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.

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

Did you know that vision loss is not a part of normal aging? Normal aging might include changes in your vision, but the loss of vision altogether is not a normal part of aging. Normal aging includes changes to the body that all people will experience, provided they live long enough. Changes to hair—such as hair loss, or hair turning white/gray—is a normal part of aging. Everyone’s hair will eventually turn colour and become thinner if they live long enough. Macular degeneration, by contrast, is not a normal part of aging because it is not inevitable that someone will eventually experience macular degeneration.

Age-related Macular Degeneration (AMD) is the leading cause of vision loss for people over age 50. It affects 15% of people over age 50; it affects 30% of those over age 75. AMD is a serious condition because it can severely impair someone’s sight as it progresses.

The macula is an area of the eye that is responsible for detail vision. It is the bull’s-eye of the retina, and it is what allows people to read. The macula is essential for the detail vision necessary for reading; the rest of the retina cannot read; only the macula can read. If the macula is severely impaired, the ability to read will disappear; larger or stronger glasses won’t solve the problem as only the macula can provide the detail necessary for reading.

There are two types of macular degeneration—dry and wet.

Dry AMD is much more common, accounting for 85% of all AMD cases. Its impact is less severe because those with dry AMD typically only lose 10-20% of their vision.  Wet AMD is less common, but its impacts are more severe. Only 15% of those with AMD experience the wet version, but they will typically lose 80-90% of their vision and become legally blind.

Dry AMD always precedes wet AMD. Sometimes people ignore symptoms and by the time they see an ophthalmologist, the dry AMD has become wet and is much more severe. With dry AMD, the peripheral vision is maintained and will not be lost. The visual detail provided by the macula is what may be affected. Reading will become difficult, but most people will not become blind as a result of dry AMD alone. In fact, only 5% of people with dry AMD will progress to vision that measures as legally blind, and that typically requires 10 years of progression. Dry AMD typically progresses quite slowly.

What are the risk factors for AMD?

Heredity — almost half of all AMD cases are genetic. It isn’t as simple as having a specific gene; it is a series of genes that are responsible for AMD.

Smoking — increases risk by 3-4 times the rate of a non-smoker. Smoking also increases the risk of wet AMD. Combine the hereditary risk with smoking, and the risk rises to 34%!

Age — while you cannot control the risk factor of age, you can control sun exposure. AMD is the wearing out of the macula. Overexposure to the sun can expedite this process.

Nutrition — maintaining excellent nutrition is important for eye health. Once diagnosed with AMD, patients are advised to eat a nutrient-rich diet that is high in vitamins, minerals and antioxidants (or supplement as needed). When patients follow this regimen, there is a 25% reduction in vision loss.

Wet AMD — if someone has wet AMD in one eye, they have a 50% risk of also developing AMD in the other eye.

Those with AMD are well aware of vision changes and how that impacts detail activities such as reading or needlework. What people underestimate is how AMD can impact practical elements of day-to-day living and increase risk in other areas of life.

Older adults with vision loss have:

• Twice as much difficulty with day-to-day living compared to their peers
• Twice the risk of falling
• Three times the risk of depression (often linked to the loss of reading ability, a key enjoyment activity for many people)
• Four times the risk of a hip fracture

Vision loss affects more than just vision! With increased risk of falls, fractures, depression, and difficulty with daily living, someone’s life could be severely impacted.

How do you prevent AMD?

Regular eye exams are crucial to ensure that AMD or any other vision concerns are detected early and treated in the most effective ways possible. Of Canadians who do not wear glasses, 50% have not had their eyes checked in the past 5 years, if ever! Even if someone does not wear glasses, they should still visit an optometrist occasionally to check eye health.

If you know a senior with vision loss who is at risk of falls, fractures, depression or having trouble with daily tasks, we can help! 

Family caregiving is an honourable endeavour and can be intensely meaningful and fulfilling.  But not all families are the same, and there are some situations where family caregiving for an elderly parent or relative may not be suitable. 

