(This article is by my colleague Paula Spencer Scott, author of the book Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers. I invited her to share an article on this topic, since many in our community are coping with dementia behaviors. — L. Kernisan)
The odd behaviors of Alzheimer’s and other dementias can be so frustrating and stressful for families.
I’m talking about the kinds of behaviors that try patience, fray relationships, and drive us in desperate search of help:
“First she thinks the caregiver is stealing her sunglasses and now she accused me of having an affair.”
“When I tried to help Dad wash up, he hit me.”
“My husband follows me so closely I can’t stand it. But if I go in another room he’ll wander out of the house.”
“Mom started unbuttoning her shirt in the middle of the restaurant!”
“Just when I’m completely exhausted at the end of the day, he seems to get revved up. He keeps peeking out the windows, convinced that someone is trying to break in. Now he won’t sleep.”
A common approach to difficult behaviors is to go right to medicating them with tranquilizers, sedatives, or antipsychotics. But that’s risky and often not what’s best.
In fact, experts recommend trying behavior management first, and for good reasons: It tends to be more effective in the long run than “chemical restraints,” has no dangerous side effects, and leads to a better care relationship. But people often don’t know how to do this.
I’ve learned how.
I’ve lived through five close family members’ experiences with Alzheimer’s and other forms of dementia. Lots of trial and error, and insights from dozens of top dementia experts (whose brains I’ve been lucky to pick as a journalist and dementia educator), got me through regular scenes with…
- My father-in-law, who needed a walker to move yet spent hour after hour for several days straight hauling all his clothes and toiletries from his room to our driveway, insisting that his (imaginary) new wife was about to pick him up
- My dad, a formerly sharp dresser who wore the same shirt and pants every day no matter how dirty
- My grandmother, who insisted on going “home,” when she was home
- And other relatives, in dozens of similar scenes.
In this article, I want to share what I wish someone had explained to me early on: the “Why-This, Try-This” approach to dealing with difficult behaviors.
This is a mental framework that can help you get unstuck from unproductive responses that get you nowhere or make things worse.
It can bring calm -– to both of you — whether the issue is verbal or physical aggression, agitation, confusion, wandering, disinhibition, delusions, hallucinations, or a restless or repetitive behavior (like pacing, shadowing, rummaging). It also works well with milder irritants like repetitive questions and indecision.
Then, I’ll boil down the Why-This, Try-This concept to a 7-step process you can use every time. These “7 R”s give you a basic platform for responding to any frustrating behavior:
- Reassure the person
- Review the possible causes
- Remove any triggers
- Redirect behavior or attention
- Restore yourself
- Review what happened
- Reach out for help as needed
The “Why-This, Try-This” Approach
You can’t reason with the person to get out of these situations.
You need to look for the reason why it’s happening in the first place.
To turn things around, consider:
- WHY This? There’s almost always a “WHY” behind a dementia behavior.
- TRY This! Build off that insight to TRY different ways of shifting the behavior to something less intense, more appropriate, or more positive.
Believe it or not, there actually is a “why” behind nearly all dementia behavior. Often there are multiple reasons at once.
Fundamentally, a challenging behavior is a reaction to a set of circumstances, expressing something that the person may be otherwise unable to convey.
As cognitive and communication abilities wane, it becomes harder for a person with Alzheimer’s to say things like, “I’m confused” or “I’m feeling anxious” or “I just want to be left alone.”
The natural response to all these challenges is frustration, defensiveness, anger, anxiety, or fear. We all act on certain ways when we’re feeling uneasy, mad, insecure, frustrated and so on. These are magnified in someone with dementia, who is even less equipped to deal.
Certain types of dementia can bring added stressors. With Lewy body dementia, for example, visual hallucinations are common. With frontotemporal dementia, impulse control erodes, so you’re more likely to encounter problems like uncharacteristic cursing or sexual behaviors.
Just reminding yourself that there IS a “why” can help extend your empathy and patience.
There’s no single right way to respond to most situations. In many cases, several different things could work, depending on the person and the circumstances.
But here’s what pretty much never works: things like sharp words, attempting to reason with the person, or worse yet, using force.
Instead you’ll need words and actions that are more gentle, more loving – and yep, sometimes downright creative. Although you can’t always stop an irritating behavior, you often can make it less bothersome, safer, or more acceptable, and even over time lower its frequency.
