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.

Behind the Door

This is the door to Gregory's room at Lieberman Center. All of the rooms at the center are private which is fortunate for the residents.

When it is time for Gregory to be changed from a poo or pee, two RCAs (Resident Care Associates) bring the Hoyer Lift into his room (he needs to be transferred to the bed by a lift machine) and close the door.

Manny is the third person in the room to provide continuity, a friendly face (not that the RCAs have unfriendly faces,) and to provide a calming influence while the RCAs proceed with the work of changing Gregory.

When I am there, I do not stay in the room but step out and sit in the hall. Sometimes it is all I can do to stay seated and not burst into the room!

Gregory is not completely cooperative with his changing. He is uncomfortable, frightened at times, and possibly in some pain with the lifting and rolling and cleaning of skin. He shouts out loudly, stiffens his body, and at times swears.

His "responsive behaviors" can be frightening to someone listening, often cause the RCAs extra work and care, but must be recognized for what they are: Gregory responding to the experience without the use of language available to him.

How would you like to be hoisted in the air, swung over to the bed, dropped in place, get your wet/dirty clothes pulled off, get rolled this way and that, have many people in the room as you lie there naked, have your privates cleaned, get a new set of "paper pants," have new clean clothes pulled on, get hoisted up again, and dropped back into your wheel chair. YOU WOULD YELL TOO!

According to Manny much of the "noise" Gregory makes is due to what is going on in his head, not necessarily because of pain or discomfort. "OUCH! DAM IT! GET AWAY! NO,NO,NO! OH GOD! I WON'T" are some of the expletives. Now and then Gregory growls and often he laughs as part of the routine.

When it is over and done, and the door is open, I get up and go into the room, thanking the RCAs and renewing with Gregory the knowledge of my presence. "Hi love. I am back. You did a good job."

After a few minutes Gregory is calm and back to "normal." It is as if the ordeal never happened. And that is part of the blessing of dementia, Gregory no longer holds on to the event and gets on with whatever is next, like a drink of water, a piece of chocolate, or turning on the TV.

Responsive Behaviors

On my friend Susan's blog, she received these comments which put violence and aggressive behavior by persons with dementia into a better perspective:

I am the CEO of the Alzheimer Society of Chatham-Kent in Ontario. Having worked with people with dementia for over 20 years, I have learned so much but also acknowledge that there is so much more to learn. Every day our clients and the staff from our Day Program, Respite Program or Counselling Program reveal something new that needs to be considered when giving care.

If you would be so kind as to indulge me, I wanted to share with you the terminology we use for “aggression” and “violence”. Since those two words immediately bring images and thoughts which put those with dementia in a negative light, we have come up with a term: “Responsive Behaviours” which translated means “all behaviour has meaning.” This fits perfectly with the questions you recently posted on your website. So instead of using aggressive or violent, we say the person is exhibiting Responsive Behaviours which may be caused by environmental or medical needs.