The Importance of Rhythms for Dementia Patients in Eliminating “Sundowners” and Other “Behaviors”

By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester

I recently had the pleasure of visiting with an elder who experiences frequent distress in the late afternoon. I was immediately struck by the connection of her anxiety and desire to leave with a lot of change-of-shift activity. This leads me to suggest a larger discussion about the whole concept of what we call “sundowning”.

More and more, I have come to see the term “sundowning” as a classic example of what Dr. Tom Kitwood called positioning, meaning that we blame the distress on the disease, rather than looking for other factors. Consider this scenario:

Whenever I teach a 3-day Eden course, I can guarantee that around 2-3 PM, some of the people in the class will get up, walk around a bit or stand in the back for a while. They are usually nurses and CNAs. Are they sundowning? Agitated? Of course not.

Most day shift nurses and CNAs work from 6 or 7 AM till 2:30 or 3:30, and they are on their feet a lot. But I take them and shift their workday to an 8-5 schedule and make them sit most of the day. I force people into a rhythm that is different from their usual pattern, and by mid-afternoon, their bodies start to rebel.

I suppose I could shift the class to 6a – 3p and create more opportunities for walking around, but instead I schedule it around my own work needs and I usually get so caught up in the process that I don’t think to get people moving around more. Does any of this sound familiar? Welcome to long-term care.

I am going to suggest an alternate idea, which many of you may find a bit challenging to accept at first:  Dementia does not cause “sundowning”. We do!  Dementia simply “fans the flames” by making people (1) more sensitive to their environment, (2) more easily fatigued, and (3) less able to cope with having their biorhythms shifted into artificial schedules that better suit our nursing home operations.

This is a small distinction, but a very important one. Here’s why: We cannot cure dementia, but we can cure almost all cases of “sundowning” without medication, by shifting operational patterns and staff behavior.

Still not convinced? By happy coincidence, my friend Ann Wyatt of the NYC Alzheimer’s Association just sent me an email of their latest newsletter. This issue tells the story of how Beatitudes, a care home in Phoenix, shifted operations and staff behavior, and created a “rest as needed” policy on their dementia-specific living areas. They have been virtually “sundown-free” for 14 years and have eliminated almost all of their psychotropic medications as well!

I would encourage you to share this information with your teams and begin to look at how we might be able to create a more natural experience that honors the individual rhythms of our elders. This is powerful stuff, and a great example of how culture change improves not only quality of life, but clinical care as well.

February 13, 2012. Tags: , , , , , , , , , . Culture Change, Eldercare, Person-Centered Care. 2 comments.

Life can be awful. Now it has gotten worse! (Paraphrase of Woody Allen’s words and view of life)

By Richard Taylor, Ph.D., Former psychologist, author, “Alzheimer’s From the Inside Out”

Editor’s Note: This blog was written on January 16, 2012

On Watching and Hearing the Wisdom of the new Federal Committee to write a plan to plan to write a plan (now to write a draft of a plan to plan to write a plan) of how the Federal Government should lead/fund/create the efforts of a few to “create a world without Alzheimer’s on or just before or after January 1, 2025”…

I spent the last few days watching the self-anointed leaders of the Alzheimer’s crisis take a step backwards from their own promise (a plan to write a plan) and produce a framework of a plan to write a plan). And then spend a day telling each other the framework is not enough.

Finally I had to turn it off. Enough was/is enough. I commit to spend the remainder of my public life pointing out the fallacies, half-truths, myths and stigmas these folks are creating and reinforcing out of one side of their mouths, while out of the other side comes their promise to undo what they persist in creating. Of course they can still suck through a straw in the middle of their mouths your support, donations and prayers. And they can occasionally burp out a false hope or two every so often. We cannot let these foxes be the spokespersons for us. We cannot let them spend all our money on bench/cure research and relatively little on psychosocial research. We cannot let them decide for us who should the focus of their efforts and who can be ignored. It’s time for the chickens to stand up and crow, to walk around a pick/peck, to be seen and heard.

Myths, half-truths, lies and hoaxes are what we use as stand-ins to avoid thinking about specific individuals. True, we demonize some while we lionize others. We take pity on some and worship others. Yet everyone is someone, distinctly different and fundamentally alike as you and I. But it is easier, safer to think of classes of human beings – by sex, race, ethnicity, disease groups, etc.

If we continue to buy the lie that Alzheimer’s Disease is the sole cause of a public health crisis we are dooming more than another generation to feel “left out” of the dementia discussion, of the dementia research, of the dementia support (such as it is) provided by organizations and governments.

This is wrong, wrong, wrong.

If we continue to believe the hoaxes, half-truths and myths promoted by organizations and researchers that all that is needed is 13 more years, lots and lots more money and a committee or two to watch over the assured progress, we are dooming the rest of the dementia community to a life much emptier of quality, meaning and joy while we wait for the clouds to part and the cure pill to come tumbling down by January 1, 2025.

This is wrong, wrong, wrong.

