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 
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Paranoia 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 convinced that something has been stolen.  But arguing doesn’t get us very far when a person has dementia and Alzheimer's.  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 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.

  Those living with dementia can feel an even greater isolation as many of their once familiar surroundings no longer resemble anything of what they remember.  Alzheimer's specific communities are shown to provide greater support to conditions that can change very rapidly.
 
Loneliness too 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
• living with dementia alone
• not living in the right community
• 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 and memory care communities bring people together. Coffee socials, happy hours, and even chatting over lunch helps to grow those meaningful relationships that increase health and longevity.
• Senior living and memory care communities provide opportunities for purposeful engagement in daily life. Our residents like to volunteer, help out their neighbors, and share with friends.
• Senior living and memory care communities offer 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.
• Senior living and memory care communities provide 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.

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There are many different ways that families handle communicating 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 even tell the person they are going to move, knowing this could create undue anxiety. They bring the person to the new space once it is all set up and say, “Surprise!  We found you this great new place to live, Mom!” This is usually followed by one of the advantages.  “It’s closer to me; I’ll be able to visit more.”  Or, if the person is worried about money, “It’s more affordable!”  Of course some people are not too fond of surprises, so this approach will not necessarily work for everyone. 
Other families are completely honest with their loved one about the need for “more care” and they even have their loved one participate in the move, i.e., carrying a few things to the new space on his or her walker. But telling a loved one about this too far in advance could backfire, making the person feel like they are being “kicked out” of their current home. Once the person moves into the new place, they may keep packing everything up, as they are still fixated on this idea that they have to move. 
Do's and Don'ts 
However you decide to handle the communication, make sure all family members are on the same page, and keep in mind the following guidelines:  
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. This is a very good idea! 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 priceless family heirloom by not bringing it to the new memory care apartment. If your loved one insists on having a wallet or purse, expect that these will be lost and you may need to resupply them in a jiffy! Having some extras ready to go for staff to grab is not a bad idea. Fake IDs and obsolete credit cards can be placed into them. But it might simply be enough to reassure the person that “everything is paid for” or that you’re handling all the bills. You can even write this information down for the person—staff can make multiple copies to give to your loved one when questions arise.
 
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 is 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.
Finally, remember it is futile to try to argue the person out of whatever feelings they have before, during, or after the moving process.  The brain of a person with dementia is going to rebel against your logic and may become extremely frustrated and upset as a result.  Be respectful of your loved one’s feelings throughout the process.  When the person expresses fear, or sadness, or anger, nod and be understanding. You don’t have to “fix it” for them, but it will be helpful to validate their feelings by saying things like:  “I can see you’re upset.”  “Of course you’re angry.”  “I bet I would feel that way too, if I was in your shoes.”  “It sure is stressful to move.”  “I’m sorry this is hard for you.”  “We’ll get through it together.” “I wish I could help you feel better about this.”  “I will do everything I can to help you.”  And remember to tell your loved one that you love them!
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Writing on this day before Thanksgiving, my favorite holiday, I am thinking about all the people I’ve known, loved, worked with, learned from and admired who have lived or are living with dementia.

Mary Ellen is top of mind today. She was supremely intelligent, stunningly beautiful, elegant,  well-traveled, and maintained a wild sense of humor.  As her dementia progressed, she exercised her love of rhyming more and more.  She was famous for enthusiastically blurting out, at random, “If you get to heaven before I do, just drill a hole and pull me through!”  One day as I was sitting with a small group of residents, Mary Ellen was clearly in her rhyming mood.  So I challenged her to make up a rhyme for everyone in the group.  She did not hesitate:  “Marysue, how do you do, Millie, you are silly, Dottie Dottie two by four, can’t get through the bathroom door”.  (Fortunately, Dottie was hard of hearing.)  ”Peg has a funny leg, Bernice fell in the grease, Mary Ellen is swellin’!”  

I think about Jean, who knew lots and lots of Shakespeare.  Well, she was British, so of course she did!  She spoke it simply and beautifully, better than some actors I’ve heard at the Guthrie, I swear!  When she was on hospice and just a few days away from her departure from this life, I whispered some Shakespeare into her ear.

