Have you noticed worrisome changes in your aging parent?

Maybe they’ve been mostly okay but now you’re seeing problems with memory, such as forgetfulness or asking the same questions repeatedly. Or maybe you’ve noticed trouble with driving, keeping up the house, managing stairs, or paying bills. 

Some aging parents simply begin to seem more withdrawn. Others start leveling accusations at others, claiming someone took or moved something, or acting paranoid.

For many adult children, these changes lead to mounting questions. What’s wrong? What’s happening? Is it safe for Mom to keep driving? Should Dad live alone much longer?

I think of this as the “uh-oh” stage. It’s a transition no one looks forward to, and most haven’t prepared for: the time when you might have to start helping your aging parent.

And for many, it comes with an added challenge:  Most aging parents don’t welcome much help from their adult children. They may see it as interference, or an invasion of privacy.

Some parents might even refuse to accept that they’re having difficulties, despite issues that feel glaringly obvious—and concerning—to you.

By the time you’re noticing changes and have safety concerns, it’s quite possible that you’re right: that your parent does need help of some kind. So how should you best get involved, especially if your attempts to do so have gone poorly in the past?

Well, it’s certainly not easy. These situations are complicated from a medical and eldercare perspective, plus they tend to bring up difficult emotions for older parents and adult children alike.

But I do believe that it’s crucial for families to get involved. It’s not likely to be easy. But it can be easier, if you’re able to learn the better ways to do so—and also what to stop doing.

The very best way to learn this is to work closely with professionals trained to assist aging adults, such as geriatricians and geriatric care managers (who are also known as aging life care experts). 

That said, geriatricians are in short supply and can be hard to find, and geriatric care managers must be paid out of pocket (although it’s often a worthwhile investment). And although local Area on Aging Agencies do exist and can be great resources, they’re also often short-staffed and underfunded. 

That’s why I’ve created this article for you, explaining a step-by-step process that anyone in this situation can follow. It’s based on what I help families do, when I advise them on how to step in and assist an aging parent.

Here’s an overview of the steps:

1. Collect the facts on the situation, by checking for specific signs an aging parent needs help or is unsafe, and by respectfully gathering information from others.
2. Get your parent’s perspective, so you can understand how they see the situation and what’s important to them, before you make any more attempts to get them to make changes. (Don’t even think about getting them to understand, agree, or accept what’s going on during these initial conversations.)
3. Find out what an ideal medical and eldercare intervention looks like, to guide plans if there really are signs of memory problems, safety issues, or declines in independence.
4. Learn some legal fundamentals about signs that mental “incompetence” or “incapacity” might be an issue, and  about legal documents, such as powers of attorney, that can better enable you to assist your aging parent.
5. Create an actionable plan that addresses what’s most important, based on what you’ve learned about your parent’s situation and priorities so far. Every family is different, but usually what’s most important might involve:
   1. Working on getting a medical evaluation, and hopefully a diagnosis
   2. Addressing the most important safety and care issues
   3. Connecting with your parent and persuading them to accept at least some changes
6. Implement your plan. Be prepared to make several attempts, because that’s usually what it takes.

(Want a much more detailed version with checklists, sample dialogue to say, workarounds for common obstacles, and “what this looks like” examples? That’s all in my book When Your Aging Parent Needs Help, and you can learn more about it here.)

Let me now explain these six steps in a little more detail:

1. Get the facts: Checking for signs your aging parent needs help

You might think you know what’s going on but surprisingly, our starting assumptions can be wrong or incomplete. That’s why it’s important, before  you do anything else, to try to gather information that will help you confirm that your worries are justified. I recommend checking  on these particular things:

• Signs of problems with memory and thinking
• Signs of problems with life tasks and safety
• What other family members and key people in your parent’s life are noticing
• Any  “bright red flags” that indicate you probably should step in sooner, rather than later

To help people check for worrisome signs, I created a free downloadable guide a few years ago, with easy-to-use checklists. You can get it here: Quick Start Guide to Checking for Health & Safety Problems.

Making a systematic effort to gather this information will help your family have a clearer picture of the problems and concerns. Doctors and eldercare experts will also need details about what’s going on, whether to help them make a diagnosis or just figure out what kind of support and safety measures will be needed.