What are we goanna do for/about the increasingly bad state of life for the 10 million Americans now living with some form of dementia and the 20 plus million more of those who struggle to care for them? What are the research priorities? Finding answers to today’s human problems, or making up a date when there will no longer be tomorrow’s problems?

Let us stop watching this happen. There is no plan, there is no science, and there is no growing consensus outside of a relatively small group of researchers, to find a cure on or near January 1, 2025.

Let us stand up and speak out. These emperors of Alzheimer’s are not the leaders who will address the dementia public health crisis. These emperors stand naked from their own inability to solve this 30-year-old crisis. They stand naked together and lacking little to no support from their scientific colleagues most of whom admit we are not even close to understanding Alzheimer’s/Dementia. Remember the findings of the NIH just last year? http://www.nih.gov/news/health/apr2011/nia-19.htm

Now comes a committee of the one eye (bench research) to proclaim “war on Alzheimer’s.” They even tell us the date the war will be over, if only we sacrifice the quality of life of those currently with it, so we can concentrate our energy, donations, money and prayers for finding a cure so no one else will ever get it.

This is wrong, wrong, wrong.

They are declaring war, to the neglect of those whose name they want us to fight/donate for. This war, as most wars, comes down to power, influence, fame and money. Though pure of motive in most of their minds and hearts, they have simply come to believe their own hoaxes, lies, half-truths and stigmas. These in their twisted minds justify the war. They justify neglecting those in whose name the war is fought and write them off as collateral and relatively inexpensive casualties. This war is about opening up nursing home beds, saving Medicare, reducing the federal deficit. For these are the reasons/evidence they advance to justify the war. And, yes, there are occasional warnings of “this could happen to you if you don’t do and support what we ask/need. And who is the enemy? What is the enemy? Dementia? Alzheimer’s Disease? Stigmas and hoaxes? The symptoms of the poor, suffering, soulless, dying twice, barely human beings who are living with the symptoms? Those who care for or watch their loved ones slip away and are over-burdened in not knowing how to bring quality of life to those with the disease?

Be careful not to wound them while you shoot at their symptoms. Be careful not to demonize them with your neglect of their humanity, your weapons of war which may or may not slow down, reverse, eliminate and/or destroy the symptoms – but then again the last 15 weapons (pills) we have developed have all failed, leaving broken hearts, broken half promises, crushed hopes in the minds and hearts of care partners and their loved ones.

Please, please – for your own sake, the sake of your family, and the rest of the world – stand up and speak out. We are quickly falling further and further behind in the race they created to capture the hearts, minds and money of politicians and citizens. They first redefine the dementia crises with the words “The Alzheimer’s Crises.” And then they convinced others with power that they are suddenly smart enough to this time for sure truly claim the cure is just 13 years away with absolute certainty.

We all whispered to each other about how wrong this was. Wrote blogs, created petitions, made presentations to each other, fired off an occasional broad side via emails, and then we all went to bed. They have stayed up all night, running focus groups, reinforcing fears and stigmas, lobbying for 20 years for something that was “soon to come, light at the end of the tunnel, supported by breakthroughs. Claiming, now they know what to do, how to do it, they just lack a few pennies to support their efforts.

Now they spread false hopes, reinforce stigmas, state wishes as facts – all while under the all-knowing eyes of the Executive and Legislative branches of our government.

What is each of us going to do about out this? What are some of us going to do about this? What should all of us do about this?

You decide. I have.

Richard
richardtaylorphd@gmail.com

 

ANNOUNCING THE LAUNCH OF…”I Can and I Will!”
www.alz.co.uk/icaniwill

Another way for you to stand up and speak out.

A way to benefit from the collective life experiences of kindred spirits living around our world with Alzheimer’s and other forms of dementia.

And a way to say “I CAN! I WILL!” to raising awareness about dementia, addressing the myths and stigmas that accompany a diagnosis of dementia, and enabling people living with dementia to be more open with others about their disability.

With support both financially and organizationally from Alzheimer’s Disease International (ADI), the I CAN! I WILL! Stand Up and Speak About Dementia project and website has moved from dream to reality to become a unique information resource about dementia and the people who live with it, a place where people from all walks of life and from all countries can share their experiences with dementia and find hope and inspiration.

The goal of the I CAN! I WILL! website is to become an “idea library” of hundreds of ideas. By reading the ideas posted on the website — AND by contributing their own thoughts — people with dementia, care partners, medical professionals, Alzheimer’s society/association members and others can say “I CAN!” and “I WILL!” to ideas that can impact their own lives, families and communities, and potentially, the world.


January 27, 2012. Tags: , , , , . Eldercare, Person-Centered Care. Leave a comment.

Choice vs. Consent

By Kathy McCollett, Organizational Culture Change Specialist, PHI

Let me start by saying that there is a huge difference between consenting to do something and choosing to do something. When health care professionals use the phrase “informed consent,” it generally means that after receiving information and advice, the nursing home resident is agreeing to do what the healthcare professionalwould like them to do. In all fairness to the person requesting the consent, their request is likely based on years of experience and perhaps evidence-based practices. The requestor may feel that his or her perspective on the issue is as solid as the rock of Gibraltar, and therefore,if the resident does not agree, there is now a problem that needs to be fixed. The resident, and sometimes their family members, has taken a stance that feels oppositional, even adversarial, and that does not comport with “industry standards.”

