Making 2021 Better

Well, we are a full month in and where have we been? What have we accomplished in 2020 that will make 2021 better?

A little early to be asking this question? I don’t think so.

Everything we do has consequences, good or bad. The people we do or do not reach out to, the jobs we do or do not take, the ideas we follow through on or don’t. One thing that I heard repeatedly in the final two months of 2019 was, “We have not gotten anywhere in improving aging and dementia this year!” While I don’t agree with that statement fully, why was that? Sometimes red tape, funding, and paperwork hold us back, but in a day and age of LinkedIn, YouTube and other platforms to get information out into the world, we don’t have an excuse. There is a lot out of our control, but there is a lot we can control. What can we control?

Our interactions with others in our care.
The relationships we build professionally and personally.
The ideas we have that we can share with others to work to put into motion.
Our ability to see and listen.
Our programming (most of the time.)
How we support and educate our team.
How we seek out our own education.
There are many more! What would you add?

Knowing what is in our control we see many areas where we can improve the way we walk with others on their dementia journey. We see areas were we can improve ourselves and our teams that will have an important, local impact that may inspire other teams to follow your lead. We see ways a small moment with someone seeking connection with another human being can ripple through our community. We can control more than we think we can. So through the next 11 months left of 2020, let us take steps towards making 2021 better than today, filled with creativity, charity, kindness, compassion, and community. Let us use the public tools we have as brainstorming platforms, as a question and answer forums, as a way for us to make even a mustard seed size dent in the field.

Are you with me?

For You, Our Activity Professionals

We are 3 days into National Activity Professional week. It is not without our Activities and Life Enrichment staff that we could provide care and cultivate community to the best of our ability. The teams that lead everything from bingo to imaginative programming developed specifically for a group of individuals, are the front lines of our care communities. They are the individuals who are charged, not with a clinical or medical checklist, but a personal one and are called to become relational with our residents in a way that is unique and quite remarkable. This is the team that has the least amount of specialized training yet hold the greatest impact on the day to day life of the community. They become friends, companions, and family, and they hear the stories of each life with great compassion, curiosity, and at times sorrow. If you work for a care organization and do not know these individuals, get to know them and thank them. Call them up, drop a card in their office, or give them words of gratitude the next time you see them.

Activity professionals are more than the staff hired by anyone community, this group also includes those who are contracted to work with a community for any length of time or amount of sessions. These individuals are true salmon swimming upstream, seeking to provide programming, connections, and joy, all the while not having a team to support them, or the stability of a single community. These individuals are often paid anywhere between 60-90 days after the end of their service, making their dedication, a sacrificial one. They too deserve a, “Thank you.” Send them a card or an email. Call them up or text them. Hire them!

The work of activity professionals is more than what meets the eye. The programs they offer can transform our communities. The type and richness of each program seeks to improve the quality of life for everyone. triggering a chain of events that leads to a reduction in medical needs and staff burn out, saving the community time and money.

Often when we think of programming in our care communities we think of the standards, bingo, trivia, movies, music, games. We think of a few people coming out for an hour or two, or a large crowd gathering, seeking connections. But programming can be so much more than that. It can be creative, playful, childlike (NOT childish!), and it can be truly tailored to the specified personalities, interests, and hopes of the individuals we serve. No matter what programs are offered, there should be a much greater goal than filling a calendar or creating a feel-good environment for the sales and marketing team. Activity professionals are called to help reach the spirit of each person they are asked to serve, to help them continue to become, instead of solely reminiscing about who they were. They are called to see beyond (just as all care staff and community members), to see what each person can do, and encourage that movement to take place. They are expected to know how to work with individuals with dementia, move a wheelchair down the hall, support the resident in completing a task associated with the program, and understand the complexities of the multiple needs of the community. They are asked to pray for and with the residents, to hear their stories, to support them emotionally. They do all of this with little support, continued education, and recognition. They do this in part-time roles without benefits, a small hourly wage and little to no options for growth. They are remarkable people, with hearts larger than mosts. When they struggle, their struggles lie mostly in the abandonment of the administration of the care community. When they succeed their wins are taken by others. Often they are given the tools, but not supported in implementing those tools. They receive lip-service and are scolded when the medical team does not see the beauty of their role. Now, in saying this there are exceptions, but I have not met many.

