Tracey, who has two sons Luke, 29, and Josh, 26, and two grandchildren, Arthur, four, and Stanley, six weeks, was convinced something was wrong a long time before her initial visit to her GP in early 2016. Yet she was only diagnosed in April this year.
She said: “I kept going back to the doctor again and again. I felt like I was a fraud, like I was making all this stuff up.
“After I had the scan I was told they wouldn’t know the results for a fortnight but I begged them to tell me.
“I remember being asked, ‘What do you know about dementia?’ “In a way I felt relieved because I finally knew what was wrong.
But the next day the bottom fell out of my world.
“But the next day the bottom fell out of my world.”
Tracey had suffered with low moods for a while, but frustrating day to day signs like not being able to put a name to a face, leaving taps running and keys in the door she dismissed as symptoms of being run down.
At first she was not too concerned but things worsened and she quit her job in summer last year after a string of dark thoughts brought on by her as yet undiagnosed condition.
She said: “It was really scary. I can remember driving to work in the morning and either wanting to drive off somewhere and never come back – or end it all.
Tracey Lane was diagnosed with frontotemporal dementia (FTD)
“I was having all sorts of strange thoughts. I was getting confused and unable to do some tasks that had always come easily to me.
“The most embarrassing thing was that we would have visitors come into the school every single week and when they returned it was like I had never seen them before. Now it all makes sense.
“I used to laugh and joke about it because that’s how we have tried to approach everything as a family – but it was really very frightening.”
Frontotemporal dementia is often diagnosed between the ages of 45 and 65, much younger than the age at which people often start suffering with more common types, like Alzheimer’s. Telltale signs include changes in personality and behaviour and difficulties with language.
This is different from the classic memory loss often associated Alzheimer’s.
Her disease was only picked up when, after years of badgering her GP, she was sent for a SPECT scan – a special type of nuclear imaging test.
She said: “My mother had suffered with the menopause so I just assumed it was that and I asked to go on HRT…but nothing changed.
“Even a neurologist told me it was probably just stress.”
There are no drugs that can slow the progression of FTD.
Tracey’s illness has put enormous financial and emotional pressure on the family, especially husband Mike, who works as a heating engineer.
Tracey worries how her illness will affect sons Luke and Josh
She said: “We had made plans but they are now on hold.
“I keep thinking they have got it wrong, they don’t know what they are talking about, so I suppose there is a bit of denial. Often on Friday mornings I used to take [grandson] Arthur to a car wash and we would video ourselves singing in the car as it was on. I feel guilty that I can’t do that anymore.
“I would rather end my life than let my loved ones see me suffer. I want to protect them. I have said that if I ever go into a home I only want them to visit me once a week.
“Sometimes I have a good cry, but usually when I am on my own.”
If you are concerned and would like to find out more, contact Alzheimer’s Society on 0300 222 1122 or visit alzheimers.org.uk/getsupport
Dementia is the UK’s biggest killer with women sufferers outnumbering men two to one.
Women live longer than men statistically and dementia risk increases with age.
But the condition is caused by brain disease, not age alone, so why are females more vulnerable?
One theory is oestrogen affecting brain development.
The Alzheimer’s Association International Conference linked this female hormone to women having better verbal memory than men at all ages (even in people with mild cognitive impairment).
This memory for words and verbal items may mask early symptoms of dementia, leading to under diagnosis and lack of early intervention.
The Alzheimer’s Society is investigating the role of blood pressure in dementia and striving to improve diagnosis, care and potential treatment.
Women live longer than men statistically and dementia risk increases with age
But we need more funding.
There hasn’t been a new drug for dementia in 15 years, so it’s important to keep research at the forefront and make sure upcoming treatments work.
The other issue is the large amount of women taking on the role of carer – many giving up jobs to do so.
Our Turning Up The Volume report showed that three in five carers say their health has been damaged caring for a dementia patient, and over a quarter of dementia carers feel cut off from society.
In fact, more than a quarter of female carers told us they had been lonely recently.
People with dementia tell us services like our helpline and online forum Talking Point are a lifeline – through those we hear everyday examples of the impact of inadequate care and crippling costs due to decades of squeezed funding.
A million people will be living with dementia in the UK by 2021, all deserving care. We cannot rely on families – wives, partners and daughters – putting their own health at risk. The Green Paper must end this injustice and ensure everyone gets the support they need.
Read more here: Daily Express :: Health Feedhappy wheels
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