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.

The Impact of Music on Memory and Language

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

Who can deny that music makes you feel good?  For most of us, the right melody with the right rhythm sends us into a frenzy of toe-tapping, hand-clapping, hip-shaking glee!  While every kind of music won’t elicit the same response from everyone who listens, exposure to music benefits every listener in a myriad of ways.

Studies at Northwestern University on the impact of music on children have shown improved vocabulary and reading skills.  Moreover, the researchers have found that “musical training has a profound impact on other skills including speech and language, memory and attention, and even the ability to convey emotions vocally. [1]

For people with cognitive and memory deficits, medical research shows us that music affects the brain in ways that can promote language and understanding beyond the spoken word.  New research also shows that music has a significant impact on reducing depression and agitation in people with dementia.[2]

Music does a great deal to evoke memory, with certain melodies bringing to mind pleasant memories of people and life events.  People identify with the song they danced to at their wedding, or the song that was playing when they had their first kiss at the Junior Prom, or sometimes, even the song that makes them remember a broken heart.

Whatever the story, hearing the music brings the memory rushing back with vivid images of where you were and who you were with at the time.  Using music in this way can be extremely comforting to people who are having trouble remembering.

Far from the creepy scenes in One Flew Over the Cuckoo’s Nest in which Nurse Ratched plays cheerful music to signal medication time, research supports the fact that music can be used to enhance recall.  As such, used appropriately, music can help residents to anticipate certain aspects of the daily routine, reducing the common anxiety seen in people with memory impairment in response to their own confusion over what to do next.

The music offered in most nursing homes and assisted living environments includes piped-in music over a central sound system, radio and/or CD music in the common areas, or live entertainment in one form or another.  In recent years, there has been an increase in the use of CD Walkman’s and iPods among residents, as well.  While each has their place, reaping the vast benefits of music exposure requires improved planning and thinking about how to use music in the environment.

Some things to think about in assessing the impact of music on your residents include:

  • Is music playing constantly in the environment causing it to become the equivalent of “background noise”?  Some facilities favor music piped in over a central system.  The music is generally loud enough to be heard, but not distinct enough to be compared to listening to music on one’s own.  In this example, the music becomes “noise” to many and interferes with their ability to hear conversation, their own television or radio, etc.
  • Have resident preferences for the type of music and favored artists been assessed comprehensively?  In instances where the population is multi-cultural, who decides on the common music offered in the environment?
  • Is music a passive experience or are residents engaged by staff in conversation about the music and the memories the music brings to mind?  Is music used to benefit other activities designed to stimulate memories, such as journaling?  Journaling can be an effective tool as a resident’s memory declines, offering staff a way to catalog “memories” for use in later conversations meant to soothe and/or comfort the resident.
  • Are live musicians chosen carefully for their appeal and skill at interacting with residents?  Entertainers who play badly or have little dialogue with the audience should be discouraged in favor of those who know how to elicit favorable responses by interacting and encouraging residents to participate physically as well as emotionally.

The best group programs are those that require active physical participation on the part of the resident.  There is an emerging focus on rhythm or drumming as remedies for residents with motor agitation and those prone to anxiety and restlessness.  Similar therapeutic effect has been shown in children with ADHD.[3]

Taking the following steps can help increase the positive impact of music on residents, particularly those with cognitive deficits and challenging behaviors:

  • Promote the use of specific music at strategic times of day (i.e. just before meals) to signal a recurring daily event;
  • Assess residents for the benefit of individual listening via Walkman or iPod of either preferred music or “white noise” to calm motor agitation and anxiety;
  • Use strolling musicians in small group encounters as opposed to large, passive music entertainment programs.  The musician interacts with the listeners, stopping to talk about the song and the memory it brings to mind;
  • Promote reminiscence discussions and sing-a-longs as part of large group entertainment programs over passive listening; and
  • Encourage residents who are able to perform for others by either playing an instrument or singing.  Participating in the actual making of the music, such as in drumming programs, will help the resident “feel” the music more completely.  In many instances, residents with dementia can continue to play an instrument they always played, even if they say they don’t know how.

Lastly, it has been my experience that the choice of music played in common areas is largely the preference of the staff.  While there is the possibility that the staff and residents share the same taste in music, observation suggests this is a rare occurrence.

Staff should be educated on the impact of music on residents, positive and negative.  A plan for use of music in the common areas should be developed to prevent the potential for background noise and to promote positive memory recall and enhanced communication ability in residents.

