Tuesday, September 4, 2018

The Term Behavioral and Psychological Symptoms of Dementia (BPSD) Can Do More Harm Than Good

My friend and colleague in the area of Dementia/ Alzheimer's Care, Kate Swaffer, who also has been diagnosed with Dementia in her middle 40's, wrote the following in a recent blog post:

"To say I honestly believe, with every cell in my body, that the notion of BPSD (the Behavioural and Psychological Symptoms of Dementia) as a helpful term, and the labels within it being due to the pathology of dementia, is harmful, is an understatement. I’m sure the term itself is doing harm, to the point it should be removed completely from all dementia policies, programs, and care plans."

Basically, she is talking about the human rights of people diagnosed with the disease and how they are cared for and how their rights are so often violated.



I AGREE, I AGREE ... but ... I feel that we need to go further. We need to qualify and/or to suggest alternatives. I also believe that perhaps we must also acknowledge the changing need to use BPSD language based on the advanced stages of Dementia/ Alzheimer's. I do not know what these alternatives might be but feel that minimally the "qualification" must be acknowledged.

At a certain stage, perhaps it is not a question of a person's rights but rather more their comfort, safety, and the safety of others! These decisions must always be made with the person's best interests in mind and based on "best practices" and available research (often times the interpretation of available research being more complicated in itself.) 

I know that the rationale of comfort and safety are often used as the excuses, but I would prefer to place the blame on the availability of staff time, on staff training, greedy "bottom line" profit facilities, on available research, and on those of us who look for answers to better care not looking far enough!

At times these decisions are not easy ones to make on behalf of another, emotionally or intellectually! But as someone who loved and lived with a person who lived with Dementia/ Alzheimer's, I experienced the need to make these decisions.

In the many presentations I have made on Gregory's and my journey, I too red flag the "medicalization" of the disease in favor of redefining and reestablishing the sense of home, family, and relationship. Towards the end of Gregory's journey, these changes to normalize our situation, reflecting the changes in Gregory's needs, sometimes took place on a daily or hourly basis. Discussing the "medical condition" did not help much.

When Gregory moved to a Memory Care Facility, however, I was faced with many of the concerns which Kate expresses. I negotiated his care, advocated for him, and was involved in all decisions made on his behalf. I was, however, also willing to listen to suggestions, best case scenarios, and to accept the limitations of what the facility was able to do.

I was fortunate that I was able to hire a daycare person to be with Gregory seven days a week from 11:00 to 7:00 pm to provide the social/emotional and additional physical needs which the facility could not provide.

Even though the facility scheduled a head nurse for the unit, two floor nurses, a secretary, custodians, food service people, and more CNAs (certified nurses assistants) than required by the state, there was never enough time to met the real needs of all residents!

They were able to meet the minimal needs but that certainly should not be enough! I also fought for changes within the facility and often helped make change!

While I avoided "medicalizing" our situation, I did need to begin taking the medical into consideration as Gregory's situation worsened, variously including changes and the deminishing of abilities  in the area of cognitive issues as well as physical, mental, physiological, psychological, social, emotional, medical, etc ... and which was complicated by the many ways in which his needs expressed themselves.

I have gone through Kate's list and responded (sometimes offhandedly with no disrespect meant) to her beliefs based on condemning the practices without offering solutions. I know that first, awareness comes, then solutions. But I am always uncomfortable stating something as a truth when under certain conditions it is not a truth. I personally need to at least clarify the possibility both!

Also, I in NO WAY want to diminish Kate's concerns and her noble work to make life as good as possible for those diagnosed. I have great respect and love for this woman. 

Having known her via the internet for the last five years, I had the opportunity to meet her in person (she lives in Austrailia) at the 33rd annual Alzheiemr's Disease Conference, here in Chicago last July, at which we both made presentations. I have come to respect her work even more if that is possbile! 

I need, however, to state my discomfort in "talking problems" without "talking solutions."

Perhaps instead of BPSD, one should talk about changes in BPSD that may or may not come about at the various stages of Dementia/ Alzheimer's!

The following then, in italics, is taken from Kate's BLOG.

