Creating A Meaningful Existence
By Barbara Speedling, Quality of Life Specialist
If you are going to create a meaningful experience for someone, you have to start by figuring out what makes them tick – what is it they find meaningful in their life and why? It may seem overwhelming to start with such a broad view, but it’s the only logical place to start – at the heart of the matter.
What makes life worth living? The answer to that question will be different for everyone. Some will tell you that their family is who they live for while others might say they live for their careers. Some may evaluate the worth of their life by how much money they have, others by how much excitement they can experience and still others will judge their life’s worth by what they have done to improve life for the next generation.
So, if you are going to help make a life meaningful and worth living, you have to look deep, beyond the obvious and, in some cases, struggle to identify what matters. Once you do however the rest, as they say, is easy.
One important rule I like to follow is to interview staff and review the medical record after I’ve met the individual I’ve been asked to assess. I find interviews are far more productive when I take the person at face value and make my own assessment on ability and capacity based on the interview. Without preconceived ideas about mood and behavior, without knowing great details of why the staff finds the resident’s mood and behavior a challenge, I am able to be completely objective.
Too often, staff dismisses what a resident has to say about what is causing a particular mood or behavior because they either do not take the time to listen or because they misunderstand the message. Conditions like dementia, aphasia and brain injury can complicate the manner in which the resident expresses his/her thoughts and feelings. Unless the listener is sensitive to the complexity of the communication the opportunity to identify triggers is lost or significantly compromised.
For example, the resident who is sitting in the dayroom has had a stroke and is now unable to speak begins to cry when she hears a song on the radio she used to love to sing. Unaware of her connection to the song, staff does not understand that it was the music that made her cry and attempt to leave the area. Staff prevents her from leaving the area for safety reasons and she reacts by striking out at the staff member.
Since they don’t understand the trigger staff is likely to say that her crying is just something she does. Her striking out is also misunderstood, causing her to be labeled a “behavior”.
It has been my experience that a good many episodes of challenging mood and behavior begin with a lack of satisfaction at some level. Not being allowed to get up and walk if you want to; not being able to go swimming every morning; being ignored when asking a question or requesting assistance; not being able to get in your car and drive to Dunkin’ Donuts for your own French vanilla coffee; or having nothing meaningful to do for hours on end every day for the rest of your life.
Begin with the obvious. Improve your assessment skills. Change your focus. Learn to listen. Find out what really matters to this person and find a way to satisfy them. It may take a little ingenuity, but there is a way to get to the heart of the matter.
The most important question: Age, illness and other challenges aside, if you had the chance today to do the one thing you absolutely love to do, what would it be?
Second most important question: Why do you love it? What does doing (whatever it is) do for you?
Once you have the answers to these questions – keeping in mind the answers may sometimes come through family or friends for residents unable to talk with you – you can begin to explore ways to help the person find greater satisfaction. Some examples:
- Facts: Middle-aged woman, brain injured, comatose, vent dependent: known to collect butterflies, loved the smell of lilacs in the spring, enjoyed music by the Beatles.
- Activity intervention: butterfly mural painted on the ceiling tiles over the resident’s bed; aroma of fresh lilacs used in room; Beatles music on as scheduled (not to be played continuously and variety is maintained).
- Facts: 93 y/o man with moderate dementia: He says that he would go fishing on his boat, that he loves being on the water and the smell of the sea. He says he feels free and peaceful when he’s fishing, especially if he goes out alone. His family fills in the details of where he fished and about his boat because these are details he no longer remembers.
- Activity interventions: Create a fisherman’s environment in his room with photographs of his boat, prize fish, with family on fishing trips or pictures of the ocean and his favorite fishing spots.
- Develop an activity in which he can share his fishing experiences with other residents who may also enjoy fishing; support his ability by helping to arrange photographs and other memorabilia he may use during individual activity visits.
- Develop a weekly ritual where you review fishing conditions in the area. Give him the opportunity to reminisce about trips where weather became a problem or how he learned to read the weather charts. Use some navigational tools and maps in conversation, helping him to remember what these things are and giving him the opportunity to “use” them and show you what they are used for.
- Create a wall display in the dayroom or in a corridor to acquaint the staff and other residents to his fishing hobby and what it means to him and about him as a person. Make sure he knows you have recognized him in this way and make a big deal out of unveiling the display. Doing so will help him remember who he is.
- Activity interventions: Create a fisherman’s environment in his room with photographs of his boat, prize fish, with family on fishing trips or pictures of the ocean and his favorite fishing spots.
