Sleep. Everybody needs it. Many of us don’t get enough of it.

These are common truths that almost everyone knows. But a few years ago, I had the opportunity to learn quite a bit more about sleep, and how it affects health.

I came away convinced that sleep is a core pillar of health. It deserves more attention from us as doctors, and as individuals concerned about our own health or that of an aging relative.

I also know that sleep problems are very common among family caregivers, and among aging adults. So I was glad to learn more about sleep health, as this has the potential to really help people get through caregiving and aging challenges.

In this article, I’ll share some of the interesting facts I learned about sleep, including how it affects the health of the body and mind, and how it changes with aging.

You may also want to read my related articles:

• 5 Top Causes of Sleep Problems in Aging, & Proven Ways to Treat Insomnia
• How to Manage Sleep Problems in Dementia

4 Things To Know About Sleep & Health

1. You may need more sleep than you’re currently getting. 

This is a no-brainer if you’re struggling with insomnia, or walking around haggard because you’re caring for an older person with sleep problems.

But even people who don’t feel chronically sleep-deprived are often getting less sleep than they need. This can have important health effects both short-term and long-term.

So how much sleep does a person need? Here’s how to answer this question. First, you can reference this table from the National Sleep Foundation. It shows the range of nightly sleep time that people need, depending on age group. For adults, most people need 7-9 hours every night, with older adults needing a little less.

That range is just a starting point, however. To determine how much sleep you or another person needs, you really need to figure out how much sleep is required for the person to feel refreshed upon awakening, and alert throughout most of the day.

According to experts, a lull in alertness after lunch is common, but it’s not normal to feel very sleepy during boring activities such as meetings or highway driving. If you are getting a healthy amount of sleep, you should feel fairly alert throughout most of the day and evening, without having to resort to frequent cups of coffee or use of other stimulants.

Note that the sleep needs to be of “good quality.” Factors such as sleep apnea (which causes frequent micro-awakenings), restless leg syndrome, or even certain medications can diminish sleep quality, which means a person can sleep for the “right” number of hours but still feel tired during the day.

Alcohol is another common cause of poor sleep quality. Although it does often make people feel sleepy, it interferes with getting enough restorative sleep throughout the whole night, and sometimes causes people to wake up during the night.

2. Being sleep-deprived is common…and you may not realize it’s affecting you.

Sleep deprivation comes in two flavors. Acute sleep deprivation means getting less sleep than usual over a night or two. This leads to people feeling noticeably worse than usual during the day. They also perform worse on cognitive tasks.

Chronic sleep deprivation, on the other hand, means not getting quite enough sleep for weeks, months, or even years. A large survey done in 2010 found that 30% of adults aged 45+ reported sleeping six hours or less on most nights.

Studies suggest that most people develop a certain tolerance to chronic sleep deprivation, so they don’t feel nearly as bad as after an episode of acute sleep deprivation. However, a landmark study published in 2003, in which young-ish adults (aged 21-38) were randomized to get 4, 6, or 8 hours of sleep for 14 days in a row, found that chronic sleep deprivation did affect performance much more than participants seemed to realize. (The study overall found that cognitive abilities got progressively worse for those getting 4 or 6 hours per night.)

In other words, when people experience acute sleep deprivation, their sense of feeling crummy and tired is aligned with the actual impact of not sleeping enough. But when people are chronically sleep deprived, they tend to underestimate how much it’s affecting them.

3. Acute sleep deprivation affects people in many ways.

Acute sleep deprivation is when you pull an all-nighter, or otherwise sleep a lot less than you usually do. Here’s what research reveals about the effect of a low-sleep night:

• Decreased cognitive performance. This includes having a harder time paying attention, multi-tasking, completing logical thinking tasks, or problem-solving.
•  Worsening of mood. People tend to be more irritable, more anxious, and sometimes more depressed. The symptoms can mimic depression or anxiety.
• Daytime sleepiness. Not only do people feel sleepy, but this can also cause people to actually fall asleep for a few seconds if they are driving, sitting in a meeting, or otherwise doing something monotonous or not physically active. Obviously, this can be quite dangerous and is a major contributor to car accidents.
• Fatigue. Fatigue means feeling a certain lack of physical or mental energy. This differs from sleepiness, which is the actual feeling of wanting to fall asleep, or having difficulty staying awake. (Many insomniacs feel fatigued but not sleepy, to their great dismay.)

Interestingly, how badly you are affected the day after not sleeping enough seems to depend not only on how little you slept, but also on how chronically sleep-deprived or well-slept you were before your bad night.

As you might guess, if you are chronically sleep-deprived then you’ll be even worse off after a particularly low-sleep night.