IN CAPITALS are my comments. 

Some of Kate's comments should be easy to solve, others are not. I have tried to address both.

  • Labeling and medicalizing normal human responses to dementia is harmful and wrong.
  • AGREED BUT AT VARIOUS STAGES OF DEMENTIA/ ALZHEIMER'S THE ALTERNATIVES ARE NOT OBVIOUS.

  • Labeling and medicalizing normal human responses to being segregated are wrong; this is also a breach of our most basic human right under the CRPD.
  • IS IT NOT POSSIBLE THAT THE "SEGREGATION;" WHICH ITSELF CAN BE INTEGRATED WITH PEOPLE OF VARIOUS SEXES, RACES, RELIGIONS, AGES, ETC; BE A GOOD THING AND HELP CREATE A NEW SENSE OF COMMUNITY WHICH BY ITS NATURE IS MORE COMFORTABLE, PREDICTABLE, AND EASIER WITH WHICH TO COPE?

  • ARE THESE RESPONSES, OFTEN CAUSED BY DYSFUNCTION OR MALFUNCTIONING OF THE BRAIN STILL CONSIDERED BASIC HUMAN RIGHTS? 

  • Labeling and medicalizing normal human responses to being physically restrained is wrong; even people without dementia do not want to be locked up, and this is also a breach of our most basic human right under the CRPD.
  • AGREED THAT PHYSICAL RESTRAINT IS WRONG UNDER ANY CONDITION BUT ARE "LOCKED FACILITIES" WRONG WHEN COMPARED TO A PERSON'S GETTING LOST, HIT BY A CAR, FROZEN TO DEATH IN THE WINTER, THE FEAR OF BEING LOST WHEN REALIZING THEY DO NOT KNOW WHERE THEY ARE (POSSIBLY OUTSIDE IN A NIGHTGOWN OR NUDE?) 

  • IS THE DISCOMFORT AND PAIN IN BREAKING A LEG OR ARM WORTH NOT PROTECTING THE PERSON FROM FALLING DOWN A FLIGHT OF STAIRS OR NEEDING A CHAIR ALARM? 
  • Labeling and medicalizing normal human responses to chemical forms of restraint is wrong.
  • WHAT SHOULD HAPPEN WHEN A PERSON'S QUALITY OF LIFE IS SO PAINFUL DUE TO DEPRESSION? CONFUSION? FRUSTRATION? VIOLENT BEHAVIOR (NOT THAT THE PERSON IS VIOLENT BUT THE EXPRESSION OF THEIR DISCONTENT RESULTS IN HARM TO SELF OR OTHERS?)

  • IN REAL LIFE PEOPLE TAKE TRANQUILIZERS, ANTIDEPRESSANTS, AND ANTIPSYCHOTIC DRUGS WHEN NECESSARY WITH CAREFUL, CAREFUL MINIMAL DOSAGES AND MONITORING. SHOULD THAT NOT BE A RIGHT FOR PEOPLE DIAGNOSED WITH DEMENTIA?

  • Labeling and medicalizing normal human responses to feeling lonely and wanting someone to take notice of you as ‘attention seeking” or ‘a screamer” is wrong.
  • NO ONE SHOULD FEEL LONELY OR NEGLECTED BUT OFTEN TIMES THIS IS THE RESULT OF NEGLECTFUL FAMILIES. 

  • A PERSON SCREAMS FOR A REASON. CARE FACILITY STAFF DEFINITELY SHOULD PAY ATTENTION TO SOMEONE SEEKING ATTENTION, ESPECIALLY WHEN THE PERSON CAN NO LONGER FIND LANGUAGE. THE FAULT IS STAFF NOT HAVING ENOUGH TIME OR ADEQUATE TRAINING NOT NECESSARILY THAT THEY DO NOT WANT TO LISTEN.
  • Labeling and medicalizing normal human response to the need to walk as wandering is wrong; everyone needs and wants to walk!
  • YES EVERYONE HAS THE NEED TO WALK BUT WHAT DO YOU DO WHEN THEY DO NOT RECOGNIZE DANGEROUS SITUATIONS? WHAT WOULD HAPPEN IN THE FACILITY WAS NOT LOCKED?

