Do you ever find the holidays overwhelming? There are lights and music, decorations and crowds, shopping and cooking, parties and dinners, rich food and alcohol, late nights and busy days— sometimes it feels like you need a holiday to recover from the Christmas season!
If we feel overwhelmed during this season—and we are cognitively well, our brain is fully working—then imagine how overwhelming the holidays may be for someone who has dementia. Someone with dementia may not remember what “Christmas” or “the holidays” mean because they become abstract terms.
Here are some holiday tips to help a loved one with dementia through the holidays!
Beware of Decorations
You see an impressively life-like St. Nicholas welcoming people to your front hallway, but what does your loved one with dementia see? Is she concerned about “the man in the hallway who isn’t having dinner?” Life-like or oversized decorations can be confusing or even scary to someone with dementia. Consider from their perspective how the decorations could be misinterpreted.
Flashing lights draw a mixed response. Some people with dementia are mesmerized by flashing lights; others become alarmed or agitated. Keep consistent bright lighting in all rooms. Dark rooms with candlelight or just the tree lights may be fearful for someone with dementia.
Remove all ornaments that are not edible but look like real food. Fake gingerbread men or houses, fake candy canes or apple ornaments should all be avoided. Someone with dementia may not realize that it is just an ornament and may attempt to eat the decoration.
Have a Quiet Room
You want to include your loved one who has dementia, but you also need to provide a space where they can retreat and have some peace and quiet. People with dementia typically interact best in small groups or one-on-one. If a loved one with dementia is attending a large family gathering, set up a separate room—well lit with comfortable furniture—and recommend that family take turns visiting that person, one at a time. This allows for quality interaction in a way that best matches your loved one’s needs.
Routine is often the first casualty of the holiday season. We stay up late at night, we don’t eat meals at the usual time and we often stray from our usual, healthy diet. Remember how you felt last January after eating heavily and having your routine interrupted? Now imagine someone with dementia. The person with dementia cannot rationalize why they feel different, all they know is that something doesn’t feel right.
As much as possible, keep routine familiar and consistent. Try to maintain regular meal times (even if that means eating separately from the party), and try to limit intake of rich, sugary foods or excessive alcohol. Respect nap times and bedtimes—sleep is as important as ever! By maintaining routine as much as possible, your loved one may be able to better handle the surprises that come with the season
If family members live at a distance, they may be visiting for the first time since the last holiday season. Your loved one may have changed significantly since last holiday season. Advise family and friends in advance so that they know what to expect. Request their assistance in making the holidays easier for your loved one, and outline exactly what you need them to do. Here are some suggestions:
Please do not ask “do you know who I am?” this causes undue stress. While she may not be able to name you, grandma knows you are an important person whom she loves.
Please be aware of the fact that mom now needs to take some time away from the crowd. She finds noise and groups over-whelming. We will have a Quiet Room set up and we invite you to visit mom one at a time in the quiet room.
Please do not encourage alcohol consumption by saying “it’s only one drink!". Dad is now on a medication that does not react well to alcohol and he will not enjoy the event as much when he is trying to process the alcohol.
Set Realistic Expectations
Set realistic expectations for your loved one by limiting the number of events they attend. No more than one event or activity in a given day; only a few in a week with recovery time between events. Step back and try to asses what is realistic for your loved one. Maybe a dinner with 50 people will not be a successful event, but attending a hymn sing would better match your loved one’s preferences and current abilities.
Your loved one will not be able to suddenly do more or handle more because it is the holiday season. If anything, their coping abilities may be taxed and they may become agitated or stressed more easily than usual. Be realistic when scheduling the season.
Select the Top Priority
What is more important—that your loved one attend every event and every tradition is followed in detail, or that your loved one has a merry Christmas feeling loved and happy?
If the top priority is your loved one having a wonderful Christmas season, then focus on the elements that create that sense of joy, peace, and love for them. If you really analyze it, you’ll realize it has nothing to do with decorations or traditions. It has everything to do with family and interaction.
