Co-production and engagement of people with dementia: The issue of ethics and creative or intellectual copyright

In December 2014, I came across one of my own poems on Twitter titled ‘Lost’ (2010, 2012) that appeared to be attributed to other authors, although I wish to state clearly in no way was it unethical in the research process or the way it was cited and in no way did this pilot study then published by Petrescu, MacFarlane, & Ranzijn (2014) breach any ethical protocols. The way the poem was published on Twitter was what caused me to notice it in the first place, which was as ‘“Lost” (Petrescu & McNab)’, rather than as the author [me] who owned the creative copyright. This Editorial is not considering the ethics of using people with dementia in research, as that is clear in the literature. It is important to note that this was not the case in the poetry pilot project, and the researchers treated all participants with the utmost respect and adhered to all ethical and other protocols. The way my poem appeared on Twitter, is what highlighted not that researchers are not following strict research ethic protocols, but rather, people who are engaging with people with dementia, outside of formal research may not be considering them.

Specifically, it will consider the creative and intellectual copyright or ownership of people with dementia in general, and whether this issue has been neglected, or even considered as a valid concern. Almost all others providing intelligence or creative to a piece of work receive full credit, and most often also are paid for their contribution. This is not happening to people with dementia, and all too often, we are still listed on documents as ‘People/person with dementia’, just as we are too often still listed that way on a conference or event program. It is not only offensive it is disabling and stigmatising to be nameless and undervalued, and it is my hope this article opens the door to a more morally and ethically considered approach to how people with dementia are being ‘engaged’ beyond formal research.

People with dementia are rarely funded to be the people standing on the podiums at conferences and events presenting the work, missing out on the full acknowledgement of their sometimes vast contributions given for free or almost no payment other than being funded to participate in working groups or on a committee; they miss out on the public acknowledgement, and whilst this type of engagement and the ensuing knowledge gained is hugely important and must be collected, this type of ‘use’ of creative and intellectual content is too often mostly being used by people without dementia for career or business advancement. Of course the value of the contributions is real, and private and sometimes public acknowledgement is given, but I have to ask, why are the people who are providing this content not usually the ones funded to present, or at least co-present it? A two or three minute video clip of people looking happy and contributing is not the same acknowledgment as presenting the work themselves or being paid for it and suggests tokenism and even exploitation. It also makes them appear as research subjects or participants and not as co contributors.

The other consideration where this work has been done in ‘collaboration with people with dementia’ is a question of whether their content has been manipulated to suit the needs of the organisation or the campaigns of the organisations who are inviting and supporting the consumer engagement, and if all people with dementia would have the ability to know if that was happening or not; after all, they [we] have reduced capacity. Geraldine Degabriele Pace (2015) deals with the complexities arising from participatory research, which I suggest could also be applied to ‘consumer engagement’. She says there are sticking points when involving people with disabilities (therefore dementia) in research which is ‘insurmountable at times, by virtue of being aporetic’, which is a useful consideration in this particular discussion. She says when engaging with this cohort, it is important we also deal with those particular difficulties whilst also keeping in mind the ethical considerations. To date, I’ve not seen this care taken in ‘consumer engagement’. In fact, are organisations being unintentionally coercive (Lejman, Westerbotn, Pöder, & Wadensten, 2013), and whilst their study was of people with more advanced dementia living in a nursing home, it is a consideration that appears to be under the radar in the engagement of consumers with dementia in the community.

As people with dementia are being ‘engaged’ more often by advocacy organisations and other businesses in the sector, as well as in research, creative copyright and the ownership of intellectual property appears to be an issue that I believe has been overlooked. We are considered a vulnerable group in research, and the ethical boundaries for including people with dementia in research are stringent (Cubit, 2010; Higgins, 2013; Holland & Kidd, 2015; Slaughter, Cole, Jennings, & Reimer, 2007) and often, it is difficult to get research proposals accepted if their care partners are not included, if at all.

People with dementia in Scotland who became members of the Scottish Dementia Working Group Research Sub-Group developed some guidelines, published in an article ‘Core principles for involving people with dementia in research: Innovative practice’ (Keyes, 2014), but whilst these guidelines are helpful when considering people with dementia in research, they do not address the issue of intellectual or creative copyright or ownership issues. A comment often made by people with dementia in the Dementia Alliance International ¹ online support groups is they are ‘treated by organisations as “special” and then dropped, once they no longer function as well, or sometimes if the continue to function too well’. This also appears morally questionable.

