My recent entry on the scientific evidence behind reminiscence therapy has generated interesting comments and feedback. In a way, this should have not been a surprise, since the science behind reminiscence therapy is – so far- pretty weak, despite it being so commonly used. Two points raised by some of my Twitter followers, in particular, caught my eye: 1) ‘It’s all about the individual, not the science’ and 2) ‘Psychological and art therapies are different and do not require scientific evidence to work’.
Both very valid points, which made me ponder about them during my mince-pie induced somnolent state over Christmas. In the end, I decided to write a reply to those points via a blog entry – the 280 character limit of Twitter makes it very hard to explain my thoughts in more detail.
First off, it’s all about the individual, not science.
The individual vs. the science
This must be one of the most common reactions I get when talking to the public about dementia science. Often at the end of my presentation, people get up and say something along the lines ‘that’s all fine for the science to show this but doesn’t apply to me/my partner/the person I am caring for/the people I am seeing professionally’. Fair point.
It is very common to hear this distinction and it conveys that the science does not apply to each individual. I completely agree with that and few people in science would disagree with this statement. But this distinction exposes a gap between the individual and the systematic, represented by the scientific evidence – or if you feel in a philosophical mood you could call the distinction dialectic. Of course, this gap is not a new problem but ancient in its origin, ‘How much does common evidence apply to my own life/existence?’.
In its essence, the distinction pits the individual against the systematic – or if you like generic. We all want to be seen as unique, even though the evidence (sic!) is often that most of us have similar wishes, desires and goals. It’s only human to see ourselves as unique individuals, which is perfectly fine, however, this perceived individualism becomes an issue if we want to prevent, diagnose, treat or care a disease, such as dementia.
Diseases affect the underlying physiology of our body, and the physiology is identical across our species, if not all other mammals on this planet. For example, dogs can develop dementia and so can mice. So much about being individual!
There is therefore an inherent clash between the individual having a disease and the underlying biological processes which are the same across all individuals. It is clearly upsetting for people to be seen ‘just’ as all the other people with Alzheimer’s disease. Aren’t they individuals and do they do not differ from other people having the disease?
Indeed, that is certainly true.
So, how do we resolve this dichotomy between the individual and the systematic?
As so often in life maybe there is no real dichotomy at all? Do we really need to put the individual against the systematic how we diagnose, treat and care for dementia?
The answer, in my opinion, is that there doesn’t need to be this dichotomy of individual versus systematic. Instead, it should be about using individual and systematic approaches towards the prevention, diagnosis and treatment and care of diseases, such as dementia.
What do I mean by that?
To me, the best approaches combine the individual with the systematic to create the best health outcome for people. It means one should know or be aware of the systematic evidence and then tailor it to the individual.
Of course, many clinicians and health professionals do this already by having received extensive training and follow diagnostic & treatment guidelines by national bodies, such as NICE in the UK or the NIH in the US. The training and guidelines teach ‘what works’ based on the systematic/scientific evidence base. They can then tailor their expertise towards each person with dementia individually to get the best outcome. However, a key aspect is that they have received training and follow the guidelines in the first place, otherwise the results of their diagnosis, treatment, therapy or care will indeed differ from individual to individual. This might result in a highly variable health outcome for each individual.
It is, therefore, the combination of systematic evidence and the evaluation of the individual which is key to receiving the best diagnose, treatment and care for any disease. If systematic evidence is not followed or does not exist, then the results of any therapy will be highly variable between individuals, benefiting some but not others.
This makes a nice segue to the reminiscence therapy findings, which indeed show that the results of this therapy were highly variable across studies. It suggests that some therapists took a more systematic approach towards reminiscence therapy than others. It further suggests that to provide benefits of reminiscence therapy there needs to be better training and evidence to show ‘what works’, otherwise the outcome will be too variable to the well-being of people with dementia.
In the end, the individual and the systematic are just different sides of the same coin and we need both to have the chance of best success in providing treatment of care for people with dementia. So, it is not good enough, in my opinion, to argue that it is ‘all about the individual and not the science’. Such an approach clearly misses the point and ignores all the systematic evidence provided by the expertise or training of the healthcare professional or therapist. If we do not have the systematic evidence as a baseline, then any treatment or care will remain highly variable for each individual as we are literally ‘re-inventing the wheel’ for each person.
