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 Ellen says
Mom 93, dementia mild then had a TBI. Personality changed long story short she is in a memory care. I had her off the Depakote for several months and only on Memantine. She also wanders all night and sleeps all day which I think is her major problem. Her agitation and aggression is increasing lately and they want to start back on Depakote and add Seroquel. I’m not really wanting to cloud her and take away any clarity she has left so I want them to try Zoloft and Melatonin. I think if we can take the edge off and try to change her sleep cycle it might help. She is starting in the later stages of the disease, hallucinating more, sleeping much more, trouble with speech, etc. She remembers everyone and everything so I’m trying to not turn her to much with antiphycotics, etc. Any thoughts? Thank you.
Nicole Didyk, MD says
Hi Mary Ellen
In the more advanced stages of dementia, the changes you describe are very common – day-night reversal, responsive behaviours that can appear aggressive and restless, and personality changes. Most of the time medication alone is not the answer and as you point out, all psychiatric medications can have unwanted side effects.
Although we generally try to avoid antipsychotics (like seroquel) in older adults with dementia, when I see patients with disturbing hallucinations, they can sometimes improve quality of life.
Unfortunately, in later stage dementia, every decision about medication is going to involve a trade-off between therapeutic effects and side effects. I usually advise looking at any environmental or behavioural strategies that can be used along with medication. Early referral to palliative care can also be beneficial, to address any physical symptoms that can drive behaviour.
Elizabeth says
Dr. Kernisan
Thank you for the wealth of information and assistance this article and comments provide. My father was diagnosed with vascular dementia a few years ago in his early 60’s. He’s 67 now and it’s progressed fairly quick. We are currently dealing with paranoia related to his reflection and his shadow. Have you heard of this before? He’s literally convinced his reflection/ shadow is a bad guy. It is a struggle for my mom to keep mirrors covered or try to distract him when he’s particularly agitated by the shadows. He’s been prescribed seroquel and until reading your article I was convinced the doctors had it wrong. Thank you. Sadly, we don’t see much improvement and it’s heartbreaking that we will have to make the decision to put him in a facility in the all too near future.
Nicole Didyk, MD says
Difficulty with recognizing oneself is not that uncommon in dementia, and it is very challenging as you describe. Delusions in dementia are best managed with a multifaceted approach: caregiver support and education, environmental changes (like covering the mirrors) and often, medications. I made a short video about so called “responsive behaviours”, which you can view on YouTube, here.
You can also read Dr.K’s answer to someone in a similar situation.
Medications like seroquel (quetiapine) have a place in managing responsive behaviours, but it has to be done with other approaches as well. If the seroquel isn’t working, the issue may be that the dose is too low, or that another medication of the same type will be more effective.
The behaviours that come up in dementia are almost always transient – they don’t last forever, even though it feels like it at the time. I hope some of these suggestions are helpful and I want to commend you for reaching out to the website to try to get help for your parents.
Lynda Bryson says
My mother in law is 99 years old with dementia and has been in a memory care facility for 15 months. She was diagnosed with dementia several years ago and was able to stay in her home until she was no longer able to take care of herself. She has become increasingly agitated, belligerent, and anxious although the staff at the facility have tried many of the non-medical approaches you’ve suggested. Recently, the facility doctor suggested trying Depakote to see if that might help. The only medication she takes is thyroid hormone (her thyroid was removed 50 years ago), and after learning about the possible side effects of Depakote and other possible medications, we are concerned about giving this type of medication at her advanced age since she has lived most of her life with little to no medications. We would consider some type of medication to help her, but we’re not sure where to start. What would you suggest?
Leslie Kernisan, MD MPH says
Sorry for delayed reply, it looks like we had some comments fall through the cracks when doing our responses.
I’m sorry to hear of your mother in law and can certainly see why you are concerned. If non-drug alternatives have been tried and she is really very distressed, then it’s reasonable to try a medication, but unfortunately, they will all come with risks and side-effects.
Personally, I have much more experience prescribing small doses of antipsychotics than I do with depakote, so that’s where I usually start. So for instance, 0.25mg of risperidone or 12.5mg of quetiapine. Please note that these doses are quite small and are much smaller than the usual starting dose,, but that’s because in geriatrics we usually say to “start low and go slow”. If she doesn’t seem to respond, the dose can be increased. Good luck!
