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Personhood & Consent

Personhood and consent – what does that actually mean in practice? The values base informs us that “persons living with dementia are entitled to be regarded and treated as persons regardless of their cognitive state. Being able or enabled to make choices is one of the core attributes of being a person and a demonstration of whether or not others respect us as persons” (Dewing, J, 2008, Process consent and research with older person living with dementia). We must now start moving beyond the stereotyping of people living with memory loss, and the discourse of decline that robs people living with dementia not only of dignity but also of autonomy, power, personhood and ultimately citizenship.

I know many people will challenge me on this debate – how is it possible to get consent from a person who does not communicate verbally? Just look in their eyes when you ask them a question! They cannot make decisions! Yes, they can! They do not know. Yes, they do!

The challenge with consent does not lie with the person apparently not being able to give it – it lies with our inability or unwillingness to ask or obtain it. Consent or assent can almost always be gained through a process of careful explanation and observation.

Do we ask for consent and bother to explain giving medication to a person living with dementia? Do we tell them every time what the medication is for and why it is important for them to take it? Do we negotiate consent before we undress them and take them for a bath or a shower? Do we obtain consent before taking them to a doctor or performing a medical procedure? Before we put food in their mouths? Before we take them out of bed and undress them? I know we don’t. Again, the argument of not having enough time or people on hand to do this will be thrown at me.

Inclusionary consent is a process, a way of communicating around every aspect of our interaction with a person living with dementia. Do you mind if I sit down with you? May I take you to the dining room? May I take you to the bathroom? May I take down your trousers and put you on the toilet? And what if they say no? Do we actually listen or carry on regardless, enter into arguments and write in our report how “dif cult” the patient was?

Imagine, if you can, for one moment that you are living with memory loss. You are woken up by a person you do not know or think you have never seen before. That person, without giving you time to centre yourself or without telling you who they are, starts taking you out of bed and wants to take off your clothes and wants to take off your pants, with no explanation. What will your reaction be?

Is it, not time that we have a very serious conversation about our attitudes and perceptions of people living with dementia? That we stand still for a moment, look at ourselves and deeply question what we consider to be our own humanity, how we wish to be treated, spoken to and regarded and then afford people living with dementia the same right? It is not about “allowing them” to choose – it is the most profound human right, the right to choose, to give consent or refuse it. Autonomy.

Dignity. Personhood.

“Surely it will be chaos!” – I have heard this often. No, it will not be chaos, it will simply not play out according to your plans. It will not be chaos, in fact, I can almost guarantee you that it will lead to less chaos, and less stress for the person living with dementia and their caregivers, and ultimately lead to better clinical outcomes and a reduction in medication. But, and this is a big BUT, it will only happen if you are prepared to relinquish your position of power. If you are willing to risk adjusting your routines, and letting go of your power base and control issues, you will nd a new way of Being with people living with dementia. The more you respect their autonomy and their abilities, rather than focusing on their perceived DISabilities, the more you will discover the consciousness that is intact, the sense of humour, the playful inner child and the scared adult that is desperate to assert even the slightest bit of autonomy. And you will enable the person, support them to be the best that they can be.

The more attention you will pay to their body language, facial expressions, hand gestures and eye movements, the more you will connect and communicate with the PERSON behind the disease, and reconnect with the sacredness of their Spirit.

Let go. Let them be your guide and your teacher. Stand back, centre yourself, and be authentically present. It is the right thing to do. It is what you would want for yourself if it was you living with dementia.

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