Assessment of Capacity in Older Adults

One important area where geriatric psychology intersects with the law is in the area of  mental capacity evaluations. Capacity can be defined as the “mental (or cognitive) ability to understand the nature and effects of one’s acts.” Competency, by contrast, is typically considered a purely legal term, and is defined as “duly qualified: having sufficient capacity, ability, or authority.”

People are typically familiar with the idea of competency to stand trial – the most well-known cases are often lurid ones (such as the Jared Lee Loughner case) where defendants have allegedly committed particularly heinous acts and then are found “not guilty by reason of insanity” or more commonly these days, “incompetent to stand trial,” or “guilty but insane.” Competency is generally regarded as a global decision – either you have competency (e.g., to stand trial) or you don’t. Finally, competency involves criminal law; by contrast, in my practice, when I assess someone’s mental faculties, it has direct bearing on civil matters, such as a person’s ability to make a will,  capacity to manage his or her finances, or to make medical decisions.

So what is capacity, anyway? I look at it as the ability to exercise informed choice or informed consent. What is consent? I like this:

“Consent is an act of reason and deliberation. A person who possesses and exercises sufficient mental capacity to make an intelligent decision demonstrates consent by performing an act recommended by another. Consent assumes a physical power to act and a reflective, determined, and unencumbered exertion of these powers. It is an act unaffected by fraud, duress, or sometimes even mistake when these factors are not the reason for the consent. Consent is implied in every agreement.”

For example, if I can make a decision to accept a steroid injection for my painful shoulder while weighing the possible benefits (pain control, reduced inflammation) and potential costs (possible infection, elevated blood sugar), and be able articulate how this cost-benefit calculus changes based on the choices I have available, then I am said to exercise informed consent – I have the capacity to decide one way or another. However, if I am unable to demonstrate that I can make this decision while keeping in mind these costs and benefits, then I am said to lack capacity and am unable to exercise informed consent. Instead, I may be able to give assentwhich is really just a way of indicating preferences, although not necessarily informed ones.

Dementia (a medical condition that older adults are at elevated risk of developing) is often associated with lack of decisional capacity.

A few myths or misunderstandings about capacity should probably be mentioned. I’ve cribbed some of the more relevant ones from this nice article here (my comments have been added):

Myth #1: If a patient makes a decision that’s against medical advice, then he or she lacks decisional capacity.

Of course, this isn’t true; having decisional capacity doesn’t prevent bad decisions. However, making bad decisions does tend to go along with lack of capacity – but they aren’t synonymous.

Myth #2: There’s no need to assess decision-making capacity unless a patient goes against medical advice.

This isn’t true at all, although unfortunately in practice it may turn out this way at times. For example, you may have a pleasantly demented person as a patient and he may be pleasantly giving assent every time you offer him a test, medicine, or medical procedure. However, when the patient begins to refuse life-saving medical procedures, capacity is suddenly brought up. Obviously, a provider should always be alert to capacity issues, regardless as to whether the patient is pleasantly compliant with medical advice or not.

Myth #3: Decision-making capacity is all or nothing.

Decision-making capacity is not all-or-nothing, it’s on a spectrum. Often clinicians talk about “diminished capacity,” and, moreover, when capacity is lacking to some degree, truly thoughtful clinicians will try to supply recommendations as to how to ameliorate or address capacity issues (e.g., with prompting or cueing, or memory aids.) Moreover, capacity is domain-specific; one can have diminished capacity in one area (say, in the area of independent living capacity) but be completely intact in another (say, such as the capacity to make informed medical decisions on one’s behalf).

Myth #4: Cognitive impairment = no decision-making capacity.

A person with dementia does not necessarily lack capacity, although it’s certainly the case that capacity issues are more often found in dementia sufferers than those without. Although it’s uncommon, I have in the past been referred to assess a person with dementia who I have found to retain decisional capacity in the area of interest, despite the diagnosis.

Myth #5: Lack of decision-making capacity is permanent.

A common cause of diminished capacity and cognitive impairment is delirium, which by its nature can fluctuate and also resolve (presuming the underlying medical cause is addressed). Moreover, dementia can be reversible (and thereby the cause for the impaired decisional capacity in most cases), such as is the case with dementia syndrome of depression.

Finally, state governments even recognize that capacity can be something that is lost and then regained at a later date – which may be one reason why California has the procedure of temporary conservatorship (which differs from permanent conservatorship).

Myth #6: Patients who have not been given relevant information about their condition lack decision-making capacity.

This, of course, is not true. An uninformed patient is not the same as a patient who lacks the ability to make informed decisions. If I supply you with incorrect information in order to (say) make an informed decision about buying a car, and then you purchase the car based on this incorrect information, that doesn’t mean anything about you – that means your car dealer might have been crooked!

Myth #7: All patients with certain psychiatric disorders lack decision-making capacity.

Myth #8: All institutionalized patients lack decision-making capacity.

