(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.
WHY This?
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.
TRY This!
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)
Good advice, even if I can’t always follow it! I still don’t know the answer to: ‘You’re not my wife, where’s my wife, what have you done with her?’ or ‘!!Take me home now, I hate this place!’ when we are at home. Distraction only works to a point, trips in the car can help, but not if he doesn’t accept me as his wife, when it can get a bit hairy. Oh well, one can but try!
Great article! I took care of my mother for 4 years, 24/7. I wanted to provide her with the best quality of life, maintain her dignity and all with as little medication as possible. Her doctor told me that he didn’t really have any answers but wished me good luck. I began to study. My mother – in a moment of clarity – said she would be happy to let me try my non medical behavior management techniques on her. Four years after her death, I am working full time teaching clinicians, caregivers and family members how to manage behaviors without excessive medications, facilitating a caregiver support group and serving as a hospice chaplain where much of what I do is teaching about dementia behaviors. It still is probably one if the toughest jobs to care for a person with dementia, but I can assure you it does work – I see it happen on a daily basis. And I am so thankful that through support from people like Dr. Kernisan who encouraged me in the beginning, an incredible hospice nurse and a doctor who wished me luck, that I realized what a difference managing behaviors can have in the lives of both patients and caregivers. Glad to see that slowly others are understanding and practicing it as well.
Thank you so much for sharing your story, and for the work you are now doing! You were one of the earliest readers of the site. I’m so glad to know you are now sharing your hard-earned wisdom with others.
It can be hard for families to manage the challenging behavior of seniors who are at risk of diagnosed with Alzheimer’s. The first basic thing to do is to evaluate the underlying behavior of seniors with Alzheimer’s because they can become upset or agitated very quickly. It is better to take things slowly with seniors who are diagnosed with Alzheimer’s because they are unable to cope with simple tasks.
Dealing with a dementia patient can be difficult for family members who have no prior training on how to manage the challenging situation. It is important to look after the daily needs of seniors who have dementia or other related problems. Thanks for sharing the list, it can be useful to many dementia caregivers.
This is such a useful and sensitively handled article. Thanks so much!
Glad you found it helpful!
These are really helpful tips for some family caregivers who find it difficult and exhausting to take care of the basic needs of a senior loved one. It is better to first evaluate the types of underlying triggers seniors have and try to keep them at bay. Hiring an expert care provider can also help seniors and their families in several ways.
I am my mothers primary care giver. She lives alone and is in good physical condition but for the past few months she is very paranoid. She thinks “people” are coming in her house at night so now she won’t go to bed at night. She “hides” jewelry but then forgets and thinks someone “stole” it – a lot of times she thinks its me coming in her house and night and stealing things. I’m at my wits end because its happening several times a day now!
Sorry to hear that you’re having to deal with this situation. What you describe is not uncommon and it can indeed be very frustrating.
I would make sure to have her medically evaluated, if you haven’t already done so. I have some more information in these articles:
6 Causes of Paranoia in Aging & What to Do
4 Things to Try When Your Aging Parent Seems Irrational
Be sure to arguing or attempting to persuade her of what you believe to be true. I would also recommend finding a support group, there is a very active one online at Agingcare.com.
Good luck!
What’s a good “why this try this approach “to ” what are you doing here?! I think you should leave now. Leave now. Get out of here!” As he raises voice and doubles 2 back scratchers together in a menacing way . Almost like a weapon he might strike me with”. Luckily my adult daughter was visiting took him for a walk and to lunch. After several hours, returned home and all was well. BUT what if no one else was home??
Good question. That does indeed sound like a tough situation. I guess the “why this” part would be thinking through whether you can identify any triggers or patterns that bring this on. And then “try this” would mean…trying various ways to defuse or redirect the situation. A caregiver support group can help you come up with things to try.
I will say that of course it’s very scary and stressful to feel threatened in this way. If he tries to hit you or gets more aggressive, I would definitely recommend asking his doctors for help. We don’t want to use medication but the safety of the family and caregivers is extremely important. Good luck!
