Dementia diagnosis and suicide
Suicide is a very controversial if not taboo subject in many societies. However, over the last few years, I have come across the occasional reports of suicide in people who had recently received a diagnosis of dementia. But what is the scientific evidence whether people are more likely to commit suicide after a dementia diagnosis? And which factors might play a role that someone commits suicide after a dementia diagnosis? Most importantly, are there are any measures we can take to help people considering this tragic option?
Let’s find out.
Suicide is still a taboo subject in many societies with a significant stigma attached to it. In some countries suicide remains illegal and is often disguised as ‘accidental death’. These factors affect how suicide is reported in different countries and likely indicates that suicides are under-reported. It is important to grasp these issues before taking a look at the scientific facts behind suicide, as it highlights that our understanding of suicide remains incomplete. Let’s start with the global numbers of suicide. It might come as a surprise to many, and it was to me, that there are more suicides than homicides worldwide every year. Suicides rank often in the top causes of death across many countries with global rates hovering around 10 suicides per 100,000 people.
However, this average masks large suicide rate variation across countries, ages and genders. Certain countries such as South Korea, Japan, Greenland or South Africa are most years within the top 10 of suicide rates for each country – not a statistic a country proudly announces, I presume. By contrast, for example, some Eastern Mediterranean countries often have the lowest rates of suicide. But again we need to be careful interpreting these numbers since how suicides are counted might differ across countries.
Besides the geographical variation in suicide rates, there is also a large difference between genders across countries, with men in most countries having nearly double the rate of suicide than women. This gender gap seems to be very much consistent across countries, although there are exemptions, such as China where the suicide rate seems to be higher for women than men. Finally, age is a factor affecting suicide rates. Despite a common notion being that more younger people commit suicide (and for some countries this is certainly true), the more common scenario is for middle-aged or even older people to commit suicide. For most developed countries the suicide rate peaks in middle age but for some the highest rate is in the aged (75 years plus) population (for example South Korea).
So, what are the risk factors for suicide?
Suicide risk factors
The risk factors for suicide are complex and multi-factorial. The World Health Organisation (WHO) has compiled the best evidence for risk for suicide, which resulted in several factors, ranging from the health systems to the individual. The figure below nicely summarises these risk factors in a concise format and also tries to address some interventions to overcome those risk factors.
From a health system level, it seems clear that barriers to access health systems and getting help is a significant risk factor. That might not only affect developing countries but also developed countries with a healthcare system that might be more accessible to people who can afford to access the service to those who cannot. On a societal/community level, it seems that war and conflicts, as well as associated issues with dislocation or trauma and abuse, are strongly related to higher suicide rates, which explains why certain countries (for example Burkina Faso have high suicide rates during war conflicts).
A more general factor is also the level of discrimination and stigma associated with suicide, which paradoxically can increase suicide rates. Often, countries such as Japan or South Korea, which have excellent health care systems and no active conflicts, are often cited as examples of how suicide stigma or levels of discrimination can affect suicide rates. For example, in Japanese society losing one’s job can often be seen as highly shameful not only to the individual but their whole family. This shame can translate to higher suicide rates, in particular in Japanese men who have been made redundant or for other reasons feel ashamed of having let down their families or even communities. Something related is happening in South Korea, where the rate of suicide in the elderly is one of the highest in the world. Several studies have found that this is mostly due to older people in South Korea not wanting to become a burden to their families or children. They actively choose therefore suicide to reduce the family’s burden.
Relationship factors can be a risk factor for suicide, with a sense of social isolation or relationship conflict being the main contributors to suicide rates. In particular, suicide rates in women who are in abusive relationships are very high, as they often do not see another way out of the relationship. Finally, on an individual level, factors such as hopelessness or financial loss can increase suicide. But also medical conditions, such as chronic pain, mental health disease (especially depression) or substance abuse also significantly increase the risk for suicide. Of course, one can see already that some of the above factors are interrelated and it is, therefore, often that a combination of these factors contributes to an individual’s decision to commit suicide.
Then, there are other factors that are more specific to countries. For example, it is well known that countries in higher latitudes (Sweden, Norway, Finland) have higher suicide rates, which can be related to the lack of sunlight during their very long winters. Such seasonal mood disorders have been shown to affect significantly suicide rates with Sweden having had one of the highest suicide rates in the 1960s. However, once the government realised this they rigorously addressed the factors contributing to suicide and, although they cannot change the lack of sunlight during winter, have provided much better support and warning systems in place. This lead to Sweden now having a very low suicide rate and shows that interventions can make a significant difference to suicide rates.
One final, intriguing risk factor is media coverage of suicides, which seems puzzling at first. But there is good evidence that extensive reporting of suicides in conventional or social media can increase suicide rates, following these reports. This has been mostly attributed to ‘copycat’ behaviour in that people follow the lead to do something similar. There is an irony there that making people aware of these occurrences can in fact increase the suicide rate and not deter them. Frankly, when researching this, I became reluctant to publish an article on suicide and dementia as I clearly do not want to encourage suicides. However, in the end, I decided to write this article on dementia diagnosis and suicide as we need to be aware of this risk; only then can we address this risk by offering people the appropriate support.
So, what about dementia diagnosis and suicide, then?
Dementia diagnosis and suicide
It might come as a shock that people will consider suicide when receiving a dementia diagnosis, but thankfully it is a rare occurrence. Over the many years, I have seen people with dementia, I am only aware of maybe a handful of people who have opted either to suicide or the even more controversial assisted suicide (which I am not covering in this article, as it is another very complex topic). Of course, I might be not aware of other people have seen over the years who might have committed suicide. However, in general, it seemed to me just an occasional, tragic case but no systematic pattern.