If you are stressed because of holiday prep, your loved one will feel that stress and not enjoy the season. A person with dementia would rather have you slow down, match their pace, and be patient than present a tray with 15 varieties of home-baked cookies that stressed you out!
Your loved one with dementia might enjoy singing a few familiar Christmas carols (because the words of those favourite tunes tend to stick), rather than feel the pressure of keeping up with an animated conversation at a cocktail event.
What will make your loved one smile? When will they seem most at peace? What will have them feeling safe, secure, and loved? Aim to focus on those elements and your loved one will have a truly blessed Christmas.
The holiday season has busy and joyful energy to it. It often feels like there’s a buzz in the air where everyone is rushing somewhere or hurrying to do something.
Many people with dementia are sensitive to the energy and emotional state of those around them. They will often pick up on this energy of hurrying and they may want to help.They’ll want to join in the activity and be part of the buzz of energy.
Human nature desires a sense of purpose.
We want to feel productive and we want to provide meaningful contributions. This sense of wanting to contribute and be helpful and productive is not impacted by many forms of dementia, so people very much want to be involved and be helpful. When someone with dementia can sense that everyone else around them is hurrying to complete tasks, they will want to join in and assist too.
If someone’s functioning level has been impacted, it may be difficult for them to contribute in the ways they did previously. In the past, your father may have gone to select a Christmas tree and cut it down himself, then tie it to the roof rack, drive home, and set the tree up. That may no longer be possible for him to do entirely on his own. Perhaps he doesn’t drive anymore; perhaps his physical strength or sense of direction is impaired.
Even though he cannot complete the task in full, is there a way that he can still be involved in the process? Can he be part of the trip to select the tree? Can he manage some of the cutting? Or hold the tree steady while a grandson saws away? Continuing to involve him in the process will be important to his sense of self-esteem and his need to feel productive.
Many forms of dementia interfere with the brain’s ability to sequence an activity.
Many tasks are actually a series of separate, smaller tasks that must be done in a particular order. Baking, for example, involves many separate tasks that are all sequenced in the right order. Perhaps your mother-in-law baked countless cookies and squares during the holiday season. Now, she makes toast and tea, but not much more. Expecting that she can bake a dozen varieties of cookies is not reasonable, but involving her in a few favourite recipes will help her to shine.
When approaching a complex task like baking, break down each step into a separate task. If there are any tasks that can be a stand-alone job, get your mother-in-law to be in charge of that step. Maybe the walnuts need to be crushed for one recipe. You can get your mother-in-law set up crushing walnuts. It may be faster to do it yourself or tempting to use the electric food processor, but the purpose isn’t to be fast and efficient.
The purpose is to involve your mother-in-law in the traditions that she founded. It’s pretty likely that she didn’t have an electric food processor when she first started baking that recipe. Breaking the walnuts by hand is likely a familiar task from years gone by and something which she can feel successful contributing.
All too often, someone with dementia will say “what can I do?” or perhaps “I don’t know what to do…” and well-meaning family members will respond “you don’t have to do anything! You just relax and sit over here.” In some cases, if someone is overstimulated and needs a break, that might be the kindest option. But in most instances, the person with dementia is genuinely reaching out and wanting to feel productive by contributing something meaningful to all that is going on around them. By finding a task that matches their ability level, you are helping to meet that fundamental human need for productivity.
Remember that the task might not be about doing. It might be more about being—being close to you, being part of the action, being a contributing family member. If many tasks are just too difficult or overwhelming, perhaps they can be involved in a being type of way.
Maybe the dog is overly excited by all of the activity and you can ask your father to hold the dog on his lap and pet the dog to keep him calm. He is being a comfort to the dog…or perhaps the dog is a comfort to him, but either way, they are both content.
Perhaps you’re wrapping presents and the roll of tape keeps disappearing under all the wrapping paper and boxes. Your mother-in-law might like to be the keeper of the tape as you’re wrapping. She’s right there with you and she’s involved in her own way. You may even get to chuckle about how you lose the tape and she’s keeping you on track.