Dave M says
Very good article. Our mom is 96 and in good heath but has dementia. The Demetria is getting worse and she is now being combative with health care workers and hitting others. She also paddles around the floor (meaning walking in her wheel chair) all day long. With our consultation, the doctor prescribed seroquel. Getting the right dose was based on trial and error but the drug was not working. Moths later, the agitation increased and we agreed to try depakote. Small doses first but no change. The dose was increased and still no change. The dose was increased again nut turned out to produce a chemical restraint and has been stopped. We are lucky she is in a wonderful place with nurses and doctors on site that truly care for her. We are now considering next steps. I will suggest constipation and depression for discussion. Don’t know where we will go from here but maybe try medical marijuana or some simple anxiety meds. Thank you Doctor.
Leslie Kernisan, MD MPH says
Sorry that you’re having difficulty figuring out how to help your mother, but glad if this article was at all helpful. Along with considering the possibility of constipation, you could also consider pain and see if she’s better on a low dose of pain medication.
You could also see if getting her more activity would help, as it sounds like she may be a bit restless or have extra energy that she needs to direct somewhere.
I can’t particularly recommend medical marijuana as there isn’t yet enough of an evidence base, but anecdotally it seems to help for some older adults. And if she is 96 with dementia, I think it’s reasonable to try a variety of options and just see what brings her a little daily relief…the long-term consequences are much less important to think about at this point. Good luck!
Saad says
Hey Doc,
My grandfather is suffering from Dementia Alzheimer from last 2years, in the beginning he was easily handle with care but now from last 3months he is unstoppable he wanders whole day like he wakes up after the sun rises, mostly 7am and starts walking and walking and continuously walks till 8pm (Time goes up and down). From last week its getting worse day by day. He starts beating himself more than before hitting his head in the wall, bashing doors and asking everyone who crosses the street to come near him and accompany him, we gather around him to give him company but he runs from it and asking others to come and join him, now he is not sleeping at night, medicines are not effective no t even with heavy dose, yesterday he woke up at 8am ate breakfast had his medicine and after 12pm it stopped effecting his mind and he started wandering like aphid you can say and he didn’t sat for a single second whole day and wasn’t ready to sleep at night too, we took him to the hospital and had him two dosages of Injections of serenus and fenergan but they worked for 5minutes on watch but after that he was like that again beating himself we tried to ask him what’s happening or why is he doing this ajd his answer was the old one that i didn’t do anything everything is good, i swear to God i don’t know ill do what you’ll say and after few seconds he forgot everything he said and doing that again. After 4am he was extremely exhausted and fall onto bed and slept barely waking up after every 20minutes then again i told him to sleep again and again, at 7am he was standing in front of the door saying i need to go home. Kindly tell me what to do which medicines should we try, what precautions we should take and how to get him sleep when he is so much hyper. We tried every possible solution.
Ill be obliged for your concern.
Regards.
Leslie Kernisan, MD MPH says
Sorry to hear of your grandfather’s difficulties, it sounds very tiring and stressful for everyone.
Unfortunately, it’s not possible for me to tell you what medications to try; you will need to work with whatever health provider prescribed his current medication. It does sound like he has a lot of energy in some ways; for some dementia patients, it helps to give them an opportunity to walk and discharge that energy. You will also want to ask the health providers to help you make sure he’s not in pain or constipated. A structured and regular routine with exercise and activity is good for many people with dementia. Good luck!
Jcure says
My expertise includes Medicare, Medicaid, 340B, health reform and more on,Your site is absolutely fabulous. I recommend it to my Home Health Aides and my patients the same,Very helpful for Senior Care providers and Caregivers! for more info
Leslie Kernisan, MD MPH says
Thank you!
Cathy dennis says
I am 58 diagnosed with pca. I am very scared I don’t like medicine I had insomnia for 8 months after a fall on ice and hip surgery I now sleep ; to 6 hours but I scored low on cognitive test I just started aricip I don’t like pills I am so depressed how did this happen I was healthy before I fell now some days I can’t write my name or write checks for bills this is a horrible way to live no support groups in my area I a. lonely and scared
Leslie Kernisan, MD MPH says
I’m not sure what is “pca” that you are referring to. But sounds like you’ve been given a worrisome diagnosis, and that can be very hard to adjust to. My main recommendation would be to look for support groups, for people with your diagnosis. You can probably find some online, and they can be real lifelines, especially if there are no groups in your local area. Online, you should be able to find groups specifically for relatively young people who have a cognitive issue. Good luck and take care!