To all Activity Professionals, working in great and beautiful ways, I say, THANK YOU! Keep going! We need you! You enrich the lives of others in ways you may never be able to understand. Keep dreaming, imagining, playing, envisioning a better way to fill your calendar and the time you spend with those you serve.

In a perfect world, your community would support you in attending conferences, training in the programs you see as beautiful additions to your portfolio of work, and would allow you to live fully in your role. They would value you the same way they value their highest administration professionals. To the communities that support this vision, THANK YOU! I hope you become the industry leaders, the change-makers, the new “normal.” But, since we don’t live in a perfect world, how can I support you?

One way that I am attempting to support you, is by offering on-line training in Creative Engagement and Dementia, to help you become better activities and life enrichment professionals working in our care communities (dementia or not.) Since this is a week when we finally recognize your great beauty and work, if you are an activity professional, let me know, and I will give you a code to take my online training at a discounted rate. Because this post is not meant to be a sales pitch (we all hate those, don’t we?) the details will be linked here. But I do hope you consider joining me. Let us change the story of the activity professional together!

Because I cannot say it enough, we cannot say it enough, THANK YOU!

How do We Value Our Care Communities?

I did some scrolling recently in aging and care. I looked at the communities and what they were promoting. I looked at the education of the people working in these care communities. I found a problem. You know how I feel about “person-centered care” these days, how it has become nothing but a warm fuzzy badge people put on their marketing and sales pitches. Taking closer examination, we know this is not always the case, but still, it happens too often. Corporate is dictating what must happen for individuals whom they will never meet, and staff is providing programming without first becoming relational with the people that trust them with their care. In the few times, I have been able to have candid conversations about the state of care, I have walked away saddened and furious by the direction we are heading.

There are two areas I find alarming. The education required for staff when hired (and after being hired) and the building design ego.

A level of formal education achieved, does not equal one’s intelligence, talent, character, or ability to do great things. To reach a level of education is not a marker for anything, but a point in one’s journey through this life. So as you see others achieve what they have set out to accomplish in this life academically, remember education comes in two forms, formal and informal, and your actions with the purpose you carry within you are what is truly remarkable. Yet, lawyers, socials workers, MBAs are being hired over people with true experience and passion for working in elder care simply because of the letters behind their name. The education of an individual cannot do all the work.

Once hired, we rarely provide the education our staff truly seek in dementia, in creative engagement, in becoming relational with a wide group of individuals, in current and best practices. Why are our networking groups filled with the sales and marketing team, when it should be filled with our CNAs and Life Enrichment staff?

Without beautiful care partners working within the building, without a care model that is not about money, image, census, corporate demands, or marketing warm fuzzies, with an organization that puts the sales department ahead of the CNAs, Nurses, and Life Enrichment team, this is not a community anyone of us would want to live in. Yet, we comment on the feel of the building before talking about the quality of life. The beauty of the building you offer your residents and community cannot do all the work.

I am not naive enough to think that education, money, sales, and image can just be left at the dumpster. Money is needed to care for your community, to keep lights on, to hire the staff you need. With all of the “beds” filled and a waitlist, you have stability. These are not bad things, but what is, is the way we view and treat each element of care. So what can we do?

I wonder if the industry is paralyzed by fear and the judgment of what the community and industry will think of who they are as an organization and care community? I wonder if we fear to look like a stereotype or will be judged if we don’t have a chandelier in our entryway?

Any real and good change starts at the lowest level in my book, yet without good leaders at the top, the culture change will be painful and difficult. Most people that work in the care industry today are good people. They came to the position they hold wanting to help, to make a difference, they saw something within themselves that said, “you will be good at this.” And, some maybe even came to this job because they needed a job, but even then there was something that sparked within themselves when applying for the position. Yet, we cannot rely on passion and character alone. We must support the specific, narrow, dedicated continuing education and support to help each individual thrive, both staff and resident.

What are our actions steps?

Allowing for our CNA’s and Life Enrichment staff to network with others, to expand their education in creative engagement and dementia.

By finding ways to implement those programs and certifications we have earned so they are integrated into our care model.

