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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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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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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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Hallucinations and Vision Loss

 

Your grandmother has had macular degeneration for years and her vision is now quite limited. Lately, she’s mentioned seeing little people in the living room, especially in the evening. Does that mean that she now has dementia? Is she experiencing a mental illness or disconnect from reality?

 

Quite likely she is not! Hallucinations with severe vision loss are more common than you might expect, and there is a name for it: Charles Bonnet Syndrome. The condition is named after Charles Bonnet, a Swiss philosopher and writer who first described the condition in 1760 after witnessing his grandfather experience vision-loss hallucinations.

 

 

Charles Bonnet Syndrome (CBS) is a condition of temporary hallucinations in people with severe vision loss. The vision loss is usually due to one of the following three conditions:

 

  • Macular degeneration
  • Glaucoma
  • Diabetic retinopathy

The visual hallucinations are typically quite simple—-seeing people, animals, houses, or other everyday objects. In some cases, more complex visions are animated or dreamlike and continue for a longer duration. These visual hallucinations are almost like a mirage, and often contain greater detail than what someone can detect in their actual surroundings.

 

CBS is sometimes referred to as “phantom vision syndrome” because it is similar to “phantom leg” syndrome. After an amputation, someone may continue to “feel” sensation in a limb that is no longer present. The feeling is created and experienced in the brain; there are no stimuli to create the sensation. Likewise, with CBS, the retinal cells in the eye are no longer receiving the visual images (due to damage from macular degeneration, glaucoma, or diabetic retinopathy). The brain begins creating its own “phantom” images using images stored in memory to create new “vision”.

 

The eye is only creating general images and cannot provide detail due to damage from the illness, yet the brain is still seeking those details. The brain will compensate for the weakness of the optic nerves and retina. Sometimes, the brain will do this by completing an image (i.e.: adding details that are not present); at other times, the brain may create whole images that are not present.

 

The hallucinations with Charles Bonnet Syndrome are visual illusions and are distinct from delusions. Visual illusions are a misinterpretation of external visual stimuli (interpreting the sweater on the couch for a cat, and adding the details of whiskers and eyes). Visual illusions affect only vision, none of the other senses. A delusion is believing something that is not true but believing it wholeheartedly (believing oneself to be the messiah). A delusion may include any of the senses and often a delusion is supported by more than one sense (hearing voices and seeing things for which there are no external stimuli).

 

Someone who is experiencing a visual illusion will accept that they have misinterpreted an image; someone who is delusional will not. Those with CBS are often quite aware that their perceived illusions are not real—they are able to rationalize that there cannot be miniature people standing in their living room. Some visions are surreal—small people, dragons, exotic animals—and other visions are realistic, such as seeing cows in a field.

 

CBS is most likely to affect someone soon after vision loss. The brain is still trying to interpret visual stimuli, even though the optic nerve and retina are no longer producing the images. Often, the brain will adapt to the loss of the incoming stimuli and the hallucinations will dissipate after 12-18 months, though some people have experienced CBS for many years.

 

CBS often goes undetected and undiagnosed. There is limited awareness of CBS—not just in the general public, but also in medical communities as well. Patients are often hesitant to report the symptoms of CBS because they fear being labelled “crazy” or mentally unstable.

 

 

Most estimates suggest 10-30% of those with severe vision loss will experience CBS; the most recent study conducted by the CNIB (Canadian National Institute for the Blind) surveyed 2500 people with low vision and found 18.8% had experienced hallucinations.

 

Of those who experienced hallucinations:

  • Most common hallucinations were of people, animals, shapes or patterns
  • Most people hallucinated daily—but for just a few seconds or minutes at a time
  • 1/3 could get rid of hallucination by blinking
  • 1/2 hallucinated in dim light, darkness, or while falling asleep
  • 1/3 could not detect a pattern to their hallucinations
  • 2/3 did not find their hallucinations to be bothersome

 

For many people, just knowing about CBS is a huge relief—it reassures them that they are not disconnected from reality and that there is a real phenomenon to explain their experiences. Unfortunately, there is no cure or treatment for CBS, and there isn’t one simple test to diagnose CBS. It is important that the doctor is alerted to hallucinations because it can be a symptom of other conditions, all of which should be ruled out before settling on a diagnosis of CBS.

 

While there is no cure for CBS, there are coping strategies such as:

  • Closing your eyes or blinking rapidly
  • Shifting eyes left to right every second for half a minute
  • Adjusting lighting—some people need more light to reduce hallucinations; others find bright light causes hallucinations
  • Watching TV or moving locations
  • Explain to family and friends what you are experiencing
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Dementia and Communication: 4 Points of Awareness

 

When someone is in the early stages of dementia, they are aware that they’re having trouble communicating.  They know that they can’t find the words to use and they perceive others’ confusion. Their ability to talk remains strong, but their language is beginning to be affected.

 

It is important that we understand and know how to communicate with seniors experiencing dementia because they are still members of our society. If you are communicating with someone who is in the early stages of dementia, or someone who has mild Alzheimer’s, be sure you’re aware of these items:

 

1. Nouns

 

Nouns are the first words to escape with dementia.  Nouns are specific—people, places, things—and when you attempt to find a specific noun, it evaporates.  Someone with dementia may have trouble naming specific items, even everyday items.  Instead of naming exactly what or who they are talking about, they will talk around the item/person, describing it in detail until someone else can guess the correct word. 