Michelle says
My comment is not exactly related to this blog, but was the closest related subject I could find under which to post. My mother in law recently fell and cracked a disc. The doctors have told her she will be a in a lot of pain for around two weeks and then we’re hoping the pain starts to get better. In the mean time, she doesn’t want to take the opioid medication she was given because if gives her terrible nightmares and also makes her very constipated. The doctor tried to lower the dose and combine it with Tylenol to see if that might help, but she said she still had the symptoms and now won’t take it. Meanwhile, she’s in a lot of pain. So my question is, what are some of the most effective methods for pain management for older individuals when they might be sensitive to some of the more common choices? She is 83 year old and also very tiny and frail…I guess I’m also wondering if common physical characteristics of being elderly play-into medicine challenges/reactions?
Leslie Kernisan, MD MPH says
Sorry to hear of your mother-in-law’s fall. Acute pain like this can be tough to manage. Yes, as people become older, they often become much more susceptible to side effects. I do sometimes use low-dose opiates for these kinds of situations. For someone tiny and frail, a half-tablet might do. Although people may have some bad reactions to one type of opiate, they often tolerate a different one better, so sometimes switching helps. Re constipation, the answer there is to take laxatives when taking these kinds of pain medications!
There are sometimes other options to consider too. Topical medications (creams, gels, patches) have relatively few systemic side-effects. Most oral medications will come with risks and side-effects, but if the pain is really bad, it can be worth considering.
Really, the key is to keep working closely with the health providers and keep researching options. Good luck!
Diane Franklin says
I have been living with FTD for a decade, and the most scary and debilitating symptom is overwhelming rage. The worst trigger is noise. I was doing quite well and considered my home to be my sanctuary until next door and across-the-street neighbors moved in; one of them uses loud gas yard equipment and the other bounces a basketball and plays loud bass music. I have no escape, and when irritation turns to aggression and escalates to rage, my behavior goes from thoughts and mutterings to cursing them out loud and can culminate into a screaming rants as i walk toward their houses to verbally kill them. Thank God for shoving me into my house and restrainimg me,
For years my doctors have continued to up dosages or change meds to even stronger antipsychotics. My current menu contains
450 mg trileptal twice a day,
69 mg adderalll xr
60 mg prozac,
100 mg ultram,
200 mg trazodone,
10 mg ambien, and
10 mg xanax twice a day
I have added senna and magnesium for chronic constipation which sometimes helps.
i am so sorry for this rambling but there is a point…I have never heard you mention that there are specific strains of marijuana found in clinical trials which provide great relief and temper aggression/anger (and other behavioral symptoms) in many forms of the dementias. My wish is to minimize and /or hopefully eliminate the nasty meds, their side effects, and the monthly expense on my fixed budget.
Thanks for listening.
Leslie Kernisan, MD MPH says
Sorry to hear of your FTD diagnosis, that must be a challenge to live with.
I don’t write about medical marijuana in my articles because I generally share what is considered common practice in geriatrics, and cannabis products are not currently common well-established practice. I have looked it up a few times in response to reader comments; basically, we don’t yet have the research base we need.
Personally I think for people with significant progressive conditions, it’s not unreasonable to consider whether a marijuana product might provide some symptom relief. I would recommend discussing your interest in trying this with your usual neurologist or health provider. good luck!
Fran says
Thank you very much – this is extremely helpful in assisting in our next step and direction. Also, thank you for pointing out the study that was referred to me and I referenced was the ICU study you referred to. My mother was placed on 12.5mg Seroquel after hallucinations last year post her first stroke. She continued that – with no untoward side effects – until her new current neurologist took her off it and switched to Prozac. I will be meeting with her PCP next week. Thank you again !
Fran E.
Leslie Kernisan, MD MPH says
I am glad you found the article helpful. Good luck with your upcoming medical visits.