Ten things we all need to know about dementia

Over the last few years dementia as an illness has come out of the shadows. We recognise it more openly in society, the scientific research community is more focused on it and ultimately many more of us are exposed to it through elderly relatives. Here are the ten things we all need to know about dementia.

1. Dementia is not itself a specific disease
Dementia is not a specific disease but rather a medical term used to describe a set of neurological symptoms caused by a group of brain disorders including Alzheimer’s. The most common symptoms are memory loss, confusion, getting lost, difficulty with daily tasks and mood changes. It can reach the point where dementia sufferers don’t know they need to eat or drink and dehydration is a major concern for many people with dementia.

2. Alzheimer’s is the most common form of dementia but there are several others
Alzheimer’s disease is the most well-known cause of dementia, and the most common, but there are several other discrete pathologies of the brain that are dementia causing illnesses. These include vascular dementia, dementia with Lewy bodies, fronto-temporal dementia (also known as Pick’s disease), Parkinson’s disease dementia, Huntington disease dementia, amyotrophic lateral sclerosis and the recently identified LATE form of dementia that mimics Alzheimer’s. Although these different illnesses may affect different parts of the brain, all generally result in brain cell death and result in similar resultant symptoms. Dementia may also be caused, even developing many years later, by traumatic injury to the brain either from a single incident or through repetitive brain injury as is being increasingly recognised among certain sports players.

3. Dementia is not an inevitable outcome of old age
It was originally thought that dementia was merely a symptom of ageing, an inherent decline in cognitive capability that necessarily flows from old age like greying hair and the loss of physical strength. Indeed, old age remains the single biggest risk factor for developing dementia – probably because the changes in the brain that cause dementia appear to start in mid-life, even though caused by other factors – but it is not an inevitable outcome of ageing. This has now been disproven by research and we know that many people who live well into their 90s and beyond have brains that remain remarkably clear of any signs of dementia.

4. Dementia causing illnesses are now the leading cause of death in the UK
Dementia illnesses now result in more deaths in the UK than any other disease including heart disease, any individual cancer or strokes. Although all cancers combined still account for more deaths – and as recently as 2014, twice as many – dementia is projected to overtake all cancers combined in the next decade or two. The growth rate is staggering, with mortality rates from dementia effectively doubling in the last 10 years.

In fact, a major reason for this rapid increase is statistical. In 2011, the Office for National Statistics (ONS) made changes to the way deaths due to dementia are recorded to better reflect guidance from the World Health Organisation. Since then when a person dies with dementia, doctors can report it as the main cause of death on their death certificate. Previously, the immediate cause of death would be listed, such as a fall or an infection like pneumonia. But in many cases, these illnesses are a result of the underlying dementia causing increased frailty, a weakened immune system or problems with swallowing. The ONS also updated their coding system so that vascular dementia would be reflected in the dementia category instead of the stroke (cerebrovascular disease) category.

More fundamentally, the longer-term trend reflects our increasing longevity. Whilst not an inevitable outcome of ageing, as we live longer the risk of developing dementia increases.

5. We do not really know what causes dementia but we are unearthing clues
At the moment we can’t say with any precision why one person develops dementia while another person does not. However, it is becoming clear that a combination of genetic, lifestyle and environmental factors, together with age, are material risk factors. Research is on-going into certain identified genetic risk factors that indicate a predisposition to certain dementia causing illnesses. Many studies have also been published and continue to be undertaken showing the extent to which our lifestyle, especially our diet, physical exercise, sleep and stress levels, can increase (or decrease) the risk of developing dementia. And age continues to be the largest single risk factor, even though it is not the underlying cause per se. For example, in the US, the number of people with Alzheimer’s doubles every five years from age 65 and about one-third of all people age 85 and older may have Alzheimer’s.

6. There is no known cure for dementia
Dementia is the only major cause of death in humans not to have a known cure. As of today, if you develop dementia, absent another intervening cause of death, it will eventually lead to your death. Thus far, despite significantly increased funding and research activity over the last few years, a ‘cure’ remains elusive. Indeed, it is unlikely that there will ever be a ‘cure’ for ‘dementia’ given that it is caused by a range of underlying illnesses and the fact that dementia generally reflects brain cell death which cannot be reversed. Much of the research is focused on Alzheimer’s which is the most common cause of dementia and the state of the R&D is sometimes likened to the search for an HIV cure in the 1980s and 1990s. However, despite the increased focus, funding for Alzheimer’s research is still dwarfed by the amounts spent on cures for cancer.

