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.
Mary Arredondo says
My mother was just put in nursing facility because of her declining dementia and combative behavior. My sister who is her caregiver has not been able to touch bases with the facilities physician. She wants to know why she is on Klonipin. Do they usually give Klonipin to dementia patients. This physician will not return calls.
Leslie Kernisan, MD MPH says
Yikes, this does sound potentially worrisome.
I would say it’s not uncommon for people with dementia to be prescribed a benzodiazepine such as Klonopin. However, as I explain in the article, this is probably not the best way to approach agitation, since benzos often cause side-effects, increase fall risk, and have not been proven to be effective.
They do tend to sedate and settle many — but not all — older adults, but there are better ways to manage agitation and using tranquilizers should be a very last resort.
Also, Klonopin (generic name clonazepam) is very long-acting; for an agitation episode, it is more common to prescribe lorazepam (brand name Ativan), which doesn’t last as long.
I would encourage your family to keep up your efforts to contact the prescribing clinician. You should also be able to bring your concerns to the administration of the facility. Find out who the leaders/supervisors are, ask to speak to them, and put your concerns in writing (this creates a paper trail).
Every state also has a long-term care ombudsman program; they work “to resolve problems related to the health, safety, welfare, and rights of individuals who live in LTC facilities (i.e. nursing homes, board and care, assisted living, and other residential care communities).”
https://www.acl.gov/programs/protecting-rights-and-preventing-abuse/long-term-care-ombudsman-program
You can sometimes motivate facilities to be more responsive by letting them know that you will be contacting the ombudsman if your concern isn’t addressed soon. Good luck!
Siew says
Hello,
My dad was diagnosed with Alzheimer’s disease about 3 years back. He was easily agitated when he couldn’t remember or perform daily task. He was suspicious of my mom and always accused her for stealing his money. Doctor gave him Memantine and 25mgr seroquel. But we found that he couldn’t intellect well, couldn’t perform daily task, couldn’t process or interpret what we talked to him and sometimes get agitated (his face will turn very red when his behavior started). Should we stop giving him the Seroquel as I read somewhere that this drug is not good for elderly with Alzheimer’s which will worsen his intellectual function?
Leslie Kernisan, MD MPH says
Quetiapine (brand name seroquel) and other antipsychotics are somewhat sedating and so in many cases are reducing difficult behavior just by chemically restraining the person. So they should really be used as a last resort, usually if an older person is so paranoid or agitated that they are posing a real danger to themselves or to family.
As I explain in the article, there are a variety of non-drug ways to help people with dementia cope with frustration or other issues that might be distressing them. If you haven’t already done so, I would recommend reading the linked article on tips for Alzheimer’s Caregivers. I also like the book Surviving Alzheimer’s, which offers lots of practical suggestions for families.
Although remaining on antipsychotics is risky, you should be careful about stopping or reducing them. Behavior often gets worse unless a family or care team has put some effort into otherwise supporting the person by responding in a thoughtful manner to their needs. It can also help to provide the person with dementia with additional exercise and enjoyable social activities.
Do bring up your concerns with your father’s doctors. I hope they will be helpful to you. Good luck!
idris jalil says
i am currently taking care of my mother in law. i believe she has dementia. she is 88 yrs old and cannot walh properly anymore. she needs help with everything but that is ok because it is our duty to care for the in their old age. her behaviour is getting increasingly irrational each day and a lot of times she cries for help and say inappropriate words. at night it is worse. only in the wee hours of the morning when she is exausted does she sop and sleep for hours then it starts again. my wife and i have tried various methods using psychology as we know it but it doesn work. please comment . its been a long time since we had a good night sleep.
Leslie Kernisan, MD MPH says
Sorry to hear of this situation. It is not uncommon but it is certainly very difficult.
If she has memory and thinking problems and behaves irrationally during the day, I would encourage you to learn more about how to manage dementia behaviors. This can reduce your stress and might help your mother in law feel better. There are a number of books available on managing dementia behaviors. You could try Surviving Alzheimer’s, by Paula Spencer Scott; it has lots of good reviews. (She is a former colleague of mine.)
Regarding addressing the sleep issues, I explain how to do this here: How to Manage Sleep Problems in Dementia.
Basically you want to try to address any pain or other discomfort your mother might be in. You should also try to regularize her day time schedule, and make sure she gets exposed to sunshine, fresh air, and exercise if possible. I cover medication options in the article; most are quite risky for older people with memory problems, but there are a few safer options you can try.
Research has found that it’s possible to improve the sleep of people with dementia, but it usually takes a comprehensive multi-pronged approach. So, no quick fixes are usually possible, but it should be possible to improve the situation. Good luck!