Initially, the healthcare professional may feel that the resident doesn’t have enough information to make an agreeable decision. So, logically, more information is provided. Sometimes these conversations allow for collaborative problem-solving and all parties come to an amicable agreement. But sometimes, the resident–or their family–simply does not agree or chooses not to consent to a particular treatment, procedure, or protocol. If the healthcare worker has done a reasonable job of explaining why the doctor, nurse or nursing home holds their particular point of view, then it is documented in the resident’s chart that the resident has been “educated” in relation to the issue under discussion.

But that is not usually the end of the matter. In an effort to get the resident to ultimately consent, the healthcare professional may be acting on a number of assumptions. They may be thinking that if the resident doesn’t agree, or consent, he or she isn’t thinking clearly. If the resident is vehement about it, it could be concluded that the individual is irrational, or perhaps having cognitive difficulties. The healthcare professional may think, “Maybe someone else could talk to the resident, someone the individual would listen to, someone who could get the resident to agree.” All of this is usually with the best of intentions.

For instance, a caregiver who is assigned to care for a woman who has had cardiac surgery comes in to ask the resident to come to the dining room for breakfast. The resident explains that she does not want to go to the dining room, but would like to have a small breakfast in bed. The caregiver will bring her breakfast from the choices associated with her particular diagnosis or from a tray prepared by the dietary department. The caregiver must be sure to bring food that follows any therapeutic diet and associated restrictions—including thickened liquids–that have been designated by the physician.

When the caregiver brings the tray to the resident, she sees scrambled eggs, limp toast, ground sausage, a bowl of oatmeal, orange juice and coffee.  The individual says that she just wants a piece of toast with butter and jam and some coffee. The caregiver tells her that she needs to eat so that she has the nutrition she’ll need “to get better, so she can go home.” The resident feels that no one is listening to her. She says that what everyone wants for her is taking precedence over what she wants for herself.

The resident, however, has the right to choose what she wants for breakfast as well as the portion size. By not eating what has been recommended, the nursing staff may indicate that the resident is refusing her breakfast when, in fact, she is eating what she would normally have if she were at home. At the  interdisciplinary team meeting, there may be a discussion about her unwillingness to comply, or consent to what the healthcare professionals deem as essential to her care plan. It is entirely possible that there could be a recommendation that she have a psychological evaluation to determine if she is depressed. This may be perfectly appropriate, but it may be a reaction to the fact that the resident doesn’t want to do what the healthcare professional wants her to do.

These situations exist many times over in nursing homes across America, not only around mealtimes, but with everything from administering medications to attending activities. Decisions are made for the individual being admitted prior to their coming, while they are there, and even for the time after they go home. This writer is not advocating for relinquishing or diminishing the responsibility of the healthcare professionals to inform, educate, encourage, and assess the needs and goals of the residents in any way. The care and support needed and wanted by residents in nursing homes should be determined through a collaborative process between the home and the resident and their family members (when this is appropriate). This process should result in a resident-directed approach to each person’s stay. Ultimately, it is the resident or the person designated to make decisions for them, who has the final choice in any matter. Hopefully, that will be a fully informed choice.

January 6, 2012. Tags: , , , , , . Culture Change, Eldercare, Long-Term Care, Person-Centered Care, Uncategorized. 2 comments.

Day 20: Who’s the Boss? Providing Person-Centered Care and Caring

By Bonnie Kantor-Burman, Sc.D., Director, Ohio Department of Aging

Editor’s Note: This blog was originally posted November 30 to the Family Caregiver Alliance’s “30 Days of Caregiving” blog 

My mother was cared for by a wonderful woman, Darlene, during the time she needed long-term care and caring. One day, I asked Darlene if my mother could go somewhere with me—I don’t remember where, but it really doesn’t matter. What matters is the quizzical and rather piercing look I received from Darlene. Thinking that maybe she didn’t hear me clearly, I repeated my query. This time she responded not only with words, but with her arms flailing wildly for emphasis. “Why you are asking me?” she replied. “Your mother is the boss, not me.” And then, with a finger pointing my way she continued, “For heaven’s sake, ask her, not me.” Point well-taken indeed, and clearly never forgotten.

More and more states continue to “rebalance” their provision of long term care, focusing their efforts squarely on moving some of the care from more nursing homes to home- and community-based settings. This, of course, is not only more cost effective, but is what most folks tell us they want. Here in Ohio, our approach to rebalancing is multidimensional. In additional to shifting the balance back to providing more care in the home, we are also focusing on the message Darlene sent to me loud and clear. We are concentrating not only on where the care is delivered but also how, by whom and when. Think about it: If we are getting up on someone else’s schedule, going to bed when they decide and eating the food they think best for us at the hour they determine, are we really “home?” Or are we living in a house that used to be our home? In other words, who is in charge—or to paraphrase Darlene, “Who’s the boss?” After all, aren’t we the boss in our own homes? Don’t we make our own decisions whenever possible? And don’t we have real relationships with the people there?

