In grad school about a decade ago, I ran across an article that provided guidance, inspiration and reassurance for exhausted dementia care partners. Is there anyone out there caring for a person with dementia who is NOT exhausted at this time of year? If so, please send me YOUR insights to share in a future blog!

Wayne Ewing’s article, “Land of Forgetfulness: Dementia Care as Spiritual Formation,” recounts his journey as caregiver for his wife who was diagnosed with early onset Alzheimer’s disease at age 55. Wayne quickly realized that his skills as a clergyman and educator, while relevant, were not the entire package of what he needed in order to cope with the change in his “Beloved,” as he calls her, and to navigate the transformed waters of their relationship.  

Wayne considered the wide range of needs that both he and his Beloved now had to contend with. He figured them out one by one and in time, Wayne discovered that he could meet his Beloved in the present moment. As they walked together in a pine forest near their home, he marveled at and shared in the delight and awe she expressed at the beauty around them.    

This led Wayne to begin to ruminate on the Alzheimer’s Association’s Ten Warning Signs of Alzheimer’s disease. Using an impressive knowledge of many religious traditions and spiritual scribes, he imagined how all those (scary and depressing sounding) warning signs might be looked at in a new light, the light of spiritual formation.  He handily spun that list into Ten Steps in Spiritual Formation, pointing out the following:  
Memory Loss…St. John of the Cross described “the sum of all perfection” as “the oblivion of the world.” How many people on earth use meditation or other practices precisely to clear the mind of details that keep us away from enjoying the here and now?)
Problems with Language…Mother Teresa said, and religious mystics have agreed, that “God is the friend of silence.”

Disorientation of time and place…Meister Eckhart wrote that “the soul who knows God knows God above time and place.”
Poor or decreased judgment…All religions counsel us to abandon judgment.  For example, the Bible tells us to “Judge not, and ye shall not be judged” (Matt. 7:1).

Problems with abstract thinking and problem solving…In many spiritual traditions, this is viewed as a stepping stone towards an increased ability to dissolve ones thoughts and create calm. 
Misplacing Things…can be seen as a sign of losing attachment to material possessions… (I plan on reminding myself of this one the next time I misplace my phone!)

Changes in mood or behavior…Nicolas of Cusa notes that these changes are required in order to gain spiritual wisdom.
Changes in personality…Nicolas of Cusa also maintains that personality changes are to be expected if one is to grow spiritually.
Loss of initiative…Meister Eckhart’s advice was to be passive in order to allow the holy to be active within us. 

Wayne’s thinking reminds me of what I have learned about a common Native American view of persons with dementia:  that they are actually in communication with the spirit world at a level that none of the rest of us can understand. This way of looking at dementia intrigues me. It supports my certainty that even though a person with dementia may be quiet, important spiritual work of some kind is going on, deep inside.

I thought I would wrap up the blog right there.  But no.  Here goes.
My beloved husband died of cancer over 5 years ago. He was on hospice for a little over two months, and bedridden for just a week and half. Phil was an extremely smart, hyper-witty, charming, snarkily funny guy. He had been an actor since he was 6 years old. He could be very loud on occasion.  It was amazing to see Phil become so quiet in his last weeks.  While it didn’t occur to me at the time to use the term “dementia” for anything that was going on with him, it was several  years later that I suddenly realized that he actually was exhibiting dementia symptoms in his last 10 days: trouble with language and motor skills, disorientation, nonsensical speech, lack of initiative.  For a time, our verbal communication consisted of him whispering the last few words of whatever I had just said to him back to me. But one day, he departed from that pattern. When I said, “I love you,” he replied, “I love you too.”  How one little word can mean the world!   That was the last thing he said to me, or anyone.  I had assumed I’d be playing all sorts of his favorite music as the end drew near, but instead, it felt to me like he was very busy inside (and things were probably noisy enough). It seemed that the spiritual journey he was on required his entire focus and attention.  I think (and hope) that was the right call.

Wishing you and whomever you care for a calm and bright new year!
-- Marysue Moses, Ebenezer Dimensions Program Coordinator, mmoses1@fairview.org
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Wayne Ewing’s article, Land of Forgetfulness: Dementia Care as Spiritual Formation” is published in Religion, Spirituality, and Aging: A Social Work Perspective, by Harry R. Moody, The Haworth Social Work Practice Pres, 2005.
Thanks also to Megan Carnarius for information on the Native American view of dementia, and to Mirjam Berger and David Cobb for insights related to Wayne Ewing’s article. 

