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Do you have a 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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How does Daylight Savings impact those with Dementia?

 

It’s almost that time of year again—time to change the clocks!

 

 

Did you think the same thing I did: “Thank goodness I get an extra hour of sleep”?   The autumn time change feels easier on the system since we gain extra sleep…but then the darker evenings are a tougher adjustment.  The darkness creeping in earlier day by day, and then leaping earlier by an hour can be a tough adjustment.

 

If adjusting to the time change can take a toll on those of us who can cognitively process it, how much harder is it for someone with dementia?

 

Someone with advanced dementia may not be able to tell time anymore. Some days, it may seem as if they don’t have much routine if they are waking at odd hours and sleeping during the day. But even if their routine has shifted from what it was years ago, they still have an internal sense of the passing of time. Suddenly adding an hour throws off that internal sense, and it can feel disorienting and confusing.

 

The toughest part of the autumn time change is the earlier time for sunset.  Dusk can be a challenging time of day for those with dementia, and dusk happening earlier in the day can exacerbate those challenges.  For those who experience elements of “sundowning”—where dementia symptoms worsen and agitation increases at sunset—the autumn time change can be a tough transition.

 
What can you do to ease the transition? 

 

To ease the transition of the time change, turn on all the lights in the late afternoon. Instead of waiting until it is dark and you need the lights to see, turn on all the lights before you truly need them on.  Keep the environment well-lit, bright and welcoming.  For the person with dementia, it is helpful to be in a well-lit environment that is not confusing with the long shadows that accompany dusk.   In many cases, it is also helpful to close all the curtains before sunset, before the streetlights turn on.

 

In preparation for the autumn time change, you can start turning the lights on earlier in the days and even weeks leading up to the time change.  If you start the routine of turning all the lights on by 4 pm, then that routine can remain constant, even when the time changes and dusk are imminent at 4 pm.

 

When caring for someone with moderate or advanced dementia, just knowing what to expect can make a difference.  Recognize that the time change is just like dealing with jet-lag and it will be an adjustment for your loved one. Expect that they may exhibit some unusual behaviour or feel agitated and anxious the week following the time change.

 

Prepare as much as possible by gradually backing up the time when you turn on all the lights and close the curtains.  Once the time change occurs, ensure that you do keep the environment brightly-lit before dusk even arrives.

 

And if you can, enjoy that extra hour of sleep!

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"My father can no longer care for my elderly mom"

 

In a few months, your parents will be celebrating their 62nd wedding anniversary.  After more than six decades together, they’re practically inseparable.   Their staunch European background has rendered them rather emotionally reserved, but of course, they love each other in their own quiet way.

 

Your mother was the queen of the domestic domain, cooking and cleaning and raising children and managing the household. Your father worked hard to provide for the family and took care of the yard and cars and the handyman jobs. His way of demonstrating love to his family was to work hard and provide well. These roles worked well for your parents for decades of marriage and through countless life challenges.

 

But now your mother has Parkinson’s Disease. It has been progressing over the past few years and what started as a minor tremor in her left arm, has now become debilitating. She struggles with tasks that require dexterity because her tremor is so pronounced. Her walking gait is halting and unsteady and she has fallen numerous times.  She has trouble keeping track of the medications she is supposed to be taking every four hours to help manage her symptoms.  Basic daily tasks such as getting dressed are now proving to be a challenge.  More complex tasks such as cooking or baking are pretty much out of the question.

 

Your father dearly loves your mother, but he is entirely ill-equipped to provide the help that she needs.  He proudly declares that he can’t even boil water; he has never cooked a day in his life. He has been depending on ordering in takeout food, but your parents are already tired of fast food.  When it comes to helping your mother get dressed, he is flummoxed by her undergarments and embarrassed about helping her to dress.  His no-nonsense, high-efficiency mentality made him an excellent businessman, but those same traits are not helpful when trying to assist his wife to get dressed. It’s not a stellar start to their day when getting dressed becomes a major mission and sets the tone for the day.