Thank you for giving such helpful suggestions, it is a good article to read at this particular moment as our mother has moved from mild to moderate Alzheimer’s, and with it has become delusional. Like many others, she is convinced she isn’t at home and repeatedly asks to be taken to her ‘house in London’ which stopped existing decades ago. Your advice to try and listen to the underlying anxiety and distress and react to that is very helpful.
Our problem is that our 90-year-old mother lives by herself, with some support from carers but not 24 hour – we are in the UK where the local authority can’t afford to provide that and we can only afford two hours care a day during the weekdays. We are having a carer go in several times a day, but she has real ‘sundowner’ issues, ie she’s fine mainly during the daytime until it gets dark, when she calls everyone all the time asking or demanding to ‘go home’. And then this continues until late at night and starts again early in the morning, sometimes at 5.00 am or earlier. So while someone is with her it’s controllable, but when there isn’t it’s really hard. What can we do without medication do you think? We don’t want to over medicate but we do want to calm her down from very distressing feelings for her and us. She will eventually go into a care home, but we want her to stay at home for as long as she can.
So, your situation is not uncommon but it is very hard to manage effectively, for an older person who is living alone. I don’t know that there is any effective substitute for a person being there to reassure and redirect an older person who is sundowning. Very occasionally we discover that the older person is taking a medication during the day that makes their thinking worse, and reducing/stopping this can improve the situation. But in most cases, the sundowning is largely about the person being more tired late in the day.
The problem with trying medication for this situation is that it could leave her drowsy, sedated, or confused, and might also affect her balance. These risks are sometimes acceptable when an older person is with someone else, who can still provide some supervision or assistance, and it can make the evenings more bearable for a stressed-out family caregiver.
In short, I cannot think of any particular approaches to try other than medication. And, I recommend being very careful about trying medication for this type of situation; it won’t necessarily fix the sundowning and it’s pretty risky to try for an older person with dementia who is alone.
I have to say that some of my patients have had to move when this situation came up. We tried things like making it easy for the person to phone a family member, etc, and sometimes those work but often it’s not enough. Good luck!
Excellent read! Thanks for reassuring ME that I am not alone. I am currently on a plane to help with my father who has vascular dementia. His behavior of late has been quite challenging,, although I realize a lot of the “why” is due to the trauma of breaking a hip and undergoing partial hip replacement surgery. The skilled nursing facility, (using that term very loosely) seems to use medication as a default. I am in the process of getting an evaluation from his primary care physician.
Thank you, I’m so glad you found the article helpful.
Yes, many facilities do seem to resort to medication quite quickly, so it’s great when family can advocate for trying different approaches first. Good luck!
Many things in this article are very informative. My husband was diagnosed with Alzheimer’s 6 yrs ago I kept him at home until a year ago. He developed bronchitis and had to go to hospital. He had used a walker for the last couple of years and while he was hospitalized he couldn’t walk any more. He had fallen many times before being hospitalized. I had to put him in a Memory Care facility as I couldn’t get a wheelchair through my doors and he then had incontenece. Since being in Memory Care he has become very combative when they try to get him out of bed and sometimes during the day. I really don’t want to put him on medications but don’t want them to make me move him. What would you suggest?
Sorry to hear of your husband’s situation. It can be difficult to manage dementia behaviors in a facility, because sometimes the staff have not been given the training and support that behavioral management requires. For these situations, I still recommend trying to investigate to see what might be triggering him. Be sure to look into the possibility of pain and constipation. Otherwise, if you have advocated for trying non-drug management and they have tried a variety of approaches and he is still being very combative, then sometimes it’s reasonable to conclude that it’s time to try medication and sedation. I have more on medication for behaviors here:
5 Types of Medication Used to Treat Difficult Dementia Behaviors
Good luck!
