Alzheimer’s and autonomy

v8ness8

Hello. I’m new here and I have a father diagnosed with late onset Alzheimer’s. I take him to all of his various appointments but I don’t quite understand why the providers rely on him for answers on his health. Sure I can provide some of the information but questions about his own depression levels or nausea only he can answer. The most challenging thing so far was optical appt. Not surprisingly he wasn’t happy with his prescription once he received his glasses. Is there a point that this changes? And when it does, do the doctors just control his meds however they want? For context, his meds are for other health issues diabetes, hypertension, anxiety. It’s been a very frustrating process to navigate.

H1235

Welcome. Im glad you found our group. Im not quite sure I understand. Do you feel the doctors are relying too much on your dad or not enough? The usual complaint here is that the doctor doesn’t consider that their patient has dementia and just assumes their answers are accurate. A person with dementia is not usually able to reliably report on their health in many cases. My mom will sometimes start talking with the doctor about symptoms she had 5 years ago, but fail to mention she no longer has these symptoms. It can get very confusing for the doctor. With dementia her memory is also not great. When asked how many times she had fallen in the last month her number was way off. Since I am familiar with the situation I usually add some context or correct her. People with dementia can also suffer from anosognosia. This is an inability to recognize their symptoms or limitations. For my mom this is mainly dementia related symptoms. She thinks she doesn’t need her cane, believes she could use her sewing machine if I would just bring it to her, does not understand why she needs to be in a facility and thinks she is perfectly capable of making decisions for herself (she has extremely poor judgment). Even when it comes to depression, I sometimes have to point out that I have noticed her being more down lately, since mom will just say she is fine. My mom hates when I help answer questions or ask the doctor questions. Anger is another symptom mom doesn’t understand or acknowledge. I have used the patient portal to relay this to the doctor since a conversation about it in front of mom would not go well. Some people sit slightly behind their loved one in the office and shake their head to confirm or deny their loved one’s answers. Mom had a sleep apnea appointment where the doctor spent 10 minutes explaining the advanced setting on her cpap machine. I feel lucky she still knows how to push the button to turn it on. On the other hand when she sees the eye doctor there is really not much I can do. When they ask repeatedly is this better or that, over and over, it might have gotten confusing for him. I find they whip through these pretty quick.

Anosognosia and Dementia - AgingCare.com.pdf

Bowerbird

Whenever my DH has an appointment, I write to his physician via the medical portal a day or two before, to either notify or remind them that my LO has dementia and may not be able to accurately answer questions. That way, it is not discussed at the appointment and the doctor will always look at both of us for answers, with my LO none the wiser. It is better to do this on your father's portal log-in, rather than your own, so if you can, be sure to elect for your own access to his, so that the message comes from him (in a manner of speaking,) rather than you. I just introduce myself in the beginning of the message.

Maru

https://alzconnected.org/discussion/76456/alzheimer-s-and-autonomy

I get with our Primary, who, apparently still believes DH to be in the MCI stage. DH, who is a bit of a hypochondriac, gives her a list of every ache and pain that he has experienced and she whips out a prescription of Rexulti…which I do not have filled. She is an excellent doctor in every other way. Thank you, BowerBird for your suggestion. Before we go next time I will definitely sent a message to dr.

harshedbuzz

@v8ness8

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Two things play into appointments— one is the stage in which the PWD is and the other is the level of understanding the medical provider has about the implications of the disease beyond "memory issues".

In the earlier stages, a PWD can probably accurately report many symptoms assuming they tend to be a so-called "accurate reporter". Once anosognosia kicks in (see above) they may be unable to perceive changes in mood and function, and you'll have to step in. Stages chart—

DBAT (1).pdf

When dealing with my dad's appointments, I often communicated symptoms, behaviors and concerns via the patient portal a couple days in advance. Once I even sent a video of dad melting down when I was seeking an increase in his antipsychotic dose. This meant I didn't have to throw dad under the bus at the appointment and the doc got to see what we were seeing.

At appointments where the doctor did engage dad in reporting, I sat behind him in the doctor's sightline to non-verbally communicate the veracity of what dad was saying. Once I wasn't able to make an appointment (mom took him alone) and the doctor asked where I was. An observant daughter (or son, spouse) is valuable part of the medical team.

Most prescribing is based on symptoms. In terms of pain or anxiety, behavior is communication. In med especially, depression/anxiety can look like irritability. This is especially true in a PWD who has lost their social filter.

Vision issues are tricky and you might not be able to get a handle on this. Dementia causes issues in visual processing. This isn't a problem with the eyes or the lenses but with the diseased brain interpreting what the eyes are sending it. To a degree, this isn't "fixable".

Good luck.
HB

dcare45

I let my DW answer if she can. If I have to correct an answer I never say she I say WE have this issue. Seems to take that better than a straight out correction.
Also go over meds every time. Thankfully we take very few.

kath1054

https://alzconnected.org/discussion/76456/alzheimer-s-and-autonomy

Hi. I’m so sorry this is happening! Yes, if you have His health POA, you can and I do, have control of what meds are acceptable. I believe some are so powerful, they can add cognition issues. Early on, I took my DH to 5 neurologists, selected 2. 1 as his primary neurologist, to keep track of the progression, get to know him, follow him through the years and prescribe meds. He knew I wanted the lightest med and that I would research a med first before saying no/yes. The 2nd neurologist was educated at the Mayo Clinic and she agreed to order tests that I wanted without delay. (Petscan, lumbar puncture). But, then she was not great at answering questions, too hurried. I believe every Dr has their own unique experiences, having 2 allowed me to have 2 opinions. The testing info was valuable to figure out type of dementia, to help me understand which path he may be on. And yes, I do have to signal to doctors during the appt, if DH answers aren’t accurate. Same as other loved ones, I say “we….”. It is much softer than saying “He”. I love that you’re reaching out to learn. Every bit of information you absorb will help him through this! 😇

JPJardinel

Thank you for sharing this, it's such a common and valid frustration. Providers are required to get information directly from the patient as long as he's deemed to have capacity, even when it would be easier for you to answer. Alzheimer's affects different abilities at different rates, so your dad may still describe his own nausea or mood accurately even while struggling in other areas. The shift you're asking about usually isn't one dramatic moment, it happens gradually after a doctor formally assesses that he can no longer make informed decisions. At that point, whoever holds medical power of attorney steps in alongside the care team, not in place of it. It may help to ask his primary doctor directly what would trigger a capacity concern for them. It's also worth confirming a healthcare proxy or POA is already in place so you're not scrambling later. You're clearly doing right by him just by showing up and paying this much attention.

I hope these reference can help:
https://hopebridge.care/alzheimers-and-patient-autonomy-where-caregivers-fit-in/
https://en.wikipedia.org/wiki/Person-centered_care
https://www.alzheimers.org.uk/get-support/living-with-dementia/living-alone