This week’s Q & A call was about how to better manage health and healthcare issues, when you’re taking care of someone with a dementia such as Alzheimer’s.
Most of the caregivers’ questions were about delirium. This is the state of worse-than-usual confusion that people can develop when they are sick or under serious stress.
I love talking to Alzheimer’s caregivers about delirium, because this is a really common problem that family caregivers absolutely can do something about!
The key is to know that people with dementia are especially prone to get delirium when they fall ill (especially in the hospital). And then you’ll want to know the basics on how to spot this problem, and how to get the doctors to address it properly.
A fact I wish more caregivers of elders knew: delirium can be the only obvious sign of a potentially serious health problem, such as a heart attack, a urinary tract infection, or a pneumonia. (Especially when it comes to older people with Alzheimer’s, they often don’t voice focused complaints the way younger people do.)
The trouble is, even though delirium is very common in older adults, studies have shown that it’s often missed by doctors and nurses. This is a important problem in healthcare, for three key reasons:
- Delirium is a sign of something being wrong with the body, or the person. Whether it’s a life-threatening infection or just too much sleep-deprivation in the hospital, it’s important to identify and reverse the delirium triggers as quickly as possible.
- People are at risk for injury while delirious. People who are delirious are more likely to fall. They are often restrained in the hospital to keep them from pulling out IVs (although being tied up can cause greater stress and worsen the delirium). Delirium has been linked to longer hospital stays, and worse healthcare outcomes.
- Delirium can cause permanent declines in mental abilities. As I explain in this post, titled “A common problem that speeds Alzheimer’s decline,” studies have found that after delirium, some people never recover all the way back to their previous abilities. Research has also suggested that delirium episodes can speed up cognitive decline overall.
I really believe it’s important to think beyond eating blueberries to slow down brain decline. In my mind, preventing delirium and promptly trying to treat it are actually more likely to protect an older person from harm.
How you can learn to prevent, recognize, and treat delirium
Preventing delirium: Now, it’s not possible to prevent all cases of delirium. But there are things that YOU can do, to reduce the chance of a bad delirium. Try this resource:
- “For Older Adults & Caregivers“, from the Hospital Elder Life Program
Recognizing delirium: To learn to spot delirium in someone with a dementia such as Alzheimers, try these:
What to do about delirium: For more on what to do if you suspect delirum, and to make sure your loved one gets the right work-up:
- FAQ: What Should I Do if I Think My Loved One Is Having Delirium in the Hospital?
- What Doctors Should Evaluate When Someone With Dementia Becomes Delirious
What to expect after delirium: Even when all the right things are done — including getting the person home to a restful familiar environment — it often still takes a while for delirium to get better. In fact, it’s pretty common for it to take weeks, or even months, for delirium to completely resolve in an older adult. (I once had a 90 year-old patient slowly get better over a whole year!) For more info:
If your loved one has had delirium in the past, the most important thing to know is that he or she will be at high risk of developing it in the future. So, be sure to review the resources above on preventing delirium, and on spotting it quickly if it comes up.
You can also visit Caring.com’s Dementia and Delirium Solution Center, which I helped create back in 2011. I hope this information will help you feel more prepared and informed as a family caregiver.
Have you had any experiences with delirium? Please share any stories or questions below in the comments!
Carol Meinecke says
My sister in law was taken to the hospital 2 weeks ago with cellulitis. Because of Covid19, my brother was not allowed to go with her or visit. She has beginning stages of Alzheimer’s. At the time she was able to walk, feed herself, use the bathroom. Her speech was mainly the problem and getting confused. She was transferred after two days to a nursing facility for physical therapy. My brother still couldn’t see her but checked on her every day. Today, two weeks later she can’t walk, can’t feed herself and doesn’t recognize him. She was going to be discharged but couldn’t get up to get in the car. My brother had to leave her. What happened to cause her decline so quickly.
Nicole Didyk, MD says
I’m so sorry to hear this story, and it is not an uncommon one currently. Unfortunately, the bans on visitors and subsequent lack of social interaction in hospitals and rehab units can make conditions like delirium linger and get in the way of rehabilitation efforts. Delirium usually gets better though, so it may be that your sister in law will recover significantly. Only time will tell, and I hope that the restrictions around visiting will end soon. I’m glad you’re here on the site to get more information, like this article.
Joy says
My husband had a partial knee replacement three years ago, immediately after the operation he was fine , doing a crossword with me. However a couple of hours later he was in a lot of pain. As I left the nurse said he would give morphine every hour. Later that evening the hospital rang me at home to say my husband was very bewildered and confused. For the next three days he suffered delirium and didn’t know me at all. On the fourth day the nurse said he was back to normal and was coming home. Over the next few months he was not completely back to normal and after a brain scan was diagnosed with Alzheimer’s. He has stayed stable but I can’t help feeling that the opiates lead to his dementia as I had not noticed any problems before. He is physically fit but nowhere as mentally alert as before his operation, which incidentally was done under a local anaesthetic with an injection in his back. Thank you for your informative blog.