- Facts: 78 y/o alert, oriented woman who was admitted for short term rehab, but was unable to return home due to lack of ambulation/ADL support: owned a successful real estate firm until two years ago when she sold the business and retired; is known to be smart, strong, persuasive and aggressive in getting what she wants; loves all things cultured – the ballet, the opera, the annual fundraising gala for Lincoln Center. Says that she loves being in the city, love the “pulse” of New York. Expresses frustration over being “pinned down” as she perceives it. Sees herself as intellectually superior to her peers.
- Activity interventions: create a “city” atmosphere in her room with posters and artifacts that will give it that urban feel. Make sure there is a bookcase for her favorite Opera scores, novels and Playbill collections. Make a space for her civic awards for philanthropy and for support of the Mayor’s Council on the Arts.
- Assist her in finding avenues to continuing her civic involvement. Disability and residency in a long term care facility should not prevent participation in community events that the resident finds pleasure in. As long as the resident is capable of traveling outside of the facility there is the opportunity to continue membership and participation in most all pre-admission activities.
- Work with local arts organizations to host meetings and events at the facility. This would allow the resident to take a more active role in the planning and hosting of events that are meaningful, inspire anticipation and excitement and fill the resident’s long day with the kind of activity she would have done were she at home.
- Organize a group of residents, staff and families who enjoy the opera or the ballet, or who would be interested in starting a book club. There is no rule that says activity must be attended by residents alone. Given the personality and background of some residents, mingling with staff and families would be more satisfying than with peers who are not able to engage in conversation on the same intellectual level.
- Activity interventions: create a “city” atmosphere in her room with posters and artifacts that will give it that urban feel. Make sure there is a bookcase for her favorite Opera scores, novels and Playbill collections. Make a space for her civic awards for philanthropy and for support of the Mayor’s Council on the Arts.
Understanding who someone is from this perspective will help you and the interdisciplinary care team look more deeply at what matters. Good medical and custodial care does not a quality life make without meaning. Person-centered care requires that you think differently about life and living, differently about what matters, what challenges, what satisfies and what makes life worth living.
So, what do you love to do and why?
Collaborating Across Boundaries in Health Care Delivery: What’s Old is New
By Diane L. Dixon, EdD
We have been talking about coordinating care and collaborating across boundaries for as long as I have been in health care, more than 25 years. It is interesting to me with all of the recent debate over the new age of health care reform that we are still talking about collaborating across boundaries as if it is a new initiative. As so often happens in health care, new names are given for old challenges and invoke a burst of new energy and debate such as what we are experiencing with accountable care organizations (ACOs), for example. These are groups of providers that come together to provide coordinated care to defined patient populations. Needless to say, ACOs require collaboration to be effective.
What health care professionals have always known is that to provide person-centered care, you have to work together across multiple boundaries – hospitals, nursing homes, community-based care settings, nurses, physicians, departments, disciplines, etc. This is not new; we have been talking about it for years. But somehow when the day-to-day realities emerge, the silos reappear. One key question for everyone involved with providing person-centered care is: What will it take to minimize the barriers to really collaborate? What will it take to put egos, competition, blame, and power struggles aside to focus on doing what is right for the person entrusted to care? What will it take to hold the best interest of the patient, resident or client in the center of all of the variables and professionals that are involved with doing what is best for them?
I have worked with many health care providers over the years and I have not met one yet who did not care about people. What I continue to learn is that when care delivery is at its best, all who are involved are collaborating well. There is no doubt that person-centered care is very hard work in today’s complex and demanding environment. But examples of good collaboration across health care delivery boundaries are all around us. What can we learn from these positive examples? What can be done to expand and continuously improve collaboration and, ultimately, person-centered care? You have the answers.
This is not the time to be sidetracked again by the latest health care debates and politics. This is not the time to let the swirl of complex issues impacting health care delivery today overwhelm and interfere with what you know in your hearts and minds to be best for people entrusted to you. This is the time to release old mindsets and conflicts about what did not work in the past and embrace new ways for working together to provide the most effective person-centered care.
Just a few tips to remember when collaborating:
- Focus on your common purpose
- Clearly define mutual goals and accountability for outcomes
- Don’t take relationships for granted—
- Develop mutual respect and trust, communicate effectively, give/receive positive and negative feedback; manage group dynamics
- Actively listen to diverse perspectives
- View and use constructive conflict as a positive means for—
- Asking thoughtful questions
- Solving problems
- Gaining consensus on complex issues
- Act with honesty and integrity
- Use disappointment as an opportunity to learn and improve collaboration
Medicare Agrees to Provide Better Access to Nursing Home, Home Health Care and Outpatient Therapy Services
By Anthony Szczygiel, J.D., Professor, University at Buffalo School of Law
Editor’s Note: Person-centered care has had a positive effect on Medicare regulations across the board in recent years. This continues to be the trend now that the federal government has taken into consideration maintenance therapy services, in both home and skilled environments, to help individuals maintain their level of functioning, especially as it relates to those with chronic, debilitating diseases and comorbidities.
