The Faces of BPSD

I am really proud to be a part of a group of advocates who are campaigning to #BanBPSD. I have written about BPSD before. I am also not the only one – there are many profound and eloquent writings about the movement to think differently about dementia, including articles from people living with dementia, Kate Swaffer and Howard Gordon.

BPSD, “behavioral and psychological symptoms of dementia”, is a term that is used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, dis-inhibition, delusions, hallucinations, and sleep or appetite changes.

Thinking differently about dementia includes the need to rethink how we currently frame the expressions of people living with dementia through a primarily medical/clinical lens by labeling them as BPSD. It is important to note that, by definition, a symptom is a sign of abnormality. So, when we use the term BPSD we are immediately labeling the way a person is acting as abnormal, and thus problematic.

LABEL BPSD

Although it is important to change the language of BPSD, perhaps it is more important to explore and rethink the current paradigm behind BPSD. This paradigm suggests that expressions of people with dementia are meaningless, intolerable, and entirely a manifestation of brain pathology rather than reflective of one’s lived experience in a complex world (coupled with brain changes that make it challenging to navigate).

The term BPSD does not recognize that these symptoms can also be normal human expressions.

The term BPSD does not reflect the possibility that expressions of people with dementia demonstrate the resilience of the human spirit.

The term BPSD does not allow for the understanding of “behaviors” as problem-solving rather than problem-making. Here is an example of what I mean by this.

I was in a nursing home, and a woman with dementia was sitting by the nurse station. She yelled, “COME HERE!” every time someone passed, so she yelled it almost all day.

silhouette-3265766_1280

I watched as people walked by her, trying to ignore her. People even went the other way around the nurse station to avoid her. A person stopped and took her hand and smiled at her. She stopped. I heard someone label it as “attention-seeking behavior”. In part, they were right. She wanted someone to SEE her. However, the way it was framed was wrong. She was solving her problem of wanting to be seen, rather than making a problem. To see this as only problem-making is reflective of a current paradigm that labels these expressions so that they are seen as abnormal, meaning they are different from the supposed “normal” behaviors of people who are not living with dementia.

An antidote to this paradigm is to see people with dementia as us. To not see people living with dementia as “other”. To try to see things from the perspective of persons living with dementia, rather than only our perspective. To understand that their brain changes influence how they see the world, and thus how they interact with it, but that this is true for all of us.

As we embark on this campaign, I hope to see open discussion that challenges us to build a new paradigm that supports our common goal of creating better lives for people with dementia. I hope that this paradigm is born of the multi-dimensional, experiential perspectives of people living with dementia, as they are our greatest teachers. With that in mind, I wanted to share some stories that perhaps begin to explain how I came to thinking differently about people living with dementia, how they express themselves, and how we might better support them.

migratory-birds-157638_1280

We are coming back from Tallahassee, where “Hal”, a person living with dementia, his wife “June”, my colleague Peggy, and I had met with elected officials to create awareness of the experience of dementia and the need for funds and support. As we sit down to dinner in a crowded, noisy restaurant, Hal is visibly upset and frustrated as he attempts to read the menu. He rather crossly tells June to order for him. Peggy gently remarks that it was a long day and asks if he is tired. Hal acknowledges he is and shares that he often feels this way at the end of the day. In fact, he says, he is so tired at the end of the day that sometimes he is angry. He says he literally sees red. He yells at June sometimes during this time, and he feels terrible about it. But it feels like he is unraveling, after a long day of keeping it together.

Is this what we call “sundowning”? Or is this just a normal response to the extreme amount of energy it takes to focus and function when you are living with dementia?

hammer-1278401_1280

I am facilitating an “early stage” support program. It is me and eight men living with dementia who have been meeting for over 5 years. They are in deep discussion about a court case I presented to them – specifically, was this person guilty? There is joking, seriousness, and storytelling. In the next room, their wives are meeting, and I later learn that they were talking about the lack of decision-making ability of their husbands. In particular, they were sharing how upset their husbands become when they tell them they can’t do something, or their anger when they help them. I reflect that my relationship with these men is based on facilitating what they can do, and that their wives are struggling instead with their losses. They do not see what I am able to see with their husbands.

Do people act differently when they are approached as if they are deficit? What it is like to have a spouse do everything for you after years of you doing things on your own? Is frustration, depression, anger a natural human reaction to losing control?

gearshift-1351052_1920

“Maria” is living with dementia. She tells me that she is no longer on autopilot anymore. That it is like she is driving a stick shift. Except she is really bad at driving a stick shift. People around her either tell her she is doing things wrong, or they try to do things for her. She tells me how she is frustrated and upset all the time. At herself. At others.

