Dementia—why it’s not a memory problem
People tend to think about memory impairment as the most devastating symptom of dementia, but for many of those affected and their families, it’s not even in the top five most bothersome symptoms. Those include sleeplessness, getting lost, anxiety, agitation, and being vulnerable to exploitation by others. It is a bit problematic that we think about dementia as primarily a disorder of memory.
People get their idea of what dementia is from the media, and other sources which are not the direct experience of people with dementia or their carers. There are organisations that “speak for” people with dementia, and those organisations often focus on it as a memory problem and by necessity, give voice to younger people or those in the early stages, so they’re not talking up the other stuff. The place you go for diagnosis is called a “memory clinic” and the publicity often asks people if they are “worried about their memory”. Of course, memory issues exist, but when unpacked they may sometimes be instead learning problems eg when the nurse gives you the call bell and says, “Press this when you need me,” the problem is not that you forgot, the problem is that you did not learn this new and quite frankly unusual, way of communicating your needs. You can still remember things you learned a long time ago, but can’t easily learn new things.
“My concern is that if we only focus on the memory issues, we are not tackling the problem of dementia in the place where you can make the biggest difference. When resources are stretched we have a duty to focus on what has the biggest positive effect.”
My concern is that if we only focus on the memory issues, we are not tackling the problem of dementia in the place where you can make the biggest difference. When resources are stretched we have a duty to focus on what has the biggest positive effect. So simply improving memory might not make the biggest difference to lives. You often see excited claims about things that seem to have improved or “brought back” memory. I’m a bit skeptical about that, and also the worth of that.
The numbers of people affected are huge and growing and the cost of caring is more than cancer, heart disease and stroke put together. If you want to manage the cost, before it becomes unaffordable, for society (and for people who need care, who may have to sell their house to pay for it) you have to decrease or delay the dependency of people with dementia. You want to keep them well as long as possible. At home, if you can; then in supported housing; then in a care home at the end if needed. When you ask why people end up in a care home it is more often because of a fall, or incontinence, rather than memory problems. When you ask relatives what made them unable to care at home it is more often nocturnal wandering, aggression or agitation, rather than memory problems.
The difficulty that arises from a focus on the memory problems is that you not focussing on how to prevent institutionalisation because failure of memory is not what leads to it. The reason for a focus on delaying institutionalisation and dependency is that we can’t afford financially to push people downhill faster than necessary and quite reasonably they don’t like it when we do.
For each of the major symptoms that people find difficult there are at least ten non pharmacological solutions. There is not space to list them here. However, I can make a few general points. The many problems that carers and care workers find hard to manage, and which cause people with dementia to be sedated, or restrained, or put in a home, have stress (or even distress) at their root. So anything that you can do to reduce stress will have positive effect on dementia. Stress is caused in a number of ways. Dementia causes crushing fatigue. The person may not eat or drink properly or get enough sleep. Well-meaning people might argue with them to “set them right” when they say things that are clearly wrong. The person may have normal changes of ageing such as physical and sensory impairment but a reduced capacity to adapt to them. They might be in pain, or constipated and too muddled to sort themselves out. Simple changes can make a difference. Don’t argue. Push fluids. Get them to eat well, and take exercise. For some people, just increasing the light level can make a bigger difference than the medication does. Even the best medication will be reduced in its effectiveness if the person is distressed by avoidable things as above. Focus on what makes a difference and welcome any information based on reality about what will do that.
