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What is Doll Therapy?

 

When someone has advanced dementia, their ability to complete tasks may become impaired, but their desire to have an important role and care for others often remains strong. While they may require quite a bit of assistance themselves, they are keen to offer assistance in return.

 

 

Caring for others is a deeply rooted desire for many people that persists throughout the journey with dementia. Simply trying to tell someone “you’re retired and you don’t have to worry about anything!” often produces more agitation. Instead, figure out how to tap into that desire to help for even better results.

 

One option is to provide doll therapy. 

 

Doll therapy allows someone with dementia to care for a doll as though it were a baby.  For some people, this can be highly effective and meaningful since it connects with identify—someone’s identity as a parent or a caregiver.

 

In some cases, a regular doll is sufficient. In other cases, a true therapy doll is more effective. A therapy doll is designed to be as life-like as possible. The doll is weighted so it feels similar to holding an actual baby.  Most are designed to look like a peacefully sleeping infant.

 

The ways that people interact with their own personal therapy doll can vary significantly.  We served two different clients, Mildred and Betty who each resided in long term care and had a therapy doll, but their forms of interaction with their dolls differed.  In each case, we let the client initiate the interaction with the doll and we matched their interaction.

 

 

Mildred treated her therapy doll as though it were a real child. She held the baby properly and laid it down to nap peacefully.  In this case, we mimicked Mildred’s interactions and also treated the doll as though it were real.  Often, Mildred wanted to put the baby’s needs above her own—she would decline to go to the dining room for dinner since the baby was sleeping and she didn’t want to disturb a sleeping baby. In this case, we offered to hold the baby during dinner so Mildred could eat.  We went together with Mildred to the dining room and sat by her table, holding the doll where she could keep an eye on her baby during mealtime.

 

Betty had quite a different interaction with her doll. Betty always wanted to have her doll nearby, but she didn’t always hold it the way one would hold a child. Sometimes she’d pick the doll up by its head, or carry the doll around in a plastic grocery bag.  She was comforted by having the doll nearby, but she didn’t interact with it as though it were real.  Out of respect for Betty, we handled the doll carefully, but rocking the doll throughout dinner wasn’t necessary for Betty’s peace of mind.

 

When interacting with someone who is soothed by doll therapy, always ensure that you act as though the doll is a real baby.  Offer to hold the baby, and hold it correctly as you would a real child.  If someone is upset their therapy doll is not within sight, provide an explanation that would make sense if it were a real baby.

 

 

Saying “it doesn’t matter where the baby is—it’s just a doll!” can be quite upsetting. Instead, saying “oh, your baby is having a nap and the nurses are keeping an eye on her. Best to let the sleeping baby sleep.”  Your reassurance with an explanation that fits the scenario will provide more peace of mind.

 

Therapy dolls can meet someone’s need to nurture and care for others. It isn’t only women who have a need to nurture. Many elderly men with dementia do very well with a therapy doll as well.  One gentleman we met, Dyck, was rather despondent. He wasn’t interested in joining any of the activities in the long term care home he had just moved into. He was even trying to avoid some mealtimes. 

 

The introduction of a therapy doll completely changed his demeanour. He was proud of his new role and was keen to show off his baby to others. When staff and visitors would say: “Good morning Dyck, how is your baby today?” he would proudly respond “she slept through the night again!”  The tactile comfort of carrying the baby, joined with the sense of purpose and newfound caregiving role helped Dyck with his transition into long term care.

 

 

Doll therapy does not have universal appeal. Many people are not at all interested in carrying a doll; others are very well aware it is a doll and not a real baby; others still become so preoccupied with the doll that it can become problematic. Some people become concerned that the baby is sleeping all the time and they’re concerned when they cannot wake the doll. The inverse can happen too if the doll is designed to look like it’s awake—a concern that the doll never sleeps.  If someone is distressed in any way by the details, then doll therapy may not be ideal for them.

 

The next time you’re in a long term care home and you see someone carrying a baby doll, remember that it could be a therapy doll and you should treat it as though it’s a real child.  Ask the person holding the doll about their baby—you will likely see them perk right up and be very proud to tell you more.  While doll therapy certainly isn’t for everyone, it can be a great comfort and benefit to those seeing a nurturing role.

