Dementia – The Ideal and the Real

I would like to direct my readers’ attention to the comment posted by “oxigen” after my last post, “Turning Back the Clock”. 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 (https://allenpower.wordpress.com/2010/12/21/turning-back-the-clock/#comments), 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 in all 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 can provide 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 http://www.changingaging.org.

Thanks for the great post and the opportunity to explore this work in greater detail!

Advertisements
This entry was posted in Uncategorized and tagged , . Bookmark the permalink.

7 Responses to Dementia – The Ideal and the Real

  1. Denise Hyde says:

    Dr. Power and Oxigen – you both have my support. I have for years been working on implementing the Eden Alternative within an organization and supporting others trying to do the same. It is like the waltz in many ways. Sometimes you move forward, sometimes back, sometime sideways and some days you feel like you are just spinning around. My background is in pharmacy and in our home, we actually found the lowest use of medication overall with those living with dementia. It was not because of the great job we were doing with culture change, although we were trying. We had many of those organizational road blocks in our way that Dr. Power described. I believe we were successful in this area because the professional staff were not a part of daily life for the Elders. The nurses and othe professionals were a resource and support to the hands-on caregivers that were with the Elders every day. The Elders pretty much lived in their own area, which I know goes against Dr. Power’s ideas, and the number of people living in this are were small (15 Elders). I believe the smallness really makes a difference. Second, the hands-on caregivers in that area were highly trained in the skills needed to assess and help circumvent potential challenges before the need for medications became an issue. We did all we could to provide them with the skills and training they needed to be successful in creating home for the Elders. They were vehement with the nurses and doctors to allow them time to get to know the Elder better before any medications were added. There were still times when the medication was the right answer for an Elder. Lastly, we really found the right personalities to be a part of those Elders’ lives. We had someone from maintenance with a calm personality that came in mornings to read the paper and cue Elders as they ate breakfast. We had a psychologist that had a way with one Elder who hated his bath come in and be there so he was more cooperative and medications could be avoided. This took us a lot of time and discussions and commitment to get where we got and that was not very far. Once the committed leaders changed, the organization quickly reverted back to their old ways and the Elders paid the price. The journey is fragile!

    My advice is to continue to help your mother become well-known to those around her. Teach them the skills you gained from caring for her for so many years. Do not see yourself separate from the team, but a key member of the team of people that surround your mother every day. Your need to be a partner in her care does not change because her geographical location has. Lastly, be patient with the people working in your mother’s home. Give them the information they need, like Dr. Power’s book, to help them see their role differently.

    I too wish it was an ideal world and that everyone that espoused to practice person-directed care, including using the Eden Alternative, lived up to our expectations about what that means. It sure would make me more comfortable as my family members age and find themselves needing long-term care support. It still is scary, but better than it was two decades ago. I appreciate the passion you both have and maybe together we can bring others along with us to truly change Eldercare everywhere, forever!

  2. apeden10 says:

    Thanks for your wisdom, Denise. And thanks, Karen, for your great advice in the previous comment section as well.

    This is an important issue as all of us, care staff and families alike, want what’s best but can’t always get there in the environment in which we work. This is what culture change is all about.

    Please keep up the discussion, on this post or the previous!

  3. Karen Overturf says:

    I would like to see you post a thread just for comments and questions on your book, Dr. Power. I have a feeling, as more people read your work, you will get more of the questions like this that arise, and a post where they can directly ask questions relating to the words you wrote, you will be “training” many people with your answers and discussion.

    I (and many others) would keep that thread bookmarked, and reference it to other people on other blogs, as well as other questions and, in my case, my schoolwork.

  4. Karen Overturf says:

    Denise,

    I think the size will make a difference, too. I personally am thinking of a cohousing community specifically aimed to people at risk for long term care (and willing to be a part of a new paradigm). I think people will be more adapted to aging, and more able to help one another if they age with one another. When I thought about how large the initial community should be, I considered my own experience with my disability before our wonderful digital age, and decided 16 would be an optimal size for getting to know one another, and… it takes about 4 times the effort to get something done effectively when you have a disability to overcome!

    So, I am amazed at your number of 15 people.

    It may be something you and I end up working on together in the Nebraska Culture Change Coalition!

  5. Ciel says:

    Dr. Powers, what do you do with the anger and heartache caused by a nursing home/hospice team that insisted on zonking out your father with Haldol? Within days, he lost his ability to communicate and then he passed away. I want to register my concern. I’d like to help another family in the same position, one that has time to prevent this outcome. Is there a consumer protection agency to speak with?

  6. Great posting on the need for cultural change within senior communities caring for those with Alzheimer’s and other dementias. The over usage of medications to manage combative or disruptive behaviors is becoming more prevalent and there is a definite need to educate medical providers on the detriments of these practices, but as important is educating the general public to effectively raise the standard of care that should be expected for this population of the frail elderly.

    However, we are in disagreement about concentrating people within a dementia-specific living area. Although many skilled nursing facilities and assisted living communities attempt to group such residents in “dementia-wards” with sometimes unsuccessful plans for care, there are benefits to grouping people with dementia in areas where they may be close to others in the same stage of cognitive decline. Our communities have Social neighborhoods for residents in early stages of progression and Supportive neighborhoods for those in later stages; the former participate in engagement opportunities that are more cognitively challenging, while the latter participate in activities with more tactile and verbal stimulation. This program has allowed us to focus medical care where it is needed most and behavioral issues have seen a sharp decline. Residents have also become much more active in engagements, as they are catered to the specific abilities of each neighborhood.

    Thank you for your insight and passion on the subject and we commend you for promoting this kind of dialogue on improving the quality of life and care for people suffering from dementia.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s