I got dementia at 49...now I fear family seeing me suffer

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.

“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.

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 Tracey worries how her illness will affect sons Luke and Josh, right 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