2. Get your parent’s perspective: How to learn what matters to them and how they’re seeing things

Even if you’ve already tried talking to your parent(s)—and if you’re like many of the families who write to me, you have—chances are good that you haven’t yet used the most effective approaches. 

Families often talk to a declining older person with the intention of getting them to understand, or accept, that problems have arisen and that certain steps should be taken to keep them safe and well.

This is well-intentioned and understandable. Unfortunately, it tends to be counter-productive and often leads to frustration and conflict.

So you’ll want to take a different approach to these talks. Which is to “talk” with the intention of listening, and helping your parent feel heard.

This is the way a geriatrician approaches a patient, especially one who is reluctant or resistant. You want to listen intently, to learn more about what they’re thinking, feeling, and preferring.

At the same time, you’ll want to avoid arguing, correcting, or attempting any convincing. (Now is not the time.)

When you learn more about how your parent sees a certain situation, and what matters the most to him or her, you’ll end up in a stronger position to invite them to try a change you think will help them.

Taking this important step can help soften resistance and improve the odds of practical success. Many families are relieved to find it also  builds “relationship capital”—goodwill you’ll need for the challenging future.

For more on how to talk about a tricky concern, try this video (it’s about memory loss, but you can use the same technique to ask about something else you’re concerned about):

3. Get informed: What an ideal medical and eldercare assessment and intervention looks like

Let’s face it, what’s “ideal” doesn’t always happen. Still, it’s super useful to know what experts advise should happen, in a perfect world where you could control everything, because this gives you a guide for where to aim your best efforts. That can save you time and trouble later. 

Key is getting a medical evaluation. This is because most worrisome “life” problems families notice in an aging parent are actually being caused or worsened by an underlying medical issue. You want to get answers to questions like: What might be causing the symptoms we’re concerned about? Could medications be an issue? (They often are.) What’s the plan for follow-up and what happens next? 

If you’ve been worried about memory or other thinking skills, the doctor (and starting with your parent’s primary-care provider is fine) should look for underlying causes of cognitive impairment. For more on what should be checked, see Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check. If your main concern is paranoia or false accusations, also see 6 Causes of Paranoia in Aging & What to Do.

The ideal approach also involves taking steps to address immediate safety concerns and assist your parent with any daily life tasks they’re currently struggling with.

Working with specially trained social workers or geriatric care managers can be very helpful to assess housing and care needs, and to come up with a plan to meet them. These professionals also usually have ideas on how to manage common safety concerns, such as driving difficulties , or trouble managing finances.  Or you can begin to look for resources in the area to help you. I suggest some excellent starting places in this article. The Quick Start Guide also includes ideas on how to get help with any problems you notice.

Last but not least, setting up certain lifestyle changes can help an aging parent maintain the best possible physical health, and can also slow cognitive decline, if any is present. For my top suggestions on maintaining a healthier brain, see here, and for my suggestions on maintaining physical health, see here.

4. Learn about the potential legal angles: Signs of mental “incompetence” or “incapacity” and legal documents to check for

If you’ve noticed any problems with memory, judgment, or other thinking skills, then it’s a good idea to learn more about mental capacity and when an older person might be considered incapacitated or “incompetent.”

This matters for several reasons. One is that if your parent has ever completed a power of attorney for healthcare, or for legal affairs, it may only give you (or someone else) the ability to act if they are “incapacitated.” (This is sometimes called a “springing” power of attorney.)

It also matters because if there are signs that an older person has lost the capacity to mentally understand the risks of a given situation, then it becomes more ethically – and sometimes legally – permissible for you to intervene.

Now, just because your aging parent rebuffs your concerns, ignores safety issues, or refuses to accept help, that doesn’t mean he or she has lost mental capacity.  Still, it can be a good idea to learn more about capacity so you’re clearer about whether to look into it more now, and in case the situation changes.

Your understanding of your parent’s mental capacities can and should affect how you approach them when the time does come to take next steps, or try to convince them to make a change. 

You can learn more about capacity here: Incompetence & Losing Capacity: Answers to 7 FAQs. For more on powers of attorney, see here.