  • Labeling and medicalizing normal human responses to being ignored is wrong.
  • NO ONE SHOULD BE IGNORED OR HAVE THEIR NEEDS IGNORED BUT WHAT HAPPENS WHEN THE PERSON CANNOT EXPRESS THEIR NEEDS. YES, THERE ARE OFTEN NON-VERBAL SIGNS THAT WILL TELL OF THE PERSON'S NEED. SOMETIMES MEDICAL TESTING CAN REVEAL WHAT IS CAUSING THE DISCOMFORT. BUT OFTEN THERE IS NO OBVIOUS CLUES TO THE UNDERSTANDING OF THE NEEDS. 
  • Labeling and medicalizing normal human responses when someone is unable to communicate their needs or wants is wrong.
  • THIS IS PROBABLY ONE OF THE MOST DIFFICULT SITUATIONS TO OVERCOME AS MENTIONED IN SEVERAL POINTS ABOVE.

  • Labeling and medicalizing normal human responses to untreated pain is wrong.
  • AGAIN YES, YES, YES. I PLACE THE FAULT WITH THERE NOT BEING ENOUGH TIME FOR OR TRAINING OF STAFF TO LEARN HOW TO LISTEN. 

  • Labeling and medicalizing normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and out of choice, almost no one wants to live in one.
  • AGREED! BUT OFTEN LIVING AT HOME IS NOT AN ALTERNATIVE. MOST OFTEN AT CERTAIN TIMES, LIVING ALONE IS NOT AN ALTERNATIVE. WHAT DOES ONE DO? FAMILY IS NOT ALWAYS AVAILABLE.

  • Labeling and medicalizing normal human responses to being forced to eat with a group of strangers is wrong; when I go to a restaurant, I sit with my family or friends!
  • BEING OFFERED A CHOICE IN SEATING, CHANGING SEATING WHEN NECESSARY, ALLOWING A PERSON TO TAKE THEIR MEAL IN THEIR ROOM, AND ENCOURAGING FAMILY AND FRIENDS TO JOIN MEALS MIGHT HELP WHEN A PERSON IS IN A MEDICAL CARE FACILITY. BUT IS IT BETTER TO PROMOTE ISOLATION THAN IT IS TO FORCE AT TIMES INTEGRATION WITH OTHERS?
  • Labeling and medicalizing normal human responses to being forced to do an activity you don’t like, or don’t want to do, is wrong.
  • NO ONE LIKES TO BE INVOLVED IN SOMETHING THEY DO NOT WANT TO DO. BUT IS IT BETTER TO HAVE NOTHING TO DO? OF COURSE, GIVEN ENOUGH PARAMETERS PERHAPS THE STAFF COULD FIND SOMETHING THE PERSON WOULD WANT TO DO BUT AGAIN THERE IS THE TIME AND TRAINING CONUNDRUM!

  • Labeling and medicalizing normal human responses to being forced to eat food that is spiritually or culturally inappropriate for a person is harmful.
  • AGREED! ALTERNATIVES SHOULD ALWAYS BE AVAILABLE.

  • Labeling and medicalizing normal human responses to not liking the food you are served is also wrong.
  • AGREED BUT MORE DIFFICULT THAN ABOVE. ALTERNATIVES SHOULD BE OFFERED FOR ALL MEALS.
• • • • •

Maybe the solution and one that would sit better with me is to say, 

"Labeling and medicalizing (as BPSD) normal human responses to dementia, can be harmful and wrong. If solutions are not available or obvious, if the presenting difficulties are not amenable to usual solutions, labeling as BPSD and medicalization of normal human responses to Dementia should only be used as a last-ditch effort but should be avoided unless absolutely necessary. 

We should work on looking for better solutions, increase staffing so time is available to listen and to look for solutions, provide more training to staff, but sometimes know that we can only do the best we can do in caring for people who are at advanced stages of Dementia/ Alzheimer's, always being mindful that no matter what stage, they are human beings who deserve the best care possible!!!

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