Thank you for publishing information that can help us with managing our loved one’s irrational behavior. Our daughter (34) is disabled, uses a walker and wheelchair, limited vocabulary, and I’m convinced is now suffering from dementia. We have rotated through several medication trials. Some of those helpful, while others were dangerously sedating. She wasn’t sleeping at night and began hitting us with items, as we were sleeping. She too hallucinates and talks to others a loud and very loudly at times, shouting, knocks on the walls frequently during the night, asking for help, or ordering us to turn it “off”. She also complains of the noise being too loud. Only the house is quiet and the noise is in her mind. We are working with a medication specialist. We’ve tried a weighted blanket at night but we are back to square one. We are weaning off Haldol since it is causing sleepy ness during the day, and her mobility is compromised. Xanax helps and Viibryd seems to have helped with the crying jags. It’s the violence we are still trying to reduce. She is small but when she is revived up, she is mighty. I am going to get your book and seek out more support in this direction. She was diagnosed with PTSD, and we see a neurologist yearly, along with a new medical doctor that serves younger disabled patients. Sleep and safety for her and also for my husband and I are most important. We were trying to get back on tract for the last 4 years, only I think we need to readjust our thinking to a model that has changed. She will never be like she was, she requires constant supervision. But I think we can adapt new strategies for helping her feel validated and safe again. Taking her out in public has become less and less because of her unpredictable behavior. She has yelled at diners while out to dinner to be quiet and shh-es them. Therefore really loud sports restaurants are not good choices for her and we cannot go to some of the quieter restaurants either because you can hear her every word. So our lives have become smaller. She used to enjoy going to basketball and football games but those events are way over stimulating for her. Loud sudden anything sets her off. Anxiety is always driving her behavior. The one activity she truly still looks forward to is her exercise (PT) at our local university, where students needing volunteer hours, practice PT with our daughter. She still loves them and the routine. The students change every two months but we’ve been lucky she has been able to accept the new students. We did try an adult day program for severely disabled adults for 2 days a week only her peers were less communicative. The staff was attentive and happy to have our daughter attend, since she is verbal, only she has hit another attendee now twice different days but same person. I understand that hitting is a release for her but are there other reasons she is reacting. I am truly convinced her brain is not processing properly. She had a CT scan recently at the hospital that did show some changes. Hopefully our neurologist can give us more information. Thank you for listening.
Sorry to hear of your daughter’s condition. Given her age of 34 and her history of disability, she’s quite different from the geriatric patients that I have experience with. But yes, I imagine that hitting is a release and a manifestation of some type of distress. It also might be related to her brain changing and her becoming more disinhibited. Hopefully, your neurologist will be able to help you. You may want to look for someone who has experience with cognitive changes in people of her age and with her type of disability. I also know that many families find it helpful to join online support groups for people like them, so you could look for that if you haven’t already done so. Good luck!
My wife has had dementia for about 10 years now and it’s gotten progressively worse lately. She was a nonstop talker before she came down with this horrible disease. She babbles alot now with no real words coming out. She has moments of extreme rage and I have not always reacted the way I should. Sometimes I need to walk away from her just to gather some composure. She seems to always want to sit in the same spot on the couch and we do end up watching a lot of TV, although she isn’t really watching 80% of the time. It’s getting more difficult getting her in and out of the car, especially when it’s dark out. Showers have become very difficult. Water scares her and makes her angry. I just got a slide chair for the bathtub and am going to see how that works. She used to be a flight attendant and a exceptional multi tasker. Sad to see her the way she is now. Thanks for some good advice on some things that I have failed in with her care.
I’m so sorry to hear of your situation with your wife. It sounds extremely difficult and it must be so sad to see her declining this way.
Let me assure you: just because you may not have always responded “optimally” to her, this doesn’t mean you have failed! You have been there for her in so many ways, under circumstances that most of us hope to never be tested by.
Really the problem is that we the healthcare system fail caregivers like you, because we aren’t yet good at consistently providing the support and coaching that people need.
She is very lucky to have you taking care of her. Don’t forget it, take care of yourself when you can, and be sure to join some kind of group so that other people can keep reminding you of everything you are doing.
