Day 20: Who’s the Boss? Providing Person-Centered Care and Caring
By Bonnie Kantor-Burman, Sc.D., Director, Ohio Department of Aging
Editor’s Note: This blog was originally posted November 30 to the Family Caregiver Alliance’s “30 Days of Caregiving” blog
My mother was cared for by a wonderful woman, Darlene, during the time she needed long-term care and caring. One day, I asked Darlene if my mother could go somewhere with me—I don’t remember where, but it really doesn’t matter. What matters is the quizzical and rather piercing look I received from Darlene. Thinking that maybe she didn’t hear me clearly, I repeated my query. This time she responded not only with words, but with her arms flailing wildly for emphasis. “Why you are asking me?” she replied. “Your mother is the boss, not me.” And then, with a finger pointing my way she continued, “For heaven’s sake, ask her, not me.” Point well-taken indeed, and clearly never forgotten.
More and more states continue to “rebalance” their provision of long term care, focusing their efforts squarely on moving some of the care from more nursing homes to home- and community-based settings. This, of course, is not only more cost effective, but is what most folks tell us they want. Here in Ohio, our approach to rebalancing is multidimensional. In additional to shifting the balance back to providing more care in the home, we are also focusing on the message Darlene sent to me loud and clear. We are concentrating not only on where the care is delivered but also how, by whom and when. Think about it: If we are getting up on someone else’s schedule, going to bed when they decide and eating the food they think best for us at the hour they determine, are we really “home?” Or are we living in a house that used to be our home? In other words, who is in charge—or to paraphrase Darlene, “Who’s the boss?” After all, aren’t we the boss in our own homes? Don’t we make our own decisions whenever possible? And don’t we have real relationships with the people there?
Care in which the person needing the support is living as normal a life as possible and making as many of her own decisions as possible (regardless of whether the care is provided by family and friends or formal care from paid caregivers) is best described as person-centered care. It is the kind of care each of us would want for ourselves and for our loved ones. While there are many different approaches to person-centered care, the core values that unite them are choice, dignity, respect and self-determination. Person-centered care always is characterized by individual choice in schedule and relationship. To achieve this, formal and informal providers adjust their care and routines to the needs of the care recipient instead of the other way around. So, instead of being reassured that, “Mom is adjusting well,” in a person-centered care situation, a daughter will hear, “We are adjusting well to your mom.”
Perhaps a former care recipient said it best when she commented, “You haven’t lived ’til you’ve gone to the bathroom on someone else’s schedule.”
I would be remiss if I didn’t add that research suggests that everyone benefits from person-centered care. Health and functional outcomes are better, costs are lower and both providers and consumers are more satisfied. Sounds like a win-win-win situation to me!
Person-centered care certainly worked for our family. My mother, “the boss,” lived for a full six years being cared for and cared about by Darlene. She lived a full six years being loved by Darlene. In her own way, she loved Darlene right back. Isn’t this the kind of care and caring we want for all of our elders? Who’s the boss in your caregiving situation?
Resources
1) Ohio Department of Aging Web site: www.aging.ohio.gov
2) Ohio Department of Aging on Facebook
3) Ohio Department of Aging on Twitter
Day 20: Who’s the Boss? Providing Person-centered Care and Caring by By Bonnie Kantor-Burman, Director, Ohio Department of Aging is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.
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.
Meaningful Activity: What’s The Point?
By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC
I had a huge crush on a boy in high school. For a long time, I didn’t know his name, but I always looked for him in the hallway. As time went on, I learned his schedule and would just happen to be around when he was, hoping he’d notice me. My heart would pound and my face would begin to burn at just the sight of him. I was never brave enough to talk to him so nothing ever came of it. It was fun, though, and exciting. Something I looked forward to.
Saturday mornings are usually reserved for shopping and household errands that I have no time to do during the week. I get up early because I like to shop when the stores are less crowded. I have a certain sequence in which I do my errands, leaving the grocery shopping last. When I finish my errands, I clean my house. I get a great feeling of satisfaction when I’ve completed all my tasks.
There is a Victorian Museum near my home at which I host tea parties several times a year. As a member of the museum, I volunteer to cater these events because I enjoy the history and meeting new people, I love to bake, it’s fun and I feel good about contributing to my community.
Meaningful activity isn’t merely something to do. It involves so much more than simply deciding to do a particular thing. All of the things I’ve described to you are meaningful activities for me. These are the things that are exciting to me; the things I look forward to, the things I think about and plan for, the things that keep my life balanced and help me feel satisfied.
Every nursing home I have worked with has a program of activities that they say is meaningful. With few exceptions, every schedule has a variety of social programs that people attend regularly. In many cases, those who attend look forward to these activities and the socialization they offer.