Medicare is formally rejecting the “improvement standard” that has blocked many members from getting needed therapy or nursing services. To settle a lawsuit, the federal agency has clarified its policy on “skilled care.” The updated policy defines skilled care as that which can only be performed safely and effectively by, or under the supervision of, a qualified therapist or nurse. In the case of a therapist, the covered services can include a maintenance therapy program.
The Settlement Agreement in Jimmo v. Sibelius is effective now. No longer is it a good reason to terminate therapy, or refuse to start services, because the individual has “plateaued” or the services were for “maintenance.” Rather than asking whether the care will help the individual to improve, the key question is whether the individual’s condition requires the qualified therapist or a registered nurse to be involved in their care. This means that Medicare will cover skilled services needed to maintain the individual’s current condition or to prevent or slow further decline.
The skilled services are those provided by either a qualified therapist or a registered nurse (RN). They apply to home health, skilled nursing facility and outpatient therapy settings.
The plaintiffs said that in many cases providers denied these services by labeling the person’s condition as “stable”, “not improving”, “maintenance” or “has reached maximum potential” The result was twofold:
1) the member no longer got skilled services that would help them; and
2) without the skilled services, Medicare no longer helps to pay for nursing home care, or home health care.
The clarified standards can help anyone on Medicare, whether on traditional Parts A and B or in a Medicare Advantage Plan. Almost all individuals over the age of 65 are Medicare members. Also, a large number of younger disabled individuals are enrolled in Medicare.
The plaintiffs said that the “improvement standard” especially hurt patients with chronic conditions such as Multiple Sclerosis, Alzheimer’s disease, Parkinson’s disease and paralysis.
Medicare will not cover services when the member or unskilled caregivers can provide all that is needed. For example, when a maintenance program does not require the skills of a therapist because it could safely and effectively be done by the patient or with the help of non-therapists, such services will not be covered.
The Agreement does not change the scope of Medicare benefits for nursing homes or home health care. Medicare can cover up to 100 days in a nursing home, after a three-day hospital stay. Plaintiffs said many nursing homes improperly cut off members well before the 100 days were used. For example, therapy would be stopped because of a “lack of improvement.” The clarified standards may allow more individuals to make full use of this Medicare benefit. Therapy services provided after the 100 days may be covered by Medicare, but not the full room and board.
There is no day limit or annual cap for therapy services provided through a Certified Home Health Agency (CHHA). However, many CHHAs limit their case load to short term cases, with therapy programs that only last two to four weeks. Once the CHHA ends the therapy, the member also loses the home health aide services included in the Medicare home care benefit. The clarified standards may allow more members access to the home care benefit, and the home care benefit may continue for a longer time.
The Center for Medicare Advocacy is the lead law firm in this national class action, Jimmo v. Sibelius. Their website links to the court documents and other helpful materials.
See, http://www.medicareadvocacy.org/hidden/highlight-improvement-standard.
The Center believes that this settlement will not increase the cost of the Medicare program, and in fact may provide cost savings.
The skilled maintenance nursing and therapy that is at the heart of the Settlement is usually low-cost, low-tech care that will often prevent the individual from declining further and requiring more intense, more expensive care. In addition to being the right and legal thing to do, covering services such as those included in the Settlement Agreement may actually be more cost-effective than failing to provide these services.
In an October 24, 2012 editorial, “A Humane Medicare Rule Change,” http://www.nytimes.com/2012/10/24/opinion/a-humane-medicare-rule-change.html?partner=rssnyt&emc=rss, the New York Times recognized the proposed Jimmo settlement as reversing an “irrational and unfair approach to medical services.” The Times also noted that significant cost savings could result from covering necessary services to maintain an individual’s condition. As The Times recognized, when people receive medically necessary nursing and therapy services that enable them to maintain their functioning or slow their decline, many are able to stay home and avoid expensive hospitalization and nursing home care.
The U.B. Institute for Person-Centered Care will be providing two live presentations by Mr. Szczgiel on: Covering the Northtowns: April 12, 2013 Time: 2-3:30pm
Covering the Southtowns: April 26, 2013 Time: 2-3:30pm. Please visit the web for more details
Should We Drop “Dementia” from the DSM-5?
I was recently asked if I would be willing to write a blog post about the American Psychiatric Association’s plans to drop the word “dementia” from the 5th edition of their Diagnosis and Statistical Manual of Mental Disorders, due out next May. The new manual will replace “dementia” with two classifications: “minor and major neurocognitive disorders”.
