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:
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, email@example.com
Our Memory Care program at Ebenezer now has a name – Dimensions. Dimensions has five building blocks:
We have gathered best practices in each of these realms and are giving our sites the tools they need to implement them effectively and consistently.
I chose the name Dimensions not just because it sounds like the word dementia, but because of all the things the word demands that we think about, such as . . .
The person with dementia has many different dimensions
We can’t assume that what we see or hear or assume about a person is all of what is there. We must be curious, patient and respectful as we work to discover the length, breadth and depth of each person’s history, personality, preferences, sense of purpose, habits, idiosyncrasies, hot buttons, skills (yes, these people still have skills) and strengths. Their long-term interests and passions need to be encouraged. These people still have a sense of humor and a need to laugh, even if that doesn’t seem obvious.
The spiritual dimension
Did you know that some Native American cultures believe that persons with dementia are doing important spiritual work—communicating with spirits at a level the rest of us cannot understand. I love the inspiration this idea provides. It spurs me to work hard to create more and more calm in our Ebenezer environments.
Imagine how we might honor and reward care partners and caregivers if we all agreed that persons with dementia were indeed doing the most important spiritual work on the planet! Imagine the environments we would build for these folks! Imagine the walking paths, the sense of peace and purpose, the accessibility of nature.
The spiritual dimension is indeed another dimension of the person to consider in order to give them the care they require. What moments in their life do they hold as sacred? When do they feel most at peace, most at one with all things? Where have they found solace during hard times in the past? It is important to ponder these questions, search for clues, and to ask the individual, if they are able and willing to respond to them.
The point I am making is part of a theme I often remind myself and all those whom I train on various dementia care topics: People with dementia are PEOPLE, first and foremost. They have needs (to be filled) and quirks (to be enjoyed) just like the rest of us. There are things that make them laugh (to be discovered and used as often as possible). They have likes and dislikes (to be respected) good days and bad days (to be tolerated) and they have courage and resilience (to be admired and emulated).
A person with dementia NEVER stops being a person.
With thanks to Megan Carnarius, author and nursing home operator, for the insight on Native American beliefs.
~ Marysue Moses
imensions Program Coordinator
If you have ever surfed websites of senior housing options, I bet you have frequently run into the term “person-centered care” which we owe to Dr. Thomas Kitwood, a British physician who focused on the importance of remembering that a person with dementia is first and foremost a PERSON with particular needs, challenges, strengths and preferences.
Cannot expect persons with dementia to think like we do
It is also due to Dr. Kitwood’s brilliant work that nurses are no longer trained to try to orient persons with dementia to reality, e.g., “No, no, Mrs. Jones, it’s 2017 now – actually your mother is dead, and the farm has been sold!” Thank goodness for Tom Kitwood! He helped us understand that we cannot expect persons with dementia to think like we do. As I’ve heard nursing home operator and author Megan Carnarius say, “We need to cross to their side of the street.” People with dementia simply cannot come over to ours. We need to give them responses that make sense with the way in which they understand the world.
Dementia expert Elion Caspi encourages us to also think about dementia care as “relationship-based care.” If we do not maintain relationship and genuine connection with persons with dementia, trust wears thin. As a result, it becomes challenging for persons with dementia to accept the care they need.
Lost in the grief
It is completely understandable that care partners are exhausted. They often get caught up in the grief of losing the precise relationship they had with their loved one before dementia was part of the picture. All too often, people become angry and bitter, even to the point of saying things such as “Alzheimer’s is worse than death.” That is a direct quote from the despondent husband of a wonderfully clever woman; let’s call her “Pam,” with whom I worked for some years. What a heartbreaking pronouncement from her husband! At this point, Pam still loved to share opinions and insight, sing Broadway tunes, reminisce, walk, dance, and hold hands.
A person is NOT their Alzheimer's disease any more than a person who has cancer is their cancer!
Those of us who have had family members with dementia or other progressive diseases do understand from whence that sentiment arises. However, it is ultimately not a helpful one. Nor is it accurate. It implies that we might as well give up on a person who is still very much alive. This could not be further from the truth. A person is NOT their Alzheimer’s disease any more than a person who has cancer IS their cancer. The person, an intact spiritual being, is still there, though many of their needs have changed dramatically. We do our loved ones a disservice if we refuse to rise to the occasion of their increased needs.