According the CDC, one in three adults age 65 and older falls. In fact, falls are responsible for the most injuries and fatalities among seniors. And unfortunately, a fall can mean the end of independence . . . or worse; more than 25,000 people die each year from falls.
The good news is that falls are not a normal part of aging, and can be prevented! Since the place you are most likely to fall is in your own home, here are some simple steps to keep you safe

1. Be aware of your surroundings. Remove all clutter from your pathways—including throw rugs and electrical cords. Arrange furniture so you always have a clear walking path.
2. Install sturdy handrails on your stairs. In the bathroom, install grab bars in the shower or tub, or use a shower seat with a hand-held shower head.
3. Rearrange the contents of your cupboards to be within easy reach—knees to shoulder. NEVER stand on a chair to reach something high.
4. Keep it bright. Use night lights in your bedroom and be sure to turn on the lights if you get up at night.
5. Take your time. Don’t rush to answer the phone or door, walk carefully.  If you feel dizzy, stand up slowly. It’s also a good idea to sit on the edge of the bed before standing up when you first wake up.
6. Wear well-fitted non slip shoes with low heels and good support. Don’t walk in your socks. Make sure laces are always tied and short enough to prevent tripping
7. Have your doctor or pharmacist review all medication you are taking—even over the counter drugs, vitamins and supplements. Some medications have side effects that can lead to a fall. Always keep a list of your current medications.
8. Don’t lift or carry anything that’s too heavy. When unloading your car, or putting away washing make several trips with small loads.
9. Ask your doctor or therapist for safe exercises that build strength and improve balance.
10. Take care of your feet! Trim toenails and check feet every day for sores, bunions, calluses, warts and numbness. If your feet hurt, you will be less active—which could increase your risk for falls.

 
If you do fall, see your doctor right away, even if you are not hurt, you should find out why you fell to keep it from happening again!
For more information about preventing falls, please click here http://www.fvfiles.com/520270.pdf to see a comprehensive checklist about preventing falls, visit https://www.fairview.org/overarching-care/home-care-and-hospice/fall-prevention, or call 612-721-2491 for more information.

Integrity.  That word has a lot do with truth and honesty, things that can get a bit murky in dementia care, as we work to validate feelings and honor the way a person with dementia views the world.  At our recent Mission Breakfast event at Ebenezer, I was asked to prepare a story that related to Integrity, one of our five core Ebenezer values.  To tell the truth (ahem), I wasn’t quite sure (at first) that I could spin the story I really wanted to tell (yes, I chose the story before being assigned the value) into being the perfect fit for the value of Integrity, but I believe I’ve come around!
 
Integrity in dementia care has lot to do with honoring and celebrating who each person is, at their core, connecting with their passions, skills, accomplishments and dreams.  
 
At one of our sites there was a resident named June. She was British, and I learned she had had a career as an opera singer. I was so excited to meet her and so hoping I could get her interested in the arts project I was involved in at her site -- using Shakespeare, Poetry and Music to engage residents and stimulate their memories around the theme of love. I visited with June one day in her room. She told me about her singing career, about touring overseas, performing in Prague and many other capitals of Europe, even singing with Pavarotti, I think. Lying down in her bed as we chatted, June was most cheerful, hospitable and animated. Clearly she loved reminiscing about her career. She told me she had also performed onstage in many musicals. I asked her what parts she had played.  In her Northern British accent, she proudly replied:  “I played Laurie in Oklahoma!  But y ’know,” she continued, “My voice isn’t what it used to be, and I really don’t sing much anymore”. 
 
I could hardly wait to see if we could get June out to attend the sessions that were part of our 6-month long project. She didn’t make it to the first couple, but the third one was all about music, and she was feeling well enough to come along. Bright-eyed and very engaged throughout the session, June was often the first person to give a response when Jeanie Brindley-Barnett of MacPhail Music Center asked the group a question.  Near the end, Jeanie played the song “People will Say we’re in Love”, the famous love duet from Oklahoma.  Then, Jeanie very casually invited June to sing it. 
 