It may take more effort on your part, and it will definitely take more time and some creativity to find tasks that match ability levels and provide meaningful contributions, but the rewards will almost certainly be worth it!
Are you hosting any holiday gatherings where you have invited elderly relatives who have health conditions? You have probably already thought about accessibility accommodations such as helping them into your home and ensuring they have access to a bathroom. Those elements are very important and should not be overlooked.
Another element that should not be overlooked is how to make the overall
environment more manageable for your elderly loved ones, especially when there are health conditions to consider.
If someone has a chronic illness such as CHF or COPD, they may fatigue very quickly and need an opportunity to rest.
If someone has edema in their feet or legs (swelling) they may need a chance to sit with their legs elevated.
A stroke survivor may find the environment overstimulating and may need relief.
Someone with dementia may need some peace and quiet and a break from the noisy environment.
Hearing aids may blur the sounds into a din so that individual voices are difficult to discern, and someone with hearing loss may need an auditory break.
To help facilitate these needs and more, you can create a Quiet Zone for your holiday gathering.
Part of the beauty of a Quiet Zone is that it can meet the needs of so many different health conditions. It is one solution that actually meets numerous needs simultaneously. It may even be appealing to younger family members too!
A Quiet Zone is a space dedicated to quieter interaction and less stimulation. Ideally, the Quiet Zone would be a separate room, but if that’s not possible, then a nook or area that can be allocated as the Quiet Zone.
The Quiet Zone should be less stimulating than the environment of the main event. If there are Christmas carols blasting on repeat in the dining room, the Quiet Zone does not have any music. If the Christmas tree in the living room has blinking lights and a miniature train set zooming past, the Quiet Room has steady, ambient lighting that isn’t distracting.
While the main event likely includes loud chatter, many people speaking at once, laughing, and loud voices to be heard over the din, the Quiet Zone is where people can have one-on-one conversations that can be more easily heard and understood. For relatives of any age, the chance to step away from the noise and engage in a more in-depth one-on-one conversation might be a welcome relief.
Someone who tires easily in a crowded room of people might appreciate the relief of settling into the Quiet Room. Other guests can then take turns, one at a time, visiting within the Quiet Room. This way, everyone is supported to be part of the family gathering, but they can participate in a way that matches their individual needs. Having a space to retreat may allow people to reserve their physical and mental energy to join the group for dinner.
The Quiet Room makes it possible to have a quick cat-nap if needed. Giving the brain an extra boost of sleep can make the difference between enjoying the rest of the event, and just feeling overwhelmed and overstimulated. Family members who are stroke survivors or who have dementia will particularly appreciate the opportunity to have a power nap.
When the brain has been impacted by stroke or dementia, part of the brain may not be working the way it once did. The remaining parts of the brain are functioning on overdrive to compensate for the losses. Those over-active brain areas tire easily and benefit enormously from rest. A Quiet Room creates the space and permission to invite such guests to rest their brains when they need it most.
This holiday season, consider creating a Quiet Room for large family gatherings. The Quiet Room will be a retreat space to ensure that all your guests find the event manageable and can enjoy it fully.
Most of us can agree that the holiday season often ends up feeling frenzied and hectic. We’re fully aware of which season it is, we’re mentally prepared for the change in routine and all the additional activities and events that come with the season, and even still, we seem surprised each season that it’s frenzied and hectic.
Imagine how much more this feeling is magnified for those who have dementia.
The frenzied holiday season feeling may have different causes for you versus your loved one who has dementia, but it is important to acknowledge that the stress is still present regardless. For you, the stress may come from trying to fit too much into too little time—shopping, wrapping presents, decorating, baking, cooking traditional meals, attending extra events, etc.
You might think that someone with dementia is exempt from all this stress, and indeed, they may be blissfully unaware of some of those holiday elements. They may not have a shopping list to attend to, and they may not be worried about decorating or baking, but the holiday season can be stressful in other ways.