Care in which the person needing the support is living as normal a life as possible and making as many of her own decisions as possible (regardless of whether the care is provided by family and friends or formal care from paid caregivers) is best described as person-centered care. It is the kind of care each of us would want for ourselves and for our loved ones. While there are many different approaches to person-centered care, the core values that unite them are choice, dignity, respect and self-determination. Person-centered care always is characterized by individual choice in schedule and relationship. To achieve this, formal and informal providers adjust their care and routines to the needs of the care recipient instead of the other way around. So, instead of being reassured that, “Mom is adjusting well,” in a person-centered care situation, a daughter will hear, “We are adjusting well to your mom.”

Perhaps a former care recipient said it best when she commented, “You haven’t lived ’til you’ve gone to the bathroom on someone else’s schedule.”

I would be remiss if I didn’t add that research suggests that everyone benefits from person-centered care. Health and functional outcomes are better, costs are lower and both providers and consumers are more satisfied. Sounds like a win-win-win situation to me!

Person-centered care certainly worked for our family. My mother, “the boss,” lived for a full six years being cared for and cared about by Darlene. She lived a full six years being loved by Darlene. In her own way, she loved Darlene right back. Isn’t this the kind of care and caring we want for all of our elders? Who’s the boss in your caregiving situation?

Resources

1) Ohio Department of Aging Web site: www.aging.ohio.gov
2) Ohio Department of Aging on Facebook
3) Ohio Department of Aging on Twitter

Day 20: Who’s the Boss? Providing Person-centered Care and Caring by By Bonnie Kantor-Burman, Director, Ohio Department of Aging is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.

December 12, 2011. Tags: , , , , , , , , , , , , . Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care, Uncategorized. 1 comment.

We Are Not the Alzheimer’s Generation!

By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester

As many of you know, the national Alzheimer’s Association leadership has labeled the Baby Boomers “Generation Alzheimer’s”. As one who is planted firmly in the center of that cohort, it’s time I responded to that characterization.

The reason we are felt to be the Alzheimer’s Generation is because when the Baby Boomers reach their 70s and 80s, there will be more people living with Alzheimer’s and other dementias than our country has ever seen.

This is true, and there is a simple reason why: Because there will be more 70- and 80-year olds than the country has ever seen!

It’s a matter of numbers – there are over 70 million of us. So have you figured out that as of that same date, there will also be more  70- and 80-year olds with healthy brains than the country has ever seen? More 70- and 80-year old CEOs, performers, writers and marathon runners? So why aren’t people calling us the “Healthy Brain Generation”??

Those same aging demographics will likely make us the Heart Attack Generation, the Cancer Generation, the Stroke Generation and even the Polymyalgia Rheumatica Generation as well (though probably not the Diabetes Generation, as the current childhood obesity epidemic looks to outpace us there).

I do not deny that the number of people living with dementia is rapidly growing. But as I recently heard a politician remark: “Statistics are like lampposts–many people use them more for support than for illumination.” It is time to stop scaring people and start illuminating them.

Besides being alarmist, there are two other problems with this label. The first is that it is profoundly ageist. Basically, this is one more example of an emerging group of older Americans being demonized as an approaching plague and a burden on our society.

In my own journey to better understand the spectrum of forgetfulness and cognitive disability, I have found that the only true dementia experts are those who have lived with the diagnosis. With all due respect to my former professors of neurology and psychiatry, I have learned more from Richard Taylor, Christine Bryden and the hundreds of people I have cared for over the years than from all of my scholarly training. What I have learned is that these true experts have much to teach us about the experience of dementia, which will in turn lead to remarkable new ways to provide optimal care and support.

Based on this, one could also say that the aging Baby Boomers will bring an unprecedented amount of wisdom to us about the experience of dementia, thus exponentially increasing our own knowledge and skills (if we can get beyond the stigmatization and partner with them).

Kudos to the folks at the University of Waterloo, Ontario, Canada. Doctoral candidate Jennifer Carson has recently shared with me the work she is doing with Dr. Sherry Dupuis and others to move beyond our often-paternalistic view of “person-centered care” and promote authentic partnerships between people living with dementia and their care partners. They have designed a model and a toolkit to help people create such partnerships, in which the person living with dementia is actively involved in daily decisions and planning. Why aren’t efforts like these placed front-and-center at our dementia symposia, instead of one more talk on the structure of the tau protein?

My last issue with the “Alzheimer’s Generation” label is that a closer examination of that concept reveals a basic contradiction with the association’s stated goal of creating ” a world without Alzheimer’s”. Consider the implications of our generation being labeled as such and ask yourself: Why will the aging Boomers produce an unprecedented number of people living with dementia? Is it because we are uniquely susceptible to some mosquito-borne dementia virus? Because we don’t eat as well as other generations? Because we inhaled a bit too much Agent Orange or dropped a little LSD during our youth?