June did not hesitate. Her voice was creaky and warbling at first, but she put her heart into it and when she hit those high notes near the end of the song; her voice simply soared across the room, pure and free. Everyone in the room had an experience of the singer she once had been. Memory care residents and staff applauded heartily when the song was done. I looked over at Jeanie and saw that she, like me, had tears sliding down her face. I remember thinking in that moment that our project was already a complete success as far as I was concerned, based solely on what had just happened, because one resident had that opportunity to share her talent in front of a group again.
 
Unfortunately, June did not attend our other sessions. She came to just one, wasn’t feeling well, and had to leave almost immediately. Her health was deteriorating. In fact, she died before the project was completed.
 
A month or so after she passed away, I arranged to meet with June’s daughter. I was curious to hear more about June’s career, and thought there might be some recordings or programs in existence that might come in handy for the documentary film we were making about our project. (The day that June sang was not a day we had the film crew on site!) Her daughter let me know that June’s memory, once she got dementia, had actually….expanded…the extent of her career.  In fact, June had never toured the capitals of Europe. She had not sung with Pavarotti. She had done a lot of community theater and some non-professional light opera performances!  June did indeed play Laurie in Oklahoma, but she did not have the career she had described to me and many others in some detail, except in her imagination, fueled by dementia!   
 
I admit I was a little disappointed at first, finding this out, but then I thought, wow, who wouldn’t want the kind of dementia where you remember your fondest dreams and expectations for yourself as reality?!  Given the choice, I think that’s a kind I’d sign up for!  There’s integrity in there for sure! 
 
-Marysue Moses, Ebenezer Dimensions Program Coordinator

​What is Godly Play?
     GODLY PLAY™ is an imaginative, Montessori-based approach to religious formation developed by the Rev. Dr. Jerome W. Berryman and used by many faith groups around the world. It is a creative and playful way of bringing stories of faith to life on an experiential level. It uses two and three dimensional figures to tell the story in a vivid way and then invites – through wondering questions - engagement with the story. Traditionally, this method is used in the faith formation process of children.
     In 2015 Lois Howard wrote an inspiring booklet “Using Godly Play with Alzheimer’s and Dementia Patients.”  In it, she outlined her experience of using this method since 2006 in Lexington, Kentucky. Her writing inspired chaplains at Ebenezer to follow in her footsteps. In March and April of 2018, our team (including chaplains in training) engaged in two days of hands-on training in Godly Play with Minneapolis Godly Play trainer Susan Mallison.  Her enthusiasm and curiosity about bringing stories alive with older adults in varying stages of dementia was instrumental to our success. Another amazing supporter is Jon Lundberg, President of Ebenezer and Fairview Post-Acute Care. An avid woodworker, he created several wooden figurines that are being used in the process of telling Sacred Stories. We are also very grateful to all donors who through Ebenezer’s Foundation generously supported this project.
Sacred Story
     We decided that our goal was not to help participants remember the stories but to facilitate a way for each person to connect with the Sacred while also being in community with each other. Our context in larger long term and senior care settings in Minnesota is one of growing cultural and religious diversity. We wanted to create a welcoming and inclusive atmosphere for everyone while drawing on different sacred stories. We called it “Sacred Story.” What we discovered continues to amaze us.
     Initially, we anticipated 4-6 people would come and listen to the story and engage with it. To our surprise, at one of our communities we regularly have between 15-20 participants, at another 6-10. Not everyone knows or remembers the others’ names all the time. We introduced name tags so that residents could see and hear each other’s names frequently. Calling each group member by name is a crucial aspect of this model, to create community and to be known by each other (and the Sacred) by name. Interestingly, one of the residents whose Alzheimer’s disease had progressed significantly was so delighted to see her name in writing. For her, to be in that circle of friends, to be known and to recognize her own name was the most meaningful part of this day’s Sacred Story time. As we sing together and then hear, see, and feel a Sacred Story, we open up new and different ways to experience the Divine. Wondering questions invite each participant to connect with the Sacred in their very own way. Residents may recall memories that resonated with the stories being told, such as reconciling with a sibling, welcoming back a child into one’s family, or helping a stranger in need.
My people
     The stories we tell include the parable of the Great Pearl (which touches on what may be the most important thing in one’s life, and what it feels like to give everything away), the Ten Best Ways to live by (traditionally known as the Ten Commandments) and the story of the Exodus (a story about suffering, liberation, freedom, divine intervention and joyful celebration).
     Recently when I told this last story, using our “desert bag” filled with sand, I was deeply touched by the reaction of one resident who kept saying: “This is my story, these are my people.” We then spent time together speaking about the resident’s childhood and family. The smile and warmth reflected on the resident’s face as we talked was enlivening.
     When we conclude our Sacred Story time, we go around in the circle and offer silence, thoughts or prayer, deepening on each resident’s desire. Those who voice prayers out loud frequently pray for their families. I hope that many families know that despite their sad experience of no longer being recognized as son, daughter, spouse or friend, their family member may well be reaching out in an unseen way, and praying for them.  