Kendra says
Wow this is awesome! My mommy is 65 and was diagnosed with early dementia over ten years ago. She is now living with my family. Im having issues with her and her pain meds. She often request them seems to be every hour. I find myself saying its not time yet or I just gave it to you. She becomes angry and difficult when I tell her the time igave her the pain meds. She insist that i allow her to take her own meds how she wants them. I tell her that I cant do that because she forgets that she has taken them and over medicates. Its veey obvious that she has an dependency on the oxycodone 30mg pills. And being and ex addict does not help the matter. She accuses me of taking her meds or wanting control over her. She is belligerent and down right mean. Her doctors advised me that she is not competent to take care of herself or others(3grands she adopted). But I have no poa or conservatorship over her or them. Help what do i do?
Leslie Kernisan, MD MPH says
Yikes, that does indeed sound tough. Especially with her dementia, I can imagine it might be hard to get her to cooperate with non-drug methods of managing pain and a program to slowly reduce her dependency on these medications.
One approach that sometimes helps, in such situations, is to switch the pain medication to something longer-acting and harder to abuse. For instance, opiate painkillers are available as a patch; a fentanyl patch is changed every 72 hours. Methadone is another medication that is quite long acting, but is taken as a pill or a liquid, once daily usually.
You might also be able to help her feel better — which could improve behavior — by treating pain with non-opiate medications, such as lidocaine patches or over-the-counter creams. Often people want to feel like “something” is being done, and those approaches are safer than continuing or increasing high doses of opiates.
In terms of capacity and competence: if her doctors think she can’t care for herself or her affairs, and you don’t have a durable power of attorney, then in most states you will need to consider requesting guardianship/conservatorship through the court system. Elderlaw attorneys can help with this, but if money is an issue, then definitely start by checking with your local Area Agency on Aging and also consider reporting her to Adult Protective Services (APS); APS can sometimes initiate conservatorship proceedings.
I have more about capacity and competence here: Incompetence & Losing Capacity: Answers to 7 FAQs
Good luck and don’t forget to take care of yourself; this sounds stressful and you may be in this situation for quite a while yet. There is an active online support group for caregivers at AgingCare.com; that might be a good place to get moral support and ideas for how to proceed.
isabelle says
hello,
My mother had LBD its been gong on for years. i have noticed that her apetite has increased dramatically from being dicreased. She takes 50mgr seroquel each night and is a small person weighs 36 kilos. she has night sleeping disorders. im wondering if after 5 years on this drug if it is necessary and if it actually does anything. she still gets ideas stuck in her head and scenarios that didnt happen. and is no longer interested or can’t follow a film but keeps herself moving wanting to bath and dress and chattering all the time without noticing if anyone is there.
Leslie Kernisan, MD MPH says
Sleep disturbances are very common in dementia with Lewy bodies. Rapid eye movement (REM) sleep behavior disorder is especially common. Recent research suggests that this sleep disorder often can be treated with melatonin, which is safer than many other medications for older adults:
Melatonin Therapy for REM Sleep Behavior Disorder: A Critical Review of Evidence
50mg of seroquel sounds like a pretty sizeable dose for a woman her size. It is hard to say what it is doing for her now; it might be helping her sleep at night, but it’s possible that she could sleep as well or nearly as well on a smaller dose. You could certainly talk to her doctors and ask if it might be possible to try reducing her dose, and seeing how she does. You could also ask about trying melatonin to manage any sleep disorders.
Antipsychotics do increase fall risk and can leave people less alert than they otherwise would be. So it’s generally reasonable to attempt tapering them down at least a bit. Good luck!
Diane says
I really appreciate the content of this article. My 93 yr old mom has dementia (most likely Alzheimer’s type). Now in the later stages, she is exhibiting an overwhelming fear when toiletted on the commode/toilet. With her slowed cognitive processing, it is necessary to give her visual and verbal cues before attempting to help her pull down her depends to toilet. She screams out in fear because of misinterpreting what is happening to her. It is heartbreaking to watch her in such distress every 2 hours to toilet; and it is heartbreaking for her caregivers who are trying to help her. Any recommendations are welcomed. Are meds appropriate?
Leslie Kernisan, MD MPH says
Oh, this does sound like a heartbreaking situation.
There’s not really a good medication for handling this. You probably can find a doctor willing to prescribe a sedative or tranquilizer, such as lorazepam (brand name Ativan), but this will further cloud her thinking, will make her balance worse, and could even paradoxically agitate her.
