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

With thanks to Megan Carnarius, author and nursing home operator, for the insight on Native American beliefs.  
~Marysue Moses
Dimensions Program Coordinator
moses1@fairview. org  

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. 

Relationship-based care
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.
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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                                                                                     ​

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:

1.  If your loved one has limited short-term memory, it may be helpful to reassure them that staying in this new place is “temporary”, i.e., “just for the summer”, “just for a few months”.  Telling them, “The doctor wants you to stay for a little while” may work if the person has a very good relationship with their doctor, and if they tend to place their doctor on a pedestal. “Stay for supper. You have a reservation, and the meal’s already paid for” might also be an effective approach.        
2. Introduce your loved one to other residents and staff as though these people are already your friends.
3. Avoid explanations like “You’re here so they can take care of you.” A person with dementia may not think that he or she is sick.  Likewise, “This is your home now!” is probably the least comforting thing you can say to a person who feels out of place.  Instead of trying to argue with the person, focus on empathizing with their feelings, then distracting them.  “I know it’s strange to be in a new place. Hey, I hear they have a lovely patio – let’s find it!”  Or, “Of course you don’t like it yet. You only just got here.  See how you feel in a few days! ” 
4. “I’ll help you get used to it” might be reassuring to your loved one, especially if you actually follow up on that. Attend activities with your loved one, eat a meal with them and make conversation with their new “friends”.    
5. Decorate your loved one’s room with items that define who this person is. You want staff to be able to know something about them the minute they walk in the room.  An example might be a person whose hobby was making quilts. You could put a beautiful quilt on the bed or on the wall, and bring her sewing box with fabric pieces, yarn, thread (no pins) patterns, measuring tape, etc.)
6. Create familiarity in your loved one’s room by bringing their favorite chair or other significant familiar possessions.  Avoid photos from their recent past, (unless the photos are of grandchildren). Pictures of their mom and dad, or of you when you were a child, will be more relatable.  You could even write the names of the people under each photo to give staff members a good starting point for making conversation. 
7. Hang items on the wall at 5’ or below, wherever your loved one’s line of vision is. They need to be able to see and touch their belongings.
8. If allowable, distinguish the door to their room or apartment with their name or signature, hung about 4 feet up.  
9. If allowable, hang an 8 x 10 photo of when your loved one was much younger to the side of the door or place it in a Memory Box Cabinet.  This is a wonderful tool to help people with dementia identify where they live.  Many persons with dementia think of themselves as much younger than they actually are. Staff members will also benefit from seeing this photo, it reinforces that your loved one is a complete person who has lived a long and full life.  
10. Lastly, a tip for your benefit:  Please do not bring in items of great value that you would regret losing. Wedding rings often fall off fingers and get lost. Some residents with dementia are fond of giving things away. My own mother threw most of her valuable jewelry in the trash at one point.  Some families replace a wedding ring with a similar piece of costume jewelry in order to avoid losing that heirloom. Others simply promise their loved ones that they will keep it safe for them.

Many of these wonderful tips are taken from the wonderful guidebook, Moving a Relative with Memory Loss, by Laurie White and Beth Spencer, available through Whisp Publications.

There are many different ways that families communicate with their loved one about a move to memory care. The most successful plan will be designed to meet your loved one’s needs. Some family members don’t tell the person they are going to move, knowing this could create undue anxiety. Other families are completely honest with their loved one about the need for “more care” and they have their loved one participate in the move. However you decide to handle the communication, make sure all family members are on the same page, and keep in mind the following guidelines:  
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DON’T keep reminding your loved one they are moving if it makes them anxious. You might try telling them once, in a matter of fact manner, to see how they take it. If it stresses them out to talk about a move, don’t keep bringing it up.
DO reassure the person that they will be getting more help. Because of their dementia, they may bring up the same concerns or fears over and over. Let the person voice their concerns, and be understanding in your replies, i.e. “I can see why you’re worried about that. We’ll figure it out.”
 
DON’T pull your loved one into the details of the planning and packing process. Don’t ask them to decide what to bring and what to leave behind. With memory loss, decision making and any process with multiple steps will present challenges. If you don’t already know which objects or knick-knacks are most important to your loved one, spend time observing what things around their home they use and enjoy on a regular basis.
DO work with a move manager. A great example comes from a family who had one daughter take mom out for a morning of shopping followed by lunch, while the other daughter was assisting the move manager. The move manager set up the new apartment to look almost identical to the room in the old house where mom spent most of her time. When they brought mom into her new apartment, she knew something was different, but she felt very much at home right away.
 
