Dementia - theguardian coverage
Remember Me - the Hereford Courtyard Theatre 2014 Dementia Week event here
three pages - more info at foot of page this page has been written with hawks in mind
The photo shows Yvonne Roberts in 1992 with her father, John, then aged 70. Yvonne Roberts has been an award-winning journalist, writer and broadcaster for more than 30 years,
This page sets out the main points in an article in the Observer, 15 December 2013. Some readers may only want an overview. Others can proceed through the three pages according to depth of interest.
Links are at the foot of the page.
Synopsis
- Yvonne Roberts writes about the dementia-led demise of her father,
- 36 million people worldwide have dementia
- The public viewpoint is that misfortune for the old is inevitable
- The fight is described to keep her father out of inappropriate residential homes of near-shameful Dickensian standards ..
- and in the care of the health service for which her father had paid his taxes all his working life
- The illusion that her father can get "better" is hard to let go, especially for her mother ...
- for whom, throughout, there is little support
- The fight against the geographical inequality of some families having to sell their home to pay for care the NHS should provide continues
- The highest standards of care should be a right for all victims of the disease, not just a privilege for the few
War – of a kind – has been declared on dementia. My dad, who would have been 92 years old today, would have expressed approval, up to a point.
It's estimated that 36 million people worldwide ... have dementia, a term used to describe progressive brain cell death manifested in symptoms of cognitive decline such as forgetfulness, personality change and impaired communication and thinking.
In personal terms, that translates into the memory of a Sunday in early 2004, when my dad, John Trevor Ellis Roberts, then 83, was enjoying a family meal. He raised a glass, as he loved to do, and began to propose a favourite toast in Spanish, a language he had learned during the 1940s. ...
By Father's Day, in the third week of June of the following year, he had deteriorated so rapidly that in a note I rediscovered ... "I wonder if this will be the last Father's Day Dad will remember. People say, 'He's 84, he's not doing too badly', as if misfortune for the old is inevitable and rationed out."
A diagnosis of dementia ought to be a passport to a life still lived well – not a miserable wait for an end during which the only "battle" that takes place, as it eventually did with my dad, is the fight to keep a loved one out of inappropriate residential homes of sometimes near-shameful Dickensian standards and in the care of the health service for which he had paid his taxes all his working life.
My dad's medical notes show the decline not untypical of the disease. ... He remembers a favourite anecdote in full, and he is delighted. So am I: the illusion that he can get "better" is hard to let go, especially for my mum.
In September, in a cognitive test, he fails to correctly repeat, "No ifs or buts …" ... Then he moves, for assessment, to a psychiatric hospital. ... The ward is unpredictable and, at times, scary. Throughout, there is little support for my mother. My dad loses the power of speech.
After several weeks, we are told that he is not eligible for continuing care funded by the NHS. He must go to a residential home. ... Bizarrely, a doctor says a residential home would be better because in hospital my dad would be more prone to chest infections. We, like too many families, are lost in a world of the surreal.
Eventually, we win the fight for NHS care ... Today, a diagnosis may take just weeks, not months, but the geographical inequality that means some families have to sell their home to pay for care the NHS should provide continues.
.... some private residential homes – charging £1,000 a week and more – are pioneering ... stimulating environments, based on the ethos that a life well-lived matters for all but perhaps especially so for those who have little recall of yesterday. But that standard of care should be a right for all victims of the disease, not just a privilege for the few.
My father died, two months before his 90th birthday, two years ago. The dementia had left him a shell but it couldn't take away his reputation as "a lovely gentleman".