When self-isolating at home, have you found yourself scrolling through random online updates more often than you want to admit? If so, you’ve probably seen articles and posts about parents who are going crazy being cooped up with their children for weeks on end. Both the parents and the children are feeling the strain.
It isn’t just the parents of young children who are feeling the parent-child relationship strain. It can be felt at all ages but is showing up particularly strongly for those who have been thrust into a caregiving role that is more extensive than they anticipated.
Adult children of ageing parents who have dementia or other high-care needs may suddenly find many of their regular support systems removed. The Adult Day Program that your mother attended a few days weekly is now closed; her regular social groups at the church have shut down; even the PSW who usually comes to bathe her has not been coming. Your mother’s schedule is in upheaval and you have become the primary—and only—caregiver.
It can be pretty overwhelming to suddenly find yourself in the full-time position of caring for someone with dementia. While you’re happy to help sometimes on some days, being the only support person day after day is wearing you out and you’re starting to feel the strain.
It is okay to admit that, just like your mother, you’ve experienced a massive upheaval in your schedule and routine, with newly added responsibilities. And though you may be tempted to think “I’m not working at the moment so I should be fully available to care for mom,” providing 24/7 dementia support is more than one full-time job.
Providing care to a loved one with dementia is more than just physically taxing. It can be emotionally exhausting as well. There are certainly very meaningful moments with laughter and joy, but when it is your parent or your spouse whom you’ve known for decades, it will undoubtedly be emotionally exhausting as well.
Just because you are home at the moment and may not be working does not mean that you are equipped to provide 24/7 dementia care. It is okay to acknowledge that sometimes, a professional is required and someone who is not related to your mother may be better able to provide the assistance she needs right now.
Fortunately, caregivers to the elderly are essential and permitted to continue caring for seniors. Here at Warm Embrace, we continue to serve our longstanding clients and we are also equipped to help families who are now finding themselves in need of more care.
It’s almost that time of year again—time to change the clocks!
The springtime change has a hopeful element to it; the days get longer and you have more daylight to enjoy in the evening hours. It almost feels like you can measure the increased daylight every day! It signals that spring is truly on its way.
There is one big challenge first though. That’s the loss of one hour! For most of us, that means the loss of an hour of sleep.
It would seem as though losing one hour of sleep shouldn’t be that detrimental. Surely we can handle one less hour of sleep. And yet, statistics indicate that losing one hour of sleep does impact us, and not for the better. It’s a well-known fact that there is a higher incident rate of automobile collisions on the Monday following the spring time change. Some studies have indicated an increased risk of heart attack too!
If losing one hour of sleep can cause us to drive poorly and increase our risk of heart attack, what does it do for someone with dementia who may not understand what is happening with the time change?
Adjusting to the time change is essentially like dealing with jet lag. While it is only a one-hour difference, it is enough to throw us out of whack for a few days as we slowly adjust. Our bodies are finely tuned mechanisms that follow a very careful circadian rhythm. When that rhythm is interrupted, it takes us a while to get back on track. If that much adjustment is needed for those of us who can cognitively understand the time change, how much more difficult is it for someone with dementia who cannot tell time?
Someone with advanced dementia may not be able to tell time anymore. Some days, it may seem as if they don’t have much routine if they are waking at odd hours and sleeping during the day. But even if their routine has shifted from what it was years ago, they still have an internal sense of the passing of time. Suddenly missing an hour throws off that internal sense, and it can feel disorienting and confusing.
Sleep is critical for brain functioning in all people, and especially so for those with dementia. The brain needs a chance to recover and it is during sleep that memory is encoded. When someone’s brain is impacted by a disease that impairs memory, they may require extra sleep to encode even minimal memory. Sleep is essential, and losing an hour of sleep can have an enormous impact on how someone functions.
As much as possible, try to adjust bedtime and waking time in advance of the time change to make it a more gradual adjustment rather than a one-hour change overnight. On the eve of the time change and the subsequent nights, ensure that your loved one still receives their usual allotment of sleep, even if it means going to bed a bit earlier or getting up a bit later.
When caring for someone with moderate or advanced dementia, just knowing what to expect can make a difference. Recognize that the time change is just like dealing with jet-lag and it will be an adjustment for your loved one. Expect that they may exhibit some unusual behaviour or feel agitated and anxious the week following the time change.
