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.
Fran Enos says
First Dr. Kernisan, I would like to thank you for responding to so many posts I have seen. As a medical professional and a family member dealing with cognitive disorders with my elderly mother, it is clearly discernible that the majority of patients and families dealing with these issues have to rely on PCPs and stroke interventionists who lack the knowledge of pharmacological treatment, resulting in the position I am in – wanting to do best for my mother, with very little understanding or guidance.
So here I am asking your professional opinion – My mother is an 85 y/0 female w/ a very complicated history. 13 yrs ago she suffered a ruptured aneurysm in her brain which should have been catastrophic, but after 3 coils and 1 1/2 yrs of therapy had a 98% recovery. After being independent, 8 mths ago she suffered a thrombolytic stroke – resulting in moving to assisted living. 3 mths ago she suffered another thrombolytic stroke w/hemiparesis and a seizure, received TpA and did well. Then while hospitalized fell and struck her head causing a C7 Fx and a TBI. But she has a strong will, and we are now back in a Memory unit, functioning fairly well (fall risk but highly monitored) .
She is currently treated for HTN, Seizures w/ Keppra @ 500mg bid, and Prozac 10mg for depression.
Previously neurologists were using Seroquel low dose for hallucinations, but a 2018 study in the NEJM showed no benefit to antipsychotics, so they switched to Prozac.
Recently she has begun to hallucinate again. While cognitively diminished, she still maintains a pseudo quality of life. Her hallucinations are now impacting that because of physical outbursts at night and paranoia.
Her PCP and Neurologist literally have asked me as to what I would recommend or would just “shoot from the hip”.
I did not see Prozac as a listed drug in your blogs for vascular dementia patients. I completely understand that you can not treat a patient through a blog, so I only ask have you seen any pros or cons with Prozac in hallucinations? This way I will be more informed when I meet with her doctors.
Thank you
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s hallucinations. Fluoxetine (brand name Prozac) is an SSRI-type antidepressant, similar to citalopram, but in geriatrics we tend to use it less because it has more interactions with other drugs, compared to the citalopram or sertraline.
SSRIs do not particularly treat hallucinations, although in some studies citalopram seems to help with neurobehavioral symptoms and psychosis. Also, SSRIs take 6-8 weeks to have an effect.
Honestly, for significant hallucinations that distress a patient or really affect the care environment, we would first check for exacerbating factors (pain, sleep deprivation, delirium, etc) and then if it seemed a medication was necessary, most geriatricians would probably use a low-dose antipsychotic, such as rispderal or quetiapine (whose brand name is Seroquel).
I am not sure what 2018 NEJM article you are referring to; they did publish a negative study on antipsychotics but it was for ICU patients with delirium, so not relevant to your mother.
Antipsychotics should not be first line therapy or used without first trying other options. But sometimes, they are reasonable to use because alternatives have failed. They do help some patients with hallucinations, so that benefit may be worth the risk of falls and also the additional mortality risk associated with them. Good luck!
joseph farkas says
Dear Doctor
My mother is 92 and developed Dementia about 10 years ago. We live in Montreal her neurologist started her on a trial medication that slows the progress of the disease it seems to have worked. I don’t have the name now. My mother was in hell as a young teenager (aushwitz). It’s almost a year now that she developed a severe PTSD that they are coming to get her, hang her outside, she does crazy things because that’s what this are telling her to do. She hides food in her panties etc….. Any suggestions? Her PCP forwarded me your article
Leslie Kernisan, MD MPH says
I’m sorry to hear of your mother’s situation, especially since her perceptions sound like they are causing her a lot of distress! I would recommend having her seen at a specialty center in Montreal, either for geriatrics, for geriatric psychiatry, or for dementia. You could also try to see if you can find a dementia behavior specialist for a consultation, to see if they can help you identify any triggers or contributors to this.
Many difficult dementia behaviors can be managed without antipsychotics but in certain cases, especially when the person is having serious and distressing delusions, we do end up trying antipsychotics. But I cannot say if that’s the route to take with her, she really needs to be assessed by someone who can work with your family closely. Good luck!