Engaging family to participate in programs and meals, allow staff to share meals with residents. We know the power of breaking bread together, so let us find ways and times to make that happen.

Forget about the judgment of others! All areas of life need this statement. I know the State has its guidelines and we have rules to follow, but where can we play? Where can we drop the judgment of other care communities and aging professionals, and find the freedom to truly connect with the community we are seeking to cultivate?

Don’t hire because of a degree (I know you do) and place into balance the informal and formal education of an applicant. You can a Social Worker is not needed to lead a Life Enrichment team. Think about where that advanced degree truly is necessary, and allow passion and experience to fill in the rest.

Fellow Visionaries! Do Not Give Up!

Every once in a while I hear a peer of mine say they are going to give up trying. Burnt out by the current medical and care world, tired of being told their ideas are not worthy of exploration or not inline with the “industry standards.” They are tired. We are tired. Not too long ago, I overheard a woman say that she was going to quit her position and move into a role where she could no longer be abused for her ideas. She was referring to an incident with a care community she worked for, poured her heart and soul into, deciding after she left, to implement one of her ideas in their memory care community. They executed the plan point by point and took credit as if the idea was their own. They did this, not only after she left the job, but also after they told the ideas didn’t fit the image they wanted, nor were any other communities doing anything like this program. I wanted to go up to her, hug her, and tell her to keep going! This would have been a touch creepy since I didn’t know her, nor was I fully apart of the conversation. I chose to not say anything to her. I regretted that decision later that day and posted on Twitter this statement,

“It is rough being a visionary, to suggest ways to improve care and connection, only to be knocked down and see the organization or program, a few months or years later, be implement without you, the exact thing you brought to the table. But keep going. We need you!”

I know this statement doesn’t make up for remaining silent, but I hoped a larger audience would see it, and maybe find some comfort, or at least feel a spark of energy to keep going.

Anyone at any time who has called themselves, or were called by others, a visionary or innovator, has experienced someone telling you your ideas are “stupid” (or a related statement fitting for your setting) and have them turn around without you to do exactly (or something almost identical) what you worked for and shared. It starts in grade school and moves into the professional world. It hurts, stings, is frustrating and causes us to feel a range of emotions. You have every right to go through this emotional journey, but please, don’t give up!

Whether you are the type of person that uses this experience to fuel you or not, know that we must keep going! While someone may have used your ideas and plan as their own, it was still set into motion by people who have a different lens of the world. You could go and do the program, exactly how you envisioned it, and it could be completely different because it came from the unique perspective and talents you bring to the experience. You may be working with a different group of people, in a different area or stage of life. The impact will be no less powerful. The lives you touch are no less worthy.

As I type this, I am feeling the sting of this experience. In short, a graduate program recently implemented two ideas that I had regarding theatre and older adults. These programs, while not exact, were quite similar to what I shared with the program back in 2012 in meetings with faculty. At the time of presenting these ideas and sharing how I would like to apply the degree to my work in aging and dementia, I was given the run-around. They combined a blend of comments with those sounding something along the lines of, “We don’t work with that population. It is not something we focus on and don’t see ourselves changing.” This hurt of course, but I moved forward. These theatre programs were put in place over the past two years, without me, without my input, without my knowledge, and one of the programs received international attention. This stings, respect for these individuals sinks lower, and where does one go from here? This place of hurt, betrayal, and abuse? We move forward! We create something new. We focus on those we wish to serve and support, and we envision a new program, event, and/or connection. There is enough work for all of us! While the actions of organizations such as this university are wrong and borderline unethical, it happens. It occurs on some scale every single day. If we are true visionaries, we will find something new, improve on what this group of people did, learning from their mistakes and enhancing their successes. There is another theatre piece in me, another creative idea already starting to take motion, and the people that this work will impact will far outweigh the hurt of this present moment. It is hard, but don’t think of the administration that is abusing you, think of the people these programs and models will benefit. If necessary, confront those abusing your innovation and vision, but don’t allow it to take over your every thought, or cause you to want to quit your job. Only you know the line that must never be crossed in your life. Keep going, keep creating, keep working towards a better way to care, serve, and support the lives of those around us.