This announcement has caused a good deal of advance consternation, and an article by geriatric case manager James Siberski in the latest issue of AgingWell (http://www.agingwellmag.com/archive/110612p12.shtml) highlights many of these concerns.
As you might expect, I have a lot to say on the topic. Would it surprise you to know that I am not totally opposed to the concept? It is a very complex issue, so I will try to tease out some of the nuances here. I will start by describing what I think is good about the decision, then address some of the concerns that have been raised, and some lingering concerns of my own.
The APA decision to remove the word “dementia” was a response to concerns that the term was contributing to the stigma of the condition. According to etymologists, the earliest English usage was in the early 1500s, taken from the Old French word démence, meaning “madness” or “insanity”. At that time, insanity was a concept applied broadly, centuries before cognitive disorders were understood and separated from psychiatric illnesses. (We still struggle with that separation today—see below.)
Is there stigma attached to the word “dementia” in our society? Absolutely! We see it every day, in all walks of life (though I personally have seen more stigma attached to the word “Alzheimer’s”). A lot of the concerns raised about the new terminology have been centered on the potential effects of removing a word that is in such common usage throughout society. This is the first case where my feelings are decidedly mixed.
In theory, I strongly support the word change, because I am a staunch advocate of culture change and I believe that language choices help define our worldview. This makes any argument about word familiarity less convincing in my mind. After all, the majority of people use terms like “difficult behaviors”, but I would never let that fact stop me from avoiding the term in my own speech and trying to convince others to change their language too. So if the word “dementia” truly creates stigma, we should be equally insistent on changing it as well.
I also do not necessarily buy the argument that the DSM changes will increase the workload of most clinicians. My psychiatric colleagues are quite faithful in reporting the various DSM diagnoses and axes on their consultation notes, but I don’t know many internists or other practitioners who ever bother to do that. In my practice, I described diagnostic categories like schizophrenia, bipolar disorder, etc., but I never wrote out the official classifications, nor did the people with whom I practiced. (The fact that the DSM on my own office bookshelf is the 3rd edition—released in 1980 and revised in 1987—is a testament to how often I pull it out for reference.)
Furthermore, we are required to update medical classifications all the time. New scales, diagnostic criteria, and terminology are constantly appearing in the literature. So I don’t buy the doomsday predictions of the extra work that this might create. And the directive to try and distinguish different forms of dementia is really no more than what we already do.
My last supportive comment is that this is coming out of our national psychiatric association, which to me represents a major step forward in their thinking. I have seen a lot of stigma come out of this body over the years and I applaud their bold step in addressing a major aspect of stigma head-on.
But I do have concerns. The first is that there seems to be no coordination of decisions that are made on such a large scale and affect so many stakeholders. Mr. Siberski makes the excellent point that major organizations (Alzheimer’s Association, NIA, CMS, American Neurological Association, etc.) continue to parse out and classify “dementia”, apparently totally out of the loop of what APA is doing. Why can’t these groups talk to each other about such a huge issue? If we really want to remove stigma, then such changes need to be part of a more global movement to reform our language, one that has the support of many such stakeholders. (A shining example of better collaboration is the document of new dining standards for nursing homes, which was developed in conjunction with regulators, physicians, dieticians, culture change organizations, etc., before it was released.)
I also have issues with the classification itself. The use of “major” vs. “minor” neurocognitive disorder mirrors the way the DSM has long classified different types of depression. This can be problematic, however, when there appears to be such a spectrum of ability, rather than two clearly distinct categories. It almost suggests two different disorders, and as the AgingWell critique mentions, it ignores the concept of “mild cognitive impairment”. Once again, given all the work going on with neurologists around classification of MCI versus dementia, there should be more communication and collaboration here.
Regarding the actual terminology, I am as yet undecided. “Neurocognitive disorder” is, in my mind, less stigmatizing than “dementia”, but it doesn’t exactly roll off the tongue, particularly for the general public. If we want society to move away from the stigma of the word “dementia”, we need to give them an easier term to substitute than this.
I have been slowly moving away from using the word “dementia” myself—not so easy when it’s the title of my book! I often say “cognitive disability”—I like the mindset that comes with viewing dementia as a different ability, rather than a fatal disease. I sometimes say “forgetfulness” and have friends who strongly advocate for the term. I agree it’s far less stigmatizing and helps you see the whole person, though I also understand others’ objection that these conditions represent far more than simple memory loss.
But while I struggle with better language choices, there is a word in the new DSM that bothers me a lot more than any of these: and that is the simple word another. Each description of the neurocognitive disorders contains the caveat that the symptoms must not be “attributable to another mental disorder” (my emphasis). This revives the debate of whether dementia should be considered a psychiatric disorder at all.
