One of the greatest challenges, when it comes to Alzheimer’s disease and other dementias, is coping with sundowning and with difficult behaviors.
These are symptoms beyond the chronic memory/thinking problems that are the hallmark of dementia. They include problems like:
- Delusions, false accusations, paranoid behaviors, or irrational beliefs
- Agitation (getting “amped up” or “revved up”) and/or aggressive behavior
- Restless pacing or wandering
- Disinhibited behaviors, which means saying or doing socially inappropriate things
- Sleep disturbances
These are technically called “neuropsychiatric” symptoms, but regular people might refer to them as “acting crazy” symptoms. Or even “crazy-making” symptoms, as they do tend to drive family caregivers a bit nuts.
And when these behaviors happen in the late afternoon or early evening, it’s usually called “sundowning“. (In most cases, sundowning is triggered by fatigue; anticholinergic medications may cause sundowning symptoms as well.)
Because these behaviors are difficult and stressful for caregivers — and often for the person with dementia — people often ask if any medications can help.
The short answer is “Maybe.”
A better answer is “Maybe, but there will be side-effects and other significant risks to consider, and we need to first attempt non-drug ways to manage these behaviors.”
In fact, no medication is FDA-approved for the treatment of these types of behaviors in Alzheimer’s disease or other forms of dementia. (For more on the drugs that are FDA-approved to treat the cognitive symptoms of dementia, see here: 4 Medications to Treat Alzheimer’s & Other Dementias: How They Work & FAQs.)
But it is VERY common for medications — especially antipsychotics — to be prescribed “off-label” for this purpose.
This is sometimes described as a “chemical restraint” (as opposed to tying people to a chair, which is a “physical restraint”). In many cases, antipsychotics and other tranquilizing medications can certainly calm the behaviors. But they can have significant side-effects and risks, which are often not explained to families.
Worst of all, they are often prescribed prematurely, or in excessive doses, without caregivers and doctors first putting in some time to figure out what is triggering the behavior, and what non-drug approaches might help.
For this reason, in 2013 the American Geriatrics Society made the following recommendation as part of its Choosing Wisely campaign: “Don’t use antipsychotics as first choice to treat behavioral and psychological symptoms of dementia.”
You may now be wondering what should be the first choice. This depends on the situation, but generally, the first choice to treat difficult behaviors or sundowning is NOT medication. (A possible exception: geriatricians do often consider medication to treat pain or constipation, as these are common triggers for difficult behavior.)
Instead, medications should be used after non-drug management approaches have been tried, or at least in combination with non-drug approaches. (Learn about these here: 7 Steps to Managing Difficult Dementia Behaviors Safely & Without Medications.)
Of course in certain situations, medication should be considered. If your family member has Alzheimer’s or another dementia, I want you to be equipped to work with the doctors on sensible, judicious use of medication to manage difficult behaviors.
In this post, I’ll review the most common types of medications used to treat sundowning and difficult behaviors in dementia. I’ll also explain the approach that I take with these medications.
5 Types of Medication For Sundowning or Difficult Behaviors in Dementia
Most medications used to treat difficult behaviors fall into one of the following categories:
1. Antipsychotics. These are medications originally developed to treat schizophrenia and other illnesses featuring psychosis symptoms. (For more on psychosis, which is common in late-life, see 6 Causes of Paranoia in Aging & What to Do.)
Commonly used drugs: Antipsychotics often used in older adults include:
- Risperidone (brand name Risperdal)
- Quetiapine (brand name Seroquel)
- Olanzapine (brand name Zyprexa)
- Haloperidol (brand name Haldol)
- For a longer list of antipsychotics drugs, see this NIH page.
Newer antipsychotics include:
- Brexpiprazole (brand name Rexulti)
- This antipsychotic was initially FDA approved for the treatment of schizophrenia and as an adjunct for major depression.
- In May 2023, FDA approval was expanded to include the treatment of agitation associated with dementia due to Alzheimer’s disease.
- Pimavanserin (brand name Nuplazid).
- It was FDA-approved in 2016 for psychosis associated with Parkinson’s disease.
Usual effects: Most antipsychotics are sedating, and will calm agitation or aggression through these sedating effects. Antipsychotics may also reduce true psychosis symptoms, such as delusions, hallucinations, or paranoid beliefs, but it’s rare for them to completely correct these in people with dementia.
Risks of use: The risks of antipsychotics are related to how high the dose is, and include:
- Decreased cognitive function, and possible acceleration of cognitive decline
- Increased risk of falls
- Increased risk of stroke and of death; this has been estimated as an increased absolute risk of 1-4%
- A risk of side-effects known as “extrapyramidal symptoms,” which include stiffness and tremor similar to Parkinson’s disease, as well as a variety of other muscle coordination problems
- People with Lewy-body dementia or a history of Parkinsonism may be especially sensitive to antipsychotic side-effects; in such people, quetiapine (brand name Seroquel) is considered the safest choice
Evidence of clinical efficacy: Clinical trials often find a small improvement in symptoms. However, this is offset by frequent side-effects. Studies have also repeatedly found that using antipsychotics in older people with dementia is associated with a higher risk of stroke and of death.
