How do we navigate when
someone loses full decision-making capability? Hopefully, they have one or more
family members around who have their best interest in mind and can act as a
surrogate decision-maker. Unfortunately, many older individuals with cognitive
decline including Alzheimer’s Dementia (AD) are placed in nursing homes or
memory-care facilities and are only regularly seen by employees.
It is difficult to
expect staff to perceive a patient’s quality of life when they may not know how
that person would judge it for themselves. Making decisions regarding medical
treatment for AD along with other health conditions requires weighing the
benefits of prolonging life with little or no restoration of cognition. Would
an AD patient’s power of attorney be acting out of beneficence if they sought
every treatment that would prolong the life of the patient? Or is there a point
when quality of life is so low that resources are being wasted and the patient
would likely not want to live that way anyway? How do we still respect there
autonomy, and where does doing good become doing harm?
This is a personal topic
for me, as my maternal grandmother suffered from AD for the last few years of
her life. It took a big toll on my mom, aunt, and uncle who made decisions for
her and had to watch the person they knew fade away. My mom constantly worries
that she will develop Alzheimer’s because there are known genetic components of
the disease. She has considered being tested for susceptibility genes such
as APOE4, but I worry this would do more harm than good.
Genetic testing can be
difficult to understand, and there are many genetic and environmental
components that can contribute to someone developing AD. In the instance
of APOE4, a pleiotropic gene, it can alter the risk for many
neurologic conditions (Whitehouse, 2019). Separately, all humans carry types
of APOE genes that are involved in cholesterol metabolism
(Whitehouse, 2019). Rather than getting genetic testing, I feel that my mom
(and myself) should focus on modifiable risk factors for AD like diet and
exercise, along with management of risk factors for comorbidities such as
stroke, diabetes, high blood pressure, and depression (Edwards et al, 2019).
Go call your
grandparents, they miss you!
References:
Edwards Iii, G. A.,
Gamez, N., Escobedo, G., Jr, Calderon, O., & Moreno-Gonzalez, I. (2019).
Modifiable Risk Factors for Alzheimer's Disease. Frontiers in aging
neuroscience, 11, 146. https://doi.org/10.3389/fnagi.2019.00146
Whitehouse P. J. (2019). Ethical issues in early diagnosis and prevention of Alzheimer disease. Dialogues in clinical neuroscience, 21(1), 101–108. https://doi.org/10.31887/DCNS.2019.21.1/pwhitehouse
My grandmother was diagnosed with Alzheimer’s a few years ago and watching the slow decline that is caused by the disease is heart breaking. I was also wondering if my father and I should get tested, or if it would end up doing more harm than good. Is it better to know and be stressed about it or not know and be stressed about it? Maybe not knowing and convincing myself not to worry about it is the best option. I was wondering if there were any studies done on the psychological impacts of genetic testing and luckily, I found a paper in Nature (Wade et al., 2010). Unfortunately, my questions were not answered, this was a review of studies done on the psychological impacts of giving genetic test results to children and the authors concluded that there was insufficient information to understand the relationship. They said that “children who received genetic test results, whether indicative of increased risk or not, did not experience significant changes in psychosocial wellbeing” but indicated that it might be due to errors in the studies not lack of response. I am interested in looking further into this issue and discovering not only the impacts on children but adults as well. Can this be a source of chronic stress in adults?
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