It is a very complex conversation and I am sure it will continue.
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September 10, 2018
I have given much thought to your recent posts on BPSD (Behavioral and Psychological Symptoms of Dementia) and the abolition of such. I have attempted to share comments several times, did a little on one of your posts, but for the most part was overwhelmed by the implications you present and therefore I went into “hyper-thought” to try to make some sense of the situation (at least for myself!)
While I agree with you strongly, and join you in your fight for “Human Rights” for people diagnosed with Dementia/Alzheimer’s, I also feel that I need to clarify in my mind what it is that WE (or at least I) am/are actually dealing with here.
First issue—Good vs Bad People and Caregiving Partners:
There are Good People and Bad People. There are good intentioned people who make bad choices and ill intentioned people who think they are making good choices. And there are people on the continuum between the extremes.
How caregivers provide care is also on a continuum of good to bad, informed to uninformed, appropriate to inappropriate, etc. These continuums affect how people diagnosed with Dementia/Alzheimer’s are treated and how the care they receive is given.
There is a difference in care given by family and friends vs paid caregivers. There is a difference in care given when the person diagnosed with Dementia/Alzheimer’s lives at home or lives in a memory care facility. How a person receives care differers greatly when they live alone, have no family or have been ignored by family.
I know that based on the experience of many relatives, the care given in many memory care facilities, is unconscionable and with little respect for Human Rights and more for the facilities convenience, but that does not condemn all such facilities!
Finally, the nature of those diagnosed with Dementia/ Alzheimer’s and the nature of their family caregivers, will determine the reactions and changes and response to being part of the caregiving team. Caregiving teams which are used to RESPECT will most likely continue to operate with respect. Those teams which were ARGUMENTATIVE, DEMANDING, and or INCONSIDERATE will most likely continue to operate in that way.
Second Issue—Good vs Bad Labels:
While labels can be harmful, I believe that they are also useful and necessary. Some say that we should not have to categorize or label and that the labeling itself is part of the problem. I believe that labeling and categorizing can be part of the problem but it is also part of the way in which the human mind comprehends, deals with, and makes decisions with regard to the every day complexity of life!
I believe that labeling must remain flexible, open, nonjudgemental, and subject to careful, continuing scrutiny and the willingness to change. STEREOTYPING, NO, but understanding our life through categorizing and labeling is how we all make sense out of complicated issues as well as helping us to make every day decisions.
Third Issue—BPSD A Good Label or Bad Label?:
Using the term BPSD (Behavioral and Psychological SYMPTOMS of Dementia) does MIS-REPRESENT many of the NORMAL HUMAN REACTIONS that people diagnosed with Dementia/Alzheimer’s experience and present. There are changes in behavior which take place, which most likely reflect the confusion and frustration, memory loss, and especially with the loss of language which comes with the disease. I believe that early in the disease, many behaviors incorrectly considered symptoms really are “human nature.”
But I also believe that at times Dementia/Alzheimer’s DOES have symptoms, especially as the illness progresses, as cognition and language are compromised, as the brain is not able to function as normal. Examples of SYMPTOMS of Dementia are loss of language, forgetting, verbal repetition, hallucination, confusion of past and present, eye/hand coordination, difficulties walking, etc. Getting frustrated and angry because of the inability to explain ones needs is a HUMAN REACTION, messing ones pants is a DEMENTIA SYMPTOM.
Perhaps there needs to be two sets of labels to differentiate? BPSD (Behavioral and Psychological Symptoms) and BPCD (Behavioral and Psychological Changes?)
Fourth Issue— Human Rights and Use of Drugs:
Use of drugs to support people diagnosed with Dementia/Alzheimer’s is NOT ALWAYS BAD! Sometimes the use of drugs is necessary. It can be beneficial when used after all other options are exhausted, when used in the person’s best interests, when using the lowest possible dosage, and when being monitored carefully.
The first line of inquiry must be finding out the source of desire, need, confusion, frustration, discomfort, or pain. This is especially difficult and time consuming, but absolutely necessary, especially when the person no longer has use of language. Not excusing it but rather stating the reality of it.
Fifth Issue—Human Rights vs Loss of Rights:
I am not living with the diagnosis of Dementia/Alzheimer’s, and while I can empathize, I know that I can never really know what it must be like to slowly loose my cognitive and language abilities, among others. So I can only look at them through the lens of my own “normality” not the lens of one diagnosed with the disease! I can imagine but will never really know!
Through my lens, when the person diagnosed with Dementia/Alzheimer’s can no longer use language to express their needs/desires, when their cognition no longer functions in what we know and experience as “normal,” when issues of safety and maintaining health are at stake, then decisions must be made on their behalf, always of course with their best interests in mind. This arbitrarily means a loss of rights for the person to decide for themselves.
Sixth Issue—Time and Place:
Each of the previous issues and how they are dealt with depends on the stage of the disease, the behaviors presented, and the care location (home or memory care facility.) In a perfect world we would know when and where and how to work with each with every behavior presented. We would have time and energy to understand the needs even when the person diagnosed can no longer express themselves. However, this is not a perfect world. We can only WORK TOWARDS PERFECTION when it comes to helping human beings live the best life possible.
Seventh Issue—Human Nature/Existence—The Same Only Different!
Due my need to clarify, through GRAY and not BLACK & WHITE, how I look at life and the trials it brings to us and those we love, everything I have talked about above, has to do with doing one’s best to live a loving, active, productive, compassionate, respectful (among other descriptors) life.
When any catastrophic illness or experience strikes, whether Dementia/Alzheimer’s, Cancer, suicide, accidental or sudden death, etc; the true colors of the people involved in the caregiving team and in the drama of life raise to the top. Depending on how the team entered the experience, they most likely will exhibit the same ways of dealing with the situation. Sometimes they are able to raise above their usual. Hopefully, everyone will come through the experience (or at times ending up on the other side of life) in a way that respects and supports all players as deserving human beings.
Maybe the solution, based on the thinking that has helped me put this essay together, is to say:
"Labeling and medicalizing behavioral and psychological symptoms due to dementia, can be harmful and wrong. Many are not really SYMPTOMS but rather HUMAN BEHAVIORAL RESPONSES which are complicated and at times exaggerated due to the nature of Dementia/Alzheimer’s as it progresses.
Perhaps two labels would suffice: 1) BPSD (Behavioral and Psychological SYMPTOMS of Dementia) and 2) BPCD (Behavioral and Psychological CHANGES with Dementia.)
Also, we must strive to make sure that if solutions are not obvious and at times not available, if the presenting difficulties are not amenable to usual solutions, then: 1) utmost care must be taken to keep the individual’s human rights in mind when making decisions that affect those rights, 2) such decisions must be in the person’s best interests and not those of other individuals or institutions, 3) such decisions must be loving, respectful, and compassionate and reflect best practices and 4) be the least invasive possible.
We should work on looking for better solutions, provide more support to caregivers and staff, increase staffing so time is available to listen and to look for solutions, and provide more time to training caregivers and staff.
Know that we can only do the best we can do in caring for people who are at advanced stages of Dementia/ Alzheimer’s and we must always be mindful that no matter what stage, they are human beings who deserve the best care possible!!! We must remember to treat them as we would want to be treated!