Let’s turn now to the second point raised during the debate.
Psychological and art therapies are different and do not require scientific evidence to work
Another very interesting point, which I heard many times over the years. Since psychological and art therapies do not really impact on the physiological processes of the disease, why should we measure them with the same scientific rigour?
Maybe they are right?
No, they are not!
In fact, this is a very dangerous proposition, to give psychological and art therapies a more lenient approach towards scientific evidence. The danger is that this becomes a very slippery slope towards having to accept any ‘therapy’, regardless of how potentially esoteric or even dangerous it is. For example, some people suggest using crystals or energy fields to ‘cure’ dementia, despite there being no scientific evidence showing their benefit, not to speak of a ‘cure’?
How can we tell if what those people propose as therapies are real or simply quack? The difference is to use scientific methods to measure whether those therapies make in fact a difference to people with dementia. To generate scientific evidence for any proposed therapy allows us to determine whether it works or not. Without scientific evidence, we simply have to take people’s word for it that what they are proposing. Shouldn’t that be enough?
I wish it was like that but in the era of fake news, we are all bombarded with fake scientific information – the current COVID pandemic is the perfect example. Which information can we in the end believe?
In my opinion, it is only those therapies which are backed up by science which should be trusted and recommended to everyone. But please do not misunderstand me that I am against psychological or art therapies. On the contrary, I am a big proponent of those therapies, but only those that are backed by scientific evidence.
Should we therefore only provide psychological and art therapies which have scientific evidence backing them up?
My answer to this is yes. In the end, with great power comes great responsibility. Administering a therapy exerts great power over the people undergoing it – even if it is just the expectations of people on what the therapy might deliver them. Basing psychological and art therapies on scientific evidence is, therefore, of critical importance, as we can demonstrate then that they make a difference to people with dementia on a systematic level. This means we can recommend them to anyone having the disease, while at the same time still tailoring it to the needs of the individual.
In the end, shouldn’t it be about getting the best health outcome for the person with dementia, which we can achieve by using the systematic evidence and then tailoring it to the individual?
5 thoughts on “The individual vs the science”
Sorry, having dementia and having worked within the dementia care sector, ie real life, you are wrong. There are are over 100 different types of dementia, eg I have PCA, and what works for one person will not work for another. We, with dementia, know what works, ask us individually not en bloc.
One does not need to use and waste precious academic resources to study people with dementia as a bloc, care givers should ask each individual.
I see this as an excuse to find and spend precious research money. Those of us with early onset dementia should at least be asked. I go further and am doing research, funded by a non academic funded (surprise) to,show,that we can and should do it.
Thank you for your comment. I think we have to agree to disagree on this point.
There are not 100 different types of dementia, there are ~15 clinical types and 4 proteins for dementia, plus some additional genetic types. So, what works for those clinical types of proteins will work for most people – maybe not everyone but for most. But to say that what works for one person will not work for another, is not correct, in my opinion.
However, I agree with your point that people with dementia should be involved in the research process. Absolutely! In fact, this is already done and all our research projects involve either carers or people with dementia. It is clearly important that the scientific research conducted is relevant for people with dementia.
I don’t agree with your notion that research money spend on ‘group studies’ is wasted. Actually, this is often the first step for us to investigate whether the effect or therapy we measure is real and effective. Only once this has been established one can tailor it to the individual – which is exactly the point I made in my blog entry.
First; can you see that us with dementia should be able to first, be actual researchers, even if not “qualified”, meaning giving us funding. Second; do you think we should be asked what the priorities in research should be. Also, you are doing medical research, which is where the big bucks are (any cure etc will give Big Pharma huge profits). I want the money to enable those with dementia to decide priorities and to enable them to do what they want as individuals , not what group think says. Carers on the ground, like I did, can see what is effective to a person without relative strangers altering the environment.
I am not sure you are aware of this but in fact, those opportunities already exist for the public. For example, see the following weblinks:
Just to say we involve people with dementia or carers in all our research projects, so that it is research with them not for them. Finally, none of my research is Pharma funded, instead, we are supported by the government and charities on projects which are based on the research priorities suggested by people with dementia, such as:
PS; I know I can be a pain and don’t use words wisely, which is really annoying as I used to be a good wordsmith, but I do enjoy discussing dementia with others, sorry.