Posts Tagged ‘dementia’

Doctors, Dementia, and Driving: Impaired Operators Behind the Wheel (and Behind the Stethoscope?)

Saturday, January 27th, 2018

My colleague, a seasoned primary care physician, admitted that he hadn’t seen it coming. Worse yet, despite his years of experience, he felt ambushed and hadn’t known what to do.

An eighty-four year-old retired librarian we’ll call Millie, though that wasn’t her name, came in for a six-month checkup. She had been my colleague’s patient for many years, and they had enjoyed a warm doctor-patient relationship. Other than mild dementia, Millie had been fairly healthy. Just fifteen minutes had been scheduled for her appointment, and my colleague expected a straightforward, routine visit. So he entered the examination room unprepared to find himself in the middle of a minefield.

The first inkling of a problem was that Millie’s daughters sat with her in the examination room, awaiting my colleague. Millie had always come alone, and there had been no occasion to meet any of her children before. Initially they sat quietly, appearing on edge. But not two minutes into the visit, the older daughter interrupted my colleague, blurting that THEY had decided that their mother was no longer a safe driver. They wanted her to surrender her car keys but she was being “unreasonable” and had refused. So they expected my colleague to “talk sense into her” and to “order her to stop” driving.

Before my colleague could react to this startling demand, Millie, who had always been mild-mannered, erupted in snarling outrage. Scolding my colleague, she reminded him that she’d started driving long before he was born and had a perfect record; not even a parking ticket. Hissing a rebuke, she declaring that she’d always suspected him to be a “treacherous quack” who couldn’t be trusted. And she threatened to find a new doctor and sue him.

Reading this account, were you as stunned as my colleague? Did you find the behavior of Millie and her daughter surprising? If so, then you might be additionally surprised to learn that situations like this are not rare. I’ve found myself in similar encounters more times than I care to remember.

Each year the number of older drivers increases. Until age sixty-four, people become safer drivers as they age. But after that, declining health, both physical and mental, begins taking its toll on many abilities, driving included. Some elders remain safe drivers into their late nineties. On average, though, older adults outlive their driving ability by seven years.

Many older drivers recognize when this happens and gracefully “retire” from driving. Others need to be convinced of the necessity. Physicians’ opinions often are sought as part of this process. Whether because of, or in spite of their doctors’ input, most initially reluctant older adults eventually quit driving “voluntarily”.

And then there are those, like Millie, who present a greater challenge. Unable to face facts (in Millie’s case, symptoms of dementia and a combination of psychological and family factors conspired against her), they steadfastly deny that there’s anything wrong with their driving. They refuse to quit, often becoming angry, unreasonable, hostile, or paranoid. Not knowing how to handle this, or where to turn for help, family members can become overwhelmed. Some seek guidance from geriatric psychiatrists.

Driving cessation can be an emotional crisis for older adults; many do not cope well with it. Some, like Millie, behave maladaptively, severely challenging healthcare professionals and family members alike. I’ve worked with many such patients. Their family members all say that the struggle to curtail their older relative’s driving is the most stressful challenge they’ve ever faced. Invariably they experience one or more symptoms of anxiety, dread, anger, resentment, depression, or insomnia. They’re afraid to let their relative drive, but they’re also afraid to take away his or her keys. These are thorny problems, and usually there is no solution anyone is happy about, doctors included.

From time to time my colleague sought “curbside” consultations from me, so later that day he called me for help with Millie. He was shaken up. No novice at handling emotionally charged, contentious, patient encounters, this one had flummoxed him. Discovering what he hadn’t known rattled him: he hadn’t known how to assess Millie’s driving ability; he hadn’t known what responsibility he had to report Millie to the motor vehicle department; he hadn’t known how to respond to the daughters’ demand that he “order” Millie to stop driving. Somehow, despite his years of experience, he’d not confronted a situation like this before. But physicians increasingly are facing such challenges, and most are no better prepared than was my colleague.

Studies show that physicians generally feel untrained and unqualified to assess mildly demented patients’ driving ability. You’d think this wouldn’t be the case given the aging of the population and the increasing numbers of older adults with mild dementia who still drive. But it is.