© 2011

[1] S.L.Baker, “Music Benefits the Brain Research Reveals, circa 2010,” NaturalNews.com, http://www.naturalnews.com/029324_music_brain.html

[2] Laird Harrison, “Music Therapy May Help Dementia Patients Especially,” Caring for the Ages, Vol.12, No.7 (July 2011): 1

[3] Michael Drake, “Drum Therapy – Therapeutic Effects of Drumming,” About.com, http://healing.about.com/od/drums/a/drumtherapy.htm

September 29, 2011. Tags: , , , , , , , . Culture Change, Long-Term Care, 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.

Pioneer Conference Takeaway: A Life Full of Meaning

By Rhonda Rotterman, Executive Director of WNYAPCC

You could practically feel the energy and enthusiasm at this year’s Pioneer Conference in St. Louis as person-centered enthusiasts set out to network and learn new strategies.

There seemed to be a great deal of focus this year on dementia and creating choice and autonomy for those that suffer with this disease.  Frameworks for change in this arena centered on learning about the ways in which human beings communicate through the spoken word, body language, inflection and tone.

We heard about the paradigm shift from viewing dementia as a progressive brain disorder to increasing our ability to respond to  “behaviors” as an unmet need or a form of communication. We learned about the importance of connectedness, security and joy in the life of every human being despite their level of physical or mental functioning. And … we understood the importance of getting to truly know those we care for to gain insight into customary routines, preferences, interests and the forming of relationships.  We can’t accomplish the latter without realizing that permanent assignments across the continuum are critical in creating an environment of empowerment, personhood and home.

We can apply these principles to individuals who can no longer navigate their world the way we do, or communicate the way we do. When these individuals who are suffering cry out or act out, the medical model says it’s because they have dementia. In light of what we are learning as professionals, we ought to be saying, “What are they trying to tell me?”

Think about what we do in the course of the day that fulfills our basic existence. We sleep, eat, work to pay our bills and support our families. We are able to dress ourselves and navigate through the day achieving all of those things fairly easily. We take much of that for granted.

Now think about what we do that brings us joy, connectedness and well being. We have hobbies, interests, religious practices, meals with family and friends, vacations. Think about the number of things you do that brings meaning into your life. It’s why we work, why we get up in the morning  — it’s the MEANING of life. Sounds simple, right? To us it is simple because we control our daily lives. Imagine not having that control. Imagine not experiencing those meaningful things anymore. How important is basic existence then?

As I listened attentively to the various sessions, the one thing that continued to resonate within my heart and head was, “What is the meaning of life?” This is the mantra of what this conference and this movement are all about: Creating “meaning” no matter what stage of life we are in, no matter where we live and no matter who we are or how we act. Deep down inside, we ALL deserve and desire a meaningful life.

August 16, 2011. Tags: , , , , , , , , , , . Assisted Living, Culture Change, Long-Term Care, Person-Centered Care, Uncategorized. Leave a comment.

Not Dead Yet!

By Rhonda Rotterman, Executive Director of WNYAPCC

In the years I have worked in long term care I never really contemplated the individual as a whole human being. As a nurse, I was trained to identify disease and then figure out a plan to cure it or get the person to a stable state; ideally to return to as normal an existence as possible.

In long term care where disease and co-morbidities come in paragraphs, I viewed these individuals sadly as shells of their formal “normal” selves and felt the best I could do was to keep them pain free and as clinically stable as possible. Toward that end, I would consider myself a better than average leader as I carried around my clipboard and made sure t’s were crossed, i’s were dotted and everything was in its place. Each day my goals centered on adequate staffing, complete charting and making sure that all tasks got done by my direct reports within their assigned shifts or functions. Department of Health surveys were a focus and minimal complaints were a great benchmark for satisfaction.

Then I attended a three-day Eden Alternative ® training session on person-centered care and it was there I experienced my paradigm shift, my epiphany, my “ah ha” moment. I don’t think I made it through one day without sobbing thinking about how shortsighted I was with my goals and priorities. These were human beings I had the privilege of caring for each day: people who raised families, paid rents/mortgages, taxes, had trials and tribulations, enjoyed dinner out with friends and had loved ones who thought the world of them. I now understood more fully that these were people with a God-given purpose and who were still learning and growing — not individuals who were a task that needed tending and part of my already inundated day of “to do’s.”