Many older adults want to stay in their home as long as possible. There is an assumption that staying in your home means you are independent, but the reality is it can often lead to loneliness and isolation. The health effects of long-term isolation are measurable and include: chronic health conditions, depression, anxiety, dementia and even premature death. One study reported the negative health effects of long-term isolation are equal to smoking 15 cigarettes a day.
 
Loneliness is on the rise overall, but those most affected are those 80 and older according to a 2016 study.
 
Older adults who are most at risk are often:

• living alone
• living with untreated hearing loss
• living with mobility impairments
• no longer driving or have limited access to transportation
• recently experienced the loss of a spouse, friend or partner
• caregivers

 
The best remedy for loneliness is staying connected. Staying connected, interacting with others, and staying socially engaged with friends and your community can help keep fight loneliness and the health risks that are associated with it.
 
How can a move to Senior Living help fight loneliness?
 
When people move into a senior living community, the older adults often tell us, “I wish I would have moved sooner.” And their family members tell us, “We’ve seen our loved one blossom in the last few months!”
 
Here’s why:

• Senior living brings people together. Coffee socials, happy hours, and even chatting over lunch helps to grow those meaningful relationships that increase health and longevity.
• Senior living provides opportunities for purposeful engagement in daily life. Our residents like to volunteer, help out their neighbors, and share with friends.
• Senior living offers spiritual programming in the community, and often offers transportation to local services. Research shows that regular attendance at faith-based services (no matter the denomination) improves life expectancy.
• Intergenerational programing brings older adults and young children together to work on projects together, enjoy each other’s company, and learn from each other. The young and the young at heart both have so much wisdom to share.
• Senior living provides regularly scheduled fitness classes to help maintain physical mobility. It’s also an environment where you don’t have to feel judged or insecure about using adaptive devices (like walkers or wheelchairs) you may need to help you stay more independent.
• An accessible van means you can easily get out and about, to do shopping, visit restaurants, and more. You stay connected with the community at large, and continue to do the activities you love.

 
We invite you to visit York Gardens. Speak with our residents to hear how their health and their lives have changed for the better after moving to senior living.
 
For more information about loneliness and isolation, the AARP Foundation offers its online resource Connect2Affect. There you can find a self-assessment to determine your risk factors and tips on how to stay connected. Click here to take your self-assessment. Resources that informed this article include Government’s Role in Fighting Loneliness by Emily Holland, as published in the Wall Street Journal, and the Blue Zones Power 9 ® by Dan Buettner.

When a person with dementia asks you a question for what seems like the 29th time in a row, how do you respond? 
Have you found yourself saying (or almost saying) anything like this:   

• “Don’t you remember?”
• “Not again!  I already told you!”
• “I’ve told you a hundred times already!”

You may have learned from experience that that those types of responses don’t get you very far. They simply serve to increase your own frustration and impatience as well as that of your loved one. Rather, try responding in a calm, reassuring voice, as though it is the very first time you have answered the question.  

Physical changes in the brain can result in a person with dementia no longer being able to remember that s/he is repeating themselves. These changes also make it difficult for a person to stop a repetitive motion such as rubbing hands together, or tapping on a table.  Anxiety and tension, (byproducts of the disorientation and memory loss of dementia) can translate themselves into repetitive motions or questions which others may experience as annoying.  