What is lacking in all of these environments is true meaningfulness in terms of conceptualizing an intention to accomplish something, then planning your course of action and looking forward to carrying it out to your own satisfaction. In other words, there is more to activity than what I do in groups that are planned and executed by someone else. When we talk about empowerment and person-centered activities, we have to include these aspects of meaningfulness.
Many of the nursing home staff I’ve interviewed about quality of life are quick to point out that residents are given the opportunity, whenever possible, to express their lifestyle preferences, choosing routines, activities and foods that appeal to them. All too often, though, that autonomy is limited to the parameters established by the facility. If residents have no say in establishing the choices offered, being able to choose loses something.
It has been my experience that residents take greater pride and interest in their community when they are given the chance to help cultivate that community and establish relationships with those they share the community with. Involving residents in the planning of their routines is the first step in creating a quality environment.
So, how do you make activity meaningful for every individual? Begin by looking at the big picture. Scrutinize your activity calendar and ask yourself how many of those programs you’d truly look forward to and why? How much say are residents given in planning the activity schedule and the content of these programs?
Next, consider the alternatives to these groups. If I am not a joiner and I don’t want to spend my day doing those things you typically see on an activity assessment – reading, TV, music – what is there for me to do? I think this is where we are most challenged.
How do you meet the definition of meaningful for the individual? I think you have to start with yourself, as I’ve done here. Decide what is meaningful about the things you do each day and try to imagine how you would be fulfilled if you spent the rest of your days in the care and control of someone else.
Do you color? I see a lot of people who live in nursing homes coloring. If I were going to color, I would want more than one crayon to work with. Many of the people I see coloring are only given one or two colors to work with. Sometimes, they’re given watercolor markers that are almost dry. That doesn’t’ make for a very satisfying picture. Even your children would want more choices and a nicer finished product.
In this series, we will explore “meaningfulness” from the perspective of the person living in the institution. To begin this journey, each of us needs to spend time actually participating in some of the activities that are offered in nursing home dayrooms.
It’s not enough to say you could tolerate playing bingo for dusting powder and bargain cologne, you have to be able to tolerate that dayroom environment, all the people you will have to share the experience with, and still find the program meaningful, interesting, and something that amounts to a satisfying conclusion.
I think this adventure will help you to develop a customer focus, the first step to realistically evaluating the lifestyle offered to the residents. Once you are in it, then we can begin to talk about innovation, creativity, and achieving a daily routine that is as meaningful and interesting as it can be for each person in his or her circumstance.
Barbara Speedling ©2008
This is Culture Change: Dancing Man Edition
By Dr. Bill Thomas on March 28, 2011
How do we change aging? How do we challenge and then overcome the passive equation of aging and decline? The process starts with the individual. It starts with you. Alone. You have to be willing to stand up and dance to music no one else can hear. You have to dance and dance and dance until finally someone starts to dance with you.
Then.
You have to keep dancing.
Want to see the process of changing aging in action? Take three minutes and watch this video to the end. You will be tempted to click away it just shows a crazy guy dancing by himself.
Peer Mentoring: A Tried and True Intervention for a Relationship Centered Culture
By Susan Misiorski, BSN, National Director of Training and Organizational Development at PHI
Long-term care providers have the unique challenge of balancing the “culture of home” with the “culture of the workplace.” Long-term care employees, whether in home or residential care settings, are working inside people’s homes. This fact causes us to need to design interventions that have a clear and compelling impact on the employee’s experience of their workplace and the elder’s experience of home. Peer mentoring is an excellent example of one such intervention.
A mentor is someone who provides ongoing support that is not mired in the issues of positional authority that can sometimes accompany supervisory relationships. A mentor offers mentees a feeling of inclusion and connection, even in a workplace that may have cliques or subgroups that could otherwise cause a person to feel excluded.
The quality of relationships between employees will have a direct impact on the culture. A person can sense the difference immediately between the warmth that accompanies kind, respectful relationships and the coldness that follows in an environment where staff are not getting along. Employees in good relationship with each other are able to extend the same warmth to elders and family members.
Peer mentoring was first designed as an intervention to reduce employee turnover, particularly among direct-care workers in the first 90 days on the job. Evidence shows that mentoring is successful in this regard, but it is important to note, particularly in an economy where people are less likely to leave their job, that there are many more reasons to implement and sustain peer mentoring. This is not an intervention that should be reserved solely for high turnover situations.
Mentoring builds teamwork, creates a welcoming environment, supports personal growth and development, and improves employee satisfaction. Loretto’s PACE Central New York provides a wonderful example of an organization that began mentoring primarily to reduce turnover, but realized additional benefits of stronger relationships and more confident staff.