 

 

Although your parents insist that they’ve gotten this far by weathering life’s storms together, it’s time for some expert assistance.  While your father has many great talents and skills, providing personal care and household assistance are not his specialties.  Your mother deserves the care and attention that a trained caregiver can provide.

 

Someone who can not only support her physical needs but someone who can also set her up for success each day.  Someone who can make the morning routine feel like daily pampering instead of a chore. Someone who can linger overdoing her hair and her makeup and helping her to select her outfit and jewelry for the day so she can maintain the poised appearance that she always prided herself in.

 

Your father wants this outcome for your mother—he wants her to feel well each day, to look her best and take pride in her appearance and start each day strong.  He may just need help in recognizing that he isn’t the best one to provide this support.  His heart is in the right place, but he has limited life experience in this department and for your mother’s sake, it is worth it to enlist a professional who can make an enormous difference.

 

It is okay to acknowledge that everyone has different skills and strengths and life experiences. Your father has many valuable skills that made him an excellent businessman. He continues to use those skills to manage household finances and continually monitor their stock portfolio.  But he is ill-equipped to manage the nuances that come with personal care and supporting his wife through her Parkinson’s journey. 

 

 

Enlisting additional support does not mean that he does not love his wife sufficiently to help her; it means he loves her enough to ensure that she has the professional and experienced care that she deserves.  

 

Let your father play to his strengths and let us demonstrate our caregiving strengths to support your mother in her journey.

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The Season of Thanksgiving & Reminiscing

 

Does your family have any Thanksgiving traditions? Do you share memories of years past, and do you share what you’re grateful for this year?

 

If you have family members who have dementia, there are ways to make these traditions more inclusive and enjoyable for them too.

 

The wonderful thing about stating what you’re thankful for is that the answer can’t be wrong!  No matter what you are thankful for, no one else can say that the answer doesn’t count. This is a great conversation starter for someone who has dementia.  It does not depend on factual memory, there is no right or wrong answer, and any answer can spark new discussion.

 

 

To make it easier for your loved one who has dementia, be sure to provide an example.  It can be a lot of pressure to ask them first—“What are you thankful for?”  Instead, you can start, and then ask “are you thankful for anything granddad?”

 

To keep the conversation going, you can encourage reminiscing, but be careful to avoid making grandad feel that he has to justify his answer.  Here are some examples that might echo someone’s automatic response, but are not recommended, followed by an example that is more dementia-supportive.

 

NOT Recommended:

Granddad responds: “I’m thankful for you!” and you respond “and why are you thankful for me?”  Your intent is to keep granddad engaged in the conversation, but instead, it may feel like he has to justify his answer.  That can add stress and pressure to granddad and he may be less likely to answer any other questions if he has to justify his response.

 

SUPPORTIVE:

You can affirm his answer by saying “why thanks Granddad, and I’m thankful for you too! I’m grateful we’re having Thanksgiving dinner together with you tonight.”  You have affirmed granddad’s answer and kept your response in the present moment so granddad doesn’t have to rely on recent memory. 

 

If your granddad’s short term memory is highly impacted, he may have clearer memories of his childhood and he may often talk about his childhood.  He may state that he’s thankful for his mother or his younger sister, both of whom have long since passed.

 

 

NOT Recommended:

Granddad your mother has been dead for nearly 30 years.  Surely you have something to be grateful for today.”  This response tells granddad that his answer is wrong, and it shuts down further conversation.  It eliminates the opportunity for reminiscing and revealing his state of mind or thought process. It may also rip open the wound of grief if granddad has briefly forgotten that his mother is deceased and he may grieve her as though it is a new loss.

 

SUPPORTIVE:

oh yes Granddad, your mother was a very special woman.  Do you have a favourite memory of her?”  This response validates Granddad’s answer and opens up the opportunity for more conversation.  The follow-up question is completely open-ended—he can say “no” he doesn’t have a favourite memory and that’s okay. If he is reminiscing and can remember something special, he is free to share.  You might be amazed where the walk down memory lane can lead!