Be ready to do some trial-and-error. If one response isn’t doing the trick, you can almost always try something else that will.
Now with this “Why-This, Try-This” framework in mind, let’s go through the seven steps you can use to put this in action.
7 steps to managing difficult dementia behaviors
1. REASSURE the person
The hard truth: the person with dementia can’t change the way he or she is. You have to change — your reaction and the environment or situation.
So putting the person first in your thinking as you react is paramount.
Reassuring brings anxiety, upset, or other stress down a notch. It communicates I’m on your side. I take you seriously. Not feeling understood makes anyone more distressed. For someone with dementia, you create a floor to what must feel like bottomless uneasiness.
The catch: To reassure someone else, we first have to collect our own feelings. This can be hard because these are almost always emotionally charged situations!
It’s easy to feel annoyed when your parent is about to drive off yet another caregiver with false accusations. Or scared when your spouse lashes out or hits. Or embarrassed when Mom’s blouse comes off. Or worried Dad will fall or get lost. We want to REACT!
Showing emotional intensity only makes things worse. It puts the other person on the defensive and adds to their instability (more combative, less cooperative). Also, people with dementia tend to be very sensitive to others’ moods, mirroring their demeanor. If you’re upset, they’re apt to continue to be upset or become more upset. If you’re calm and reassuring, you have a much better chance of transmitting that state.
And avoid making the mistake of assuming they’ll forget your angry moment. Research suggests that although people with dementia quickly forget what was said, the emotional impact of an encounter (whether it was negative or positive) lingers for much longer.
How to reassure:
Collect yourself. Do whatever works for you but know that it’s useful to have a “go to” strategy before you dive in. Examples: Take a deep breath. Count silently to three. Have a “silent scream” in the bathroom. I’d consciously remind myself, “It’s not him (or her); it’s the dementia!”— and I needed to enter my relative’s reality.
Approach slowly and from the front. You’re less likely to startle, confuse, or provoke.
Avoid urging, “Calm down!” Seems like the most natural response in the world, right? But when someone is feeling out of control, it’s like grease on fire. It feels dismissive, rather than reassuring. Also avoid asking, “What’s wrong?” The person with dementia likely can’t articulate it and is left feeling more helpless, rather than helped.
Stop yourself from reacting with logic (no matter how tempting). You CANNOT reason with the person, win an argument, or use facts or “proof” to prove your point. It won’t work. So set that impulse aside.
Respond to the emotion being expressed, rather than the behavior. Instead of saying things like, “Don’t do that!” or “What are you doing?!” focus on validating the person’s mood as you assess the situation.
Even before you understand what’s going on, you can play back what you think they’re feeling: “You sound upset.” “You look like you’re in a hurry.” “You look sad; can I help?” “I know this bothers you a lot. Let me see how I can help.”
Some people respond to a special saying or soothing mantra that you can repeat as needed: “I’m here.” “Everything’s all right.” “Not to worry, love.”
Use body language that matches your words. More than half of any message we give (to anyone) is conveyed nonverbally. But this is especially true when someone has dementia. Avoid sighing or rolling your eyes. Relax your posture. Make eye contact. Smile. Nod. Use a friendly tone of voice. All make the listener more open to what you have to say. Touch can also reassure and guide, such as lightly placing your fingers on a forearm, outstretching your hand in invitation, or putting an arm around a shoulder.
2. REVIEW the possible causes
Upsetting behaviors are seldom done “on purpose” or to spite you or annoy you. That requires a sophisticated level of cognition that the person with dementia is struggling to maintain or has more likely lost.
Usually, several factors together influence behavior. My widower father-in-law, lonely and probably bored, and prone to delusions, invented several wives; he’d waken from a nap (where maybe he dreamt about them) and expect one to be in the room. If she wasn’t, she must have “stepped out” or “went in the hospital” and he needed get there PRONTO! Eroded thinking skills make it hard to process reality.
Another common example: Someone who misplaces her sunglasses can’t mentally retrace her steps to figure out where she left them, so she explains away the gap as theft.
How to try to understand the “WHY”:
Consider the timing. Is this a change that’s come on over recent hours or perhaps the last few days? Suspect delirium due to illness, or something about the immediate situation. A recent change in medications could also be the culprit.