4. Chronic sleep deprivation is associated with long-term health effects.

Chronic sleep deprivation reduces your alertness and mental performance. It’s also been linked to a number of health and life problems, including:

• Anxiety and/or depression. A study found that frequent insufficient sleep was linked to a much higher likelihood of having anxiety, depression, or both.
• Developing cardiovascular disease. A study that followed 495 healthy people and measured their sleep with a wrist device found that those who slept more were much less likely to develop significant calcification of their coronary arteries. Another study of 20,000 adults found that those who slept less than 7 hours per night — and often woke feeling unrested — had a higher risk of cardiovascular disease.
• Increased inflammatory markers in the body. Studies have found that reduced sleep leads to elevated blood markers related to inflammation. Experts believe this could explain the relationship between chronic sleep deprivation and cardiovascular disease.
• Weaker function of the immune system. Sleep deprivation has been linked to decreased production of antibodies. One especially interesting study found that people who slept less were almost three times more likely to develop a cold. (Study participants were inoculated with rhinovirus after their sleep was tracked; overall 43% developed a symptomatic cold, which is interesting in terms of understanding how likely you are to get sick after being exposed to this type of cold virus.)
• Increased risk of obesity. A 2008 meta-analysis (a study of research studies) found that being a short-sleeper is associated with obesity. A study of acute sleep deprivation in young men found that not sleeping enough changed hormones associated with appetite.

3 Ways Sleep Changes With Aging

It’s not uncommon for older adults to develop a physical health problem that affects sleep; common  ones include sleep apnea, gastroesophageal reflux disease, heart failure, untreated pain, and frequent urination. (I will cover a comprehensive list of such problems in a future post.)

But even in the absence of a health problem, aging changes sleep. Here’s what experts have found out so far:

• Total sleep time decreases as we age. One study concluded that it decreases by 30 minutes per decade, starting in mid-life.
• Sleep becomes lighter and more fragmented. The amount of time spent in REM sleep declines, and “sleep architecture” otherwise changes a bit as people age.
• The body’s inner circadian rhythm changes.  The circadian rhythm is basically a daily pattern that affects most processes within the body. It’s regulated by certain parts of the brain, by certain hormones (including melatonin), and by exposure to daylight. As people age, many seem to advance the “phase” of their circadian rhythm, meaning they get sleepy earlier in the day and wake up earlier. Experts also believe the rhythm signal tends to weaken with age, so there’s less of a clear signal organizing the body’s processes to be in synch with each other and with the day.

In short, it’s normal for one to sleep a little less, and less deeply, as one ages.

It’s also normal to shift to an earlier schedule, and become more of lark than a night-owl.

That said, experts believe that most sleep problems reported by older adults are related to a physical health problem, a mental health problem (which can include chronic insomnia, as well as other problems related to mood or the brain), or a medication effect.

So if an older adult complains of poor sleep, never assume it’s just “getting old.” Instead, it’s important to investigate further, as it’s often possible to improve an older person’s sleep once we identify the underlying problems.

What To Do If You’re Worried About Sleep

As I explain above, it’s pretty common to not get enough sleep, and it can really affect a person’s health and quality of life.

If you’re worried about sleep, be sure to read my related article: 5 Top Causes of Sleep Problems in Aging, & Proven Ways to Treat Insomnia.

In the meantime, if you often feel tired, sleepy, or irritable, I’d encourage you to assess your own sleep habits, and check to see if you might be chronically sleep-deprived.

Today, smartwatches or a wearable tracker can make it easy for you to log your sleep for a few weeks. Try combining those with a journal of how rested you feel in the mornings, and how often you feel sleepy during the day.

That should help you determine whether you’re chronically sleep deprived.

Questions or comments? I’d love to know how you feel about sleep in later life.

Have you ever had questions about what might be going on with an older loved one’s health? But then you find that your older relative is unable — or unwilling — to let you in on the health details?

Or maybe you’ve wanted to talk to your parent’s doctor, but worried that doing so might be a HIPAA violation?

Such issues come up often for the family caregivers of aging adults. Common situations include:

• An older parent who starts to act in ways that are strange or worrisome, such as becoming paranoid or delusional.
• An older adult who seems to be physically or mentally declining, but seems reluctant to discuss the situation
• A hospitalization or emergency room visit
• A hospitalized older person becoming confused (this would be delirium) and becoming no longer able to explain to family what the doctors have said

In these situations, family caregivers often find themselves grappling with issues related to the HIPAA (Health Insurance Portability and Accountability Act) Privacy Rule.

Why all the grappling?

Well, although most people — and all clinicians — have heard of HIPAA, its rules and requirements are often misunderstood. So for instance, families may assume that it’s a HIPAA violation to report a relative’s worrisome behavior to the doctor, because their relative hasn’t given them permission to do so.

Even worse:  doctors and other clinicians sometimes refuse to disclose any information to families, and will incorrectly claim that it’s a HIPAA violation to do so. This can create extra confusion and stress for families, or can even sometimes put an older person at risk for harm.

If you’ve been concerned about an aging parent’s health, or are otherwise helping someone with their health concerns, then it can be very helpful to understand HIPAA better. HIPAA regulations will also govern your access to medical records and other important health information.

In fact, the American Bar Association includes “Know your rights of access to health information” among its Ten Legal Tips for Caregivers.