While identifying a definitive cure is the ultimate goal, identifying drugs that merely slow the pace of onset of dementia is also seen as a major milestone. Analysis by Alzheimer’s Research UK argued that a drug that delayed the onset of dementia by five years would cut the number of people living with the disease by a third and alleviate the economic cost by 36%. As this article was being written, a US bio-tech company made the first announcement of launching such a drug on the market.

7. Despite the absence of a cure, prevention is still possible
It is becoming increasingly evident that lifestyle choices and environmental factors contribute materially to the risk of developing dementia later in life. According to the Lancet, it is possible to prevent or delay the onset of dementia in as many as 35% of people through modifications to risk factors including increased child education and reducing hypertension, hearing disability, obesity, smoking, depression, physical inactivity, diabetes and social isolation. There are now many studies showing that, as with so many other illnesses, regular physical exercise (of body and mind), improved nutrition, good sleep and reduced stress will materially reduce the risk of developing dementia. Research into the human gut microbiome suggests that enhancing the diversity of bacteria and other microbes in our intestinal tract may result in lowering the risk of developing Alzheimer’s or slowing its onset. Another important take-away from the research is that early diagnosis can help with mitigating the onset and impact of dementia by slowing the progress of the disease and at a minimum preparing for it with those around us.

8. The explosion in diagnosis and absence of a cure place a huge responsibility on care
A diagnosis of dementia is currently a lifetime diagnosis and the support of a caregiver will become inevitable at some point. The first line of caregiving support is usually a family member, which may be a life-partner or other immediate family member. The cruelty of the disease is often most acutely felt in this situation as a loved one changes from the closest of companions into a potentially antagonistic stranger, with no recognition for the past years spent together. Moreover, in the absence of control of bodily functions, carers are required to attend to the most basic needs of patients often to the immense embarrassment or shame of the sufferer. It is no surprise that family carers themselves are at a high risk of depression.

Caregiving is also a healthcare service delivered by private and public providers, either at the patient’s home or in a residential facility. However, public resources for dementia care are massively underfunded in the UK. Unlike virtually all other illnesses of aging, the UK’s NHS does not support treatment or long-term care for dementia sufferers. As a result, long term dementia care is primarily the responsibility of local authorities. If no cure is found, the dementia care crisis will swamp publicly available funding. And in the absence of a new national funding plan that supports benchmark care for all sufferers, much of the financial burden falls on the individual with the disease or their family.

9. In other countries euthanasia and assisted dying allow sufferers to elect a dignified death
In the UK the law does not permit euthanasia or assisted dying although there are signs that attitudes may be evolving, partly in response to the explosion of dementia diagnoses. In other countries, a person deemed legally capable of making the decision can elect to end their life in a dignified manner before, in their minds, it is too late and advanced dementia takes hold.

We do not really know the extent to which those with dementia suffer, despite some level of depression being a symptom for some, because no one returns to full health from a dementia diagnosis to describe the effects. However, we do know that dementia slowly robs a patient of their mental and physical faculties. This includes the ability to control bodily functions and cognitive abilities such as memory, mental agility, sight, hearing and speech.

10. What should I do, if anything, if I am concerned about developing dementia?
It is estimated that one in four people in the UK over the age of 55 has a close relative with dementia and that it affects one in 14 people over the age of 65 and one in six over 80. It is not surprising that it is the disease that people of these age groups fear the most. Some of the underlying risk factors such as genetics, gender (it affects more women than men) and possibly ethnicity (for example, South Asians appear to be more prone, especially to vascular dementia, although a major part this may prove to be a function of lifestyle factors such as diet) are beyond our control. However, there is also overwhelming evidence that lifestyle factors significantly increase our chances of developing dementia later in life. This can be detected through high blood pressure, high total cholesterol, obesity and Type 2 diabetes all of which are material risk factors for dementia. Steps we can take that will reduce the risk of developing dementia include giving up smoking even later in life, good diet especially to nourish our microbiome, reduced alcohol consumption, regular exercise for both body and mind, maintaining a healthy weight, being social, reducing stress factors, and getting good sleep. Research and clinical studies show that adopting at least three positive life-style adaptations from not smoking, reduced alcohol, healthy diet and regular exercise makes a significant difference versus adopting just one or two of these lifestyle changes. Such changes will also reduce the risk of other diseases including heart disease, type 2 diabetes, several cancers and stroke.

Tom Speechley, SX2 Ventures, October 2019

At SX2 Ventures we support innovation in the business of human care. One of the areas we are focused on is the design of “next generation dementia care facilities” that combine the very latest evidence-based practices and technologies to improve the quality of care residents receive. The innovations we seek include those that reduce the cost of providing care so that more citizens have access to benchmark quality care. Whilst all of our projects must generate a profit, this is only one metric of success alongside benefit to humankind and experiential value creation.