Ask yourself if there’s a pattern to when or where the problem seems to happen. Is there something about the light, noise, or activity at that time (or place) that’s different? A common escalation of restless behaviors in late afternoon or early evening is known as sundowning (as in, when the sun goes down). One theory is that there’s a disruption of the body clock in some people with dementia related to light. Vision problems, low lighting, shadows, and fatigue can all increase sundown syndrome.
Make a mental sweep of what’s new or different that might have set the person off. Was there a change in routine? A new aide? A changed or new prescription? Houseguests? Are there other symptoms of illness?
Consider possible unmet needs. At the root of odd behaviors is often:
- A basic physical need. Hunger makes anyone hangry—and people with dementia often forget to eat or get distracted easily during meals. Does an incontinence product need to be changed? Is the space particularly hot or cold for how the person is dressed? A poor night’s sleep, or chronic bad sleep, adds confusion and crankiness by day and leads to exaggerated reactions.
- Pain. People with dementia are notoriously bad at reporting pain. If you ask, you might hear “no.” Watch for body language, like wincing, moaning, or rubbing/favoring a body part (like an arm, forehead, or side). Less obvious sources to consider include ill-fitting dentures, tooth decay, cuts or sores on the feet from poorly fitting shoes or diabetic ulcers, and pressure sores from sitting or lying in one spot.
- Another physical cause. Constipation or mild dehydration can easily influence dementia behavior.
- Overstimulation. Are there a lot of people around? Fast-paced activity? A need to rush? Too much going on can fuel anxiety and meltdowns. What’s the sound level? Background noise (even things like a dishwasher running) can make it hard to hear, adding frustration for someone who already has trouble following conversations.
- Understimulation/boredom. Many repetitive behaviors (pacing, skin picking, rummaging) have roots in not having enough to do. They become default modes that provide both stimulation and comfort, even if they drive others crazy. Wandering is often the expression of an old habit (walking or driving, feeling free and mobile) coupled with a need for stimulation. People who have been busy their whole lives, such as caring for a family or working at a job, have a deep-wired yearning to stay busy.
- Frustration. Is the activity at hand frustrating because it’s too challenging or the person can’t remember how? Does he feel misunderstood when no one believes a delusion? The struggle to keep up and hold it together all day can take a toll; the person snaps.
- Feeling unsafe or insecure. A new situation (a different aide, a crowded public place) or a deviation from routine (air travel, a doctor appointment during nap time) can fuel anxiety or fear. Hallucinations or physical issues can create unnerving misperceptions; poor vision can turn shadows ominous, for example. Someone who feels unsure, threatened, or taken by surprise might lash out verbally or physically.
Ask the person questions that show you’re on their side—which might also yield clues to what’s going on. Avoid “Why?” because the person can’t articulate feelings and motives. (“Why do you think that?’ “Why are you doing that?”)
Better: Interested questions that use the other W’s (who, what, when, where). “When did you notice?” “Where did she go?”
Riff off what they’re saying or doing: To someone insistent on going home, you might ask, “Who’s at home?” or “What would you like to do when you get home?” With a wanderer, the conversation might go like this: “Where do you need to go?” “To work.” “What will you do at work?” “Meetings!” “Oh, what are the meetings about today?”
Four terrific words to use: “Tell me about it.” It’s a respectful, open-ended way to gather info and insight.
3. REMOVE any triggers
By eliminating what sets off a behavior, you might be able to end it.
My father kept taking a stopped clock off the wall every time he walked past it. I mean every time! He wanted to repair it but had lost the thinking skills to follow-through. Stupidly, I kept putting it back up—until I realized it was directly in his line of vision on his way to the bathroom, a visual reminder all day long of his need to “fix” it. I moved the clock. Out of sight, out of mind, problem solved.
Common triggers for difficult behaviors:
Many triggers for dementia behaviors will fall into one of the following categories:
Visual triggers. They’re common and easiest to address (like my dad and the clock). Some wanderers are triggered by the sight of keys or a coat by a door, for example; relocate them to another spot. Repeated comments and questions often have a visual trigger.
Activity triggers. At dinnertime, my mother-in-law used to ask over and over, “Should I be doing something?” The sounds of meal prep cued her deeply wired habit to be busy and productive. Told no, everything was fine, she’d say okay…and then ask again a few seconds later. Once we found a way to give her a task—even something as simple as stirring a pot or folding a single napkin repeatedly—her anxious questioning improved.