These myths illustrate the principle that hard-and-fast rules about decisional capacity are often inaccurate. Capacity must be evaluated on a case-by-case basis. Dementia does not mean lack of capacity, and neither does the presence of a major psychiatric illness, whether one is hospitalized or not (and regardless of the circumstances of one’s hospitalization).

Myth #9: Only psychiatrists and psychologists can assess decision-making capacity.

In my opinion, a properly trained psychologist (typically a neuropsychologist, or, in the case of assessing capacity in older adults, a geropsychologist) tends to be best equipped to assess decisional capacity. However, capacity determinations can be made ably by anyone with proper training, although a trier of fact may find evaluations performed by physicians and psychologists more persuasive.

Psychologists use several standardized measures of capacity, typically to address the capacity for medical and financial decision making.  I’ve frequently used the Hopemont Capacity Assessment Inventory, which is a semi-structured interview (in other words, there’s a lot of room for limits-testing and follow-up questions built into an otherwise structured examination) that offers interviewees multiple vignettes (stories) about simple and complex financial and medical decision-making scenarios. After presenting  these vignettes, interviewees are then asked systematic questions about the costs, benefits, and choices laid out in the vignettes. Interviewees are then asked to apply their own values to these vignettes. Interviewees are then rated for their ability to accurately make use of these concepts (cost, benefit, and choice), and how they use their own values to arrive at their answers, and finally, whether they apply these concepts (and their own values) consistently in the answers that they provide.

A splendid book I have used frequently in my psychological practice is co-written by a team of experts convened by the American Psychological Association and the American Bar Association – entitled “Assessment of Older Adults with Diminished Capacity – A Psychologists Handbook” (the attorney’s edition can be found here).  I like it because it (properly) makes the issue of capacity assessment in older adults even more complex.

Like I said earlier, capacity must be determined on a case-by-case basis, taking into account not only the individual, but the nature of the decision to be made – again, capacity is domain-specific. The handbook offers advice for assessing capacity for various domains (or tasks), such as:

  • Donative or testamentary capacity (making a will)
  • Medical decision-making capacity
  • Sexual consent capacity
  • Driving capacity
  • Capacity to live independently

And this isn’t even an exhaustive list! Hope this (mildly disjointed) discussion was helpful. So, again, major take-home messages:

  • Capacity is not all-or-nothing, it’s not something you either globally have or don’t – capacity is on a spectrum
  • Capacity is domain-specific, you can have diminished capacity or substantially lack capacity in one domain, but retain it in another
  • The fact a patient has dementia, or has a major psychiatric illness, or is institutionalized, tells you very little about their decisionmaking capacity.

Behavior Management in Dementia Patients

We’ve done a number of posts about behavior problems in nursing homes. Nursing homes are challenging places for patients to live. Residents suffer from chronic, disabling illness, often with no hope of cure. They may have chronic pain, and about 50-70 percent of the residents may suffer from dementia. Patients are depressed, confused, and sick; this is a recipe for behavior problems. Patients scream and yell inconsolably, they may become assaultive (verbally or physically), they may refuse to eat, they may be tearful and depressed, all sorts of negative things can happen.

So how is behavior management done in the nursing home? Why do we do it?

The second question is easier than the first. We do behavior management (specifically non-pharmacological behavior management strategies) because the alternative is, of course, to throw pills at the problem. Nursing home residents are typically older adults – they are susceptible to falls and increased confusion. They are often less able to physically process drugs due, for example, to impaired kidney and liver function as a result of chronic disease. In short, drugs aren’t a very safe and effective way to control behavior problems in nursing home residents, and even when drugs work, sometimes the side effects are worse than the cure (see my previous posts on use of pharmacological means of behavior management here and here).

So, behavior management is a great idea! Does it work? It depends on a number of factors. First, if a patient is cognitively intact, a provider may wish to directly approach the patient and try to engage him or her in some behavioral contracting. Behavioral contracting is basically a sort of therapeutic “you scratch my back and I’ll scratch yours” deal that providers make with patients. For example, let’s say that Mr. Jones can’t seem to follow the rules against smoking at the local community skilled nursing facility. To encourage him to follow the rules, the nursing staff proposes that if he can go one month without breaking the smoking rules, he can check out an additional DVD from the recreation therapy staff office. Mr. Jones agrees to the contract.

Obviously, this approach doesn’t work very well with demented patients, particularly when the dementia becomes more severe. Because so many dementia patients also have problems with executive functioning, they may be unable to adhere to the terms of a behavioral contract. A provider who tries to implement a contract with such a person is potentially setting the dementia patient up for failure.

Just as behavioral contracting typically does not work well with individuals who suffer from dementia, neither does negotiating, pleading, convincing, or arguing. To work with dementia patients appropriately, it may be necessary to give up on the idea that these individuals have a meaningful level of control over their behavior. For many family caregivers and many paid caregivers, this is a huge shift in thinking to make. Even to this day, I hear nurses tell me, “oh, that Mr. so and so, I know you say he’s demented, but I’m convinced he knows what he’s doing” (and he’s doing it to annoy me!).