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Why Bed rest isn't always a good thing

 

Avoid bed rest at all costs!

 

No one gets excited at the idea of being on bed rest. We can all agree it’s not something we would necessarily want to experience. What we may not realize is just how risky bedrest can be, especially for the elderly.

 

Bed rest most commonly occurs within the hospital, but can definitely happen at home as well.  When an elderly person is admitted to the hospital, they typically remain in bed. While they may not have been “put on bedrest” by doctor’s orders, the outcome is that they tend to remain in bed. Our hospital system is set up in such a way that those who are admitted to the hospital largely remain in bed all day long.

 

 

The problem is that remaining in bed all day long is one of the worst ways to recover from almost anything!

 

Bed rest limits someone’s physical activity to little more than a few steps to and from the washroom, a few times daily. That is not enough physical activity to maintain muscle mass.

 

The data proves that with an alarming statistic:

 

For every day of bed rest, the frail elderly lose 5% of their mobility.

 

Consider how long an elderly person tends to be in a hospital. Once admitted, most elderly patients are hospitalized for at least a number of days, but upwards of a week or ten days wouldn’t be uncommon. After a week of bed rest, 35% of mobility is lost! If someone is unfortunate enough to be in the hospital for two weeks—which is all too common—on average they would lose 70% of their mobility. 

 

That's a very high risk!

 

 

That could mean that prior to hospitalization, someone was living independently and walking without any aides. After two weeks in the hospital, that same person now requires a walker and struggles to get out of bed or out of a chair.  That’s a drastic change in their ability level and independence. It will significantly impact the quality of daily life.

 

With such a high risk of losing mobility on each day of bed rest, you can see why it is critical to keep people up and moving as much as possible (unless expressly prohibited by doctor’s orders).  Seniors should be encouraged to sit up and get out of bed and into a chair, stand up and sit down numerous times to keep leg muscles strong and do exercises either seated in a chair or passive exercises in the bed.

 

Even just sitting up straight in a chair is beneficial since it is typically easier for people to breathe deeply or cough and expel when they’re upright versus lying down.  Many elderly patients are at high risk of developing pneumonia while in hospital, and failing to sit up, breathe deeply, cough and expel can increase that risk. Developing pneumonia will lengthen a hospital stay, which increases the likely number of days on bedrest—meaning more days of losing 5% mobility each day!

 

 

Unless a medical condition or injury specifically requires immobilized bed rest, remaining active in any possible way is absolutely essential to recovery and long-term maintenance of mobility and muscle mass.

 

Next time you’re visiting a senior in the hospital, have them sit up or get out of bed and into the chair.

 

You just might be helping to save their mobility and prevent the 5% daily loss!

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A Love Story: Violet and Lawrence

 

Violet and Lawrence have been married for 68 years. After a lifetime of hard work, travelling through early retirement and most recently relaxing in retirement living together, they are now separated.  Lawrence’s dementia progressed and he began wandering at night. He could no longer be safely cared for in retirement, and he moved to long term care.

 

Violet had been very physically healthy and she had been caring for Lawrence for years within the retirement home where, together with staff, she could handle his needs. But once he began exit seeking and leaving in the night, even Violet had to admit she couldn’t manage his needs safely. 

 

It ripped her heart out to have him move to another location across town.

 

Now, Violet attempts to visit most days.  She wasn’t a confident driver, to begin with, but she is attempting to drive across town every day and stay with Lawrence throughout the afternoon and dinner.

 

She fears that he won’t eat unless she is at his side, so she remains for both lunch and dinner. She worries about how she will visit every day when the winter weather begins. She never drove in the winter and at 89, she isn’t keen to start winter driving.

 

You can see the toll it is taking on Violet. She appears to be withering before your eyes. She has lost weight and she looks exhausted. She suddenly strikes you as rather frail. She is probably stretching herself too thin, but she wants someone to be with Lawrence through lunch and dinner.