Misperception triggers. A man who’s combative during bathing may misinterpret the help gestures as an invasion of privacy. An aggressive person is often saying, “I’m overwhelmed and out of control.” Withdraw, even if the action seemed (to you) as mild as offering a washcloth. Try again another time.
Sensory misperceptions can also occur. If streetlights and tree shadows look like people, close the curtains after dark. If tree branches are striking the house, have them trimmed or play soothing, favored music in the evening.
It’s also fair to use “therapeutic lying”—a white lie that enters their reality: “The police are checking to make sure everything is safe.” No longer recognizing one’s own reflection in a mirror is common. Thinking you see a stranger in the bathroom is understandably agitating; it it’s upsetting, remove or cover the mirror.
Discomfort triggers. Address the source: food for hunger, a fan if it’s hot. Don’t overlook glare, feeling personally crowded, or pain. Sometimes stripping happens when fabric is itchy or the style uncomfortable. If unbuttoning becomes a nervous tic, switch to pullovers or back buttons that are harder to remove. A “fidget quilt” with buttons and zippers can be an effective substitute for busy hands.
Frustration triggers. Sometimes when you “give” in fantasy what you can’t in reality, it soothes the distress of not feeling understood: “Oh I wish we could go to that old house right this minute. Let’s plan what we’d do there.”
To get my father-in-law to stop hauling his worldly goods to the curb via walker, we finally stopped putting them back at night. We told him we’d store them in the garage because it looked like rain. He was satisfied (we’d listened!) and this, with the visual trigger of the goods gone, stopped his back-and-forthing. If an activity is beyond ability, offer support or casually end it. Retreat and rest is key when just trying to keep it together all day overwhelm.
4. REDIRECT behavior or attention
You may also need to break the loop of upset by redirecting the person’s behavior or attention. To redirect literally means to change the direction of things. Your goal is to move away from the stressful thing and toward calm.
The many different ways to do this are all most effective once you’ve invested a little time reassuring and calmly connecting with the person. Validating my father-in-law’s perceptions always calmed him at least a little bit, putting him in a more receptive frame of mind to then be diverted by some cookies or opera music.
Some ways to redirect:
Introduce a diversion without belaboring the reason for it: “Hey, I have an idea, let’s….” “Oh wow, look at the funny birds at the birdfeeder….” “Dad, I need your help with….”
Offer a choice of two things the person likes to do: “Would you rather eat your ice cream now or rock on the porch with me?” For someone who has difficulty making choices, express it as a yes/no question: “Are you ready for your ice cream?”
Lead the person to a change in scenery. It might be a different chair, another room, or from inside to outdoors. You can’t physically force them along, which only creates more stress. Instead, try using body language. Beckon and offer your hand. “Where are we going?” the person may ask. “It’s a surprise,” you say. That word alone can be diverting—everyone’s intrigued by a surprise. (The “surprise” can be as simple as a snack, a look at clouds, a YouTube baby video, or a baseball game on TV.)
Shift to an entirely different kind of activity. Sensory experiences, like playing music, gardening, rocking in a rocking chair, or helping to prepare food, are known to bring positive emotional associations.
Use bridge phrases to change the topic of conversation. Certain transitional words “build a bridge” to a new direction—away from the thought or image that got the person stuck. “It’s a mystery about your sunglasses. But that reminds me of the time you bought them for that wonderful whale-watching trip and the whale splashed us.”
This approach is handy when someone is stuck on a repetitive question or comment. More examples:
What I’d really like to know is….
Yes, that’s true, and…
You know, I’ve also heard that…
Steer toward a cheerful past. Some people are soothed by comfort objects, like a stuffed animal to pet, a doll to hold, a toolbox to arrange—often things linked with positive memories of their past. You have to use trial and error to see what’s effective but respectful in an individual case. Music, sports games, or talk of weddings (any wedding!) are among popular topics for revisiting.
You know the person best. Even when dementia has altered personality, many core preferences, motivations, and traits remain and you can work with these to find a solution.
5. RESTORE yourself
When a rough episode is over, give yourself a moment. Collect yourself. Give yourself some credit. There’s a tendency to focus only on the person with dementia, but it’s really fortifying to pay attention to yourself, too.
Take a few deep breaths. Scrawl in a journal. Text a friend. Go back in that bathroom for another silent scream. Anything that lets off some of the stress that even a well-handled incident can create.