So it would be much much better to find a different way of handling the solution. The best would be to learn more on non-drug dementia behavior management. My former Caring.com colleague Paula Spencer Scott has researched this extensively for her book Surviving Alzheimers, which is a great resource for families, and here’s what she suggests:
“The behavioral approaches I know of would be to first try to assess the cause(s) for her distress: Is it pain? (So, UTI or constipation possible? Is she eating/drinking enough, could a medication be causing the problem?) Or are perceptual changes causing a fear of the water (common) or of falling as she tries to sit, or of falling in?
Worth considering: When does the distress begin? When they start to lead her to the toilet, once she’s in the room trying to sit, or after she’s seated? Could assists like a higher seat or frame around the commode help ease anxiety of falling as she sits? What might be happening when this older person is “misinterpreting”? Could it also be an anxiety about privacy?
It’s also possible that now a negative association has been set up with whoever is leading her to the bathroom, and the whole business is an unpleasant experience for her. That might warrant a whole different approach –not, “time to use the toilet” but sort of cajoling her along and just happening to be there, inviting her to sit, etc. which can be a very time intensive process; if the caregiver is stressed or rushing or tense about it, she’ll pick up on that. Might warrant an entirely different person and approach to doing this, which isn’t always feasible.”
Probably the most effective way to get help is to get a consultation with a dementia behavior expert for some specific trouble-shooting suggestions. The ideal would be someone who could observe the situation with your mom and model a different approach for the caregivers, but a Skype or phone consult could also be useful. Teepa Snow is one of the best-known experts on the compassionate person-centered care of people with dementia; consider looking for a local professional who has been certified in Teepa Snow’s method, or in something similar. (You can find a list of independent consultants certified in her method here.)
If you can’t find a consultant or if cost is an issue, try to find an educational event in your area, on personal care of people with dementia. They are sometimes offered by non-profits, by memory centers, or even by memory care facilities.
Last but not least, consider whether it’s absolutely necessary to use the commode for toileting, and whether it’s necessary to use it every two hours. If it’s creating this much distress or effort to manage, you might find that the burdens outweigh the benefits of this type of timed toileting. There are ways to manage toileting without ever sitting an older person on a toilet or commode, and although they have some downsides, it might be worth it to spare your mom the distress she’s currently experiencing, esp if you aren’t able to get someone to help you make the toileting more bearable for her.
Good luck!
Christina says
Hello,
Thank you for such an informative forum. I was wondering, of the chemical restraints are any commonly known to disrupt thermoregulation?
My brother was diagnosed with M.S. as a 12 year old, is now 51 and has slight behavioral alterations. He has been living in a care facility for the past 6 years and overall has been cordial, compliant and manageable. Over the past 8 months he’s been refusing to eat, drink or take his medication. He’s been making statements such as,”This isn’t my medication” and “I’m not suppose to be talking to you.” and “I know you’re not real, you’re just pretending to be real.”
He’s been in and out of the ER over 10 times now for his body temperature dropping to 91 degrees. Everytime before a trip to the ER, our family has noted severe cognitive loss and confusion. Between the severe changes in his personality coupled with thermoregulation issues I’m concerned about either accidental overdose or intentional medicinal abuse in his care facility. Is there a way to request a toxicology the next time he’s admitted into the ER? From my understanding, only items such as alcohol, marijuana, heroine, etc are evaluated in a standard toxicology but I’m wondering about drugs such as ativan or risperdal, etc.
I realize it’s a sensitive issue and don’t mean to insult anyone. Caretakers of these difficult patients are amazing for what they do. Then again, some of them are burnt out and need to change jobs. It would put my mind at ease knowing he was tested (with negative results) so we could move forward exploring a neurological explanation.
Thank you for your time.
Leslie Kernisan, MD MPH says
Getting an elevated temperature is an unusual but known side-effect of certain drug exposures. I have not heard of developing hypothermia in response to medication, but apparently it has been reported in the medical literature.
Hypothermia Associated With Antipsychotic Drug Use: A Clinical Case Series and Review of Current Literature
If you suspect his hypothermia episodes are related to drug exposure, you may want to start by asking to review his “Medication Administration Record” (MAR). Residential facilities are usually required to maintain records of every time they administer a drug to a person. Your brother’s guardian or durable power of attorney for healthcare should be able to request this information. It would be extremely unusual (and highly illegal) for someone to be giving him medication and not document it.
You could also try asking the ED doctors; they should be able to tell you what kind of specialized toxicology might be available. Understanding your concerns might also help them figure out what is happening to him during these episodes. Good luck!
Sally Chezem says
Are there any patches or other forms of severe behavior medications for dementia in a resident who will not eat or drink? Therefore pills cannot be crushed, given in liquid or given whole because she spits everything out. She will eat a muffin at times when her spouse feeds her. Thank you.