In some situations, attempting to be a family caregiver can actually cause more upset to the overall family than enlisting external help.  If there are tensions or divisions within a family, the added stress of family caregiving can cause a further divide.  It is wise to step back and consider the whole family and the dynamics at play within your own personal family before attempting to take on family caregiving.  

Here is a Top 5 list of situations when family caregiving may cause more strife than benefit.

1. Sibling Rivalry was Never Outgrown

Do you still squabble with your siblings as much as you did when you were children? No one can get your blood boiling as quickly as a sibling who can reignite decades of rivalry in one snide comment! If this is the dynamic you have with your siblings, then family caregiving will be a particular challenge.

Family caregiving can be challenging in and of itself; add sibling rivalry and the emotional toll just jumped to a whole new level. Siblings who exert more effort competing than cooperating will not likely set their personal issues aside and be completely agreeable over care for mom or dad.

When there are long-standing sibling rivalry issues it often ends up feeling as if you can’t do anything right.No matter which action you take, it is misinterpreted by your siblings. You provide hands-on care, it is criticized; you step back to allow your siblings the opportunity to participate, and you’re labelled as “uninvolved” or “being selfish”.With dynamics like this at play, involved family caregiving likely won’t heal sibling wounds. Rather, there is a great risk that the sibling divide deepens.

In family caregiving, the recipient of care—your elderly parent or grandparent—needs to be the focus. Sibling rivalry can’t continue to be the main issue at hand. Out of fairness to your elderly loved ones, you may want to enlist external support so that long-standing sibling rivalries don’t rear again over family care.

2. Your parent is intensely private or modest

Every family has different comfort levels around privacy and personal care. For someone who was intensely private and modest her entire life, she may find it terribly uncomfortable to have family or friends assist with personal care, such as bathing or toileting. An elderly mother may not wish to have her sons bathing her—and her sons are often even more uncomfortable with personal care than is she!

For these families, the kindest option is to have someone else provide personal care—someone who was not previously known to the elderly mother. This way, she can maintain her dignity and privacy in front of her sons, her daughters-in-law, and her friends. Receiving support from a caregiver whose role it is to provide personal care is exceedingly different than forgoing privacy and modesty in front of family and friends.

Some families are surprised to learn that their elderly fathers often have the same high threshold for privacy. People aren’t surprised to hear that an elderly mother does not prefer to be bathed by her sons; not everyone is aware that the inverse—a daughter bathing her father—is equally as uncomfortable in some families. It is less about gender and more about personal preference and maintaining dignity.

The role reversal between parents and children is a complex issue that is deeply personal. It is challenging enough when adult children are suddenly managing schedules and household needs; crossing into the realm of personal care can exacerbate the role reversal. For many elders, they feel that they are losing their last shred of dignity and decency if their adult children begin assisting with personal care such as bathing, toileting, or incontinence.

Family caregiving may be best provided in realms other than personal care in an effort to protect the privacy and dignity of elderly loved ones. Families can express their love and devotion and willingness to assist in a myriad of other caregiving capacities while leaving personal care to a professional.

3. Personality Clashes

Let’s face it—most families are not like the Brady Bunch. Not everyone gets along, and there are decades of history by the time caregiving for elderly family members arises. The elderly grandfather who suddenly needs assistance does not develop a new personality just because he suddenly requires care. If he was ornery his whole life, it is likely he will be ornery in his senior years too!

If he burned bridges with various family members in the past, it may be unrealistic to expect family members to set aside their grudges and hurt and begin family caregiving for Grandpa. In addition to past hurts that may be resurrected, those same family members are now exposed to a whole new host of potential personal insults.

In this case, the family are not in the best position to be caregivers. They are not as likely to be able to provide exceptional care because they are distracted by personal issues. Grandpa is also less likely to be a gracious recipient of care from family members with whom he is accustomed to being ornery. There is a better chance that Grandpa will actually be kinder and more satisfied receiving care from someone outside the family—someone with whom he does not have a long-established pattern of orneriness.