The detailed ins and outs of HIPAA can indeed be hard to fully understand. But, it’s not too hard to learn some practical basics, especially since the US Department of Health and Human Services (HHS) provides a Summary of the Privacy Rule here, and maintains a truly useful set of online FAQs about HIPAA here.

In this article, I’ll explain five useful key basics to help you understand HIPAA better, especially when it comes to getting information and medical records as a family caregiver.

I’ll also address five questions I’ve often heard family caregivers ask about HIPAA.

At the end, I’ll share some of my favorite online HIPAA resources, as well as some final tips to keep in mind.

5 Key Basics About HIPAA

1. What is HIPAA?

The Health Insurance Portability and Accountability Act (HIPAA) is a federal law passed in 1996. Among other things, HIPAA required the Department of Health and Human Services (HHS) to create a federal “Privacy Rule” for health providers and health plans, governing how these entities must protect the privacy of an individual’s medical information.

Usually, when people refer to HIPAA, they are actually referring to the HIPAA Privacy Rule created by HHS.

The HIPAA Privacy Rule basically says that “covered entities” must take certain steps to keep a person’s health information confidential and secure.

“Covered entities” means health providers, health insurers, and many other professionals whose daily work involves the handling of individuals’ medical information.

Private citizens and family caregivers are not “covered” by the Privacy Rule. This means that you do not have to maintain your — or your older parent’s — health information confidential in the same way that health providers do.

Exactly how “covered entities” should comply with the Privacy Rule can get pretty complicated to explain. What is most important for you to know is that this often — but not always — means taking steps to make sure that patients are in agreement, before their health information is shared with other people.

Overall, HIPAA is intended to balance a person’s right to privacy with the need for health providers to share medical records and otherwise communicate with others, in order to properly care for a patient and act in the patient’s best interest.

To read about the rule in more technical detail, see here: Summary of the HIPAA Privacy Rule.

To read a good plain-English summary of your rights (as an individual) under HIPAA, see here: Your Rights Under HIPAA.

2. What information is protected by HIPAA?

HIPAA’s Privacy Rule protects all “individually identifiable health information” held or transmitted by a covered entity, no matter what form it is in. So HIPAA applies whether a person’s health information is held or disclosed electronically, orally, or in written form.

A person’s health information is often referred to as “protected health information” (PHI). This covers information that relates to:

• a person’s past, present or future physical or mental health or conditions
• any health care provided to a person (e.g. clinical notes or lab results related to a person’s medical care)
• past, present, or future payments related to a person’s health care (e.g. billing records)

In other words, this is information created by, or stored by, healthcare providers and insurers, such as medical records.

HIPAA also covers demographic data and any information that can be used to identify a person, such as names and addresses.

If you are a family caregiver, remember that you are not a “covered entity.” Hence you aren’t responsible for protecting health information in the same way that your relative’s doctor is.

3. What to know about HIPAA’s rules on the disclosing of protected health information without committing a HIPAA violation

You’ll be able to sort out what is and isn’t a HIPAA violation more easily if you understand a few fundamentals about HIPAA’s rules on these issues.

According to the HHS Summary of the HIPAA Privacy Rule: “A covered entity may not use or disclose protected health information, except either:

(1) as the Privacy Rule permits or requires; or
(2) as the individual who is the subject of the information (or the individual’s personal representative) authorizes in writing.”

In other words, doctors are allowed to disclose health information if a person authorizes it in writing, or if the Privacy rule otherwise permits or requires such disclosure.

Now, let’s address the difference between being required and being permitted to disclose, because that is really at the heart of a lot of HIPAA confusion.

The difference is that when doctors are required to disclose, then they have to do it, whether or not they want to.

Whereas when they are permitted to disclose, they are allowed to do it, but they don’t have to. (Which means, they might refuse to do it, and they are legally allowed to do so, unless other federal, state, or local laws apply.)

You now probably will want to know: under what circumstances are health providers required or permitted to disclose health information?

Required disclosures of health information. Health providers must disclose protected health information in these two situations:

• When individuals — or their personal representatives — request access to their protected health information. Individuals can also request an accounting of disclosures, which means the covered entity has to tell a person with whom the information was shared.
• When the Department of Health and Human Services requests information, as part of a compliance audit or enforcement investigation.

In short: if you request it, your doctors must give you copies of your medical records. This is known as the “Right of Access.” You can learn more about your rights to view or obtain copies of your health information here: Individuals’ Right under HIPAA to Access their Health Information.

And if you are the durable power of attorney for healthcare for your relative, and if you are currently authorized to act, you have the right to request and obtain your relative’s health information.

Permitted disclosures of health information. Under certain circumstances, health providers are allowed — but not required — to disclose information, without obtaining the patient’s written permission.

Now here’s where things start getting trickier, because the list of permitted circumstances is much longer and more complicated than the list of required disclosures.

If you want to learn about all the permitted disclosures and uses, you can do so by reading the HHS Summary of the Privacy Rule.

But I think it’s more useful to learn from the FAQs that HHS has published online, especially the ones created to guide doctors and other healthcare professionals. I will share some of the more useful ones in the next section, when I address FAQs based on the questions I’ve had people ask me.