Kristine says
This is an excellent article; and the comments and replies are just as helpful. My mother is 75 and has late stage Alzheimer’s. She has been anxious and delusional for many years. We finally tried medical marijuana and it has helped SO much with the anxiety. She can finally just relax and be happy. We are still having a major problem with hygiene and toileting. She becomes very combative. I think we are going to have to move her to a memory care facility because it takes 2 people to clean her up and we just can’t manage. It is very sad because otherwise, we could keep her at home.
Leslie Kernisan, MD MPH says
Thank you for your comments on the article, and an even bigger thank you for sharing your story and your experience.
Medical marijuana is new territory that doesn’t yet have much of a research base. So we don’t know for sure what are the risks for short-term or long-term. But for difficult dementia behaviors, I think it is reasonable to try medical marijuana, especially if it’s about stabilizing the living environment.
Before you move her to a memory care facility, you may want to see if it’s possible to hire a dementia behavior expert locally, to come to your home and see if it’s possible to come up with an approach that works better for your mother and your family. Good luck!
robert says
I am worried about my mom she has been diagnosed with MCI I think she is taking seroquel but she is still having trouble with paranoia and delusions. I was thinking of asking her doctor if maybe she could take an anti depressant instead but the seroquel helps prevent her from sundowning so much any suggestions?
Leslie Kernisan, MD MPH says
Hm, I would say that it would be unusual for MCI alone to cause frank paranoia and delusions. You may want to re-open the conversation about what is the underlying cause of the paranoia and delusions; I discuss the common causes here: 6 Causes of Paranoia in Aging & What to Do
How to treat her paranoia really depends on what the doctors think are the underlying causes or exacerbators. Anti-depressants sometimes improve agitation in people with cognitive impairment but I wouldn’t expect them to be as effective as antipsychotics, for delusions, paranoia, hallucinations, etc.
Regardless of what medications she is on, I would certainly recommend learning about and practicing non-drug management of difficult dementia behaviors. We have an article on that here: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications). good luck!
Adam Escobar says
Hello Dr. Kernisan, My 92-year-old grandfather has Alzheimer’s (stage 6 I believe). After his wife was put in a convalescent facility his sundowners escalated. He became increasingly agitated and hostile, pacing and banging on all the doors in his part of the house (downstairs). He has suffered from sundowners for years but no matter how upset he would get he could always be re-directed by playing billiards with him. His delusions and agitation got so bad I was forced to take him to his Dr. who prescribed Quetiapine. He was started out at 25mg but this had no effect. It was upped to 75mg which seemed to calm his agitation and anxiety. Is this too much for this type of drug?
Leslie Kernisan, MD MPH says
Sorry to hear of your grandfather’s agitation. We do strive to avoid using these medications, but when all else has been tried and failed (including treating for pain and constipation), it can be reasonable to resort to antipsychotics, especially if it’s necessary to keep the person living at home with family.
From 25mg of quetiapine, we would often try a 50mg dose before moving on to 75mg. The higher the dose, the higher the risk of side-effects, so it’s good to try to find the minimum necessary dose. What that is will vary from person to person. If your grandfather seems better on 75mg, it’s probably reasonable to continue or you could ask the doctor about trying to reduce it down to 50mg, to see if that is enough. Good luck!
Louise Sims says
Thank you for your article. Not many want to deal with the actual truth behind these medications, so it was refreshing to read this.
I care for my 87 y.o. mother diagnosed in 2007. She has been in three care facilities, two psychiatric stays which while in one, she almost died from anaphylactic reaction to drug Rozerem. So I moved her in with me and found a medical doctor to work with me on finding the right solution. (she is highly sensitive to medications and has many allergies).
This is what I know: Zyprexa, trazadone, ambien, rozerem, Depakote caused paradoxical effects. Tolerated Haldol and Risperdal but became very Mean.