For someone with dementia, the ability to preplan and mentally prepare is inhibited. They are not able to reassure themselves that “this is December, and this month tends to be hectic, but it’s just temporary.”
When someone with Alzheimer’s has very limited short term memory, they will not be able to remember your explanation that the change in routine is due to the holiday season. For example, the day program they typically attend two days weekly is cancelled for Christmas Day, Boxing Day and New Year’s Day. Not attending day program for a few weeks will feel disorienting. They will need constant reminders of why and how the routine has changed.
Keeping track of events and holiday gatherings may be challenging or impossible. Looking at a calendar and interpreting what is happening today versus tomorrow versus next week is quite abstract and becomes difficult when someone’s brain is impacted by dementia. A calendar is of limited use when someone has trouble remembering which day it is today. Someone with dementia may not be able to keep track of additional holiday gatherings and events.
Familiar environments suddenly look different now that decorations, trees and blinking lights have been added. For some people, decorations will feel comforting and bring memories of holiday seasons of the past. For others, the sudden change in their familiar environment may feel disorienting.
Likewise, large gatherings can have a disorienting effect. Even when it’s gatherings of family and friends, large groups can be overwhelming for some people. Too many of these gatherings over a short time period can increase someone’s stress level.
People with dementia are often highly sensitive to the emotions of others around them.
If you are highly stressed or feeling frenzied, they will pick up on that emotion and respond to it. If the context is not entirely clear to the person with dementia, they may even conclude that you are stressed or frenzied because of them.
While your loved one may not be keeping track of the shopping list and cooking for the family gathering, they are still experiencing the holiday frenzy, just differently than you are. Be aware of what may be contributing to their stress or disorientation and try to reduce those factors as much as possible. Since you do have the ability to pre-plan, you can mentally prepare yourself for the holiday season knowing that your loved one may have stronger or different reactions than usual because of disrupted routine or change to their environment. Just being prepared for different behaviours, reactions, or functioning levels can make a huge difference.
For more tips on how to support someone with dementia through the holiday season, please click here.
One of your long-standing residents, Jean, has just been discharged after a ten-day stay in hospital. She has been discharged back to your residence, but she has declined considerably in the past 10 days.
She lost quite a bit of her strength from being in bed all day at the hospital, and since she was catheterized, she’s struggling with incontinence now as well. Previously she was independent with personal care and was able to get to the dining room on her own. Now, she’s needing help with toileting and sometimes she’s not even a one-person transfer.
Your care team were already stretched thin across residents with high needs. There are key times of day when you simply don’t have enough staff available all at the same time.
That’s where Warm Embrace comes in.
Jean needs a dedicated caregiver who can attend to her increased needs as she recovers from her hospital stay. If she requires a two-person transfer assist, our caregiver can be one of the two required people. Jean’s caregiver can attend to her toileting needs and assist her in getting to and from the dining room at a time when your staff have many other residents who need help getting to meals.
Jean’s caregiver can work together with her on some strengthening exercises to help her return to a greater state of independence. Of course, the goal is to help Jean remain independent enough to remain in your residence much longer.
If, however, Jean’s medical condition deteriorated while in the hospital to the point that she now qualifies for long term care placement, Jean’s caregiver will provide the assistance she needs while she remains in your residence awaiting placement. With her increased needs, Jean may require more than your staff have the capacity to provide, especially when other residents also have many complex needs.
If you have a resident like Jean who is returning from hospital, you can recommend that they implement a dedicated caregiver from Warm Embrace to help them as they recover. We recognize that our role might vary depending on the goals of the resident and their health. Any combination of the following are possible:
Temporary assistance as your resident recovers from hospitalization/surgery/recent illness until they regain their strength and abilities and no longer need our help
Ongoing support to match your resident’s new ability level and needs, allowing them to remain living in your residence even though their needs have increased.
Crises support if your resident is awaiting long term care placement and their needs have drastically increased.
Our support ensures the resident has all the care they need after returning from the hospital, while also reducing strain on your staff.