One of the key concerns in involving people with dementia (therefore people with cognitive impairments) in research is determining their capacity to give consent. Capacity is a legal term closely linked to the ability to make choices, understand information, and communicating that to others. A person’s capacity to provide informed consent is a reflection of their ability to understand the nature of the research, to appreciate the consequences of participation, and to make a reasoned choice (Cubit, 2010; Lai & Karlawish, 2007; Williams, 2007). It is evident these considerations are not being made by any advocacy organisation or private business when actively ‘engaging’ with people with dementia, apart from consent to use images or to participate in media, and I believe this is a serious oversight. Considering that the ethics approval processes (Murray, Pushor, & Renihan, 2012) does not appear to have been considered, and I would suggest, ethics have not been considered at all in the same way it is when engaging with people with dementia in research. The question is, should it be?

People with dementia are more recently demanding to be considered as people also living with varying and increasing disabilities, and there are also very stringent ethical considerations when using this cohort in research (Murray, Pushor, & Renihan, 2012; Sullivan, Derrett, Paul, Beaver, & Stace, 2014). Dealing with the issues of anonymity and informed consent are important in research, but they have not been addressed in ‘consumer engagement’ appropriately, if at all. When dealing with issues regarding representation and dissemination of the creative or intellectual content belonging to people/a person with dementia that is being disseminated publicly either by publications or at conferences, little or no ethical considerations appear to have been considered.

Furthermore, on a topic I have written about many times previously, we do indeed have ‘A thriving dementia industry’ (Swaffer, 2015), and it is very clear there is big money in dementia. You only have to see all the advertisements for new products, and the deception by companies such as Lumosity who were fined millions of dollars for falsely claiming their product prevented or slowed dementia. ² There are also huge career advancements for individuals presenting work at conferences and events, and I have often likened conferences to career launching pads. I have attended many, and so far have found very few things I listen to that actually make a real difference to the daily lived experience of real people living with a dementia and so often, it looks more like a social club with the same people in attendance.

This is not to say almost everyone working in the industry does not mean well or want positive change, quite the opposite as most people I have met whether for example, they are researchers, clinicians, or people working in an advocacy organisations are truly passionate about improving the lives of people with dementia. I suggest, however, the moral and ethical considerations of engaging consumers with dementia and co-production with them have been overlooked.

Following the diagnosis of a dementia, most people become so isolated that any sort of engagement seems preferable to the loneliness and isolation, and when approached to provide a ‘consumer voice’ or for ‘consumer engagement’ for organisations or to participate in research, they are usually keen not only to feel as if they are making a positive difference, becoming involved in almost anything is preferable and becomes an opportunity to live beyond dementia. Of course that is positive, but at what cost is this ‘engagement’ to them, and to more fully consider the issues I will take you back to why and when I started blogging and writing poetry. I’ve written before of feeling as if I have been treated as a non-human being following the diagnosis of dementia, and in my book wrote this (2016, pp. 190–191):

I believe there is a sense of what Martin Luther King described as ‘the degenerating sense of “nobodiness”’ (1963) amongst many disAbled people, especially those who are struggling with mental, terminal or chronic illness, old age and dementia … There is often a feeling of disconnection as we struggle with the notion of a level playing field, as well as the feeling of ‘otherness’ as we reach out for services that are labelled in ways that make us feel even more different to others, and therefore marginalise us.

In 2008, as an undergraduate student at the University of South Australia, I undertook a poetry class to complete my Bachelors of Arts in Professional and Creative Writing. Earlier that year, I had also been diagnosed with a younger onset dementia and found poetry to be an easy way to express myself as well as a therapeutic and healing form of expression about that experience. I signed up to be a research participant in a pilot project between my university and Alzheimer’s Australia South Australia with a small group of others also living with a dementia. The outcome of this small pilot study was a published book of poems, a published research article and an ongoing love of writing poetry including publishing my first volume of poetry in 2012. Both books included my poem titled ‘Lost’. Interestingly, writing poetry and other narrative makes me feel far less ‘lost’.