So, this is what we now do, which is not recommended, but it is the only thing that has worked to reduce her panic, anxiety, emotional distress daily occurrences: ( I likened it to seeing someone in pain of 10 or more on pain scale)
Xanax 0.5 mg. noon. Bedtime: Xanax 1.0 mg, 2 Tylenol pm. and 10 mg. Melatonin
Her cognition is worsening, delusions present and she is so weak = but it calms her enough to function better and she sleeps through the night now and awakes to toilet once. ( I get up to help her because she is so confused and weak)
I would like to try other med besides the xanax but I feel the doctor is tiring and he keeps telling me to place her somewhere. Placing her is a whole other story, we’ve been there, done that. The last time we had finally found a true caring and knowledgeble facility, but 2 months later they ask us to move her out as she was too disruptive to other residents.
Any help in locating a virtual psychiatric physician would be appreciated as well.
Leslie Kernisan, MD MPH says
Thank you for sharing your story. Sounds like you and your mother have been through a lot.
It’s true that generally in geriatrics we don’t recommend a benzodiazepine such as Xanax, since benzos have many risks and often make confusion worse. That said, in the end one has to consider an individual’s situation and medical history, and in some cases, the benefits of using a benzo seem to outweigh the problems and risks. In particular, if a benzo is part of the formula that keeps an older person quieter at night and this allows a family to keep the person at home…that is a big benefit, because as you note, it’s not easy to find a good facility and transition an older person with dementia and difficult behaviors.
I don’t know of any virtual psychiatrists, you would have to search online to see if anyone is offering such a service in your state. Telemedicine is allowed in most states, but usually the clinician has to be licensed to practice in the state where the patient is located. Good luck!
Jo Ellen says
I wish you could be my Mom’s Dr.
You are so compassionate! My Mom’s Dr. doesn’t even acknowledge she has dementia or early signs of Alzheimer’s but I know she does, she lives with me. My Mom is very stubborn and I tried to get her evaluated and she got so mad at me and refused to go back to complete the evaluation. That was 3 years ago in the beginning stages. She takes absolutely no drugs for anything! Her sugar,cholesterol, blood pressure is all good! Her only health problem in life was IBS/chones and she is slightly anemic. Amazingly since the memory loss no intestinal problems at all. Although she is stubborn and doesn’t like to doctor, she has always been a nervous person. She does have lichen simplex chonicus on her shins. I have taken her to 2 different dermatologists. She is OCD over this on her legs. Constantly looking at it, touching it, which is the worst thing they say she can do. The last dermatologist or should I say PA suggested giving her a anti anxiety drug and told me to ask her GP about it. He persrcibed Zoloft today. Now I don’t know what to do after reading your article. My Mom is stubborn but I do see signs of anxiety,because she knows her memory is gone,but she’s so sweet. This skin condition is madding, her OCD with it and it is worse at night and wakes her up often. The only thing they can give her for it for any relief is a steroid cream. Which I think she is addicted to that cream. I don’t want her to take unnessary drugs. And one side effect of Zoloft, some are intestinal problems. Also I certainly do not want the Zoloft to worsen the memory issues. I do think she is depressed too. She never wants to leave the house. I ask her every day to go somewhere and she won’t! She will only go to the Dr. and occasionally out with us to meet my brother for dinner. I have been giving her Tylenol PM once in a while, when her legs really act up. Should I stick with that and forget the Zoloft? Another bad thing for me is, I have no formal dementia diagnosis and my Mom can still hold a conversation, but if you asked her what she ate 5 Min. ago she can’t remember. She won’t remember to eat, if I don’t make it for her. She doesn’t want to bath, fights me on that, can’t match her clothes or pick out what to wear. It’s all signs but her Dr. acts like he thinks she’s fine, because she can small talk.
Leslie Kernisan, MD MPH says
Sorry if your mother’s doctor isn’t acknowledging her cognitive issues, that must be very frustrating. If you’ve noticed she’s forgetful, can no longer pick out clothes, and other changes, then that does sound pretty concerning for dementia. Her not wanting to leave the house could be depression but it could also be apathy, or just the fact that she feels uncomfortable and stressed in unfamiliar situations, that is very common when people develop dementia.
