“I know how to participate in {dementia} research”

“I” statements are very powerful. I love the 26 “I” statements of Making it Real.
I am working in partnership with Think Local, Act Personal (TLAP) and the new electronic Whose Shoes?® – Making It Real is aligned to these statements.

The statements have been co-produced with ‘real people.’ They define “what people want to see and experience; and what they would expect to find if personalisation is working really well.”

But when you think about it, it is very difficult to come up with ‘I’ statements, even if you involve, as TLAP did,  LOTS of different people, because the whole purpose of personalisation and person-centred approaches is that people are individuals. What matters to one person is very different from what matters to another person. So ‘I’ statements have to be very generic to have universality. “I want to be treated with dignity and respect”. Yep, we can all sign up to that one.

Yesterday, I was on Twitter (well, there’s a surprise) and Helen Sanderson, whom I much admire, tweeted this photo of ‘I’ statements about dementia, from Alistair Burns, whom I also admire.

I scanned down the list and re-tweeted to my followers….

But Sarah Carr, whom I also admire (a lot of admiration going on here) was a bit more on the ball than me.

Sarah had struck a chord. I thought of the various “‘in my shoes’ guest blogs I have collected. The series has some wonderful expertise. ‘Experts by experience’, professionals..: in short, a wide mix of people with passion talking about ‘their bit’ of the jigsaw. Julie Christie is a dementia researcher; her blogpost has been particularly popular (you can click directly on the links in the tweets):

Similarly, my friend Larry Gardiner, who is away on a “Dementia Adventure” at the moment (Have a great time Larry!!) wrote powerfully last week about his feelings about being involved in ‘dementia research’. It was a different point but my point is that Larry, who is living with dementia AND one of the brightest guys I know, clearly DOES know what he thinks.

What I am thinking is that there is an AWFUL lot to think about behind this ‘simple’ I statement.

I invited people to comment further. I invite YOU to comment today.

My mind went back to my dear Mum-in-law, Betty. She was always a bit ‘unworldly’.
When she had dementia, she agreed to anything. She told me that she needed to pay the window cleaner – she thought the ‘usual rate’ (for her small terraced house) was £60…
She would have agreed to ANYTHING.

So what on earth does a statement like “I know how to participate in research” mean for the Bettys (Betties?) of this world?

I have not researched this set of dementia ‘I’ statements further. No doubt there is a bank of evidence, guidelines, processes and other ‘stuff’ behind the scenes. But the net result is that it is being presented as a simple “you-must-surely-agree-with-this” set of universal principles.

I looked more carefully at the list. There are nine points:

  • I was diagnosed in a timely way
  • I know what I can do to help myself and who else can help me
  • Those around me are well supported and in good health
  • I get the treatment and support, which are best for my dementia, and for my life
  • I feel included as part of society
  • I understand so I make good decisions and provide for future decision making
  • I am treated with dignity and respect
  • I am confident my end of life wishes will be respected. I can expect a good death
  • I know how to participate in research

The first eight statements are things I feel are basically easy to sign up to. Each one probably deserves a comment but I will desist (other than to say I am delighted to see ‘timely’ diagnosis, rather than ‘early’ diagnosis – but that is another story). It is the last statement that we are concentrating on.

These dementia ‘I’ statements are certainly highly ‘aspirational,’ given the day-to-day lived experience of so many people living with dementia and their carers, struggling with little or no support. Personally I like tangible things like the Scottish government recently announcing a named support worker for people / families living with dementia… but perhaps that is just me? 😉

Yes, these statements are hugely aspirational but high expectations are exactly what we need in dementia care.

But, the last statement? I hesitate to use the word ‘disingenuous’. I am sure that there are many things I don’t understand. But I do understand that Betty would have signed any consent form in the world! Especially if it was ‘explained’ to her by a researcher or a doctor (or pretty much anyone!) that she would have regarded as an authority figure. Another trait of that stoical, self-effacing war-time generation to which she belonged.

Should this last ‘I’ statement be tacked on at the end of the list?

Hmm. I would respectfully suggest:
8 apples and one pear in a box marked… ‘apples’.

The jury is out. What do you think?

Please post comments ON the blog. This topic is very important.

