Therapy or distraction? Art for People with Dementia
Frequently there are stories in the media reporting the new “therapies” designed to aid dementia, but these can be too good to be true
Even lacking adequate research, certain sections of society do not pause their enthusiasm for whatever therapy is the new big idea
It is worth remembering the difference between cultural needs and therapies
In the grey literature, that is lay media and the bulletins of voluntary organisations and care providers, there are often repeated claims that art is a “therapy” for dementia. Unfortunately, these claims are not supported by research. In a Cochrane review, one high standard of evidence in health science, which looked at art as therapy in dementia (Deshmukh, Holmes and Cardno, 2018) the authors explain that arts-based therapies are commonly thought of as ways of dealing with symptoms of dementia. Art “as therapy” is assumed to slow cognition decline, tackle behavioural symptoms and improve quality of life. On examination of the published reports on the subject, the authors conclude that there is ‘insufficient evidence about the efficacy of art therapy for people with dementia.’ They note that in studies which claim therapeutic outcomes, the quality of evidence is ‘very low.’ This is unfortunate because the claims that are made in support of art as a dementia therapy are so pervasive, and on an emotional level, persuasive. But they are clearly not based on what is normally considered as evidence in health care.
Fake news reporting dementia research
The aim of any therapy in dementia could be to prevent, or delay symptoms, in the absence of a cure. There is a common phenomenon in news outlets, where a headline will announce a breakthrough in dementia research, but further on the story reveals that the research is still at a very early stage, or inconclusive, or the claimed outcomes are wild extrapolation from a relatively insignificant discovery. Like most fake news, this is not the fault of the researcher, but a version of their research written by the person who writes the headlines with a view to selling the news. One example is a headline from Science News which claimed to be revealing the discovery of a new treatment for dementia ("New Treatment for Dementia Discovered: Deep Brain Stimulation" 2019). That turned out to be an interesting neurological finding about how to increase brain volume in rats that did not have dementia. It was nowhere near being a dementia cure.
Overblown reporting of clinical progress is not unusual and causes cruel disappointment to people with dementia and their families (Andrews 2019). Because the sources of fake news are so widespread, it is impossible to control their publication. This has given rise to guidelines from the Alzheimer’s Society in the UK about how people should read these reports. ("How to Spot 'Fake News' In Dementia Research" 2019). This guide warns readers to ask how the research was conducted, the number of people who were involved and whether the reporting is only bolstering the worldview of the person funding or reporting it. These questions are relevant for underlining the problem with most research on arts as therapy.
Research into the effects of art in dementia suffers from the same drawback as any dementia research, because normal research paradigms make it difficult to prove effectiveness of interventions in dementia. This is partly because “dementia” is a word used to describe a wide range of progressive symptoms which are present in different ways in each person with dementia, depending on their life circumstances and the underlying disease, so it is virtually impossible to get a homogeneous group of subjects. The differences between people with dementia are enormous. That makes it hard for a researcher to choose an outcome measure and to report differences between the intervention group and a control group. By contrast, in researching a medication for kidney disease, for example, researchers would be expected to use a homogeneous group of subjects with no other significant disease that would confound the results. Few people have only dementia and no other significant health problem, such as age-related frailty.
Rigorous definitions required for a meaningful conclusion
Even if this were not so, research on therapeutic effect in any condition needs larger cohorts and more rigorous definitions than most art projects offer. There is a great variety in the quality and content of activities that are loosely defined as ‘art therapy’ in the literature. Published reports are about widely diverse inputs described as art. One measures the effect of six one-hour visits to a museum in a cohort of 44 people in one location. (Schall et al. 2017). Another looks at Singing for the Brain, a trademarked Alzheimer’s Society choral project which is widespread across the UK in many locations (Osman, Tischler and Schneider, 2016). These are very different.
The experimental subject with dementia across a range of projects may create, participate or observe something familiar or in a familiar medium, or be exposed to something completely new, which might not necessarily be regarded as “art”. That’s a very wide range of activity and other parameters. As stated in Gifts of the Muse, a report on art in health, ‘In dance therapy for example, there is typically movement in response to music, but this is not necessarily dancing.’ (McCarthy et al. 2005)
Singing for dementia and other reported miracle “therapies”
Singing, though publicised on public television in the UK and widely hailed as transformative, has not been evaluated in any study good enough for the Cochrane review. The museum visits evaluation does not examine whether gazing at plants in a garden centre would have the same effect as gazing at artefacts in the museum or whether the enthusiasm of the organisers and the respite and relief of carers influences their perception of outcomes from the intervention. Failure to take into account confounding factors such as the socioeconomic, educational and health status of the carer and care worker or the person with dementia invalidates firm conclusions, no matter how emphatically the supporters of art as therapy reaffirm their faith in it. There is confusion from the implied suggestion that rekindling someone’s memory for a song will make any difference to their global cognitive impairments.
