BBCDr Jo Wilson has died, aged 69, after living with dementiaA woman with dementia, who the BBC has followed for months as her husband battled to secure care for her, has died.
Dr Jo Wilson, from Newcastle, was a business executive before she was diagnosed in 2020.
After weeks of delays, she moved into residential care earlier this month but died on Saturday, aged 69.
Her husband, Bill, said he wanted their case to highlight health and social care issues.
Dr Wilson trained as a nurse but went on to become a high-achieving international businesswoman before her illness took hold.
The couple had been together for almost 50 years but, as the dementia tightened its grip, Mr Wilson had to look after his wife around the clock.
He previously described the care system as "broken".
He told BBC News: "I've done all this because I want to see change happen. Change can only happen if people stand on the rooftop and shout about dementia.
"There's a huge disparity between being ill - that is treatable by the NHS - and the illness of dementia. Nothing is free, we have to pay for everything."
Bill Wilson documented his struggles as he cared for his wife, Jo, round the clock at their home in NewcastleMr Wilson said it had taken two years to initially get a care package put in place for his wife, but only after she suffered a fall and ended up in hospital was one was finally agreed.
He found home visits from carers frustrating due to frequent changes of staff, unreliable timekeeping and a lack of understanding of dementia.
Speaking in October, he said estimates for residential care for his wife were around £1,500 a week which would have seen their savings used to cover the cost.
Current rules meant their local council would fund a place in a care home only when their owns funds had been exhausted.
Tyneside-based charity Dementia Matters was eventually able to step in to provide a residential bed.
Changes designed to help people cover their personal care costs were due to come into effect in October, including a more generous means-test and a lifetime cap on care costs of £86,000.
However, in November the move was postponed until 2025. after local authorities warned adult care services could worsen if the rollout was not delayed.
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