And one more thing: Go easy on yourself going forward.
You’ll say or do things that don’t help. You won’t see a crazy situation coming. You’ll feel blindsided. You’ll lose patience and complain to your friends. You might even yell or lose it. I know because I’ve done all those things.
It’s okay. Self-kindness isn’t optional. It gives you the patience and resilience that caregiving requires.
A few things that help:
- MORE hands-on help. 365/24/7 dementia care is impossible to provide solo. Can you have groceries delivered? Find someone to cut hair at home? Have you researched local support programs through your Area Agency on Aging?
- MORE downtime. Even 15 minutes a day helps, or one long weekly stretch. Look for respite from a hired elder companion, a volunteer, or an adult day program.
- MORE stress outlets. Among the best: Sleep, exercise, friendships, safe places to vent and share your frustrations. Support groups – whether in virtual communities or a local group – have the added benefit of being places where you can pick up tips as well as let off steam.
Remind yourself, “I’m only human.” Celebrate small victories and “good enough” care.
6. REVIEW what happened
You can’t always know what ignited a crazy behavior. But once you’re in the habit of searching for clues, you’ll start to gain insight into the possibilities. And this, in turn, can help you nip future problems more quickly, or prevent them.
Try keeping a written log of incidents. Jot down what happened, the time of day, anything unusual you remember about what was going on, and what seemed to help. You think you’ll remember, but in the stress of everyday dementia care, incidents run together. You’ll be better able to track patterns. Having a record of frequency is also helpful if you need to involve medical help.
Two other things are worth mentioning for their power to help prevent extreme behaviors:
1.Routine. The more patterned the day, the less off-kilter your loved one. Routines are reassuring and serve as timekeepers for someone whose sense of time is eroding. It’s best to stay close to former routines—morning showers, if that’s been a lifelong habit, for example. Within reason, a little flexibility and spontaneity can be fun, but hew as regularly as you can to meals and bedtime.
2. Activity. Physical and mental stimulation won’t prevent dementia’s progression at this point. But the effects of movement on mood and sleep, especially, are strong. Build some kind of exercise into every day, even if it’s just walking around the house. Exposure to daylight can also help with sleep. Try not to do everything for the person or park them in front of the TV endlessly. You don’t have to play cruise director—few of us have time for that. You may find, though, that weaving stimulating activities into the day takes less effort than dealing with problematic behaviors they can help you avoid.
7. REACH out for more help
Depending on what you’re dealing with, you may need reinforcements to help you address the behavior.
First, look for help figuring out non-drug approaches to dementia behaviors. Some ideas:
- Virtual communities for dementia caregivers
- Local Alzheimer’s (or other dementia) support groups
- Consultations with a dementia-care expert, like a geriatric care manager
- A course or workshop you can take
- Books about dementia care. In my book Surviving Alzheimer’s, for example, dozens of different behaviors are discussed in depth, with specific tactics to try for each.
Finally, talk to the person’s doctor. He or she can evaluate health-related causes and explore other approaches. Medication for dementia behaviors isn’t a first resort and is often risky, but sometimes works.
Two top reasons to get medical help quickly:
If you feel unsafe (due to aggression, violence, or unpredictable behaviors). When behavior management doesn’t stop hitting, lashing out, throwing things, or other kinds of violence and threats, reporting them to the person’s doctor is the kinder and safer path. Keep yourself safe! Medications may be justified.
If the person’s sleep issues are undermining your sleep.If the person with dementia is disrupting sleep for the whole household, tell his or her doctor. There are ways to optimize the sleep of someone with dementia – and solving a sleep problem improves the quality of life for everyone involved. You may also want to get yourself a checkup, to make sure that you’ve been checked for common medical problems that can worsen sleep.
Why NOT Try This?
Challenging dementia behaviors can be super-stressful. (I’ve called them worse things in my personal experience!) This basic approach can help stretch your patience and move you both toward a more peaceful quality of life.
Best of all, you can start using the “Why-This, Try-This” approach right away, even if you’ve been responding differently before.
To make these steps simple to refer to, I’ve compiled a free downloadable PDF, “7 Steps to Managing Difficult Dementia Behaviors — Without Medication, A Surviving Alzheimer’s Cheatsheet.”
Questions, suggestions, or “try” tips that work well for you? Please post them below!
