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.
• • • • •
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!!!