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.

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.

Through the Looking Glass

By Leslie Pedtke, BA, LNHA, Administrator at Aviston Countryside Manor

Editor’s Note: This is the first blog of a two-part series.

I’m moving into the nursing home in a few days. Oh, there is nothing wrong with me.  I’m moving in because I want to. (Really? You say?) yes really.  You see, I created this program with my staff called, “Through the Looking Glass.”  I challenged my staff to move into the nursing home and live as a resident. They had to pick a diagnosis and face daily challenges people in nursing homes face every day.

In a few days I’m moving into the nursing home.

We have done the program twice now.  I did not participate either time.  I was the creator of the program.  The one that had to oversee it getting done, I couldn’t be a participant. Right?

I created this program because I thought it was deeply important that the staff learn to empathize with those that live in the home in which they work.  I wanted them to know what it was like to have to wait on someone to help them do the things we take for granted, like peeing in a toilet.

In a few days I’m moving into the nursing home.

I have been the Administrator at Aviston Countryside Manor since 1994.  I know what it’s like to work in a nursing home. I think I have that part figured out. But, I have no idea what it’s like to live in one.

As my move in day gets closer, I have been asking myself, “What has taken me so long to decide to do this?”  To be honest, I feel a little embarrassed I never have.

In a few days I’m moving into the nursing home.

I will admit I’m scared.

You see, I have worked really hard on this journey of culture change.  I have been on the fast track of learning and teaching person centered care. Our community participates in a lot of dementia/alzheimer’s  education. We have learned that building relationships are important to doing consistent assignments.We don’t use personal alarms to prevent falls. Those living in our community sleep until they want, take showers when they want and choose what activities they want to fill their day with. If I choose to live there on my birthday, they will even celebrate it with the meal and dessert of my choice. I won’t have to wait for the monthly birthday party.

Sounds like a great place doesn’t it?

What if it’s not?

In a few days I’m moving into the nursing home.

What if the community I have worked so hard to create isn’t all I thought it was? What if I have been seeing it through rose-colored glasses?

It is easy to become discouraged when you are making changes in your community. I had to work really hard to not let the little things bother me and not let the naysayers bring me down. I had, and still have to, remind myself that one candle lights another candle. Change can be slow and sometimes I’m impatient.

In a few days I’m moving into the nursing home. I’m only moving in for 24 hours. (I know…big whoop) 24 hours for the eutopian long term care world I have created in my head to become a little tarnished.

I know we are a great home. I’m not just saying that because I refuse to see it any other way. It’s because people tell me. There isn’t a way to measure “greatness” so I have to rely on the compliments we are given. I know we aren’t perfect though. It’s those little imperfections I’m afraid to see.

What if those imperfections diminish my spirit? Slow down my motivation? Blow out the flame of the candle I am holding?

In a few days I’m moving into the nursing home. I have made my list of all the things I want to bring with me. Pillow, cell phone, laptop. Oh I almost forgot…confidence. I can do this.

November 1, 2011. Tags: , , , , , , . Culture Change, Nursing Homes, Person-Centered Care. 4 comments.

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.

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.

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