For now, the main thing you should know is this: in many cases, health providers are allowed, but not required, to disclose health information to others, even if a patient doesn’t give written or verbal permission for this.

As you will see below, when we go through some FAQs, doctors are allowed to use their clinical judgment and disclose information when a patient lacks capacity to give consent, if the clinician decides that the disclosure is in the best interest of the patient.

4. What to know about HIPAA’s “minimum necessary” requirement

The HIPAA Privacy Rule describes a principle of “minimum necessary” use and disclosure:

“A covered entity must make reasonable efforts to use, disclose, and request only the minimum amount of protected health information needed to accomplish the intended purpose of the use, disclosure, or request.”

Basically, this means that when health providers disclose health information to someone other than the patient, they can’t just disclose anything and everything about their patient’s health. Instead, they should only share on a “need to know” basis, and focus on what’s relevant and necessary.

Note that the minimum necessary requirement does not apply to all disclosures. The Privacy Rule summary lists six situations as exempt, including “disclosure to or a request by a health care provider for treatment.”

In short, if your doctor refers you to another doctor, she can send your whole medical chart along. But, if a doctor is speaking to your family while you are sick in the hospital, the doctor is only allowed to disclose what is necessary and relevant to your current hospitalization and care needs.

5. What is a “HIPAA release”?

Many health providers and other covered entities will require a person to sign a written authorization, before they disclose protected health information. This is sometimes called a HIPAA release, a HIPAA waiver, or a release of information authorization.

Interestingly, the HIPAA Privacy rule itself does not require health providers to do this. Instead, per the Summary:

“Obtaining ‘consent’ (written permission from individuals to use and disclose their protected health information for treatment, payment, and health care operations) is optional under the Privacy Rule for all covered entities. The content of a consent form, and the process for obtaining consent, are at the discretion of the covered entity electing to seek consent.”

In other words, although it’s extremely common for health providers to ask patients to sign written authorizations before disclosing health information, such written consent is not actually required by HIPAA.

Instead, a requirement for written consent usually reflects a clinic’s policies, or perhaps the preference of an individual clinician. Understandably, clinicians want to avoid HIPAA violations or otherwise being accused of failing to protect a patient’s confidentiality.

5 Caregiver FAQs about HIPAA and avoiding HIPAA violations

1. Is written permission always required by HIPAA, for a doctor to be able to talk to me about my older parent’s health?

Nope! As noted above, for permitted disclosures of health information, HIPAA does not require that a patient give written permission.

Instead, clinicians are allowed to use a patient’s verbal consent.

HIPAA also says it’s ok for clinicians to give patients an opportunity to object and to proceed if they don’t object, or even to “reasonably infer, based on professional judgment, that the patient does not object.”

Personally, I have often spoken to a patient’s adult children on the phone, because the patient told me it was okay to do so. However, I usually document in my clinical note that the patient said it was fine to talk to his or her children.

Last but not least, if a patient is not present or if it’s “impracticable because of emergency circumstances or the patient’s incapacity for the covered entity to ask the patient about discussing her care or payment with a family member or other person,” HIPAA says that clinicians can disclose information if they determine that doing so is in the best interest of the patient.

In short, HIPAA allows health providers to have a lot of leeway, when it comes to disclosing medical information to family and others. However, those disclosures will usually have to comply with the “minimum necessary” rule.

Most state laws are similar to HIPAA, but in some states, requirements may be more stringent.

You can find more details through these FAQs:

If I do not object, can my health care provider share or discuss my health information with my family, friends, or others involved in my care or payment for my care?

If I am unconscious or not around, can my health care provider still share or discuss my health information with my family, friends, or others involved in my care or payment for my care?

Does the HIPAA Privacy Rule permit a doctor to discuss a patient’s health status, treatment, or payment arrangements with the patient’s family and friends?

Do I have to give my health care provider written permission to share or discuss my health information with my family members, friends, or others involved in my care or payment for my care?

If the patient is present and has the capacity to make health care decisions, when does HIPAA allow a health care provider to discuss the patient’s health information with the patient’s family, friends, or others involved in the patient’s care or payment for care?

2. Can doctors talk to me about my older parent’s health during an emergency?

Yes, HIPAA allows this type of disclosure. So doctors are permitted to update you about your parent’s health during an emergency.

Furthermore, HIPAA does not require providers to ask family caregivers for proof of identity, before disclosing information.

That said, just because doctors are permitted to disclose information to you doesn’t mean they have to do it. As this FAQ notes, “a health care provider is not required by HIPAA to share a patient’s information when the patient is not present or is incapacitated, and can choose to wait until the patient has an opportunity to agree to the disclosure.”

For more information:

Does the HIPAA Privacy Rule permit a doctor to discuss a patient’s health status, treatment, or payment arrangements with the patient’s family and friends?

If the patient is not present or is incapacitated, may a health care provider still share the patient’s health information with family, friends, or others involved in the patient’s care or payment for care?

