5 Key Basics About HIPAA

Q: My 87-year-old father lives alone. His house has become increasingly dirty, but he refuses to get help, even though I’m sure he needs it. I’m worried that he’s becoming incompetent and in need of elder care, but he doesn’t want to go see the doctor. What can I do?

A: This situation does come up a fair bit with aging parents and relatives. I’m sorry to say there usually are no easy solutions. But there definitely are  things you can and should do, and it’s better to act sooner rather than later.

Let’s review what you can do. I’ll also explain what I’ve learned about “incompetence” over the years, and how doctors usually play a role in the evaluation of such older adults.

Then, I’ll share some thoughts on how older people and families can plan ahead, to avoid facing this kind of dilemma. And then last but not least, I share a few thoughts on taking care of yourself as you go through this.

The usual concern, for a person of this age, is that the person may have developed memory loss, or a dementia such as Alzheimer’s disease.

This is a pretty reasonable worry, since an estimated 30% of people aged 85+ have dementia. (Wondering about dementia vs Alzheimer’s? Here’s where I explain dementia and how it’s related to Alzheimer’s.)

And of course, if your older parent seems to be doing worse than before, when it comes to activities that require mental organization (such as keeping a house reasonably clean), that further increases the chance that some kind of brain deterioration is causing problems.

But, we should never start by jumping to the conclusion that someone has developed dementia and needs elder care.

The main thing you wrote above is that you’re worried about a dirty house and a refusal to get help. This could be due to thinking problems. But it could also be due to pain and mobility problems, combined with a common reluctance to accept assistance.

Still, I have to admit that in many similar cases that I’ve encountered, the older person does have cognitive impairment. And we do often find it’s substantial enough and irreversible enough to qualify as dementia. (For more on dementia diagnosis, see my post “How We Diagnose Dementia: the Practical Basics to Know.”)

Now, even if he does have dementia, that doesn’t mean we can’t improve his thinking. I often find that by adjusting medications or the older person’s situation, we can optimize brain function and help the person manage better, despite the underlying dementia.

We also sometimes find that an older person is experiencing delirium from an illness or other health problem, which can make the thinking worse than usual.

So, getting him the right medical evaluation and optimization is key. You might even be able to get him to the doctor not by saying “You need to be checked for dementia,” but by saying “We need the doctor to help you feel your best and be your best, since that helps you keep living at home for as long as possible, which you’ve said is important to you.” (It’s key to frame your suggestions as ways to help your father achieve his health and life goals.)

Of course, these are all things that can be found out after the older person has been medically evaluated, and by someone who knows how to assess cognitive symptoms correctly.

Part of your frustration is that your father doesn’t want to go see a doctor. So you’re stuck: worried that something’s wrong, worried that your father has become “incompetent,” and unsure as to how to move forward since your father is refusing to cooperate. Let’s talk about your options for doing something, despite your father’s reluctance.

How to get elder care for an aging person

Start by asking yourself whether you think your father really might have lost mental insight and abilities, as opposed to simply making choices that you disagree with. (See “8 Behaviors to Take Note of if You Think Someone is Getting Alzheimer’s“.)

If you think he really is cognitively impaired, then you probably should consider pushing things a little more, to get him the help he seems to need.

For more tips on how to get an aging parent to see the doctor, even if they’ve been resisting, watch this video:

I would also encourage you to make a list of specific concerns and red flags. You can use the “Quick Start Guide to Checking Older Parents” or a similar checklist, to help you identify specific problems that need attention.

