On Dementia

There has been a flurry of research into dementia. This is most welcome and not before time. Because medical advances are enabling us to live longer, most of us will reach the point when our brains become our weakest link and succumb to dementia. I have witnessed how dementia can destroy quality of life, so anything that can understand it, defer it, ameliorate it or simply cope with it has immense value.

Just this last week I have seen references to two reports about factors appearing to make dementia more likely. One was about sports, and especially sports involving knocks to the head and possible concussions. The indication is that soccer players who head the ball a lot are three to five times more prone to dementia than most of us. I can only imagine what this would imply for NFL players or boxers. It calls to mind those sad last years of Muhammad Ali. It seems to make sense that bashing the brain repeatedly is not the healthiest thing for us to be doing. Within a generation, these sports will be outlawed or have been radically changed. Perhaps in soccer there is already enough relief through using less dense balls with softer impact.

The second report had more subtle conclusions. We have long thought that exercising the brain helps to keep it in shape, hence the craze for mind puzzles like word search or even Candy Crush. That can only be good for the mobile phone generation – so long as those benefits are not more than offset by any damage to the brain from electrical pulses and the like. This report confirmed the benefits of mild brain exercise, but concluded that too much brain exercise may be a bad thing. People with stressful brain occupations seemingly are more prone to dementia.

My guess is that this may be about sleep. Sleep is emerging as critical for health in so many ways. It feels intuitively correct that, since sleep is the sort of cleaning reset function for the brain, good sleep patterns will help to fight off dementia. Perhaps those rocket scientists are thinking so hard and so often that they take their problems to bed with them, and that disrupts sleep and its positive effects.

While it is good to understand the causes of dementia, for now the more urgent priority is what we can do about it. For a life with dementia can be a horrible one.

The clearest symptom of dementia is the loss of short-term memory. We all start to suffer from a bit of that from our fifties or earlier, and initially it can seem rather harmless and even quite funny. At the home where we volunteer, the majority of residents have some issues with short-term memory. Many times we will be asked for a bowl of soup by a resident who had already eaten one just five minutes before and forgotten all about it. At this stage the resident can share the joke: we point out that their soupspoon has vanished to the kitchen and they can accept that they must have already eaten their soup.

But as the short-term memory weakens the impact quickly ceases to be funny at all, and our experience is that the onset can happen within a few short weeks. First the resident can become frequently lost, and anxious about it. Then, they see themselves in a different scenario to the one they are really in, often regressing to moments from their youth.

I liken this to being awake in a dream. We often dream about situations from our past. The resident responds to that situation much as we imagine ourselves doing in dreams. Sadly, for many of us our most commonly recurring dreams recall stressful situations requiring urgent action, such as getting lost as a child or being betrayed by someone like a parent, or reliving situation where they may have behaved shamefully. As dementia takes hold, residents imagine themselves in these situations more and more frequently, and they become stressed, angry and even violent as a result.

Much though I have always admired the nuns and staff at the home we visit, I used to think that they sometimes did not treat all their residents well. Often you hear desperate cries emanating from bedrooms, with nobody seeming to rush to help. On other occasions staff could appear brusque or heartless. Now that we have witnessed late stage dementia ourselves we know better. If such a resident calls for help, it might or might not be possible to mollify them. But the likelihood is that the scenario is repeated only a few minutes later. Short of sitting with somebody 24/7, requiring an infeasible level of staffing, what can they do?

This is the real world described in the best article I have read about dementia, in last week’s Guardian Weekly by Sarah Boseley. The author struggles to help her own mother and writes with compassion and intelligence. It emerges that good practice dementia care has progressed, albeit slowly. My grandmother had dementia in her later years, and, like many, ended up in a cruel home, often chained to a chair to prevent her doing anything silly. What a miserable life that must have been.

But most options involve impossible levels of personal care. The article describes how societies evolve from one where women stay at home to care for elderly relatives, then employ low-cost home help for the task from developing countries, then resort to care homes. Even the best care homes lack resources for the level of personal care needed. So sometimes residents are still restrained, and often they are heavily sedated.

When resources are available, it is obvious that the best choice involves plentiful social interaction. Our own home organises bingo and crafts and prayer and puzzles and many other distractions and brain stimulation, but this can only defer the day when one-on-one care becomes necessary.

Even giving that care is difficult. If I sit with a suffering resident for 30 minutes, it can seem like hours and severely test my ability to find distractions and conversation that achieves more good than harm. Here again good practice has evolved. Before, carers were told to be brutally honest. If a nonagenarian resident is looking urgently for her mum, we were supposed to point out that mum had been dead for fifty years. But good practice now is to minimise suffering. One professional quoted three golden rules: don’t ask questions that may cause distress; listen and only offer information that will make them feel better; do not contradict. I find these helpful, and wish that my volunteer training had included some specific advice for handling such situations. But I can promise you that, golden rules or not, it is not at all easy – and I can always go home when I have had all that I can take. It is a bit like sitting with a three-year-old with toothache or earache – hard work and often depressing.

Boseley also describes some modern concepts for community living for people with dementia, such as a village in the Netherlands that is part of regular society but with external walls that residents cannot get past. To me this sounds brilliant but not scalable: it involves a lot of capital and plenty of training too.

But somehow we will need solutions. More of us are living longer, dementia will only become more common, and we will need more homes with smarter designs. Perhaps better drugs can help – at the moment homes seem to use general sedatives like morphine that surely have side effects. Perhaps more people can join the army of carers: I love the idea of siting care homes with nurseries, and I read recently that in the Netherlands they are even experimenting with using paroled prisoners. I applaud Boseley for a very balanced and well-researched contribution to this urgent debate.

Now, where did I leave that soup?