It may not even be something as notable as decades of family patterning. It may just be that parent and child have two different personalities or styles that clash in a caregiving situation. Perhaps an elderly father prefers to be very detailed, slow and meticulous, doing things in the particular way that he has always done. His adult daughter—who loves him dearly and is trying so hard to help—is fighting her natural tendency toward efficiency. She wants to accomplish tasks quickly since she is already torn between her demanding career and her own family waiting for her at home.

The father and daughter have different styles and different personality types—something that may have been complimentary at other stages in life. But when it comes to caregiving and ensuring that her father has the quality of life that he prefers at whatever pace is comfortable to him, his daughter would be well-advised to step back and allow a professional caregiver to assist her father in the way he needs. This way, when she does visit, the daughter will be able to relax and match her father’s pace because she won’t feel burdened by an overwhelming to-do list. The differences in their styles and personalities can be eased by a professional caregiver, rather than being exacerbated by family caregiving and creating family tensions where none need to exist.

4. You’re just not a caregiver at heart.

Truth be told, you’re just not the caregiving type. We can’t all be good at everything; being compassionate, gentle and patient just aren’t your top strengths. There’s a reason you didn’t become a nurse or an activities director at a retirement home. You know your strength, and it isn’t caregiving.

There’s no shame in acknowledging that you’re just not the right person for the job. Your strengths can be utilized in other ways to support your elderly loved one. Maybe you’re a numbers gal and you can ensure bills are paid and finances are up to date. Maybe you’re a handyman and you can take care of the house and property for your loved one. Those are important contributions.

But when it comes to personal care and more intimate needs, you would be wise to enlist the support of someone who is particularly compassionate, gentle and patient for the sake of your elderly loved one. They deserve the best and a trained caregiver can provide what you cannot.

Often people are thrust into a position of family caregiving; it’s not something for which they volunteered. It certainly isn’t something for which they’ve trained or been educated. Circumstance just places them in the role of “primary caregiver” and it’s a far bigger responsibility than they expected.

Elderly husbands are often the most stark examples. After being married for 60 years, the woman of the house develops Parkinson’s. The household had been her domain; work outside the home was her husband’s domain. They’re now retired and she is unable to do many of the tasks associated with maintaining a household. Her husband is inept with household tasks; in his 78 years, he has never been the primary cook or housekeeper. He’s at a complete loss. He doesn’t have the aptitude or the skill set to be a great caregiver. If left to muddle through on his own, it will be his wife who bears the brunt of it. His wife deserves professional care that will attend to all her needs and provide her with coping strategies for Parkinson’s. The couple deserves to maintain the lifestyle they have always known.

If someone is just not cut out to be a caregiver, it is wise to let them contribute in ways that suit their abilities while enlisting other caregiving support so that the person who needs assistance is not disadvantaged.

5. You don’t live locally or you travel frequently

Today’s families are more spread out geographically than ever before. Family members may be time zones apart, and visiting regularly just isn’t possible. When you do visit, you stay for a week at a time and try to get everything mom needs, but you’ve noticed that each time you visit, she needs a little more than last time. You feel bad that she’s on her own between your visits, and you worry about her more and more all the time.

It’s more than just stocking up on groceries and running errands. You want to know that mom has a reliable caregiver to accompany her to appointments since doctor’s appointments cannot always wait until you’re in town. Even keeping track of appointments has become overwhelming lately; having someone to help keep track of scheduling and appointments would be a welcome relief.

You want the best for your mother. She deserves consistent care that isn’t dependent upon your work schedule. You also want the peace of mind that someone is checking in on your mom, even when you are not in town.

If your family fits into any of these 5 categories, then family caregiving may not be advised.  Family caregiving is highly stressful and involved in the best of situations, but if you add any of the above five elements, you may want to enlist some additional care for your ageing loved ones.  The elderly loved one who requires care should remain at the centre of all decision making, rather than being distracted by the challenges that these 5 situations present. 

It’s okay to admit that your family is better suited to enlisting caregiver support from outside the family. Doing so maybe just the thing your family needs to keep everyone sane and happy!

What does exceptional dementia care have in common with an Improv Drama 101 Class?

In both cases you should never say “no”.  Instead you say “yes and...”

