I am a Lab Rat.
Over the last three years or so since my diagnosis of Young Onset Dementia (Alzheimer’s disease) I have been prodded, probed, and interrogated by some of the best academics and research scientists.
I have bared my soul (and everything else) and jumped through hoops at the request of people who want to gather information and test theories on many different dementia-related topics.
I have spent hours completing questionnaires. and even more time online completing cognitive tests and other weird and wonderful concoctions disguised as games or puzzles. I have stoically endured full physical examinations and answered intimate personal questions.
And all because I want to help to add to the sum of knowledge around dementia and other co-morbidities.
I have given of my time.
I have given effort that has sometimes left me exhausted or emotionally drained.
I have made journeys, often at my own expense and sometimes on fool’s errands.
But I still do it, and I will continue to offer myself as a lab rat or Guinea Pig for as long as I am able.
I simply feel that it is my duty. And, if I’m honest, it also gives me a buzz to know that I am playing a small role in the advancement of science and that my participation may one day benefit others.
But enough about me. What about the practicalities? Finding the right candidates can be a problem. Dementia is a portmanteau word that embraces a vast collection of disparate diseases.
Even you experts cannot seem to agree on a common definition of the word dementia.
Five minutes of “Googling” will show you articles that talk of “The Four Types of Dementia” and others about “The Ten Types of Dementia”.
Other articles talk of 9, 12 or more. I guess it all depends on whether alcohol related brain damage, Parkinson’s disease and a whole raft of maladies where brain damage may relate to memory loss fit under the umberella.
I’m convinced that they do, but I’m sure you’ll correct me if I’m wrong and will understand why many people like me, are a little confused when they first start to educate themselves on the subject.
So, you want to recruit people who match the criteria as closely as possible? – good luck with that. Until there is a national register of people living with dementia, you will have to rely on referrals from professionals, websites like Dementia Research UK or Join Dementia Research, the good offices of other dementia charities and local groups and organisations to advertise opportunities for participation.
All of this may limit the pool of potential candidates.
Next, you will need to screen your candidates for suitability.
Do they have the right type of dementia?
Are they at the right stage of their journey into dementia?
Are they the right age?
Do they live in the right area?
Do they have any co-morbidities or take any medications that might interfere with results?
Are they tech-savvy enough to complete any online elements or attend online interview or therapy sessions?
Do they have a “Study Partner”? – I don’t. My wife works full time and has little time to handhold me. I don’t need much of that at the current stage of my journey.
And I’m sure there are a host of other things that an outsider like me is not even aware of.
Well. That’s narrowed things down considerably!
What I’m trying to illustrate is that is that your pool of eligible candidates may be as big as you would like, and that there is a good chance that some of your candidates may already have been involved in multiple research projects. Indeed, I myself am often signed up to two or three projects at one time, and surely there’s a danger here that my input may be tainted by exposure to repeated cognitive testing and “questionnaire fatigue”.
So, one of the major keys to the success of your endeavour is to look after the people you have selected as participants.
Now, let’s look at a few of the things you can do to keep your lab rats on board…
Explain the broad aims of your research and the necessary requirements for volunteers clearly and without jargon. – People won’t be so likely to volunteer if they don’t understand your general objectives or are unsure if they meet the selection requirements. I once travelled a long distance and waited a long time for a medical examination, only to be told at the last minute that I did not meet the age requirements.
Make sure all your forms, questionnaires and surveys are dementia friendly - Lots of white space, clear instructions for completion (what is the date format? for example), not too long and complex and not too many fancy-coloured bits and bobs in the page design that can distract.
Contact the participants and introduce yourselves in a collegiate and friendly way – not like a clinician or academic – Remember, it is US who are doing YOU a favour, and treating us like team members is good for our self-esteem and morale and will pay dividends throughout the research.
If you are asking anyone to make visits to a lab or test centre, make sure that are renumerated – also, think about providing refreshments and a quiet area, comprehensive location information and an environment that is dementia friendly (no shiny white glass-like floors, or big black mats that can look like holes in the ground to some of us). After all, we are the ingredients in your research recipe, you need to keep us fresh, healthy and happy!
Keep regular contact and provide updates – It’s only polite, and it makes us feel a part of the team.
Offer to list the person as a collaborator - On any papers that may be published as a result of the research. Why not? You don’t have to be an academic to understand how Maslow’s Hierarchy of Needs works! People want their contributions recognised.
Once the research is complete – A final thank you letter is much appreciated and, if it is appropriate and possible a brief summary of what was learned or links to any scholarly papers or articles that have been published as a result. If the research was a clinical trial, make sure that anyone on the placebo is offered the opportunity to obtain treatment with any approved medication that may eventually result from the trial if still medically appropriate.
Remember:
Lab Rats want to be:
Appreciated
Updated
Recognised
Renumerated
In conclusion:
I hope I haven’t bored you.
I hope that I’m largely preaching to the converted here, but I know that if the things I have mentioned are incorporated into your project planning it will increase the chances of your success and reduce instances of people “dropping out”.
I’m no expert in your arcane academic and medical skills, but AM an expert in Pete Middleton and his experience as a lab rat.
And it's not just me that has these opinions, they are also held by many of my friends who are living with dementia, a large percentage of whom would like to participate more, but are frustrated by the lack of opportunity and the clumsily constructed interfaces of some of the research "dating" sites that aim to match likely candidates to projects. If you are a researcher, I hope I have given you some food for thought. If you are a person living with dementia - Get involved! You can play a part in eventually banishing dementia and making it a thing of history like yellow fever, polio and rickets. What could be a more noble legacy?