Would we not all feel extremely irritated if everything we did was difficult? If we could see in people’s eyes that we were failing at things we previously did with ease?

I am meeting with “Anna”, who is living with dementia. We are coming up with a plan for her to continue to do the things that are important to her. She shares that she does not leave the house very much anymore. She does not feel she can do anything “right” anymore. She is embarrassed. She does not want to be a burden to her family.

Is this apathy? Or is this a normal reaction to adjusting to difficult challenges that threaten your identity and autonomy?

nail-2202271_1920

I am walking through an assisted living community with the Director. We pass “Paul”, who is sitting on the couch and quietly reading a magazine. The Director says to him, “Paul, I heard you tried to cut open your window using those nail clippers. We had to take them away because you cannot do that.” Paul says, “WHAT????!!!! You are the one who took them? You filthy @#$%^&**.” The Director says to a nurse, “We need to get him a psych eval. That is not appropriate.” “That is not appropriate, Paul!” she calls to him.

Is Paul the combative one?

goodbye-2669587_1920My friend is telling me that her dad, who just moved into an assisted living community, is on the verge of getting kicked out. They say he is agitated and combative. I ask what happened. “They say he is angry all the time,” she says. “Did they give you an example of when he was angry?” I ask. “He wants to go home, and they told him he couldn’t. And he just lost it.”

Is this unreasonable behavior? Or, is this just unreasonable to the staff, because they don’t want him to leave? Is it abnormal to leave a building? Is it normal to have strangers tell you that you cannot leave a building?

swan-200461_1920

I am working in a “memory care unit” in a nursing home. “Jack” just moved in. He is a world-renowned architect. He does not want to be there. He is repeatedly told that he is staying at a hotel for a while. Occasionally he orders room service from me. One day I hear him yelling. His care partner went into his room to help him shower. He is appalled that someone would dare come into his room and suggest that he needs help bathing. When the care partner insisted, he pushed her out of the room.

Is this combativeness? Or a normal reaction to a really strange hotel service?

I am picking up “Jeannie” from the Houlihan’s down the street. Jeannie lives in our memory care neighborhood and “escaped”. When she sees me, she smiles. I ask her how she is. “Just fine,” she says. “What a lovely day,” she remarks. It is perfect outside. Jeannie has grass stains on her jeans. She is an avid walker.

When it is beautiful outside, I like to “wander” too. Sometimes I like to sit on the grass and just be. I do not feel this is abnormal.

These are the faces of “BPSD”.

The more that I heard from people living with dementia, the more that I saw them as whole human beings, just like me, the more I became unable to see them as patients, abnormal, broken. I became unable to see their actions and expressions as abnormalities and problems, because I saw myself in them. For me, this was the starting point for thinking differently about dementia.

27 thoughts on “The Faces of BPSD

  1. You give great examples of why there are situations that causes stress. I didn’t see how the situation should be handled, do we as care partners just wait and be patient and try to have them take a shower later in the day? What that time doesn’t come and their incontinence requires immediate action?

    Liked by 1 person

    1. Those are great questions, Daniel! Each situation is unique and the challenge and opportunity is that there might be different ways of approaching it. In some cases, yes, I would say it is best to be patient and let a person take a shower later. Or, it could be how you approach someone to ask him or her to take a shower. Or, making the shower experience as enjoyable as possible, using things that makes a person happy (e.g. music, scents). Or, asking whether the person likes showers in the first place? Maybe really thinking about what about a shower might be frightening (for example, sometimes people do not like to have water spraying down on their head). More broadly, I think it is really try to see things from the person’s perspective, honoring that their expressions are communicating something to us, and knowing them deeply so we can support them in a way that meets them where they are (not necessarily where we are). Here is a GREAT resource for some ideas on care partnering from my colleague Karen Stobbe: http://www.beinginthemoment.org/ I also highly recommend Al Power’s book, Dementia Beyond Disease, which also suggests how to proactively and continually think about well-being so we are meeting people’s needs of identity, connectedness, autonomy, growth, meaning, and joy. When these needs are met, when they are primary, we can truly support a person to live well. Here is a link to a webinar he gave on the topic: https://www.youtube.com/watch?v=42DvFgXEPKk. Thanks so much, Daniel, for bringing this up and sharing.

      Liked by 1 person

    2. I was reminded of Jo Ann Rader’s work on Bathing without a Battle. A thorough solution to what you find at work, Daniel, is well addressed in this DVD which every nursing home in the country got free from CMS a few years ago. See if those in leadership positions where you work are interested in looking at this issue for everyone who lives there.