2. Benzodiazepines. This is a “sedative/tranquilizer” category of medication that relaxes people fairly quickly. So these drugs are used for anxiety, for panic attacks, for sedation, and to treat insomnia. They can easily become habit-forming.
Commonly used drugs: In older adults, these include:
- Lorazepam (brand name Ativan)
- Temazepam (brand name Restoril)
- Diazepam (brand name Valium)
- Alprazolam (brand name Xanax)
- Clonazepam (brand name Klonopin)
Usual effects: In the brain, benzodiazepines act similarly to alcohol, and they usually cause relaxation and sedation. Benzodiazepines vary in how long they last in the body: alprazolam is considered short-acting whereas diazepam is very long-acting.
Risks of use: A major risk of these medications is that in people of all ages, they can easily cause both physical and psychological dependence. Additional risks that get worse in older adults include:
- Increased risk of falls
- Paradoxical agitation (some older adults become disinhibited or otherwise become more restless when given these drugs)
- Increased confusion
- Causing or worsening delirium
- Possible acceleration of cognitive decline
In older adults who take benzodiazepines regularly, there is also a risk of worsening dementia symptoms when the drug is reduced or tapered entirely off. This is because people can experience increased anxiety plus discomfort due to physical withdrawal, and this often worsens their thinking and behavior.
Stopping benzodiazepines suddenly can provoke life-threatening withdrawal symptoms, so medical supervision is mandatory when reducing this type of medication. (See How You Can Help Someone Stop Ativan for more information.)
Evidence of clinical efficacy: A recent review of clinical research concluded there is “limited evidence for clinical efficacy.” Although these drugs do have a noticeable effect when they are used, it’s not clear that they overall improve agitation and difficult behaviors in most people. It is also not clear that they work better than antipsychotics, for longer-term management of behavior problems.
3. Mood-stabilizers. These include medications otherwise used for seizures. They generally reduce the “excitability” of brain cells and other neurons.
Commonly used drugs: Valproic acid (brand name Depakote) is the most commonly used medication of this type, in older adults with dementia. It is available in short- and long-acting formulations.
Usual effects: The effect varies depending on the dose and the individual. It can be sedating.
Risks of use: Valproic acid requires periodic monitoring of blood levels. Even when the blood level is considered within an acceptable range, side-effects in older adults are common and include:
- Confusion or worsened thinking
- Dizziness
- Difficulty walking or balancing
- Tremor and development of other Parkinsonism symptoms
- Gastrointestinal symptoms including nausea, vomiting, and/or diarrhea
Evidence of clinical efficacy: A review of randomized trials of valproate for agitation in dementia found no evidence of clinical efficacy, and described the rate of adverse effects as “unacceptable.” Despite this, some geriatric psychiatrists and other experts feel that valproate works well to improve behavior in certain people with dementia.
4. Anti-depressants. Many of these have anti-anxiety benefits. However, they take weeks or even months to reach their full effect on depression or anxiety symptoms.
Commonly used drugs: Antidepressants often used in older people with dementia include:
- Selective serotonin reuptake inhibitor (SSRI) antidepressants:
- Citalopram, escitalopram, and sertraline (brand names Celexa, Lexapro, and Zoloft, respectively) are often used
- Paroxetine (brand name Paxil) is another often-used SSRI, but as it is much more anticholinergic than the other SSRIs, geriatricians would avoid this medication in a person with dementia
- Mirtazapine (brand name Remeron) is an antidepressant that can increase appetite and sometimes increases sleepiness when given at bedtime
- Trazodone (brand name Desyrel) is a weak antidepressant that is sedating and is often used at bedtime to help improve sleep
Usual effects: The effects of these medications on sundowning and on agitation is variable. SSRIs may help some individuals, but it usually takes weeks or longer to see an effect. For some people, a sedating antidepressant at bedtime can improve sleep and this may reduce daytime irritability.
Risks of use: The anti-depressants listed above are generally “well-tolerated” by older adults, especially when started at low doses and with slow increases as needed. Risks and side-effects include:
- Nausea and gastrointestinal distress, especially when first starting or increasing doses (SSRIs)
- SSRIs may be activating in some people, which can worsen agitation or insomnia
- Citalopram (in doses higher than 20mg/day) can increase the risk of sudden cardiac arrest due to arrhythmia
- An increased risk of falls, especially with the more sedating antidepressants
Evidence of clinical efficacy: A 2014 randomized trial found that citalopram provided a modest improvement in neuropsychiatric symptoms; however the dose used was 30mg/day, which has since been discouraged by the FDA. Otherwise, clinical studies suggest that antidepressants are not very effective for reducing agitation. (In fact, randomized trials find that antidepressants do not seem to improve depressive symptoms in people with Alzheimer’s disease.)