Drama workshops will have participants interact in a group. One person starts the conversation and activity.  It’s up to the next person to carry it on and not let the dialogue or action fall flat.  If in doubt, you respond with “yes and...”

If the first drama participant says “did you see that dog run past?” and the second participant responds with “no” it completely shuts down the improv drama.  Instead, the second participant is supposed to respond “yes and I think he was chasing a cat.” This creates an opportunity to keep the conversation going. The first participant now has something to build on. “Oh really? I hope it wasn’t my cat he was chasing.” Now the second participant can build on that “Oh you have cat? What type?” and the conversation continues.

Believe it or not, this skill set is highly useful in advanced dementia care. Those two simple words can open up an entire world of dialogue, just as though it were an improv class.

When someone has advanced dementia, their brain operates differently than your brain.  Someone with dementia cannot match your thinking, but if you try to understand what they are perceiving, you have the chance to tap into their world just a little bit.

When your mother with advanced dementia declares “I got married last weekend you know.” You might be tempted to respond with the facts: “No mom. You got married 61 years ago and you haven’t been to a wedding in years.”  You are factually correct, but you have also lost the opportunity to have a great conversation.  Your mother might even become agitated trying to get you to understand her perspective.

The conversation will be far more effective when you use the drama concept of “yes and.”

Instead, when your mother says “I got married last weekend you know,” you might reply: “yes, and I’ll bet you were a beautiful bride.” Instead of focusing on the facts on when the wedding took place, you’re answering in a way that promotes conversation.  Your mother might just sigh wistfully and say “I think I was…”  If she’s enjoying this reminiscing, go with it: “yes, and did you wear a veil? What did it look like?” guide your mother down memory lane, and if the memories are embellished, that’s okay too!

However your mother remembers a happy moment is hers to have; facts are less critical than feelings. The “yes and” concept can be applied in many situations and it’s not limited to just “yes and…”   It’s the concept that counts.  In many cases, asking questions can be very helpful to better understand the reality that your loved one is living in that moment.

When your mother asks “Who are the children that are playing in the yard?” and you look out the window and don’t see anyone and say “No one is there Mom. I don’t see anyone,” the conversation ends and you lose the opportunity to see her reality at that moment.  In this case, more questions might work better than “yes and.”

You might respond: “Oh, what are the children playing?” and see where it takes you.  It gives the chance to have a conversation that matches your mother’s world and reality. She may reply: “I think they’re playing hopscotch.”  Again, a question might be helpful: “Is that right….do you recall how to play hopscotch? I haven’t played in years! Want to try?”   The next thing you know, you’re having a discussion about hopscotch or something else from a walk down memory lane. It’s a precious moment that would have been lost without the improv-style interaction.

When you’re interacting with someone who has advanced dementia and they may be trying to communicate something to you that doesn’t match your reality, or that doesn’t align with your recollection of an event, pause and use the “yes and…” strategy to explore your loved one’s memory.  What matters most at that moment? Is it correcting the “facts” of a story, or sharing a moment of connecting emotionally and gaining a glimpse into your loved one’s reality?

If 10 people witness a crime, how many different accounts will there be?  Undoubtedly, there will be 10 unique eyewitness accounts. There might be similarities between the 10 stories, but there will most definitely be distinctions between the accounts, possibly even with contradictory details.

Why is this?

Each of us has a unique experience of the world. We can’t help but view the world through our own unique lens. It also means that we interpret the world around us through that same lens, and pass judgement or draw conclusions based on our experience and our perspective.

The same is true for those who have dementia. They are viewing the world through their own unique lens and filtering it based on experience and perspective. They have a massive additional challenge because—their brain is significantly affected by a disease that interferes with how they can process information.

They cannot rely on memory to recall past experience or to logically process information.  For example, if someone with dementia sees a blue towel crumpled on the floor, they could ask if it’s a dolphin. At that moment, their brain did not process that dolphins can only survive in water and they do not live in people’s homes. Their brain is unable to recall past information about dolphins or access memory to know that their home does not have any pets. At that moment, they see something that looks like it could be a dolphin and their brain interprets that data to conclude that must be what they are seeing since there is no other information to explain it.