Just today, British advocate (and person living with “whatever-it-is”) Norm McNamara posted the question to his Facebook friends as to whether dementia should “come under the mental health banner”. The majority of respondents said “yes”, but I continue to have concerns.
I have expressed before that seeing dementia as mental illness is one of the factors that leads physicians to treat the experiences of dementia in a similar manner to psychosis. This is a huge problem, because there is no neurochemical basis for using these drugs in dementia. The delusions of schizophrenia result from up-regulated dopamine activity, whereas in dementia, dopamine levels are generally low to normal. So dopamine-blocking drugs (i.e., antipsychotics) should not be expected to provide a similar benefit—why does no one talk about this?? Furthermore, one does not have to be “psychotic” to have a different experience of her surroundings, if normal processing pathways have been altered or lost. This “mental disorder” view is a big part of why we are mired in antipsychotic drugs to begin with.
At the same time, I am not advocating for dropping this family of conditions from the DSM entirely. If someone expresses something that seems abnormal to us, our reference books should list all possible causes, whether psychiatric or neurologic.
And just to muddy the waters a bit more (as Jesse Ballenger pointed out after a recent post), seeing dementia as neurologic illness can also lead to an overmedicalized view of people, so terminology and classification are only a part of the larger problem of stigma.
Confused yet? I am! This is tough stuff, but we must do whatever we can to not make life more difficult than it needs to be for people living with dementia and their care partners. If forced to summarize all of the above musings into a set of recommendations, I would suggest the following:
1) Rather than simply coming up with their own terminology, the APA should consult with other major organizations, to try and find some consensus. Lack of common wording is ultimately more confusing to the public than any one term alone.
2) We should continue to challenge the use of the word “dementia” (which is indeed stigmatizing), but do so in the larger context of a re-vamp of much of our language around the condition, moving toward a discourse that better reflects and centers on the whole person.
3) We should continue to include this family of conditions in the DSM-5, and keep it in the section that lists neurologic, rather than primary psychiatric illnesses.
4) Both psychiatrists and neurologists need to bone up on the extensive literature around person-centered approaches to dementia, to help them continue to evolve their views, language, and approaches.
This is the beginning of a new dialogue on cognitive disabilities. Let’s keep it up!
2012 in review
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 3,600 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.
How A Daughter Learned to See Alzheimer’s Differently
By Martha Stettinius, Author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir”
At age 80, my mother, Judy, is living with advanced dementia (vascular dementia and probable Alzheimer’s disease), and I’ve served as her primary caregiver for 7 years. She’s lived in my home in Upstate New York with my husband and two young children, in assisted living, a rehab center, a “memory care” facility, and a nursing home.
When Mom moved from her isolated, lakeside cottage, where she’d lived alone for 25 years, into my home, she withdrew into her room, often refusing to come out for meals. I worked outside the home, and she refused to go to an adult day program. I knew little about dementia, and I made a lot of assumptions about her capabilities and feelings. Over the years I’ve come to appreciate how my mother remains herself and “here” despite the ravages of the disease. Healing old wounds, our time together has been not a “long good-bye,” as dementia is so often called, but a “long hello.”
When Mom lived with me, I saw her withdrawal and stubbornness as extensions of her often difficult personality, not as symptoms of dementia. I tried, for example, to reason with her by explaining things over and over, and it took me some time to learn more artful ways of communicating. I reached out for help from a local Alzheimer’s caregiver support group, a county Family and Children’s Services caregiver counselor, and a psychologist who specialized in elder care issues. I read a lot of books about dementia care, and the few memoirs available at that time about dementia caregiving. But it would take several more years for me to appreciate all the ways in which my mother remained whole and capable.
After just 3 months of living with Mom it was clear that we each needed more space and independence. Mom lived comfortably for the next 2 ½ years in a nearby assisted living facility, although she spent most of her days staring at the big-screen TV, refusing to go to activities that were geared more for the “independent living” residents. Throughout my visits, her doctor appointments, and our outings for lunch, I continued to judge her behavior as the effect of her life-long personality, not as a sign of a damaged brain.
In 2007 she fell, possibly during a small stroke, fractured her pelvis, and lost some of her ability to speak clearly. She suddenly became incontinent. I visited her daily at the rehab center, and it was there that I began to see dementia differently. I live in an intentional community, and had just attended a community discussion about how we could better support our one neighbor with dementia. The group talked about many things, such as helping people with dementia feel useful and needed, and I felt inspired to try a different approach with my mother. The next day, I decided to visit Mom after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasures we could find.
At a table under a tree in the courtyard, I looked into my mother’s eyes and said, “Mom, I could really use a hug.”
“Sure, sweetie!”
We held onto each other a long time. I took her hands in mine. Pausing to find the right words, Mom said, “The two of us…have come…a long way.”
