Carli Pirie, 31, has a genetic fault which puts her at high risk of getting dementia while she is young
A young mother who has a 50/50 chance of developing Alzheimer’s in her 40s has pleaded with Boris Johnson to boost funding for dementia research.
Carli Pirie, 31, has a high risk of carrying a genetic fault which would mean her getting the disease while she is young.
Her mother, grandmother and great-grandfather all developed early-onset Alzheimer’s – and Miss Pirie is terrified her 11-year-old daughter, Olivia, may also fall victim.
Writing yesterday to the Prime Minister, she said: ‘I need to know that everything possible is being done to protect the future for my daughter and the rest of her generation to end the heartbreak that dementia causes.
I am asking you in your new role as Prime Minister to make a commitment to increase funding for dementia research and help find the treatments we so desperately need.’
Miss Pirie, whose mother Tracey is already in a care home with advanced Alzheimer’s at 58, urged Mr Johnson to triple dementia research spending to bring it broadly in line with the figure spent on cancer.
Her mother, Tracey, 58 (pictured), grandmother and great-grandfather all developed early-onset Alzheimer’s
She also backed the Daily Mail’s dementia care campaign, which is calling for an urgent solution to the social care crisis. More than 200,000 people have signed the Mail’s petition demanding an end to the scandal in which countless people have to sell their homes to pay for their care.
Miss Pirie said: ‘We have been to hell and back sorting out my mother’s care. Families have to jump through so many hoops just to get the right level of care. You are already having to cope with so much as it is, you shouldn’t have to deal with this as well. My mother is now in a good place with her care but I was shocked at how hard it was to arrange.’
Some 850,000 people in the UK have dementia – of which 500,000 have Alzheimer’s. Miss Pirie, of Biggleswade, Bedfordshire, who works for a heating company, has a 50 per cent chance of developing Alzheimer’s in the next two decades.
‘I do not want my daughter to have to jump through the same hoops I have had to if I need the same care,’ she said.
Miss Pirie is terrified her 11-year-old daughter, Olivia (pictured aged one), may also fall victim. Writing yesterday to the Prime Minister, she said: ‘I need to know that everything possible is being done to protect the future for my daughter’
Miss Pirie does not know yet if she carries the rare genetic fault which significantly raises the risk of early-onset Alzheimer’s. If she does, then Olivia will have a 50/50 chance of carrying the gene too. ‘It’s genetic pot luck,’ Miss Pirie said.
The Government spends £83million on dementia research a year – against £270million for cancer.
Hilary Evans, chief executive at Alzheimer’s Research UK, said: ‘We hear from people with dementia and their loved ones that what they want most are life-changing treatments.
‘Because dementia is caused by diseases, most commonly Alzheimer’s, we know that research, with the right support, can give us the tools we need to identify these diseases early, treat them more effectively and improve the lives of people with dementia.
‘No one has yet survived dementia. We’re asking the new Prime Minister to join us in the vision that we could one day live in a world where that’s no longer true.’
The Department of Health said: ‘We have committed to spend at least £60million a year on dementia research and last year spent more than £80million to accelerate progress in early detection, improved treatment, prevention and care.’
200,000 signatures …and growing as more and more back call to end care costs scandal
Signatures on the Daily Mail’s petition to end the dementia care costs scandal has soared past 200,000. The Mail is calling for the Government to end its neglect of families living with the burden of dementia.
We have been inundated with support from those hit by a ‘tax on dementia’ – with families spending £15billion supporting relatives with the condition in the last two years alone. In that time 770,000 over-65s have been turned down for care funding by local authorities.
Charities, academics and celebrities have backed the campaign. The campaign is calling for Boris Johnson to urgently set-up a cross-party group to examine new options for funding dementia care.
And he must set up an NHS ‘dementia fund’ to help families pay the extra cost of supporting those affected by dementia compared to other conditions.
Barry Warner, adding his name to 204,000 others on the change.org website last night, said: ‘It is an outrageous situation when people have saved for their old age and paid taxes all their lives and are robbed by uncaring government at the end.’
- You can help send a message: Sign our petition change.org/dementiacare