Another example is, if an elderly woman with advanced dementia says she needs to pick her children up from school, she sincerely believes this to be the case.  She is not aware that she is 86 years old and has not had school-age children in over 50 years. She is not aware that you are her daughter and you are the schoolgirl she is concerned about. At that moment, her brain is accessing long-term memory for information that has changed drastically over the years, but she is unable to recall more recent memory that would put her long-term memory in context.

Her reality is that she has school children to pick up and she cannot leave them alone. She is an attentive mother and needs to get to her children. Your reality is that your 86-year old mother is determined to pick up a school child, and you have not been that school child in nearly 50 years. In fact, you have grandchildren now who are starting in school.

Your realities are different in that moment.  While your reality may be more factually correct, it is nearly impossible to have someone with dementia adjust their reality to match yours. It is far more effective to understand their reality and match them in theirs. Focusing on facts is rarely useful. Focusing on emotions is the most effective way to handle differing realities.

Focusing on facts would be reorienting your mother to your reality: “No Mom, you don’ have to pick children up from school.  I’m your daughter and I haven’t gone to school in nearly 50 years; even your grandchildren have finished school.  You’ve got great-grand-children starting in school now.  You don’t need to pick up anyone.  You’re staying here with me.”

The comments are all factually correct, but they are not helpful to the person with dementia.  The pieces don’t fit together; she is unable to access the memory and process that would allow all the information to make sense. Instead, try to join her in her world.

“Oh, you have children! Tell me about your children.”  Get your mother talking to understand her mindset.  An emotion will likely surface, and you’re looking to understand what her emotional state is in the moment and ideally address her emotional concern.

You’re matching your mother’s reality and joining her in her world for a few moments, rather than trying to force her to join you in your version of reality.  Keep the conversation going and create that emotional connection.

Don’t fight different versions of reality; learn to join your loved one in their version of reality by focusing less upon the facts, and more upon the emotions. 

Family caregiving includes a broad scope of activities. It is not only hands-on personal care, though that can certainly be part of family caregiving. Also included are activities like driving to doctor’s appointments, running errands, cleaning the house, doing laundry, cooking meals, sorting the mail, paying bills, setting up appointments, etc. A primary family caregiver may not be doing all of these activities, but they may oversee the completion of these tasks and arrange to have assistance in these areas.

Family caregiving can also happen from a distance when family members are spread out across a province, or even across the continent. Although the caregiver is not physically present all of the time, they feel the primary responsibility for the care of their loved one, and so they are the advocate and spend many hours on the phone or on email arranging help across the country.

The role of the family caregiver can be incredibly exhausting and sometimes rather lonely. People often do not know where to turn for assistance and attempt to manage everything on their own.

Often, this may not be a realistic goal as the care of their loved one may be too demanding for any individual to take on single-handedly, and so to preserve the health and mental wellness of everyone involved, it may be best to enlist the help of others—be it other family and friends, the LHIN, or a private agency. To advocate for the health and wellness of family caregivers (who are often too busy advocating for their loved one to speak for themselves!), we at Warm Embrace Elder Care have provided a Family Caregiver Bill of Rights.

FAMILY CAREGIVER BILL OF RIGHTS:  I HAVE THE RIGHT…

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting Caregivers.

… and most of all, TO BE MYSELF

Family caregiving is an immense responsibility at the best of times. When a health crisis occurs, a family can feel that they’re in over their heads.  Families need caregiving support during crisis more than ever.

At one time, it felt manageable to assist your mother in remaining in her own home. Sure, some weeks were a little more hectic than others, but on the whole, you were managing. Then she fell. 

You’re not too sure how long she was on the floor before you discovered her; she was pretty disoriented and doesn’t recall the circumstances surrounding her fall.  She was rushed to the hospital and you’ve been visiting her daily. She’s still quite confused and you’re not sure she’d eat anything at mealtime in the hospital without you there to unpackage the food and insist on every bite.