Debatable evidence does not stop the enthusiasm for the next big thing in dementia “therapies”
Especially if the evidence is debatable, it is not in the interest of artists to question it, because a belief that art is a therapy opens potential streams of funding for their work. Nor is it in the interest of care organisations to question it, because at the very least an art project is a diversion or distraction from daily life. The appetite of arts funders for evidence of social worth of art projects creates a conflict of interest in evaluation which can give the impression of collusion, or at least, failure to challenge received wisdom. For example, a review of Singing for the Brain states boldly ‘Indeed, music therapy is now a valid treatment option’ (Osman, Tischler and Schneider, 2016). “Treatment option” is a term to be used sparingly. It doesn’t just mean “a harmless thing you can do.”
The attempt to prove art is a therapy is often circular, citing other sources who have already claimed it without rigorous evidence. In their attempt to support this statement, authors cite a range of papers including one (Sung et al., 2011) which itself concludes ‘the reduction of agitation between the two groups [the group who received a musical intervention and a control] was not significant.’ It does not help their argument if even evaluators attempt to support their premise with research that itself suggests the opposite.
Calling music therapy a ‘valid treatment option’ engages medical terminology to support something that is a human need for everyone, whether or not they have dementia. ‘Treatment options’ are usually what clinicians formally offer to patients. This use of medical language does not fit well in the dementia community where politically correct people with dementia are shocked to be described as “suffering” or even “patients”. There is magical thinking in the language of “therapy” which is exposed if you replace “music therapy” with “retail therapy”. “Retail therapy” is a light-hearted way of describing how a shopping trip can distract someone from their troubles through going out and about and buying a treat. It would sound odd to claim that “retail therapy is a valid treatment option.” Another human need is food, and we would not call mealtimes “food therapy sessions.” Using medicalised language about dementia and conflating it with the fact that the arts are a human need misleads people including policy makers who direct the limited resources that are available for responding to dementia. It elevates art interventions to a clinical level that requires more rigorous evidence. This is not an argument against improving the access to art for people who are affected by dementia. It is an argument against describing it metaphorically as a treatment, then behaving as if that was not a metaphor, but literally true. It is impossible to make an argument against the intrinsic value of any artistic endeavour and experience except in terms of competence, taste or fashion. Art in its many forms is an important distraction for anyone, whether or not they are unwell.
Therapy is not the same as cultural needs
Equating the provision of ordinary but important human cultural needs with “therapy” is a fatal distraction for health policy makers. It gives them the impression that treatment is being provided when it isn’t, and this arguably suppresses their drive to seek out or provide further interventions for which there really is evidence. Mine is not an argument in support of the medical model of dementia or against the definition of dementia as a social construct. It is an argument against the idea claiming that art has positive clinical effects – by definition “a therapy” - while simultaneously defining dementia as a social construct. It’s just a muddle. The attempt by any research to attribute ‘an absolute and transcendent value to the arts’ has been described as a ‘fool’s errand’. (Stevenson 2017). He goes on to reiterate DiMaggio’s fallacies outlined in a Rand research report. ‘The fallacy of homogeneity of “treatment”, the fallacy of homogeneity of “effects” and the fallacy of linearity of “effects”’, saying that they are embedded in the discussion of cultural value, but ‘overlooked for the sake of more advocacy-friendly claims.’ (McCarthy et al. 2005)
In editorial discussion in the journal Arts and Health, the tension between art for its own sake and art as an instrument of change is further explored. The authors talk about the importance that funders should recognise ‘that simplistic attempts to capture value, perhaps in the form of evidence of health outcomes, in order to make the case for funding of arts are unconvincing: these may overlook the intrinsic value of participation.’ They quote the Cultural Value Project which stated a ‘need to begin by looking at the actual experience of culture and arts rather than the ancillary effects of this experience.’ (Daykin, Clift and Camic, 2013).
The value is not to the patients but to the carers and care workers
There is a significant emotional reaction from carers and care workers when people with dementia are discovered to have a better memory for sung lyrics than other verbal memories. The observers feel that memory has returned or otherwise improved. It feels uncharitable to explain that singing is not reducing the dementia symptom of memory loss but that rather, for this person, songs were not yet lost, though you did not know this till you offered a singing opportunity. The video (Original) Man in Nursing Home Reacts to Hearing Music from His Era" 2019) has been seen over 2.5 million times on the internet, and the emotional commentary implies that an improvement in the man took place as a result of the music. Rather than shedding tears watching him take such huge pleasure in his music, one might be tearful that no one thought of giving him access to his music sooner. And talk about how or whether he consented to become such a side-show.
Not all art activity is harmless
The idea that something is better than nothing appears self-evident, and art activity may be regarded as at least harmless. However, if the “something” is using up resource that could be used more effectively, it is misuse of resources. And not all art activity is harmless. People have to live with the amateur murals that an art project may have put up in a care home, no matter how aesthetically alarming they are. Residents may wonder where the kind people who used to come and sing to them have gone, when the money runs out. The relationship felt personal to them, even if the project worker was only doing a project.
In conclusion, artists should refocus on art as a human need, rather than a dementia therapy to avoid a devaluation of the concept of “therapy”, and the objectification of people with dementia as the stuff of an art project should be as carefully considered as you would if you were trialling them on an unaffordable and unproven new medication. Distracting people with dementia to entertain them is worthy activity, but distracting policy makers with ornamental interventions is not without risk.
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