While I was at the Aging Life Care Association conference this past week I heard one of the speakers discuss “Capacity, meaning someone’s ability to make informed decisions that factor in their personal choices and their right to self-determination.” What she was saying was not exactly new information for me, but it framed it in a new lens if you will. As soon as someone receives a dementia diagnosis of some type, many people assume they no longer have Capacity. Point Blank: their diagnosis means they need assistance in making all decisions. However, the speaker at the conference said when people ask her if someone has capacity her reply is always, “Capacity to do what.” She was speaking straight to my core when she said that! She made it clear that Capacity is not, and cannot, be an all or nothing trait for anyone, even someone living with dementia.
When someone has dementia it does mean that they will lose capacity over time. It does not mean they lose ALL capacity all at once. Perhaps someone loses the capacity to remember what they ate for lunch yesterday, but that does not mean they do not have the capacity to choose what they eat for lunch every day moving forward. Just because someone loses the capacity to remember to pay their bills on time does not mean they’ve automatically lost the capacity to pay their bills themselves at all, it just means they need assistance in making sure they are paid on time and correctly. Further along in one’s dementia journey they may not have the capacity to choose the safest living environment for themselves, but they may still have the capacity to choose if they want the room to be warm or cold, making it our responsibility to ask them how they like the temperature to be and set the thermostat accordingly.
The reality is, that just as each person’s experience with dementia is different, so are their abilities and capacity to understand and make decisions and then act on those decisions. We must look at every scenario and situation separately, understanding that often one’s capacity to make an informed decision could even differ day to day depending on many factors. Dementia is unpredictable so we must refrain from stereotyping and making assumptions about those who live with the disease, especially when it comes to their capacity.