Blog Posts

Misplacing Things, Paranoia, and Dementia

9/4/2018

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

0 Comments

In This Together!

2/8/2017

0 Comments

If you have ever surfed websites of senior housing options, I bet you have frequently run into the term “person-centered care” which we owe to Dr. Thomas Kitwood, a British physician who focused on the importance of remembering that a person with dementia is first and foremost a PERSON with particular needs, challenges, strengths and preferences.

Cannot expect persons with dementia to think like we do
It is also due to Dr. Kitwood’s brilliant work that nurses are no longer trained to try to orient persons with dementia to reality, e.g., “No, no, Mrs. Jones, it’s 2017 now – actually your mother is dead, and the farm has been sold!” Thank goodness for Tom Kitwood! He helped us understand that we cannot expect persons with dementia to think like we do. As I’ve heard nursing home operator and author Megan Carnarius say, “We need to cross to theirside of the street.” People with dementia simply cannot come over to ours. We need to give them responses that make sense with the way in which they understand the world.

Relationship-based care
Dementia expert Elion Caspi encourages us to also think about dementia care as “relationship-based care.” If we do not maintain relationship and genuine connection with persons with dementia, trust wears thin. As a result, it becomes challenging for persons with dementia to accept the care they need.

Lost in the grief
It is completely understandable that care partners are exhausted. They often get caught up in the grief of losing the precise relationship they had with their loved one before dementia was part of the picture. All too often, people become angry and bitter, even to the point of saying things such as “Alzheimer’s is worse than death.” That is a direct quote from the despondent husband of a wonderfully clever woman; let’s call her “Pam,” with whom I worked for some years. What a heartbreaking pronouncement from her husband! At this point, Pam still loved to share opinions and insight, sing Broadway tunes, reminisce, walk, dance, and hold hands.

A person is NOT their Alzheimer's disease any more than a person who has cancer is their cancer!
Those of us who have had family members with dementia or other progressive diseases do understand from whence that sentiment arises. However, it is ultimately not a helpful one. Nor is it accurate. It implies that we might as well give up on a person who is still very much alive. This could not be further from the truth. A person is NOT their Alzheimer’s disease any more than a person who has cancer IS their cancer. The person, an intact spiritual being, is still there, though many of their needs have changed dramatically. We do our loved ones a disservice if we refuse to rise to the occasion of their increased needs.

Maintain connections along the way
There are many gifts to be gained by accepting where the person is at, through each and every phase of their dementia experience. There is connection to maintain all along the way. How we connect will vary with different types and different phases of dementia, but in general, smiling, eye contact, gentle touch and approach, curiosity, acceptance of where the person is, conversation about things that are meaningful to the person, sharing laughter, singing, enjoying simple pleasures, giving compliments, promoting calm, validating the person’s feelings, doing things just the way the person likes, making things easier for them, reminiscing, having fun together, sparking creativity, enjoying humor….well, the list of what can be done to maintain a healthy, nurturing relationship goes on and on.

Responding to the world from an earlier developmental time
In short, we can treat the person like a PERSON, and remember that even though this person is losing skills, even though this person may enjoy and indeed benefit from things that children like, this person is still an adult who is simply responding to the world from an earlier developmental time. This person still has strengths and skills we must actively encourage and appreciate in order for them to have a meaningful life.

Language is powerful
Did you notice that I’ve been using the term “care partner” rather than “caregiver?” Language is powerful. When the relationship between a person with dementia and someone caring for them is viewed more as a partnership, what’s implied is that bothpersons have something to give. Think about it…What might persons with dementia still have to offer us, their care partners?

Some bonds remain unbreakable
They can give valuable input as to what they like and what they don’t like. They can lend us wisdom from past experience; they can share memories of olden days, with humor and perspective. They can inspire us with their courage and resilience. They can give us love. In this process, we may be surprised at how flexible our own capacity to love may become. Even in the late stage of their dementia, our loved one may remind us how some bonds remain unbreakable. Caring for persons with dementia may give us more patience and more appreciation for wordless communication and for life than we’ve ever known.

We are in this together
Thinking about our relationship as a partnership will help make us more open to a person’s participation and input. We just might respect, value and love this person all the more. We are not the same as this person, and we have each been impacted by dementia and changed forever in vastly different ways, but surely we are in this together.

--Marysue Moses, Ebenezer Dementia Care Program Coordinator

0 Comments

What do people in the earliest phase of dementia need most from their care partners?

9/23/2016

0 Comments

If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to. Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning. This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose. I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage. I might mix up medications, so please keep an eye on that. I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal. Multitasking is way too overwhelming for me. My speech may become vague as I struggle to remember the details of whatever you are asking me about.

It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have. There are many! In this early phase, I still have a sense of humor. Please help me find opportunities to laugh. Ask me questions you know I can still answer. Do not quiz me to remind me of what I am forgetting.) I still have the capacity for ideas and decisions, so be sure to give me some choices. Relationships are still important to me. Please reassure me that you care. Hold my hand and speak to me with warmth and kindness. I still have interests. Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree. Give me reminder notes if those still work for me.

In this phase, I will most of all need compassion and understanding. I am still a person, a person whose spirit is experiencing considerable anguish at the moment. Please avoid arguing with me, and do whatever you can to make things easier for me. But please try not to scold or embarrass me in the process. If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!” Please don’t take it personally if I get mad at you or seem to blame you at times. I do this because I am scared. I have a sense that I am losing control. If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you. I so need your love, support and your patience at this time. Thank you for asking me what I need!

--- Marysue Moses, Ebenezer Dementia Care Program Coordinator

This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.

0 Comments

Ten Tips To Ease Transition into Memory Care

8/9/2016

0 Comments

When persons with dementia move into a memory care community, it can take from several weeks up to three months or more for the person to adjust and feel comfortable with the new environment and routine. From my personal experience working with memory care residents at one assisted living for over a decade, I would say the average amount of time before the person settled in was no longer than a month. Your loved one may be angry for a while, and may seem more confused than before. This is a perfectly normal phase. Rest assured, things will improve in time. Here are ten tips to help ease the transition:

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

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

0 Comments

Forward>>

Author

Marysue Moses Ebenezer’s Dementia Care Program Coordinator oversees a unique person-centered dementia care program that ensures Ebenezer residents who are living with dementia receive exceptional, compassionate care based on current best practices.

Misplacing Things, Paranoia, and Dementia

In This Together!

What do people in the earliest phase of dementia need most from their care partners?

Ten Tips To Ease Transition into Memory Care

Author

Archives

Categories

Services

resources

CEUs

Careers