Aging and the NADTA Conference

A conversation has started. Finally!

This past week, I attended the North American Drama Therapy Association’s annual conference as a presenter. It was a groundbreaking year with an entire afternoon of workshops and discussions revolving around aging. In a profession that has intentionally or unintentionally discriminated against working with this population, this is a massive step forward. For almost three hours we sat down and had a conversation, looking at the past, the present, and the future.

The past can be summed up as bleak, with few individuals working in the area. The work they did, and are continuing to do, however, should not be dismissed. The work is good, needed, supportive, but not nearly enough. When asking for books and research in the area of aging and drama therapy, only one book is ever mentioned. This book, Waiting at the Gate, while a starting point, is decades old, and outdated. I see a field that has become complacent. This profession needs a shakeup. It needs to leave egos behind, and spotlight populations must fall away in order to make way for Drama Therapy to live in the fullness of its ability and purpose.

The present is not much better than the past, but with the work of some visionary people, it is not quite as bleak. There still is great discrimination and academic snubs. The updated media packet was disappointing, to say the least. Much of the work rests in the place of a life enrichment specialist and manager, doing work that anyone else could do. Aging and dementia are not spotlight populations and bring comments such as, “Isn’t that work better suited for music and dance therapy?” Nadya Trytan, Kari Rogenski, and Karen Knappenberger have set out to change this view with their current research, that I hope produces a book. And, with this conference, a conversation has started. Each workshop was well attended and engaging. So, what’s next? There is great hope!

Each individual in the field of drama therapy needs to get behind education, support, and research, if not working directly, becoming indirectly supportive of such work. In the past, I have spoken about this, but we need to continue, recognizing our own fears, and seeing what causes us to push this population away. We need our educators to not discriminate against prospective students because they want to work with this population. And, we need to listen to those we serve. They are seeking the specific support a drama therapist can offer, may we step into that space to answer the call.

We need to continue the current work, but recognize the great skills and knowledge acquired during training, seeing the need for support in mental health and healing, not just in pursuit of joy and comfort. Each creative arts therapist must pick up where LETs leave off, in a way only a creative arts therapist can. Don’t rest in the past, run towards the unknown future.

In the days leading up to the conference, I couldn’t help but think of all that can be done in the area of drama therapy and dementia, as well as the performing arts and dementia. The statement that kept running through my mind that I shared at the conference was this, our current society puts out the message of, “I am repulsed by your weakness! I will medicate you and leave.” But we need to transform this statement in our work practices, in our hiring, in our acceptance of new students and further development of academic programs, and in our hearts to say, “I am NOT repulsed by your weakness and trials. I will stay and help you live the life you were created to live.” Drama Therapists (and all aging and health professionals) can transform our current state, but each person must use the specific talents, skills, and training they have to do so. We can do this if we are bold enough to trek through the storm. The past and present are messy and bleak, the future is filled with trials and unknowns. Hope persists so long as we listen to those we seek to serve, asking them to be our guides, supporting them through our creativity, joy, love, and community.

This conversation must continue, to look at specifics, engage in new ways of thinking about the profession, and to call out any BS in the education and training of new and established drama therapists.

Are you a drama therapist? What are your thoughts?

Creativity, Imagination, and the Human Spirit

Creative engagement is using our creativity and imagination to connect with others. We use storytelling, poetry, art, music, theatre, gardening, and maybe even crafts as something we can do together to become relational with one another. We tap into that part of the human spirit that dementia can never take away. Through this, we honor the dignity and purpose of each individual, helping them live the life they are seeking, to best of our ability. We find success, community development, and joy. Creative Engagement allows us to help another individual experience an activity that is sensory, purposeful, and sometimes physical. It gives us a window to open up in ways that are non-linear, floating the line between the fictional and one’s biography. It allows us to dance between the verbal and non-verbal.

As human beings, we were created to create. This plays out in our careers, our families, our hobbies and interests. It is crucial that our creating never stops, especially after the diagnosis of a form of dementia. While creating, we must be cognizant of what holds special interest for each person, what causes them to become engaged, interested, and curious.

