Communication Between LTC Doctors and Caregivers

As a former Alzheimer disease (AD) spouse caregiver, I had interactions with doctors caring for my late wife in the dementia units of 2 different long-term care (LTC) settings: an assisted living facility (ALF) and a nursing home (NH). My wife received excellent care in both facilities.  However, her care would have been even better had doctors utilized my experience as her caregiver more often. The below situations are illustrative of this.

Prior to her LTC placement, my wife was seen regularly by a neurologist to oversee medication for anxiety. After placement in her ALF, I expected the ALF doctor to take over that responsibility. However, I had to continue taking her to a neurologist because the LTC doctors were not very familiar with anxiety disorder medications. The 2 doctors who came to my wife’s ALF once a week were both internists. ALFs with separate, sizable lockdown units for dementia residents (my wife’s unit had 32 dementia residents) should have a geriatric psychiatrist or neurologist onsite at least once a month—or at least available to the ALF nurse, social worker, and ALF doctor on a regular ongoing basis. 

While I was traveling for a few days, Clare woke up at the ALF and was unable to walk. My daughter brought her to the hospital in a wheelchair. Upon entry to the hospital, Clare had been taking quetiapine, alprazolam, sertraline, lorazepam, haloperidol, venlafaxine, and divalproex sodium all to help control her anxiety. In my absence, my daughter insisted that the doctors stop all that medication as they tried to determine the cause of her sudden inability to walk. I immediately drove home. By the 2^nd day at the hospital, Clare was able to walk again, first with a walker and then just with me holding her hand. The doctor said he couldn’t explain why she stopped walking suddenly, but because her anxiety level was still very high, he was going to place her back on all her anti-anxiety meds by the end of that week.  But Clare was discharged to the NH before the end of the week for continued rehab, and the NH doctor refused to place her back on her anti-anxiety meds.

The NH doctor available for dementia patients in my wife’s NH was also an internist. I happened to see the doctor at the charge nurse’s desk at the exact moment my wife was admitted to the NH. I asked if we could meet to discuss my wife’s medical history, but he said he already read her history, so there was no need to meet. I also said I’d like to update him on her recent history with medications she had been taking until a brief hospitalization that same week, but, again, the doctor said there was no need to meet because he already had that information as well.  

Two days after my wife’s admission, I started receiving calls from the NH about her anxiety issues. The next day, I asked the dementia unit charge nurse to see a list of my wife’s medications and discovered that the NH doctor had not placed her back on any of her anti-anxiety medications. I asked why, and the nurse said she’d call me back after speaking with the doctor. The next day, the nurse called me saying that it was because my wife had not been taking those medications during a hospitalization that occurred between her ALF discharge and NH admission. I told the charge nurse that her neurologist had only temporarily removed those medications to see if they were possibly causing other issues that led to her hospitalization and that the neurologist planned to place her back on those medications upon hospital discharge.

I then asked to speak with their on-call psychiatrist. The next day he returned my call. We spoke briefly, and he agreed that my wife should be placed back on at least some of her anti-anxiety medications right away. As soon as my wife resumed taking those medications, many of her anxiety issues disappeared. Within weeks, after more conversations with the psychiatrist, more anti-anxiety medications were added back. Had the NH internist taken a few minutes to discuss Clare's medication history with me on the day she was admitted, my wife wouldn’t have had to suffer needlessly for so long.

LTC doctors ought to understand that some AD caregivers can provide a great deal of helpful information. Some AD caregivers are extremely well-informed about the medications taken by their loved ones and well-versed in their medical history.  

I would like to suggest one simple practice to all LTC physicians: whenever new AD residents or patients are admitted to your facilities, schedule appointments with their primary caregivers as soon as possible. Brief 10-minute meetings with them to review medical histories and medications may provide you with helpful information and insights that do not appear in any of your medical charts or reports, records that can often be incomplete or inaccurate.

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Dr Vann writes a bi-monthly Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, June 26, 2018.  Access at:   https://www.managedhealthcareconnect.com/blog/communication-between-ltc-doctors-and-caregivers