 

Violet needs Warm Embrace to provide a caregiver for Lawrence.  A Warm Embrace caregiver could visit Lawrence through lunch and dinner and keep him engaged in activities throughout the afternoon.  Of course, we can’t replace Violet’s visits, but we can supplement her visits.

 

We can provide a regular schedule so that Violet does not feel obliged to visit every day. She can take some much-needed time to relax and rejuvenate herself.

 

Warm Embrace caregivers can visit Lawrence on set days of the week, and on those days, Violet can remain at the retirement residence, eating her meals in the dining room with her friends.

 

She can rejoin the social activities and events that she participated in for all those years and not become disconnected from her peer group. But she can do so with the reassurance that Lawrence is not alone. He is with a dedicated caregiver who will ensure that he has the best afternoon possible.

 

By recommending additional support for Lawrence, you may actually be saving Violet’s health. She needs the support—possibly more than Lawrence does—and your recommendation to alleviate her stress could make the difference for Violet.

 

We’d be happy to improve the quality of life for each of them by providing a dedicated caregiver when they need it most. Reach out to us today!

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Dementia Care: 5 Conversation Starters

 

When a loved one has dementia or Alzheimer’s disease, it can be difficult to know what to talk about. Sometimes, family members will even say “I didn’t know what to talk about and it felt awkward, so I just stopped visiting.”

 

Rest assured, your visits mean the world to your loved one!  It’s almost guaranteed that any awkwardness was felt by you, more than it was felt by them.  Sometimes, just being present is enough. Just being together in the same room conveys love and caring and appreciation.

 

When you do try to strike up a conversation, here are a few tips that may ease the conversation.

 

1. Talk about right now

 

 

Comment on your surroundings—are the flowers just poking through the ground outside? Is it warm or cold out? Is it a bright sunny day or dreary and overcast?  When you comment on the environment around you, you are welcoming the person with dementia to experience the environment equally. They too can comment on the weather or the temperature. They too can appreciate the view out the window of the garden or the trees or the sky.  Commenting on this very moment does not require memory or complex executive functioning.  Simply noticing and commenting on your five senses is a great way to stay focused on the moment at hand and invite your loved one to join you on equal footing.

 

2. I thought of you the other day when…

 

This is a great way to draw your loved one in and help them to feel connected to you and your everyday life.  This simple line conveys ongoing love and caring.  It gives you the opportunity to share more about what is happening in your life.  You can cue your loved one with some information and it may spark a memory that otherwise may not have surfaced.  When you say “I thought of you when I was driving Liam to school the other day…” you might be surprised that your loved one suddenly asks about their grandson Liam and a whole new conversation starts.

 

3. I was remembering the time you…

 

 

Get the storytelling rolling without asking a question.  If you ask “do you remember the story you used to tell about….” It puts pressure on your loved one to remember something specific. Instead, you start the story by saying “I was remembering the story you told about…”  If you see the spark of recognition, then step back and let your loved one fill in all the blanks. If they can’t recall that story in the moment, you can tell it however you best remember it and share that family moment together. Either way, you’re sharing your family history together without it feeling like a “test” that someone has to remember.

 

4. What is your favourite…? Do you prefer…?

 

If you’re going to ask a question, be sure it’s an opinion-based question.  Opinions can’t be wrong! If you ask an opinion-based question of someone who has Alzheimer’s disease, you may be amazed at the robust answer you receive.  Asking “did you attend bingo yesterday afternoon?” is a fact-based question. The answer is either correct or incorrect and the person with dementia can sense it. If they’re unsure of the answer, the question suddenly feels like a test.  Instead say, “I see both bingo and euchre are on the schedule this week. Which do you prefer?The opinion-based question invites your loved one to provide a personal opinion as a response. If they actually did attend bingo yesterday, you may cue their memory of attending bingo by providing information before you ask the opinion question.

 

5. What do you think about…?

 

 

Again, this question is an opinion based question.  Ask “what do you think about…?” of things that are in the moment and do not depend upon memory or complex reasoning.  Asking “what do you think about the upcoming election?” is probably not a fair question unless your loved one is a long-standing political junkie who has been following the news.  Asking “what do you think about this guest on Ellen DeGeneres?” while you’re watching the show together is probably a better question. It is current and based on information from that moment only. Because it is an opinion question, it allows for a response of “I don’t know” or “nothing” and that’s perfectly fine. You may just be surprised at what does pop out though!

