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.
Your mother hasn’t been going out as much lately. She even declined a few outings with you recently, which is unlike her. Then you noticed a pair of soiled underwear shoved behind the toilet…and another soiled pair under the bathroom sink.
What she may be hiding is trouble with urinary continence. She may be feeling embarrassed and is trying to hide it, or if she has dementia, she may be confused about how to cope with this new change.
There are many possible reasons and treatments for urinary incontinence. Ensure your mother sees her doctor and speaks openly about what she is experiencing. Many causes of incontinence can be addressed medically, and those should be addressed immediately.
You may be able to suggest some lifestyle adjustments that will help to support your mother’s bladder, rather than irritate it. Read our other blog that addresses natural ways to support the bladder. If your mother has dementia though, the source of her challenge may be related more to her functional abilities than to her bladder directly.
As your mother’s dementia advances, she may not be as responsive to the signals her body is sending. By the time she realizes that her bladder needs relief, it may be too late to respond and she may not be making it to the washroom in time.
Another challenge can be complicated clothing. Buttons, snaps, zippers or belts may be proving a challenge in the washroom. The more barriers there are to quick washroom use, the more likely your mother is to be slowed down and not make it in time. Be especially aware of skirts or dresses with back closures since it may not be self-evident how to undo the zipper. Modified and accessible clothing may make it easier for your mother to be quick and self-sufficient in the washroom. Drawstring or elastic-waistbands are often the easiest to manage.
If your mother’s dementia is advanced, it is possible she is confused about where to find the washroom. Washrooms are not always easy to find, especially for someone with dementia. Often, washroom doors remain closed, even when unoccupied. Someone with dementia may not think to open closed doors to see what is behind the door. They may not have an intuitive sense of where a bathroom is likely to be located within a home or apartment. Although she may have lived in the same home for years, or decades even, dementia can cloud her memory and obscure what was once familiar. If she cannot easily find the washroom, she will not make it in time when nature calls.
Once she is able to locate the washroom, she may be confused about what to do once she’s in there. For some people with advanced dementia, the washroom can feel very confusing and overwhelming. If the toilet seat lid is down, the toilet may not look familiar. A white toilet and white sink may look very similar and can be confusing. A wastepaper basket may seem more familiar and is often mistaken for the toilet itself.
Sometimes people attempt to sit down facing the toilet, rather than with their back to the toilet tank, as it is typically used. Because it feels so unusual when facing backwards, there is no long-term memory to cue what to do next. It can also be dangerous since balance is impacted and there is a risk of falling.
If someone needs cueing through each step of toileting, their apparent challenges with incontinence may be more related to functional abilities and less so to their bladder or bowel function. They may be able to hold their bladder or bowel and may even be aware of when they need a washroom, but the confusion sets in with how to use the washroom. If someone is experiencing functional decline, various support measures can be implemented to promote independent washroom use.
Cue cards can be helpful for those who can read and interpret directions. If your mother is inclined to read instructions and follow the directions, a cue card in the washroom to cue each step may be helpful. In some cases, colour coding the toilet seat vs. the sink can be helpful. Contrasting colours can make it easier to see which item is which. If cue cards and colour coding are insufficient, your mother may need a caregiver to cue her through each step of the toileting process.
When functional ability is preventing someone from toileting successfully, look for which step is causing the confusion, or which component of mobility is posing the challenge.
By solving that specific component, you can help support someone to toilet as independently as possible. Engaging the support of a professional caregiver may also help in identifying precisely where the needs exist. For more ideas on supporting independent toileting and continence, contact us at Warm Embrace Elder Care.
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.
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!
When someone has advanced dementia, their ability to complete tasks may become impaired, but their desire to have an important role and care for others often remains strong. While they may require quite a bit of assistance themselves, they are keen to offer assistance in return.
Caring for others is a deeply rooted desire for many people that persists throughout the journey with dementia. Simply trying to tell someone “you’re retired and you don’t have to worry about anything!” often produces more agitation. Instead, figure out how to tap into that desire to help for even better results.
One option is to provide doll therapy.
Doll therapy allows someone with dementia to care for a doll as though it were a baby. For some people, this can be highly effective and meaningful since it connects with identify—someone’s identity as a parent or a caregiver.
In some cases, a regular doll is sufficient. In other cases, a true therapy doll is more effective. A therapy doll is designed to be as life-like as possible. The doll is weighted so it feels similar to holding an actual baby. Most are designed to look like a peacefully sleeping infant.
The ways that people interact with their own personal therapy doll can vary significantly. We served two different clients, Mildred and Betty who each resided in long term care and had a therapy doll, but their forms of interaction with their dolls differed. In each case, we let the client initiate the interaction with the doll and we matched their interaction.
Mildred treated her therapy doll as though it were a real child. She held the baby properly and laid it down to nap peacefully. In this case, we mimicked Mildred’s interactions and also treated the doll as though it were real. Often, Mildred wanted to put the baby’s needs above her own—she would decline to go to the dining room for dinner since the baby was sleeping and she didn’t want to disturb a sleeping baby. In this case, we offered to hold the baby during dinner so Mildred could eat. We went together with Mildred to the dining room and sat by her table, holding the doll where she could keep an eye on her baby during mealtime.
Betty had quite a different interaction with her doll. Betty always wanted to have her doll nearby, but she didn’t always hold it the way one would hold a child. Sometimes she’d pick the doll up by its head, or carry the doll around in a plastic grocery bag. She was comforted by having the doll nearby, but she didn’t interact with it as though it were real. Out of respect for Betty, we handled the doll carefully, but rocking the doll throughout dinner wasn’t necessary for Betty’s peace of mind.
When interacting with someone who is soothed by doll therapy, always ensure that you act as though the doll is a real baby. Offer to hold the baby, and hold it correctly as you would a real child. If someone is upset their therapy doll is not within sight, provide an explanation that would make sense if it were a real baby.
Saying “it doesn’t matter where the baby is—it’s just a doll!” can be quite upsetting. Instead, saying “oh, your baby is having a nap and the nurses are keeping an eye on her. Best to let the sleeping baby sleep.” Your reassurance with an explanation that fits the scenario will provide more peace of mind.
Therapy dolls can meet someone’s need to nurture and care for others. It isn’t only women who have a need to nurture. Many elderly men with dementia do very well with a therapy doll as well. One gentleman we met, Dyck, was rather despondent. He wasn’t interested in joining any of the activities in the long term care home he had just moved into. He was even trying to avoid some mealtimes.
The introduction of a therapy doll completely changed his demeanour. He was proud of his new role and was keen to show off his baby to others. When staff and visitors would say: “Good morning Dyck, how is your baby today?” he would proudly respond “she slept through the night again!” The tactile comfort of carrying the baby, joined with the sense of purpose and newfound caregiving role helped Dyck with his transition into long term care.
Doll therapy does not have universal appeal. Many people are not at all interested in carrying a doll; others are very well aware it is a doll and not a real baby; others still become so preoccupied with the doll that it can become problematic. Some people become concerned that the baby is sleeping all the time and they’re concerned when they cannot wake the doll. The inverse can happen too if the doll is designed to look like it’s awake—a concern that the doll never sleeps. If someone is distressed in any way by the details, then doll therapy may not be ideal for them.
The next time you’re in a long term care home and you see someone carrying a baby doll, remember that it could be a therapy doll and you should treat it as though it’s a real child. Ask the person holding the doll about their baby—you will likely see them perk right up and be very proud to tell you more. While doll therapy certainly isn’t for everyone, it can be a great comfort and benefit to those seeing a nurturing role.
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!
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.