5. Dementia drugs. These are the drugs FDA-approved to treat the memory and thinking problems associated with Alzheimer’s disease. In some patients, they seem to help with certain neuropsychiatric symptoms, and they might help with sundowning. For more on the names of these drugs and how they work, see 4 Medications to Treat Alzheimer’s & Other Dementias.
Note: I am not including medications to manage dementia-related sleep disturbances in this post. You can learn more about those here: How to Manage Sleep Problems in Dementia.
If you’re wondering which medication is best for sundowning and difficult behaviors in dementia
You may be now wondering just how doctors are supposed to manage medications for difficult dementia behaviors.
Here are the key points that I usually share with families:
- Before resorting to medication: it’s essential to try to identify what is triggering/worsening the behavior, and it’s important to try non-drug approaches, including exercise.
- Be sure to consider treating possible pain or constipation, as these are easily overlooked in people with dementia. Geriatricians often try scheduling acetaminophen 2-3 times daily, since people with dementia may not be able to articulate their pain. We also titrate laxatives to aim for a soft bowel movement every 1-2 days.
- No type of medication has been clinically proven to improve sundowning for most people with dementia. If you try medication for this purpose, you should be prepared to do some trial-and-error, and it’s essential to carefully monitor how well the medication is working and what side-effects may be happening.
- Antipsychotics and benzodiazepines work fairly quickly, but most of the time they are working through sedation and chemical restraint. They tend to cloud thinking further. It is important to use the lowest possible dose of these medications.
- Benzodiazepines probably increase fall risk more than antipsychotics do, and are habit-forming. They are also less likely to help with hallucinations, delusions, and paranoias. For these reasons, if a faster-acting medication is needed, geriatricians usually prefer antipsychotics to benzodiazepines.
- Antidepressants take a while to work but are generally well-tolerated. They may not improve depressive symptoms, but they seem to make some people with dementia less irritable or anxious. Geriatricians often try escitalopram or citalopram in people with dementia.
- It is usually worth trying a dementia drug (such as a cholinesterase inhibitor or memantine) if the person is not already on these medications, as these drugs also tend to be well tolerated.
I admit that although studies find that non-drug methods are effective in improving dementia behaviors and to manage sundowning, it’s often challenging to implement them.
For people with dementia living at home, family caregivers or paid helpers often have limited time and energy to learn and practice behavior management techniques. Despite the risks of antipsychotics, family members are often anxious to get some relief as soon as possible.
As for residential facilities for people with Alzheimer’s and other dementias, they vary in how well their staff are trained in non-drug approaches.
What you can do about medications and difficult dementia behaviors
If your relative with dementia is not yet taking medications for sundowning and other difficult behaviors, consider these tips:
- Start keeping a journal and learn to identify triggers of difficult behaviors. You will need to observe the person carefully. Your journaling will come in handy later if you start medications, as this will help you monitor for benefits and side-effects.
- If the difficult behaviors really emerge or escalate in the late afternoon or evening, as is typical for sundowning, see if you can avoid fatigue or overstimulation by creating a routine that allows the person to rest quietly by mid-afternoon. You can find more tips to manage sundowning here.
- Learn to redirect and de-escalate difficult dementia behaviors. Contact your local Alzheimer’s Association chapter or local Area Agency on Aging to find support near you. You can also learn a good approach in this article: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications)
- Ask your doctor to help assess for pain and/or constipation. Consider a trial of scheduled acetaminophen, and see if this helps. (For more on acetaminophen, see How to Choose the Safest Over-the-Counter Painkiller for Older Adults.)
- Consider the possibility of depression. It’s reasonable to consider a trial of escitalopram or a related antidepressant. That said, clinical research suggests antidepressants don’t work well in people with dementia. Research does suggest that in dementia, depression treatments involving certain types of therapy plus positive lifestyle changes is probably more effective than medication.
- If the person is often very agitated, aggressive, or paranoid, or if otherwise the behavioral symptoms are causing significant distress to the older person or to caregivers, it’s often reasonable to try an antipsychotic.
- Be sure to discuss the increased risk of stroke and death with the doctor and among family members. This can be a reasonable risk to accept, but it’s essential to be informed before proceeding.
- It’s best to start with the lowest dose possible.
- If there have been visual hallucinations or other signs of possible Lewy-Body dementia, quetiapine (brand name Seroquel) is usually the safest first choice to manage sundowning or other difficult behaviors.