Nicole Didyk, MD says
Hi Joy and thanks for sharing your story. Unfortunately, it is a story that I hear all too often in my practice. You’re probably not wrong that the narcotic medications, along with surgery and anesthesia, were what kicked off his delirium, and it is pretty common for a person with delirium to have ongoing memory problems (or even to be diagnosed with Alzheimer’s or another type of dementia) after the delirium has passed.
This article is a great review of the relationship between delirium and dementia, which we are continuing to work to understand. It does seem that the process of delirium can contribute to permanent brain changes for many individuals.
It’s also possible that your husband had very early Alzheimer’s disease before his operation and that the delirium accelerated his course. I’m glad that his knee is better anyway, as exercise is important for staying well with dementia.
Thanks again for telling your story.
Kathy says
This article and the comments on here have been so enlightening. It has relieved some of my stress and I will know how to prepare in advance for future hospital stays for my mom.
Leslie Kernisan, MD MPH says
Sorry for delayed reply, we had a glitch in our system that we have just resolved.
I’m very glad you found the article helpful. Yes, being prepared can make a difference. You may also want to read our article on making hospitalization safer in aging: How to Make Hospitalization Better & Safer in Aging
Good luck and take care!
Fiona says
My mother in law has had two episodes of delirium due to a UTI and then a fractured shoulder. What concerns me is that her family insist on telling her all the weird, rude and terrifying things she has talked about during the delirium once she is returning to a more normal state,given that she has been diagnosed with early onset dementia.
I do not see that this can be beneficial for her emotional health but the family say she needs to know what she was imagining did not really happen and they always end a tale of her behaviour or imaginings with ‘but it was the illness it wasn’t you’
What would your advice be regarding relatives responses to delirious behaviours and imaginings with the person once they are recovering?
Many thanks, I have just discovered your site and I am finding it to be very informative and helpful
Leslie Kernisan, MD MPH says
Well, it’s not at all clear that it benefits a person to know all the crazy rude things she said while delirious, whereas in many cases doing so can cause the older person distress or anxiety. The more relaxed and emotionally secure an older person feels, the better the brain works. This helps people with early dementia have better brain function, and also probably helps people recover from delirium.
So, my guess is that your instinct is correct for this situation: it probably serves your mother-in-law better to NOT repeatedly bring up any crazy or weird things she did.
On the other hand, many experts DO recommend that families bring up delirium with their loved one at least once. The reason for this is that many older adults are aware that something confusing and frightening happened to them, and they may actually be feeling anxious and worried about it. (For instance, they might worry that it’s a sign that they’re crazy, or getting Alzheimer’s.) So, it IS appropriate to gently bring it up and see if the older person has any questions, fears, or concerns. But the conversation after that should be about allaying those fears, and not necessarily making sure the person knows about every kooky thing she said while delirious.
The best test of what to do is really to do/say more of what seems soothing or reassuring, and avoid doing/saying things that are upsetting or stressful. The main exception to this is that sometimes it’s necessary to bring up a distressing topic, because there’s a chance of achieving something very beneficial in the longer run (e.g. asking the person to address advance planning).
Generally, people with dementia (or delirium) do NOT need to be “grounded in reality.” This and other key principles of caring for someone with dementia are listed in this helpful resource sheet from Family Caregiver Alliance: “Ten Real-Life Strategies for Dementia Caregiving.”
Good luck. It’s often not easy to persuade family when one is an in-law, but it does sound like you’re on the right track.
Melissa Healy says
I wrote to you about my mom in May ’17, & she had just been at Emory hospital for 1 month with pneumonia, the flu, a utility and sepsis. She developed delirium and was diagnosed with vascular dementia, after having been very healthy up until February. You are the only one who said, she could still have delirium and that you thought perhaps with her health being so strong before that she might recover- well, she DID! It was a slow process and from April through July, she most often didn’t know who I was or where we were (we also moved mid June). By the end of July, I noticed improvements and then gradually she became more herself, but in October, she greatly improved and she’s about 95%back to her old self, if not completely herself. She can’t remember anything of the time she was mentally out of it, and truly, I’m thankful because it was a difficult experience. I can’t believe it! I was told pretty much that she would be how she was, which sadly was pretty crazy, but she is so sharp again and talking with everyone, social, just like herself. I wanted to tell you how much I appreciate you’re taking the time to respond to me and for your blog here. I can’t tell you how many times I read your response and it helped me remain hopeful that it was delirium she was experiencing. I tell friends whose parents have been diagnosed with delirium to give their parents time- it took my mom 4 months to really start knowing me again, and another 3 months to really get back to herself and remembering. I don’t understand it, but it seems nothing short of miraculous her recovery. She just turned 87 in September. Thank you so much for your generous help and information- for taking the time and the compassion you show. Xo
Leslie Kernisan, MD MPH says
This is wonderful news, thank you for returning to share this update!