 

Don’t be afraid of having a conversation with loved ones who have dementia or Alzheimer’s disease.

 

There may be times when you need to carry more of the conversation or times when you are simply sharing comfortable silence together, but there will also be times when your loved one will surprise you by sharing more opinions or memories than you expected!  If you follow the 5 tips above and stay completely in the moment, provide some information to cue your loved one, and only ask opinion-based questions, you just may have more engaging conversations.

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What happens after a hospital discharge?

 

One of your long-standing residents, Jean, has just been discharged after a ten-day stay in hospital.  She has been discharged back to your residence, but she has declined considerably in the past 10 days.

 

She lost quite a bit of her strength from being in bed all day at the hospital, and since she was catheterized, she’s struggling with incontinence now as well. Previously she was independent with personal care and was able to get to the dining room on her own.  Now, she’s needing help with toileting and sometimes she’s not even a one-person transfer.

 

Your care team were already stretched thin across residents with high needs.  There are key times of day when you simply don’t have enough staff available all at the same time.

 

That’s where Warm Embrace comes in

 

Jean needs a dedicated caregiver who can attend to her increased needs as she recovers from her hospital stay.  If she requires a two-person transfer assist, our caregiver can be one of the two required people.  Jean’s caregiver can attend to her toileting needs and assist her in getting to and from the dining room at a time when your staff have many other residents who need help getting to meals. 

 

 

Jean’s caregiver can work together with her on some strengthening exercises to help her return to a greater state of independence.  Of course, the goal is to help Jean remain independent enough to remain in your residence much longer.

 

If, however, Jean’s medical condition deteriorated while in the hospital to the point that she now qualifies for long term care placement, Jean’s caregiver will provide the assistance she needs while she remains in your residence awaiting placement.  With her increased needs, Jean may require more than your staff have the capacity to provide, especially when other residents also have many complex needs. 

 

If you have a resident like Jean who is returning from hospital, you can recommend that they implement a dedicated caregiver from Warm Embrace to help them as they recover.  We recognize that our role might vary depending on the goals of the resident and their health. Any combination of the following are possible:

 

 

  • Temporary assistance as your resident recovers from hospitalization/surgery/recent illness until they regain their strength and abilities and no longer need our help
  • Ongoing support to match your resident’s new ability level and needs, allowing them to remain living in your residence even though their needs have increased.
  • Crises support if your resident is awaiting long term care placement and their needs have drastically increased.

Our support ensures the resident has all the care they need after returning from the hospital, while also reducing strain on your staff. 

 

The next time you have a resident with a pending hospital discharge, remember to make Warm Embrace part of the planning process and have care in place for a smooth return to your residence.

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Do you have an exit seeking resident?

 

Bill was a dairy farmer and spent his entire life outside. He was up before sunrise milking cows before the birds had even started chirping.  Every evening, he was out milking again. His entire life was set by the rhythm of farm life.

 

 

Bill now resides in your long term care home in your secure unit since he is adamant he needs to get outside and milk the cows. With his advanced dementia, he does not realize that he hasn’t milked the cows in nearly 25 years, but his circadian rhythm is indelibly marked by the farm rhythm and he’s bound and determined to get outside.

 

Of course, Bill is safe on your secure floor and he cannot leave.  But as dusk arrives, Bill becomes increasingly agitated as he feels the need to be out on the farm, and his agitation is contagious.  He paces the floor back and forth, he looks out each window longingly and he searches for the exit. Other residents can sense his unease and though they don’t know what he’s anxious about, they share the sentiment.

 

The approaching evening as the sun is setting can be a challenging enough time within long term care as many residents have competing needs at that time of day.  Bill’s increasing agitation only compounds those needs.

 

 

What Bill really needs is a dedicated caregiver companion who can address his personal needs.  A caregiver can take Bill on safe outings, fulfilling his desire to be outside. When evening approaches Bill’s caregiver can reassure him “not to worry, you milked the cows a little early today; everything is fine on the farm.” 