- For all medications for dementia behaviors:
- Monitor carefully for evidence of improvement and for signs of side-effects.
- Doses should be increased a little bit at a time.
- Especially for antipsychotics, the goal is to find the minimum necessary dose to keep behavior manageable.
If your relative with dementia is currently taking medications for behaviors or for sundowning, then you will have to consider at least the following two issues.
One is whether the behavior issues currently seem manageable or not. If the behaviors are still often very difficult, then it’s important to look into triggers and other behavioral management approaches.
Ongoing agitation or difficult behaviors may also be a sign that the medication isn’t effective for your relative. So it may also be reasonable to consider a change in medication. The best is to work closely with a doctor AND a dementia behavior expert; some social workers and geriatric care managers are very good with dementia behaviors.
The other issue is to make sure you are aware of any risks or side-effects that the current medications may be causing.
The main side-effects I see people with dementia experience are excess drowsiness, excess confusion, and falls. These are usually due to high doses of antipsychotics and/or benzodiazepines. In such cases, it’s often possible to at least reduce the dosages somewhat. Addressing any other anticholinergic or brain-dampening medications can also help.
Now should you aim to get your relative completely off antipsychotics, in order to reduce mortality risk, improve alertness and thinking, and to reduce fall risk?
I have found that sometimes tapering people completely off antipsychotics is possible, but it can be a labor-intensive process. Furthermore, studies find that a certain number of people with dementia “relapse” after antipsychotics have been discontinued. Another very interesting 2016 study of antipsychotic review in nursing homes found that stopping antipsychotics tended to make behavior worse unless the nursing home also implemented “social interventions.”
In other words, attempting to completely stop antipsychotic medications involves effort, may be followed by worse behavior, and is less likely to succeed if you cannot concurrently provide an increase in beneficial social contact or exercise. It is certainly worth considering, but in people who are taking more than the starter dose of antipsychotic, it can be challenging.
No easy solutions but improvement IS usually possible
As many of you know, behavior problems are difficult in dementia in large part because there is usually no easy way to fix them.
Many — probably too many — older adults with Alzheimer’s and other dementias are being medicated for their sundowning or other behavior problems.
If your family is struggling with behavior problems, I know that reading this article will not quickly solve them.
But I hope this information will enable you to make more informed decisions. This way you’ll help ensure that any medications are used thoughtfully, in the lowest doses necessary, and in combination with non-drug dementia behavior management approaches.
To learn about non-drug management approaches, I recommend this article: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications).
And if you are looking for a memory care facility, try to find out how many of their residents are being medicated for behavior or for sundowning. For people with Alzheimer’s and other dementias, it’s best to be cared for by people who don’t turn first to chemical restraints such as antipsychotics and benzodiazepines.
This article was first published in 2016, and was last updated by Dr. K in May 2023.
Pat O. says
Thank you for this very informative article. My 78 year-old male relative has been diagnosed with dementia. He was told following a brain scan that he seems to have suffered a series of mini strokes. This has affected his mood (generally flat affect) or he becomes anxious, frightened, uncooperative, depressed. He has also become neglectful in his personal hygiene, and is socially isolated.
At the same time, he is most often than not quite coherent, and engages in complex dialogue, where he addresses historical and current socio-political events with accuracy and clarity.
His psychiatrist has recently decided to address his depression with Effexor. I am wondering whether this is an appropriate and/or effective drug for someone with this diagnosis, and what the the expected side effects might be? Thank you.
Leslie Kernisan, MD MPH says
Well, sounds like they think he has some vascular dementia and the symptoms you describe would fit into that as well. This condition is associated with depression but unfortunately, studies so far suggest that it’s usually hard to treat. (Depression in other forms of dementia also tends to not respond well to antidepressants; basically antidepressants seem to be more effective in people who are NOT cognitively impaired.)
If you want to learn more about vascular depression, here is a recent scholarly overview:
Vascular depression consensus report – a critical update
Usually first-line therapy for depression in older adults is an SSRI-type medication such as sertraline or citalopram (brand names Zoloft and Celexa, respectively). These tend to have fewer side-effects. A drug such as venlafaxine (brand name Effexor) is often considered “second-line”; it can have more side-effects and it can be more challenging to discontinue. That said, your relative’s doctor may have his reasons for proposing Effexor.
I would recommend asking the doctor to clarify why he’s proposing Effexor in particular. I would also recommend clarifying what the plan is for determining whether the medication is working, and stopping/switching the medication if it’s not. Good luck!