Thanks for replying to my situation with my wife. I just wondered if it would be wise to consult a Elder Law Attorney in regards to me someday having to put my wife in a home if and when I am unable to care for her one day? I will give her the best care I can for as long as I can, but that day may come when I won’t be able to take care of her anymore. I have heard from numerous people that financially one can be wiped out if the person being taken care of has to go to a Alzheimers Facility or Nursing Home. Thanks for the encouragement you have given me.
I’m happy to help in whatever small ways I can online. And YES, I would absolutely encourage you to do some advance planning regarding your wife’s care.
First of all, every family caregiver who is providing a lot of hands-on care should have some kind of back-up plan, in case you fall ill suddenly or otherwise aren’t able to provide your usual care.
And then yes, it’s very wise to anticipate that at some point, you might need to provide care in other ways, such as through a facility or paying for someone to come into the home, and in this case, how could this be financed?
An experienced Elder Law Attorney (or an estate attorney experienced in these situations) should be able to help you review your options. They could also help you address your own advance planning (who will is authorized to make medical decisions and/or manage your affairs if you aren’t able to?) You could also start by contacting your Area Agency on Aging (serch the directory at eldercare.gov) to see if there are any less expensive ways to start learning about your options for obtaining more care for your wife.
Last but not least, I would recommend joining an online support group for suggestions related to this. The caregiver forum at AgingCare.com has many spousal caregivers. Good luck and take care!
My sweet husband has slowly progressed into alzheimers …he constantly thinks his parents,who have been dead for years, are still alive…he keeps wanting to go and see them…should I tell them they are dead or just go along with what he thinks…he tells me I am lying when I tell him they have “gone to heaven”…he wandered out of the house yesterday and went to the next door neighbors home..When we tried to get him to come back home he became extremely combative hitting and biting our son…..he just sat outside by the pool and there was nothing we could do to get him to come home…we finally had to call non-emergency 911 for help (the neighbor is lovely, but is new and we do not know him) The police officer was wonderful and got him to return home…by then he had completely snapped out of the paranoid behavior and was his almost normal self..you excellent advice would be so welcome on how to handle the parents issue…thank you so very much for all of your wonderful help
Sorry to hear of this situation with your husband, it does sound difficult. In general, I would say that it can take some experimenting to find the better things to say to someone, when it comes to them focusing on dead relatives or really anything else. If he is upset by your saying his parents have gone to heaven, you will need to try something else (perhaps that they are out of town)?
I would especially recommend joining an online group of dementia caregivers. These are a great way to get some emotional support and also just to get lots of ideas, as you try to figure out how to manage a particular behavior program. The one at AgingCare.com is quite active and would be able to help you with this situation. Good luck!
I am power of attorney for a dear friend; she’s 95 years old, and has made a somewhat progressive decline for about 5 years due to Alzheimer’s. She remains at home with 24 hour care, but her mobility is limited to transferring to and from a wheelchair to take her to the toilet. On her last doctor’s trip (3 months ago), she had a panic attack in the car. Since then, we have not attempted any sort of outdoor activity.
In the last 3 weeks, she cannot relax. She constantly mumbles, asks “what am I doing?” “Who is helping me?” It seems as if she cannot relax, even for 5 minutes. Sundowners is a big problem. She takes a pretty strong sedative (she did this for years before Alzheimer’s), but most of the night, she is mumbling, coughing, and generally unable to relax.
We have just begun with Hospice care, so I guess I will work with the health care professionals there; her helpers are exhausted, Mary is miserable. Is there anything that can/should be done?
Kudos to you for overseeing your friend’s care. A good hospice team should have ideas on how to investigate her distress and relieve it. Could she possibly be in pain, or experiencing constipation? Sometimes treating those conditions helps.
We generally try to avoid sedatives in people her age, but it can be reasonable to try them for distress when other options have been tried and have been unsuccessful. Good luck!