I smiled and squeezed her hand. “Yes, we really have come a long way.” Was she remembering what we used to be like together, how hard we’d worked over the years to grow closer to each other? I wanted to cry when she said this. Did she really remember all those years, or was she just saying something polite that she might say to anyone she’s known a long time?
“Let’s keep going…in that…direction,” she said. She was still smiling and looking deep into my eyes.
With this, I thought she really did know what she was saying. And that’s all I had ever wanted–“to keep going in that direction.” I wanted us to grow closer, if only by annoying each other less and enjoying each other more.
“Yes, Mom, let’s do that. I’d like that.”
With the incontinence, my mother could no longer live at her assisted living facility, so I moved her to an excellent “memory care” facility. Mom would live in this memory care facility for nearly 3 years—years that seemed her happiest in a long time. Firmly in the middle stages of dementia, she joined the activities, sparked a romance with one of the men, and generally enjoyed living in the moment, no longer tortured by awareness of her disease. I appreciated more and more the gifts of her company, taking time to enjoy her instead of just rushing through my caregiving tasks. However, I still equated my mother’s jumbled language with loss of self. Part of me assumed that because she could no longer speak in long, coherent sentences, she was similarly unable to experience complex emotions or complex thought.
In 2010, when Mom could no longer feed herself and had to move into a nursing home on Medicaid, I learned from several experts in dementia that I might be underestimating my mother’s needs and abilities. At a gerontology conference I listened closely as Dr. G. Allen Power described dementia as a shift in a person’s perception of the world. People with dementia can still learn new things, he said, and there continues to be the potential for growth and enjoyment of life. I could see that potential in the way that Mom seemed to develop affection for the staff in the nursing home. I read books by Dr. Bill Thomas, Anne Davis Basting, Joanne Koenig Coste, John Zeisel, Dr. Dennis McCullough, and others, and realized for the first time that there was probably much more going on in my mother’s mind than I had thought. With that realization I felt a deep regret and sadness. Maybe I had avoided her true feelings because it would have been too painful for both of us, and I couldn’t do anything about them beyond visiting her. But I found myself wishing that I hadn’t equated her jumbled language and physical deterioration with loss of self and awareness. In 2010 I vowed to talk to my mother as I would anyone else (protecting her, of course, from anything painful). I vowed to try more non-verbal communication, using touch, gesture, and facial expressions.
Now, two years later, if I pay close enough attention to my mother as I talk to her, I almost always see an immediate response—a flick of her eyebrow, a widening of her eyes, a soft snort through her nose when she’s amused. Despite advanced dementia—despite the fact that she cannot walk, speak, or feed herself—she enjoys people, seems to recognize certain favorite staff and visitors, and shares her stunning smile. Judy is still “in there,” and though I have experienced many moments of grief and loss, I still feel her love.
Martha Stettinius is the author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,”available at major online book retailers. She serves as a volunteer representative for New York State for the National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com.
What It Means To Be Human
By Rhonda Rotterman, Executive Director of WNYAPCC
I’ve been teaching person-centered care to health care professionals across Western New York for more than three years using various theories, principals and concepts. Part of this education begins with asking the simple question of, “What sets us apart from animals?”
Webster’s dictionary defines humanity as, “the quality or state of being human.” But what does that mean, to be human? Apart from that fact that we are bipedal, humans are uniquely capable of abstract reasoning, language, introspection and problem solving. Other higher-level thought processes of humans, such as self-awareness and rationality, are considered to be defining features of what constitutes a human. Even greater than this is our desire to care for and love one another, our community and those who share it with us.
The need to love and to be loved and the foundation of relationships sets us apart emotionally from the animal world. This became apparent to me one evening as I was sitting in my family room doing some research. My college age children told me of a crow that lay in our flower bed in the back yard seemingly paralyzed from some unknown cause. As they approached, it did not move but the fear and desire to flee was apparent in its wild eyes.
“Don’t let Hollie, (our 12-year-old Border Collie) out unattended,” my son explained, “because she might hurt it more or pick something up from it.” I uttered my approval of that assessment and continued on with my work. As the hours went by, I watched how periodically those two children would go out from time to time to check on this ailing bird. At one point I saw my son walk out there with a can of peanuts and throw a few down on the ground, watch and then come back into the house. I asked him what he was doing and he said, “I dunno, maybe he’s hungry.” And then, I thought to myself, that’s it, that’s humanity kicking in. The desire to help, even in the darkest of circumstances, results in the attempt to bring basic needs, comfort, and assistance in some way. It’s what separates us from the animal world.