Sertraline (brand name Zoloft) is an SSRI-type antidepressant and it can help with anxiety. You could give it a try for 4-6 weeks and see if it improves things, if not it can usually be tapered and stopped without too much difficulty. Steroid cream does eventually thin the skin and older adults do get thinner skin, you could ask the dermatologist if it’s worth being worried about that. I also wonder if you could keep her from scratching by using moisturizing cream or even an ointment, and perhaps covering up her legs so that she can’t scratch?
Tylenol PM does contain diphenhydramine (brand name Benadryl) which is quite anticholinergic and tends to make thinking worse in older people, so we usually recommend older adults avoid such drugs, especially if they are having memory problems. There are topical antihistamines that you could ask the dermatologist about, if the issue is itchy legs.
Lastly, even if you don’t have a dementia diagnosis and are having difficulty getting one, I would recommend looking for a dementia caregiver support group, either in-person or online (or you can join both). You are going through a lot, and a group can help give you ideas and provide you with emotional support. Good luck!
Teresa Young says
Dear Dr. Kernisan,
My husband has been diagnosed with frontal temporal, vascular and some early onset dementia. He is 67 and now in nursing home. They have from the beginning had difficulty getting care done as he won’t allow them. I have always done his care in the evening. He has been there 9 months. He started becoming weepy andpacing back and forth. More than usual.
He was treated with seraquil but made him more agitative and even with me care was difficult. After arguing with the dr over a month they stopped it.
So they tried risperidone. It worked great for the behavior and compliance but left him with insomnia. I asked if they could give a sleep aide but was told no.
After a week they took him off of it as he wasn’t sleeping and waking up other pts. He was moved to a smaller unit.
He was started on nozinan and is taking 15 mg tid. With 15 mg for break through. He was also started on remeron tid. I just can’t remember the dose. Has not made him more compliant with care. So the took him off the remeron as they felt it wasn’t doing anything and started clonazepam 0.5 bid and now have added valproic acid 250 mg bid. After 5 days I find him more aggressive and verbally billigerant. Cooperation is not much better for the staff, and tonight he hit me when I was doing his evening care.
Any ideas? I have asked them to try the risperidone as he was like a pussy cat. Also on these medications he is weepy one moment angry the next. Yelling and then apologizing the next.
Thank you
Leslie Kernisan, MD MPH says
Sorry to hear of your situation, it does sound difficult. Unfortunately, it sounds like he’s on lots of medications now, so figuring out how to move forward can be tricky. I cannot suggest anything specific, I would recommend you find a geriatric psychiatrist if possible.
I had to look up Nozinan as it’s not something widely used in the U.S., it is apparently a low-potency antipsychotic of the phenothiazine class. These are quite anticholinergic and are related to anti-nausea drugs. I’m not sure why this drug was chosen but in the US, geriatricians generally try to avoid anticholinergics in people with dementia. There are antipsychotics that are less anticholinergic, risperidone would be less anticholinergic.
Regarding sleep and dementia, I have some suggestions here: How to Manage Sleep Problems in Dementia. Good luck!
Marcy says
Dear Doctor Kernisan,
My Grandmother was diagnosed with moderate Alzheimer about 9 years ago. We found a daily living system that seemed to keep her disease at bay. She lived her days very happy: She walked twice a day, she helped with tiny easy task(kitchen or folding clothes), she did children’s puzzles & math, practiced writing, & read. we kept her busy to avoid her mind from going into negative thoughts. As her disease progressed she developed a sweeter disposition. we kept her medications limited to Exelon patch, namenda, citalopram & melatonin. The last three years, although she spent her days happy, her evenings were tough. She would wake up in states of hallucinations & panic. Regardless of the challenge we did not use sleeping medications. in severe moments we gave her nyquil. Then about two months ago she had one of those episodes during the day. We broke into our emergency medication Doctor had ordered, Alprazolam. Then about three weeks ago, she started with more frequent uncontrollable daytime attacks. Doctor increased her namenda. Then 10 days ago it went out of control in a continuous state of despair, & severe panik. The Alprazolam was only effective for three days and the Haloperidol for only one day. We never expected to go from good circumstances with Alzheimer to Horrific ones within days. Nothing works. If this was your patient what would you recommend? We understand that any recommendation you provide is simply ideas for us to run past our doctors. We just need ideas. We want her to spend her last days with us and outside of a care facility. Thank You,
Leslie Kernisan, MD MPH says
Sorry to hear of your grandmother’s worsening symptoms.