Paula Spencer Scott is the author of Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers . You can learn more at survivingalz.com.
Related articles & resources:
067 – Interview: Managing Difficult Alzheimer’s Behaviors Without Medications (podcast)
5 Types of Medication Used to Treat Difficult Dementia Behaviors
Practical Information on Dementia, including Alzheimer’s (BHWA topic page)
Ken Duffield says
We are both 80. Married with no rocky parts. My wife is 5 years plus since being diagnosed. We’re both in good health and I’ve a lot of support both on the ElderCare side and family. What I don’t see in advice sources is how I make the break where she needs to be someplace because I just can’t manage. Just considering it offers a lot of guilt because it seems selfish on my part. There are places where we can move that have memory facilities from part time to full time. I’m not ready to move there. I have a sailboat I use, I ride a motorcycle and I want to go to a movie a play, a few days away or volunteer in my community. I DON’T want to move to an apartment, a pool, play shuffleboard, play bridge etc. I’m looking for guidance in managing that hurdle and knowing how high it is for me to make the move to a facility that can manage. It isn’t a matter of the cost, only my ability to know when I cannot manage and getting over the emotional wall in making this change.
Nicole Didyk, MD says
You’re speaking to a very common dilemma for someone whose partner is living with dementia. There’s no right answer that works for everyone.
In my practice, many times partners live separately based on their needs, and it works well. This can also allow the partner living with dementia to make new friends and get to know staff at a retirement home or assisted living. It may also be possible to find a home where your wife could be supported and you could continue to do activities you need for your health (like sailing).
It will be emotional when the time to move comes, and you won’t need to go through it alone. Many others are in your shoes.
A Geriatric Care Manager might or a social worker might be able to help you navigate some of the options. Look after yourself and I wish you the best.
A very good read. I’ve been trying to apply these techniques with my mother who has Alzheimer’s and they work for a good portion.
She frequently sundowns around 4:30 regardless of light level and it’s challenging for me personally to help her relax. I’ve seen some of the other comments about finding triggers so I will continue to be on the lookout for how to prevent/manage her triggers. At least I know when it happens so that’s half the battle.
I’ve also gotten good at accepting blame for lesser issues she perceives. “I’m sorry mom, I did that. That was unnerving wasn’t it? I’ll try not to do that again. Thank you for your patience.” That helps a lot.
Nicole Didyk, MD says
Thanks for sharing your experience and some great advice! It sounds like you’re a very attentive care partner for your mother, and it’s so good that you’re open to learning more.
You’ve probably heard the phrase: “Don’t correct – connect.” When you validate your mother’s concerns and “accept blame”, you are reassuring her that you take her seriously and value her comfort. Well done!
We moved my 79 y/o father to Florida with us 5 years ago. The symptoms have gotten worse lately, paranoid behavior that someone is going to take him away. Or someone is going to move his bed, someone else is going to sleep in it. He gets very agitated and wants to leave the house before someone can come and take him away.. In addition about 1 year ago we have a young man renting a room upstairs in our home, he moved out. During that time my father insisted and truly believed the young man was beating him and dragging him across the floor in the middle of the evening. (we have cameras throughout our home) The young man moved out it to be with his girlfriend and it was for the best. However since that time (1 year ago) dad repeatedly believes he is still here and that he is going to harm him. Ive tried multiple approaches, stating no worries, your safe, he moved a year ago to Chicago.
I can not get him out of that thought process that he is going to be harmed, taken or that the young man still lives here. Why does he believe someone is moving his bed or he asked who is sleeping in my bed tonight? I reply daddy this is your bedroom, my room is across the hall and your safe. Any suggestions, he wakes up and goes to bed with the same fearful thoughts.
Also he sleeps all day, wakes for meals and meds angry and confused and in the evening he is pleasant to me and more alert but the paranoia still presents itself. Thank you kindly J.M
Nicole Didyk, MD says
You don’t mention if your dad is living with dementia, but the symptoms you describe would be in keeping with that. It sounds like delusional thinking.
It’s also vital to make sure there isn’t something else going on, like a delirium.
Trying to use logic or convince someone with dementia that they have nothing to worry about is a losing battle. The idea that someone is trying to hurt the person with dementia is very real to them and arguing can only escalate things. I like the phrase: “Don’t correct – connect”. I would suggest validating the person’s point of view and trying to distract them with something familiar and reassuring.