I am sure your mother’s recovery is in no small part a testament to the efforts you made to support her, while she recovered from her delirium.
My advice now is to hope for the best and plan for the quite possible. Let’s hope she continues to do very well for many years to come!
The quite possible to plan for: she is vulnerable and could tip into another bad delirium if she gets sick or is hospitalized again. She’ll probably be prone to developing worse thinking when she’s sick, tired, or stressed.
While she’s well, considering addressing advance planning, if you haven’t already done so. Proceed with caution before agreeing to any surgery or any elective hospitalizations, and choose a hospital that is proactive about delirium prevention if possible.
Well done with this recovery, enjoy!
Sinead says
Hello there,
Your post has given me some hope. My nan turned delirious the second day of being In hospital and we are being told the same thing, Vascular dementia.
We are currently in a fight with the hospital to take her home. 7 weeks in hospital and they are injecting her, restraining her, giving her anti depressants with sedative, anti psychotic etc
Can I ask if this happened in your situation and what you did once you got back home?
Thanks Sinead
Leslie Kernisan, MD MPH says
Sorry but our commenting system doesn’t alert readers when someone has replied to their comment, so I think we are unlikely to hear back from Melissa.
Sorry to hear about your relative. I hope she’s doing better now and that she eventually recovers.
Trayson Evans says
In many cases, education and preparation can make a big difference when caring for someone. It can be really scary being faced with a medical situation like delirium for the first time. You might not know how to react and this can cause problems. Even just something as simple as knowing how to spot the problem and get doctors to act can make a huge difference.
Robin says
Great article! My mom has early stages dementia and was just in the hospital for 5 nights for blood clots. I stayed with her every night and my dad was with her during the day. She got delirium the second day there. she calmed down after the first episode but was really out of it most of the hospital stay. Now she’s back at home and we have lined up home care – nurse visits, PT and OT visits to help build her strength back up. I’ve researched all the info including UTI’s and what to be on the lookout for. Your article was very helpful. She is still mentally very foggy, her voice has gotten weak, but she is improving. When she first came home she couldn’t remember how to put her shirt on or work with her iPad. We’re doing everything to keep her hydrated which is tough (she hates water – I got straws) and keep her moving. The PT and OT should help with this. She’s back on blood thinners, low dose and takes thyroid medication daily. We’re also taking her to get her eyes examined. Is there anything else we can do? I’m hoping she will improve even more but with the dementia not sure.
Leslie Kernisan, MD MPH says
I’m glad you found the article helpful. For more information and suggestions on what to do, see my more recent article 10 Things to Know About Delirium.
Briefly, to recover from delirium an older person needs to be protected from physical, mental, and emotional stresses. (Note that medication side-effects can stress the brain and slow/prevent recovery.) And then they need TIME to recover. This can take weeks or even months; I once had a patient who slowly improved over a whole year. People with dementia tend to take longer to recover. For them, routine and an emotionally reassuring environment is especially important.
Here’s hoping your mom continues her recovery!
Jane says
It is important that we do what we can to ensure that patients with alzheimers are protected.
Virginia Quinteros says
Very good information, could delirium be that the person thinks other person is her husband?
Leslie Kernisan, MD MPH says
Possibly. What is most important, to identify delirium, is that the person has become mentally worse than usual (over hours to days), and also that the person is having difficulty paying attention. Delirium also tends to wax and wane over a day, so sometimes the person will seem very normal and at other times they will be more confused or spaced out.
I have a lot more details in a newer article: “10 Things to Know About Delirium,” which covers how delirium is diagnosed and much more.
David Hawkins says
That’s good to know that delirium is a sign of something more serious coming. My grandmother is in the early stages of Alzheimer’s disease and we’re trying to get her to the doctors as often as possible. I’ll have to pass this info along to the family so that they can be prepared for what might be coming. Thanks for the detailed info.
Leslie Kernisan, MD MPH says
You should definitely get medical attention if she seems to be delirious (much more confused than usual).
Otherwise, going to the doctor often may or may not be helpful; it really depends on the doctor and good that person is at optimizing the health and wellbeing of a person with early Alzheimer’s. For more on how to do that, see our articles on better healthcare for people with Alzheimer’s; you can find them on the Dementia & Alzheimer’s topic page.