Well, as you can perhaps tell from the article, for my own patients I would not choose a benzodiazepine such as alprazolam as the “emergency medication” to use in case of crisis. Usually in geriatrics, if we absolutely have to use a medication for such an acute emergency, it would probably be a small dose of antipsychotic. We would also start by carefully investigating to see if the older person is experiencing pain or some other trigger for the worsened symptoms. For instance, sometimes older adults develop a new compression fracture in their spine.
It is hard to say what you should do at this point. If she has been getting benzodiazepines most days, she may actually start to experience some withdrawals or dependence. I would recommend a careful search for triggers and aggravating factors, treatment of pain and constipation if any, lots of reassurance. Sometimes if the situation is really difficult and the highest priority is keeping the older person at home with family, we do use medication — even antipsychotics sometimes — and we do sometimes have to keep increasing the dose.
If you can find a geriatrician, geriatric psychiatrist, or dementia care expert to help you in person, that would be ideal. Good luck!
Vanessa says
thank you Leslie for such a resourceful article!
My 70 year old dad in China is diagnosed with AD in early 2015 (symptom may occured a few years before that), he is on exelon minimal dosage daily. his memory loss is mainly short term ones and his cognitive ability is actually not harmed a lot (Dr was surprised). but since 2016 he started to be aggressive to people, paranoid about some old mishap and start to have high sex drive and act aggressively, he would intrerrupt my mom’s sleep for sex, and quoting above mentioned old mishap and accuse her for betrayal. my mom is under great stress and I want to help.
the doctor recommended 2.5mg polanzapine per day. he just started 3 days ago. According to your article, quetiapine is safer, so should we switch? what do you suggest in other ways to help him? he is not on any other medication, blood pressure (90/140), actively training for pingpong, fit, decreased appetite. when he is in good mood, he acts very normal and intelligently.
Many thanks,
Vanessa
Leslie Kernisan, MD MPH says
Sorry to take a long time to reply. So, quetiapine is considered safest if one suspects Lewy-Body dementia (LBD), which is associated with visual hallucinations, REM sleep behavior disorder, parkinsonism (stiffness, tremor), and/or dramatic fluctuations in alertness and cognitive ability. People with LBD are very sensitive to drugs that block dopamine, which most antipsychotics do. Quetiapine blocks it less than the others.
You may want to ask your father’s doctors if they have any reason to suspect Lewy-Body dementia in him. The little bit that you describe sounds like it could be consistent with vascular cognitive impairment +/- Alzheimer’s changes, which is a fairly common combo in older people. (Lewy-Body dementia can also co-exist with either vascular dementia or Alzheimers.)
You can also see how your father has been doing with his olanzapine…if the side-effects have been tolerable so far, then I’m not sure that there’s likely to be much advantage in switching.
Otherwise, some people with dementia do become hypersexual. How to best treat this is not yet well-researched. Generally a reasonable first approach is to start with an SSRI-type antidepressant, such as citalopram or sertraline, because these have decreased libido as a known side-effect and they are generally well-tolerated. Here’s a scholarly review that might be useful for you:
Treatment of Inappropriate Sexual Behavior in Dementia
In general, I would recommend that your mother get some time off from being with your father…scheduling someone else to take him walking or exercising regularly is often a great help to spousal caregivers. Also helps to learn strategies for coping with the difficult behaviors. Good luck and take care!