Leslie Kernisan, MD MPH says
I know that Exelon (rivastigmine) is available as a patch; not sure about the other medications. I would recommend asking a pharmacist to help you identify other medications that may be available in patch form.
Crushed or liquid medications are also sometimes served mixed with applesauce or pudding.
Aromatherapy is not a behavior medication per se, but some studies have found that aromatherapy massages improve behavior. As I mention in the article, it’s important to explore non-drug methods of helping people with dementia feel better, and of managing difficult behaviors. Good luck!
H. O’Connor says
I’m a hospice and palliative nurse and have seen compounded meds from a compounding pharmacy of Ativan and haldol made into a topical gel to place on the skin and it worked wonders for scary hallucinations , paranoia, and hyper sexual ideas. We had the staff put between shoulder blades so the patient couldn’t wipe it off. We even discharged the 90 something patient from hospice since she was doing so well. A real success story.
Leslie Kernisan, MD MPH says
Interesting. I’m not familiar with this type of topical application, but it is indeed very common for hospice providers to use both Haldol (an antipsychotic) and Ativan (a benzodiazepine tranquilizer) to treat agitation or restlessness.
That said, it’s not at all clear that there’s a good evidence base for using lorazepam (brand name Ativan) to treat agitation or restlessness in dementia patients on hospice. I discuss this in more detail in this article:
Hospice in Dementia, Medications, & What to Do If You’re Concerned.
Still, I’ve seen older patients get better and “graduate” from hospice; many of them benefit from multi-disciplinary care, comprehensive attention to their symptoms, and perhaps even discontinuation of other medical care. Nice that things worked out well for your patient.
Joan says
Thank you for this helpful article. I think I have some helpful information to ask my husband’s Doctor on Monday. My husband is in late stages and I need help with his medications desperately. It’s hard to know what causes his behaviors the meds or this horrible disease. Again thank you.
Leslie Kernisan, MD MPH says
Sorry you are having a hard time with your husband. Yes, it can be hard to figure out what is causing or contributing to someone’s difficult behaviors.
I hope your upcoming conversation with the doctor is fruitful. Good luck!
fitjulie says
Hi,
Thanks for this site – so much useful info! Are there any good – unobtrusive – GPS devices which can be used to track wandering elderly? My father has dementia, still fairly functional, but now gets lost or confused when out in public – going to bathroom, at grocery store if he gets separated even for a moment. I was thinking the Find My iPhone app, or can a fitbit be used? I’m hoping to find something easy for my mom to use, and something that seems normal and doesn’t make him feel like a naughty child. Is there a good information site you’d recommend? A quick google search turns up lots of devices, but could use a trusted resource for info.
He does see his doc next week, and she will check med levels to see if anything needs tweaking.
Thanks.
Leslie Kernisan, MD MPH says
Good question. I am hoping to research this issue in greater depth, but not sure when I’ll be able to do so.
Some of the Fitbit models do have built-in GPS, but I’m not sure whether this would enable family to track a person.
There are some GPS tracking devices designed for people with dementia, which can go on the wrist or around the neck. The challenge is getting an older person to wear them. Some of the wrist devices are designed to be hard to remove.
There are also GPS insoles (“SmartSoles”) which are less likely to be noticed by the person with dementia, however they are expensive and need to be recharged every few days.
Like you, I am still looking for the trusted resource on this topic! Perhaps we can update each other as we find them. In the meantime, you could try one of the devices available on Amazon…if nothing else, the return policy is usually more generous than other sites, plus there are often reviews from other real users.
Last but not least, if you are considering GPS tracking, I recommend taking a moment to review the Alzheimer’s Association two page statement addressing the risks and benefits, as well as the ethical issues:
Electronic Tracking (Alzheimer’s Association)
Good luck with your upcoming doctor’s visit!
Sue Robinson says
I bought a child’s Gizmo from verizon for my husband. I can track him on my phone Also with the push of one button he can call me. I can call him and even if he doesn’t press the button to answer it will automatically connect. The monthly cost is minimal and just added to my verizon bill.
Leslie Kernisan, MD MPH says
Thanks for sharing this suggestion!
Debbie rinck says
I use GreatCall for my dad. I have his cell phone and now have a neck devise . This works great. I have app on my phone and also can move with him to his cottage . My brothers can also see where he is if I give them permission. Weekly updates and fall alerts. I also use medminder medicine box. It lights up only when time is correct to take medicine and will alert me via text or phone calll or both of my dad does not take the Meds with in the time period I set up . Very helpful
Leslie Kernisan, MD MPH says
Thank you for sharing these suggestions. You may want to post them on one of our other articles on tools for caregivers, too.