Delirium (or “sudden-onset confusion”) has it’s own unique features, and it affects people in different ways. It is one of those conditions that doesn’t have a specific laboratory test, and takes at least 24-hours of observation to detect.
I have interviewed three women (Mary, Donna and Emma) and I will share their stories of delirium and their older family members. I hope it will help you if you or a loved one happens to be in a similar situation (I have changed all the names to protect privacy).
Delirium is often unrecognized and often misdiagnosed as depression or dementia.
Delirium is a common, serious and frightening brain disorder. It is also reversible in most situations. It can also be life threatening. I have seen how delirium affects people. I remember assessing a woman in a nursing home who was about 80 years old, “picking” at the air. It struck me how inattentive she was. Another man, about 90, was walking around in his apartment complex, oblivious to me as I was trying to get his attention.
Delirium is a medical emergency and requires immediate medical attention.
Delirium is a confused mental state that causes problems with thinking and speaking. A hallmark of the condition is “inattentiveness” with a fluctuating course. The cause of delirium can usually be determined (not always), and it is often medication side effects, infection or some other medical illness that causes a disruption in normal thinking patterns. It usually comes on quite suddenly. It often leaves suddenly as well. In some older people it is harder to detect, especially if the person already has an underlying cognitive impairment such as Alzheimer’s or another related dementia.
Delirium often comes on suddenly. Sudden changes in behaviour or mental functioning requires medical attention.
Some health care professionals also find it difficult to determine if the person is having a sudden-onset of mental problems because of dementia or a medical problem such as a stroke (like in Emma’s story, below). Sometimes it takes a bit of guesswork because there isn’t a “delirium blood test” that can be taken to determine if the person is experiencing delirium.
Health care professionals can be helpful, as in Mary’s story, or unhelpful as in Emma’s story. Delirium can come at the end of life, as you will learn in Donna’s story.
There are three subtypes of delirium: Hyperactive (restlessness, agitation, hallucinations), Hypoactive (drowsy, quiet, confused), and Mixed (both hyperactive and hypoactive).
“The Confusion Assessment Method (CAM) is a quick way to determine if the person in question may or may not be experiencing delirium:
Ask these questions, and answer to the best of your ability (scoring information below):
1. Acute (comes on quickly) change in mental status and fluctuating (tends to come and go) course:
a) Has there been a sudden change in the person’s thinking and usual behaviour?
b) Does the unusual behaviour fluctuate or change during the day? (i.e. tends to come and go, or increase and decrease in severity, periods of clarity mixed with confused episodes)
2. Inattention: Does the person have difficulty focusing attention or become easily distracted? (i.e. has difficulty keeping track of what is being said, can’t concentrate)
3. Disorganized thinking: Is the person’s thinking disorganized or incoherent (doesn’t make sense)? (i.e. rambling speech or irrelevant/unrelated conversation, unclear or illogical (nonsensical) flow of ideas, or unpredictable switching of subjects)
4. Altered level of consciousness: Is the person appearing as anything besides normal alertness? (i.e. vigilant/careful/watchful or hyper alert; lethargic/lazy/sluggish or drowsy but easily aroused, stuporous/lazy or difficult to arouse/awaken/excite, comatose/unconscious or unable to arouse).
Scoring: The diagnosis of delirium requires the presence of features 1 and 2 and either 3 or 4.
Mary’s Story – When Delirium is Diagnosed in Hospital
Mary’s mom and dad are up in years. Her mom is 87 and her dad is 97. Dad is a very healthy and active senior who still participates in many social activities, including driving. Mom has mild-to-moderate dementia. Dad is her primary support, while Mary and her sisters help with caregiving tasks.
One night, Mary stayed with her mom because her mom was experiencing pain due to compression fractures in her back (she also has osteoporosis). Her mom, who is a petite lady (112 lbs.), was taking one Tylenol #3 every four hours. In the night, her mom was unable to follow commands to walk with Mary’s assistance to the commode. She noticed her mom had a “blank look” on her face. Her mom was scared. Things didn’t seem right to Mary. She decided to call 911. The paramedics assessed her and Mom was transferred to the hospital via ambulance.
Delirium often occurs in people with other conditions such as dementia or depression. It is often difficult for health care providers to determine the reason for the changes in behaviour or mental functioning.
While in hospital, pain control was a main issue, so they gave her Percocet and Hydromorphone. These are strong painkillers, both in the opioid class of medications, also referred to as narcotics. Mary explained her mom’s behaviour:
- Soon after, her mom was shrieking, her eyes looked “wild”, she was paranoid – but couldn’t really say what she was afraid of.
- Her hearing was super-sensitive (hyper alert), although she had a hearing impairment.
- She was hallucinating and saw a waterfall coming from the ceiling.
- Her paranoia escalated and she asked her family members if they were afraid too.
- Her hallucinations continued and she started picking at imaginary things in the air.
- She took off her gown and her adult brief.
- She had periods of lucidity (thinking clearly).
This went on for three weeks.