There were no other crows rallying around this bird to comfort it. It lay there alone, letting Mother Nature do her job. This touched the hearts of my children, who knew this bird could be dying, but tried desperately to comfort it in some way. These valuable, insightful pearls of wisdom warmed my heart and reminded me of what it means to be human. It’s why health care professionals enter the field; to make a positive difference in the lives of others every day, even if that means comfort when cure isn’t an option.
Person-centered care in its simplest form speaks of the importance of human connection and relationship; the condition of our humanity and wanting to make a positive difference in the lives of others every single day.
More on Antipsychotics in Nursing Homes
By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester
Editor’s Note: This blog was originally posted on ChangingAging.org on May 1, 2012.
Well, I’m back from Italy and have a lot of rants to share. But webmaster Kavan Peterson suggested I mention last Saturday’s large Boston Globe article on the problem of antipsychotic overuse in nursing homes, so I’ll start there (read the article here).
This article details the extent of off-label antipsychotic use in nursing homes, particularly in Massachusetts, where rates are among the highest in the country (28% of all people in Massachusetts nursing homes who do not have an FDA approved indication for these drugs–such as schizophrenia–are receiving them).
The article thoroughly discusses the high level of prescribing, the low level of attempted drug tapering (even after symptoms resolve), the significant side effects of the drugs, and the concerns raised by both consumers and by the regulators about this issue. The article also recorded several responses from nursing homes about the need for the medications–not surprisingly, every home interviewed (including a home with 71% antipsychotic use) claimed that all of their drug use was necessary and appropriate. But a follow-up article puts the lie to these claims by showing that a number of homes have provided better care without the drugs.
Anyone who reads this blog and the other pages of ChangingAging is no stranger to our criticisms of such drug overuse. So without rehashing the points of the two articles, or all of the details of previous diatribes, I’d like to just highlight a couple of important facts that need to be considered as the media becomes more and more aware of this problem:
1) This is not simply a nursing home problem. Nursing home drug use is easily audited, and they are therefore ripe for criticism. While that criticism is justifiable, the big secret is that antipsychotic overuse occurs everywhere, and what little research has been done suggests that the absolute magnitude is much greater in the community than in nursing homes.
My own audit of a cohort of 200 people who came to St. John’s Home in 2007 showed that of those with a moderately-severe or severe level of cognitive disability, fully 50% had been taking antipsychotic drugs in their own homes before they moved in! Indeed, many of those likely had hospitalizations and eventual placement at our home due in part to the pills they were taking. If you estimate that for every person with dementia who lives in a nursing home in the US, there are at least 4-5 living in the community, then the numbers can quickly add up. A recent published study of community-dwelling people with dementia found similarly that antipsychotics are widely used in all living environments.
2) It’s time to stop simply focusing on the antipsychotic drug as the “bad guy.” There is a much larger issue at fault here, and that is the basic notion that behavioral distress is a symptom of a diseased brain and therefore needs some sort of pill. Antipsychotics get all the attention because of their well-publicized side effects, but the real problem lies in using any pill for a situation where there is an unmet need or an inability to cope with the environment one is forced into.
The homes profiled in the second article have largely realized this. Rather than looking at distress as a “problem behavior,” they have pursued a path that emphasizes relationship, an understanding of each person’s history and individuality, and an ability to follow individual rhythms and adjust the environment, in order to help each person succeed in finding comfort and meaningful engagement. If several nursing homes can completely eliminate their use of such medications, as about 150 in the country have, then it is hard to argue that any nursing home needs to use these drugs, except in the rarest circumstances.
3) The key to solving this problem in long-term care lies in transforming our model of care. This is what many would call “culture change,” though I am pretty much done with that term, as it has become too vague and improperly applied, which has rendered the term virtually meaningless.
The idea that antipsychotics are bad is one that CMS and state watchdogs have latched onto, but it is of no avail if nursing homes are not given an alternate path to follow.
A transformational approach to care has three components. First is a new view of dementia; one that cultivates strengths, rather than stigmatizing and disempowering the individual. This approach requires that we see a person with dementia as a whole person who, due to disability, is experiencing the world differently than she used to, and therefore needs to be enabled to continue to engage successfully. This also involves honing our ability to be fully present, and to find better ways to connect with people who may not process information the way we do.
Second is the physical transformation of the environment. This not only applies to creating buildings and physical layouts that reflect the values of home and familiarity, but also that create comfort, independence and functional competence.
Lastly, and perhaps most important in my mind, is an operational transformation. This means that the myriad ways in which long-term care operates must be consistent with the new philosophy we espouse. This applies to how decisions are made, who makes each decision, how information is communicated, and how conflict is resolved. In addition, it applies to which staff actions are encouraged by organizational policies and how performance is measured. A home that grades staff members on the number of tasks they complete in a shift will never create an atmosphere of flexible, individualized care.
