Mother, 31, begs new Prime Minister Boris Johnson to pump money into the research budget for dementia
Carli Pirie, 31, has a genetic error that puts her at great risk of developing dementia while she is young
A young mother with a 50/50 chance of developing Alzheimer's in her forties has called on Boris Johnson to stimulate funding for research into dementia.
Carli Pirie, 31, has a high risk of bearing a genetic error, which would mean that she gets the disease while she is young.
Her mother, grandmother and great-grandfather all developed Alzheimer's with early onset – and Miss Pirie is terrified that her 11-year-old daughter, Olivia, can also be the victim.
She wrote to the Prime Minister yesterday and said, "I need to know that everything possible is being done to protect the future of my daughter and the rest of her generation to put an end to the heartache that causes dementia."
In your new role as prime minister, I ask you to make a commitment to make more money available for dementia testing and to find the treatments that we so desperately need. & # 39;
Miss Pirie, whose mother Tracey was already in a nursing home at the age of 58, urged Johnson to triple research spending on dementia to bring it broadly in line with the amount spent on cancer.
Her mother, Tracey, 58 (photo), grandmother and great-grandfather all developed early Alzheimer's
She also supported the Daily Mail dementia care campaign, calling for an urgent solution to the social care crisis. More than 200,000 people have signed the Mail petition and demand an end to the scandal in which countless people have to sell their homes to pay for their care.
Miss Pirie said: "We went to hell and arranged my mother's care. Families have to jump through so many hoops to get the right care. You already have so much to do with it, you shouldn't have to deal with this either. My mother is now in a good place with her care, but I was shocked at how difficult it was to arrange. & # 39;
About 850,000 people in the UK have dementia – including 500,000 with Alzheimer's. Miss Pirie, from Biggleswade, Bedfordshire, who works for a heating company, has a 50 percent chance of developing Alzheimer's in the next two decades.
"I don't want my daughter to jump through the same hoops as I have to, if I need the same care," she said.
Miss Pirie is terrified that her 11-year-old daughter, Olivia (in the photo), can also become a victim. She wrote to the Prime Minister yesterday and said, "I need to know that everything possible is being done to protect my daughter's future"
Miss Pirie does not yet know if she has the rare genetic error that significantly increases the risk of early Alzheimer's disease. If she does, Olivia also has a 50/50 chance of carrying the gene. "It's genetically lucky," Miss Pirie said.
The government spends £ 83 million a year on dementia testing – against £ 270 million for cancer.
Hilary Evans, CEO of Alzheimer's Research UK, said: “We hear from people with dementia and their loved ones that what they most want is life-changing treatments.
& # 39; Because dementia is caused by diseases, usually Alzheimer's, we know that proper support research can provide us with the tools we need to identify these diseases early, treat them more effectively, and live the lives of people with improve dementia.
& # 39; No one has survived dementia. We ask the new prime minister to join us in the vision that someday we can live in a world where that is no longer true. & # 39;
The health ministry said: “We have committed to spend at least £ 60 million a year on dementia testing and spent more than £ 80 million last year to accelerate progress in early detection, improved treatment, prevention and care. & # 39;
200,000 signatures … and grows with more and more recall to final care costs scandal
Signatures in the Daily Mail petition to end the scandal for the costs of dementia care have risen past 200,000. The Mail calls on the government to put an end to its neglect of families living with the burden of dementia.
We are inundated with support from people affected by a "dementia tax" – with families who have spent £ 15 billion to support relatives with the condition for the past two years alone. At that time, 770,000 people aged 65 and over were rejected for health care financing by local authorities.
Charities, academics and celebrities have supported the campaign. The campaign calls on Boris Johnson to urgently set up a cross-party group to investigate new options for financing dementia care.
And he needs to set up an NHS "dementia fund" to help families pay the extra costs of supporting people affected by dementia compared to other conditions.
Barry Warner, who added his name to 204,000 others on the change.org website last night, said: & # 39; It's a scandalous situation when people have been saving all their lives and paying taxes and being robbed by the end government that is not aware. & # 39;
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