My friend and songwriter Kareen King wrote a song inspired by a frail elder residing in a nursing home entitled “Not Dead Yet,” http://www.thegoldenexperience.com/p/kareens-music.html, and that song flooded the recesses of my mind while attending that training.

Well, there was no crying over spilled milk. I knew I had my work cut out for me and I was a Type A administrator on a mission to change the world. Mother Teresa said we do the best we can with what we know and when we know better, we do better. Well, I was all about “doing better” because it’s the way every human being deserves to be treated.

As a clinician I was trained to see the weaknesses and focus on making them better. What I have come to realize is that you cannot separate the physical from the spiritual. When one is ailing, the other will follow suit. When a human being is void of a caring human touch, when they lack love and companionship, when they lose their sense of purpose and have no reason to get out of bed the next day, their spirit begins to wane and we see that blunted affect creep in as they begin to withdraw. What we now know is that despite mental shortcomings these people are still in there, they are still the same. It’s just that the way they navigate their world is different and we need to engage their spiritual being as well as taking care of the physical. Take a look at this video from Memory Bridge and you’ll see an example of this http://www.facebook.com/video/video.php?v=1144833588209

Care partners (givers, doers), look past the task and see the person for who they are, not what they have become. They’re still the same individual; it’s just that their body no longer functions as it once did. Find a way to make that connection. Bridge the gap and truly know what it feels like to touch another and make a difference. No matter if you are the Pope or a homeless person on the streets of New York City, every human being desires to be loved and to give love in return (reference Maslow’s Hierarchy of Needs: http://honolulu.hawaii.edu/intranet/committees/FacDevCom/guidebk/teachtip/maslow.htm.

It’s all about relationships; it’s what makes us human beings.

April 28, 2011. Tags: , , , , , , . Assisted Living, Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. Leave a 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.

The Trouble With Nursing Homes

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

Here’s a central problem: For years we have built mini-hospitals for our elders to live in. Now we want to get beyond that. So what are we doing? We are trying to build hotels and fine dining establishments for them to live in.

How nice. But … when are we going to build them a home??

I got to take a little vacation to NYC last week and spent a night at a lovely Marriott. It had a very comfy bed, with a mattress and pillow that were chosen to be most pleasing to the average person who travels as I do. Same with the sofa, desk chair and bathroom. A nice place to rest my head and get out of the hustle and bustle when the day was over. Would I want to live there? Not on your life.

Same with the food. I love going out to a nice restaurant, as many people know. But every day? Three times a day? One of my favorite lunches is a simple PB & J, made by me with the brands I like to eat. When I’ve been on the road for awhile, I crave a meal that is simple, basic and surrounded by people who mean a lot to me.

So why do we do this? There’s one simple reason, as reader’s of Emi Kiyota’s blogs can tell you: We don’t ask the elders what they want. We renovate according to architect renderings, contractor advice and strategic planning by our leaders and consultants, none of whom have ever spent a night in a nursing home, nor thought about what it would be like to spend the rest of our days there.

We also confuse “expertise” with experience. For example, I am not a “handy” person. I can’t hang a doorway, plaster a ceiling or run electrical wiring. I also can’t draw blueprints and I know very little about building and zoning codes. But when we had a house built back in 1995, we sat at the table and directed the whole process. Why? Two reasons: (1) We’re going to live there, not the builders and architects, and (2) it’s our money.

And yet, the elders who live in our homes and pay for the privilege are rarely asked what would make a living environment better for them. We design according to what we think will best suit them, then go home at night to the houses and apartments we chose for ourselves and our families, and leave the elders in a place where they had no input.

Next time you want to do a renovation, give the budget number to a group of elders and ask them how they would spend the money if it were up to them. You might hear something very different from what you had planned.

 

October 21, 2010. Tags: , , , , . Long-Term Care, Nursing Homes. Leave a comment.

WNYAPCC Marks Its Second Year!

By Rhonda Rotterman, Executive Director of WNYAPCC

It is hard to believe that it’s been two years since the launch of the Alliance and already one year since we really began canvassing the eight counties of Western New York offering training, guidance and support to communities embarking on person-centered care.

I am so very pleased with the progress we have made, but more importantly, I am impressed with the inroads communities have made by changing operations, physical plants and asking themselves “why do we do it this way and can it be done differently.” Most importantly, it has been gratifying to see the inclusion of elders and care partners in the decision-making process.