Mary says it is very hard, emotionally, for her and her sisters to see her mother, who is such a modest person, act in a way that is so out of character. She said she sees occasional glimpses of her mother, then she “disappears.” Her mom knows there is something wrong, but she can’t figure out what it is.
I asked Mary what the medical professionals told her about what was going on with her mom. Mary said it took a couple of days before she could convince them that this was not her mom’s typical behaviour. This was not how her mom usually acts, and it was different from her mom’s dementia-related behaviour. She says the hospital staff were very good, and explained that her mom was experiencing a delirium. They were also suspecting she may have had a small stroke.
Delirium can last days, weeks or months.
I asked Mary what advice she has to give others who are going through a similar experience. She told me she wishes she had advice. She is still trying to figure it out. She goes to see her mom, and they try to be there with her. Sometimes she’s mad at them. Sometimes she cries. Sometimes she fixates on things. She can be good in the morning, then confused in the afternoon. The hospital floor she is on has people that are calling out, screaming, walking the hallways and are agitated. This is not helping matters.
Mary says she advises family members to ask the health care team questions. How long will she be like this? What happens if mom doesn’t improve, then what? Unfortunately, they may not have all the answers either.
Sometimes the cause of delirium is never determined.
Mary said her dad has been very quiet throughout all of this. He visits as often as he can, and talks to her on the phone. He worries about her, but doesn’t talk about it to Mary and her sister.
Mary’s advice is, if your loved one has delirium, educate yourself on the subject. Read books, do some research and talk to the professionals. She says we “figure it out day-by-day, hour-by-hour.”
Both Mary and her sister Wendy say it’s so important to be an advocate for your loved one. She says it’s okay to ask the doctors and nurses what is being planned, or what medications will be given to your loved one. She says numerous people have told her such as her doctor, nurses and friends that she needs to look after herself, too. She says it’s hard. “It’s hard to find time for myself. Sometimes I wake up in the morning and I ‘hit the wall.’ There are some days where I just cry and sleep because I feel so overwhelmed.”
Both Mary and Wendy wonder why the emergency doctors don’t have more insight in terms of the best practices when working with the elderly, especially in terms of medications. They feel geriatric specialists should be consulted more and the emergency doctors may require more training in this area.
A few weeks later Mary is relieved as her mom’s condition is improving. She was transferred to a geriatric rehabilitation ward where she is receiving excellent care. She states her mom’s memory is perhaps a little worse than it was before her hospitalization. She is still a little delirious, and they think she may have had another stroke. But overall, “She is much more like our mom, and that is great.”
Emma’s Story – When Delirium is Not Diagnosed
Oftentimes even health care professionals don’t recognize delirium. Sometimes they don’t listen to family members as well as they should, either. In Emma’s case, her mother Nellie went to a long-term care facility due to complications from a stroke she experienced when she was 78. Her condition resulted in frequent trips to the hospital. Emma looked after her mom for over a year before she went into a long-term care facility.
Emma had negative experiences with both the long-term care facility and the hospital regarding how they handled her mom’s sudden-onset confusion while ignoring the concerns from family. Emma suspects many of the difficulties her mom was experiencing were related to delirium, although a doctor never diagnosed it.
“Hospital visits were painful, difficult, frustrating and sometimes harrowing experiences.” – Emma
Emma accompanied her mom to the hospital on all occasions. Emma states her mom was “handled poorly once delirium began.” She explained the doctor or nurse would often assume her mom had “full-blown dementia” and they would “no longer consult” with either Emma or her mom regarding reasons for the visit. Doctors seemed to be indifferent for the cause of her mom’s sudden confusion and determined it was dementia-related behaviour. There was never a diagnosis of delirium given to Emma, her mom or other family members.
The delirium-related symptoms that Emma’s mom had while in hospital were:
- Struggling to get out of the stretcher repeatedly/constantly
- Seeming to have no idea where she was or why she was there
- Attempting to get people to help her “escape”; i.e. she would say, “Let’s say we’re going to the washroom and we can leave.”
- Crying and sobbing; high emotional distress
- Indications of increased pain
Emma also mentioned what she believes to be misdiagnoses her mother was given. Her mom never had a psychiatric diagnosis in her 80 years. She was surprised to find out that her mother, now in her 80’s, had been diagnosed with schizophrenia and another time she was diagnosed with bipolar disorder by the doctor at the long-term care home.
“Be alert to sudden changes in behaviour triggered by new medication or change in environment or emotional distress and keep a diary to track patterns and common themes related to the changes.” – Emma
A social worker by training, Emma did her research and read up on drug interactions and the impact they could have on her mom’s mental health. She began looking at the causes of sudden-onset behaviour changes and discovered delirium as a possible explanation.
Emma suspects it was some of the psychotropic or mind-altering drugs that were the cause of her mother’s delirious episodes. Medications that were in the antidepressant, benzodiazepine/anxiolytic, antipsychotic and hypnotic categories were all used both effectively and ineffectively in her mom’s case. Her mom found one of the anxiolytic and hypnotics helpful, but not harmful, in the end. It’s also important to note that some pain medications such as morphine and oxycodone (also called narcotics) can also cause delirium (as in Mary’s story, above).