I’ve been the primary live-in caregiver for my 89-year-old mother for the past 3 years, doing all the cleaning, cooking, shopping, banking, scheduling, decision-making and thinking. She has Parkinson’s, dementia and a colostomy. After the last two recent bouts with UTI and hospital delirium her dementia has gotten much worse. 80% of the time she lives in a world filled with hallucinations, delusions and illogical thought. She’s currently in rehab, but will soon come home even though I think she should go into a nursing home. I can’t deal with this level of dementia by myself. She burned me out with just her previous level of dementia where she was still living mostly in the real world, but doing stuff like having colostomy “accidents” and yelling for me to get her a Tylenol in the middle of the night. But I can’t legally (without a long expensive process) put her in a nursing home if she doesn’t want to go. If I hire a caregiver, which she doesn’t want in my home, it will burn through her money in a matter of months, and I’m not going to add to my already tremendous stress by burning through my retirement savings to pay for one. 24-hour care would be over $100,000/year. After her money is gone, I’d likely have a court battle to put her in a nursing home because I know she won’t go voluntarily. Every time I go to rehab she berates and criticizes me for putting her there and she’s only been there for 2 1/2 weeks. A few minutes I can take, but I’m not going to sit there for an hour or two and take a constant barrage, so I’ve stopped going except to take her fresh clothes and whatnot. Redirection doesn’t work. Speaking calmly doesn’t work. Sometimes she wants me to leave, other times she wants me to stay, but soon returns to berating me. She cries when I’m there because of the “suffering” she’s going through at rehab. As you’ve pointed out, if I ask her what suffering she can’t explain it. Because there isn’t any except what she creates in her own mind. I picked this rehab because it’s a highly rated place. At one point rehab was calling me several times per day because she wouldn’t take her pills or wouldn’t eat or was just making a general nuisance of herself. They’ve put her on Prozac and that helps. The only thing I’ve found that works a little to satisfy her hallucinations and delusions is lying, but of course she accuses me of lying about everything, so it’s a blessing and a curse. I can’t just ignore the hallucinations and delusions because then she says, “You don’t believe me, do you?”. Or she insists that I do something about the delusional subject matter.
I’m dreading the day she comes home because I know my life will be more of a hell than it was before. I feel trapped. I can either take my mother to court and have nothing to do with her again, abandon her and let adult protective services deal with it or take her home and be sleep-deprived and miserable, dealing with her delusions and cleaning up her “accidents”. There is no other “family” to handle the burden. And respite care isn’t nearly enough of a respite. And on top of this I still work full-time (mostly from home).
Yes, I know it’s the dementia talking, although she was a somewhat difficult person before the dementia, so I think the dementia has just amplified that to the nth degree. And yes, I have talked to an eldercare attorney previously, although I may schedule another meeting to see if anything has changed. But I have yet to see an approach that will work well for my situation.
Thanks for sharing your story and your situation. Ok, you already know this: there are no easy ways forward. But here is what I will tell you now. You have already put in 3+ years of very hard work to help your mother. You have made incredible sacrifices. You have done a lot. You may have done enough.
You sound quite burned out, so it may be time to take care of you. Yes, we want to step up and help aging parents. No, it should not turn into years that ruin your health and/or your finances.
So, I would encourage you to reframe things. If you cannot take her back home without jeopardizing your health or sanity, you may need to let the facility know that unfortunately you are no longer going to be able to provide the care she needs, and can they help you come up with a safe plan for discharge to a suitable facility.
Please don’t think of this as abandoning her. As many family caregivers will tell you, the caregiving doesn’t work when an older person moves to a facility, it just changes. It should be less intense for you though, and it sounds like you desperately need that.
To help you sort this out and coach you through it, you could look for a geriatric care manager to assist you (check at AgingLifeCare.org) for a directory. A good one will know what are the relevant elderlaw issues, and can help you get the most out of your elderlaw consult as well.
Oh and, don’t expect your mom to be happy about this, or to understand. She’s impaired by the dementia, plus it sounds like she was a difficult person before. Please listen to this podcast episode if you can: 087- Interview: Coping with Difficult Older Parents
We do have a Helping Older Parents Membership program that can help support you as well.
good luck and take care!