 

When encouraging someone to reminisce, aim to keep your follow up questions open-ended or opinion-based. If you ask fact-based questions it can feel like a test with an inferred right or wrong answer.

 

NOT Recommended:

A fact-based question might be: “your mother always baked pies for thanksgiving. Do you remember what type of pie she baked?” There is an inferred right or wrong answer and it feels like a test. 

 

 

SUPPORTIVE:

Instead, ask opinion questions that cannot be right or wrong.  “your mother always baked pies for thanksgiving. Did you have a favourite flavour of pie?

 

NOT Recommended:

If Granddad responds “I liked mother’s strawberry pie at thanksgiving” and you know that his mother did not make a strawberry pie, do not correct him!  It is NOT helpful to say “oh granddad, that can’t be right. Your mother only ever used fresh fruit from the farm. She made strawberry pies in June with fresh strawberries from the field.  At Thanksgiving, it had to be apple or pumpkin.”

 

Your response may be factually correct, but does it really matter?  How does it make granddad feel to be corrected? It tells him that his answers are incorrect and will likely shut down further conversation.   Is the purpose of the conversation to exchange correct facts, or is the purpose to help granddad reminisce and share positive memories in a loving environment?

 

SUPPORTIVE:

Your mother’s strawberry pies certainly were delicious!  Wasn’t there a time when you were a little boy and you stole the pie out of the window where your mother left it cooling?”  You validated your grandfather’s response about strawberry pies without correcting his response. To keep the conversation going, you’ve supplied more information to possibly spark his memory. 

 

This is a story you’ve heard him tell many times before, and each time his face lights up with a mischievous grin—just like he’s 9 years old all over again!  You’re giving him the gift of remembering a story that he loves to tell, and instead of testing his memory, you spark his memory and let him tell the details of the story as he remembers it.  If his details differ from the last time he told the story, it doesn’t matter. What matters is that he is the star of the moment, telling his story the way he remembers it.

 

When you’re together with family this thanksgiving, and you have the opportunity to reminisce with family members who may have dementia, aim to provide supportive responses that keep the conversation going.  Remember that the purpose of the conversation is not to exchange factually correct information.  The purpose is to share quality time with loved ones, validate their feelings, and share a moment of open love and trust.  You may just be amazed at the memories that surface!

 
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Boredom is the Cause of Behaviours

 

Humans are wired to be busy, to be productive, to be doing something.  Even when we are intentionally taking a break, we have to consciously remind ourselves to relax and not default to our busy-mode.  This drive and desire to be productive is deeply ingrained, and for people who have heeded the productivity call their entire lives, it is a well-worn feedback loop. They feel the need to be productive, so they remain constantly busy, and the fruits of their labour are the visible reward for being constantly busy.

 

What happens when dementia interrupts that feedback loop?

 

When someone’s dementia has progressed, he has a harder time remembering how to do activities he did his entire life.  George, a gentleman who enjoyed woodworking and fixing things around the house may no longer understand how to use his tools.  He gets started on a task, and partway through forgets what he was doing, leaving a wake of unfinished projects behind him.

 

 

His desire to continually work on things around the house does not go away.  His drive for productivity and doing something meaningful and important will far outlast his ability to operate his tools.  George was never one to sit and relax, instead, he was always working away on something, and that desire can carry on even as his dementia progresses.

 

The fact that George can no longer successfully fix broken household items will not prevent him from trying to do so. In fact, he may be inclined to ‘fix’ items that he is certain are ‘broken’ because he’s now having trouble operating household appliances.  Frustrated relatives might try to insist “just sit down and relax!” but since that was never in George’s nature, it’s unlikely he’ll be settled for long. George’s brain is sending him the signal to be productive. He has a strong sense that he should be doing something, he’s just not sure what that something is.

 

When George cannot easily find a task that meets his need to be productive, he will create one.  Dementia has interfered with his ability to follow through with all the tasks he previously did. If the signals in his brain are scrambled, the output of his activities may also be scrambled.  He is trying his best to ‘fix’ the ‘broken’ wastebasket and has dumped its entire contents on the floor.  To an exhausted family member, this is just one more dementia ‘behaviour’ that doesn’t make any sense and has now created a mess to be cleaned up.