Could you imagine an acquaintance coming into your home and telling you how it would be decorated, run and managed?  Seems ludicrous doesn’t it? But we do it every day to elders when we ask them to trade their independence at home for the help that they need physically in a nursing home or assisted living environment.  It’s a shame when you really stop and contemplate traditional institutional living.

Over the next few years we will begin to provide some hands-on assistance to communities struggling with specific operational challenges as they relate to person-centered care. We will bring in experts from all over the country who specialize in operational challenges and will offer their expertise to the various communities with training, on-site assistance and conference calls.

In addition to these wonderful things, we are going to focus a great deal on research and development. The Alliance has partnered with the University of Buffalo’s Nursing Department and has identified a researcher who will be assisting our communities to gather data. We will compile, compare and report this data as it relates to various measures such as quality indicators, satisfaction of elders, care partners and families, quality improvement, dementia measures and MDS data.

One of the most commonly asked questions that I receive is: “We understand why this is important and we want to make changes but how will we know what to change first?” My answer is always the same. First, all communities must go through a “Soil Warming” process involving all senior leaders from within that community. If there is not a oneness of spirit and understanding among those who drive the culture in your organization, you will have significant setbacks and roadblocks.

Second, the steps to any change involve three things: Vision, Education and then Implementation, in that order. The antidote to fear is always education. Last, if you want to know what to change first, ask the people who live and work there. There is where the most significant impact lies. After the wish list is made and you have weeded out what is not feasible either due to unrealistic expectations or cost, low hanging fruit is a good place to start followed by more challenging changes. As with anything, to hone a craft you must practice.

I am so thrilled to be a part of this change throughout our country. I am even more thrilled to see the outcomes and satisfaction for elders  and care partners, who work tirelessly in an industry that is looked upon so unfavorably. But, the times they are a changing and I predict that within the next 15 years we will no longer hear of the stigmas currently associated with elder care. That brush will have been retired and we will be painting with the colors of choice, diversity, individuality, love, compassion and integrity.

September 23, 2010. Tags: , , , , . Culture Change, Person-Centered Care. Leave a comment.

Leading in a Culture Changed World

By Robert Meiss, President and CEO of Beechwood Continuing Care

Several years ago while sitting in a retreat with our management staff, we began discussing the empowerment of staff and its importance in transforming how we care for our residents. At my table were several department heads who asked me during a break,” Will our positions be needed once we achieve staff empowerment?” Their thoughts — while logical — missed the big picture. They feared that if decisions and actions that historically had been their responsibility were delegated to others, what role would they play? I must admit I was shocked to hear that they were worried about their own jobs if we delegated many of their responsibilities to others. On the contrary, I assumed they would be excited to empower their staff to free them up from mundane tasks.

When the retreat reconvened, we had a great discussion on the future role of all management positions, not just department heads. The upshot of that discussion has become the approach we have followed ever since.

Simply put, direct supervisors and managers still need to spend most of their time dealing with the everyday issues of staffing coverage, discipline, problem solving, etc. However, the role of department and assistant department heads is slowly evolving from traditional tasks and routines to mentoring, teaching, and rounding. In other words, leading not simply managing.

Regardless of what type of manager you are, you must both “talk the talk” and “walk the walk.” The language we use, our interactions with residents, families and staff, and the teachable moments that come up each day have become a critical part of everyone’s job. When you think about it, isn’t that what health care leaders have always wanted to do? Most of us entered the field because we wanted to help people and to make a difference. Unfortunately, through no fault of our own, those wishes have been high-jacked over the years as the complexities of our world have forced us to be managers of tasks in order to avoid risk and liability.

You’re probably wondering how Beechwood is doing since that fateful retreat. I’d like to say everything went according to plan, but life doesn’t work that way. We have made real strides empowering our staff and supporting our department heads as they transition into their new role. However, between responding to state budget cuts, new survey processes, MDS changes, etc. we have not been able to devote the energy and time we had hoped.  So how far along are we? I like to fall back on my trusted measure of success. Is where we are further along the culture change continuum than when we started? The answer to that question is unequivocally, yes!

Culture change is not easy, nor is it fast. If it was, everyone would have done it years ago. As a leader, you must focus on your vision to transform the culture. In so doing, you can weather the day-to-day challenges while not losing sight of where you want to be. It may take longer, or be achieved in a different manner than you intended, but eventually you’ll get there. Hang in there. Be relentless and patient.

September 21, 2010. Tags: , , , , , , , , , . Culture Change, Person-Centered Care. Leave a comment.

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