Joy says
My Mother has Alzheimer’s and has gotten more agitated in the last five months. The doctor, facility and hospital all want to give her the antipsychotic drugs. I find that they seem to make her more agitated, kicking, hitting, etc. She does not sleep well at night either. When giving the antipsychotics she can sleep till 3 pm the next day and is very drugged. The last drug was Seroquel and when she was off it she was more calm and easier to redirect. She has now fallen and fractured C2 in her neck and a few weeks later broke her arm. The cervical collar is a real trigger to agitation. Her agitation can be first thing in the morning and sometimes at bedtime or during the night. She lost her spouse of 70 yrs, 4 months ago, then we moved her to a facility, then another facility closer to family, so she has had a lot of change. We now took her from the facility and plan to move to an Adult Family home but I am concerned with her not having any meds for agitation or to help sleep she might not be successful in the home. Are there any meds you can recommend for someone other than antipsychotics for behavior management? Our doctor wants Seroquel to help sleep and for agitation. Thank you.
Leslie Kernisan, MD MPH says
Sorry to hear about your mother’s situation.
I have described the medication possibilities in the article. Assuming they have checked for pain, constipation, etc, then at bedtime, one could try melatonin or trazodone. If an antipsychotic seems absolutely necessary, then we would usually use the smallest dose available; for Seroquel that would be 12.5mg. If she hasn’t done well w Seroquel and doesn’t have any signs of Parkinsonism/Lewy-Body, they could see if she responds better to a different antipsychotic.
As noted in the article, some Alzheimer’s patients seem to do a little better on citalopram, but that does take 4-6 weeks to take effect. Good luck!
Lissa Furbee says
Your site is absolutely fabulous! I recommend it to my Home Health Aides and family members of all my patients THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!
Leslie Kernisan, MD MPH says
Glad you find the site helpful. Thank YOU for your feedback and for spreading the word!
LaVaughn says
Dr.Leslie Kernisan
I am in admiration of your knowledge and willingness to have all of this information out here, I have much respect for what I have read that you have posted and honestly have no further questions because it seems like we all are experiencing the same things in different ways with our aging parents and it’s definitely a challenge and not easy.
My mother turned 80 in October and in January we started to watch a slow decline which has rapidly sped up now that it is June. She is in a nursing facility which is not where we wanted her to be but we do not have the type of finances to put her in something that we would feel could perhaps be more accommodating for her needs as the dementia has progressed.
I read thoroughly everything you posted as well as a lot of comments and read other people’s stories and each story had a bit and piece of what we are experiencing as a family and it is more so myself her daughter who has taken this on. I am in some forms of understanding more about it then perhaps I thought I knew but we wished early on in her life she would have allowed us entry because I feel that she had bipolar disorder early on in life but barred us from that part of her life and would not share and would not allow us to reach out and help her.
Now it 80 it has turned to dementia and I am watching all of the horrible symptoms and we have tried almost every medication that you have listed out there, some of which she became addicted to along the journey so this is where we are and I’m just trying to be understanding and ride out the storm and hope there will be some calm along the way
Leslie Kernisan, MD MPH says
Thank you for your kind comments regarding the site, and for sharing your story. It sounds like you and your family have been through a rough time. I have no answers or suggestions, other than to say that it is common for families to try so so hard to help an older parent, and yet we still often end up with outcomes that don’t feel good.
This doesn’t mean that your efforts were for nothing, or that they weren’t good enough. Especially if you think your mother had mental health issues earlier in life, there probably wasn’t going to be a way for you to get her the help and the outcomes you would’ve liked for her to have.
You can’t save her or make things better for her, you can only try, as you have done. You are thinking of her, even though she may not be able to show appreciation for this. Take care of yourself and remember that you’ve done a lot, and it’s enough, even though it’s not the outcome we would’ve chosen for her. Hope things get better somehow, and best wishes for what’s left of your journey.
Susan says
Hi,
My 69 yr. old mother was diagnosed with dementia almost 2 years ago. She is taking Donepezil and Memantine for the dementia. Unfortunately, she has progressed to getting very agitated and aggressive. Some days he will continuously walk around the house, constantly slamming doors, throwing items or trying to find items to throw, etc. Thankfully, it isn’t every day. We have tried the non-medicine way of redirecting her aggression but nothing works. I reached out to her neurologist to ask her to prescribe either Ativan or Xanex. I asked for those items because I didn’t want to go the antipsychotic route yet. I thought that the benzodiazepines route would be less aggressive and if that didn’t work, we could then try the antipsychotic. I explained this all to the nurse and she said the doctor would be calling me back.
Well, the doctor left me a voicemail and stated she prescribed my mother Seroquel 25 mg. I called back and finally got the doctor. I explained my concerns to the doctor. She stated (kind of rudely) that she will not proscribe benzodiazepines to a dementia patient and I could go ahead and get a second opinion. The problem is, I’ve called around, and of course they need to see my mother in person. That is a challenge because we just found out recently, she does not want to get in the car. She goes off (another reason wanting the medication). Also, her insurance provider is where they house all of their doctors under the same roof and I am afraid tthey will side with her doctor since they are “co-workers.”
