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: , , , , , , , , , . Person-Centered Care, Culture Change, Eldercare. 4 comments.

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

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

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

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

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

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

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

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

This is wrong, wrong, wrong.

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

This is wrong, wrong, wrong.

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

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

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

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

This is wrong, wrong, wrong.

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

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

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

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

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

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

You decide. I have.

Richard
richardtaylorphd@gmail.com

 

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

Another way for you to stand up and speak out.

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

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

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

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


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

Choice vs. Consent

By Kathy McCollett, Organizational Culture Change Specialist, PHI

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources

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

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

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

Through the Looking Glass, Part Two

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

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

Nursing homes suck.  Monte Coffman said this at the 2011 Illinois Pioneer Coalition Summit.  I’ll have to admit.  I kind of agree.

The first time I heard Dr. Bill Thomas speak and he said similar things about nursing homes I can remember feeling offended and a little ticked off.

The premise behind “Through the Looking Glass” was and is for those of us working in long term care to see how much it does suck.  If we could only prevent hip fractures, strokes and especially Alzheimer’s disease maybe we wouldn’t need them. Nursing homes don’t suck.  It’s needing one that sucks.

The first National Pioneer Network conference I attended I remember hearing a nurse during the opening ceremony speak about one of her resident’s saying, “I don’t care how pretty you make the bathroom, I just want to be able to use it when I need to go.”  My eyes welled with tears.  At that time, we had just made our bathrooms “pretty,” but I hadn’t thought about making sure no one had to wait to use it. Most of us working in long term care have no idea what it’s like to rely on someone else for our basic needs.

I moved into the nursing home for 24 hours.

Let me back up for a minute and tell you a little about myself. I am fiercly independent. Stubborn. I really love my job. I don’t do sitting around very well.

Fast forward.

I moved into the nursing home for 24 hours and as you know, I was scared.  I hated to admit that.  I was afraid I wouldn’t know how NOT to do “independent, stubborn, loves her job, ‘me.’

I hesitated to go to my room at first. What if it became permanent?  I was out of my comfort zone. I was afraid.

I am a healthy 39 year old woman. I don’t have dementia (although I can be a little forgetful at times, like last Monday when I forgot to open the garage door before I backed my car out).

All I could think about was, “What if I had dementia and didn’t have a clue where I was compounded by these normal feelings of fear being out of my comfort zone?” I would try to get the heck out of there. And you would try and stop me. I would try to get the heck out of there. And you would try and stop me. Over  and over again.

Something else I didn’t mention about myself. I used to be really introverted and when I get out of my comfort zone I become introverted once again. I became a shy person again. I stayed in my room most of the afternoon. If I were a real resident with dementia you would probably say I was depressed, not adjusting well, and an elopement risk. You would want to put me on medication.

We talk a lot about how quickly a person can become “institutionalized.” It’s true. I felt it. I fought it in my mind. It’s what scared me. Not only though do our residents become institutionalized, but so do those of us that work in long term care.

The day I moved in, I went to the activity room to play BINGO. When I returned to my room, there was an incontinent pad on my bed.  It made me angry. I can independently use the bathroom. I don’t wet myself. Why would they put that on my bed?!  I asked my caregiver, “Why do I have an incontinent pad on my bed?”  Her response, “ummm….we put one on all the beds.”  You do what?! Why?!  We had an ah-ha moment together.

Do those of us that work on long term care act as institutionalized as those of us that live in long term care feel? Did we cause this? Can we stop it?  Yes we can.

Matthew Lysobey, administrator of Mission View Health Center in San Luis Obispo, whom I fondly refer to as “the soap guy,” asked his staff why they thought their residents weren’t happy. One of his caregivers responded, “My life would suck if all I had to look forward to every day was thanking everyone for helping me and no one needed me anymore.” He is right. That does suck. It takes away purpose in our lives. Listen to the words being spoken in your home. How often do you hear yourself or your staff say, “It’s ok. We can do that for you. That’s why we’re here. You just relax and let us wait on you.” As fabulous as that sounds today, as busy working adults, sitting around being waited on all day is depressing.

During my 24 hour stay, I was told at least a dozen times, “I’ll do that for you.” At one point, when I was carrying my own dishes to the kitchen and a caregiver said that to me, I chided, “I want to do it myself.  I have to feel like I still have purpose in this world.” She probably thought I was cranky and needed a nap or maybe she would speak to her nurse about getting me an anti-depressant because I wasn’t adjusting well.

I am making it sound like my stay was terrible.  It wasn’t.  I want to do it again. I will do it again.

I am thankful every day for the job that I have and the team I work with. We stand together against the use of psychotropic medication until everything else has been tried. That, along with the non-use of personal body alarms, has become part of our non negotiables.

Six of us so far have moved in for the 24 hour challenge. This isn’t a challenge to see if you can hack living in a nursing home.  The challenge is to open your mind to think about better ways to care for those living in our home.  What better way to do that but to live it. I did.

November 16, 2011. Tags: , , , , , . Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. 6 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.

We Are Not the Alzheimer’s Generation!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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