 

 

Verbs, adjectives, and adverbs remain strong, and the description can become quite vivid.  The person with dementia is searching through their mental dictionary of words and cannot locate the exact word they are looking for, but they are in the right area—they’re in the right arena, the right section, the right row, but they’re not in the right seat.

 

The person with dementia is not playing guessing games with you! His/her vocabulary with descriptive words is so strong, you might assume that he/she must remember such basic nouns, but that is not the case.  Understand that naming items, people, and places will be the most challenging words to locate.

 

2. Clichés

 

Clichés and stereotypes become very useful to people with dementia.  They can rely on a safe conversation that is predictable by using memorized responses.  Social pleasantries are usually dependent on clichés, and continuing to use those clichés allows someone with dementia to maintain social appearances.  When we say that someone “presents well socially” that often translates to “they use socially acceptable clichés in polite conversation”.  As dementia progresses, people will increasingly rely on clichés when they’re in social settings.

 

3. Comprehension Challenges

 

Comprehension will become increasingly literal.  It will be difficult for someone with dementia to understand sarcasm and other forms of humour.  Analogies or metaphors are difficult to discern, and abstract expressions no longer make sense.  In the middle of a conversation, you express “don’t throw the baby out with the bathwater.”  Someone in the early stages of dementia may be confused and wondering how the conversation switched to bathing a baby.  Abstract expressions begin to lose their meanings and are interpreted literally.

 

4. Redundancy Helpful

 

It is helpful to build redundancy into your conversation as a means of continually reaffirming the context of the conversation.  Pronouns can be difficult to follow (he, she, they, etc.); naming the person about whom you are speaking ensures that the person with dementia can follow the conversation.  It can be helpful to build other redundancies into the conversation as well. 

 

 

A sentence such as: “Susan called last night, she’s coming to visit and bringing Evan,” could easily cause confusion for someone with dementia.  Re-wording that concept into a series of simple sentences, with built-in redundancies makes the meaning much clearer: “Susan, your sister called last night.  Susan is coming to visit.  Susan is bringing Evan, her grandson, with her.

 

As we practice these 4 points of awareness, we are including our seniors into meaningful discussions! Don’t forget that our seniors are active members of society.

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Isn’t it tough when clients pass away?

 

I get asked this question a lot.  And the answer is yes, without a doubt, yes.  It certainly is sad when a client passes away.  We have many long-standing clients whom we have served for years. We have seen them through major life transformations, journeyed with them as their health and abilities fluctuate, and have been at their side in their final moments. 

 

These are people for whom we have provided intimate personal care. These are people who entrusted us with even more than their physical needs; we are often their listening ear, the ones who reassure them when they voice fears or concerns, the ones who acknowledge and validate their current reality.

 

Our clients are more than clients.  They are an extended family with whom we share deeply meaningful moments. So the answer is absolutely yes—when a client passes away it certainly does impact us.

 

 

The next question that usually follows is: “how do you keep doing it? If losing clients is tough, how do you not get depressed by it all?”

 

That is a tougher question to answer, but finding the answer to this question makes all the difference in the world. It is always important to step back and consider the impact that we have made in the client’s life and the lives of their family.

 

Impact in the Client’s Life

 

We had a long-term client who passed away just last week.  Over ten months ago, she was deemed palliative and initially was told she may only have a few weeks left to live.  She proved everyone wrong!  Every day our fabulous caregivers arrived to spend quality time together, with hopes of drawing out her charming smile.  Many have suggested that she lived for our daily visits; it is possible that the companionship of our team contributed to her surviving months longer than doctors predicted.

 

We impact our client’s lives each and every day.  We arrive at each client visit with the viewpoint of: “how can I make today a better day for this client?”  We have countless heartwarming moments that will make you laugh or cry—or both!  We share these Heartfelt Moments so others can feel the joy and deep meaning that we experience.  We aim to make every day special for clients—whether it’s our first visit with them, or it’s within their final days. 

 

Impact in the Family’s Lives

 

Recently, we were asked to provide palliative care to a client who had stage four cancer that was rapidly progressing.  Although we did not have years of history with this client, we quickly grew to love her too.  It was her family’s wish that she remain in her apartment until the very end—they desperately did not want their mother to pass away in hospital.  Our attendant care granted this family their final wish for their mother. She passed away in her own bed, at peace, with someone holding her hand.

 

We cannot doubt that the family was impacted.  The family had peace of mind knowing that someone was with their mother around the clock at times that they could not be present. They knew she had the tender and loving care that she deserved. They were granted their wish to have their mother pass away in her own bed at home.

 

 

In moments when we are tempted to feel sad and depressed because clients have passed away, I stop to consider—what impact did we make?  If we were brought in specifically to provide palliative care to someone in need, and we successfully enabled them to remain at home and experience the passing they had envisioned, what more could I ask?  When I realize that without our care, the family’s wish and the client’s wishes might not have been granted, then I realize that it would be selfish of me NOT to provide the care and support that they request.

 

When I recognize that our clients received a higher quality of life for the final months or years of their life, I realize that it is all worth it.  I am a better person for each of the clients I have met. They each leave a lasting touch.  What a blessing that I get to meet so many incredible people who touch my life, and who have entrusted me with the great honour of impacting their lives too.

 

So is it tough to lose clients? Yes, it most certainly is.  Is it depressing though? I would say no, it is not depressing.  Instead, it is a blessing to have been invited into the client’s life at such an important time. I am honoured, I am blessed, and I am touched.

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