 

 

What George needs are activities that he can manage.  Dementia has impacted his ability to do the same activities in the same way he did them 20 years ago, but it has not taken away his ability to do all activities. What George needs is someone who can customize familiar activities to match his current ability level. He needs someone else to break down an activity into individual tasks, and do only one small task at a time. George is still capable of doing many things. He needs direction and he needs cueing to successfully manage a sequence of complex activities.

 

George is bored. And when he is bored, his brain will create an activity to do. Even if the activity doesn’t make sense to someone else’s brain, even if the activity creates a mess or breaks something, or causes a disturbance, his brain is desperate for activity and stimulation. In the lack of meaningful stimulation, the brain will create its own entertainment.

 

The underlying cause of many so-called dementia ‘behaviours’ is boredom.

 

When someone with dementia is occupied with meaningful activities that create a sense of purpose and productivity, their ‘behaviours’ are often drastically reduced. Their need to be productive is met and they feel satisfied.

 

 

Providing meaningful activities for someone with dementia is one of the most effective ways to reduce undesired behaviours.  It does not require medication changes and has no side effects.  However, it can be incredibly time-consuming and does require an enormous amount of patience.  Time and patience are two things that family caregivers often have in short supply—they’ve used up both!

 

Professional caregivers can fill the gap. Professional caregivers can take the abundant time and patience required to keep people like George engaged in meaningful activities. Caregivers help clients with dementia to connect to their passions and interests by making activities accessible.  Caregivers modify activities to match their client’s ability level—that might be fluctuating by the day or by the hour—to ensure that activities are never too difficult or too easy and boring.  

 

When people are enjoying hobbies that they love, and they are not frustrated or bored, their so-called behaviours are drastically reduced.  What passions might we re-inspire in your loved one, to spark their desire for meaningful engagement and productivity?

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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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Back to School!

 

September is synonymous with back-to-school time. Long after you’ve graduated, it’s hard not to feel the appeal of the fresh new school year that starts each September. The back-to-school advertisements start (far too early!) in the summer and remind everyone—even those who are not students—that the new school year is fast approaching.

 

With all the anticipation over new school supplies, different classes, reconnecting with old friends and meeting new teachers, September is tinged with excitement.

 

For some people though, September comes with a whole new set of challenges.  Those who are squeezed into the sandwich generation can feel the extra pressure that the school year brings.

 

The sandwich generation includes those who are caught between caring for their children, while simultaneously providing care to their ageing parents.  Those feeling the crunch in September are likely even members of the club-sandwich generation: mothers who have young children at home who are providing help to their parents and their grandparents at the same time.

 

Club sandwich members are lucky enough to be in families who have four living generations at the same time.  Their young children are the youngest generation, the hectic mother is the second youngest.  The grandmother may be in her 60’s or 70’s and the great-grandmother in her 80’s or 90’s.

 

 

The young mother is caught between raising her young children, getting them out the door on the first day of school and being there for them when they step off the bus at the end of the day and also helping her mother to care for the elderly great-grandmother whose needs have suddenly increased.

 

September may represent a time of excitement and fresh beginnings for many people, but for this sandwich generation young mother, it may mean increased stress and an even more hectic schedule as she’s attempting to ferry children to after school activities, help with homework, and also deliver meals to her nanna across town.

 

Those in the throes of the club sandwich generation need support to manage the needs of so many generations at once.  The help can take many different forms—extended family and friends, a nanny for childcare, a driver to chauffer children to all their activities, or a caregiver to support great-grandmother Nanna.

 

A professional caregiver can provide the support that Nanna needs, while also alleviating pressure off the young mother who is hoping to get her children’s school year off to a good start. September can be a time of exciting new beginnings for Nanna too!  She can look forward to meeting friendly caregivers who will become new friends. 

 

 

Who in your family or circle of friends might benefit from the back-to-school excitement of September by engaging the support of a professional caregiver?

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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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