It was fine for the first few days, but your mother isn’t doing as well as you’d hoped and it’s evident she won’t be discharged any time soon. The daily visiting routine you started just isn’t sustainable—especially if your mother goes to Freeport for rehab as the discharge planners are now talking about.

Visiting daily in the hospital is certainly not sustainable long term, and even more overwhelming is the question of how much assistance your mother will need when she does return home, whenever that might be.

Warm Embrace caregivers serve clients wherever they need us most, including in the hospital.  Our caregivers can provide daily visits that cover meal times to ensure your mother eats her meals. Between meals we’ll visit with her, enjoying conversation and keeping her mind active and engaged.

If her next move is to Freeport, our Caregivers can continue visiting her there while she recovers.  Best of all, when it comes time for discharge, you won’t have to panic.  You’ll already have the care in place and ready to go.

The caregivers who have already met your mother and grown to love her can now help her to transition home. The crisis situation of a fall and a fractured hip is much less stressful when you have reliable care that will help you through each stage of the journey.

Instead of feeling like you’re in over your head, you can feel relaxed and at ease knowing that experienced professionals have everything under control.

In the late stages of dementia, or in severe Alzheimer’s, communication is significantly impacted.  By this stage, both speech and language can be affected. The person with advanced dementia is not aware of their communication deficits; they may not be able to think beyond their own needs to notice the perception challenges of the family caregiver with whom they are communicating.

Understanding the limitations of late-stage dementia is critical to communication.  Knowing the challenges that will exist and the ability level of your loved one makes all the difference for successful communication.

Here are 7 elements of communication that will have become difficult, directly impacting the expectations we should set for late-stage dementia communication:

1. Highly Variable

Your loved one is going to fluctuate in ability level—by the day, by the hour, even within a minute.  Just because a person with dementia can clearly articulate a concept one minute, does not mean that she is able to do so the next minute.  There can be islands of fluent and coherent language where she can express herself with impressive clarity.  Understand that her ability to express herself will fluctuate drastically, and a moment of inability is not laziness or faking, or manipulation.

2. Perseveration

Perseveration is a focus or preoccupation with a particular concept. It is often expressed as worry or concern.  In the later stages of dementia, perseveration is quite common and is often expressed through repeated questions or a repeated focus on certain words/topics.

3. Reduced Vocabulary

The mental dictionary of vocabulary is not only shuffled as it is in the early stages, but there are also now entire sections of the dictionary that are missing.  Vocabulary may be reduced to simple words, or your loved one may surprise you with complex words in one moment and lack of simple words the next moment.

4. Unrelated Utterances

Late-stage dementia causes disorganized thinking, resulting in a conversation that jumps around frequently. Where there might be some linkage between concepts in the mid-stages, in the late stages, words or ideas may be expressed that are entirely unrelated.  The reduced vocabulary causes your loved one to grasp at other, unrelated words to fill the gap.

5. Word order and Agreement

One of the hallmarks of language is the correct arrangement of words—words need to be used in the correct order and in agreement with each other. In the later stages of dementia, words become easily entangled, sentences are mixed up, and correct grammar may be lost.

6. Speech Disturbances

Throughout the earlier stages of dementia or milder Alzheimer’s, language is affected.  In the late stages of dementia, speech may also be affected. Someone may have trouble pronouncing words, forget how to pronounce certain syllables, or begin to stutter.  In the very late stages, speech may be significantly impacted so that words are no longer discernable.

7. Non-Verbal Cues Paramount

When your loved one can no longer understand the meaning of the words you are saying, he/she will rely upon understanding your intonation, your body language, the tone of your voice, and your approach. 

Your words could be pleasant and clear, but if you appear to be upset or hurried, your words will be lost.  Only your upset nature or hurried and flustered sense is being conveyed to your loved one.  The person with dementia may then respond to your perceived emotion, completely separate from the words that you are saying.

As someone with dementia progresses through the illness, their ability to analyze their own communication dwindles.  By the late stages, they are not able to self-assess their communication at all. 

As a family caregiver communicating with your loved one, or as a health care professional communicating with clients, it is our responsibility to anticipate the above 7 challenges and accommodate accordingly.

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.