Whatever a person with dementia does that appears “wrong” or “inappropriate” or “unnecessary” to our brains and our way of relating to the world is actually an expression of a need. That’s why I like the phrase “behavioral expression” so much better than the term “behavior” when referring to the challenges that can arise when someone lives with dementia. “Behavior” often implies judgment, that the person is being “bad," which encourages us to assume that if the person only tried a little harder, they could control that incessant tapping, stop asking those repeated questions, and avoid using those four letter words that they never used before!  The fact is that the person could only exert control over those things if they could STOP having dementia. This is, alas, too much to ask.

We must have patience and compassion for the seriousness of a broken brain.  It’s up to us whose brains are in better shape, who have better control over our actions and responses to others to take a deep breath…and focus on helping the person out with whatever need is making itself known, however it may be expressed.     

A hungry person might ask “What’s for lunch?” over and over. For this person, giving them a piece of paper with the upcoming “menu” written down may satisfy the question. In addition, getting the person involved in some aspect of meal or table preparation might be an effective distraction.  

If a person with dementia is in pain, they might rock, pace or otherwise move rhythmically to express their discomfort.  We must be sensitive to the comfort–related needs of the person, and do what we can to alleviate them. Sometimes, giving a repetitive task like winding yarn or folding towels can be a comforting distraction for the person.   

Sometimes people may be bored, craving a sense of purpose and meaning. Repetitive movement can be reflective of things the person used to enjoy doing on a regular basis. If your loved one asks you, “What do I do now?” they are in effect asking you to involve them in something that will give them a sense of pleasure, peace, or usefulness.  Put something of interest in their hands. Ask them for help with a task. We all need to be of use.  This does not stop when we get older or when we develop dementia. An inability to take initiative is usually part of the dementia progression. Do not assume that your loved one is beyond having interest in things that have been important to them. The person may be at a loss as to how to access or activate that interest. In that case, it falls to us to remind the person of their accomplishments and adapt past interests into activities they are able to enjoy now.  

It is a good idea not to discuss plans with a person (appointments, visitors, outings) who has very short-term memory loss.  Knowing an event too far ahead of time can cause extreme agitation (as well as, you guessed it, repeated questions) for a person with dementia.  This tendency will vary, of course, person to person, but it is necessary to monitor and adapt to the changes as dementia progresses.  

Sometimes the need expressed is an emotional one. The person may be fearful, sad, or feeling insecure. That emotion could come out as a repeated question or as a physical expression, i.e., pacing, as the person attempts to express what is inside.  Listen for the emotion behind a person’s question or behavioral expression, and respond to that, i.e., “You seem worried.  I’m right here if you need anything.  “We will be together all day.”   Putting on soothing music that the person likes and using gentle touch may provide further reassurance.  
If the person seems to need a hug, tell him or her that YOU need a hug, and they will very likely oblige you with one.  Then they get to feel that they are giving you something that YOU need.  We all feel better when that happens!

--Marysue Moses, Ebenezer Dimensions Program Coordinator

--Information in this post is partially based on material in Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White 

Few processes are more stressful than deciding upon the best place to move a loved one when it is determined that a move to memory care is the best option.  Keep in mind that when this decision needs to be made, it is often critically important, not only for the well-being of the person with dementia, but in order to maintain the health and safety of the family member who is their current care partner.
If you are in the process of making this potentially agonizing decision, here are some questions to ask yourself, and others, as you tour and consider various possibilities:
What does the environment feel like?

• Is it cozy? Is the atmosphere comfortable and homelike?   
• How’s the temperature?  Are there pleasant smells?
• Are there items of interest on the wall to attract attention and engage the residents?  
• Is television on, with no one really engaged, or is there some soothing music happening if there is not a scheduled activity going on?
• Do you see residents out and about, chatting together?
• Do you see staff interacting warmly with residents? 
• Do residents seem calm and content, overall? 
• What sorts of interventions are tried here should a resident become upset?  For example, is  Aromatherapy in use?  (see http://www.haaromatherapy.com/  to learn more)

What can you learn about the staff?

• Are staff members trained in dementia care on a computer, or do they get plenty of in-person instruction?
• How much training does the front-line staff get upon hire and yearly on different dementia topics?   
• Are staff warm and friendly towards visitors?
• Do staff members seem to take their time around residents, or are they rushing?
• If you have the opportunity, away from residents, ask a staff member, “What do you like about working with persons with dementia?”
• Ask how staff members are trained to deal with challenging situations, such as a resident pounding on the door and wanting to leave? (Encouraging answers would include “We are trained to validate the need behind whatever the resident is feeling, to comfort, to reassure, and to redirect them to something that we know is meaningful or pleasurable for them” and “When possible, we take someone who wants to leave this part of the building for a short walk in another part of the building, or (weather permitting) even outside.”
• What is the ratio of staff to residents?  Is memory care currently full now?  How many memory care residents will there be when it is full? (Does this sound like too big of a crowd for your loved one to manage well around?)  