Prepare as much as possible by making the adjustment gradual. And remember, these adjustments will be helpful not only for your loved one but also for you!
Inclusion is a hot topic and a very important one for our elderly population. It emphasizes the importance of inviting the active participation of all citizens, including our elderly population, into our social fabric. Our current social fabric has changed with the pandemic making it difficult for seniors to be active participants. It’s important we protect our elderly population by practicing social distancing and by wearing PPE, but we must also take next steps to protect their wellbeing.
Social Isolation and Loneliness
Studies have found that social isolation and loneliness are major risk factors linked to increased blood pressure, heart disease, diminished immune system, depression, anxiety, and poor cognitive functioning. Social isolation has a profound impact on older adults' health and wellbeing!
The Canadian Network for the Prevention of Elder Abuse (CNPEA) has reported (before COVID-19) that:
Being socially isolated is a common affliction among older adults. More than 30% of Canadian seniors are at risk of becoming socially isolated.
Isolation and loneliness are as bad for your health as smoking 15 cigarettes a day.
And, social isolation can put seniors at increased risk for elder abuse.
What can you do to help?
1. Welcome your elderly loved one into the online world
Don’t assume your elderly loved one can’t use a smartphone, tablet or computer, instead encourage them by writing out instructions so they can connect online with their friends and loved ones. They will pleasantly surprise you! When they get the hang of it pay attention to their feedback and advocate for technological improvements.
Technology is a powerful tool but it needs improvement to include everyone – not just the abled. It’s time for developers and creators to involve older adults and family caregivers in the creation process. There are millions of apps out there but the majority of them aren’t suited for the elderly. The first step, you can take is leaving reviews on google or the app store.
2. Advocate for an age-friendly community
Being age-friendly means that there are no barriers to accessing services in the community, regardless of age or ability. A city that is designed to include and be accessible for its elderly residents is automatically factoring in the needs of its younger population.
For example, if a community is accessible for someone using a walker or wheelchair, it is also accessible to a parent pushing a stroller. The examples that we think of quickly are usually about physical accommodation such as ramps, wider doorways, longer crosswalk signals, accessible parking etc. You can advocate by attending virtual town halls, writing emails to your local MP, and voting at the next municipal elections.
3. Challenge ageist stereotypes and bias
Dr. John Lewis, professor at the University of Waterloo, points out that currently, one-quarter of Waterloo Region’s population is age 55 plus. That number is only going to increase in the next few decades. It is not acceptable that there are ageist prejudices towards 1/4 of our population! If we want to have a community that is inclusive to all members, it needs to be designed to suit those who are age 55 and older.
Often, these issues relate directly to coping with ageism. Ageism is the stereotyping of and prejudices against someone because of their age. It might include automatically treating someone in a certain way, just because they appear to be a senior.
For example, assuming someone is hard of hearing because they have gray hair is an ageist stereotype. Another example is the way that professionals often speak about a senior to their family members, as though the senior is not even in the room! The conversation should be directed to the relevant person, regardless of age.
Age is just a number. There are stories online of incredible seniors thriving in their 80s and even 90s! For example, Gladys Burrill at the age of 86 completed her first Honolulu Marathon. She was also a world traveller, a licensed pilot, an avid hiker and a prolific gardener. Read stories online and share them on social media to challenge ageism and other stereotypes.
4. Respect and include those with Dementia
In addition to physical challenges, some people experience cognitive changes. These people deserve the same level of respect and inclusion as all other members of society. Brenda Hounam, dementia advocate and spokesperson, highly advises communicating about dementia itself. Rather than hiding her challenges with dementia, she has decided to be very public and make others aware of her disease.
Hounam suggests that people “open the doors for communication—just ask”. She feels that it is much better to ask for clarification and to communicate clearly with someone who has dementia; do not just make assumptions. She asks that people do more than just listen; she wants people to truly hear and validate what she is saying. Hounam’s overarching message is that “we are all unique, and we all have something to contribute until the last breath.”
Being inclusive and respectful of all citizens—regardless of age, ability, or illness—better allows us to fully acknowledge and appreciate the contributions of all members of society.
