Rob Rinder announced as Lewy Body Trust’s patron

The renowned barrister, broadcaster and author’s father is living with Lewy body dementia and he has frequently spoken out about the challenges that people with the disease and their families face.

Lewy body dementia is the second most common form of dementia in older people in the UK but is underdiagnosed and misunderstood by medical professionals and the public. It accounts for around 15 per cent of all dementia cases.

Rob has spoken of the difficulties his own family had after finally getting a diagnosis for his father in his late 60s.

He said: “There isn’t the quick access to a diagnosis. When you do get a diagnosis of Lewy body dementia, there is a lack of clarity of what is going to happen when, which is the most darkly frustrating and difficult issue of all. There just isn’t the research.

“For a lot of people living with this disease, there simply isn’t the care out there. There isn’t the type of funding required to give our loved ones the real and demanding assistance that is required for a disease like this.

“I have followed the Lewy Body Society’s work for some time, and as patron, I will now have the opportunity to support further the vital work they do in ensuring people with Lewy body dementia are not left behind by society, the medical profession or the government.”

Founder of the Lewy Body Society Ashley Bayston said, on behalf of the Trustees: “Rob’s experience with his father has given him a profound understanding of how Lewy body dementia affects not just the person living with the disease but everyone connected to them. He is a passionate advocate for good causes and we are honoured someone with his empathy and energy agreed to be our patron.”

The Lewy Body Society (LBS) was the first charity in Europe solely dedicated to Lewy body dementia and the only one in the UK.

It is leading the way in raising awareness, supporting people living with the disease and their families, and funding medical research. The UK’s only Consultant Admiral Nurse for Lewy body dementia is funded by the charity.

Through its Lewy List petition, the LBS is calling on the government to recognise four priorities:

· The right for all people living with dementia to be treated with dignity and respect

· The right to early and accurate diagnosis

· The right for Lewy body dementia to be recognised as a distinct form of dementia with unique symptoms and challenges different from Alzheimer’s

· The right not to be rejected from, or denied, care home admittance on account of Lewy body dementia diagnosis