If my family or friends call my health care provider to ask about my condition, will they have to give my provider proof of who they are?

3. My older parent doesn’t want his doctor to talk to me. What can I do?

This question tends to come up when a family has become concerned about an older person’s mental and/or physical decline. Some older adults will resist their family’s desire to communicate with the doctor. So what can be done?

First of all, as a family member, remember that you are not a “covered entity.” So whether or not a doctor is permitted to disclose information to you, HIPAA does not prevent you from contacting your parent’s doctor and relaying any concerns or information you have.

You can even ask questions; the doctor probably won’t answer them, but it’s good for your parent’s doctor to know what kind of questions your family has.

Otherwise, if your parent has specifically told his doctor to not talk to you, then there are a couple of angles you can consider:

• Consider the possibility of incapacity. HIPAA does permit doctors to disclose information to family when a patient is incapacitated or otherwise unable to consent to the disclosure.
  • If you think your parent might be incapacitated by cognitive decline, delirium, or another medical problem, ask the doctor to consider this.
  • You can start by voicing concerns in a phone call, but it’s best to eventually put them in writing, because your letter will normally end up scanned into your parent’s medical chart. Be sure to include information on concerning behaviors of incidents that you have observed (such as any of these: 8 Behaviors to Take Note of if You Think Someone Might Have Alzheimer’s).
  • You can learn more about incapacity here: Incompetence & Losing Capacity: Answers to 7 FAQs
• Has anyone been designated as durable power of attorney for healthcare? HIPAA allows a patient’s representative to request medical records and health information.
  • Check any durable power of attorney documentation to see under what circumstances the agent has authority to act. Most documents require the older person to be incapacitated, but some allow the agent to act right away.

Of course, even if you are legally permitted to seek information about your parent’s health, your parent is likely to be angry about your doing so. The decision to override an older person’s decision or preferences is a serious one, and should only be considered under special circumstances.

If you have good reason to believe your parent’s insight and judgment are impaired, then it may be ethically reasonable to override their preference for privacy and take actions that will help them achieve their health and safety goals. Just be sure to think through the benefits and risks of your available options carefully, before you proceed.

Of course, what is better is that older adults plan ahead and tell their children what they should do if their older parent ever seems to be ill or mentally impaired, and refuses assistance. But as most older adults don’t get around to doing this, family caregivers do sometimes have to consider some difficult trade-offs when it comes to privacy versus health, safety, or other goals.

Relevant HIPAA FAQs and other information:

If the patient is not present or is incapacitated, may a health care provider still share the patient’s health information with family, friends, or others involved in the patient’s care or payment for care?

Under HIPAA, when can a family member of an individual access the individual’s PHI from a health care provider or health plan?

Incompetence & Losing Capacity: Answers to 7 FAQs

4. Does a power of attorney for healthcare give me the right to access my parent’s health information?

HIPAA gives a patient’s  authorized “personal representative” the right to access information and medical records. A personal representative is defined as a person authorized, under State or other applicable law, to act on behalf of the individual in making health care related decisions.

So yes, if you are the durable power of attorney for healthcare, then you will have a right to access your parent’s health information, provided you are currently authorized to act.

A power of attorney document should specify under what conditions the agent can act. Some are “springing,” which means the agent can only act if the “principal” (the person signing the document) is incapacitated.

But other durable power of attorney documents may allow the agent to have authority to act right away. In this case, you can act unless there is a conflict with what the principal says (assuming the principal has not been deemed incapacitated).

For more information:

Guidance: Personal Representatives

Individuals’ Right under HIPAA to Access their Health Information

Addressing Medical, Legal, & Financial Advance Care Planning

5. My parents want their doctors to share health information with me. How can we make sure the doctors do this?

The best approach is for your parents to bring this up with their doctors and ask what should be documented, to ensure this.

Even though HIPAA itself does not require patients to provide written authorization in order to disclose information to family, clinicians usually feel more comfortable disclosing information if the patient has put something in writing. Many clinics have forms available for this purpose.

Another thing to consider is having your parents designate you as durable power of attorney for health. Consider having your parent indicate that your authority is effective immediately, rather than upon incapacity. (This is an option on health POA forms in California.) This will confirm your status as their “personal representive,” when it comes to requesting access to their medical information.

For more information:

How can I help make sure my health care providers share my health information with my family, friends, or others involved in my care or payment for my care when I want them to?

More Useful HIPAA Resources

I’ve tried to cover the practical basics for caregivers in this article, but of course, there’s a lot more to HIPAA and medical privacy. 

Here are some of my favorite resources.

HIPAA Resource List

Your Rights Under HIPAA

A Patient’s Guide to the HIPAA Privacy Rule: When Health Care Providers May Communicate About You with Your Family, Friends, or Others Involved In Your Care

HIPAA FAQs for Individuals

HIPAA FAQs for Professionals: Disclosures to Family and Friends

California Civil Code (regarding disclosures to family): CHAPTER 2. Disclosure of Medical Information by Providers

Individuals’ Right under HIPAA to Access their Health Information (Includes FAQs)

Next Step in Care Guide: HIPAA: Questions and Answers for Family Caregivers

Final Tips

Here are a few final tips for you to keep in mind, if you ever want to talk to a doctor about a relative’s healthcare.