Maintain connections along the way
There are many gifts to be gained by accepting where the person is at, through each and every phase of their dementia experience. There is connection to maintain all along the way. How we connect will vary with different types and different phases of dementia, but in general, smiling, eye contact, gentle touch and approach, curiosity, acceptance of where the person is, conversation about things that are meaningful to the person, sharing laughter, singing, enjoying simple pleasures, giving compliments, promoting calm, validating the person’s feelings, doing things just the way the person likes, making things easier for them, reminiscing, having fun together, sparking creativity, enjoying humor….well, the list of what can be done to maintain a healthy, nurturing relationship goes on and on.
Responding to the world from an earlier developmental time
In short, we can treat the person like a PERSON, and remember that even though this person is losing skills, even though this person may enjoy and indeed benefit from things that children like, this person is still an adult who is simply responding to the world from an earlier developmental time. This person still has strengths and skills we must actively encourage and appreciate in order for them to have a meaningful life.
Language is powerful
Did you notice that I’ve been using the term “care partner” rather than “caregiver?” Language is powerful. When the relationship between a person with dementia and someone caring for them is viewed more as a partnership, what’s implied is that both persons have something to give. Think about it…What might persons with dementia still have to offer us, their care partners?
Some bonds remain unbreakable
They can give valuable input as to what they like and what they don’t like. They can lend us wisdom from past experience; they can share memories of olden days, with humor and perspective. They can inspire us with their courage and resilience. They can give us love. In this process, we may be surprised at how flexible our own capacity to love may become. Even in the late stage of their dementia, our loved one may remind us how some bonds remain unbreakable. Caring for persons with dementia may give us more patience and more appreciation for wordless communication and for life than we’ve ever known.
We are in this together
Thinking about our relationship as a partnership will help make us more open to a person’s participation and input. We just might respect, value and love this person all the more. We are not the same as this person, and we have each been impacted by dementia and changed forever in vastly different ways, but surely we are in this together.
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
As the holiday season is firmly upon us, I find I am thinking a great deal about my mom, Margaret Coleman Moses, who lived with dementia for over a decade. I woke up yesterday morning, in fact, with an image in my head of a steaming cup of tea in one of my mom’s china teacups. It was lovely, like she was greeting me first thing in the morning with a cup of tea in hand (which was not her habit, but she well knew I was fond of that British custom!)
I like to remember one of the last times I saw Mom, out in Denver. This was several months prior to that morning when she slipped away from this life, after having a warm bath and being tucked back into bed by her caregiver at the nursing home. When I saw her that time, Mom no longer spoke very much, and I don’t think she knew my name at that point…but I remember well how she cocked her head and looked at me so intently and how her eyes just completely filled with love. It was overpowering. It still takes my breath away each time I go into that memory.
She knew I was someone close to her, for sure. And she gave me a great gift in that moment. That love clearly did not depend on words exchanged or on her knowing my name or on me saying the right thing. It was just there. I have often heard it said that persons with dementia never lose the ability to give or receive love – proof of that fact was handed to me in that moment. There is still a person in there with whom we can connect!
I would not be in the role I have now at Ebenezer if it weren’t for my mom. I would not have the passion I have for the topic of dementia care, or the inside knowledge of how dementia challenges a family as well as the person who is at the center of it. I would not have the same drive to ensure that the activities we do with our residents at Ebenezer are just that, done WITH them, not AT them, or FOR them, and to ensure that the care we provide is truly caring, empathetic and validating.
Here’s another thing about my mom, which I did not learn until the day she died. I had been involved in the theater for many years – I was in many plays in high school, majored in drama in college, worked for a theater company for over 15 years, and helped found a theatre-based training company, before Mom started showing signs of dementia. In the early afternoon on the morning she died, there I was, on the plane to Denver to join my sister and brother. Slouched in my seat and deep within my raw grief, I opened a newspaper that had arrived in the mail that morning, sent to me by a cousin, from my mom’s home town. I wasn’t sure why my cousin sent this issue, and after scanning the first page, I nearly put the paper away. Instead, I turned the page to find a big picture of my mom as a high school student, along with a young man. It was from a high school production of a play! That young man grew up to be a beloved doctor in town, who had recently passed away -- hence the article. So there she was, my mom, in a play! You see, I NEVER knew she was in a play! This was an astounding fact for me to learn! I felt so ashamed that I had NEVER asked her if she had been in one, and that I had assumed she was too shy to do something like that.
Another gift from Mom! Never assume you know what people have done or not done! I have used this story when I am training about activities and the importance of asking questions about residents and using their life story to create meaningful and purposeful activities.
These gifts are ones I will still remember long after the wrapping paper has been thrown away this year! Thanks, Mom! I couldn’t do this without you!
(FYI - for tips on handling the holidays when a loved one has dementia, please see my earlier post from December 2015)
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to. Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning. This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose. I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage. I might mix up medications, so please keep an eye on that. I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal. Multitasking is way too overwhelming for me. My speech may become vague as I struggle to remember the details of whatever you are asking me about.
