, and it absolutely fills me with fear so often.”
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