No, the reason is simply because our cohort will be entering old age–the time when dementia becomes most prevalent. This focus highlights the very fact that dementia is, by and large, a condition intimately related to aging of the body and brain. Therefore, it seems clear that it will be very difficult to create a world without dementia, unless we create a world without old people. Soylent Green, anyone?

Enough complaining. Here is how I would frame the coming dementia “boom”: The aging of our population and all the attendant conditions associated with advanced age are a reminder that our world is changing irrevocably. Just as with the arrival of the automobile or the internet, we need a paradigm shift. We are challenged to examine the way our society functions and to re-imagine what will be needed to ensure a healthy future society. In this case, we must radically change our view of dementia and the systems of care we have created, as our current approach does not work and will not sustain us in the years to come. We also need to re-integrate elders, with and without dementia, into the fabric of our society–not as passive recipients of care, but through the kind of authentic partnerships that pioneers like the Waterloo group have put forward.

This will require some hard work and there is no time to lose. Where to begin? Well, for a start, you could ask a couple of Baby Boomers for their thoughts. After all, the numbers clearly show that we will be the “Old People with New Ideas Generation”!

October 14, 2011. Tags: , , , , , , , . Culture Change, Eldercare, Person-Centered Care. 1 comment.

Meaningful Activity: Involving Residents in the Planning of the Daily Routine

By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC

It’s been some time since I originally addressed the subject of meaningful activity.  Over the past few years this aspect of resident care has taken on a new significance both with regard to regulatory oversight and customer expectations.  Moreover, meaningful activity programming has become a primary component of behavior management care planning.  With the introduction of the Quality Indicator Survey (QIS) and the MDS 3.0, resident satisfaction, particularly with the daily routine and quality of life, are paramount to the facility’s compliance and reputation.

In the first installment on this subject, I talked about the nature of “meaningful.”  I believe that daily activities are so much more than just doing a particular task or attending an event.  There is so much that goes into planning our daily routines that nursing home activity programmers overlook: conceptualizing something that you want to do or accomplish, planning for the activity, deciding on the things you need and developing a budget, acquiring supplies or arranging transit, inviting others to join in, deciding what to wear, and all of the other details that lead up to the actual act of doing something or going somewhere.

There can be no quality of life without a meaningful existence.  As adults, as parents, as workers, our daily routine centers on those things that are most important in our lives.  We think about and manage many responsibilities simultaneously each day.  We take care of our very existence: paying bills, managing a household, providing for those who depend on us.  We take care of obligations: care for children, care for pets, make household repairs, mow the lawn, do laundry, shop, and take care of the car.

There are a number of ways to bring some of these aspects of meaningfulness into the lives of your residents through the activity program.  Through the assessment and interview process, you will be able to not only get closer to what is meaningful for each individual, but also gain a sense of how the daily nursing home routine should be revised to allow residents greater opportunity to be involved in deciding on what that routine should be.

As facilities have become more competitive, the admissions process has been accelerated to the extent that we often know very little about the person being admitted.  The history that accompanies most new admissions is medically focused and sparse in terms of social routines and preferences.  In some cases, important psychosocial history information (i.e. a history of psychiatric illness) and information about occupational or civic pursuits and routines is also missing.

The first step to understanding what is meaningful to someone is to obtain a snapshot of who the person is, his/her ego and personality, occupational and civic identities, and preferences and daily routines.  This information may not be immediately available, but can be obtained over time and shared with the clinical team to facilitate the development of resident-centered care plans.

Once you have learned more about what makes the individual tick, or what he/she was like before the onset of cognitive deficits or other disabilities that complicate his/her expression of routines and preferences, the team can begin to create a meaningful daily routine. By offering residents the opportunity to work with the activity programmers on conceptualizing, planning, organizing and executing events and activities, a great deal will have been accomplished toward the goal of creating a meaningful existence for your residents.  Here are a few suggestions that reach beyond the standard Residents’ Council opportunities:

For residents who do not suffer cognitive impairment:

  1. Program Planning Committee:  offering residents the opportunity to work collaboratively with the activity staff to develop and execute the monthly calendar.  This committee can address many aspects of program planning, including: selecting entertainers and locations for field trips; canvassing other residents to help develop the daily activity offerings; researching and selecting appropriate recipes for refreshments or full meals that may be part of the program and developing a budget; planning holiday events and deciding on special meal items to be included (in some cases, capturing a specific family or ethnic recipe to include); and helping to create invitations, develop seating arrangements, and participate in welcoming and hosting the events.
  2. Quality of Life Committee:  offering residents the opportunity to work collaboratively with executive staff on analyzing and developing daily ADL routines. Such work might include: canvassing other residents relative to their satisfaction with meal and bathing schedules; helping executive and direct care staff to better understand and be able to accommodate residents’ requests for changes in the daily routine; working with executive staff on facility improvement projects, including those addressing décor, the dining experience, bathing environments, and other areas of the facility impacting resident satisfaction and feelings of comfort and “homelike”.
  3. Community Outreach Committee:  offering residents the opportunity to remain connected to community organizations and events.  This committee may work to host monthly meetings of community organizations such as the VFW, Women’s Club, Rotary, etc. Residents would then have the opportunity to continue previous routines of membership and community activism.
  4. Tutoring Services:many residents possess the knowledge, skills, and life experience to be a great asset to local students.  Initiating a tutoring service would help residents regain a sense of purpose, keep them connected to the larger community, and go a long way to debunking the stereotype of the feeble, old person who lives in a nursing home. This approach would also foster new friendships.