The vast majority of physicians has had no training in assessing driving risk and don’t know how to do it. They worry about their patients’ driving safety, but they also worry about the detrimental consequences of driving cessation: loss of independence, declining wellbeing, deteriorating health, and depression. And taking away the car keys can irreparably damage both family and doctor-patient relationships, making it that much harder to provide older adults the help and support they need.

Doctors have no clear guidelines for weighing these competing harms. Society has set no standards for how much driving risk is acceptable. We let teenagers drive, and they are very risky drivers, as a group. Older drivers, on the whole, are not worse drivers than teenagers, those with dementia being a possible exception. To make things even more impossible for doctors, studies show that the tests doctors can perform in the office (other than vision tests) do not reliably predict driving safety; a behind-the-wheel, roadside test, conducted by a driving professional, is the gold standard. Lacking “rules of the road” to follow, doctors often do not know the right course of action to take. Believe me, it’s a lot harder than it seems.

In my experience, family members desperately want to prevent their older relatives, whom they feel no longer drive safely, from getting behind the wheel. But they want to accomplish this with as little emotional trauma as possible. They don’t know what to do, don’t want to do the wrong thing, and don’t know where to find the help they need. All too often they feel left in the lurch by healthcare professionals. Geriatric psychiatrists often can help, and that’s why my colleague called me. He wanted to pick my brain, but he also wanted to refer Millie and her family, to me.

Unfortunately, few families have access to geriatric psychiatrists (that’s another, even more complicated story, for another day). So, what can you do if you are worried about an older driver? If you’re a family member (or other caregiver), start by seeing your relative’s doctor. He or she may be able to offer some helpful advice or guidance. But be realistic. Understand that you may be dealing with a complicated situation beyond the doctor’s expertise.

If you find yourself in this predicament, an excellent resource you can download and read to help you understand better what to do is A Clinician’s Guide to Assessing and Counseling Older Drivers, published jointly by the National Highway Transportation Safety Administration and the American Geriatrics Society. And if you are a physician, other type of healthcare professional or elder services worker, concerned about the driving of one or more of your older patients or clients, this is an excellent resource for you too.

Two weeks later Millie and her daughters came to my office for an appointment. Despite having no idea about why she had come to see me, Millie was her usual, pleasant, mild mannered self. She had no recollection of her recent encounter with my colleague, and had nothing but glowing praise for him.

In contrast, her daughter, yes, that one, the one who demanded action of my colleague, entered my office spitting nails and breathing fire. Not granting me even the two-minute courtesy she gave my colleague, she demanding to know whether I intended to order her mother to stop driving, or was I going to be as “lame” as the other doctors (She also wasn’t too pleased with a neurologist they’d consulted). Yikes!

Want to find out how I handled this situation? Watch for an upcoming post in which I’ll describe what happened, and I’ll discuss what geriatric psychiatrists can do to help older drivers and their worried family members.

Dementia, By Any Other Name, is Still Dementia

Tuesday, November 22nd, 2016

Have you adopted the DSM-5 nomenclature “major neurocognitive disorder”, or have you continued to use “dementia”, as I have? DSM-5 was released in 2013, introducing neurocognitive disorders, major and minor. In the years since, I’ve noticed that many psychiatrists, but not all, have adopted the new nosology. But other physicians, including primary care physicians and neurologists, and most geriatric psychiatrists, still use “dementia”. And ICD-10 uses the tried and true term “dementia”. Nevertheless, as a medical school faculty member, responsible for the training of medical students, residents, and fellows, I suppose I should toe the DSM-5 line, but I’m not going to do it. It’s a pet peeve.

It’s almost 2017, and you might wonder what took me so longer to get around to expressing my objections to the reclassification of dementia as a neurocognitive disorder. Fair question. Suffice to say I’ve been busy. “What could have been more important this this?” you ask. For one, there’s Medicare, moving target par excellence, source of endlessly changing rules, regulations, and (dis)incentives, and general bane of existence. And then there’s my book, Beat Depression to Stay Healthier and Live Longer: A Guide For Older Adults and Their Families, published earlier this year. It’s a terrific book and easy to read, if I do say so myself. I assure you that nary a page deals with ICD-10, but there is a terrific chapter, suitable for the lay public and clinicians alike, on the differential diagnosis of depression, covering the different types of depression, other conditions that masquerade as depression, and how to tell them apart. Ironically, I used DSM-5 terminology. I’d highly suggest getting a copy: no, not DSM-5, my book! Even before you finish reading this post, you may wish to order it on amazon.com.  You won’t regret buying my book, but, back to DSM-5 and dementia.