• Plan ahead if possible.
  • Older people should consider how their family might be able to communicate with doctors in the event of an emergency, or even in the event of developing memory or thinking problems.
  • Find out how your family’s usual doctors and health providers will be most comfortable disclosing health information. Complete release of information forms ahead of time if possible.
  • Every older person should complete a durable power of attorney form for healthcare. Consider giving the agent authority to act immediately; this will enable the agent to request medical records even if the older person has not been proven to be incapacitated.
• Consider researching your state’s laws governing disclosure of health information to family and friends.
  • Many states have laws similar to HIPAA, but some may impose additional restrictions.
• Be prepared to politely help inform clinicians of what HIPAA permits. Some clinicians may not realize that HIPAA does allow them to talk to you about your relative’s health, depending on the circumstances.
  • Consider printing out a copy of the relevant HHS HIPAA FAQs for Professionals: Disclosures to Family and Friends.
  • For a good NPR story confirming that hospital employees and health providers often do NOT understand your access rights: It’s Your Right To See Your Medical Records. It Shouldn’t Be This Hard To Do.
  • Remember that although HIPAA permits clinicians to disclose information under many circumstances, such disclosures are not required. Clinicians are only required to disclose health information when a patient — or authorized representative — requests this, based on the patient’s right of access.

This article was last reviewed and updated in May 2026.

Pop quiz: What aging health problem is extremely common, has serious implications for an older person’s health and wellbeing, and can often – but not always – be prevented?

It’s delirium. In my opinion, this is one of the most important aging health problems for older adults to be aware of. It’s also vital for family caregivers to know about this condition, since families can be integral to preventing and detecting delirium.

In this article, I’ll explain just what delirium is, and how it compares to dementia. Then I’ll share 10 things you should know, and what you can do.

What is Delirium

Delirium is a state of worse-than-usual mental confusion, brought on by some type of unusual stress on the body or mind. It’s sometimes referred to as an “acute confusional state,” because it develops fairly quickly (e.g., over hours to days), whereas mental confusion due to Alzheimer’s or another dementia usually develops over a long time.

The key symptom of delirium is that the person develops difficulty focusing or paying attention. Delirium also often causes a variety of other cognitive symptoms, such as memory problems, language problems, disorientation, or even vivid hallucinations. In most cases, the symptoms “fluctuate,” with the person appearing better at certain times and worse at other times, especially later in the day.

Delirium is usually triggered by a medical illness, or by the stress of hospitalization, especially if the hospitalization includes surgery and anesthesia. However, in people who have especially vulnerable brains (such as those with Alzheimer’s or another dementia), delirium can be provoked by medication side-effects or less severe illnesses.

It’s much more common than many people realize: about 30% of older adults experience delirium at some point during a hospitalization.

That confusion after surgery that older adults often experience? That’s delirium.

The way your elderly mother with dementia gets twice as confused when she has a urinary tract infection? That’s delirium too.

Or the common phenomenon of “ICU psychosis”? That too is delirium.

What Causes Delirium?

In older adults, delirium often has multiple causes and contributors. These can include:

• Infection (including UTI, pneumonia, the flu, COVID)
• Other serious medical illness (e.g. heart attack, kidney failure, stroke, and more)
• Metabolic imbalances (e.g. abnormal blood levels of sodium, calcium, or other electrolytes)
• Dehydration
• Medication side-effects (especially those that affect brain function)
• Sleep deprivation
• Uncontrolled pain
• Sensory impairment (e.g. poor vision and hearing, which can worsen if the person is lacking their usual glasses or hearing aids)
• Alcohol withdrawal

Delirium vs. Dementia

People often confuse delirium and dementia (such as Alzheimer’s disease), because both conditions cause confusion and appear superficially similar. Furthermore, people with dementia are actually quite prone to develop delirium. That’s because delirium is basically a reflection of the brain going haywire when it gets overloaded by the stress of illness or toxins, and brains with dementia get overloaded more easily.

In fact, the more vulnerable a person’s brain is, the less it takes to tip them into delirium. So a younger person generally has to be very very sick to become delirious. But a frail older person with Alzheimer’s might become delirious just from being stressed and sleep-deprived while in the hospital.

Why Delirium is Such an Important Problem

There are three major reasons why delirium is an important problem for us all to prevent, detect, and manage.

First, delirium is a sign of illness or stress on the body and mind. So if a person becomes delirious, it’s important to identify the underlying problems – such as an infection or untreated pain – and correct them, so that the person can heal and improve.

The second reason delirium is important is that a confused person is at higher risk for falls and injuries during the period of delirium.

The third reason is that delirium often causes serious consequences related to health and well-being.

In the short term, delirium increases the length of hospital stays, and has been linked to a higher chance of dying during hospitalization. In the longer term, delirium has been linked to worse health outcomes, such as declines in independence, and even acceleration of cognitive decline.

