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I wrote about apathy for DDD in 2015* but the topic is still important and even featured in today’s Daily Mail!** This leads me to pick up the quill again:

Apathy is a common symptom throughout the course of dementia. It can also be associated with many other types of brain disease. By its nature it can be easily overlooked and hence its importance has been underestimated until recently. People have perhaps been more interested in looking at more visible changes in behaviour, such as agitation or aggressive behaviour.

A recent paper, from researchers in Holland, is quite correct to make a distinction between apathy and depression. The two may occur at the same time, so that apathy is often a symptom of being depressed and people with apathy can of course become depressed. But they have a different neurological basis and different courses. For example, apathy does not respond especially well to treatment with antidepressant medication.

The Dutch study was conducted with nursing home residents and therefore the authors were interested in the effects of apathy on mortality. However, our research and that of others shows that apathy can arise any time during the course of dementia. It’s not just a problem with dementia in care homes.

Apathy is extraordinarily frustrating for families and carers, since it appears that the person with dementia is perfectly able to do things (make a cup of tea, turn the TV on and off, or change their clothing) but instead they just sit there and do….nothing or very little. Often, carers will interpret this as being due to wilfulness or to gain attention, but actually the person has a problem with initiating actions. In technical language, they have a problem with executive functioning – or, as I often explain this to relatives, it’s like the engine just won’t start.

My colleague, Rianne van der Linde, did her PhD looking at the course of behaviour changes in dementia. We looked both at the published literature and also data from the MRC funded Cognitive Function and Ageing Study (CFAS) and we were struck by just how prevalent and persistent apathy was. For example, once apathy had occurred, two-thirds of people still had it 12 months later. And we found that, even with a sample of people living mainly in the community that people with apathy were 3 times more likely to die than those who didn’t have the symptom. That’s certainly consistent with the findings in the paper by Johanna Nijsten and her colleagues.

What’s the mechanism by which apathy leads to death? One factor is that apathy reflects damage to the fronto-striatal circuits in the brain, so if you have apathy and dementia, then you have evidence of brain damage in different areas of the brain. This is borne out by people with apathy and dementia having more severe cognitive and more severe functional impairment than those who don’t have apathy. The second factor is that if you are apathetic, you don’t move around as much so you are at more risk from the consequences of being sedentary, e.g. losing mobility, developing pressure areas, urinary and respiratory infections, circulatory problems, and so forth. The combination of these things is likely to shorten your life expectancy.

In summary, death results from having (a) more extensive brain damage and (b) being sedentary and suffering the consequences. That suggests to me that someone should do a clinical trial of measures to make people with apathy more active, or maybe they are already planning to do so.

*Link to Tom's previous blog on apathy: https://idea.nottingham.ac.uk/blogs/posts/apathy

**Link to the Mail article: http://www.dailymail.co.uk/health/article-4773340/Study-finds-elderly-life-care-homes.html