First my “minor” major neurocognitive disorder objections. I simply like the term “dementia” better. It’s traditional, having been in use for well over 100 years. Healthcare professionals all know what it refers to, and much of the public does. And it’s shorter and easier to say. “Major neurocognitive disorder” doesn’t exactly roll off the tongue.

And now my “major” major neurocognitive disorder objections. Actually I don’t object to “neurocognitive” for the category of syndromes, generally, but I don’t see the advantage for dementia specifically. True, “neurocognitive” does describe a major aspect of dementia. But is also seems too narrow, the most disruptive and disabling manifestations of dementia being their psychiatric and behavioral complications. And, and the same time, it also seems non-specific, schizophrenia clearly also being a disorder involving severe neurocognitive impairment. Had they asked me, I’d have suggested letting dementia be dementia, and calling the category of disorders “acquired disorders of widespread brain impairment usually first manifest in late life”. Nobody asked me, but, no matter, there’s always DSM-6 to look forward to.

What do you think? Send me a comment, and let’s start a discussion.   If you’d like to receive my online newsletter, please navigate to the contact page and leave your email address.

WE NEED MORE ELDER LAW ATTORNEYS

Monday, September 5th, 2016

Priority one is the critical shortage of geriatric psychiatrists, but once we do something (we currently are doing nothing; quite the opposite) to increase their ranks, we need to increase the availability of elder law attorneys. I don’t know too many people who say we need more lawyers, but I do; at least those who know something about mental health, aging, and the law.

If you follow this blog, you’ve probably noticed that I don’t usually write about elder law issues. Over the years I’ve noticed that the legal system, doesn’t get mental law as it pertains to Alzheimer’s disease and related disorders very well. Since coming to New Hampshire Hospital, I’ve become more acutely aware of this. The following case is illustrative.

My patient – we’ll call her Doris, but this is not her real name – is sixty years old. She was admitted to the hospital one year ago, after she was found wandering in traffic. The police apprehended her and found her to be disheveled and incoherent. They took her to a local hospital emergency room, where she was calm and alert but absolutely incoherent. She made no sense at all, save a few terse phrases she repeated over and over. Tests were unrevealing. There was no evidence that head injury, infection, drugs, or other physical illnesses could be causing this.   The consulting psychiatrist at the hospital thought she might have schizophrenia, and she was committed to a community psychiatric hospital and transferred shortly thereafter to New Hampshire Hospital, the state psychiatric hospital.

Doris has a complicated history: Long story short, she has frontotemporal dementia, not schizophrenia. How a patient with severe dementia winds up in a state psychiatric hospital raises many other issues, for another day. There is little we can do for her beyond providing total care and supervision in a secure, safe environment and relieving her agitated distress with psychiatric medications.

But this has worked out well, and for the last eleven months Doris has been stable. She paces about ceaselessly, and but for the locked door to our unit, she would wander away. Her only activities besides wandering around are eating and sleeping. She can participate in no activities, even simple sensory stimulation. Doris remains completely mute except for three 1-3-word phrases she utters repeatedly throughout the day. One of these utterances is “No!” She cannot answer even simple yes/no questions (when she says “No!” it is not in response to a question or a request to do something), carry on a conversation, or express any likes, dislikes, or preferences.

It took us one month to decide that she needed long-term care, and that a nursing home with a secure memory care unit would meet her needs and be in her best interest. It took another eleven months to make this happen.   The delays were mostly bureaucratic, and I won’t bore you here with the details. Instead let’s talk about the last delay, which occurred at the hands of the legal system, and brings us to the point of this post.

In order for a nursing home to admit her she needed a guardian. Not a problem. We got one, no problem. Last hurdle cleared? I’m afraid not. We could not find a nursing home with the services she needed. Few had secure memory care units. Even fewer had access to expert geriatric psychiatry consultants to help them take care of her. To be fair, patients with frontotemporal dementia do pose significant challenges for nursing homes. After we exhausted all avenues, we turned to the last remaining option, the state’s specialty psychiatric nursing home.