I have done a lot or research that I believe from good resources and I really didn’t see anything about benzodiazepines being too negative for dementia patients (until reading your comments) but have read stuff about the antipsychotics. I also wanted to go the benzodiazepines route first since her aggression is sporadic and wanted to use it “as needed”. Seroquel has to be taken daily, correct? Can it be taken “as needed”? I have a call out to the Head of Neurology to discuss my concerns (not that it will help) but any insight you can provide would be greatly appreciated. Thank you so much.
Leslie Kernisan, MD MPH says
Sorry that you are having such a difficult time with your mother’s symptoms.
Benzodiazepines in dementia are indeed discouraged by geriatricians and most experts. They can cause paradoxical agitation and are more habit-forming, which means there’s a greater risk of provoking withdrawal if they are stopped or reduced.
Antipsychotics have been associated with an increased risk of death in older adults but they are still considered a better choice in many cases, assuming families have been warned of the risks.
Antipsychotics can indeed be used on an as-needed basis. Any oral medication will take some time to kick in (compared to IV). I think what your mother’s doctors are suggesting is reasonable. If she doesn’t tolerate the antipsychotic, then they might be willing to try something else.
I know you have tried non-drug methods, but keep trying, even as you use a medication as needed. Is she getting enough exercise and sunshine? would music therapy help? What activities does she enjoy? these are some of the things to keep thinking about. Good luck!
Susan says
Thank you Dr. Kernisan. Your insight is greatly appreciated.
Kristine N says
Susan,
We found a low dose of TCH: CBD (1:1 ratio) was so helpful for my mother’s general agitation. She went from pacing back and forth and shouting all of the time to go out to being calm and happy most of the time. She is happy all of the time now, except toileting and showering, during which time she is still very combative. If you can get legal marijuana in your state, I would highly recommend this route. It was a life changer for my mom (75 years old, probable Alzheimers).
Vanessa Timm says
Hello. My mother, age 84, has been yelling on and off this past year and has always raised her voice most loudly during all of her Frontaltemporal dementia which accelerated after a head trauma 2 1/2 years ago. Now she can’t speak words and yells continuously these past few months. The hospice nurse has evaluated her for pain related possibly to NPH from her history. They have checked her bowels, did an abdominal X-ray, UA, changed lounging chairs, different cushions etc but nothing conclusive for the cause, keeps yelling. Sometimes seems to communicate, other times to just yell. Ativan no longer works so have placed her on Haldol 2mg Q12h and MS (Roxinol) 10mg as needed. Mom is very calm now but mostly sedated. I can no longer speak with her since she falls asleep then awakens for moments at a time and she appears more contractured and yells out in pain when moved. The hospice nurse isn’t open to other forms of medication except antipsychotic heavy hitters but it does keep Mom quiet. I don’t know what is normal practice in this situation but I guess Mom will die in sedated bliss, her eating has decreased as well. I’m tired as a MPOA to always second guess medical intervention ( facilities like to sedate) and don’t know what if anything to do. The hospice nurse says if they lift the Haldol she will start yelling again and the residential home won’t keep her there.
Help or insight would be most appreciated. Thank you
Leslie Kernisan, MD MPH says
Oh wow, this does sound like a difficult situation. You are right, as medical power of attorney you often do have to spend time advocating for your parent, and it’s often a real factor in the stress and exhaustion that people experience.
Well, I can understand why you’d like for her to be less sedated, although “sedated bliss” does sound better than often hollering. One thing I wonder is whether it’s being mostly driven by pain. Oral morphine usually provides relief for about 4 hours (longer if the person’s kidneys are impaired or shutting down). At the end of life people often have pain around the clock, so it’s often appropriate to provide pain medication that is dosed to cover them most of the time. This means either scheduling Roxanol for every 4 hours, or using a longer-acting pain medication. Hospice should know how to do this. You could talk to them and ask about trying this, and then perhaps they could try reducing the haldol somewhat, and seeing how it goes.
I have more information on medications while on hospice here: Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned.
Good luck and take care.
Jina says
I have dementia. At times I’ve felt as if I was going to sneeze…… in a split second I’m on floor, and I’m awakened by screaming! I’m shocked that it is, was, me.
This often involves hitting myself, I can’t stop but I feel no pain. Nothing can stop these episodes, but I am comforted by someone holding me and reassuring me that they are there, and they’ve got me.
Nicole Didyk, MD says
That sounds unusual and frightening. I’m sorry you’re having this experience. If it’s causing harm, then I would tell your caregivers about the episodes so that they can help keep you safe.
