June is Alzheimer’s and Brain Health Awareness Month. Given that more people are living to much older ages due to improved chronic disease management, the amount of people living with dementia is set to triple in the next 30 years (Alzheimer’s Assn., 2018). As dementia progresses, a person’s
decisions declines. This is not the same as
, which is the exercise of basic rights under the law, managing one’s own affairs, providing for one’s basic needs, and making decisions
To make a healthcare-related decision, a person must be able to
(take in information),
process information taken in), and
(articulate conclusion/choice based on understanding and deliberating) (R. Johnson MD, 2018). There is a growing effort to have people approaching their senior years complete advance directives (AD) which include the possibility of dementia. Making Choices Michigan does have access to dementia AD treatment preference forms.
But what about people who have already begun traveling down the long dementia road? Is it too late for them to tell us what they would want as their brain disease progresses? For example, in later stages of dementia it is not uncommon to have difficulty swallowing, thus aspirating (inhaling) fluid and food into their lungs, leading to pneumonia. Would the person want antibiotics to treat the pneumonia, and/or a tube feeding in an attempt to avoid aspiration? Or, would the person choose to continue eating/drinking and take their chances on either improving without treatment or let the disease run its course and perhaps die from the pneumonia? Would the person want to go to the hospital for every serious course of illness, or instead stay in their own living environment, perhaps with hospice?
Recently one of my family members was in the mid stage of Alzheimer’s. Although she couldn’t remember what she ate for breakfast or lunch, so could (repeatedly) tell me the story of a relative who kept trying to force feed his mother, who was in the later stage of dementia. His mother would continuously fight the spoon in her mouth and spit out whatever food entered. She told her son, “I have to die from something!” For my family member, I simply switched the situation and asked, “If that would happen to you, do you want me to force feed you or just let you eat as you wish?” Her answer was plain and simple: “If I want it, I’ll eat it. If I don’t leave me alone.” That statement showed an
of the situation,
of the information, and a
of her choice for force feeding. We immediately added that to her advance directive treatment preferences section.
If you have questions about dementia, and/or advance care planning, we are here to help! You can also contact our local Alzheimer’s Association, Area on Aging of West Michigan, or Rethinking Dementia. Most importantly, if you don’t have an Advance Directive, decide while you still can! Make an appointment with us today.