Dr. K has may more suggestions in her Helping Older Parents Membership and hew new book: “When your aging parent starts needing help.”
You can learn more about the course here: https://betterhealthwhileaging.net/education-and-support/helping-older-parents-membership-waitlist/
and the book here: https://betterhealthwhileaging.net/education-and-support/when-your-aging-parent-needs-help/
Nadene Mccaw says
Your comments are very hopeful. My husbands personality and behavior literally changed overnight. Two nights ago he started having conversations out loud, all night. During the day too. He has always eaten 3 meals a day but has hardly eaten anything the last two days (when all the changes started). He has walked very slowly for a long time but now he can hardly walk at all, even with my help. Getting his wet pull|ups off is almost impossible because he can’t pick his feet up long enough to get dry clothes o him. Also this morning I tried giving him his pills as usual, I put one large pill in his mouth and gave him a glass of water to swallow the pill and he pushed it away and chewed the pill up and swallowed without water. I haven’t been able to give him the rest of the pills with water. I am at a loss right now.
Nicole Didyk, MD says
A sudden change like you describe can be a delirium, which is always caused by a medical issue like an infection, medication side effect, or a flare up of a chropnic disease. Dr. K has a good article about delirium here: https://betterhealthwhileaging.net/what-is-delirium-10-things-to-know/
If delirium has been ruled out, it’s possible that this is progression of dementia, which can sometimes happen more rapidly, depending on the type of dementia and other medical issues. This is a good time to reach out to your medical and social support systems and see if there are additionla resources to help.
As dementia progresses, it can be a good time to try to reduce a medication list to the absolute necessities, to make life simpler and more comfortable.
I hope you get some help and can continue to care for your husband at home.
My husband was diagnosed with dementia in 2014. We have gone through many and varied behaviors and cycles. He continues to be a joy to me. Currently – he is basically incontinent although there are times that he realizes his bowels are moving or about to and will get up to look for the bathroom. (I have been told he is in the late stages.). When he does this, there is usually a successful outcome. However, there appear to be times he has a bowel movement without realizing it (and often, but not always, if one of our ‘friends’ are here that work with him or help me). I will smell it and try to get him into the bathroom. Most of the time he refuses and I can do nothing until bedtime. Of course, by that time he is sore and lately, the pain of the soreness is greater. I have some great products which appear to at least heal the soreness during the night. Skin breakdown is a huge concern; he is fortunate to have healthy skin. Seven Steps to Managing Behaviors does not seem to fit this particular issue. Do you have any other suggestions? I am anguished that I am unable to solve this issue for him.
Nicole Didyk, MD says
Hi Karen and thanks for sharing your story. I can understand that it’s causing anguish.
Keeping a person living with later stage dementia clean and dry can be a challenge. Here are some tips from the Alzheimer Society of Canada: https://alzheimer.ca/sites/default/files/documents/Personal-care_Toileting-tips-and-strategies_Alzheimer-Society-Canada.pdf
A good strategy can be trying to offer a bathroom visit when the person is more likely to have a bowel movement, such as after a meal or morning coffee. For some, using a regimen of laxatives can promote a more predictable bowel schedule, but I would talk to a doctor or pharmacist first.
I hope you make some progress with this issue!
Lynda Nickerson says
My husband is fine when he first gets up. Then about hour or so in the morning, but then very quickly turns verily abusive, convinced he doesn’t live home even though we’ve been here 20 years. Then he’s convinced that we took his mother’s car and we are going to jail. This has been going on for about 6 months. I’m at the end of my rope. He’s beenong very nasty and demeaning to and about. Like I’m his enemy. But toward the evening he is like his old self . The mood swings are so bad that every morning he has me crying for 2 to 3 hours.
Nicole Didyk, MD says
I’m sorry to hear that you’re on the receiving end of this behaviour.
You don’t mention if your husband is living with dementia, but the responses that you describe can be a part of Alzheimer’s and other dementias.
In dementia, all behaviour is a response to some unmet need, whether it’s an untreated major depression, physical discomfort or emotional stress. If there are any Geriatric Medicine services in your area, I would ask your primary care provider for a referral.
Meanwhile, you’ve already done well to notice a pattern in the timing of his behaviour change. This might help to identify what his triggers are (is it when he’s hungry for lunch, for example?). Try to remember that it’s not about the car or the house, it’s another unmet need, and arguing almost never helps.