 

His caregiver can keep Bill occupied so that he doesn’t start looking for something to do—his history dictates that if he had a moment of boredom, he cured it by heading out to the barn. Instead of letting Bill feel bored—and likely to want to exit seek—his dedicated caregiver can keep Bill engaged in conversation and activities until dinner time when he typically settles into a routine.

 

 

Of course, Bill receives the most direct positive impact from his caregiver, but the incredible part is that he is not the only recipient!  Other residents also benefit when Bill is calm and redirected. The source of the anxiousness and agitation that spread contagiously is solved.  By extension, staff benefit when residents are content and happy.  Bill’s caregiver addresses his emotional need, which frees staff to care for other residents who may be in need.

 

When you have a resident who is intent on leaving the secure floor, remember that one of the most effective strategies may be a dedicated caregiver who can address emotional needs and redirect attention.  The positive impact will have a ripple effect across the entire floor!

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Collecting versus Hoarding

 

Your parents recently moved into a retirement home and you were relieved they’d now have three proper meals per day. With your mother’s progressing dementia, she hadn’t been cooking for quite some time.

 

There’s only one problem.

 

Your mom has been bringing her purse to the dining room where she stashes extra food!  She takes it back to their room and hides the food and you’ve been finding it in various states of science-experiment decay!

 

What is happening?

 

In the past, this might have been called “hoarding”.  But “hoarding” has a negative connotation and is quite different than what is happening for your mom.  A more suitable term might be “collecting”.

 

Her new behaviour is not unusual and it makes sense when you consider what is happening in her brain.

 

The drive or instinct to gather is a hard-wired human instinct.  Humans have been hunters and gatherers for millennia.  We have the instinct to gather food beyond what we immediately need to prepare for future hunger.

 

In modern society, most of us are blessed enough that we don’t have to worry about our next meal. With 24/7 grocery stores, we have access to food at any time.  But for your mother who has dementia, that option is not as viable.

 

First of all, she likely grew up in an era where stores were not open 24/7.  Secondly, she may feel particularly vulnerable that she has no way of accessing food at any given time—she likely cannot drive, she likely wouldn’t know how to get to the closest grocery store, she might not even have access to money to purchase food.  Her instinct to gather food that is available actually makes perfectly good sense.  She is gathering food because she doesn’t know where her next meal is coming from.

 

But wait!” you say. “She has three full meals daily with access to a coffee bar that has muffins and cookies and fruit—she’s never left hungry. Of course, she knows where her next meal is coming from!

 

Your response is perfectly logical.  Remember, though, that her brain’s ability to be logical is diminished.  If she has dementia, she may not remember yesterday clearly enough to remember that she did, indeed, receive three full meals.  She can’t use yesterday’s experience to reassure herself that she will likely receive three meals today.

From her perspective, she is suddenly in this new place that doesn’t yet feel familiar.

 

 

There is no kitchen that she can see. She doesn’t recall the delicious dinner she had last night. No wonder she is concerned about where her next meal is coming from!  On top of all that, one of the deeper portions of her brain—the Amygdala—continues to send out hunger-gathering instincts for self-preservation.

 

Instead of considering her behaviour to be “hoarding” and problematic, understand that she is doing her best to provide for herself and meet her most basic human needs.

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A Picture is Worth 1000 Words

 

If a picture is worth a thousand words, then what does the photo selection on our walls say about us?  When you look around your home, what photos do you have prominently displayed?

 

Photos are one of the ways to personalize your living space, be reminded of your closest friends and family, or commemorate a favourite event.  What if the photos on your wall no longer triggered happy memories? What if you didn’t recognize the people or places in the photos on your walls? How would you feel?

 

 

If you didn’t recognize any of the photos, you might feel like you’re out of place, that it can’t possibly be your home.  You might feel disconnected, or perhaps even a little lost.  You might wish to go home, to a place that’s familiar and recognizable.

 

That is exactly how someone with advanced dementia can feel.  For some people with dementia, they will have a tough time recognizing photos of family members or even photos of themselves.  In the early stages of dementia, it can be helpful to have recent photos of grandchildren available so they are more recognizable when they visit, especially because they grow up and change so quickly.  But as someone’s dementia advances, keeping up with updated photos can be challenging.

