aranoia is one of the many possible challenges of dementia. It’s a blaming belief or suspiciousness that a person with dementia holds onto, despite explanations or lack of proof of this belief. 
 
Sometimes people with dementia will accuse others in the household of stealing something that they themselves have misplaced. It is very tempting to try to convince the person otherwise when they are are sure that something has been stolen.  But arguing doesn’t get us very far when a person has dementia.  It usually causes stress, frustration and upset for all concerned!  It is more productive to “cross to their side of the street” in order to see things compassionately, from the person’s point of view.  Sandra McGurran, social worker with Fairview Home Care and Hospice Senior Services, recently shared with me the idea that “Compassion = Empathy + Action”.  This concept can be applied here.  
 
Here are some DO’S and DON’TS to guide you in giving a compassionate response in these sorts of situations.  
 
DO NOT TAKE OFFENSE on behalf of the accused person.  
DO LISTEN to what is bothering the person with dementia, and VALIDATE their feeling, i.e., “That’s not a very nice feeling, to think someone would just take something from you.”
DO RESIST THE URGE to get into an argument with the person.
DO ACKNOWLEDGE the upset. “I can see why you’re upset. I would be too, if that happened to me.”
 
DO NOT offer a lengthy opinion or a list of reasons why they shouldn’t be upset.  
DO OFFER A SIMPLE IDEA. “I wonder if your blouse is in the wash.” Or… “Maybe your wallet was left in a pocket?”
DO BE HELPFUL and action-oriented. “I will go check the laundry room.”  “Let’s check your pockets”.
DO ASK QUESTIONS. “Let me get this right.  What color was that shirt? 
DO BE REASSURING. “Don’t you worry.  We will get to the bottom of it.”  ‘I’m sure we’ll find it.” “I’m good at finding things.”  
DO SHIFT THE FOCUS.   “Let’s have a cup of coffee; coffee always helps me think more clearly!”  Be sure to offer something you know the person will be interested in! 
DO DUPLICATE items that are repeatedly misplaced.  For example, if a person often loses their wallet, obtain several of the same kind to keep on hand.  Make copies of cards that are in the original, so you can stuff the replacement wallets with those.   
 
But what if YOU are the person being accused directly?  This can certainly be tricky. 
It’s hard not to feel hurt by such an accusation.  What can you do?
DO LET THAT ROLL OFF YOUR BACK in favor of remembering that your family member is functioning with a brain that is doing the absolute best it can possibly do under the circumstances of dementia. 
 
DO TRY IGNORING THE ACCUSATION.  Instead, simply validate the person’s feelings, i.e., “Oh no! Your favorite blouse is missing?  Of course you’re upset. That’s a beautiful blouse!”  
Maybe this will distract the focus from YOUR culpability, or maybe not.  Depending on the level of the person’s upset and suspiciousness, you might need to step away and if someone else is available to assist.  In that case, try, “I can see you’re upset with me.  I’ll go see if Ann will help you look.”       
 
DO THINK AHEAD.  For things that are frequently misplaced, it could be helpful to establish and clearly label a home base in the room where a purse can hang or a wallet can sit.  You might initiate a routine of checking that spot every night together.
 
Finally, it can really help in any sort of frustrating situation with a person with dementia to MAINTAIN A SENSE OF HUMOR AND GOOD WILL towards the person.  Is there a way you can turn that uncomfortable situation around and actually give the person a compliment?  Maybe you can remind them of advice they once gave you! “You know, Mom, I remember you telling me when I lost stuff that I would forget my head if it wasn’t attached.  You were so right!  You also said that lost things usually turn up if we are teensy bit patient!  That was always so helpful!” 
 
For more info on coping with paranoia as well as other challenges that can arise with dementia, see Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, by Beth Spencer and Laurie White. 
--Marysue Moses, Ebenezer Dimensions Program Coordinator

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 measureable 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 an Ebenezer community. Talk 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.

Apathy. It’s one of the approximately 500 symptoms you might well find under theumbrella term of dementia. According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness.  For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought.  Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.  

Initiating activity involves planning, organization and motivation.  Planning can be complicated, involving lots of steps.  For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming."  When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.  

To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time.  We have to remember that the changes of dementia are disease-related, and brain-based.  It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us.  The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have.  We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.  

Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy.  These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:

1. Check your emotions – do your best to maintain a positive tone.  An angry annoyed tone will be understood by the person with dementia, even if your words are not.  
2. Practice patience. People with dementia may need extra time to process information and to respond.   
3. Develop activity interventionsthat are based on the needs and interests that have motivated the person in the past. Be sure to modify past interests to current abilities. 
4. Keep things simple. 
5. Do not rely on verbal cues and communication alone. When you think about creating activities that might spark interest for someone, consider things you can show the person, music or sounds they can listen to…What might you just put in their hands, without any words? See what happens!
6. Introduce multi-sensory stimulation one sense at a time, so it’s not too overwhelming. 
7. Start an activity together, (folding laundry, putting away dishes) standing side by side. Let the person continue the activity on their own.  
8. Plan personal care at the person’s best time of day.
9. Provide just one or two choices to limit overwhelm. 
10. Remember that a bored expression doesn’t necessarily mean that the person derives zero benefit or enjoyment in the activity. Remember too that apathy can come and go.  Look for the openings, and use those opportunities to best advantage. 