For residents with cognitive impairment:

Residents with cognitive impairment are often unable to learn or participate in new things.  For these reasons, the assessment of civic and occupational roles, and routines and preferences will be paramount to finding what might be “meaningful” to the person who is a mere shadow of their former selves.  This is an excellent reason to begin journaling activities in which the staff records memories as they’re recalled and shared by the resident over time.  Journaling is a wonderful way to begin to “know” the resident in ways that may be lost in an interview.

The most successful activity interventions for residents with cognitive impairment are those that are, 1) easily recognized by the resident, 2) based in occupational, social or domestic activity, 3) modified appropriately for the resident’s current level of function, and 4) revised in tandem with any further deterioration.  Simulated domestic or occupational tasks will generally engage the resident for the period of time he/she continues to relate to that previous role.

Adaptations of domestic and occupational activity should always include dialogue with the resident about the task or event and why he/she finds it important. Therein will be the essence of meaningful, with the resident able to explain and identify with the purpose of the task, as well as achieve a sense of personal satisfaction from being able to complete the task or participate in the event successfully.

It is important to remember that residents in the moderate to early-late stage dementia are still capable of expressing wants, needs, and ideas if given the time and patience to express themselves.  Too often direct care staff fails to give cognitively impaired residents adequate opportunity to respond.  Engaging cognitively impaired residents in extended conversation will promote better attention and ability to respond in greater detail.

ADL Activity:

Lastly, domestic activity on a broad scale can be the normalizing aspect of the daily routine.  Allowing residents to help prepare for meals by setting the table can go a long way to making it a more meaningful experience.  Most adults acknowledge that a good portion of their own daily routines involve domestic and ADL tasks, making it reasonable to assume that residents would most likely find purpose in these same activities.

Activity and recreation professionals are encouraged to move away from large group activities in favor of smaller, more individualized activity groups.  Combining a revised program calendar with enhanced opportunities to engage in the aspects of programming that involve conceptualizing, planning, creating and hosting will increase resident interest and satisfaction.  Creating a meaningful existence is the most crucial step toward creating true quality of life for every resident served.

©2011

September 8, 2011. Tags: , , , , , , , , , , . Assisted Living, Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care. 1 comment.

Normal Is a Relative Term – An Excerpt From “Alzheimer’s From the Inside Out”

By Richard Taylor, Ph.D., Former psychologist, author, “Alzheimer’s From the Inside Out”

Editor’s Note: This blog is the first blog of a two-part series, featuring excerpts of the book “Alzheimer’s From the Inside Out” by Richard Taylor, Ph.D. Taylor is a former psychologist who was diagnosed with dementia seven years ago and now travels the world to speak about life with Alzheimer’s.

Of course I realize that normal is a relative term, but I try harder and harder every day to outwardly appear normal.

One day, I did accompany someone to the store, and it felt wonderful to be able to walk up and down the aisles and buy things based on impulse.

I, like most human beings, am very good at hiding my thoughts but not so good at hiding my feelings. So in spite of what your neuropsychological testing may tell you, the first outward sign of the disease is probably revealed through your feelings.

I want psychologists to open their own minds beyond what they learned in graduate school and attempt to see me not through the eyes of someone who died years ago, but as someone who is marching not only to a different drummer but down a different road than most all their other clients.

I have a large vocabulary, a loud voice, and a Ph.D.—a great combination if one is trying to hide one’s early-onset Alzheimer’s disease.

I feel that people would rather disable me than enable me to be all that I can be. I feel lonely. I feel less attached to my family. Is it me or is it them?

The trust relationship between husband and wife, father and son, grandfather and grandchild is breaking—not because we do not love each other as much as in the past; in fact, now our love and our connection is even more then it used to be.

I don’t know why it embarrasses me when others act differently around me. I’m the one with the extra dead brain cells.

Please accentuate the positive with my recollections. Don’t lie if I’m not accurate, but don’t try to make me remember exactly as you do.

Would a dictionary resolve our misunderstandings? Would a tape recorder resolve our lack of clear communication? No!

Many times, she must guess when I need help and when I don’t. Asking for help does not come easy for me. If she guesses wrong, I am not pleased. If she guesses right, I sometimes take it for granted.

Obviously, there are no “right answers” and no “right ways.” Most families, like ours, keep trying until we get it approximately right and hope we have not alienated each other in the process.

My relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together. We talk more, we hug more, we cry more, we laugh more and harder and longer together.

