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How to Support Autonomy in Dementia

I was a young mother with two small kids and dated minivan. My husband, a police officer, worked the night shift and slept most of the day. I would try to leave the house with the kids each morning and let him sleep in peace. That van was my second home.

When we were expecting baby #3, we realized we needed a newer van. I did my homework. I toured the mom circuit and asked all my friends for their thoughts and recommendations. I was really impressed with the Chrysler Town and Country. That was a sweet ride.

The feature that was most important to me wasn’t high tech or luxurious. I really saw the value in having individual seats in the second row, instead of the bench seat found in my current van. The bench seat made it difficult to access the third row, where my son would be sitting once the baby arrived. My two year old son had to climb over the bench to reach his seat, and I had to reach over two other car seats to reach him. Yes, two individual seats was more practical than the bench. This much I was sure about.

When the blessed day finally came to go van shopping, we dropped the kids at my in-laws house. My husband and I had the day to ourselves… grown up conversation and lunch in a real restaurant. And we’d come home with a new minivan that would accommodate our growing family. It was going to be a great day.

Just as we were leaving the house, my father-in-law followed us out the door and said he’d like to come along. An awkward silence ensued.

For the record, I love my father-in-law. Of course I didn’t mind. But the men in that family have strong opinions. I hadn’t yet had a chance to tell my husband about my research and my conclusions. I was relegated to the back seat. What I was afraid would happen was exactly what happened…

I was pushed out of the conversation.
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According to the Theory of Self Determination, there are three core needs that heavily influence a person’s overall sense of well-being:
1. Autonomy (independent/self-governing)
2. Competency (successful/capable)
3. Relatedness (connected to others)

Older adults tend to lose ground on these three fronts in later life, and at an expedited rate if they have dementia. Much of the tension that is felt while trying to assist or care for someone with dementia is due to a sense of loss of these core needs. Autonomy is reduced when we start making decisions for the person with dementia. Competency is lost by neurodegeneration and aging systems. Relatedness disappears as spouses die, children move away, and paid caregivers come and go. Supporting these three components is a great way to increase a sense of control and life satisfaction, and it isn’t that hard to do.

Autonomy
Supporting autonomy can be accomplished by minimizing pressure. An authoritative approach or heavy-handed decision making doesn’t sit well with anyone… I don’t want to take a shower because you tell me to. I want to take a shower when I want to take a shower, and for the reasons I think are important. Offering choice (at least a choice of two) will give the person some sense of autonomy, some influence over the decision. You might ask me if I want to shower now, or in an hour.  Sharing the same view on things can create a sense of autonomy too, because I know that you are trying to direct a process toward a shared goal. There is common ground in the way families do things, the traditions of a culture, or the shared belief system of a religious background. Use these commonalities to promote a sense of self-direction.

Competency
Supporting competency is the one component that can be outsourced to other resources, thereby conserving caregivers’ energies for other supportive roles. Improving mobility and strength, for example, is best outsourced to a physical therapist. Improving self care, home management, or mastery of a task is best relegated to an occupational therapist. A dementia health coach can provide direction and assistance with movement, nutrition, and behavior.  Feeling in control of one’s body and the environment is critical for a sense of well-being, especially in dementia where even a slow decline can feel like a free fall.

Relatedness
Supporting relatedness is what caregivers do best. By focusing on promoting a sense of belonging and love, a caregiver can really boost a sense of well-being for someone with dementia. Most caregivers don’t enjoy the dirty work- making the tough decisions, following fear-based impulses, reducing independence.  They just want to love and support, not bully and control.

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During the drive to the car dealership, my husband and father-in-law discussed minivans.  They talked about gas mileage, resale value, safety reports.  When we got to the dealership, they walked around together, shoulder to shoulder, kicking the tires and pointing at engines.  When I finally had the opportunity to speak up, I said to them both, “I really want two separate seats in the second row.”

My father-in-law said that Ford doesn’t make vans like that.

My husband shrugged his shoulders.

My mood plummeted.  I checked out.  I stopped trying to engage or insert my opinion.  I suddenly didn’t care if I got a new van.  I just wanted to go home.

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Had my husband used the Theory of Self-Determination to navigate the minivan buying process, a great deal of stress could have been reduced.  I was definitely not feeling any autonomy in the process.  I was not offered choices and was heavily pressured to value things that were not important to me.  My husband and father-in-law did not share my perspective as the primary van user and caregiver to our kids.  My sense of well-being was squashed that day.

I could have made a great deal of concessions that day regarding competency.  I easily defer mechanical and safety expertise to my husband, who is a former mechanic.  I do think my concerns about being able to access my child in the third row was legitimate, but if there was a safety concern to consider, I would have been all ears.  But to be shut down with, “Ford doesn’t make vans with second row captain’s chairs” did not feel supportive at all.  In fact, it felt like a lie.

The relatedness component should have been a slam dunk.  My husband knows my struggles.  He knows I am fair and reasonable.  He wants me to be happy and feel self-directed. But he wasn’t showing it that day, as the influence of his father overpowered his relatedness to me.

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In the end, it all worked out fine.  This silly, pouty anecdote is hardly an equal representation of the tougher issues found in dementia caregiving.  But the framework still applies, and can be used to make challenging issues more manageable.  Provide nuggets of autonomy, outsource competency support, and love and comfort the person with dementia… and enjoy a smoother ride.

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