The next time you have a resident with a pending hospital discharge, remember to make Warm Embrace part of the planning process and have care in place for a smooth return to your residence.
Bill was a dairy farmer and spent his entire life outside. He was up before sunrise milking cows before the birds had even started chirping. Every evening, he was out milking again. His entire life was set by the rhythm of farm life.
Bill now resides in your long term care home in your secure unit since he is adamant he needs to get outside and milk the cows. With his advanced dementia, he does not realize that he hasn’t milked the cows in nearly 25 years, but his circadian rhythm is indelibly marked by the farm rhythm and he’s bound and determined to get outside.
Of course, Bill is safe on your secure floor and he cannot leave. But as dusk arrives, Bill becomes increasingly agitated as he feels the need to be out on the farm, and his agitation is contagious. He paces the floor back and forth, he looks out each window longingly and he searches for the exit. Other residents can sense his unease and though they don’t know what he’s anxious about, they share the sentiment.
The approaching evening as the sun is setting can be a challenging enough time within long term care as many residents have competing needs at that time of day. Bill’s increasing agitation only compounds those needs.
What Bill really needs is a dedicated caregiver companion who can address his personal needs. A caregiver can take Bill on safe outings, fulfilling his desire to be outside. When evening approaches Bill’s caregiver can reassure him “not to worry, you milked the cows a little early today; everything is fine on the farm.”
His caregiver can keep Bill occupied so that he doesn’t start looking for something to do—his history dictates that if he had a moment of boredom, he cured it by heading out to the barn. Instead of letting Bill feel bored—and likely to want to exit seek—his dedicated caregiver can keep Bill engaged in conversation and activities until dinner time when he typically settles into a routine.
Of course, Bill receives the most direct positive impact from his caregiver, but the incredible part is that he is not the only recipient! Other residents also benefit when Bill is calm and redirected. The source of the anxiousness and agitation that spread contagiously is solved. By extension, staff benefit when residents are content and happy. Bill’s caregiver addresses his emotional need, which frees staff to care for other residents who may be in need.
When you have a resident who is intent on leaving the secure floor, remember that one of the most effective strategies may be a dedicated caregiver who can address emotional needs and redirect attention. The positive impact will have a ripple effect across the entire floor!
How does Daylight Savings impact those with Dementia?
Monday, October 7, 2019
It’s almost that time of year again—time to change the clocks!
Did you think the same thing I did: “Thank goodness I get an extra hour of sleep”? The autumn time change feels easier on the system since we gain extra sleep…but then the darker evenings are a tougher adjustment. The darkness creeping in earlier day by day, and then leaping earlier by an hour can be a tough adjustment.
If adjusting to the time change can take a toll on those of us who can cognitively process it, how much harder is it for someone with dementia?
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 adding an hour throws off that internal sense, and it can feel disorienting and confusing.
The toughest part of the autumn time change is the earlier time for sunset. Dusk can be a challenging time of day for those with dementia, and dusk happening earlier in the day can exacerbate those challenges. For those who experience elements of “sundowning”—where dementia symptoms worsen and agitation increases at sunset—the autumn time change can be a tough transition.
What can you do to ease the transition?
To ease the transition of the time change, turn on all the lights in the late afternoon. Instead of waiting until it is dark and you need the lights to see, turn on all the lights before you truly need them on. Keep the environment well-lit, bright and welcoming. For the person with dementia, it is helpful to be in a well-lit environment that is not confusing with the long shadows that accompany dusk. In many cases, it is also helpful to close all the curtains before sunset, before the streetlights turn on.
In preparation for the autumn time change, you can start turning the lights on earlier in the days and even weeks leading up to the time change. If you start the routine of turning all the lights on by 4 pm, then that routine can remain constant, even when the time changes and dusk are imminent at 4 pm.
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 gradually backing up the time when you turn on all the lights and close the curtains. Once the time change occurs, ensure that you do keep the environment brightly-lit before dusk even arrives.
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!
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?
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 for 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.