      Liked by 1 person

  2. While visiting Canada many years ago, I first heard about “responsive behaviors” as an alternative to the horrid BPSD. Since that time, I adopted this term in order to put the onus on us to figure out what triggers distress. I used it in my little book for direct care workers, The Art of Dementia Care. Keep up the good work!

    Liked by 3 people

  3. Dear Sonya,

    I enjoyed your article, its what we have evolved to teach in our Dementia Studies program, well done! We ought to be in touch, my wife Dr. Roxann Johnson is one of the few Americans with a PhD in Dementia Studies from Sterling University in Scotland, see her TED TALK on Guess Who is Taking Care of Your Mother. A talk based on her three country comparative study of nurse aides. She is on the band wagon to improve the plight of CNAs in America, they are the working poor and have 100 hrs of training and a test to qualify. A dog groomer has 1600 hrs of training and a test. In Canada CNAs have a year of training and are paid middle class wages.

    Two years ago we published this highly acknowledged article in Behavioral Science on End of Life Dementia Care Partnerships. In regard to what you said in this article, I developed America’s first MS in Dementia and Aging Studies online at Texas State University Sociology Department. We promote seeing dementia as a cognitive disability with abilities we need to explore. Our program is all about human rights for the disabled, dementia citizenship and care partnerships, with more dementia friendly homes, adult day services and even an airport that is dementia friendly as is the case of Heathrow. Dementia Villages are based upon European models and need to be tested objectively for their good and bad points, that means some well designed studies. I enclosed a copy of our article and I will be writing a Focus section for ASA coming up. Look forward to exchanging ideas with you, again well done on your article. Good luck in your consulting business, Cheers, Chris Johnson

    Christopher J. Johnson, PhD
    Clinical Professor of Sociology

    M.S. in Dementia & Aging Studies
    See: http://www.gradcollege.txstate.edu/programs/msda.html
    Department of Sociology
    Texas State University

    Liked by 2 people

  4. Sarah Burger, RN, FAAN

    Working for the National Citizens’ Coalition for Nursing Home Reform (now Consumer Voice) in the 1990’s, CMS called together a stakeholder group to work on the original MDS. While, I was never able to move the needle very far, CMS agreed that “Problem Behaviors” was a pejorative term. The compromise, was to medicalize the term by speaking of “Behavioral Symptoms of Dementia.” While that was an enormous victory at the time, it did not begin to change the way those living with dementia should/would be treated. Carter Catlett Williams, Lois Evans, and Neville Strumpf were the researchers that allowed these small changes in language.. Thank you for working so diligently and sensitively on this issue.

    Liked by 2 people

    1. This is somewhat of a personal response, but I just have to give a cyber hug to you, Sarah! My work in aging services began as an ombudsman on October 1, 1988. Five days into my job,my boss sent me to the annual NCCNHR conference. NCCNHR was truly the foremother of the Pioneer Network. Thank you, Sarah for your fidelity to the mission! The history of NCCNHR, now Consumer Voice, needs to be told again at the Pioneer Network Conference!

      Like

    2. Sarah, I really appreciate this history. I think it also reminds us that we are continually striving to do things better, as Consumer Voice does, as the CMS group did…. It is so important for us to critically evaluate, on an ongoing basis, what we say and do, especially as we hear different voices that add to our understanding of the experience of dementia. I know that Consumer Voice has modeled this for years and thank you.

      Like

  5. Sonya, you’re individual stories are most compelling. You’re overall concern for us older folks and our forgetfulness is very warming. I’ve held hands with family dementia on three occasions. I can still see them so childlike, lost in the present. I worry about my own forgetfulness and fight it as best as I can. I challenge my mind with the written word. My fictional book, “Indefinite, the Woman Who regained Her Youth”, will be published in October. It took three years of research, learning, comprehension and six years writing and rewriting trying to get it right. I could have titled the book, “The new age of aging.”
    I never started writing until the age of 72. The past 2 summers I competed in 4 open water swims races. 2K ocean races and 1 mile bay races. I meddled in all four in the over 70 age group. I’m 88.
    Please tell the one’s who can still remember, to be active in mind and body and to believe in its power.

    Like

  6. Sonya, you have articulated a very important concept in this post. You call for a paradigm shift in how we look at, relate with and respond to persons living with dementia. You are in the company of other visionary thinkers such as Dr. Al Power who calls us to relate to persons with dementia from their strengths,and to see things from THEIR perspective. His book, DEMENTIA BEYOND DRUGS, lays that out very well. Also, Gene Cohen, Ph.D., MD calls for the same paradigm shift in his book as it relates to the aging process, THE MATURE MIND: THE POWER OF THE AGING BRAIN. Such a shift calls for a real transformation of the president medical-model culture too prevalent in too many settings. Keep reminding us, Sonya!

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s