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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6 Responses to “I know how to participate in {dementia} research”

  1. Jo Moriarty says:

    I think this is a very important topic and there are some really important points already raised in the blog. I can’t help but think we need more flexibility in our approach to consent. I am beginning to notice that the voice of people in the later stages of dementia is beginning to be even more absent than it was about 10 years ago. This has real risks in terms of voice. For instance, Jill Manthorpe and I have been looking at day care. It is noticeable that decisions about day care are being made using the views of people who do not have dementia at all yet people with dementia are among the largest group of people using day care. Do we also need some tiered level of consent? For instance, taking part in a single group discussion about e.g. the quality of home care, demands a lot less from the person than taking part in a long term study looking at biomedical changes. We know that a lot of people who develop severe illness that do not affect their cognition really want to help in the development of new drugs etc, even when they know they will personally not benefit. Over the years, I have noticed that people take part in research for many complicated reasons. Are people with dementia any different? Probably not but we all focus so much on the topic that we are exploring, we don’t really find out enough about how people with dementia have experienced the research process. Finally, I generally try to help with other people’s research as a way of giving back what other people have done for me. I guess this is my advance consent form saying I probably would want to take part in research even if I lacked capacity to decide at the time!

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  2. stuart turner says:

    As I am sure a lot of us do, I work with the mental capacity act in my role as a best interest assessor. Establishing whether a person is able to make a decisin for themself with or without support is often challenging. What I am sure of though is that this act does not permit a decison on someone’s behalf to partake in research. We can assess a person’s capacity but once a lack of capacity has been established, a decision other than not to persist can be made. Now clearly people experience dementia at different stages in different ways and their ability to make decisions and consent vary equally. So an individual basis clearly needs to be taken. A suggestion…a research donor card! By way of an advance decision.

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  3. Anonymous says:

    Having made my observations above, I am sure however that some research could be argued to be made as a ‘best interest’ decision if it could be evidenced that the research would directly benefit the participant’s life and not just that of people diagnosed with and treated for dementia in the future. Whenever I complete an assessment I always think of it as a form of personal research…research that helps me improve my professional practice by continually learning from new individuals, their circumstances, and ever more creative ways in which we can help people to meet their needs. I am all in favour of research via communication, less so research via pharmaceuticals.

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  4. Anne@Barod says:

    The Mental Capacity Act has a section specifically about consent in research. It includes what to do when someone does and when someone doesn’t have capacity to consent to take part in a particular research project. It includes have to support someone towards capacity, and what must be true before you say they lack capacity to make a particular decision. I’m content that the Act, if fully used, is fit for purpose.

    What we lack (?probably) are researchers who know how to translate the Act into ways of thinking and practical actions when designing and carrying out research relating to dementia.

    (Barod works from the perspective of people with learning disabilities; we have similar issues around ethics and research. Our bottom line is that social research that excludes the perspective of people with greatest lives experience is unethical and poor quality social research)

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    • Anonymous says:

      I have clearly confused clinical research, which is not permitted using the MCA with ethical research. the following link has some excellent advice taken from the research ethics guide book, and fully covers all capacity issues:

      http://www.ethicsguidebook.ac.uk/Mental-Capacity-Act-118

      it is interesting and helpful that it stipulates that research must be justified by a recognised ethics committee, and that the research must apply to the condition that results in capacity issues, and not a secondary condition that may for example be of a solely physical rather than cognitive nature.

      I hope this helps now that I have uncrossed my wires!

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  5. Stuart Turner says:

    I think I have focused on clinical research (which is in no way permitted using the MCA if capacity cannot be established) rather than other forms of research. The following is a very useful guide to the mca and it’s application when considering capacity and consent to research:

    http://www.ethicsguidebook.ac.uk/Mental-Capacity-Act-118

    it clearly states that research has to pertain to the condition that effects capacity within the person, and also that consent needs to be validated by an independent ethics committee.

    interesting reading, now that I have uncrossed my wires.

    I have recently worked with a number of service user groups in researching user led assessment practice and have found it very difficult to engage meaningfully with service users and carers where organic mental health conditions affect capacity. The intention was to help develop a practical guide to social care assessment of need that ould be used by practitioners, but that is equally as accessible to service users (to help them understand and engage with the process much more confidently). The issue is the lack of volunteers that live with or have experience of dementia who wish to contribute. If the condition is advanced and has affected the person’s ability to make some decisions, carers are reluctant to contribute even in their own right without involving their loved ones directly.

    If anyone has experience of having worked on a similar project, and can offer advice on how to make this more successful I would be very grateful.

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