I think about Betty, the Amazing Betty, who had been a pole vaulter in high school and college.   She used a walker now, but loved being reminded of her former skill.  She drank green tea way before it was popular.  Betty had traveled all over the world, by herself.  You could not name a country she was not absolutely sure she had been to, although a few of them she was only “pretty sure” about.

And another Betty was a wonderful pianist who could sit down at a piano and play like a virtuoso, though she might not be able to tell you who the composer of the piece was.  

And another Betty knew a ton of songs from musicals; we had a lot of fun singing them together…“Getting to know you, getting to know all about you!”  When Betty sang, it was with great joy.    

Another Betty had been an artist, quite a painter.  She also knew how to fly a plane.  She was deep, this Betty.  I remember the day she was scheduled to move out to another place.  Her needs had grown beyond what could be provided where I was working at the time.  She was not yet aware that she was to leave us that day, but for some reason she came to my office in the early morning, stood in the doorway looking right at me and said, “Have a nice life.” 

I think of Millie who danced up a storm. She and her husband had gone to ballrooms every weekend, for years and years.  Millie was in great shape from all that dancing!

I think of Eunice…fragile, vulnerable, always wearing a fashionable hat Eunice, always looking for her mother, always needing to find her.  Eunice had cared for her mother, who had lived with Alzheimer’s disease.  Eunice was not alert to the fact that she was now in the same boat.   Eunice had been an avid golfer and even had a photo of herself and Arnold Palmer together!  She was very proud of that!  And she was the most competitive Balloon Volleyball player I’d ever seen.  

I think of my mom, of course.  I see her soft brown eyes and feel the way she tilted her head and looked at me that one time I came to visit.  It was pretty late in her journey with dementia, I hadn’t seen her for a number of months and I had wondered if she would recognize me.  I could tell she maybe didn’t know my name but the love that radiated through those eyes just about knocked me over.  She wasn’t speaking much, if at all, by then, although I heard that one time she came out with an excited exclamation of “Bacon!” when she recognized the smell on her way to the dining room. 

I could go on and on, listing the strengths and passions and quirks of so many people I’ve known who have touched me deeply, who have cemented my desire to keep connecting with people with dementia and to keep working to make their lives easier and more fulfilling.   
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I have a friend and colleague who had a stroke a couple years ago.  Yes, he has some struggles with word-finding, organization, and short-term memory.  His whimsical sense of humor and his personality are delightfully present.

I am grateful for all these people mentioned here, and for many whom I have not mentioned, including people I’ve seen present at conferences who defy the stereotype we all too often latch onto when we hear that someone has “dementia.” Many folks are successfully living with early stage dementia and working hard to erase the stigma that surrounds that word.  
I am grateful for the strengths and skills that people with dementia retain.  I am grateful that people with dementia continue to be themselves.  Yes, the packaging looks different, and there are adjustments of expectations to be made on our part, not to mention theirs, but the spirit that drives people with dementia is unmistakably intact, if only one can learn how to connect with it.  If only we do not give up on them!   
 
-- Marysue Moses, Dimensions Program Coordinator 

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.  

Paranoia 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 convinced 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 feelings, 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

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 misunderstood.  
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

These tips come to you from Cindy Swanson, a personal advisor for clients of Fairview’s service.

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. Even if someone has asked for your help, they may not always like it.
“No matter what your age, your parent always sees you as their child. You’re still their little girl or boy and they want the authority,” Cindy says. “They’ve been the one giving you advice for 30 or 40 years.”
This sudden role reversal can be difficult for them, and they’re not always going to agree with how you want to do things. Though you can’t control your parents’ feelings, you can work on yours.
“Sometimes we don’t realize our own attitude coming in: ‘Oh, my gosh. I have to go over to mom’s house and I know it’s going to be a disaster.’ Instead, tell yourself: ‘I know I have to clean the house. Today’s a beautiful day. I think I’ll open up the windows and it’ll be refreshing. I can handle this.’ ”
4. 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. 
5. 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.” 
6. 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.”  
7. 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.” 
8. Caring for a senior may be the most rewarding thing you’ll ever do.
That reward could be as simple as spending more time with your 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.” 
Find out how Caregiver Assurance can give you the support and resources you need to help an aging loved one.