How to screen doctors for aged relative who is a "difficult" patient

January 19, 2016 3:38 PM

My experience so far has been that with the exception of the neurologist doctors have been unable to not take personally the patient's prickly+ personality despite having been informed of alz diagnosis. This extends to staff such as lab techs etc. What to do? Why is this the case?

I will fess up that this is .5 need to rant as I am left feeling like a medical education must somehow leave doctors unable to recognize dementia or at least unable to handle some of its more challenging interpersonal aspects. The patient is a bit narcissistic and the brain disease has aggravated that. A doctors visit can go sour if the doctor asks an innocuous question that gives offense, (ie "where did you live in NY?",) It is both hard and easy to know what will irritate the patient but what ensues is, while not exactly a fight for dominance, a sort of power struggle for manners, (if that makes any sense.) It is sort of like Curb Your Enthusiasm only unfunny and miserable.

The doctors that disappoint try to use rationality and when that doesn't work they don't seem to be able to resist non verbally communicating how crazy they think the patient is behaving. It is as if upon not receiving respect they don't know what to do. One rheumatologist was trying her best but was unable to not correct the patient on trivial irrelevancies, thereby stoking a stupid argument. I can sympathize with the doctors, after all I have much more experience with the patient I know how it feels, but I don't understand why it seems more important to them that they don't "lose" than it is to care for the patient and the poor bastard that is sitting next to them ,(me.) The only thing I can think is that they just don't have much experience with patients with brain problems, which seems peculiar. I have had some success with using lines like, "I need your help, this can't be the only patient you have seen who has issues with dementia." The thing is I resent having to manage the doctors "face" in addition to having to manage the patients kookiness. I am angry that while I feel that I have to operate as a buffer between the patient and the rest of the world most of the time , I seem to be required to do the same with the people and organizations that are supposed to be professional.

What I would like to know is A.)is this is just plain old common and have others experienced this, and B.) how to prescreen/inoculate doctors who seem pretty much uncontactable as a rule. Is this a case that requires concierge medicine? (I hate that idea, I believe it is a pox.)

Further I had a little bit of a hypothesis that this particular sociology of medicine problem might be more prevalent in Portland OR than it is in the East as I have noticed that professionals here more often than not seem to take disagreement over professional issues personally, I don't mean thin skinned I mean a certain tendency towards defensiveness about issues that are not personal. Sort of the way I hate negotiating price as I take it personally even though I know its not personal.

posted by Pembquist to Health & Fitness (6 answers total)

The doctors you need to look for are geriatricians and/or specialize in geriatric care. If you start with one as a GP, they should be able to refer you to specialists (such as a rheumatologist) that will be familiar with patients like your relative.

Someone I know is in a very similar situation, and is working on arranging concierge service. I think that given mobility concerns, along with hostility that tends to rise up when asked to do something they don't want to necessarily do, it's the way to go (at least in this person's situation).

One thing you may want to consider is a consultation with what's called a Geriatric Consultant or Care Manager. They are a wealth of information and are able to evaluate your relative's entire situation with regard to home safety, coordinate doctor visits, physical therapy, etc. One was consulted in the situation I am familiar with and has been truly invaluable in terms of resources (I didn't even know this field existed until she came into the picture).

Best of luck to you and your family.
posted by dancinglamb at 4:08 PM on January 19, 2016 [5 favorites]

My father is a neurologist and yeah, he is used to being extra nice to kooky old people with dementia. A lot of other specialties aren't trained in this.

Since the neurologist seems to get it, ask him for referrals to doctors with "strong bedside manner." Explain the issues you've been having. Doctoring (from what I have observed) is a small world. The neuro will know which doctors are jerks and which have a softer touch.
posted by BusyBusyBusy at 5:12 PM on January 19, 2016 [4 favorites]

Yes, you want a geriatrician. This is exactly what they do (and here is a chance to share my current favourite tumblr with mefites).
posted by tinkletown at 6:08 PM on January 19, 2016 [7 favorites]

My mother-in-law is like this to some extent - not dementia, but at times a profoundly difficult patient who is non-compliant to her care plan. We have a good set of care providers now, but it took some work to find them.

Contact the local Alzheimer's Association and ask for referrals to care providers. While you're talking to them ask about care givers support groups/services. Even if you don't think you need the support, it can be a source of ideas of how others are coping in your area.
posted by 26.2 at 11:01 PM on January 19, 2016

I think that because of your vast experience with the patient, you are assuming that these skills are easy. They are not easy for most people, and most people (including most doctors) never get specific training or sufficient training to develop those skills themselves.

I'm a specialist speech and language therapist working primarily with people with dementia. I provide training for staff in our hospital on communication with people with dementia, but sadly nobody will give me any time with our doctors because it isn't seen as a priority.

Also, people with dementia are all different. Some people need very strong direction and reassurance, some need to be the ones in control. Despite working with this population for quite a few years, I still get it wrong. I had one lady who I upset somehow and every time I came near her after that she shrieked "get away from me you horrible ugly old man" (I am female).

A geriatrician is much more likely to have the experience you need to interact with the patient, but they may not have the medical expertise to treat the specific conditions.
posted by kadia_a at 11:18 PM on January 19, 2016 [2 favorites]

I also agree that geriatric-specific doctors and institutions offer better care for elders. My uncle currently lives in a place that specializes in care for dementia and Alzheimer's patients and the folks there really seem to have the patience thing down. Plus, they know how to interact with people who's memories are going or gone.

And I'm not sure if this is a helpful solution, because I really think that people in the medical profession and others who have to help the public should do their damnedest to respond with compassion to all people, but we all know that that's not how most people actually respond for whatever reasons, good or bad. Anyway, that said, I work in a library and I've had the person who was the care giver/companion discretely hand me a business sized card that said something to the effect of 'Please be patient. The person I am with has dementia/Alzheimer's/a brain injury/memory loss.' There were along the lines of these Please Be Patient Cards. These may not be that helpful with a medical professional who already knows this, but maybe the reminder would be useful?
posted by carrioncomfort at 11:22 AM on January 20, 2016 [2 favorites]