DON’T over-pack. Memory care apartments are small for a reason – large spaces with lots of “stuff” can be overwhelming and anxiety-inducing for people with memory loss. A smaller space with a manageable amount of items in it eases the mind. Again, pay attention to what your loved one actually uses throughout the day and bring just what he or she needs. If your loved one misses something, you can always bring it later.
DO consider leaving the TV at home. As memory loss progresses, TV shows can be hard for people to follow. They can also be upsetting, as they can be confused with reality. Bring music, family photo albums and art or photography books instead – they are more therapeutic. Consider leaving valuables behind too. A person with dementia often picks something up, puts it down, and then forgets where it is. Save yourself the heartache of a missing wallet or priceless family heirloom by not bringing it to the new memory care apartment.
 
DON’T get started too late in the day. Try to get the move done so that your loved one is settled in their apartment by 2 or 3 p.m. at the latest. As the day progresses we all get tired, but a person with dementia will not cope as well as the rest of us. Enlist more moving help if you need the extra hands to be finished by 2 p.m. – it will make the transition smoother.
DO remember that people usually adjust quite well to their new environment, but that this could take around 2-4 weeks. Be reassured in knowing the staff in the memory care community are there to help your loved one settle into a comfortable routine. Because the new environment (not only the apartment but also the programming and the structure of the day) is designed to fit the needs of a person with dementia, you will start to notice your family member more at ease than they were before the move. When your focus returns to your relationship with your loved one, rather than the details of day to day caregiving, you will also be more content, knowing you have made the right decision.

 "Mom, I don’t feel safe in the car with you.”
“Dad, I think your eyesight is getting worse.”
“I don’t think you should drive anymore.”
 
If you’ve said, or had these thoughts while driving with an older adult close to you, it may be time for a conversation.
 
How do you know when driving is becoming more difficult for seniors? Look for these signs:

• Health issues – As we age, it is normal to experience vision/hearing loss, slower reaction times and memory issues. These changes also signal it’s time to reevaluate how safe seniors are while driving. It’s also common for seniors to take multiple over-the-counter or prescription medications each day. These could negatively impact driving. 
• On the road – Does your loved one act unpredictably behind the wheel? Sudden lane changes, drifting into other lanes, braking/accelerating quickly and failing to use turn signals are all signs that it may be time to discuss driving habits.
• Damage – New damage on his/her vehicle, like dents or scrapes, might be an indication that driving has become more difficult. Also look for damage to the exterior environment. A broken fence, dents in the garage or a dinged mailbox may be indications that your senior is having a hard time navigating the vehicle.

 
There are steps you can take now to help make the transition easier:

1. Start the conversation – No one likes change, so it’s never too early to start talking with seniors about their driving habits, comfort behind the wheel and alternative transportation options. You might be surprised to find they aren’t confident while driving and didn’t know how to bring it up. Or, you might be met with resistance and a defensive attitude, which is completely normal. For a list of conversation starters, visit seniordriving.aaa.com.
2. Brush up on your skills – Much has changed since seniors first learned to drive. Roads have become more congested, traffic laws have changed and cars have become more complex. Luckily, many organizations offer safe driving courses catering specifically to seniors. You may also receive a discount on your car insurance after completing the course. To find a course, visit aarp.org
3. Driver Assessments – Still meeting resistance? It might be time to call in outside help. Twin Cities-based Adaptive Experts offer driver assessments for seniors. Their team includes occupational and physical therapists who are also licensed driving instructors. They conduct behind-the-wheel driver evaluations and then make safe driving recommendations.
4. Talk to your doctor – If this information is best delivered by a medical professional, ask your loved one’s doctor to discuss the specific medical conditions that may lead to hazardous driving.

For more information about how  resources in your community that will help your loved one live as independent, healthful, meaningful and secure, contact Ebenezer at 612-672-7262. 