5. Encourage community and support
Your elderly loved one is socially distancing but they don't have to be socially isolated! Reach out to your loved one regularly by chatting on phone or by setting up a safely distanced date. If you can't visit them in person, try contacting an organization for support. At Warm Embrace Elder Care, there are wonderful caregivers who can safely visit your elderly loved one! Our caregivers wear PPE and encourage proper nutrition, physical exercise and mental stimulation.
During this pandemic, social distancing has become a safety protocol but it shouldn't have to coincide with social isolating. Let's take the necessary steps together to protect our elderly population. If you have questions or comments, write a comment below or contact us!
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?
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.
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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 you break down the format of everyday conversation, you might be surprised how much it tends to be an exchange of facts. We’re often using the old-fashioned newspaper reporter method of the W’s: who, what, where and when. Sometimes we also include the “why” and “how”, but often it’s just the first four W’s.
Conversation tends to report on who did what with whom, where they went and when. We depend on each other to convey those “facts” in an accurate way, and we equate that with telling the “truth”. Since we tend to consider “truth” as a value, we place a lot of importance on conveying facts accurately.
The reality is that any of us is only ever conveying our perspective, our experience of the world, our interpretation of events. You know the old saying….” if there are 10 eyewitnesses, there are 10 different accounts”. I might even argue that you’d get 11 or 12 different accounts with 10 eyewitnesses! We each have our own understanding of events or recollection of past events.
Oftentimes, a conversation that includes sharing past memories becomes an exercise of correcting each other’s recollections of the “facts” or telling the “truth”. When different narratives emerge, a lot of effort is spent trying to reconcile those different narratives, assuming only one can be correct; or that details of each need to be merged and one variation decided upon.
The focus on “facts” and telling the “truth” makes conversation very difficult for those with dementia.
Recalling the first 4 W’s is tough: who, what, where and when. When someone’s brain has been impacted by dementia, their ability to recall precise details is impaired. Short term memory no longer encodes details into long term memory. When someone attempts to retrieve the details a few hours or days later, the information is no longer there since it was not encoded into long term memory.
Long term memory that was established decades ago may remain as the strongest memory. Eventually, even long term memories are impacted by the progression of dementia. When those memories are affected, it will be the details and the “facts” of the memory that are first at risk. Someone will continue to remember the feeling associated with a memory, but they can’t necessarily recall who was present, or when it occurred, or where exactly it was. They’re more likely to remember the “why” or the “how” of the event because those elements are typically more connected with the feelings of an event.
When trying to recall a memory, and someone with dementia or Alzheimer’s has an impression of the “why” or “how” of an event, their brain may fill in the gaps on some of the missing “facts” of the story to help it make sense. Their brain may provide a missing “who” or supply the “when” of the story—and those details do not line up with your recollection of the event.
In fact, those supplied details may not line up with the version of the story that the person told yesterday. Each time they retell the story, their brain may have to supply a different missing detail.
Instead of focusing on the “facts” of the story, focus on the feelings.
Don’t worry about correcting the details that may have different from the last telling of the story.
Don’t contradict the details or get worried about the “accuracy” of the story.
Do listen to the “why” and the “how” of the story that starts to emerge.
Let your loved one explore their memory and remember that they are trying to put words to an emotional experience. The emotion of the memory may remain strong, but finding the words to express it can be difficult. If the details they supply keep being corrected by someone else, they may stop trying to articulate what they’re feeling.
Stop and consider: what is the purpose of this conversation?
If it is a nice conversation between you and a parent, then enjoy it for all it is worth! Savour the clear moments, find the emotion underneath the words, and use it as an opportunity to connect. Correcting “facts” will only inhibit the purpose of this conversation—which is to create a connection and convey love and caring.
If it is a conversation with your loved one’s family doctor, then the purpose of the conversation is different. Suddenly, the facts of a particular symptom are critical. In this case, having correct “facts” truly is the purpose of the conversation and being focused on precision is important.
When you consider the purpose of a conversation, you can remain focused on what matters most. If exchanging factually correct information isn’t the point of the conversation, then don’t worry about correcting facts!
If the purpose is to create enjoyment for your loved one, you can achieve that by supporting their feelings and their recollections. Focus on the feelings, not the facts and you’ll find conversations far more enjoyable!