 

 

For someone with advanced dementia, it can be quite abstract to look at a photo of a baby or a child and connect to that person as being your great-grandchild.  Having recent photos of the latest great-grandchildren may not provide an anchor-point for identity. It may just be a nice photo of a cute baby, but no greater connection than that. In fact, I’ve had clients with advanced dementia tell me that the cute baby photo—which is indeed their newest great-grandchild—is just the sample photo that came with the picture frame and since they liked the photo, they never changed it out!  

 

Photos of unrecognizable family members may be pretty photos, but if someone with advanced dementia does not realize it’s a family member, then the photo does not have much significance.  It does not signal “you are home” or “you belong here”.  It does not spark memories of happy times, it doesn’t connect to a sense of identity.

 

Instead, it can be helpful to understand what and who your loved one is thinking about most these days.  Oftentimes, people with advanced dementia are thinking and talking about times that they can more clearly remember and understand. Since long-term memory is stronger, people often revert back to childhood or young adulthood memories.  If that is the timeframe that is clearest, then provide photos to match the era that your loved one can remember.

 

 

If your loved one is talking about their parents, see if you can unearth an old photograph of their parents from decades ago—a photo of what their parents would have looked like when they were a child or teen.  If your loved one is talking about their siblings, find old photos of the siblings together as children. You may have a recent photo from the latest family reunion, but if your father is remembering his brother as an 8-year-old child, he may not be connecting with the photo of the 87-year-old man who is his brother today.

 

Many elderly women have strong memories of having children. Their strongest memories are of their children as babies, toddlers or young children.  Finding the old baby photos that might have adorned the walls over 60 years ago can be helpful. The photos will be familiar and will likely spark a smile and perhaps even some fond memories.

 

Another option, though much tougher to implement, is to adorn the walls with photos, pictures, or wall hangings that were in your loved one’s childhood home, or even their first home when they moved out.  Of course, many of those photos and prints may be long gone, but if you can find anything stashed away in the attic, it may be worth bringing them out to see what reaction you get.

 

For someone with advanced dementia, adjust their environment to match their internal reality. Have photos to match their strongest memories.  Select pieces that bring comfort or joy and spark a memory

 

Whether modifying someone’s home or decorating their new living space in a retirement home or long term care centre, provide photos that spark a sense of pride and identity for your loved one.

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Always Respect Their Personal Space

 

Have you ever been to visit someone in long term care, and they told you to “get out!” of their room?  Or perhaps you’ve been visiting someone and you’ve overheard another resident angrily throw someone out of their room.

 

It’s not uncommon, but visitors are often shocked by it.

 

 

Why is it that someone in long term care might yell “get out” to a visitor, a care provider, staff or another resident? To better understand the reaction, let’s step back a little and think about human nature on a larger scale.

 

As humans, we have an instinct to seek shelter and collect items we might need to keep us safe or fed in the future. Most of us have had the benefit of living in a home, apartment or condo throughout our lives, and we made that space into our own personal haven. Think about the layout of your home or apartment. Which rooms do you invite visitors into?

 

Likely, you have visitors in the living room and the kitchen, maybe the family room or den.  For decades throughout your life, you entertain in these rooms. How many visitors do you invite into your bedroom?  Likely, not very many!

 

Throughout your life, you have likely associated your bedroom with deeply personal and deeply vulnerable activities. Human beings are most vulnerable when we’re sleeping, and most of us associate bedrooms with sleeping. It may also be the room where you change your clothes, which is also a moment of vulnerability.

 

So for decades of your life, your bedroom has remained off-limits to all but the very closest people in your lives. No one entered your bedroom without express permission. You had an expectation of complete privacy, safety and security in your bedroom.

 

Now think back to that resident who has just moved into long term care.  Possibly for the first time in her life, that woman now has only one small room to herself. That room is where she sleeps and where she changes. The only washroom she uses is within that one room. Her most vulnerable and intimate personal care all happens within that space.

