Supported decision making for people living with dementia

I was invited to participate in the capacity of a person living with dementia in a research project which was investigating the concept of supported decision making in the context of dementia. I felt that this was a very worthwhile exercise, although I admit that at the time I was quite confident of my understanding of what supported decision making comprised, and that I was really rather forward thinking about it all.

I cast my mind back to my personal experiences of caring for older family members experiencing cognitive decline, and in general, the process went like this: It would become clear that residential care may be required to provide assurance that the family member was cared for around the clock. As a family, the decision was made, residential care homes were researched, visited, interviewed and a selection was made. The next step was to advise the person in question that they would be moving. This would be done in an extremely gentle and compassionate manner, with much cajoling and persuasive language. It was all about convincing the person to do what the family had determined was best for them while managing their expectations and keeping them from making a fuss or making noisy and uncomfortable objections. We all thought we were rather progressive in managing the transition for the family member, and if the process was handled quietly, gently and without fuss – and, particularly if the person in question could be convinced that it was their idea in the first place – everyone felt pretty good about it all. We had done our very best for our family member, and cared for them correctly and responsibly. Job done!

Fast forward to 2017 and I, at the age of 51, am seeing this all over again, but this time it’s ME! I am being spoken to in compassionate, gentle tones, but with increasing urgency to, ‘get my affairs in order’. I had a strange sense of familiarity coupled with vague discomfort. Intellectually, I knew that like everyone else on this planet, I had an expiration date. It was therefore sensible to prepare a will, power of attorney and advance care directive while I still could, but in my heart, something was wrong with this picture. I thought on this for a while until it occurred to me that what I was being asked to do was not the problem: It was the way I was being asked. I was being told what to do and when, and it was being sold to me as, ‘supported decision making’. Things started making sense; my expectations were being managed, my decision-making ability was doubted and my family were beautifully and generously going to relieve me of the burden of choice. This was a big shock to me. It struck home that a diagnosis of dementia – while in theory, carries a presumption of capacity to make decisions – however, in practice, the opposite is true.

Through the work of the Supported Decision Making in Dementia Care Project, I became aware that this was surprisingly widespread in the larger community. Indeed, the concept of supported decision making was actually being understood and practiced, as well-disguised and well-meaning substitute decision making. This is a terribly important distinction for someone living with dementia, or any person in the community that may be vulnerable: Supported decision making respects and values a person’s fundamental human right to self-determination, while substitute decision making removes it completely. From a personal perspective, I have found that making my own choices with the support of my family is time consuming, often frustrating for all parties concerned, but gets to the truth of my choice and is ultimately preferable all around. Substitute decision making, however well disguised, is exactly that, and may try to mimic an individual’s personal values but will never be the same.

Every human being on Earth has a right to self-determination, and this is enshrined in Article 1 of the International Covenant on Economic, Social and Cultural Rights, a multilateral treaty adopted by the United Nations General Assembly in 1966. Therefore, it is logical to state that every individual has the right (not the privilege) to make their own choices, big or small, in EVERY area of their life. Sometimes a person may need support to do this, and this support must be provided whether it be by family members, friends or medical or caring professionals. Again, this is not a privilege, it is a right.

Contrast this with what the common understanding of decision making is when a person has the label of dementia. We come back to the compassionate and gentle guidance to a predetermined decision made in our best interests. This is frankly rather insulting and offensive, and not only robs us of our dignity and self-respect, but it also eliminates any real motivation to stay engaged with the world around us. Why would we, if we are not even useful enough to make even the simplest choice about our lives and how we live?

Consequently, it is logical to me that if we have an inviolable right to self-determination – even with a diagnosis of dementia – withholding of choice constitutes a violation of human rights. Failure to offer choice and more importantly, to respect the choices indicated by a person with dementia is a subtle, passive but nonetheless cruel and painful variation of abuse. I would describe this as one of the cruelest types of abuse. Taking away a person’s choices, however well-intentioned and for whatever reason, silences you. It robs you of your identity and sense of self. When you can’t even contribute to your own existence, you can’t really expect any good outcomes. For me, it makes me feel like I’m the ‘walking dead’; physically here using resources, but irrelevant.

With that in mind, I cannot in good conscience say that failure to properly support a person with dementia to make their own decisions is an outright criminal act. As a society, in Australia, we are not at the point where the community truly understands what supporting persons with dementia in making decisions looks like, or the consequences of withholding such support. I am greatly inspired by the resources developed by the Supported Decision Making in Dementia Care Project, and the level of support it has received across community, Non-Governmental Organisations, for-profit and medical professions. In my experience, most people are so grateful for clarification on exactly how to do the very best for their loved ones, and the quality of life for a person with dementia when their choices and decisions are sought and respected again is profound.

Further to this, the practical side of life must eventually lead to the legal side of things – pertinently, the determination of capacity for a person living with dementia to make legal and financial decisions. For most people in the community, the understanding of the complexity of the laws and lack of laws around capacity almost always leads back to it being easier and more efficient to revert to substitute decision making. I would greatly hope on behalf of the 400,000 or so Australians living with dementia today, and the many millions of persons who will be living or caring for a person with dementia in the future, that someone is brave enough and visionary enough to set a robust framework to support persons with dementia to make their own choices and decisions and have those decisions respected in a legal sense, by providing a clear and consistent pathway for self-determination.

Finally, I would suggest from my own personal experience that the cost of providing support for decision making to a person with dementia will almost certainly be outweighed by the benefit. Not only the intangible quality of life benefits which are obvious, but in quantitative benefits. A person who remains engaged with their people and environment will have a rather different lifestyle and disease trajectory that a person who disengages in the earlier stages of the disease becomes depressed and will require a vastly increased amount of institutional care and medical attention. However, I am constantly amazed and heartened by the vast majority of people in the community who are dedicated and passionate about improving the lives of persons living with dementia. I firmly believe that as the true meaning of supported decision making filters through the various sectors of the community, and understanding grows, that this will have an extraordinary effect on the quality of life for not only persons living with dementia but their care partners and families who will at least be confident that they are acting in the very best interest of their loved ones.