This blog is based on information taken from a publication called Partners in FTD Care(8, WINTER 2018), available through the Association for Frontotemporal Degeneration, 267.514.7221, www.theaftd.org    
--Marysue Moses, Ebenezer Dimensions Program Coordinator

1. The situation could be more demanding than you thought.
Your aging relative or friend’s need for help has probably been coming on gradually, as they’ve become less capable of managing the demands of daily life–like keeping up the house. "You’ve been to see your parents and they worked hard to get it ready for a visit,” Cindy says, “but you may not notice that
newspaper stack is getting higher and higher, and the recycling isn’t going out. When we’re going to our parents’ home, that’s just the status quo. We’re sometimes not realizing it’s getting less clean and less organized."

It may be hard for them to admit to you they can’t mow the yard anymore or lift the ladder to clean out the gutters. So be prepared, once you’ve committed to start helping a senior, to discover that they may have let things go more than you knew.

2. You may need to set some realistic boundaries.
“A common thing that happens is that someone’s in the hospital–maybe it’s mom’s first fall–and she’ll tell the social worker: ‘My daughter can stop by every night after work and bring me meals.’ It’s not uncommon for someone in the hospital to say they have family that can do all this without talking to the
family,” Cindy says. “The daughter will say: ‘I live 30 miles away on the other side of the cities. It’ll take me an hour to get there after work. I can’t do that.’ What a parent sees as realistic may not be the same as reality.’ "

Especially if you’re juggling a career and your own family on top of helping a parent stay in their own home, you may find yourself spread a little thin.

“There’s a point where you become resentful of having to do that,” Cindy says. “You need to figure out how much you can do without creating negativity in your life."

​3. Your senior’s new situation may reignite old family tensions.
What’s happening with your parents in their later years is emotional enough, but coming to a consensus about what to do can be rough on even the tightest of siblings. Cindy describes a typical scenario: “We all know how our family operates. There’s nothing really happening, but there may be underlying tensions that naturally exist. Maybe the oldest son sees the younger son as always getting away with
things he can’t. What happens under stress or in crisis is those things blossom.” Even if you agree to be the main caregiver at the start, you may end up feeling like your siblings aren’t pitching in enough. They may feel like they aren’t getting enough of a say. It’s easy in these situations to revert to old childhood
patterns and bring up old hurts. Cindy or one of our other Caregiver Assurance advisors can help you manage a family conference to work through some of those issues.

4. Caregiving can take a toll on your work life
Cindy knows a thing or two about that. Not only has she helped coach people through this, but she has firsthand experience. She helped take care of her parents and her husband’s parents. “What happens is, you spend your whole lunch hour calling people, then you go back to work and you’re waiting for
those callbacks. If you’re trying to do a report and making calls for your parent, your 8 to 5 schedule might become 8 to 7. Or you say, ‘I’ll do it at home,’ and you’re sitting there doing that report at 11 at night. How much sleep do you get?”

“There I was, caregiving for my in-laws and my parents, all four of them, trying to keep track of doctor appointments, who was needing services, who needed home care,” Cindy says. “And I was holding a mid-management position in a hospital. It wasn’t realistic that I could juggle it all.”

5. You’ll need to learn things you never needed to know before.
At your age, you may not know how often an older person should get a colonoscopy. Adult day care may be a complete mystery to you. And you certainly haven’t spent a lot of time investigating how to buy a Medicare plan. “You’re going to run into a whole lot of things you’ve never dealt with before,” Cindy says. “Things that even a college educated person is going to have difficulty with: Looking at your parent’s financial situation and how to deal with that. Finding financial planners or attorneys, somebody who
understands elder law. That’s why you’d connect with a program like us. I know some things myself, and I know several reputable firms in the Twin Cities.”

6. You’re a giver, so beware of neglecting yourself.
People who take on the role of caring for an elderly relative may naturally be the type of person who thinks of everyone else’s needs before their own. But that can last only so long. Cindy paints a picture of life as four glasses of water and a pitcher: “Your glasses might be your husband, your son, your 14-year-old-daughter and your parents. You keep everybody’s glass full, but where’s the pitcher for you? People keep pouring, and pretty soon the pitcher’s empty.” Keeping your own glass full is something the personal advisors at Caregiver Assurance can help with. “There was a time when it wasn’t accepted that you would put yourself first,” Cindy says. “It’s not about putting yourself first, but doing your caregiving AND knowing how to take care of yourself.”

7. Caring for a senior may be the most rewarding thing you’ll ever do.
That reward could be as simple as spending more time withyour loved one and finally hearing the story behind that one photo in the dining room. It can be the peace of mind knowing that they’re safer when you check on them every day. It can be giving back to somebody who has given so much to you. “My dad never wanted to go into a nursing home,” Cindy says.“Feeling that I was honoring his wishes, I look back at it and I feel lucky.” No matter how frustrating or rewarding it is to help an aging loved one, you don’t have to do it alone. “There isn’t a classroom you can go to and learn all of this,” Cindy says. “Whatever the journey is, there’s help. If you have to make a right turn, there are people who are able to help you along. That’s what we’re trying to do here at Caregiver Assurance.”

For more information about what Caregiver Assurance can do for you, visit fairview.org/Caregiver-Assurance or call 612-672-CARE (2273) to speak with one of our Caregiver Advisors.
©2018

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

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

Our Memory Care program at Ebenezer now has a name – Dimensions.  Dimensions has five building blocks:

• Wellness through person-centered, relationship –based care,
• Innovative training
• Engagement,
• Supportive environments,
• Family education and support. 

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
​mmoses1@fairview. org