Al Power tackles some critical questions from a reader regarding the care her mother, who has Alzheimer’s, is receiving at an Eden registered facility. While neither Al nor Dr. Bill Thomas (who the comments are also directed at) can respond to the specifics of a medical situation they are not personally involved in, Al responds in detail to the challenges of implementing person-centered care through the vehicle of culture change. You can read Al’s post below or comment on the Al Power Blog here.
The writer poses some very important questions about the realities of care in a world where we promote such philosophies as “Eden Alternative” and “person-directed care”. Some of the questions are directed toward me, others to Eden Founder Dr. Bill Thomas and some are just general questions for anyone who might lend insight. I will do my best to answer as many as I can within a reasonable usage of space and time. Please read the full comment here, which I elected not to cut-and-paste again here.
It’s probably best to start with the “Eden” questions. The writer is understandably frustrated that organisations that espouse a certain philosophy do not always live up to the ideals of that philosophy. This is frequently the case, but the reasons are quite complex. In the comment, facilities are referred to as “semi Eden accredited”, and I don’t know for sure what that means. There are two issues here: “Eden registration” and the “Eden journey”.
Registration with The Eden Alternative is like being pregnant–you either are or you aren’t (although an organisation can be doing preparatory steps to work toward joining the registry). However, even after joining the registry, Eden homes are on a transformational journey that is gradual, organic and truly never-ending. Therefore an Eden imprimatur does not indicate that an organisation provides perfect care in each case, but rather that they are on a path to create better lives for elders. (I will bring this around to dementia care in a few moments–hang in there…).
Unfortunately, moving from an institutional, “declinist” approach to care toward an empowered and enlightened one takes time and requires the personal transformation of each individual in the organisation, and there are many stumbling blocks along the way. The institutional model has an incredible power to try and suck you back into old ideas and old ways, and leaving this model behind is very hard work, 24/7/365.
As I have taught the lessons of my book to care partners, I have seen that they listen attentively, yet often struggle with bringing the concepts to fruition. One could simply say that they don’t care or don’t “get it”, but to do so is often what author Malcolm Gladwell would call a “fundamental attribution error”. This term refers to our tendency to blame people’s behavior on a defect of character, when often there are external factors that are primarily responsible. This happens in transforming homes of all stripes, Eden or otherwise.
Let’s bring all this around to the topics of dementia, unmet needs and psychotropic medications. My own nursing home, St. John’s in Rochester, New York, is still early on the path of operational transformation. We have given a lot of education and many, if not most employees are well on their way to embracing this new mindset. But this is a huge home with a lot of ingrained systems that pull staff members in many directions, not all of which are elder-centred (sorry Americans, but for this post, I’m spelling words in deference to our Down-Under commenter .
I don’t know the specific people involved in oxigen’s comment, but what this might mean in the context of the writer’s mother and her distress could be that the staff really do care about her and try their best, but they may be pulled in a lot of different directions by competing priorities (such as the needs of other elders and their families, the attitudes of the medical staff or other co-workers, the fear of liability or regulatory sanctions for “uncontrolled behaviors”, or just plain-old stress and burnout).
Of course, there are also likely to be individuals who still see pills to be the solution, because that’s what we are all taught, what many specialists still believe, and perhaps their thinking has not yet been challenged by my book or similar writings. (My book is available in Australia, as you probably know, so if no one at the home knows about it, you can help me out. For starters, you could buy the staff a copy for Christmas!)
None of this is meant to back down from my belief in the fallacy of our traditional practice of approaching unmet needs with potentially dangerous psychiatric medication. I stand by that strongly as ever. However, even when we know that to be the case, our ability to create a world where each person living with dementia experiences comfort and well-being may not be immediately attainable. A significant organisational transformation must occur, to enable us to align our staffing, decision-making, priorities, budgets, outcomes measures, performance reviews, even our merit raises, with a commitment to this new philosophy of care.
I agree wholeheartedly with the writer that for those of us who visualize a better future, it is extremely frustrating when organisations seem to be so slow at getting to where we need to be. But I have also worked closely with many hands-on staff who tell me quite clearly that they care deeply, but are not in a position to truly respond to people the way they need to, due to all of these other factors.
This is why my book may be the only one ever written on dementia (or one of a very few) that spends so much time explaining in detail the need for a good culture change pathway, in order to help the model of care to succeed. NO philosophy, whether it be Kitwood & Brooker, Verity & Lee, Thomas or anyone else, can survive in a living environment that has no pathway to help operationalize that philosophy.
I continue to dream of a world where psychotropic medications are the rare exception inall living environments. I reduced these medications in my own cohort of 100 people with dementia down to about 7% at St. John’s, when I last practiced full-time (compared to an average of ~40% of people with dementia in residential care facilities throughout industrialised countries). But when I tried to reduce those meds more quickly than the organisation could handle, I found that people’s needs were not being met, they became more distressed, and I had to pause my dose reductions and work on coaxing the system forward. That’s the journey of culture change.
The last comment I will make today is that I believe that a transformed environment canprovide excellent care without having 1-to-1 staffing, or even significantly higher ratios than we currently use. The operational changes of Eden create staff collaborations and cross-competencies that are more flexible in meeting individual needs than our institutional model provides. However, there may be times in the day when an individual needs a 1-on-1 approach, and the system has to have the flexibility to enable a care partner to engage a person in that way, in order to meet the needs of the moment. (Also, concentrating many such people into a dementia-specific living area exacerbates the problem, because there are more people who are likely to need such interventions on a given day.)
I am sure that I didn’t answer all the excellent questions that “oxigen” posed, but I hope that this is a start, and I hope you will continue to advocate for your mother and work collaboratively with the care home to find better solutions. I will also send this off to Bill Thomas, Carol Ende and a few folks in Oz, to see if they wish to weigh in, either here or at www.changingaging.org.
Thanks for the great post and the opportunity to explore this work in greater detail!