​Misplacing Things, Paranoia and Dementia
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 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.
 
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.

This month, I am sharing my blogspace with David Cobb, BCC, Director of Spiritual Health at Martin Luther Campus in Bloomington.  Thank you, David for sharing your insights about caring with us here!  Yes indeed, we are in this together.  --Marysue Moses, Dimensions Program Coordinator
 
The day I walked in to the Martin Luther Care Center with a big purple cast on my arm, one of our residents (I’ll call her Peg) asked me what happened. “Ruptured biceps tendon,” I explained.
 
Peg winced for a moment, then grinned mischievously. “Now you know what it’s like for us!” she said. Well, maybe a little.
 
Things I can’t do easily right now: button my shirt, tie my shoes, slice a watermelon, type. Things I can’t do at all: ride my bike, mow the lawn, carry a grocery basket; tie a tie, wear long sleeved shirts, serve communion.
 
There’s plenty I can still do, of course. And there’s little doubt I’ll be able to use my arm again. But it’s not hard to imagine how hard it is for our residents to adjust to each “new normal.” Especially when the challenges are more permanent and mind, body, and spirit don’t heal like they used to.
 
Any unexpected shift in autonomy, sense of identity, connection to others, or meaning/life balance indicates a potential source of spiritual distress. As a chaplain, I have the privilege of helping residents and their families identify their distress and develop ways to cope with the challenges they face. Some have given up a home and its accompanying sense of place, a job and their role in providing for their family, responsibility for a pet, control of the kitchen, or the camaraderie of poker night with the boys. Such losses can trigger anger, shame, despair, anxiety, loneliness, or fear.
 
I’m not happy about my injury. It’s going to take a long time to heal. But it’s making me more aware of the spiritual distress our residents feel when moving onto campus, and as their physical conditions and relationships change over time.
 
Peg asks about my arm each time she sees me now. I try not to over-share. But it reminds me that some of our residents have a spiritual need to care for others, just like we care for them. We’re in this healing and wholeness business together.
 
Hmm, maybe that’s why we’re starting to speak about being not just care-givers but care partners. I wonder how you become a partner in care?
 
--David E. Cobb, BCC, Director of Spiritual Health, Martin Luther Campus

Apathy. It’s one of the approximately 500 symptoms you might well find under the umbrella 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 interventions that 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
 
 
                 
 

Have you ever noticed how snuggling and petting a dog, or giving a cat on your lap gentle strokes seems to create a sense of calm and wellbeing?  Turns out, there is a scientific reason behind these good vibe feelings.

According to an article in TIME magazine and a 2015 Harris poll, "95% of owners think of their animal as a member of the family. About half buy them birthday presents. And it’s a two-way street. People who have pets tend to have lower blood pressure, heart rate and heart-disease risk than those who don’t. Those health boons may come from the extra exercise that playing and walking require, and the stress relief of having a steady best friend on hand.

Scientists are now digging up evidence that animals can also help improve mental health, even for people with challenging disorders. Though the studies are small, the benefits are impressive enough that clinical settings are opening their doors to animal-assisted interventions–pet therapy, in other words–used alongside conventional medicine. 
The rise of animal therapy is backed by increasingly serious science showing that social support–a proven antidote to anxiety and loneliness–can come on four legs, not just two. Animals of many types can help calm stress, fear and anxiety in young children, the elderly and everyone in between."

That is why most Ebenezer locations welcome our furry friends along with their human counterparts to our senior living communities.  We have witnessed the joy a dog can bring to the face of an elder, even a nonverbal, expressionless dementia resident. They suddenly light up and reach out for the dog.  We have also seen animals bring together residents and help forge new friendships.  It is a common denominator that people love  - sharing funny and meaningful stories about their pets. As long as pets are well behaved/good neighbors - they help bring life into all our Ebenezer homes. 
​
Until one has loved an animal a part of one's soul remains unawakened.

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

Religious and spiritual beliefs and practices are important in the lives of many of us. When we get older, we reflect back on our lives and also look forward to a sense of meaning, purpose and connectedness in aging. Some of that involves deciding what we want to hold on to or let go of.
 
So many of Ebenezer’s new residents have to engage in the process of holding on and letting go simply by moving into a smaller apartment than the home they had previously lived in.
 
“What do we do with the desk that won’t fit in? How about the Holiday decorations – maybe our daughter and son-in-law could use them for their house? What will it be like to get to know all of these other people?”
 
While this process can be quite painful, it also prepares us for a journey of holding on and letting go of other things. Which unresolved conflicts prevent us from feeling at peace? Can we let them go? Can we seek reconciliation?
 
According to a Gallop poll, the four major spiritual concerns Americans have about aging, death and dying are:

• Forgiveness by God or what one holds sacred
• Reconciliation of broken relationships
• Giving and receiving forgiveness for past offenses
• Having a blessing from one’s loved ones.

 
These important concerns can be engaged through our spiritual or religious practices. Prayer, meditation, pilgrimages, fasting, and reaching out to neighbors can be very significant religious practices at any stage in one’s life. Spiritual practices are equally diverse and may include meditation, yoga, walks in nature, appreciation of art, music, joining with others for a common purpose. In addition, writing a legacy document or videotaping an autobiography can be quite meaningful for those creating it and those with whom it is shared.
​
The magazine “Real Simple” published an article in 2005 titled “Getting to know you” by Erik Jackson. He starts off by saying: 
“Photo albums? Check.
Family Tree? Got it.
A deeper understanding of our relatives and friends?
That starts here.”
 
He then lists many questions as conversation starters or almost as an interview format that a good friend, spouse, sibling, or other loved one can ask. Some unique questions are: What is the bravest thing you have ever done? Was there one person who had a big impact on your working life, like a mentor? What are the secrets to a good marriage or relationship? What have you always regretted not asking your parents?
 
This process of making meaning out of one’s life can be a source of hope, strength and peace. It can bring us the depth of love and connection that we may yearn for. 
--Rev. Mirjam Berger
Ebenezer Corporate Director of Spiritual Health

I am grateful for all the inspiration I have received over the past year, from persons living with dementia (many of them, I must add, functioning very well.  For instance, Paulann Gordon has been living with dementia for the past 5 years. She is now in the middle stages and continues to function well. She has chosen to live her life as an advocate, speaker and author. Paulann has published a booklet sharing her experiences living with dementia. Vascular Dementia – An Inside Perspective, is available on Amazon. Her story provides valuable insight and encouragement for those living with dementia their caregivers.
Whether we work with persons with dementia, or have loved ones with dementia, we must never forget that the wholeness of the person’s spirit is still there, even when it looks like it isn’t. What are the person’s strengths?  What makes them smile?  What lights them up? What interests and passions can still be reached and celebrated?  For me, answering these questions is of primary importance in caring for our fellow human beings who happen to have dementia.

I am thankful that I am surrounded by people who are deeply committed to caring for those living with Alzheimer’s and other dementias. From devoted care partners whose closest loved ones have dementia, to front-line staff at Ebenezer sites whom I have observed slowing down and taking time to connect with residents, and activities staff who exhibit tremendous energy and enthusiasm to make life easier, friendlier, more pleasant and more meaningful for those residents with whom they work, I am grateful. I have been inspired by occupational therapists, dementia trainers, receptionists, chaplains, administrators, nurses, executives, donors and professional artists, all of whom in some way are making a profound difference for persons with dementia. 

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