5. Put it all together: Create a next-steps action plan customized for your family’s situation and parent’s preferences

Now that you’ve laid the important foundation of observing, listening, and learning, it’s time to put it all together and take action.

Obviously, there’s no single “right” way to go about helping an aging parent; what you do will depend on what’s going on with your parent, what matters to them, what’s feasible, and more. 

Here’s an A-B-C formula can help you create a plan that works for you:

1. ASSESS: First, you want to review your assessment of the situation right now: your parent’s thinking skills, observed safety issues, life tasks they’re struggling with, and other key issues, as well as your parent’s/family’s priorities. You’ll also want to review how much of the ideal next steps have taken place so far.

2. BRAINSTORM: You’ll then weigh your options for taking next steps. You’ll need to consider things like:

• What seems most urgent/important to address?
• What seems most feasible?

3. CHOOSE AND PLAN: Based on what you’ve brainstormed, pick one to three issues you’re going to focus on. (If you have siblings or other involved family members, it’s best to do this together and coordinate.)  For each issue, plan some specific next action steps. These might include:

• Something to research (a health problem, a legal point, a service, an agency, experts, and so on).
• Something to do (make a call or appointment, tour a facility, review medication, hire someone, and so on).
• A conversation to have (with your parent or sometimes someone else, like a consultant, the doctor, a neutral third party, a sibling, your other parent, and so on).

6. Implement your action plan: Be prepared to persist 

NOW you’re ready to effectively step in and try to “do something” to help your aging parent. Give it your best go, taking the next steps you’ve planned out.

Be sure to use your best communication skills and consider capacity issues, if appropriate. (They often are.) Failing to focus on good communication and the importance of capacity trip up many families.

Based on how things go, you’ll reassess, adjust your approach, and likely try again. I like to tell people they should plan on “experimenting,” because families almost never get the progress they’re hoping for right away.

In fact, it’s normal for this part to involve a lot of back-and-forth as you try to move past certain roadblocks or figure out the best tack to take with your parent (or with someone else who’s involved, such as another family member or your parent’s doctors).

There’s an art to learning to persist and try a few different approaches as you try to help your aging parent. To get past the most common roadblocks, such as your parent refusing to go to the doctor, I recommend crowdsourcing ideas and advice from others in a support group; there are some good free ones online. 

I also have a whole chapter on getting past common roadblocks in my book, “When Your Aging Parent Needs Help: A geriatrician’s step-by-step guide to memory loss, resistance, safety worries, and more.”

No matter what happens next, consider it progress

If you follow the steps outlined above and persist, the odds are very good that you’ll get your parent more of what they need for their care and safety—and you’ll likely get them to come to better acceptance of the changes.

Now, it’s definitely possible to do all the “right things” but still end up feeling stuck. That’s not unusual. There are, in fact, additional options to consider, if you’ve made multiple well-thought-out attempts to help yet feel your efforts are going nowhere.

For instance, it may be appropriate to consider “watchful waiting,” or even looking into last-resort measures such as petitioning for guardianship. (These are beyond the scope of this article; my new book includes a separate chapter on these scenarios.) 

Even if things stabilize, you’ll probably have a sense that something has changed since your initial “uh-oh” moments. And it has. Your family has shifted to a new stage of life.

The “new normal” might wind up feeling familiar (if seldom exactly the same as before), allowing you to step back awhile. Or you may be in active “help mode” for a long time. That’s pretty common. 

Whatever this ongoing journey through this stage of life is like for you and your parent, simply by approaching your aging parent using this thoughtful and caring process, you will be making a needed difference. 

That’s because what your parent needs most of all, during this time of change for them, is your presence and your connecting with them. You won’t be able to control everything and you probably won’t be able to get all the safer outcomes you want for them.

But that’s ok. You’re showing up to help, you’re learning to do it in better ways, and you’ll be doing the best you can to accompany them on their aging journey. And that will make a huge difference for your aging parent.

I hope this article and my step-by-step process will be helpful to you. If you have questions or comments, please post them below.

You might also find my free online training for families helpful (see below), in which I teach families how to help reluctant older loved ones.

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.