Once the care providers in a nursing home have made this shift in thinking, what should the next step be? Research tends to support two approaches that consistently help eliminate problem behaviors (such as aggression and agitation) in adults with dementia. The first approach is to increase the amount of pleasurable, enjoyable activities (so-called “pleasant events”) that this patient is engaging in. The second approach is to try to actively change, via trial and error, what might have been causing the behavior problem in the first place.

According to the “ABC model” (Antecedents, Behaviors & Consequences), every problem behavior in dementia patients is preceded by a predictable pattern of events, and a predictable set of responses then follow. If we can fairly precisely define the problem behavior in question, and carefully identify and change these “triggers” (antecedents) for the behavior, we can potentially reduce the incidence of the behavior. Finally, if we can change the environment’s response to the behavior, we can also reduce the harm of the behavior and its further occurrence.

Let’s take an example. Say that Judy is at home with her husband Sam, who has dementia. Sam exhibits sundowning behavior: every evening as he’s sitting in his comfy chair (where he sits after dinner, usually watching TV with his wife) he starts to get more and more confused and agitated and starts to go for the door, repeating the same worried-sounding phrase over and over again, “I need to go home, I need to go home!” Of course, he is home, and Judy exhaustedly goes through the same routine every night of trying to keep him safe from falls (as he keeps bolting to the door from his comfy chair) and convincing him that he is, in fact, home (which doesn’t seem to reassure him at all). Eventually, they both tire, and often late into the evening, Sam passes out in their bed. Judy is able to maybe get a few minutes to clean up the house before she collapses.

The “ABC model” approaches this scenario as follows:

ANTECEDENTS: Evening hours, after dinner, watching TV.

BEHAVIOR: “I want to go home,” ambulates unsafely, exit-seeking.

CONSEQUENCES: “You’re already home!”

So what do we do? From what we see above, Sam has a full belly, and he’s sitting in his comfy chair. It’s evening – the shadows are longer, the lighting is poorer. He’s probably getting tired. Judy could try not having the TV on, or the couple could sit in a more well-lit area of the house after dinner. Sam could try taking a nap earlier in the day to avoid confusion and agitation at night. None of these ideas are guaranteed to work, but by using trial and error, Judy and Sam can implement changes that might eliminate the triggers for the behavior.

What about Judy’s reaction? In the example, every time Sam complains about wanting to “go home,” Judy responds by trying to convince him that he is, in fact, already home, but this doesn’t seem to quiet him. Instead of challenging Sam’s perception, Judy could try to sooth things over: “all right, Sam, we’ll go home first thing tomorrow. You’re staying with me tonight. It’s a vacation!” Judy could try offering him a stuffed animal (or, if she has six thousand dollars lying around, a Paro Robot), or some other pleasant thing.

The key here is for Judy to track Sam’s behavior after she systematically makes these changes to his environment; this will allow her to determine what works and what doesn’t.

In my training as a geropsychologist, I have found that engaging a caregiver in this type of problem-solving exercise (usually in the form of brainstorming techniques), is by itself an extremely powerful method of getting a handle on behavior problems in the home.

Sometimes, though, behavior problems become so intractable that the use of medications to treat agitation and behavior problems is unavoidable. That’s okay! I am not anti-drug therapy. Medications can help, when used judiciously, when the “start low and go slow” rule is followed, and when polypharmacy is avoided at all costs.

Chemical Restraints and Consent

A brief followup to the rather lengthy post from a week or so ago regarding long-term care and medications.

Advertisements for pharmaceuticals is something we’ve all been exposed to for many years now. Not very long ago, pharmaceutical companies were prohibited from advertising directly to consumers. Now, of course, such advertisements are commonplace – everyone remembers the sparkly butterfly (Lunesta) and the bizarre Rozerem ads with the beaver and Abe Lincoln.

Some of the most popular, best-selling drugs are psychotropic medications. Three of the top ten drugs sold in 2011 were psychiatric medications: Seroquel and Abilify are second and third-generation anti-psychotics, respectively; Cymbalta is an antidepressant with some pain-control properties. All three are routinely used in the long-term care setting.

In this amusing link,, the first few ads feature Thorazine (aka chlorpromazine). Thorazine is a member of the so-called phenothiazine class of medications, one of the most popular and venerable of the so-called “first generation” anti-psychotics, and of the first-generation neuroleptic drugs, probably second perhaps only to Haldol in terms of its fame.

The story that we’ve all been told is that these drugs were revolutionary because they eliminated the need for physical restraints in psychotic patients, allowing them to live normal lives. In truth, of course, these medications simply substitute one form of restraint (physical) for another form (chemical).

Many patients freely choose and prefer to be on these kinds of medications because they do not want to experience a recurrence of the problems they had without them (e.g., psychosis). However, patients with severe dementia are likely unable to consent to the administration of such drugs. The problem is that administering medications is a much more sanitized route to restraining your demented patients than use of physical restraints – it appears much more humane; but it doesn’t solve the problem that caused the agitation, violence, and behavior problems in the first place. Solving that problem takes effort.