Is it my own vanity or shame, or fear or low self-esteem that keeps me from asking for prompts or help?

“And, oh, by the way, stop feeling so paranoid; everyone is not out to get you.”

When I was first diagnosed with the disease, every time I got out of bed my spouse would inquire, “Where are you going?” I would tell her that I was going to wander naked around the neighborhood. We would both laugh, and she would fall back asleep. (Now, since I have actually started to occasionally wander, we don’t laugh about it any more)

I am not a child. Even if sometimes I act like one, check me out—I AM NOT A CHILD!” (An adult acting like a child-is still an adult.)

April 6, 2011. Tags: , , , , , . Culture Change, Eldercare. 1 comment.

Passion, Inspiration, Reality and Possibility

By Wendy Vaughn, BS Ed., BA, AAS, Eden Alternative® Educator and Mentor, Eden Ambassador and Administrator In Training

The first place culture change begins is within ourselves–in our own hearts and minds. Our budding, personal passion becomes the catalyst for changing the world, right from our own eldercare organizations.

Essentially, our zeal for doing what’s right and good for humanity propels us into becoming gardeners of people. But while we want others to “catch the fire from us,” it’s important to remember that not all who dare to cross our path will experience a light bulb moment at that instant. Fruitful gardens take time to grow. Cultivating, planting, watering, fertilizing, thinning, weeding, climate and commitment are acts and factors that influence yield. However, the gardener’s attitude and demeanor while tending the plot control the rate of growth. Practicing patience, humility and forgiveness while growing our gardens helps to hone our focus and enable us to exude an aura of unconditional love for our fellow human beings.

In our efforts to bring people together to “see the light,” many times we are met head-on with a societal phenomenon known as “rugged individualism,” that has historically been on the rise. Since the time of Andrew Jackson, “rugged individualism” has been rampantly cementing its place in the American character.  Embedded in the philosophy of culture change is the directive to move from an over-developed focus on self—ME, to an interdependent, caring community of many–WE. It’s as though we find ourselves immersed in an epic struggle of “good vs. evil.” Indeed the journey is long and difficult, but not impossible.  Everyday I live and work in the proof of the truth that culture change works.

As we selflessly, tirelessly inspire and empower others to catch the fire of change, we must maintain a realistic vision along the way so we don’t drive ourselves to the brink of insanity in our quest for a new, occasionally ethereal or utopian, way of life. We can muster “ideals” but there are no perfect people, no perfect places, no perfect things.

Dr. Jean Vanier, founder of l’Arche, expounds in, Community and Growth, “It is difficult to get people to understand that the ideal doesn’t exist, that personal equilibrium and the harmony they dream of come only after years and years of struggle, and even then only as flashes of grace and peace. If we are always looking for our own equilibrium—I’d even say if we are looking too much for our own peace—we will never find it, because peace is the fruit of love and service to each other . . . There is no ideal community. Community is made up of people with all their richness, but also with their weakness and their poverty, of people who accept and forgive each other, who are vulnerable one to another. Humility and trust are more at the foundation of community life than perfection and generosity.”

The power to initiate change exists within each and every one of us. That power strengthens when we call others together to do what’s right and good and we build our relationships with them. All initiatives of transformation sit upon the bedrock foundation interpersonal relationships. Teams, committees and/or groups of committed individuals drive the process of transformation and move the journey into the future. Through the dynamics of teamwork, hearts and minds are touched and transformed, a social fabric is woven, and strength, courage and unity emerge.

The power to change the world brews in small groups of individuals who transform our once institutional eldercare organizations into fertile grounds of true, caring communities–communities that believe in the value of human life and promote growth and development in the lives and spirits of all who live, work and visit there. Marked transformation is possible when our gardens of empowered people are afforded time, education, patience and loving support. When love enters our relationships, the fertile grounds of culture change become hallowed.

What’s your passion?

February 24, 2011. Tags: , , , , , , . Culture Change, Eldercare, Person-Centered Care. 1 comment.

The New York Times Weighs in on Consistent Assignments

By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester

(Editor’s Note: Dr. Power gave permission to repost this blog originally posted Dec. 13 at http://allenpower.wordpress.com/2010/12/13/ny-times-weighs-in-on-consistent-assigments/)

 

 

Thanks to Steve LeMoine for pointing out an article from today’s paper on the importance of consistent assignments for improved quality of care and quality of life in nursing homes. Here’s the link to the article: Getting to Know You

The article also has a link to a PDF for consumers on consistent assignments. Here it is (from Mary Jane Koren and the Nursing Home Quality Campaign):

 

FAST FACTS: Consistent Assignment
Advancing Excellence in America’s Nursing Homes is a national campaign to improve the quality of care and life for the country’s 1.5 million people receiving care in nursing homes. Nursing homes, their staff and consumers can join in this effort by working on the campaign goals, designed to improve quality. This consumer fact sheet explains why it is important for residents to get the same caregivers most of the time.