Brenda Kidd says
This is not a reply but a question.
My husband becomes very combative physically whenever we (care giver and I) try to bathe him, etc. He is bed bound and incontinent.
He is currently in the hospital and they can’t treat him as wished because he fights them continually.
He is not otherwise agitated so I know it’s when invading his private space and that he is also in some pain ( wincing, etc.)
Any suggestions how how to handle this? It is preventing him from getting the proper care he needs. Thank you.
Nicole Didyk, MD says
Brenda, that must be so hard to see, especially now that he’s in hospital.
It sounds like you know your husband very well, and can tell that the triggers for his responses include pain and having his privacy compromised. Sharing this information with the hospital team could really help them to give him the approach and treatment that he needs, rather than a sedative. They may also have a behaviour specialist or Geriatrician available who could consult with the team. I made a video about responsive behaviours in dementia which you can watch here: https://youtu.be/o-pmHQdKzq0
If you’re able to share as much about your husband as a person, it will help the hospital team to understand why he’s responding the way he is and try a different approach. It’ll make their jobs easier if he is able to be more relaxed during care.
My mom has moderate dementia and thinks my dad is an imposter and that her kids are in on it. Therefore, she doesn’t believe anything he says when he’s the imposter person. He is her primary caregiver. The problem is that he is also an alcoholic. He does a great job taking care of her physical needs and safety but refuses to tell fiblets. He just argues with her and tries to convince her that he is really her husband. They get in raging fits arguing and end up calling me and my sister. We then have to go and take my mom out for awhile to calm them both down. Her trigger is his drinking which he does mostly in the evening. She gets so much anxiety about it as she also did before dementia set in. We have tried for years to get him to get help and he won’t. She is on anxiety medicine which helps in the daytime only. Any ideas or resources for those with an alcoholic taking care of someone with Dementia??
Nicole Didyk, MD says
That sounds like such a difficult situation, and I’ve definitely seen situations like it in my practice. In some cases, couples have had to separate to maintain everyone’s safety and wellbeing, and it can actually work out better all around. But the separation solution isn’t always practical or desirable.
If you notice that the evening is a bad time, then maybe suggesting that your mom engage in another activity in a separate part of the house, or make a visit to another relative at those times could work. This is harder during COVID restrictions of course!
Sometimes a social worker can be helpful to tell you about local resources that might be available. It’s always hard with a couple that has been together a long time, to know whether the patterns that you are observing are longstanding or just related to the dementia. A social worker or counselor from the Alzheimer’s Society might be able to give your dad some tips about how to modify his behaviour, and he may accept these tips from a pro instead of family.
A Geriatrician or Geriatric Psychiatrist can probably give you advice about medication adjustments that could help with the anxiety management. In my experience though the adjustments that can e made to the environment and the caregiver behaviour are usually more successful and have fewer side effects.
Thanks for sharing your experience and good luck.
Patricia Poole says
Great articles and tips. I have used all of these tips in my research and in teaching care partners and nurses aides in using these techniques to deliver mouth care for 15 yrs now. My father and step mother both have from mild to advance dementia. I use these techniques on both of them. The only difficulty is my step-mother has a mild version and I have a hard time getting her to understand to use these techniques rather than argue with dad who has advanced vascular dementia/ severe hypothalamus stroke which left him with communication dysfunction and is 6 yrs older. Because she doesn’t acknowledge her own recently diagnosed dementia along with anorexia it is very hard on my dad and my brother and I to get her to communicate with dad like we do. Do you have any advice for working with this type of situation. We have for now finally convinced her at least 12hrs a day both of them need a care giver but she does not want to let go and let the caregiver be responsible for dad’s care and help her with her meals and his.
Nicole Didyk, MD says
Sounds like a difficult situation, which is understandable if both partners are living with dementia. It can be hard for a spouse with normal cognition to understand how to approach someone with advanced dementia so there may be limits to what a person with dementia can learn to do consistently.
Often, it takes a long, slow process of trying to find common ground and working towards small goals.
You might be interested in Dr. Kernisan’s Helping Older Parents membership.
The membership provides ongoing guidance from her and her team of professional geriatric care managers, to help you more easily get through your journey helping your aging parents. It also includes access to her popular Helping Older Parents Course and live QA calls with her. It might be very helpful in supporting your dad and stepmother.