Dementia in old age has always been known. Affected older people were often described as “dottled”, “doted”, “senile” or “feeble minded”. These unfriendly words were used shamelessly. Last century dementia as a symptom of illness was scarcely discussed. Even at the start of this one, most of the people who had dementia were never diagnosed before they died. Yet it was known that dementia in the UK was costing the system more than cancer, heart disease and stroke put together. Most delayed discharges (“blocked beds”) in hospitals involved older, female, patients with cognitive impairment as one of their major problems but who did not need an acute hospital. The whole system was in trouble, and individual families struggling.
When the pharmaceutical industry introduced medication which made some difference, it was initially expensive. So, it was carefully controlled in its availability in the NHS – this limit being exercised by restricting prescription to special clinics, staffed by psychiatrists of old age. The waiting time for that clinic was long, and getting there depended on having an informed GP who would refer you. Because the medication worked best in the earlier stages of the illness, and only works if your specific dementia was caused by Alzheimer’s disease, many people who might have benefited did not. They weren’t referred and diagnosed at the right time, if at all.
We, the public, would like it to be true that there is a cure around the corner, and that the NHS will care for us from cradle to grave, without cost at the point of delivery. We also want to believe that being kind to people with dementia is the answer to the problem.
In fact, despite almost weekly headlines on the front pages of newspapers, there is no prospect of a universal cure (because there are too many causes), and a cure for Alzheimer’s disease, the commonest cause of dementia, is still out of reach. In respect of the NHS, geriatric beds have closed, and the health system expects families to organise arrangements, often at their own expense, for care of the person with dementia in the last years of their lives outside of hospital. Only the poorest will receive financial aid, and those providing the care, such as care homes, say that the State cash provided for poorer people does not even cover the cost of care. Care homes are often vilified for cashing in on the needs of older people and not giving good care. In truth, with nearly half a million care home beds in the UK, it is amazing how much is done by them for so little.
So, this Christmas, I’d like us to stop for a moment and think of those people, mostly women but also men, who will wake and wash older people in care homes on Christmas morning. They will wish them a Merry Christmas, and help them to open gifts that the staff have bought for them. With turkey and trimmings they’ll nourish and entertain, they’ll pull crackers and put on paper hats, and then they’ll maybe go home and do the same for their family. Or maybe after a family day, they’ll go to work and watch over the sleep of people who, near the end of life, need to be cared for throughout the day and night. Was there ever a finer calling? God bless them every one.