What is the level of activity and engagement?  

• Is there an activity staff person specifically assigned to the memory care community? 
• Are activities ever scheduled after supper?  How about on the weekend?   If you get an activities schedule, look to see if the weekend schedule is as full as the weekday schedule.  
• Ask to observe an activity.  Note the level of engagement of the participants.  Is the activity being done FOR the residents, or (preferably) is there lots of interaction and participation, because the activity is being done WITH the residents?
• How often do staff engage residents during the down time they have between cares?
• How much is music a regular part of the life of the community? 
• Are there any service projects being done?
• Do Assisted Living residents and Memory Care residents ever come together and interact?   
• How would my loved one be made to feel useful in this community?

Does the well-being of residents seem to be a priority?

• Observe the relationship between front line staff and memory care residents very closely. The quality of life of your loved one will be dependent on the quality of the relationships s/he has with the staff who interact with them the most.
• Ask how consistent the staffing patterns are. Will your loved one have the same person helping them for a certain number of days in a row?  Consistent staffing patterns are a very good sign, as are caregivers who have worked at the site or in memory care for many years.   

What support is available here for family members?

• Is there a Care Partner Support Group that meets onsite or nearby?
• How often are educational presentations given about dementia or related issues? 
• How often will I be invited to attend a care conference concerning my loved one?    
• Has this site had experience with different types of dementia (such as Lewy Body, Frontotemporal, and Vascular)?   Even if your loved one has Alzheimer’s disease, the most common type of dementia, you want to know if the site has experience and training on working with different types of dementia.   

This is by no mean a complete list of what you will want to ask, but it’s a start.  Two more ideas:

• Ask the person who is touring you, “What are you most excited about currently in terms of what is going in in your memory care community?”
• Think about your loved one, their personality, their habits, their interests and accomplishments, and ask specific questions to determine how all of that might be catered to at whatever sites you are considering.

Good luck in your search!
-Marysue Moses, Ebenezer Dimensions Coordinator

I am grateful for all the inspiration I have received over the past year, from persons living with dementia (many of them, I must add, functioning very well.  For instance, Paulann Gordon has been living with dementia for the past 5 years. She is now in the middle stages and continues to function well. She has chosen to live her life as an advocate, speaker and author. Paulann has published a booklet sharing her experiences living with dementia. Vascular Dementia – An Inside Perspective, is available on Amazon. Her story provides valuable insight and encouragement for those living with dementia their caregivers.
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Whether we work with persons with dementia, or have loved ones with dementia, we must never forget that the wholeness of the person’s spirit is still there, even when it looks like it isn’t. What are the person’s strengths?  What makes them smile?  What lights them up? What interests and passions can still be reached and celebrated?  For me, answering these questions is of primary importance in caring for our fellow human beings who happen to have dementia.
I am thankful that I am surrounded by people who are deeply committed to caring for those living with Alzheimer’s and other dementias. From devoted care partners whose closest loved ones have dementia, to front-line staff at Ebenezer sites whom I have observed slowing down and taking time to connect with residents, and activities staff who exhibit tremendous energy and enthusiasm to make life easier, friendlier, more pleasant and more meaningful for those residents with whom they work, I am grateful. I have been inspired by occupational therapists, dementia trainers, receptionists, chaplains, administrators, nurses, executives, donors and professional artists, all of whom in some way are making a profound difference for persons with dementia. 

In my personal circle, I have been inspired by many friends and family members.  It’s reassuring to remember support is available. And there are those who are passionately devoted to caring for those with dementia. If you feel, like I do, that the news of late is oh, a bit challenging to take in, it helps to remember what is going well in our own sphere in order to maintain and cultivate resilience.  It’s part of self-care, which is an essential practice for anyone out there caring for a person with dementia.
HappyThanksgiving to all.
--Marysue Moses, Dimensions Coordinator, Ebenezer. mmoses1@fairview.org, 11/21/2017

At the end of June, I had the opportunity to experience the first ever North American Dementia Action Alliance Conference in Atlanta. This was an amazing event, the best and most moving dementia conference I have ever been to, and it scrambled my brain in the very best way. 

