I know the effect dementia has on a family – we need to continue Barbara Windsor’s legacy in fighting it

It’s an illness that doesn't take any prisoners. No family should have to go through such pain

Lynn Carratt
Sunday 13 December 2020 18:21
Dame Barbara Windsor dies aged 83

After Dame Barbara Windsor bravely decided to go public with her Alzheimer's diagnosis in 2018, she became a face of hope, offering a sense of support to the millions of sufferers worldwide.

With the support of her beloved husband Scott Mitchell and close friend, actor Ross Kemp, Windsor campaigned until the very end of her illness to raise awareness of the cruel condition and to remove the stigma that surrounds it. She made it clear to those close to her that she wanted dementia treated as a medical problem and not a social care problem.

The actor firmly believed the current care provision for people living with any form of dementia is entirely inadequate, unfair, difficult and in some places even impossible to access.

Speaking out in a recent interview her former EastEnders co-star Kemp told how the actor despaired of the disease and expressed her wish that more could be done to help sufferers and more money should be invested in research to help find a cure. He also said she wanted a "Barbara Tax", that could help prevent people from having to sell their homes to look after their loved ones.

Who could forget the picture of her in 2019 proudly posing alongside her husband Mitchell, ahead of his London Marathon challenge. He led a team that was aptly named "Barbara's Revolutionaries", which included many of her former EastEnders castmates and radio host Chris Evans. The team raised more than £550,000 between them for the Dementia Revolution campaign, which aims to take a stand against dementia and lead the charge towards a cure.

In September last year, Windsor and Mitchell met with Boris Johnson and presented him with an open letter signed by 100,000 people calling for the "devastating state" of dementia care to be addressed. At the launch of the Conservative manifesto two months later Johnson promised that no one would have to sell their home to pay for care – but failed to give details on whether there would be a long-term plan in place. He also pledged to put an extra £83m a year into dementia research over the next decade.

Granted he's had a lot on his plate this year with Brexit and the pandemic, but prime minister, we are still waiting and our elderly and vulnerable and their families can't wait any longer. A heartbroken Mitchell has also called for care promises to be kept, honouring Barbara's memory and urged the government "to be true to their previous promises and invest more into care".

It's also a battle my family have had to endure with my dad Stuart, 74. His dementia journey has mirrored that of Windsor's illness. As a family, we have struggled to find the right care for him, with limited provision where he lives in Hull. From inexperienced carers to visits from social services without our knowledge, even though he didn't possess the mental capacity to make decisions for himself. The whole situation has been heartbreaking for us. No family should have to go through it.

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In the past few weeks, we have almost lost dad twice as he has fearlessly fought back from sepsis, a blood clot on the lung and a bout of Covid-19. He is medically fit to be discharged but is still languishing in a hospital bed because we are unable to find the care provision he needs at home.

If we go down the residential care route, we are faced with the painstaking task of selling his home to pay for it, on top of the thousands of pounds of his life savings we have already spent on home care.

We need to continue Windsor’s legacy and fight for the adequate care provision for people living with dementia – and for more money to be spent on research to help find a cure.

We are living longer, and the disease is becoming more and more prevalent. Only last week England rugby World Cup winner Steve Thompson, 42, and former Wales back-rower Alix Popham, 40, announced they are part of the group of eight former players who have been diagnosed with early-onset dementia and are expected to sue the game's authorities over allegations of brain damage via negligence. Last month England World Cup winner Sir Bobby Charlton also announced his dementia diagnosis, the fifth member of the 1966 squad to do so. 

Make no mistake, dementia is an illness that doesn't take any prisoners. No family should have to go through this pain. We need to remember that it can happen to anyone of us.

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