Chris Roberts lives in north Wales and was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, in his early fifties. Since the diagnosis, Chris and his wife Jayne have been actively involved in raising awareness of dementia and have inspired many other people to continue to live life to the full with dementia. Chris is an ambassador for research in the UK, Vice Chair of the European Working Group of People with Dementia (EWGPWD) and is a co-founder and member of the 3 Nations Dementia Working Group.

We talked to Chris and Jayne about their participation, together with the other members of the EWGPWD, in a consultation about the PARADIGM project on 27-28 June in Brussels.  

How do you feel about the idea of patient engagement in the process of developing medicines? Do you think this is relevant for people with dementia?

Chris:  Patient engagement and involvement is absolutely necessary, it can save money and time, give valuable insight and advice that you can only receive from someone living with the condition. I am living with my illness daily. I experience and feel things that can’t always be learnt by the professionals in my care or who sat around a committee table.  Also do not forget that some people with dementia may have been a doctor, a researcher or a professor before they got dementia. There is the misconception that after one gets a diagnosis of dementia you suddenly become stupid. We just need extra support, understanding and reasonable adjustments to be made, we need to be asked what we require to participate.

Jayne: If this is relevant to other disease areas, why wouldn’t it be relevant in the dementia area? Rather than asking is this relevant to you? Let’s look at why it would not be relevant for you, and that then goes on to other relevant criteria. The stage of dementia for example, may have an influence on that, but the diagnosis itself would not say whether or not that person is going to be able to take part. It is about supporting the person in any way that may be needed, making sure that the person feels confident about participating in these high-level medical discussions. And those on a more local level.

You participated recently in a consultation for the PARADIGM project as part of the EWGPWD. How did you feel about taking part in this consultation as an expert by experience?

Chris: This at first, seemed a bit daunting, but with the information and background that was given and discussed, it ended up being a very interesting day. I felt that everyone in the room learnt new things and enjoyed the experience of the day. It was great to have three representatives from PARADIGM in the meeting, Suzanne, Sharareh and Neil. They were very patient, down to earth, very open and they did not mind explaining things which is excellent. I would like to thank them on behalf of the group for being so generous and sharing their time, knowledge and experience with us.

Jayne: What I enjoyed the most of the consultation was the interaction, the cross learning. Personally, I loved the back and forth interaction. It was two way: they learnt from us and we learnt from them.  

What should the people from the PARADIGM project take into consideration in order to engage people with dementia and supporters/carers in the process of developing drugs?

Chris: There are several aspects to consider. For example before the engagement activity, the person should receive a summary of who the organisation is, what the subject is, an agenda as early as possible, an alphabetical list of acronyms and their meaning. The information should be in plain English, clear and accessible. It is really helpful if paper copies are available on the day. Also the organiser should be clear about what they expect from the person with dementia, they could give the person, for example, a few questions that may give him/her food for thought, a bit of structure. If there is anything specific that they want from the person with dementia, then be explicit before the person gets there, of course there may be also other questions or issues that may crop up during the meeting but at least to know what they think would be valuable to know or discuss from the perspective of the patient.  It is always nice to have feedback about how our contribution was used and also how we can make our contributions better in the future. We want to do our best for them but if they don’t tell us, we don’t know!

So my key message would be, if you want to do this engagement process, don’t just tick a box, get suitable candidates, spend a bit more of time. Involvement should never be a ticking the box thing. Also, it should be positive and beneficial for all involved: patients, supporters and the people organising the engagement activity.

Jayne: From the perspective of the person supporting the person with dementia, I think it is important to be clear what the expectations are. One of the difficulties I often have in the various places we go to, is that I am the supporter and I am not sure if I am there as supporter to support Chris or I am there to contribute in my own right. After the engagement activity, we like to know if what we did was what they wanted or there was more that they would have expected from us.

Was it there anything that you found particularly interesting about this project?

Chris: I found everything very interesting, a lot of what was discussed I never considered or knew about. It was good to take part, learn and share. I particularly liked that PARADIGM is working for making patient engagement possible for ALL patients. Respect, inclusion and diversity seemed to be quite important for this project. We, as people affected by dementia, do really appreciate the lengths that these organising agencies and companies go to in order to involve us, and we absolutely appreciate what they are trying to do on our behalf.