The poem was included in the article in a way that was easy for misrepresentation, and when discovered on twitter appearing as if it was not my poem, in the following almost 18 months it took to resolve the issue, it was concerning. However, I again wish to make very clear it had nothing to do with ethics of the pilot study or the authors of the article, but instead highlighted the possible challenges ahead. The poem was cited like this:

The themes of loss emerge bluntly in a poem such as Lost by ‘Kate’:

Lost my teddy

Lost my book

Lost my keys

 Lost my bird

Lost my love

Lost my way

Lost my mind

 Lost my soul

(Petrescu & McNab, 2010, p. 13.)

It seems obvious to us all now that it would have been preferable to reference it like this: (‘Kate’, in Petrescu & McNab), which would have ensured it would have appeared as my poem on social media as well. If I had wished to be anonymous in the published poetry book, then referenced as (‘Anonymous’, in Petrescu & McNab) would have also been better. I have been unable to find anything in the literature on this topic on the way forward, also why I agreed to write this editorial piece when invited to do so. In this day of a very high level of use of social media, including by people with dementia, it is imperative we question further and these issues are reviewed.

Organisations are increasingly involved in promoting and funding the co-production of services and publications. This transformation is not without its challenges, as it should be noted that we would be best served to negotiate shared ownership of the product or service. The intellectual property implications of this co-production through consumer engagement are therefore considerable, in particular about who owns the intellectual or creative property. In their article, ‘For those playing along at home: Four perspectives on shared intellectual property in television production’, Green and Erickson (2014) propose four definitions of intellectual property through which to examine the status of viewer creativity: legal/regulatory, entrepreneurial, accounting, and communitarian. The authors concluded that each definition on its own is insufficient to aid strategic planning, so a new model of programme-as-platform is proposed for TV companies working with interactive IP, and this could be applied to the use of people with dementia who are currently giving up most of their creative and intellectual content, for little reward other than feeling good about contributing positively. I ask, is that good enough?

A recent blog (2016) posted by Dave Nash called Don’t Give Your Work Away talked about his experience of being asked by the BBC if they would use one of his images. When he told them it was to cost the £75, the rate he has researched as a reasonable current rate for this type of product (yes, our photographs belong to us, and could be considered a product, even though we leave them on Facebook, who then have ownership of them), he was told the BBC did not have a budget for this type of thing. He said:

Those two words keep showing up these days, ‘No Budget’. Really no budget to pay people for their work! So a multi-million pound company like the BBC has no budget to pay people? I find that rather hard to believe, in fact I find it offensive that they have the nerve to ask people. They are not a charity, I would have some sympathy for them if they were, but they are there to make money.

However, I’d suggest even charities should be paying for at least some of the services their volunteers are providing; after all, the staff are all drawing salaries, some of them quite considerable and I would have thought it is not unreasonable to at least be paid for creative or intellectual content in the process of consumer engagement and co-production.

In conclusion, the issue of creative and intellectual content ownership and copyright is massive, and one that does not appear to have been raised previously in relation to people with dementia and their significant contributions through consumer engagement. They have also as they have become increasingly avid users of the online space, including social media and blogs, and the ownership of this content, or the use of it may be an issue we have not yet addressed as well. The key to continuing success may be a more honest brokerage to assure the use of intellectual and creative content is used in a more ethical way. Charities and private businesses dedicated to dementia can play a vital role: as well as fundraising and applying for grants, they can and perhaps should also take the lead on this, as they have predominantly been the organisations who have promoted consumer engagement and co-production. Employing people with dementia in their work would be an excellent place to start.

Seeing my poem ‘Lost’ on Twitter, without reference to me as the author opened up the proverbial Pandora’s Box and it is very important to remember, the editors never ever claimed authorship of my poem, anywhere, at any time. In no way was it used or cited unethically, but the way it appeared on social media did open up a vast list of questions about the engagement of consumers beyond research. The research community have to adhere to stringent ethics guidelines and constraints, so it seems clear to me that anyone else including organisations and charities who are actively engaging in co-production with people who have changed or reduced capacity including dementia, should be morally and ethically obligated to do so as well.