Antipsychotic Drug Use Discussions Continued

This is a reply to a friend who blogs out of Australia. She is a person with dementia and I respect her point of view from my vantage point as a caregiver to Gregory. She and I are basically on the same page regarding most things but I wanted to process my thoughts about antipsychotic drugs in writing.

Kate, Your comments are always well formed and researched giving our part of the caregiver team much to think about. As you know from previous discussions between us, I AGREE for the most part with your stand and also DISAGREE somewhat with your discussion of the use of antipsychotics, so will carefully add my comments. 

1) AGREE that it is wrong to use drugs for “challenging behaviours” and BPSD which can often be deflected using other methods. 

2) Especially AGREE that the FDA has not appropriately tested these drugs and that "black box" warnings should be part of the information shared with family. 

3) AGREE that it is horrible that “Almost 300,000 nursing home residents are currently receiving antipsychotic drugs, usually to suppress the anxiety or aggression that can go with Alzheimer’s disease and other dementia.” I know that many of those residents could and should treated differently. But, I also wonder how many residents are NOT receiving antipsychotic drugs? You know often statistics can go either way!

4) AGREED that often facilities are understaffed and therefore not able to provide appropriate, adequate care for their residents even with well trained and well meaning staff. 

5) AGREED that often caregivers are poorly trained or undertrained and therefore not equipped to offer alternative handling. 

6) AGREED that facilities are often over populated with administrations mainly concerned with bottom line. 

7) AGREED that all of these situations lead  to the CARELESS, INAPPROPRIATE use drugs to “control” residents. 

4) Use of antipsychotics is not an all or none call, black or white. I BELIEVE that perhaps 80% of the time drug use is inappropriate but 20% of the time it is appropriate. But I am just pulling these numbers out of the air! I BELIEVE that often, drug use can be and is carefully administered and monitored. (A P.S. is that thank G*D that the use of physical restraint is illegal (at least in the U.S. and in Illinois.) 

Here comes my look at my personal experience which I would believe is the case for many people in the same situation.

1) In Gregory's case and at his end stage of Young Onset Dementia/Alzheimer’s, the use of CAREFULLY MONITORED, MINIMALLY DOSED drug has given him back quality of life by allowing him to approach life more comfortably, without agitation, fear, confusion, other Dementia/Alzheimer’s symptoms and the responsive behaviors usually associated with them (while Gregory is NOT any of these it can SOMETIMES CAN LOOK LIKE aggression, resistance, striking out, violence, fighting back - and I use those descriptions with pain in doing so because that is not really what is happening and definitely NOT who Gregory is or ever has been.)

2) It allows Gregory to spend each day without fear since he no longer has language to help process externally or internally whether he is safe or in danger and therefore needs to resist or strike out in unique uncomfortable situations (such as being cleaned up after soiling himself or receiving a sponge bath, activities with no matter how he fights must be accomplished.  I have observed and assisted in these activities and even with my presence and with CNAs and nurses being gentle and loving in their ministrations these are difficult experiences for Gregory.) 

3) The memory care facility where Gregory lives is so on top of health care that often they see things that need attention before I become aware of them and I am the closest one to Gregory. For example, within one meal cycle they were able to provide meals that wouldn’t aggravate or complicate his diarrhea which the CNA observed and reported that morning. A scheduled “Care Conference” with all involved players takes place very quarter and I can meet with the head nurse or social worker whenever I identify the need. Even on these in-between meetings involved players will join us - for example if it has to do with meals, the nutritionist, dietitian, and kitchen director may join us. The facility takes at least this amount if not more care when prescribing and administering antipsychotic drugs. P.S. Not to mention how closely they are monitored by the state with licensing, guidelines, periodic investigations, etc. I trust and believe in the people who run Gregory’s memory care facility and short of periodic occurrences due to “human nature” I have had no complaints about the care he receives. It is important to recognize that there are institutions out there that DO provide GOOD care!

3) “Long term” needs to be defined because by the time most people with Dementia/Alzheimer’s need the drug, it will not be for a “long term."

3.5) And this is very personal, in my eyes the increased risks (heart failure, infections and death) are minimal when compared to the twelve year journey Gregory and I have been on, his progress with the disease, his loss of ability, his current diminished situation, the frightening experience each day becomes without use of the drug, and the knowledge that he will continue to have a more difficult time as the disease wins more of him. In all honesty, I love him and want him with me but feel that wanting that under all costs is selfish. Because I love him so, I also am ready to let him “Go Home” when he is ready and hopefully sooner rather than later. He and I discussed this while he was able and the guide lines we set up are: no heroics, do not resuscitate, do not do anything that will inadvertently prolong life. If I am dying, or if it looks like I am dying, do nothing but hold my hand and let me go. If I survive that means I was not ready to go. If I do not survive that means I welcomed death. Staying alive at all costs is not what we want.

So in summary agreed that the use of Antipsychotics is a very controversial, difficult area that needs special attention and close monitoring for people with Dementia/Alzheimer's and that it is very easy to abuse drug use especially for people who cannot advocate for themselves, but it should not be ruled out completely in all cases under all circumstances but rather administered and monitored in appropriately identified situations and done so carefully, mindfully, humanistically, lovingly.