Emma states throughout these experiences it’s difficult for her to put her feelings into words, but the experiences stay with her. “I felt helpless, useless, ineffective, frustrated, maybe even a bit hopeless about our system of care.” The other family members felt overwhelmed and torn in terms of what the doctors were saying and how they directed care. The family members found it difficult to vocalize their legitimate concerns. Ultimately, the family did not want to “make a fuss” and felt confused, distressed and frustrated.
“If you ever find yourself in a similar situation, to seek out a professional who specializes in studying, treating and diagnosing delirium.” – Emma
Emma advises if you have a loved one in a facility, or are considering a move to one, it is “critically important to know the possible side effects and adverse events related to psychiatric drugs; and to know the rate and use of psychiatric medications” in long-term care centres or residential care facilities.
Professionals such as geriatricians (doctors who work with adults aged 65 and older) and geriatric psychiatrists are two types of specialists who can be consulted to help sort out behavioural and mental health problems in older adults. Geriatric Mental Health Clinicians, or those who specialize in psychogeriatrics are also helpful in these situations.
Donna’s Story – Delirium at the End of Life
Delirium is common at the end of life. Donna had experience with knowing three people who became delirious. She said the behaviours were consistent in all three of them: “Extreme agitation, taking sheets and clothes off, in and out of bed and expressing the need to go home.”
Donna lost her dad a few years ago. Near the end of his life, he experienced delirium. The symptoms he experienced were heightened restlessness and agitation, pulling at his sheets and clothing, and constantly trying to get out of bed to “go home.” Sometimes he spoke incoherently and often he believed he was in a different time in his life. He was a firefighter and also used to sell cars.
Donna explains, “One morning he asked me if that guy had come to pick up his keys for his new car. When I told him he had, he settled down. Another day he was fighting fires and that is how it went. Sometimes we could not understand what he wanted if his speech was not clear and had to do our best to figure it out.”
The following is Donna’s advice to others going through this experience:
“I would say to just go with what is happening depending on the circumstances and do not make the person feel bad for whatever they say. If they are in the past, you need to be in the past, this is not a time to create more anxiety for the person. Also, recognize that even though they are delirious, they are still often aware of what is happening around them.
One time we thought my dad was not really with it and an old song came on the radio. We were all trying to figure out who sang it and he suddenly blurted out ‘Patsy Cline.’ This type of thing happened often and showed me how aware a person experiencing this still is.
Even when he seemed to be in a deep sleep or delirious, if my mom would take her hand away, his hand would begin to move around looking for her. We saw many signs that dad was still there even when in and out of delirium or coma. It is so important to be there for them and continue to do the things that make them comfortable.
This is not a journey we wanted or that anyone wants, but none of us would have missed taking it with dad for anything. We experienced great sadness, moments of joy, tears and laughter. I would tell anyone to allow themselves to fully engage in the process and do not be afraid to laugh – it is not inappropriate and not an insult to your loved one.”
What I Have Learned About Delirium
Delirium can last for days, weeks or months. It can recur in people who have had delirium in the past. Medications, illnesses (such as a urinary tract infection), dehydration, or sleep deprivation are some of the risk factors. When delirium is superimposed onto a dementia, it can also be difficult to sort out what is causing the confusion.
Evenings can be more difficult for a person with delirium. They may be more afraid or agitated for example (also called Sundowning or late-day confusion). Being with familiar people and objects can help, but it won’t make the symptoms go away. This can be very hard on family members.
When a person has delirium, it is very important to try and determine and remove what caused the delirium in the first place. This is not always possible. The delirium can clear just as quickly as it came, without any notice. It is not contagious, but I see it like a “little intruder” that invades the brain for a bit, causing all kinds of problems. Once the intruder is eliminated, or “burns out,” then things get back to normal. Sometimes there is a bit of a step-wise decline and there is a bit of a change in the person’s new normal, or baseline functioning. The person plateaus in terms of his or her thinking and functioning, but at a slightly lower level. Sometimes s/he gets right back to where s/he was to begin with.
A delirious person needs to be kept comfortable, safe, hydrated and fed. They need to get up and walk around and socialize. They need to sleep. Their sleep patterns may be disrupted, so they will need daylight and activity during the day to help keep them stimulated (as tolerated). They will need lots of tender loving care and close supervision.
Unfortunately, delirium can increase the risk for developing dementia. Therefore, it is important to diagnose and treat as soon as possible. Delirium can also increase the risk for death.
Delirium prevention in older adults includes keeping on top of risk factors that may trigger an episode. Medication side effects, withdrawal, surgery and illness are all factors that can lead to delirium. The symptoms of delirium can be lessened by removing the cause, supporting good sleep and nutrition habits, helping the person remain calm and orientated, and helping prevent medical problems or complications. For older people who need to go to the hospital, this brochure on Delirium that may help.
A special thank you to the three women who shared their stories here in hopes of helping others.