“We want autonomy for ourselves and safety for those we love. That remains the main problem and paradox for the frail. Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.” ~ Atul Gawande
While keeping people—especially those who are living with chronic conditions and physical challenges—safety is important, there can be benefits to risk also.
One expert cautions that there is such a thing as being too safe and that occasionally a little risk is a good thing. Dr. G. Allen Power, author of Dementia Beyond Drugs and Dementia Beyond Disease, recently hosted a webinar, “Negotiating Autonomy and Risk: A Relational Approach,” in which he explained the benefits of risk.
Three Pillars of Dementia Care
Dr. Power’s approach to dementia care rests on three “pillars” which he describes:
“The first pillar is redefining dementia, not simply as brain disease but in a more holistic sense. I define dementia as a shift in the way a person experiences the world around her or him.”
“The second pillar is to stop this trying to mitigate disease and instead work on a more proactive strength-based approach which is to try to enhance a person’s well-being regardless of their diagnosis or how much disability they may have. There’s always a way that we can improve people’s well-being to some extent.”
“The third part is the so-called culture change part…we have to transform the systems of care. The systems of care could be a nursing home, but they could also be how care is provided through home/community-based care.”
The Importance of Autonomy
“We don’t repress people because we’re mean, but because we are caring people. And sometimes in our caring we can be a little bit over-caring and we can actually oppress people without realizing that we are doing so.”
“If you have a failed sense of identity and connectedness, then your autonomy is going to be less. If there’s a good sense of security, it can help with autonomy but an over-reliance on safety can actually decrease autonomy; there’s a very fragile dynamic between these two. Autonomy is directly supporting meaning and growth. In order to do things that are truly meaningful, you have to continue to grow as a person. We need to have a sense of autonomy.”
According to Dr. Power, the ways that well-meaning people (both family members and professionals) can erode autonomy in those for whom they care include exclusion from discussions, exclusions from decisions, segregated living environments, maintaining low expectations, inconsistent staffing patterns, segregated living environments and more.
How Autonomy is Imperiled
Two common practices that erode autonomy: all-or-none thinking and surplus safety.
“All-or-none thinking is basically black-and-white; you can do this or you can’t do this; you can decide this or you can’t do that; you are capable or you’re not capable. We don’t have any in between, we just say you can or you can’t. And there’s a lot of that thinking that goes on with dementia care both with families and professionals in all care environments,” Dr. Power explains. “It comes from many things—those stigmas, those deficit-based views of dementia, our need for black-and-white solutions so that we don’t have the ability to get the grey areas to say, maybe you can do some of this, maybe there’s a way we can have some nuances in what you’re able to decide.”
This all-or-none approach can come from a misunderstanding of the role of a caregiver—either family or professional.
“We think our job is to take over,” he says. “We think our job is absolutely to keep the person 100% safe and not take on any risk and that’s a misunderstanding.”
No Such Thing as Zero Risk
“Surplus safety is too much concern with upside risk as opposed to downside risk,” Dr. Power explains. “There is never just an upside or a downside. Every decision we make, whether it’s you, me, or a person we care for with dementia, every decision has an upside and a downside.”
And when it comes to dementia, “nearly all of the focus is on downside risk.”
Rather than aim for no risk or take an all-or-none approach, Dr. Power recommends practice with different scenarios:
“So, there’s many different parameters you can put on the choice to make it safer than just all or nothing,” he says.
Next, “you’d like to make a decision in as collaborative a way with the person with dementia as possible trying to maximize both autonomy and minimize risk knowing that risk will never be zero.”
Further, you want to document and follow your results.
“Document because if things don’t go well you want to show that there was a thought process behind it, that you can back and examine,” he says. “And you want to monitor because if things don’t go perfectly, you may need to go back to the drawing board and say okay that didn’t go so well, what if we add this additional guideline, this additional aspect, maybe we can make it safer. And the other reason you monitor results is because people’s abilities change over time so the plan that works today may not work six months from now.”
When caring for another, consider their autonomy as well as their safety, and be prepared to make changes as their needs and abilities change over time.
“The truth is that failure-free activities are meaningless,” Dr. Power states. “None of us has ever had an experience of meaning or growth because we accomplished something that didn’t have a chance to fail. So we can’t have a zero risk environment.”
A person who is living with arthritis may need more help in the home with every day tasks. Whether you are someone who is helping out a loved one who is living with the symptoms of arthritis or a professional caregiver, there are some ways to make this much easier for both of you.
We’ve created a new video to say, ‘Thanks!’ to all of the moms out there on Mother’s Day. Watch our video and maybe even share with your mom today.
As the needs of a loved one develop and shift, a volunteer caregiver may find themselves missing time at work and feeling increasingly stressed. Learn more about paid leave for family caregivers in your state.