Now let’s cover 10 more important facts you should know about delirium, especially if you’re concerned about an aging parent or other older relative.

10 Things to Know About Delirium, and What You Can Do

1.Delirium is extremely common in aging adults.

Almost a third of adults aged 65 and older experience delirium at some point during a hospitalization, with delirium being even more common in the intensive care unit, where it’s been found to affect 70% of patients. Delirium is also common in rehabilitation units, with one study finding that 16% of patients were experiencing delirium.

Delirium is less common in the outpatient setting (e.g. home, assisted-living, or primary care office). But it still can occur when an older adults gets sick or is affected by medications, especially if the person has a dementia such as Alzheimer’s.

What to do: Learn about delirium, so that you can help your older loved ones reduce the risk, get help quickly if needed, and better understand what to expect if someone does develop delirium. You should be especially be prepared to spot delirium if your parent or loved one is hospitalized, or has a dementia diagnosis. Don’t assume this is a rare problem that probably won’t affect your family. For more on hospital delirium, see Hospital Delirium: What to know & do.

2. Delirium can make a person quieter.

Although people often think of delirium meaning as a state of agitation and or restlessness, many older delirious people get quieter instead. This is called hypoactive delirium. It’s still linked with difficulty focusing attention, fluctuating symptoms, and worse than usual thinking. It’s also linked with poor outcomes. But it’s of course harder for people to notice, since there’s little “raving” or restlessness to catch people’s attention.

What to do: Be alert to those signs of difficulty focusing and worse-than-usual confusion, even if your older person seems quiet and isn’t agitated. Tell the hospital staff if you think your relative may be having hypoactive delirium. In the hospital, it’s normal for older patients to be tired. It’s not normal for them to have a lot more difficulty than usual making sense of what you say to them.

3. Delirium is often missed by hospital staff.

Despite the fact that delirium is extremely common, it is often missed in hospitalized older adults, with some reports estimating it’s being missed 70% of the time. That’s because busy hospital staff will have trouble realizing that an older person’s confusion is new or worse-than-usual. This is especially true for people who either look quite old – in which case hospital staff may assume the person has Alzheimer’s – or have a diagnosis of dementia in their chart.

What to do: You must be prepared to speak up if you notice that your family member isn’t in his or her usual state of mind. Hypoactive delirium is especially easy for hospital staff to miss. Hospitals are trying to improve delirium prevention and detection, but we all benefit when families help out. Remember, no hospital person knows your older person the way that you do.

4. Delirium can be the only outward sign of a potentially life-threatening problem.

Although delirium can be brought on or worsened by “little things” such as sleep deprivation or untreated constipation, it can also be a sign of a very serious medical problem. For instance, older adults have been known to become delirious in response to urinary tract infections, pneumonia, and heart attacks.

In general, it tends to be older persons with dementia who are most likely to show delirium as the only outward symptom of a very serious medical illness. But whether or not your older relative has dementia, if you notice delirium, you’ll want to get a medical evaluation as soon as possible.

What to do: Again, if you notice new or worse-than-usual mental functioning, you must bring it up and get your older loved one medically evaluated without delay. For older adults who are at home or in assisted -living, you should call the primary care doctor’s office, so that a nurse or doctor can help you determine whether you need an urgent care visit versus an emergency room evaluation.

5. Delirium often has multiple underlying causes.

In older adults with delirium, we often end up identifying several problems that collectively might be overwhelming an older person’s mental resilience. Along with infections and other serious medical illnesses, common contributors/causes for delirium include medication side effects (especially medications that are sedating or affect brain function), anesthesia, blood electrolyte imbalances, sleep deprivation, lack of hearing aids and glasses, and uncontrolled pain or constipation. Substance abuse or withdrawal can also provoke delirium.

What to do: To prevent delirium, learn about common contributors and try to avoid them or manage them proactively. For instance, if you have a choice regarding where to hospitalize an older person, some hospitals have “acute care for elders” units that try to minimize sleep deprivation and other hospital-related stressors. If your older relative does develop delirium, realize that there is often not a single “smoking gun” when it comes to delirium. A good delirium evaluation will attempt to identify and correct as many factors as possible.

6. Delirium is diagnosed by clinical evaluation.

To diagnose delirium, a doctor first has to notice – or be alerted to – the fact that a person may not be in his or her usual state of mind. Experts recommend that doctors then use the Confusion Assessment Method (CAM), which describes four features that doctors must assess. Delirium can be diagnosed if a patient’s symptoms include “acute onset and fluctuating course,” “difficulty paying attention,” and then either “disorganized thinking” or “altered level of consciousness.”

Delirium cannot be diagnosed by lab tests or scans. However, if an older adult is diagnosed with delirium, doctors generally should order tests and review medications, in order to identify factors that have caused or worsened the delirium.

What to do: Again, the most important thing for you to do is to get help for your loved one if you notice worse-than-usual confusion or difficulty focusing. Although families have historically not had a major role in delirium diagnosis, delirium experts have developed a family version of the CAM (FAM-CAM), which is designed for non-clinicians and has been shown to help detect delirium.

