“We all know that memory is identity,” writes novelist Julian Barnes in his slim, mournful work Departure(s), which was billed as the 80-year-old writer’s final work of fiction upon its publication earlier this year.
“Take away memory and what do we have?”, he continues in the essayistic fragments that wrap around the fictional story at the book’s core. “Nothingness adrift” is what remains when memory is lost, he concludes.
It is a chilling but accurate description. Most of those who have witnessed a family member being steadily consumed by dementia will recognise the struggle between memory and identity that Barnes refers to.
The first time a loved one forgets your name or who you are, can feel like the deepest injury has been inflicted upon you and, perhaps, the moment when the grinding certainty of the disease becomes unimpeachable. It is the cruellest possible fusion of your sense of identity with the absence of memory in your loved ones.
The World Health Organisation estimates more than 57 million people live with dementia globally and that 10 million new cases are reported annually. It identifies dementia as a leading cause of death and a major cause of disability and dependency. Care systems around the world are struggling to keep up.
So, what do we have by way of preventing “nothingness adrift”?
In general terms, dementia prevention amounts to a sequence of lifestyle warnings about smoking, high blood pressure and type 2 diabetes, and advice to exercise regularly, maintain a balanced diet and stay mentally and socially active.
The National reported earlier this month that based on a new study, people aged 45 to 65 who did not smoke, maintained normal blood pressure and avoided diabetes could help keep dementia away for an additional 13 years. The rest might as well sit with something akin to good genes and reasonable luck, as there are no guarantees, only probabilities and possibilities. You might also smoke, have a bad diet and high blood pressure and avoid dementia entirely.
This may explain, in part, why the discussion around dementia tends to focus on care rather than cure. If prevention is a series of lifestyle markers with no guarantees and cure is an elusive target, then getting the right form of care for those with dementia becomes the aim.
In the UK, new Prime Minister Andy Burnham has this summer proposed a radical overhaul of social care. The current system places much of the burden upon individuals if their net worth exceeds £23,500 (almost $32,000). Despite the regular requirement to self-fund care, the government’s bill rises each year and is characterised as delivering a patchwork of outcomes.
It is an admirable aim and is driven by Mr Burnham’s personal experience, but there needs to be further urgent steps towards prevention and cure.
This summer, we also reported on Abu Dhabi hosting clinical trials aimed at preventing Alzheimer’s by using genetic data collected in the Emirati Genome Programme, which has identified people who do not have symptoms of dementia, but whose genes carry a greater risk of diagnosis as being suitable for the project. “We are not waiting for disease to appear,” an official told The National, “we are acting at the moment when intervention can matter most.”
Other programmes could also deliver results. Research has found that inoculation with a shingles vaccine could cut dementia risk by up to a fifth.
On its own, vaccination against shingles is recommended for older people, typically over 50 years of age, to avoid this unpleasant illness, which occurs if the chickenpox virus reactivates in adult life. Shingles usually attacks nerves, delivers a painful skin rash and arrives with headaches. Anyone who has had it will attest to the pain it causes and why it would be a good idea to have the inoculation to avoid further infection.
A two-dose vaccine provides years-long protection against the condition and appears, according to research, to offer a bonus outcome of a shield in 20 per cent of cases against dementia onset, although it is not clear why. The vaccine may also help those already living with dementia by slowing down cognitive decline.
Experts have described these outcomes from the shingles vaccine as positive, while noting that there may be a vaccine bias evident in the findings – meaning that people who sign up voluntarily for inoculations tend to be more health conscious and are often healthier than those who don’t, which may skew overall findings. The results are encouraging nonetheless.
Vaccination drives were a feature of the Covid-19 world but have become a contested space in the years since the pandemic.
But it is hard to ignore the potential return on investment for shingles vaccines when related to dementia, in terms of keeping loved ones healthier, potentially out of care homes and possibly reducing the requirement for central or individual funding of care. While the cost of the vaccine is relatively high for the two required doses of what is considered a “premium” vaccine, the potential savings in terms of later-life care far outweigh the initial outlay.
In the ceaseless balancing act between prevention, care and cure, the time is now for preventive solutions to rise to the fore. Safe harbours beat nothingness adrift every time, don’t they?
