Family caregiving is an honourable endeavour and can be intensely meaningful and fulfilling. But not all families are the same, and there are 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.
Here is a top 5 list of reasons where family caregiving may cause more strife than benefit.
1. Siblings rivalry was never outgrown
Do you still squabble with your siblings as much as you did when you were children? 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. 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.
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. 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.
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.
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. 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.
5. You don't live locally
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. 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.
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!
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. Living in the moment can be your goal for this new year!
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 at 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, at that 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 are 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 at 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 at 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 the 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.
This part of your text helps me understand what may otherwise feel disconnected in a conversation with someone with Alzheimer's. Thank you.
"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."
January 6, 2021 at 4:25 PM
You are amazing! Could you arrange for lunch with all of you one day?
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 to 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.
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.
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.
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.
“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.
“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.
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.
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?”
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?
“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!
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.
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?
Someone who is experiencing dementia may exhibit behaviours that we do not understand. These behaviours have been labelled ‘difficult’ or ‘disruptive’ or ‘challenging’, but is that really a fair assessment of these behaviours?
In caring for people with dementia, the focus often ends up being on the disease itself, rather than on the person who is experiencing the disease. Thus, their behaviours are often automatically assumed to be associated with the disease.
Sharon Stap, a Psychogeriatric Resource Consultant, contrasts older understandings of dementia with more updated approaches. In the past, it was understood that dementia was altering someone’s brain, resulting in different behaviour. All behaviour was assumed to be a result of the disease.
The newer understanding of dementia is that the changes in someone’s brain result in a different perception of the world around them, creating anxiety, fear and other emotions which then lead to different behaviours. Understanding that someone with dementia is experiencing a change in perception which causes behaviour should fundamentally alter how we interact with those who have dementia.
Dr. Sherry Dupuis, former director of MAREP (the Murray Alzheimer Research Education Project), feels that we need to reframe our view of these behaviours. Instead of merely seeing the ‘challenge’ or ‘difficulty’ that these behaviours cause for us, or assuming that all behaviour is attributed to disease, we need to reframe these behaviours as a form of communication. Dr. Dupuis views behaviours as a form of personal expression, a unique way of communicating needs. We should then seek to understand the meaning behind the personal expression.
We must remember that people who have dementia were all unique individuals prior to the onset of their illness. They continue to be unique individuals with different personalities, communication styles, interests, life histories, etc. Dr. Dupuis charges us to never lose sight of the fact that a person with dementia is first and foremost a person who requires love, care, and understanding, not just a disease or a ‘case’ that needs to be managed.
One of the greatest gifts that we can offer to someone with dementia is the gift of truly relating to that person—validating their personal experiences and feelings. Someone with dementia is experiencing the world around them differently than they previously experienced the world, and differently than you might be experiencing the world around you.
This experience may be frightening, overwhelming, or worrisome, and the feelings that are generated and their emotional response is fully valid. We cannot be dismissive of someone’s feelings or emotional responses just because we do not deem a situation to be frightening to ourselves. The kindest thing we can do is try to understand the emotional response and validate the feelings that someone else is experiencing. Only then can we attempt to change someone’s experience into something more positive.
If someone is distressed or having a negative experience, distraction can be helpful, but it is not the first step in the process. Stap emphasizes that you cannot jump immediately to distraction, otherwise you risk being dismissive of someone’s feelings. Stap proposes a four-step process where distraction is the final step, not the first option.
The Four Steps:
1. Show you care
2. Show you want to help
For example, Agnes has dementia, and she is upset and focused on wanting to return home. The first step is to acknowledge how Agnes is feeling. You might say: “You need to get home, Agnes? I can understand why you’re so upset.” Attempting to inform Agnes that she is already at home—known as reality orientation—is not helpful and only causes more distress; Dupuis and Stap agree that there is rarely if ever, a good time for reality orientation.
After acknowledging and validating Agnes’ feelings, you want to show that you want to help. You might suggest: “let’s go see if we can find someone who can help us, Agnes”. While on the hunt for someone who can help, you have the opportunity to redirect, the third step. You could say, “I’m tired. Before we look for someone else who can help, do you mind if we rest here by the piano?”. After this, you have the opportunity for distraction, the fourth step. You could then say: “You play the piano, don’t you, Agnes? Would you play me a tune?”
If you had jumped immediately to distraction via the piano when Agnes first approached you, she likely would have felt even more frustrated that her needs were not being addressed. Acknowledging Agnes’ feelings and needs, then assisting her to focus on something that is more comforting, allows for a positive experience overall.
Interpreting all behaviour as a form of personal expression shifts the focus off of the disease of dementia, and refocuses attention on the individual person. Suddenly, behaviours are imbued with meaning and purpose, a form of communication. It is then our responsibility to enable the best possible form of communication and understanding, setting people up for success, regardless of dementia or other illnesses.
I think you are talking about my mother. Her name was Agnes, and she always wanted to go home. And she played the piano. This 4 step process worked for her. You had to acknowledge her feelings and help her, before distracting.