The conference organizers included persons with early-stage dementia in their planning. There were many speakers at the conference who also had dementia, who spoke movingly and clearly about horrendous experiences with diagnosis (example: essentially being told by the doctor to “get your affairs in order”, and just prepare to curl up and die) the stigma that accompanies the diagnosis, the despair the ensues, and the long climb back into hope, purpose and connection which now fills their lives.

There were 30 persons who attended the conference who are currently living well with dementia, and doing amazing things. Yes, they run on adrenaline in conference situations and there is another side to their lives that conference goers like me can only imagine, i.e. the utter exhaustion at the end of the day, the confusion that comes and goes, the losing one’s way in a large hotel, the forgetting a portion of what happened this morning. 
Here are 10 things I learned: 

1. While I am the Dimensions Coordinator for Ebenezer, a large and reputable organization which cares for older people, many of them with dementia, I am NOT a dementia expert.  People who have dementia are the real dementia experts, and we all, including me, need to listen to them more.  
2. People with dementia are very smart, especially about dementia.  Having dementia is not to be confused with mental retardation. (I assumed that I understood that already, but it was only after hearing this panel of people who happened to have dementia and who were all brilliant, articulate and expressive did I really get it.)  People with dementia use their intelligence to compensate, to reach out to others, and to express their truth.   
3. People with dementia do not appreciate the automatic assumption that they are “suffering” with dementia.  Yes, they may be struggling to stay connected to who they were, but they are not steeped in misery 24/7.  As one person very succinctly put it, “I have Alzheimer’s, but it doesn’t have me”. 
4. We must change the lens with which we view dementia. Persons with dementia would prefer to be seen as “living with a chronic disability” rather than “dying from a fatal disease”.  We encourage people to give up when we frame it in the latter way.  People often have MANY years left once given a diagnosis.  A pronouncement of their “timeline” may not serve them well. No one has a crystal ball.  
5. People with dementia are creative and flexible.  Many have found ways to compensate for changes in their cognition; they use tools, routines, technology and strategies to support themselves.    
6. People with dementia are keenly aware of our response to them; they’re sensitive to the mood on our faces and the look in our eyes.  If we are kind and open, and willing to meet the person where they are at, that means the world to them.  If we only pity them, or turn away because we don’t know how to respond, that hurts.
7. People with dementia have passion: passion to make a difference in the lives of others with dementia, passion to rise above the fog that sets in, passion to choose to LIVE, passion to mentor others with dementia (visit DementiaMentors.org for more information). Their passion fuels them to live their purpose.  They may find that purpose in creating art.  One participant at the conference spoke of losing her ability to speak early on in her dementia process.  For a time, she was suffering intensely.  She felt devastated, and without hope. A smart friend got her into a clay workshop and she started making pots.  Now, her sense of purpose is fueled by making astoundingly elegant, museum-quality pots.  And by the way, she has completely regained her ability to speak.
8. People with dementia are fierce advocates.  They are resilient.  They do get tired of course, partially because they spend a lot of energy making sure other people are comfortable with their illness. 
9. People with dementia are ordinary people.  They do not want to disappear.  They try to forget about dementia so that it doesn’t define them.
10. People with dementia want to live a life with a sense of normalcy, and to live fully, for as long as possible.  This includes the right to make mistakes once in a while.  Do people without dementia have the right to make some mistakes?  

So, there’s a lot of food for thought here for those of us who care for people with dementia at any stage.  I have to wonder…What if every resident with dementia at Ebenezer had the advantage, at the start  of his/her diagnosis, of experiencing the abundance of support, encouragement, mentoring and community that now exists for persons living with an early stage-diagnosis?

Might they be doing a whole lot better now?  I think they might.  But it is never too late to support people in finding a sense of purpose and meaning, and never too late to treat them with the compassion and respect they deserve.  It is with a renewed and profound sense of purpose that I will continue to learn about dementia from the real experts, and to advocate for them, all along the way.     
 
-Marysue Moses, Ebenezer Dimensions Coordinator, mmoses1@fairview.org