HB says
With my mother’s care, I learned more about CYP2D6 and other CYP450 liver pathways and – unfortunately – became more knowledgeable than pretty much every nurse and most doctors. 2 years before hospice, she broke her hip which is when her poor reactions to all opiods – including extreme agitation – began to show. Tramadol after other falls also landed her in ICU with full allergic shock. Morphine does not always mean comfort, and not all adverse reactions happen in just 15 minutes after a dose. I requested but never got a doctor to sign off on limited genetic testing for this pathway although it is covered by Medicare. It was horrible, and at the end hospice surprised me “it’s all we got so we’re going to give it to her.” It still haunts me.
Leslie Kernisan, MD MPH says
Oh, so sorry you and your family had such a difficult experience. Sounds like your mother was unusually sensitive or otherwise unable to tolerate opiates. I haven’t seen that happen very often but it’s really too bad that hospice wasn’t better able to modify the care and medication they provided.
If the experience still weighs heavily on you, you may want to consider getting some additional help processing the experience, because when it goes badly it can be quite traumatic for family. Take care.
Wendy Joint says
My husband aged 84 has moderately severe vascular dementia. I am his carer – age 77 – and responsible for dolling out medication. He is a very complicated case, because he suffers from peripheral neuropathy due to pesticide poisoning, arrhythmia, anaemia probably caused by the osteo-sarcoma of the knee. He already had 2 prosthetic joints in both knees. The anaemia caused some brain disfunction before the cancer was diagnosed, but the disfunction got very much worse after a 5 hour operation to remove the tumour on his knee and replace the joint. Unfortunately this was only partially successful as the cancer metastasised and regrew in the joint, but so far has apparently not spread into the body, and he is having radiotherapy to hopefully reduce the tumour and decrease any pain (not a cure obviously). He is in a wheelchair most of the time. He is ‘hospitalized’ at home and I get a nurse coming in once a day to give an injection of Innohep and a nursing aid twice a day to shower and dress/undress.
My main problem is trying to get the level of Haldol medication right to control psychotic behaviour without totally knocking him out. Also, I do not know whether any of the other medicines need adjusting. His original medicines were prescribed by the geriatric hospital in Montpellier, who have a lot of experience in the field. He is on 5mg Bisoprolol for the heart, 20mg of Seresta (Oxazepam) for anxiety spread through day, 10mg Mianserine for depression – morning, 320mg Serenoa repens and 3gm Paracetomol. The dosage of Haldol is between 25 – 30 drops ( 2 and a half -3mg) three times a day which I give with the paracetomol, as he can be very suspicious that I may be poisoning him. He has also on rare occasions been violent to me when the Haldol wears off, so I have to be careful. It’s very variable. Have you any comments please? I found your article and web site very helpful. Sorry this is so long-winded!
Leslie Kernisan, MD MPH says
Hm. That is a lot of medication that he is on. It’s not really possible for me to make specific suggestions as to how his medications should be dosed.
I will say that it’s a fair dose of Haldol and he is also on the benzodiazepine oxazepam. As I explain in the article, these are considered risky medications and therefore our goal is to use the absolute minimum necessary to control behavior. Also oxazepam is considered short-acting, and the problem with such medications is that they wear off and people almost start experiencing withdrawal; this is less of an issue with longer acting medications.
If paranoia or aggression is an issue, I would encourage you to also seek help from a dementia behavior specialist. There may be non-drug ways to help him feel better and act out less, and to redirect his behavior when he does act out. This would overall be safer for him. Good luck and take care.
Wendy Joint says
Thanks for your comments. I should also have mentioned that he is chemically sensitive after the pesticide poisoning, so should probably be on the lowest dose possible of anything. I may be wrong, but I’ve always French doctors can be a bit quick to medicate, but he was in a parlous state when he was an inpatient at the geriatric hospital. at one point he had to be referred to another hospital with a suspected perforated bowel, which turned out to be an abscess on the bowel which was drained. Reading what you have said about infections making the dementia worse , this explains a lot.
Leslie Kernisan, MD MPH says
Sounds like he — and you — have been through a lot. Yes, a new infection can make confusion or dementia symptoms worse, either due to the pain or because the illness provokes delirium, and sometimes clinicians choose to sedate people who are very agitated in the hospital. (It is supposed to be done as a last resort, and with the least amount of medication needed, and in the US geriatricians would often choose antipsychotics rather than benzodiazepines.)
Good luck with your efforts to get his medications and management under better control. Try to take care of yourself in at least little ways, as best you can. If nothing else, find an online support group; there is an active one at AgingCare.com.
Tanith says
Hi
My mother is in hospital at the moment and we are testing for possible dementia. Both of her parents had it but she is only 64 years old.
