“Whilst one voice is important, many voices often are more powerful.”
-by Keith Oliver
Keith Oliver presents at the Joseph Rowntree Conference: Dementia Without Walls -07/10/15.
Unusually for me, I want to dedicate these thoughts to someone I don’t know, may never meet, but I do know the two people closest to them. My piece is dedicated to Rosetta Lily Milton, who was recently born and I hope will grow up in a world different from today, where the only walls are brightly coloured, inspiring, and uplifting and where dementia is no longer feared.
Having a real impact
When deciding whether to support a piece of work, the four key questions I ask, and would suggest you consider asking are, firstly, are the date and location convenient? Will I be supported? What impact will the piece of work have on me and those closest to me, either positive or negative? And also, what impact will my involvement have on the success of the piece of work? This could be sitting in a meeting, delivering a talk; interviewing for staff appointments; or writing, reading and commenting on printed documents. Pleasingly we are also seeing initiatives led by people with dementia as well as us supporting professional projects.
The impact one has can be around inspiring, informing, supporting or challenging, certainly professionals, and also, on occasion, other people affected by dementia. Ideally, it should result in change. Change in professional practices, or change in peoples’ perceptions around what living with dementia can be like. The opposite of this is tokenism, and there have been occasions, especially at first with my involvement, where I detected this, where professionals were seeking a service user perspective merely to tick a box.
Going beyond telling a person’s story
Whilst personal stories are really useful, and make significant impressions, if a service user can go beyond that and target the audience in seeking to inspire change, then so much the better. The phrase “expert by experience”, when connected to living well with dementia, and person-centred care, can, with support, produce presentations which are harder hitting and consequently move people to change.
Giving opinions as well as experience
Living the experience of dementia will encourage one to have opinions, which at times will be negative as well as positive – and there is nothing wrong in this. There is a time, place and audience for each. There are times when a subtle approach is required, and others require a more hard hitting opinion. Get it right, and a more positive change is likely to occur. Get it wrong, and you’re likely to alienate the professionals you are trying to reach. Dementia tends to make one more ego-centric, and if we can combat that by utilising the experience of others as well in what we say, then so much the better.
Using life skills
Each person affected by dementia comes with a series of life skills. It is the partnership between service user and professional that utilises these skills, builds upon them rather than being seen as in decline, and thus gives the person a better sense of self-worth
Being part of a group
Whilst one voice is important, many voices often are more powerful. There is no ‘I’ in team. A collection of opinions and experiences gives a broader and richer perspective, and avoids professionals and audiences thinking, “Oh, it’s him/her again. We’ve heard this before.” Being on one’s own is a lonely experience, and sharing the load with others is far more empowering. Debate and discussion within a group allows folk to contribute ideas and to agree, or to accept disagreement in order to bring about positive change.
Being supported
Being supported is important before, during and after a project, and needs to be done through the preferred method of the service user (i.e. telephone, e-mail, face-to-face, letter/printed matter). Respect and professional boundaries are important, and need to work for both parties, as often, the service user may in fact be supporting the professional as well. Knowing what the project entails, e.g. who the audience is, and what the purpose of the meeting is, will help considerably in ensuring that what one prepares is relevant and useful. Vagueness from professionals doesn’t work. It’s best if professionals give people with dementia a framework, with which they can be more creative and personal.
Getting feedback
Getting feedback is crucial, and sometimes, alas, in a busy world, overlooked by professionals. A little bit of praise and/or constructive criticism is almost always appreciated. It can be done quietly and effectively. Also to know that your contribution has made a difference from the professionals’ perspective is important, and where the piece of work went after your involvement is also important.
Difficult topics
Occasionally, I am asked difficult questions about sensitive issues, such as palliative care. My response depends on the questioner and the audience. If I feel being open, honest and frank will help them in their work, then I answer accordingly. If I feel they are being nosy or intrusive, then I don’t. My advice to you would be to do the same.
I hope that introduction is useful, and that what’s been said alongside the excellent Dementia Without Walls document, can prompt helpful discussion based on how we will involve people with dementia in the future. Back to you Nada.