So, what is the scientific evidence that suicide in dementia is an issue?
Until recently, the scientific evidence was very mixed on this issue, with some studies finding an increased risk for suicide in dementia, while others found no or even decreased risk for suicide in dementia. The contradicting findings might be explained by the fact that the studies were looking at quite different dementia populations, such as investigating this topic only for in-hospital people with dementia or investigating it across the whole dementia duration, which could affect the results significantly.
More recently, research has examined in more detail which factors might influence suicide risk in dementia. What has emerged is that suicide risk in dementia seems to be particularly high within the first 12 months following a diagnosis. This specific timeframe might explain previous contradicting results partially, as the timing of suicide risk plays a critical role. In fact, the highest rates of suicides were found within 90 days of diagnosis, when most people are likely at their most vulnerable.
The other recent research focused on whether suicide rates in dementia differ by the type of dementia diagnosis. There has been over the years commonly suggestions that suicide rates are much higher in frontotemporal dementia than other dementias, for yet unknown reasons. There is now growing scientific evidence that a diagnosis of frontotemporal dementia carries the highest risk for suicide, making it nearly 5 times higher for someone with frontotemporal dementia to commit suicide within the first year after diagnosis, compared to other dementias. The other type of dementia that carries a higher risk of suicide is Dementia with Lewy Bodies with a slightly increased risk for suicide than other dementias. Speaking of other dementias (Alzheimer’s disease, vascular dementia, mixed dementia), although they had lower suicide rates than frontotemporal dementia and Dementia with Lewy Bodies, they still showed a ~50% increased risk of suicide compared to the general population of the same age. An interesting commonality across all dementias was that suicide risk was higher in younger people with dementia, in particular between 65-74 years of age. However, it is not clear at the moment whether the higher suicide rate in frontotemporal dementia, which is younger onset dementia, might have affected these results.
Which of the other known suicide risk factors might affect people with dementia?
There is still too little research to know whether all the factors outlined by the WHO increase suicide risk in dementia. Nevertheless, what is known so far is that people with dementia who have a mental health diagnosis, particularly depression are at a higher risk of suicide than those who do not have a diagnosis of depression. Finally, substance abuse (alcoholism, drugs) or chronic pain also increased the risk for suicide in dementia, mirroring factors which affect suicide rates in the general population.
That’s all very well knowing the risk factors for suicide after dementia diagnosis but how can we reduce the risk?
It is true that identifying the risk factors is only the first step but of course, we want to modify those risk factors as best as possible. The good news is that suicide prevention and risk reduction support and treatments are well established and known to be highly effective. Still, it is not clear at the moment whether the same support and treatment approaches will also work in dementia. Future intervention studies and clinical trials will hopefully show that using existing suicide presentation strategies make a significant difference in dementia as well, in particular after diagnosis. Speaking of diagnosis, the data already suggests that we should screen people with dementia at diagnosis for potential suicide risk to provide the highest-risk people with the best possible support and treatments. This should make a significant difference to people’s lives and would allow them more informed decision-making, instead of seeing suicide as ‘the only way out’.
Overall, it should become clear that dementia diagnosis and suicide is not a talked about subject but should be as it can have devastating consequences for people with dementia and their families. There is a need to have open conversations about this controversial topic and conduct more research in how to identify suicide risk factors and ameliorate them.
Overall, suicide is common in older age and even more common in people who have received recently (<90 days) a diagnosis of dementia. However, there are significant differences between types of dementia, with frontotemporal dementia showing the highest rates of suicide followed by Dementia with Lewy Bodies and the remaining dementias. Having a mental health condition (depression) or chronic pain or a history of substance abuse also increases the risk for suicide in dementia significantly. There is well-established support and treatments available for suicide prevention, but at the moment it is not clear how effective these intervention strategies are in people with dementia. For the future, there needs to be more open conversation about this difficult topic. We also require better diagnostic screening for people with dementia who are at the highest risk of suicide to provide them the best support and treatment.
If you have been affected by any of the above issues discussed, please contact existing helplines to discuss your concerns with trained professionals or contact your GP/family doctor. I provide below links to some UK and US helplines specific to this topic.
3 thoughts on “Dementia diagnosis and suicide”
My take on this is that there is a need for better immediate post diagnostic support. No one’s talked to me formally about my feelings of being told I have a life limiting condition – one that will progress, but no one knows at what speed. People such as myself with an early diagnosis are fully conscious of what Alzheimer’s (or a similar disease) is doing to us. We know what it might do one day. But where’s the counselling about this? Losing part of ones brain, part of one’s personality, is a complex psychological issue – and not one that’s easy to come to terms with.
I have developed my own ways of coping, but it’s a struggle. I get the impression that to the system once someone is diagnosed they are too often ‘left to get on with things’. After all, there’s no cure, so meducine has done its bit – well, that’s not good enough.
Thank you for your comment Willy, really appreciated.
I believe that a huge factor lays with how the diagnosis is delivered. I live with young onset, and I’m a dementia activist. With most of us, our diagnosis was delivered in such a negative manner, offering hope as to quality or expectation of much in the way of quantity. This plunges many unnecessarily into depression and suicidal thoughts. When introduced to the correct peer support, people are able to see that there is quality still left to them and that all hope is not lost. Suicides and depression post diagnosis are preventable.