Myself and my brothers are taking turns to stay with her 24/7. We have noticed that anxiety makes any memory issues a lot worse. When she’s calm and relaxed she remembers a lot more.
I am here with her at the moment and just took her for a shower. The shower seems to be a major trigger and she’s almost in tears and shaking while I shower her. I try to be very delicate and not let the water fall on her head.
I really want to help her improve but not sure how to tackle this shower issue.
Any advise would be greatly appreciated.
Many Thanks
Leslie Kernisan, MD MPH says
Yes, it’s definitely true that memory and other cognitive functions can get worse when a person is anxious.
Being tested for dementia during hospitalization can be problematic. The main issue is that older adults often develop some delirium during hospitalization, which makes their thinking worse than it otherwise would be. It is best to test someone for dementia when they are rested and in their usual state of health.
For more on hospital delirium, see here: Hospital Delirium: What to know & do
If the shower is currently triggering anxiety, you may want to ask the hospital staff about other ways to keep her clean. For instance, would a sponge bath be feasible for a few days?
Hope your mother gets better soon.
RG says
Hello Doctor,
I have been trying to get some help and answers on what I can do for my mom who is 80 years old and is suffering from fear/scared at night. I think her fear is about someone breaking into the house and such. I have been searching Google for some answers and I found your wonderful article tonight.
Mom’s Neurologist say she does not have Dementia, but does suffer from short term memory loss from a bad fall that would have happened one year ago next month. She had a brain bleed and was in ICU for four days and the bleed ended up clearing up.
Mom had this nervous/fear problem before the fall and was on 20mg Paxil twice a day and 1mg Ativan three times a day. After the fall and hospital stay the fear problem was gone and she was no longer on the Ativan. However the problem returned shorty after and the doctor changed her meds to one 37.5mg Paxil CR and instead of Ativan she was given 0.50 Xanax up to three times a day. Usually taking just two 0.50 (1mg total) Xanax before bed.
Mom’s problem got worse at the end of last year and her Neurologist added 5mg Buspar three times a day to the Paxil and Xanax she was already taking. She improved for several weeks after the medication finally took effect.
Now for the last four weeks or so the problem is back full force. I don’t know what to do? I have spoke to her GP, Neurologist and Heart Doctors about the problem, but they have not offered any solutions, but one of doctors said to give an additional 0.50 Xanax which would be up to 2mg’s total per day.
I wonder if trying a different kind SSRI medication other than Paxil would work better or is that something that should or should not be tried? If so, what would be a good one to try that might work better?
I also wondered about increasing the Buspar to see if that would help, but then I read about Serotonin Syndrome and how that can be dangerous. I was trying to find out what amount of Buspar would be safe to take with Paxil to avoid serotonin syndrome, but have not been able to find the answer.
Mom otherwise is fine mentally other than the short term memory loss as she reads the paper everyday, does Facebook on her tablet to talk with friends from church, watches the news and tv shows and etc. However, she has had three small strokes (believe they are called TIA’s) over the last 4 or so years and the first one made mom unsteady on her feet, so that is the reason for the fall. She also has a pacemaker.
My mom is so precious and loving and it breaks my heart to see her suffer from something I hope is treatable.
If you have any suggestions on medication or combination of medications that I could mention to her doctors that would be so wonderful!!
Leslie Kernisan, MD MPH says
Sorry to hear of these issues affecting your mother, I can certainly see why you’re concerned.
It’s not uncommon for people of her age to have fears or even false beliefs, as I explain in the linked article on common causes of paranoia.
Unfortunately, it’s not possible for me to make recommendations regarding her medications. How to treat her depends on what her doctors think is causing this problem. It’s also ideal to try to manage fears and paranoias with non-drug approaches when possible. Last but not least, in geriatrics it would be unusual to use Paxil because it is anticholinergic, and we would normally be very reluctant to control symptoms with a benzodiazepine such as Xanax or Ativan, because the risks usually outweigh the benefits in older adults who have any issues with falls or cognition.
Especially since she has now been taking several medications for quite some time, my recommendation would be that you look for a geriatric psychiatrist to assess her and assist you. People develop physical and psychological dependence on benzodiazepines quite quickly, and then it’s not so easy to reduce them. A psychiatrist would be best qualified to help you, especially one with special experience or qualifications in helping older adults with a history of cognitive impairment.
While you are working on getting help from a suitably qualified clinician, do try to be as reassuring as possible for your mom. Don’t try to talk her out of her fears, that just tends to make older adults even more anxious and stressed. Instead, look for resources that can teach you how to respond constructively, such as the book Surviving Alzheimer’s (even if she doesn’t have a diagnosis or doesn’t have dementia, the strategies will help). I also describe a few approaches in this article: 4 Things to Try When Your Aging Parent Seems Irrational.
Good luck!