I advocate for an old friend who lives nearby in Assisted Living. She's physically healthy but has s short-term memory loss. She was un-diagnosed when she entered AL, but suffers anxiety which can on rare occasion boil over to threatening behavior ("get out of my room or I'll hurt you" or pushing them away (which falls under the category of hitting), both offenses which they say they are obligated to record/report. In order to treat (medicate) the anxiety, the visiting PA diagnosed her with Dementia - without letting me or her Trustee know. We had just referred to the problem as "memory loss," so the diagnosis of Dementia was devastating and contributed to even higher anxiety. I was able to get a Limited Health Care Proxy, took her to an outside physician, confirmed the diagnosis (ie, Dementia = memory loss and changes in behavior), and agreed to help reinforce to her that a low-level anxiety med would help her feel better. She doesn't remember that she has "memory loss" but she seems to remember the word "Dementia" with vengeance. That was the start of the fee-based extra service of dispensing medication, which over 4 months increased her monthly charges by $1200 (dispensing of 2 meds, morning and evening and for dealing with her reluctance/refusal to accept the medication. Long story short, the poor behavior began to appear more often - resulting in the AL requiring that she be re-evaluated medically with the intent of increasing the dosage with the objective of finding a level that kept her (and their job) calm. Not having another solution, I went along with all they asked; took her for re-evaluation today with her PCP agreeing that increasing dosage was a trial and error process. When I returned her (and her meds which I had taken to the appointment), I noticed that both one-month supplies had more than 15 pills left - which led me to question why since they were being paid to dispense 2x daily with the combative upcharge. THEN...I was told that patients have the legal right to refuse medication (a good thing) and that their records show she had refused medication 10x in January. The problem is, without this knowledge before I took her for re-evaluation, I helped lead her PCP to the opinion that the current dosage wasn't effective; and, on that basis, he doubled the dosage. I know caring for those with memory loss is difficult and I try to work with the AL. I just feel betrayed by their failure to be reciprocal with information. They didn't let us know that she had been diagnosed, at the AL facility, by a visiting PA; and now they led me to believe the meds weren't working without letting me know that she was refusing to take them. I understand that the AL industry is regulated - and why - they can't tolerate someone who threatens staff or other residents' safety and they are required to abide by patient's rights laws (right to refuse meds, not be locked in their rooms, etc.). I'm building a healthy dislike for administrative procedure in institutional living, yet I have no alternatives to recommend to her Trustee. Soooo frustrating!
I agree with some comments made already about considering a move to a memory care unit. Often the staff there can come up with novel ways to get residents to comply, take medications, calm down. Staff in regular vanilla AL generally assist people physically and handle dispensing all medication for their own protection, not because the person has dementia.
If it were my decision, even if that facility had a MC unit, I would seriously consider going elsewhere (unfortunately some ALs require big $ up front and more or less lock you in. Hopefully that is not the case here.) The one we chose, we asked about their policy - we and they have a two month notice, so we would only have to find another place and give 2 months notice (would probably take longer than that to find something better available!) The good news is we like this place, so hopefully mom doesn't tick anyone off!!!
In particular, right to refuse or not, if someone has dementia, THE STAFF should be communicating with her advocates!!
We learned that what we needed to do was to request mom's med records at each care meeting, make specific requests when we were doing followups with docs and the like.
It sounds simple. It's not.
I would think that missed medication doses need to be reported to the facility’s medical director on a reasonable interval- I would ask what their policy is for missed medications and how to document this and state who is informed. As a nurse, I had to report missed doses due to patient refusal when I worked in a hospital but AL centers do not appear to be need a JACHO inspection, meaning rules are more lax as the clients are stable and chronic.
IMO there must be a policy in place to notify the providers of the patients that refused their medication doses.
I too would be awfully angry if I was asking a MD for a medication dose increase on the premise the person is taking the med daily and then find that,in fact, the person isn’t taking the medication as prescribed to begin with.
Good luck to you both and please take care of the HIPPA issue so you can continue to be their advocate.
But Sassy I’m somewhat concerned about the situation as it pertains to you.
Your her friend, correct? Your not family, not her DPOa or MPOA?
The Limited Health Care Proxy that was done, was it time limited just for the trip to MDs office so not valid anymore?
There’s a trust, trustee, involved in her life & finances, right?
If so, you really have no legal standing to her but if you were to personally sign any paperwork for her you could be held responsible. This is not a good position for you to be in. Just where is her family in all this?
Drugs have therapeutic uses. Antibiotics cure infections. Bp meds help prevent strokes. Antidepressants help some forms of depression. And sometimes, folks with severe agitation need powerful meds to keep them from harming themselves and others.
It does not sound as though this place has the right level of care for your friend, and is poorly run.
I'm going suggest you look for a better, specialized facility, and find a geriatric psychiatrist who can evaluate your friend's anxiety and agitation.