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Ethics - A Barrier to Effective Dementia Research?


Like many people who live with dementia I feel it is my duty to make myself available to as many research projects as I can, and I regularly volunteer. I am happy - even eager to participate in any projects that might add to the sum of knowledge about the complex and still opaque world of dementia. I have freely and gladly given much time and energy to many researchers and have learned much that has helped me to understand more about my condition along the way - It's a symbiotic relationship.


But every now and then, I encounter a roadblock that prevents me from participating in a project. RESEARH ETHICS!


Research ethics involves the application of fundamental ethical principles to research activities which include the design and implementation of research, respect towards society and others, the use of resources and research outputs, scientific misconduct and the regulation of research. I totally get it. Ethical considerations MUST be at the heart of all research. But what if the requirements are ill-considered, unduly restrictive and even borderline insulting to participants? Here's a typical first conversation between a researcher and a candidate...


Researcher: "Hi. Thank you for agreeing to help me with my research. I'd like to set up an interview with you here on campus next week."


Candidate: "Sounds great. I'm eager to help."


Researcher: "OK. I'll send you a map of the campus and some consent forms for you and your carer to sign."


Candidate: "Why does a carer need to give permission?"


Researcher: "Ethics. We are not allowed to speak to you without the written permission of a carer, who must be present at all times during any contact."


Candidate: "But I don't HAVE a carer."


Researcher: "Sorry, but my hands are tied.


No carer - no participation." And that, is the end of what might have been a fruitful and rewarding relationship.


The misconception at the heart of this muddle is that people living with dementia are all incapable of making reasoned independent decisions simply because of our diagnosis.


Anyone who actually knows anything about dementia also knows that this is TOTALLY WRONG.


Like many people living with dementia, I still have the ability to drive a motor vehicle and retain a license to do so.


I can vote at local and general elections. I am still quite independent at the stage of the journey I am on. And though I refer to my wife as my "carer" that's pretty much a nod to the future rather than a statement of how things are today (Pam would call herself my P.A. 😊).


Why then am I deemed to be incapable of being interviewed without a "minder"?


Furthermore, many people living with dementia simply do not have anyone that they call a "carer" - life isn't that simple.


Appeal and review of ethical decisions seems to be an onerous and slow process in many institutions, and I am honestly aghast at the naivety and lack of expert knowledge or even common sense that has led to some of the restrictions I have encountered.


Perhaps fear of litigation sometimes blinds people's common sense.


Just let me sign a disclaimer and get on with the process! I have mental capacity, and frankly I'm offended that you assume, in your ignorance that I do not.

Conclusion

This is yet another "elephant in the room" of academia that people seem unwilling to address. Ethics must NOT be challenged. Even if they're based on incorrect assumptions?


Even if they hamper research? It's time that Ethics committees stopped being lazy and remote and actually started working more closely with both researchers AND participants in a spirit of co-production to develop safe but SENSIBLE ethical guidelines.


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