Learning to be zen and mindful is something that takes incredible focus, dedication and practice. There are entire fields of study dedicated to mindfulness and how beneficial it can be to our overall health. People spend excessive amounts of money to attend yoga and mindfulness retreats where they aim to be entirely present in the moment without regretting the past or worrying about the future. While these retreats may have their place, there’s another way to learn how to be present directly from a zen master.
Spend the afternoon with someone who has dementia. That’s right. That’s all there is to it. People with advanced dementia or Alzheimer’s disease can teach us a lot about how to be in this moment, completely and fully.
When you spend time with someone who has dementia, they are present in that moment and they’re acutely aware of their environment around them. They are noticing sights and sounds and temperature variations in that particular moment in time. They may not be able to articulate it entirely, but they are very much present in the moment.
The challenge is usually more for us than it is for them. We are the ones who have a hard time slowing down. How many details from our immediate environment do we miss completely because we’re totally absorbed thinking about the past or worrying about the future? When you spend the afternoon with someone who has dementia, they are truly with you for that afternoon. They are not creating a grocery list in their head. They aren’t worrying about what to cook for dinner later. They aren’t wondering if they’ll have enough time to squeeze in an extra errand after the visit. They are present, with you, in the moment.
Sometimes, someone with dementia will jump from one topic to the next and you might think that they weren’t engaged in the conversation if their brain was heading in such a different direction than yours. Remember that the connections between areas of the brain and the way information is stored, retrieved and processed is very much impacted by dementia. Two different topics that to you seem unrelated, might be connected in an abstract way for someone who has dementia. In their mind, those two topics may be connected and to them, it feels that the conversation is flowing. They aren’t feeling that the conversation is disjointed; they are following the conversation exactly as their brain is permitting in that moment. They are entirely present and engaged; their brain is just taking a different route than your brain.
Sometimes when someone has advanced dementia they may be using the knowledge that they gained early in their life to make sense of their world. They may ask for their parents; they may call you by their sibling’s name. They may reference attending school, or planning for their wedding, or having their first child. Sometimes, people interpret this to mean that someone with dementia is “living in the past.” This isn’t true.
Someone with dementia is living entirely in the moment today—they are as much in the moment as you are. Their brain is just relying on information from decades ago to explain what they are experiencing in this present moment. They recognize that you are a person who is close to them and very much connected to them, and their brain uses that archived knowledge when it assigns the name of their sibling to you. They are not living in the past; they are engaging with you in this very moment. They are just relying on data from their long-term memory that is no longer reliable. But be aware that they are very much present in the moment and acutely aware of information they’re absorbing through their five senses.
We can learn a lot from our friends who have dementia. If we can join them, at their pace, to experience the world around them, we can have a very zen moment. We can learn to notice and appreciate small details.
That’s a trick question—there is no age when exercise isn’t important. Just because someone is elderly doesn’t mean they’re exempt from exercise!
It does mean the exercise needs to be modified to match ability level and possible injuries or conditions such as arthritis. What qualifies as exercise also shifts as someone ages. When someone is young, it may take a jog or run to get their heart rate up, whereas an elderly senior may increase their heartrate just by walking. The important thing is to increase the heart rate and to get the blood and oxygen flowing.
Sadly, many seniors lead highly sedentary lives. All too often, the lazy boy recliner becomes the centre of seniors’ worlds. They settle into the recliner first thing in the morning and watch television for a significant part of the day. They nap in the chair…they may even sleep in the chair all night as a surprising number of seniors tend to do.
The most activity they get is a few steps to the washroom and back. Even then, I’ve met many seniors who intentionally limit their fluid intake to reduce the number of washroom trips required! Going to the washroom may be the only activity they’re getting, and even then they’re limiting that.
A senior who has become accustomed to such a sedentary lifestyle will need to reintroduce activity gradually. Compared to their currently sedentary day, it does not take much effort to suddenly double activity levels! Simply getting up and out of their chair becomes a form of activity that cannot be taken for granted.
If you’re visiting someone who tends to be overly sedentary, encourage as much movement and activity as possible.
As a precaution, you might avoid suggesting “exercise”. Calling it “exercise” may be a barrier to some elderly people. If they don’t have the same context as you do for prioritizing fitness and exercise, they may not be inclined to want to “exercise”.
Instead, integrate basic activity into your visit. Suggest sitting at the kitchen table together for a bit. Ask them to show you around. Step outside into the backyard. While it may not qualify as exercise for you, it is most definitely an increase in activity for them. Be mindful to not push too hard too quickly, but continually suggest more and more activity—and increasing lengths of time out of the lazy boy chair.
When you’re in the kitchen together, ask them to reach items out of the cupboard. Bending, stretching, reaching are all basic movements that are necessary to maintaining a range of motion. Ask for help folding laundry and putting it away. The “excuses” you use to call your loved one into another room, or get them up and out of their chair are only limited by your imagination.