 

A room that has been private and personal and by-invitation-only her entire life, now has strangers entering it. Care providers, staff, fellow residents seeking their own rooms, lost visitors—any of these people may enter her most intimate, private space without warning.

 

No wonder she might cry out!  No wonder it might cause distress!  For eighty years this woman has had an expectation of privacy in her bedroom and suddenly a stranger waltzes in her room. If this same woman has dementia, she may not remember that she has moved; she may not remember that the “intruder” is the same care worker who served her yesterday. It may continue to be an intrusion for quite some time.

 

What can you do?

 

Whenever you are visiting someone in long term care, be sure that you always ask permission to enter their room.  Think about how you would feel if someone entered your bedroom unannounced; be sure you don’t cause that distress for someone with dementia.

 

 

Announce who you are and how you are connected to them, and then ask permission to join them in their room.  Respect the fact that some residents prefer to socialize outside their room in the open common areas, and other residents prefer the privacy and comfort of their room. Ask the resident what he or she prefers, and remember how personal their room maybe for them.

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How does Dementia affect Personal Space?

 

Have you ever been in line at the checkout and the guy behind you is getting too close….awkwardly close? How do you react? What is your body language like? What is your facial expression?

 

I’ll bet your expression is a cross between curiosity and suspicion.  Your eyes are watching carefully; you’re on high alert.  Your body language is likely standoffish and you’re tense; you’re ready to react or even defend yourself if necessary.

 

 

Is that normal?  Perhaps it’s a bit stronger than necessary for a checkout lineup, but your natural instinct is to protect yourself.  You interpreted the intrusion of your personal space a possible threat, and you’re on high alert until the threat subsides.

 

This human instinct to protect yourself and your personal space is a normal human reaction, and it doesn’t disappear just because someone has dementia.

 

In fact, this instinct to protect oneself may become even stronger in the face of dementia.

 

This self-protection instinct comes from the amygdala, a small area deep within your brain.  The amygdala continues to send out survival instincts even when other portions of the brain are affected by dementia.

 

The part of the brain that houses reason and logic—the prefrontal cortex—is often first affected by dementia.  It is this part of the brain that allows you to think through a situation and respond appropriately.

 

When the guy at the grocery store gets too close, your amygdala sends out a threat alert, but your prefrontal cortex uses logic to asses and notices that the store is crowded.  You then realize that the guy moved into your personal space because he was bumped from behind.  There is no threat after all, and your prefrontal cortex sends a message to the Amygdala that all is safe and secure.

 

For someone who’s prefrontal cortex is affected by dementia, their ability to assess the situation for danger diminishes.  Their amygdala is still sending out the danger warning, but they do not have the ability to use logic or reason to understand the situation and reduce their sense of risk.

 

Think back to your initial reaction to the guy in the checkout line—your facial reaction and body language were not friendly or welcoming, were they?  That’s because you were feeling at risk for just a second.  Now think about someone with dementia who may have a concerned or suspicious expression on their face or their body language is reactive.  Perhaps they are feeling threatened and they are on high-alert.

 

That person with dementia may not be able to use logic or reason to reassure themselves that there is no threat.  If someone is in their personal space, and they feel threatened, they will react exactly like you did—defensively.  They will not be able to contextualize and say “oh, that person is wearing scrubs. It must be a doctor or a nurse who is in my personal space to treat me medically.” 

 

They may not recognize a family member, friend, care provider, or fellow resident. If they don’t recognize the person who is entering their personal space, then that person may feel as strange as the guy in the checkout line.  If so, the reaction—even to a family member or friend—will be the same defensive reaction as a stranger intruding on space.

 

What can you do?

 

 

When you’re interacting with someone who has dementia, be on the lookout for defensive body language.  If you notice a defensive stance or a suspicious facial expression, recognize that the person with dementia may be feeling threatened or at risk and help them to feel reassured.  Be kind, and help them to contextualize. Fill in the missing details that their brain may not be able to supply.  Help them to recognize relationships or connections and do not enter their personal space until you are sure they welcome you.

 

A beloved family member with dementia may not recognize your face, but they will recognize how you make them feel. Focus on helping them to feel safe and reassured, and the defensive behaviour will melt away.

 

 

 

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