This last point cannot be over-emphasized. It is the reason why so many organizations get stuck in their transformational journey. Also inherent in such operational change is a move away from the rigid schedules and routines that are dictated by institutional approaches to medical and nursing care, toward a more natural flow of daily life (see my recent post on “sundowning” for a prime example).
4) The most successful organizations have a medical director and a director of nursing who are strong believers and champions of medication reduction and innovative approaches to care. Unless these two individuals are driving the process, it will never succeed.
I’ll be speaking more about these topics at a government-sponsored symposium in DC in June. And much more educational information will be result from a meeting of experts that was held last month at CMS. Stay tuned.
Time to Care
By Kezia Scales, Doctoral student, studying the delivery of person-centered care in the US and UK
“I told Rose at about 6:30 that I’d come back to help her around eight. From then on, every time I passed by her room, I could hear her calling ‘help! Hey-yulp’ … When I went in again, I asked her what she needed and she said, after a pause, ‘… some company’. I said briskly – cringing as I heard the words come out of my mouth – ‘I’m sorry but I can’t provide that, Rose, I’m too busy helping other people right now. I’ll come back at eight to help you’.”
Last fall, I spent four months training and working as a certified nursing assistant (CNA) in a long-term care facility in Western New York as part of my doctoral study on the delivery of person-centered care in the US and the UK. The quote above is excerpted from the lengthy observational and reflective notes that I wrote after every shift.
When I pulled on my scrubs and headed to work, I was already quite familiar with person-centered care as a concept, a theory, a philosophy. But I wanted to see how it is understood and implemented (or not) “on the floor”, moment by moment, by those who spend the most time with elders. And very quickly I came to realize that time may indeed be the crux of the issue as I found myself juggling the varied demands of the CNA role, sometimes imperfectly and at the cost of my own commitment to person-centered care. That interaction with Rose* is a perfect example.
Person-centered care approaches – whether promoted by the Eden Alternative, the Pioneer Network, or other champions – emphasize that relationships between staff and elders are key to supporting elders’ individuality, autonomy, choice, and dignity. And we all know that relationships take time, especially in long-term care settings, given the added challenges of mental and/or physical impairment.
Through their “close and continuing contact” with elders, to use the language of the Eden Alternative, CNAs are best-placed to develop these supportive relationships. CNAs provide upwards of 90% of direct care to elders in long-term care facilities, assisting with activities of daily living such as eating, dressing, bathing, and using the toilet; performing a range of clinical tasks such as recording vital signs and collecting specimens for testing; assisting with range-of-motion and other mobility measures; and engaging elders in activities.
Person-centered care asks that CNAs complete these tasks in flexible, individualized ways, encouraging elders to exercise their choice and independence at every opportunity. Some facilities are certainly trying to implement supportive operational changes, for example extending mealtimes so that staff can honor elders’ preferences about when and what to eat.
But we must remember that CNAs are responsible for a “card” of residents, not just one. And, as I can confirm from personal experience, this keeps them busy from the moment their shift starts until the last task has been charted. An important aspect of the CNAs’ role – albeit one that is rarely acknowledged – is to organize and reorganize their time throughout every shift in order to meet the needs of all their residents, with the underlying awareness that giving more time to one elder usually requires borrowing it from another.
Here’s an outlying example from the current phase of my research, in which I’m working in a similar role in a long-term care facility in the UK. One gray morning about two weeks ago, as staff gathered in the nurse’s office for shift handover, one of our elders passed away. I was saddened to think that Selina had been alone when she died, while we were all sitting in an office just a couple of doors down. Yet I also recognized that, if an aide had skipped handover in order to sit with her, s/he would have missed important information about the rest of the residents. This illustrates the tensions inherent in the daily delivery of person-centered care in institutional settings: tensions between balancing individual care against the needs of all elders, within workload, staffing and regulatory parameters.
And this comes back again to the issue of time. The staff who work in these settings require time to reflect on the challenges they face, to discuss them collaboratively and to explore alternative approaches. Importantly, allowing time for reflection may also help mitigate the psychological distress that staff experience when making hard decisions in the prioritization of care. The question to ask is: do we take the time to build the relationships with and among our direct-care staff that support them in developing relationships with their elders?
Time is of the essence. There is no quick fix for the three plagues of loneliness, helplessness and boredom recognized by the Eden Alternative – it takes time to develop relationships, to allow elders to exercise as much choice and independence as possible, and to support their meaningful participation in community life. But nonetheless we must act quickly to support the efforts of facilities and individuals to implement person-centered care, because every moment that passes risks another elder calling “help!” to the reply of “I’m too busy to care”.
It’s time to care about taking time to care.
*[Please note that all names have been changed to maintain the anonymity of those involved in the research.]