Dementia and Communication: 5 Typical Mid-Stage Challenges
Tuesday, August 18, 2020
Mid-stage dementia or moderate Alzheimer’s is marked by increased communication challenges. Language is increasingly affected; though speech remains quite clear.
In the mid-stages of dementia, the affected person is less self-aware of their communication challenges. In the early stages, the person is highly aware that they cannot find the words they are seeking; but in the mid-stages, they don’t perceive their communication as problematic. They may be inclined to blame others for not comprehending what they are saying.
Here is a list of 5 communication challenges
This is your new word of the day! Circumlocution is the fancy way of saying “talking around what you are trying to articulate.” In the early stages, precise noun naming is difficult, in the mid-stages, nouns are frequently substituted with pronouns such as ‘he’, ‘she’, and ‘they’. Instead of identifying an item, you might hear ‘thingy’ or ‘thingamajig’. Sometimes, the person with dementia becomes frustrated when you don’t know what the ‘thingamajig’ is, and they become mad at you for not knowing.
Your sweet little granny who never so much as uttered “darn” her entire life is now swearing like a trooper. She can’t tell you what she wants, but she can tell you off just fine! She may be inclined to tell someone “I don’t like your hair. You should have left it the way it was before.” The part of her brain that tells her what is socially acceptable has been affected by dementia, and the language she is using reflects that.
In mid-stage you will hear more repetition. The person with dementia may become set on a few words and repeats those words frequently, or they may be focused on a particular idea/question/worry and continue repeating those ideas incessantly. If repetition deters you from engaging in conversation with your loved one, try out our 5 conversation starter tips.
Digress & Ramble
The conversation becomes more conceptually linked rather than following a linear pattern. For someone with dementia, his conversation may not follow a specific ‘train of thought’. Especially when word-finding becomes difficult, he may be inclined to substitute an unrelated word for the one he cannot find; he then rambles about the new word he has substituted. The conversation can take a sudden leap in a different direction complete with a long rabbit trail rambling.
Group settings become increasingly difficult, and multi-person conversations are hard to follow for someone who has dementia. The mental stimulation of various conversations happening simultaneously can be too much to handle for someone with dementia. You may notice that your loved one with dementia tends to sneak off during family visits or larger events, self-excusing from the crowd.
Understanding the limitations of communication for someone with moderate Alzheimer’s or mid-stage dementia is important. It is easier to set reasonable expectations and plan to be supportive.
Interested in learning more about Dementia and communication? Read our blog on the difference between speech and language.
Why is it so challenging to communicate with my loved one?
Wednesday, August 12, 2020
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.
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.
When asked “how much do you exercise?” the answer is invariably “not enough!” We know that we should exercise more, but do we know what the consequences are if we fail to exercise regularly?
Lack of physical activity is a risk factor for heart disease and stroke(as well as other many other illnesses such as diabetes and even dementia). It is a risk factor that we have control over, so we should reduce our risk!
How much exercise do we really need?
The official guidelines from the Canadian Society for Exercise Physiology recommend a minimum of 150 minutes per week of aerobic physical activity. That’s it! That’s an attainable goal—within reach, even for people who aren’t accustomed to exercise. Even 10-minute increments of activity count toward the total of 150 minutes.
Of course, 150 minutes doesn’t need to be a limit. More activity is even better. The guideline is a base limit for how much activity adults (middle age, baby boomers, seniors, and even the frail elderly) require each week.
Which activities count toward your 150 minutes?
The good news is that going to the gym is not your only option! Walking is a simple and easy heart-healthy activity and counts toward your minutes. Even household activities can count—vigorous cleaning, gardening and yard work all elevate your heart rate and get your blood pumping, and that’s the goal of physical activity!
I find it encouraging to measure exercise in terms of 150 minutes weekly because it allows for flexibility. In contrast, if you measure exercise as ’30 minutes most days of the week’, the focus is on 30-minute intervals, and missing a few days in a week can feel like an overall failure.
For the frail seniors who are utilizing our Triple Vitality program, they appreciate the flexibility in measuring total minutes over the course of a week. Ten-minute increments feel very accessible. Frail seniors can manage 10 minutes of light exercise! Thirty minutes may be out of reach when we first start, but 10-minute activity sessions throughout the day add up quickly!
Our clients are so encouraged by the progress that they experience. You can feel the benefits of exercise very quickly. Increased energy and stamina, renewed interest in activities, reduced stress, better sleeping and digestion, are all immediate benefits to exercise. Knowing that you are contributing to improved overall health and reducing your risk factors for heart disease, stroke, diabetes, and other illnesses only increases the incentive to continue being active!
Be sure to track your minutes of activity this week and see how close you are to the recommended minimum of 150 minutes. Remember that 10 minutes of activity at a time can count toward your total!
If you know someone who is elderly and they are unsure about how to become active, be sure to contact Warm Embrace. Our Triple Vitality program is specifically designed for the frail elderly who need assistance to become active. We love to make a healthy, proactive difference in people’s lives, regardless of age!
thank you for the email.. it has been quite some time since I received your emails. I found this exercise information interesting. I just started the wellness program for diabetics at the Y and am slowly getting more active again.