We made the necessary applications and again waited out the bureaucratic delays. One of these is the requirement for guardians to petition the court for the added authority to admit a ward to this particular nursing home. Usually this is pro forma, so when the guardian filed the necessary motion, we expected quick approval. A hearing was scheduled, and the court appointed an attorney to represent Doris – routine SOP.

Now here’s where things became unreasonable. The court-appointed lawyer came to interview his client, Doris, and, after meeting with her (which means he followed her about the unit while she paced continuously) he somehow decided that she had a clear objection to the proposed transfer. So he filed a motion opposing the guardian’s petition! True, we provide Doris very good care, but that’s beside the point. She’s not consciously aware of it or her options. Not only is she incapable of making an informed choice, she’s completely unaware of the choice. This is obvious to everyone, including family members, except her attorney. How did he decide that he knew his client’s wishes? You don’t have to be a geriatric psychiatrist or a forensic psychiatrist to see that it’s obvious that she does not have the capacity to assist in her own legal representation.

The cynics among you probably think that Doris’s lawyer simply took advantage of what seemed like a no-muss-no-fuss way to rack up billable hours. I don’t think so. I’ve seen this attorney in action before and have had the impression that he takes his role as an officer of the court very seriously and is zealous about his responsibility to represent his clients’ wishes as best he can. Somehow he construed Doris’s limited vocalizations as expressions of her preferences.

Here’s what I think happened. Recall that Doris only utters three phrases, one of which is “No!” If you “lead” this witness properly, you might get what sounds like an emphatic position: “Doris, do you want to leave New Hampshire Hospital”: “No!” “Doris, would you like to be transferred to the psychiatric nursing home?” “No!” Assuming something like this transpired, you have to be very cynical or very naïve to use it as the basis for legal representation. Physicians would not take this for an informed refusal of care, and you would think attorneys would apply similar standards.

You might make the case that, given the adversarial nature of our legal system, that the best thing to do would be to oppose the motion and let the court decide based on the facts established in the courtroom.   Okay, but at what expense?

Because Doris would not know where she was or understand what was going on, and could not sit still and remain quiet while court was in session, and might become agitated, I filed a petition to waive her presence. There clearly seemed no benefit to her to be there. But Doris’s lawyer insisted she come. Three hospital staff members were required to transport her to and from the courthouse and accompany her while she was there. Despite their presence, Doris wandered around while court was in session and approached the bench twice and yelled “No!” at the judge. Fortunately, she did not become physically aggressive. I don’t know how gentle the bailiff would have been with her. And, because the motion was being contested, Doris’s social worker and I also had to be present to testify. Add in court time, and you can appreciate how costly this hearing was.

Even worse, by delaying Doris’s inevitable transfer this legal charade squandered precious hospital resources. Psychiatric beds, especially geriatric psychiatry beds, are in critically short supply in my state. Doris had not needed inpatient psychiatric services in many months, and while we waited to transfer her to a long-term care facility other, mentally ill elders waited for services because there were no open beds on our unit. Many severely psychiatrically ill geriatric patients wait in hospital emergency rooms for days, and sometimes weeks, until a bed opens in our program. Often the get admitted to general adult psychiatry units instead. This is better than languishing in the emergency room, but falls short of the specialty geriatric psychiatry care they need.

These days physicians are exhorted to make clinical decisions not only based on the best interest of their patients but also with an eye toward the conservation of healthcare resources, which is in everyone’s interest. Shouldn’t the legal system bare some of the same stewardship responsibility?

When Doris’s attorney represented to the judge that Doris had expressed a preference not to be transferred I was incredulous: Her lawyer either perjured herself or was incompetent. In Doris’s case, I’m pretty sure it was the latter.

Don’t get me wrong. We need more attorneys who are zealous about protecting their older client’s rights. But they must understand something about geriatric psychiatry. In my experience, some older adults too easily get railroaded into nursing homes before other options are properly explored, because their attorneys do not know the right questions to ask or consultations to seek. Attorneys familiar with aging issues, dementia, and geriatric medicine can prevent this. But lawyers who are familiar with the needs of patients with severe dementia can ensure their clients’ rights and interests are protected and respected while avoiding unnecessary legal delays and costs that don’t serve their clients well and logjam the healthcare system.

Gary S. Moak, M.D

Author of Beat Depression to Stay Healthier and Live Longer: A Guide for Older Adults and Their Families