Creative Engagement plays out in many different ways, and its success is often determined by the value it brings to any one particular individual or community while participating in the activity. In the big picture, it can change our community, much like the work Anne Basting cultivated with The Penelope Project and I Won’t Grow Up. On a personal level, it can change the world of an individual, their outlook on life, their joy, hope, and can connect them to others in meaningful ways. As care partners, it can change the way we see aging and dementia, becoming a stepping stone to improve the way we care for others and build our communities.

Programs rooted in Creative Engagement cause us to laugh and to smile, and sometimes cry, but they always tap into the beauty of human connection. It brings together the emotional and physical elements of our being. It does not force us to recall specific information. We can be, and we can become the person we seek within ourselves.

Creative Engagement is not just some light and fluffy feel-good care model. It has research and success stories from thousands of individuals across the globe. The evidence behind the use of creativity cannot be ignored. So let us engage with one another using our creativity, our imagination, taping into the beauty of our humanity.

Seeking a Better Way

On a September morning, while attending a meeting with other aging and dementia professionals, I was having a conversation with someone from one of the local care communities. We talked about how she has to work within the guidelines corporate sets in place, from the way her staff dresses, to the programs they provide. I was saddened by what she was telling me, having experienced this before while I was still working as a Life Enrichment Specialist. Later, during the formal introductions, this individual went on to talk about how wonderful it is that her community is a person-centered community. A reaction happened inside me, how contradictory these two moments are, one talking about how corporate dictates the life for people they likely have never met, and the other, a care model that only works when each individual is involved. It was clearly a marketing tag line, not the model of the community. It makes me ask the question, where are we going with our care communities? Is this the experience we want our parents, grandparents, and even ourselves to enter into when we need care and support? Do we want our home to be like a hotel, with college styled brochure and sales pitches, but no longer living a life that feels to be ours? In a world where authenticity gets a spotlight, where “YOLO” is still a phrase we use and hear, how can we help others live in an authentic, beautiful, joyful way, that even until the last moment of breath causes the laugher and freedom of “YOLO?”

My grandmother’s doctor told my parents when my grandma was moving into a skilled care community that, “this is as good as it is going to get.” Over the last 10 years, I have come to see the truth of her statement, and my heart sinks. As a professional care partner and educator, I have made it my mission to help turn path we are heading down. Will you join me?

Not all care communities are simply a sales pitch, in search of great financial abundance. Some are doing beautiful things, and are living saints to those in their care and for their families. Some are visionaries, creatives, and disruptors in an industry in distress. We have work to do. Lots of work! Where do we start? We cannot change everything overnight, nor are the robotic marketing models going away anytime soon. We can start by loving those we care for, that is to say, will their good, and desire a life for them that is filled with awe, joy, hope, and connection. If we don’t desire life for another in that way, we cannot make an impact. We must do small things with great love. We can then open up our own heart to see what we believe, understand, and seek. It starts by seeing the person, then understand the fullness of their trials and triumphs, hopes and dreams. We must let go of ideas such as individuals with dementia cannot also be “active seniors” or ”abled-bodied?” Each person that I have encountered throughout my work has proven this idea inaccurate. Finally, we can seek out further education, both from those we serve and the research. A blend of the two is crucial, for one without the other only helps us standstill.

So, love, serve, understand, and work. Work for better care and support for those in need right now, for your family, for your future self. Escape the carousel of marketing tag lines, of robotic care, of complacency, and be free and bold to enter into creativity, joy, and hope. We must become visionaries. We must not only state and train, but implement and grow. If we can dream a better reality for our communities of care, we can take action steps towards making that dream a reality. It will take time, courage, commitment, and vision. Seek out those around you who dream of a better way of aging, partner together, and the impossible will become possible.

“At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done–then it is done and all the world wonders why it was not done centuries ago.”
― Frances Hodgson Burnett, The Secret Garden

Museum Access Programs and Beauty

There is something special about museum access programs for individuals with dementia and their care partners, family, and friends. These programs are part Memory Café part Support Group, rooted in joy, connection, learning and hope (not unlike the improv group I wrote about last time.) This past week I was reminded of my first experience with the museum access programs. When I first heard about Meet Me at MoMA I was encouraged by what the program was able to uncover with the participants, and the model has remained a core inspiration for my work and how I look at art engagement. It is through these programs that we are reminded of the beauty of creativity and community. They show us we can still learn, grow, imagine, and laugh with dementia. They remind us we are more than our ability to recall information.