7. Delirium is treated by identifying and reversing triggers, and providing supportive care.

Delirium treatment requires a care team to take a three-pronged approach.

1. Health providers must identify and reverse the illness or problems provoking the delirium.
2. They have to manage any agitation or restless behavior, which can be tricky since a fair number of sedating medications can worsen delirium.
   1. The safest approach is a reassuring presence (family is best, but hospitals sometimes also provide a “sitter”) to be with the person, plus improve the environment if possible (e.g. a room with a window and natural light).
   2. The once-popular practice of physically restraining agitated older adults has been shown to sometimes worsen delirium, and should be avoided if possible.
3. The care team needs to provide general supportive care to help the brain and body recover.

What to do: The reassuring presence of family is often key to providing a supportive environment that promotes delirium recovery. You can also help by making sure your loved one has glasses and hearing aids, and by alerting the doctors if you notice pain or constipation. Ask the clinical team how you can assist, if restlessness or agitation are an issue. Bear in mind that physical restraints should be avoided, as there are generally safer ways to manage agitation in delirium.

8. It can take older adults a long time to fully recover from delirium.

Most people are noticeably better within a few days, once the delirium triggers have been addressed. But it can take weeks, or even months, for some aging adults to fully recover.

For instance, a study of older heart surgery patients found that delirium occurred in 46% of the patients. After 6 months, 40% of those who had developed delirium still hadn’t recovered to their pre-hospital cognitive abilities.

I even once had an older patient slowly recover from delirium over a whole year.

What to do: If your parent or someone you love is diagnosed with delirium, don’t be surprised if it takes quite a while for him or her to fully recover. It’s good to be prepared to offer extra help during this period of time. You can facilitate recovery by creating a restful recuperation environment that minimizes mental stress and promotes physical well-being.

9. Delirium has been associated with accelerated cognitive decline and with developing dementia.

This is unfortunate, but true, especially in people who already have Alzheimer’s or another type of dementia. A 2009 study found that in such persons, delirium during hospitalization is linked to a much faster cognitive decline in the following year. A 2012 study reached similar conclusions, estimating that cognition declined about twice as quickly after delirium in the hospital.

In older adults who don’t have dementia, studies have found that delirium increases the risk of later developing dementia.

What to do: Experts aren’t sure what can be done to counter this unfortunate consequence of delirium, other than to try to optimize brain well-being in general. (For this, I suggest avoiding risky medications, getting enough exercise and sleep, being socially and intellectually active, and avoiding future delirium if possible; learn more here.)

The main thing to know is that delirium has serious consequences, so it’s often worth it for a family to be careful about surgery in an older person, and it’s good to learn about delirium prevention (see below).

10. Delirium is preventable, although not all cases can be prevented.

Experts estimate that delirium is preventable in about 40% of cases. Preventive strategies are meant to reduce stress and strain on an older person, and also try to minimize delirium triggers, such as uncontrolled pain or risky medications.

In the hospital setting, programs such as the Hospital Elder Life Program (HELP) for Prevention of Delirium have been shown to work. For ideas on how families can help, see this family tip sheet from the Hospital Elder Life Program. For instance, families can help reorient a relative in the hospital, ensure that glasses and hearing aids are available, and provide a reassuring presence to counter the stress of the hospital setting.

Less is known about preventing delirium in the home setting. However, since taking anticholinergic medications (such as sedating antihistamines) has been linked with hospitalizations for confusion, you can probably prevent delirium by learning to spot risky medications your parent might be taking.

What to do: To prevent hospital delirium, carefully weigh the risks and benefits before proceeding with elective surgery. If your older loved one must be hospitalized, choose a facility using the HELP program or with an Acute Care for Elders unit if possible. Be sure to read HELP’s tips for families on preventing hospital delirium.

Remember, delirium is common and can be the only outward sign of a serious medical problem.

By educating yourself and helping your older loved ones be proactive about prevention, you can reduce the chance of harm from this condition.

And if you do notice symptoms of delirium, make sure to tell the doctors! This will help your parent get the evaluation and treatment that he or she needs.

Useful Online Resources Related to Delirium

Here are links to some of the resources I reference in this article:

• A study (one of many) finding that delirium is linked to worse health outcomes in the elderly
• A study of older adults in the Intensive Care Unit, finding that 43.5% had hypoactive delirium
• An article finding that older patients do better when they are hospitalized in an “Acute Care for Elders” unit (a special hospital ward tailored towards protecting older adults from hospital complications; they are great!)
• An explanation of the Confusion Assessment Method, which experts recommend doctors use to diagnose delirium
• A description of the Family-CAM, which experts developed to help family caregivers detect delirium
• A study finding that delirium accelerates cognitive decline in Alzheimer’s; a follow-up study finding that people with dementia decline twice as quickly after having delirium (!) is here.
• Tips on how family caregivers can prevent delirium, from the Hospital Elder Life Program