“The mentor program was great,” says Tami Irish, who completed her orientation in May 2009. “It made me feel confident … that there was always someone to call if I had a question or any kind of problem.” Mentors similarly have seen the difference the program has made. Peer mentor Deirdre Johnson observes that “more people are staying … If you put someone out there [without support], they feel frustrated and just quit. Now [they’ve] got someone [they] can talk to about even their [own] problems or the job problems. http://phinational.org/training/resources/case-studies/pace/
New York State has a strong need to ensure a welcoming workplace environment for direct-care workers. Employment for direct‐care workers is projected to expand by 33 percent over the decade beginning in 2008, increasing by more than 114,000 new positions. Home health aides and Personal Care Aides are expected to account for nearly 88 percent of this new demand (http://phinational.org/policy/phi-new-york/workforce-facts). We need to ensure we are prepared to attract and support potential employees into these roles.
Mentoring is particularly important in residential care homes that are implementing culture change practices that require direct-care workers to take on more flexible roles. To support the culture of home, direct-care workers are increasingly assigned to work in “neighborhoods or households” and their roles may include caregiving, light cooking, housekeeping, personal laundry and activities. These flexible roles require ongoing support and skill building — an ideal opportunity for mentoring.
Because mentored employees are more satisfied and supported, they are well positioned to contribute to a loving, comfortable home environment for elders and individuals living with disabilities. Peer mentoring is a relatively easy-to-implement, high-impact intervention to support a healthy organizational culture.
Drama About Families, Conflict and Aging
This short video is a drama about families, conflict and aging. A man struggles to balance his roles of doctor and son in his relationship with an aging father.
The Rights of Individuals With Dementia – 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 second 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.
Everyone, including individuals living with the symptoms of dementia has a right to:
- Feel safe
- Experience pleasure
- Experience a sense of control over their environments, people around them, themselves, their today, and their tomorrows.
- Experience a sense of self-respect, self-value, self-esteem
- Experience a sense of control of their privacy
- Experience a sense of their own abilities to solve problems
- Experience a sense of self-consciousness (being “non positional”) people come to know themselves as compared to others
- Experience a feeling of right and wrong, entitlement vs. earned, a right vs. duty, obligation.
- Experience a sense of themselves – beliefs, attitudes, dreams, values, self, individuality
- Maintain a sense of time, of tomorrow, of yesterday, of today
- Experience a sense of control and participation in positive interactions
- Experience love – giving it and receiving it
- Experience stimulation in each of their senses.
- Experience reminiscing, reflecting and its value, and control
- Experience being in charge of planning their own activities, choices, lives
- Feel like they own these experiences. It is a right, a responsibility, and a duty.
Please visit my website: richardtaylorphd.com (and sign up for my monthly newsletter)
Drop me a note at: richardtaylorphd@gmail.com
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The Three Plagues of Loneliness, Helplessness and Boredom
By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester
Principle #1: The Three Plagues of loneliness, helplessness and boredom account for the bulk of suffering among our Elders.
The key word here is “bulk.” This is a strong statement. It says that on a day-to-day basis, people in nursing homes suffer more from these plagues of the spirit than they do from their medical illnesses.
And that’s a problem. It’s a problem because we have created a model of care that primarily sees and treats medical illness. This model does not have an answer for these plagues; in fact it often contributes to them.
All of these plagues are painful, and they are all deadly. The first task of Eden is to recognize these plagues: know what they look like and how they manifest in medical illness, behavioral expressions and loss of well-being. Then we must create a new model of care – an alternative – to the model we have embraced for so many decades.
You can’t do this halfway. Ever since Eden set the bar twenty years ago, organizations have been trying to tweak the medical model to accomplish true change – and have failed.
When an Edenizing organization comes to any critical decision point, it’s like a Chutes and Ladders game. The culture change way is the ladder. We don’t always feel like we have the energy to climb it. It’s so much easier to “hop on the slide” that the old, institutional path offers us. But the slide takes us back toward the place where we started. Only the ladder – the hard road – will get us to our goal of eliminating the Three Plagues.
Don’t pretend they don’t exist in your home. Work to eliminate them. It’s the best work we can do.
“It’s on the Tip of My Tongue…”
By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester
There are changes in the way our brains process, store and retrieve information as we age, even for those of us who will never be diagnosed with any form of dementia. These changes become apparent as we enter our 40′s and 50′s. At age 56, I can stand up and speak coherently for hours about Eden, dementia or other topics of my choosing, and yet I can also maddeningly draw a blank when I try to pull up the name of an actor or a book I’ve read.
In last Sunday’s New York Times, Book Review editor Barbara Strauch wrote about research into new ways that we can help our brains to retrieve data, in order to accommodate the changes of normal aging. The memories aren’t gone, just buried a bit deeper. It turns out that there are triggers we can use to release those sticky memories; often trying out words with similar sounds or going through letters of the alphabet can shake the missing word loose and bring it to the surface. (more…)