One of the most common types of dementia, Lewy Body Dementia causes problems with thinking, movement, behavior and mood. There are two types of Lewy Body dementia:
1.  Dementia with Lewy Bodies.  This is when people FIRST have a decline in cognition,
      then, within a year, develop movement problems.
2.  Parkinson’s Disease Dementia.  This is when people FIRST show symptoms of a
     movement disorder, then, after a year or more, cognitive symptoms arise.
After the first year, the symptoms of the two types look very similar.  
Symptoms include:  

• Cognitive fluctuations.  There can be unpredictable changes in the person’s ability to be alert, awake and attentive.  Interestingly, unlike Alzheimer’s disease, memory problems may NOT always be evident when someone has Lewy Body dementia.
• Depression, apathy and paranoia.  The person might exhibit intense fear about the future.
• Hallucinations (the person sees, hears, smells, tastes or touches something that is not there.  This may or may not be frightening for the person.
• Delusions (strongly held false beliefs).  For example, a person with Lewy Body dementia might at times think that a loved one is not who they say they are, or that the loved one has been replaced by an imposter.   Do not try to argue with a person with any kind of dementia!  You will never win the argument!  If a wife, Mary, doesn’t believe that George is her husband, George could say, “George sent me.  He couldn’t come today, but he wants me to make sure you’re all right. Can I help you with anything? ”  
• Sleep disorders.  Persons with Lewy Body dementia sometimes physically act out their dreams, making violent movements while asleep, or falling out of bed.  These people often are excessively sleepy in the daytime.
• Muscle rigidity, a frozen stance, a shuffling gait and tremors, especially in hands.
• Difficulty swallowing or a weak voice
• Dizziness, fainting, constipation and sensitivity to heat and cold

These symptoms can be extremely challenging for the person as well as for their caregiver.  What can help?   A person with Lewy Body Dementia responds well to patience, minimization of stress in the environment, simple tasks, regular exercise, consistent schedules and routines, and adequate sleep.
How should you respond to a person’s hallucinations or delusions?  Tune in to the person’s emotions. Determine whether the hallucinations are upsetting for the person, or not.  If the hallucination or delusion causes no danger or upset for the person, there is no need to do anything except validate the person’s perception or belief, i.e. “Huh.  That’s interesting.”   If the hallucination is upsetting, respond to the emotion expressed:  “I can see why you’re upset.”  Agree, sympathize, and validate BEFORE offering reassurance, i.e., “Of course you’re annoyed by all those little people running around.  But I’ve got the situation under control.”  You can offer the person empathy and concern:  “I’d feel that way too, if that was going on in my room.  Let’s go for a walk, they’ll go home soon.”  Then, clearly and firmly, give the “little people” some direction, i.e., “Okay, kids, you’ve got ten minutes to get out of here.”
A variety of professionals can help manage the person’s disease.  Medication may be helpful in some situations.  Therapists (physical, speech, and occupational) can help with movement issues, swallowing and vocal problems, and can help to identify ways daily activities can be made easier for the person.  Palliative Care Specialists can help manage constipation, sleep disorders and behavior problems.
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If you are the primary caregiver for someone with Lewy Body dementia, make sure you have a team of professionals in place, and make sure you find respite for yourself as needed.
 
--Adapted by Marysue Moses, Ebenezer Dementia Care Program Coordinator, from Lewy Body Dementia Information for Patients, Families and Professionals, NIH Publication No. 13-7907, September 2013

There’s a lot of confusion out there about what is Alzheimer’s and what is dementia.  Is there any difference between the two?  Is one worse than the other?  People sometimes assume there is no difference, or they get the false impression that when dementia gets “really bad," it becomes Alzheimer’s disease.  That’s false, and very misleading.  Dementia is a very general term, and is not a disease, in and of itself.  It’s a syndrome, which simply means a collection of symptoms. In the case of dementia, the symptoms are evidence of a decline in mental functioning.  Memory loss is usually the first thing we focus on when we start to list those symptoms, but it’s very important to recognize that dementia causes people to lose an important number of skills (language skills, motor skills, judgment, the ability to plan, to name a few), things that most people take for granted every day.  As a result, people with dementia need a lot of help to manage their days.  
 
There are many different diseases and conditions that can cause the symptoms of dementia.  Alzheimer’s disease is one of them.  In fact it is the most common cause of dementia; experts say it is responsible for 50 – 80% of the dementia that we see.
Dementia is not considered to be a normal part of aging, even though the chances for developing it increase as we age.  By the time we reach the age of 85, 50% of us have dementia. Experts recommend that exercise is the single best thing you can do for your brain.  Other lifestyle choices that may help ward off dementia include a healthy diet, getting plenty of mental stimulation from purposeful, pleasurable activities, quality sleep, successfully managing stress, trying new things, and maintaining social connections and interactions.
         --Marysue Moses, Ebenezer Dementia Care Program Coordinator