PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Sunday, June 7, 2015

To Use or Not To Use Drugs

... that seems to be the question recently in a number of readings I have done recently about treating Dementias, like Alzheimer's.

As a noun, a drug is...
(a chemical substance used in the treatment, cure, prevention, or diagnosis of disease or used to otherwise enhance physical or mental well-being) the word does not sound too bad.

As an adjective, drugged is...
(unconscious or in a stupor as a result of taking or being given a drug it sounds horrible) and maybe that is the difference. 

All too often, one hears stories about the overuse of drugs in memory care facilities as a way of "controlling" the residents so they are easier to handle. The stories also talk about the use of these drugs to make the job of Resident Care Associate easier, to prevent situations in which families can sue the facility, and/or to allow for a larger resident to staff ratio and therefore to allow the bottom line of a higher profit for operating expenses.

For the record, I am totally against the use of drugs for any of the above paragraph's reasons. It is inappropriate, inhumane, and disrespectful. This is no way to treat others and I certainly wouldn't want to be treated this way myself.

I agree that there are many other ways to handle Residents "responsive behaviors" by trying to find out and discovering why the Resident is angry, unhappy, resistive etc. 

This usually helps to solve the problem. This is so important in the advanced stages of dementia especially when the Resident has a reduced availability of language use with which to communicate or is no longer able to communicate at all.

But there are times, HERE IT COMES, when the use of drugs is appropriate and takes the best interest of the Resident into consideration. I believe this and have experienced at least four ways in which this is so.

When Gregory was first diagnosed with Alzheimer's some eleven years ago, we started with Aricept. The drug's hope was that it would slow down the disease and in his case I guess it has since he has been able to live an active, involved, quality life for ten years after the diagnosis. A caveat here is that I am accepting the diagnosis (Dementia/Alzheimer's) as all other possible causes of the symptoms we were experiencing were ruled out. 

When the Aricept was begun, a spike in Gregory's abilities was visible and the doctors were surprised and pleased since the drug was supposed to "slow" not "improve." In Gregory's case it "improved" but the improvement were short lived and after three or four months his abilities began to slowly fail. 

At this point we added Namenda to the mix and again there was a spike in Gregory's abilities, surprising the doctors. This time it lasted and only slowly declined for some 9 more years. We say that each individual's experience with Dementia/Alzheimer's is unique and possibly the way Gregory reacted to the drugs was unique to him.

During the eleventh year, Gregory's abilities began to fail dramatically. I took him off both of the Alzheimer's drugs for two reasons. If their purpose is to slow down the disease, what does "slowing" mean at the more advanced stages? Secondly, if we were able to clear the drugs out of Gregory's system and then reintroduce them some months later, would we experience the spike that we had experienced when they were first administered?

I use the term "WE" here because by now Gregory was no longer able to monitor his situation so my observations were pivotal. All of my decisions about Gregory have always been made with love and for his benefit, not for mine or anyone else. For example if a decision was good for Gregory but bad for me, I made the decision anyway knowing that Gregory could no longer change ... but I could!

The reintroduction of Aricept and Namenda did not cause the spike that I had hoped for. I was disappointed as you can imagine. But then things began to get so difficult for me to provide at home that I made the decision to find Gregory a place that could meet his increasing needs.

I might add that having to move Gregory had nothing to do with my health, or frustrations at providing for him, I would have gone on until I probably died first, as many caregivers do. But Gregory's needs became so great that I literally could not provide for them at home and by myself.

Now Gregory was living at The Lieberman Center, Special Memory Care Unit and we were both very happy with the care he was receiving. We talked about the move and he was accepting. To this day, maybe because of his difficulty with language use but I don't think so, he has never once asked "Why am I here?" or told me "I want to go home." Lieberman is his new home, community, and he seems content to be there.

As needs arrive I can talk with the Social Worker and/or Head Nurse and make decisions about Gregory's care. He can no longer communicate his needs so I have to be responsible for making sure he is being well taken care. The staff at Lieberman was and is wonderful and help me make decisions and when I needed more information or to be "educated" about a particular medical situation they are there for us.

So far we had had two good experiences with drugs, the beginning Aricept and Namenda.  Next the Medicare people decided to change his Aricept to the Exelon Patch. I am not totally sure of the reason but knew that the patch was easier to administer and also through the skin went directly into the blood stream without interference from the stomach architecture and chemistry.

Surprise. Once on the Excelon Patch, Gregory spiked in ability (although not to previous highs but based on his new lower level of functioning.) I was so pleased to see the return of some behaviors and abilities that had been gone and/or lost for a long time.

As the Dementia/Alzheimer's progresses of course the abilities and behaviors change. By now Gregory has NO language for his use so I have to make all decisions based on how he presents himself, what the medical blood tests say, his level of discomfort and/or frustration, his appetite, and other observations, etc.

Next, Gregory became unhappy, started crying a lot, would get into "babbling" and not be able to stop until he had elevated himself into a "tizzy." He was striking out and resistive in his responsive behaviors and that made it very difficult for the RCAs to change and clean him. It sometimes took four people to give him this support when changing a pee/poo and when showering or sponge bathing him.

In a very hard decision on my part, and one that was supported by the nursing staff and carefully explained to me and very carefully administered to Gregory, we began Gregory on a low dose of Risperdal, an antipsychotic drug.

It took him about a month of being sleepy, lethargic, "out of it," until the level of drug could be found and until he could get used to the side effects. Every day I would visit and hold his hand. Sometime he would be awake, other times awake but not present, other times asleep. When he was "with me" I would explain that he was feeling so sleepy because of a new drug he was taking to "make him better." I promised him that it would slowly get better. He seemed to understand or at least trusted me as he closed his eyes and drifted off again.