It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have. There are many! In this early phase, I still have a sense of humor. Please help me find opportunities to laugh. Ask me questions you know I can still answer. (Do not quiz me to remind me of what I am forgetting.) I still have the capacity for ideas and decisions, so be sure to give me some choices. Relationships are still important to me. Please reassure me that you care. Hold my hand and speak to me with warmth and kindness. I still have interests. Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree. Give me reminder notes if those still work for me.
In this phase, I will most of all need compassion and understanding. I am still a person, a person whose spirit is experiencing considerable anguish at the moment. Please avoid arguing with me, and do whatever you can to make things easier for me. But please try not to scold or embarrass me in the process. If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!” Please don’t take it personally if I get mad at you or seem to blame you at times. I do this because I am scared. I have a sense that I am losing control. If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you. I so need your love, support and your patience at this time. Thank you for asking me what I need!
--- Marysue Moses, Ebenezer Dementia Care Program Coordinator
This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.
When persons with dementia move into a memory care community, it can take from several weeks up to three months or more for the person to adjust and feel comfortable with the new environment and routine. From my personal experience working with memory care residents at one assisted living for over a decade, I would say the average amount of time before the person settled in was no longer than a month. Your loved one may be angry for a while, and may seem more confused than before. This is a perfectly normal phase. Rest assured, things will improve in time. Here are ten tips to help ease the transition:
_It will probably come as no shock to caregivers out there, that persons with dementia can at times be very stubborn, critical or emotional. They might start yelling or become physically aggressive. Upsets can escalate quickly and become extreme. The person might refuse to let you, the caregiver, assist them with personal care. It may seem to you that your loved one is responding “inappropriately,” and that this reaction is out of balance to the situation. Why must they get so upset over what seems to you to be something quite insignificant? Why won’t Mom let you comb her hair, for example, when she’s always been so particular about how she looked?
The first thing to realize, and it can be tough for family members to reframe things in this way, is that the person with dementia is not acting “inappropriately.” They are simply responding the only way they know how, given that their brain is damaged. Mom won’t let you comb her hair because she is trying desperately to communicate a need. Maybe her head hurts. Maybe the feel of the comb going through her hair is tingly and unpleasant. Maybe she simply wants to do it herself and not feel like she is being treated like a child. These feelings and/or sensations will be more important to Mom than that fact that Mom used to pay more attention to her appearance, which Mom is not at all concerned with right now.
Mom’s brain is no longer wired to think the way she used to think. But Mom is still a person, with very real needs. It is our job as caregivers to do our best to identify what the need is, and to respond in such a way that the person feels soothed and validated, rather than aggravated.
Some common causes of these so-called “catastrophic reactions” are as follows:
Tips for responding effectively to these situations:
--Marysue Moses, Ebenezer Dementia Care Program Coordinator
Choosing a senior living community can feel like a daunting task. To help narrow down your options, ask these questions first:
What type of senior housing do I need?
Not all senior housing is the same. There are many options to consider depending on the level of care you need:
Deephaven Woods is part of Ebenezer. We offer a wide variety of senior living options in Minnesota – including memory care, independent and assisted living communities and nursing homes. Each is designed to help you live more independent, meaningful and secure lives.
What happens if I need advanced care?
If your care changes, make sure your senior living community is equipped to handle your shifting needs. Can you easily move from an assisted living to a nursing home? Is a hospital nearby if you need it? Can you keep your existing physician? Will your medical records easily be transferred?
Not only does Ebenezer offer all types of senior living communities, but we are also affiliated with Fairview Health Services This means you have a wealth of resources at your disposal, from top-notch physicians to the latest in Alzheimer’s research and care. Each day we are working to improve the quality and safety of patient care, which is how Ebenezer and Fairview became pioneers in the secure transmission of electronic health records between nursing homes and hospitals.
Where do I want to live?
Moving into senior housing brings exciting changes, like choosing the exact area you want to live. Do you prefer the familiarity of your current location and want to find senior housing in your own community? Or, does it excite you to move closer to loved ones who may live in a different area? Perhaps you are interested in experiencing a new neighborhood altogether?
There are more than 67 Ebenezer independent living, assisted living, memory care and nursing homes in both urban and rural settings throughout Minnesota. Since 1917, we’ve been Minnesota’s leader in memory care and assisted living. For close to 100 years, our compassionate caregivers have been members of your community. Now, we invite you to be a part of ours.
Schedule a tour today to learn more about the vibrant senior living options at Deephaven Woods!