What does consistent assignment mean?
Consistent assignment means that residents see the same caregivers (registered nurse, licensed practical nurse or certified nursing assistant) almost every time they are on duty. Many residents are more comfortable with caregivers who know and understand their personal preferences and needs. Consistent assignment is primary assignment.

What should you know about consistent assignment?
Consistent assignment is a key step in giving care that is centered on the resident. It builds strong relationships between residents and staff, which are central to better care. A nursing home adopts consistent assignment to strengthen relationships between individual residents, their families, friends and the caregivers. Staff who take care of the same residents are happier in their jobs and tend to stay in their jobs.

How does consistent assignment benefit residents?

  • Residents don’t have to explain to new staff how to care for them day after day.
  • Residents feel more comfortable with the intimate aspects of care.
  • Residents feel more secure with caregivers they know.
  • Residents with dementia are much more comfortable with familiar caregivers.
  • Residents and their families develop relationships with staff over time.

How does consistent assignment benefit caregivers?

  • Caregivers know what each resident wants and needs. They can give   individualized care and are more organized in their work.
  • Nurses and nursing assistants who work with the same residents most of the time are more likely to notice slight changes in health. This can prevent more serious health problems in the future.
  • Caregivers are more likely to understand and respond to the behaviors of residents with dementia. This is important because residents with this condition often let others know what they want and need through their actions.
  • Staff members prefer consistent assignment as it lets them better connect to a resident they care for.

February 4, 2011. Tags: , , , , , , , . Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care. Leave a comment.

Another Year Over, A New One Begun

By Rhonda Rotterman, Executive Director of WNYAPCC

So this is Christmas
And what have you done
Another year over
And a new one just begun
 – John Lennon

It is hard to believe that another year is coming to a close.

As I reflect on what I have accomplished both personally and professionally I feel content, proud and fulfilled.  The Alliance has trained well over 300 care partners from 18 organizations across the eight counties of WNY. I have had the wonderful opportunity of sharing our news at two national conferences, several speaking engagements for associations, universities, insurers and professional forums, and conducted three webinars, one of which was available nationally.

We have been networking with the Department of Health regulators to bring person-centered care to a more forward-thinking philosophy with concrete applications using the new federal guidance that went into effect in June 2009. I am currently reviewing the certified nursing assistant curricula to include aspects of person-centered care and we have offered LEAP (Mather Lifeways), Leadership Change Management Strategies and Certified Eden Associate trainings.

The Buffalo News and Niagara Gazette did front page stories about person-centered care and the Alliance initiatives this year and our web site/blog is better than ever and full of resources after a complete facelift.  We continue to collaborate with the Pioneer Network, The Eden Alternative and other state coalitions to stay on top of regulatory changes and best practices. And of course we held a HUGE conference in March (Home is Where the Heart Is) that hosted six fabulous experts in culture change before 167 attendees.

In 2011 we will heighten our focus on assisting care partners with operational change and will begin to measure data and outcomes in how person-centered care affects the various aspects of operations including quality indicators, satisfaction, choice and MDS data.  These statistics will include elders, care partners and families. In addition, we are very excited about focusing on dementia person-centered care strategies and dementia care mapping in partnership with a group called Jentle Harts based out of Indianapolis.  We will train care partners how to approach, care for and include the elders in decision-making as a means to reduce behavioral manifestations, isolation, out-pacing and helplessness. Ultimately we empower staff to respond and react differently to reduce or eliminate the former.   When care partners feel empowered and are better able to care for this unique population, family satisfaction improves.

We are planning a Medical Forum Feb. 10 from 8am-12pm at Niagara University to include hospital executives, medical directors, insurance executives, and educators from universities and colleges as a means of spreading the person-centered care initiative to education and medical communities as well as the community at large.

Am I excited about what we’ve accomplished thus far? Absolutely. Am I ambitious in what we are about to embark upon? It will be a lot of hard work… but with enthusiasm and passion I know we will do great things in 2011.

I am so impressed with what communities have done by way of operational change already.  The support from this region has been wonderful and the leadership superior.  So what would I ask Santa Claus for Christmas this year? I could certainly break into renditions of  “Happy Christmas” or “Imagine” by John Lennon while reciting my desires. A bit corny, probably, so I will close with what I have learned — along with our 300 care partners — in 2010.

Together, we have learned that some of the most difficult individuals are the most vulnerable and we need to nurture, not shun them. In the words of my friend Dr. Al Power, “behavior has meaning” and it is up to us to figure out what elders are trying to tell us. We’ve also learned that language drives practice (again it comes down to choice) and that relationships are essential to human growth and health. You cannot separate the spiritual and the physical because one affects the other.

I am so lucky to have this opportunity to share in a philosophy I believe in with all my heart and soul because it is the way every human being deserves to be treated with love, compassion, patience, honor, dignity, respect and empathy.

So in the spirit of John Lennon’s two most popular songs … we can work toward creating a world where we strive each day to make a difference in the lives of others by first beginning with ourselves. I wish you joy in 2011!

December 17, 2010. Tags: , , , . Assisted Living, Eldercare, Long-Term Care, Person-Centered Care. Leave a comment.

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