Once you’ve decided how worried you are about dementia, and listed the key problems to address, here are some resources that can help:

• Your father’s regular doctor. This can be a good place to start, especially if it’s a doctor who has known your father for a while. Contrary to popular opinion, the HIPAA regulations (which govern the privacy of health information) do not preclude you, an adult child, from contacting your father’s doctor and relaying your observations and concerns. You can see if the doctor is willing to hear you out on the phone, and then do send in your concerns in writing, since those will usually be scanned into the chart. The doctor may be able to help you persuade your father to come in. On the other hand, if the doctor waves off your concerns saying there’s nothing to do, you’ll need to look elsewhere for help. And you’ll want to look for a doctor who is more up-to-date on the medical care of aging adults with cognitive impairment. For more on how the doctor should evaluate cognitive impairment, see here: Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check.
• Adult Protective Services (APS). To find contact information for your local APS office, enter your father’s zip code in the locator at Eldercare.gov. APS caseworkers respond to reports of abuse or neglect of older adults, including “self-neglect.” Generally, the identity of the person reporting a concern to APS is kept confidential, so your father wouldn’t be told you reported him (although he may have his suspicions of course). APS offices tend to be overworked and underfunded, as is often the case for social services. But in principle, they will look into the situation, visit your father, review medical information from his doctor, assess his capacity to understand risks and give informed consent, and take action to ensure his safety if warranted. APS does sometimes initiate a court petition for legal guardianship of an older person. For more on APS, click here.
• Social worker experienced with older adults. To find a social worker to help you troubleshoot the situation, you can try calling your local Area Agency on Aging (see the Eldercare.gov locator again). Some primary care offices also offer social work services, especially if they are bigger or serve vulnerable populations. You can also try asking around at local senior centers. That said, in my experience, it’s rare for social workers to visit aging adults at home unless they are sent by a home health agency. So although it’s worth looking for one, if you want someone to go see your father at home — which you probably do — you may need to pay for a geriatric care manager or other “eldercare problem solver”.
• Geriatric care manager or eldercare expert. These professionals usually have to be paid out-of-pocket, and they specialize in helping aging adults and families get through all kinds of late-life challenges. They usually have a background in social work, gerontology, nursing, and/or family therapy. I have worked with several of them and they are quite helpful to families. They can do things like coach adult children on how to more constructively discuss difficult topics, mediate family conversations, and help families find the right kind of help. To find a professional affiliated with the Aging Life Care Association (formerly the National Association of Professional Geriatric Care Managers), visit AgingLifeCare.org.

How to know if an older person is “incompetent”?

Now, you’re getting help because presumably, you want to help your father with his goals, which for most aging adults include maintaining independence, dignity, and quality of life.

But you also mentioned a worry that he is becoming “incompetent.” This is an important question to address, and families often ask me to weigh in on this. What I tell them is that as a doctor, it’s not for me to say whether the person is “competent.” Instead, my role is to help assess an older person’s capacity to make medical decisions, and also to identify underlying medical problems that might temporarily or permanently affect decision-making.

You should know that the term “incompetence” was historically used to refer to a legal determination. In other words, it’s up to courts, not doctors, to say whether someone is incompetent. This is governed by state law so different states have different criteria. But overall, if someone is found in court to be incompetent, they often will be assigned a guardian or conservator to manage decisions on their behalf.

To decide whether an older person is legally competent, the court will need to know about the person’s ability to manage certain major types of decisions. These might include:

• Medical consent capacity
• Sexual consent capacity
• Financial capacity
• Testametary capacity
• Capacity to drive
• Capacity to live independently

For more on incapacity, see this article: Incompetence & Losing Capacity: Answers to 7 FAQs.

The tricky thing about capacity is that it can certainly change depending on the day and situation. For instance, a person who is sick and delirious might temporarily lose all the above capacities. A bad depression could also affect capacity for some time. People with dementia or other forms of cognitive impairment are also prone to have their mental capacities fluctuate somewhat, depending on the day and whether their brains are functioning at their best.

So how do doctors and psychologists weigh in on capacity? The truth is that it’s pretty variable, and it’s also an area of law and clinical practice that is evolving.

For the best information on how clinicians should address issues related to capacity in older adults, I recommend this resource, which was created as a joint effort between the American Psychological Association and the American Bar Association: Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists.

Obviously, as it’s written for clinicians rather than for the public, it’s rather long and technical. (There are links to similar handbooks for lawyers and for judges here.) But if you really want to understand this topic, that’s the best info I’ve found.

But bear in mind that although the handbook above describes the best recommended practices, many clinicians may practice a little differently, often due to lack of time or training.