Before you know it, you might start getting a little devious in the creative ways you encourage more activity during your visit. The better you can disguise the increased activity as anything other than exercise, the more successful you’ll be!
Are you hosting any holiday gatherings where you have invited elderly relatives who have health conditions? You have probably already thought about accessibility accommodations such as helping them into your home and ensuring they have access to a bathroom. Those elements are very important and should not be overlooked.
Another element that should not be overlooked is how to make the overall
environment more manageable for your elderly loved ones, especially when there are health conditions to consider.
If someone has a chronic illness such as CHF or COPD, they may fatigue very quickly and need an opportunity to rest.
If someone has edema in their feet or legs (swelling) they may need a chance to sit with their legs elevated.
A stroke survivor may find the environment overstimulating and may need relief.
Someone with dementia may need some peace and quiet and a break from the noisy environment.
Hearing aids may blur the sounds into a din so that individual voices are difficult to discern, and someone with hearing loss may need an auditory break.
To help facilitate these needs and more, you can create a Quiet Zone for your holiday gathering.
Part of the beauty of a Quiet Zone is that it can meet the needs of so many different health conditions. It is one solution that actually meets numerous needs simultaneously. It may even be appealing to younger family members too!
A Quiet Zone is a space dedicated to quieter interaction and less stimulation. Ideally, the Quiet Zone would be a separate room, but if that’s not possible, then a nook or area that can be allocated as the Quiet Zone.
The Quiet Zone should be less stimulating than the environment of the main event. If there are Christmas carols blasting on repeat in the dining room, the Quiet Zone does not have any music. If the Christmas tree in the living room has blinking lights and a miniature train set zooming past, the Quiet Room has steady, ambient lighting that isn’t distracting.
While the main event likely includes loud chatter, many people speaking at once, laughing, and loud voices to be heard over the din, the Quiet Zone is where people can have one-on-one conversations that can be more easily heard and understood. For relatives of any age, the chance to step away from the noise and engage in a more in-depth one-on-one conversation might be a welcome relief.
Someone who tires easily in a crowded room of people might appreciate the relief of settling into the Quiet Room. Other guests can then take turns, one at a time, visiting within the Quiet Room. This way, everyone is supported to be part of the family gathering, but they can participate in a way that matches their individual needs. Having a space to retreat may allow people to reserve their physical and mental energy to join the group for dinner.
The Quiet Room makes it possible to have a quick cat-nap if needed. Giving the brain an extra boost of sleep can make the difference between enjoying the rest of the event, and just feeling overwhelmed and overstimulated. Family members who are stroke survivors or who have dementia will particularly appreciate the opportunity to have a power nap.
When the brain has been impacted by stroke or dementia, part of the brain may not be working the way it once did. The remaining parts of the brain are functioning on overdrive to compensate for the losses. Those over-active brain areas tire easily and benefit enormously from rest. A Quiet Room creates the space and permission to invite such guests to rest their brains when they need it most.
This holiday season, consider creating a Quiet Room for large family gatherings. The Quiet Room will be a retreat space to ensure that all your guests find the event manageable and can enjoy it fully.
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?
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.
Dementia and Communication: What to Expect in the Late Stages
Tuesday, July 2, 2019
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.
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:
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.
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.
What is the greatest challenge for a family caregiver of someone with dementia? Likely, the number one challenge is communication.
Why is communication so difficult?
The person with dementia is still able to speak—in some cases, the person with dementia may talk incessantly. His or her ability to speak is not affected. Uttering sounds, pronouncing words, even using complex vocabulary is still quite possible, and yet, communication is an enormous challenge.
When someone has dementia, speech is not hampered, but language is affected. What is the difference between speech and language? Speech is the physical ability to produce meaningful sounds. It is the complex interaction of muscles and nerve endings all interacting together to produce sound.
Language is not about the sounds being produced; language is the meaning behind the words. In any language, there is a set of rules about how to use words: grammar dictates that words must agree with each other, syntax ensures meaningful placement of words into sentences, semantics is a mental dictionary of words that have meaning to us.
When someone has dementia, their language can be affected. Their dictionary of words may become scrambled and finding the right word is impossible. When the correct word cannot be found, people with dementia often substitute the next available word…but because the dictionary is so scrambled, the next available word may not be related at all to the word for which they are searching. Interpreting the conversation can become difficult!
Language and the words associated with it are not the only element of communication that is affected for people with dementia. Communication relies on extensive non-verbal cues as well, such as posture, body language, facial expression, etc. Understanding and interpreting all of these signals can be difficult for someone with dementia, and their ability will fluctuate over time.
The person with dementia or Alzheimer’s is communicating in the only way that he/she is able to, at that moment. Throughout the various stages of dementia, there are different strategies that can improve communication between family caregivers and those with dementia.