Short of a month later, Gregory was back with us. Happy, content, cooperative, not resisting, not having any need for responsive behaviors. His life was good again and some of the quality had returned. 

It was a wonderful decision and worked well for Gregory at his advanced stage of Dementia/Alzheimer's. This lasted for about a year but now some of the old difficulties have returned. Perhaps as the disease progresses or perhaps the Risperdal becomes less effective, so we have decided to increase the dose a tiny bit to try to offset some of Gregory's resistive behaviors. 

At this point one cannot look for other ways of dealing with the resistive behaviors short of NOT bathing him, NOT changing his pee/poo pants, NOT getting him dressed in the morning, NOT trying to get him comfortable in his Broda wheelchair as the fear of his grabbing you and hurting you.

Before the Risperhal he did grab a RCAs wrist, twist, and sprain it. He was not being violent just frightened, or confused, or angry. But none the less he hurt someone else. Recently when I was too much in his space, he pushed me away not injuring me but breaking my glasses (which I now am more careful to protect.) 

So the long and short of drug use, in my opinion and experience, and in Gregory's experience as well since I now speak for both of us as he is no longer able to: the careful, studied, loving use of drugs at various stages of Dementia/Alzheimer's can provide helpful, respectful, caring results.

At a certain time in the progress of the disease, one must make tradeoffs to provide a safe, comfortable, content life for the person who needs it. As I mentioned in a previous post, the words of Dr. B sums it up for me:

Several times Dr. B referred to Gregory at "That poor guy..." While that made me sad it did emphasis some of what Gregory is probably still "suffering" because of his level of awareness combined with the level of his dementia. For example, "That poor guy cannot process what he is experiencing because of his lack of language. So if it is other than a very basic, over learned, instinctual experience, the experience probably does not make much sense to him."

Another example Dr. B gave is that Gregory seems to demonstrate a certain level of anxiety, fear, and discomfort if only because he is not able to analyze an experience using language. "That poor guy does not know whether he can trust an experience or if he needs to fear it." You have heard of the very basic "Fight or Flight" instinct.

With the careful, loving use of drugs, I am content in knowing that Gregory does not have to worry about analyzing an experience for fear or trust. Also, he is better able to communicate, using the basic, primitive abilities he has left, to let me (us) know when he is happy, content, sad, or frustrated. And because his responsive behaviors are more under control, we can adjust ourselves to them and make his day to day life as good as possible for him.


  1. Michael, I respect your ability to make Appropriate choices with respect to Gregory's care as well as appropriate choices with respect to the administration of drugs with respect to Gregory's care. It sounds like you have done everything possible to avoid their use.

    Where I object to the use of drugs, and antipsychotics in particular, is in them being administered to people as a first choice in addressing "problematic" responsive behaviors that may have been avoided by more carefully assessing and addressing potential environmental and care delivery factors that may have resulted in the problematic response behaviors in the first place.

    I believe antipsychotic drugs should be used only after every possible other avenue has been explored because in my experience these drugs are being administered in an irresponsible way that endangers people with dementia who are vulnerable and unable to make their own decisions.

    Further, I believe that many care facilities, and I'm not in any way implicating any specific facility, I'm just saying that many facilities overmedicate their residents to reduce costs and the burden on care staff the number of whom are often insufficient to properly care for the patient population within the facility.

    I am further investigating prescription rates of Risperdal and Seroquel in Canada and my preliminary research indicates to me that the rates of prescription of antipsychotic drugs to the elderly or those with dementia at a young age is far above what it should be.

    my experience is that caregivers are not properly supervised and monitored with respect to how they interact with people with dementia. You yourself said in a previous post that you are not present in the room when Gregory is attended and his personal hygiene requirements are addressed. So how do you know whether the caregivers use tools and techniques during the process that would minimize and mitigate "resistive behaviors."?

    My experience is that people have told me my mother is violently aggressive. Butt she is never violently aggressive with me. Nor is she violently aggressive with her one-on-one caregivers. So why is she is never violently aggressive with us, and violently aggressive with others?

    It sounds to me that you have taken responsible and conscientious approach.

    However, that said, I tend to trust my own observations than I do that of others.

    Perhaps we on the same side of the fence, but I think the use of antipsychotic medication in elderly people needs to be carefully examined, assessed, and quite frankly, curbed.

    1. Thanks Susan. I appreciate your lengthy thoughts and honesty in reply. Yes the use of Risperdal for Gregory was after much study, discussion, and as a last resort. I agree with everything you said: shouldn't be first resort, decision must be made with awareness and love especially if person can no longer make decisions for themselves, many places do take advantage of the use of drugs to make their job easier (which while totally wrong I have to admit it is probably one of the hardest jobs in the world.) I will not question ethics or honor but there is a lot that could be discussed I am sure. Do not know about elevated costs as fortunately Gregory's medications are paid by his health care. The caregivers at Lieberman are well trained and supervised so I am fortunate here. Manny, our private pay person, is in with Gregory when they change him. He just cannot operate the lift but can assist and is a calming, friendly face. According to him when Gregory is loudly verbal during a change, most of it is due to his fears and physical discomfort, some is "just in his head," But then again he is a tall, strong man so even with care he has the right to be upset because getting cleaned up is an ordeal no matter how gingerly it is approached. The only reason I am supportive of drug use stands firmly on its being, as you say, carefully examined, assessed, and as much as possible curbed. We are not only on the same side of the fence, we are sitting next to each other on shared rockers!

    2. I failed to mention that there are a few RCAs with whom Gregory does not get along. They do not take it personally and avoid helping him if possible. We are fortunate to be at a facility that is a not for profit, religious based (although non-denominational acceptance and care) organization whose bottom line besides having to operate in the black is to provide loving, best practices care.


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