For instance, because medical problems often interfere with an older person’s mental capacities, doctors are routinely asked to weigh in. In principle, when asked about someone’s capacity, a doctor should first want to know “Capacity to do what, or decide what?” And then the doctor should write a statement specific to that question, providing documentation supporting his or her conclusions. The doctor should also ideally state whether any incapacity seems likely to be permanent or not.

But that’s not how things often work in the real world. In practice, I’ve often been asked just to say whether an older person “has capacity” with no additional specifications. I’ve also seen many doctors write vague statements saying “Mr. So-and-so has lost his mental capacities.”

How valid are such statements? I suspect it depends on the jurisdiction and the purpose to which the doctor’s note is used. For instance, some people have trusts or other services that require a “doctor’s statement” in order to allow someone else to step in, and these may have different standards compared to the courts.

How to plan ahead to avoid these problems

The very best approach, of course, is for an older person to have previously planned for this situation. By this, I don’t mean simply completing paperwork in order to designate a relative or friend as durable power of attorney for health, and also for finances.

Don’t get me wrong, planning ahead with such power of attorney paperwork is very important and very helpful. (Read more about this here: How to Avoid Problems Due to Aging Incapacity: The (Better) Durable General Power of Attorney.)

However, such power of attorneys don’t quite address the situation that all aging adults should plan for: the possibility that they’ll be cognitively slipping and unable — or unwilling — to admit it and let others assist as needed.

I have only rarely seen older adults prepared for this, even though everyone has a fairly substantial chance of developing Alzheimer’s or another dementia provided they live long enough.  (Remember, about 30% of those aged 85+ are cognitively impaired, and it goes up to about 50% of those aged 90+.)

Being a doctor, rather than a lawyer, I’m not qualified to say what constitutes the best preparation. I will say that the better situations that I’ve encountered occurred when an older person had:

• Created a trust,
• Designated a trustee or fiduciary to take over when needed,
• Specified what conditions would trigger trustee take-over, and
• Specified what the care priorities should be in the event that the older person became permanently unable to make decisions.

But again: I am not a lawyer and this is not legal advice. The expert advice consistently is to plan ahead, plan ahead, plan ahead.

To that I would add:

1. Hope for the best
2. Plan for the likely (eg eventual severe dementia if you’ve been diagnosed with mild dementia)
3. Plan for the quite possible (a fall in which you break a hip, eventually developing dementia, etc)

Your father did not plan for this situation. However, as you help him work through the current situation, keep the above planning principles in mind! You’ll almost certainly have more to plan for, especially if he does end up diagnosed with dementia (which means you or someone else will need to make decisions at some point).

If you’d like to learn more about how to talk to your father about your concerns, and how to know when to step in, I cover this in more detail in my free training for families; see below.

As I said at the beginning, this kind of situation is hard to sort through.

It’s messy, and complicated, and stressful, and also tends to bring out whatever family tensions tend to come out when families face problems.

So. If you are worried about an aging father who lives at home alone and might be “incompetent,” you can’t just focus on helping your father. You’ll also have to start equipping yourself to handle what is likely to be a stressful and messy time for the next several months to years. Investing a little time — and possibly a little money — in this will pay off for your father, for you, and for those around you.

The basics of this include making sure you get enough sleep, regular exercise, nutritious food, activities that refresh the soul, and all the other things that are good for humans.

I would also recommend cultivating a mindfulness practice, if you don’t already have one. A variety of free resources are available online, and there are also apps such as Headspace and Calm. The key is to do at least 10 minutes every day. Or for more support, enroll in a mindfulness-based stress reduction course, such as this one.

Last but not least, you’ll need support from friends and family. It’s also usually helpful to get support from others facing similar challenges with aging parents; you can find these in-person and online. You’ll connect with people in similar situations, who will provide helpful suggestions and will completely understand when you need to vent your frustrations.

Good luck!!

This article was first published in 2015. Because I have gotten SO many questions about these types of situations, I wrote a book to walk families through what to do, and it covers the question of incompetence. Learn more here. This article was last reviewed & revised with minor updates in June 2024.