All over the world different types of museums and community centers have developed programs, not only individuals with dementia, but also for those with low vision, families, older adults, and people with all types of abilities and needs. These programs can often go unnoticed by many of the organizations’ patrons, yet without such programming, are our museums truly living out their mission and vision statements? The visual art world is surpassing the performing arts, though they are equal in their importance and impact. I encourage you to take some time this week to see what community access programs are offered around you and see what it would take to form a program if one does not exist. If you work in a care communities or with individuals who may not be able to get out into the community to participate, get creative and find ways to bring elements of the experience each individual. (I have developed a program for such situations that you can use if you reach out to me.) 

Growing research is supporting arts and health, and program like Meet Me at MoMA, in informal and formal ways. They have an impact on who we are not just emotionally but also neurologically. Still, if for no other reason, we should engage in arts programs for joy and beauty alone. 

If you have ever attended a dementia arts access programs you may have stories of the beauty of these programs. A group gathers, sometimes already friends, sometimes strangers. With a museum educator, a volunteer or two, and the other participants, the group enters into the gallery. They pass walls filled with art and maybe other patrons of the museum until they reach their destination, a work of art that will soon spark conversation and story. As the group sets up and settles in, the museum educator gives some background the piece, shares a personal connection, and asks the group about their thoughts. From silence to laughter and joy the group engages with the work and with each other. Breakthroughs don’t happen every time and with everyone, but through this process, individuals who no longer speak, open up and finding new ways to communicate their story with the group. The time passes with each artwork visit before the group gathers for a moment of socialization before heading on their separate ways. As the day, week, or even month passes the artwork and participants names may be lost, but the emotion of the day will linger.

Improv and Dementia

For many, your first introduction to the idea dementia and improv was likely via the beautiful work of Karen Stobbe and Mondy Carter thanks to their Ted talk from 2015. Through their work they have sparked curiosity and joy, showing us the basis of creativity, flexibility, and how to enter the world of dementia. They gave us guidelines and made the connection between dementia and improv. 

Helping us deepen the work of Karen and Mondy we discovered the DementiaRAW Method and the Silver Dawn Training Institute founded by Tami Neumann and Cathy Braxton. With their book, Start with Yes! we learned exactly how to become better partners in care by using the basics of improv to help us enter the world of dementia. With the CDCS certification, we have a beautiful action step no matter what your professional or personal title may be. 

I have noticed a trend leaning towards how we as partners in care (professional or personal) can help individuals live well, with dignity, joy, and support by using improv. But what can it do for those living with the diagnosis? How can improv be healing for an individual with dementia? How can improv be both a moment of play and support?

Last month, I had the great pleasure of attending a workshop hosted by The Contemporary Theater Company, partnering with Home Care Assistance of Rhode Island to offer a 4 session program, Improv for Dementia. We gathered as individuals with dementia, care partners, care professionals, and theatre artists, spending our time together playing and SEEING each other, supporting each other, and learning more about how we all fit into this world. Christopher Simpson, the Artistic Director of the theatre, lead us through a few exercises, some of the standards that one might find in acting classes or rehearsals, but with the lens of our group’s purpose and needs, helping us become relational with one another. 

After a short break what started to look like a standard improv group became something much more powerful. For a moment we became a support group in play, showing our humanity and our desire to be in community with others, seen, heard, acknowledged. Our common thread of dementia became just that, a common thread. Not an “issue” to fix or something to try to hide. We followed the desire of one of the participants to take the group into a place they needed to navigate that moment of their dementia journey. We found ways to share our personal story of dementia, care, struggle, and loss through the improv platform. It gave us both security and vulnerability, allowing us to leave our time together in a special place. We may attend support groups and rant, cry, laugh with our loved ones about our experience and trials, but rarely is it given a non-linear place of the Both/And, spent with others who seek to find joy and playfulness on this journey. Rarely is it given the freedom it had to explore life in a new way. 

As we enter a new school year, a new season, a new month let us explore and learn more about how we might be able to use improv groups as support groups, memory café themes, and intergenerational programming.