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.

We Can Build It… We Have The Technology

One thing is certain – over the next 10-20 years, regardless of what other economic or political events sweep the USA, this country will have far more older adults, as a proportion of the overall population, than we do now. This is sometimes referred to in the media as the “graying of America” or the “demographic tsunami” which has already been sweeping Japan and Europe.

On the one hand (as the linked article above accurately reports), members of this newer generation of older adults tend to be in better shape than counterparts of previous generations – and it appears that this trend will continue in the forseeable future; consequently the older adult of the future will be less likely to depend on long-term care than the older adult of today or yesteryear.

However – here’s the rub: we will be utterly groaning, bursting at the seams with older adults as a nation within the next few decades. Within the next 15 years, the number of people over the age of 60 in the U.S. will nearly double. By 2050, the numbers will nearly triple. That means that regardless of how much healthier the “baby boom” generation may be than previous generations of older adults and how much less prone to physical debility (and that’s also debatable, apparently), there will be much greater numbers of older adults requiring long-term care (as in skilled nursing care and assisted living) and even more older adults will require some sort of assistance in their home with basic activities of daily living (ADLs). So, while the proportion of the total number of older adults requiring nursing homes and intensive personal care arrangements may go down in the next 10-20 years, the overall number of older adults demanding nursing care will be skyrocketing.

And nursing care is absurdly expensive and getting more so. In California, nursing home beds at minimum fetch $60,000 per year and costs can go far north of that into the six figures. Hyperinflation of healthcare costs, for whatever the reason, has not excepted nursing homes (we’ll cover the challenge of affording nursing home care in an upcoming post).

So, with the costs so high and the “demographic tsunami” so clearly poised to swamp our system, what can be done? It’s worth imagining what the nursing home of the future will be faced with, and what they’ll need to do to accommodate these changes. Nursing homes of the future will be faced with patients with far more complex needs than the past – and that includes behavioral needs. Patients who make it into nursing homes today will be “triaged” to home care tomorrow so that nursing home beds can be saved for the neediest of the needy.

Long term care nursing staff, already working for one of the most heavily-regulated sectors of the US economy, generally have little time to spend providing and caring for patients’ psychosocial needs; tasks generally relegated to Recreation Therapy (RT) staff, volunteers, and the few-and-far-between mental health consultants who serve community facilities. So what are nursing homes to do? Modern long-term care facilities now offer cable television, and increasing numbers of nursing homes are offering wireless Internet capabilities to allow their increasingly-savvy residents to communicate with the outside world, but these kinds of technological innovations are cold comfort.

Some nursing homes have active “therapy dog” programs where residents are regularly exposed to animals for their well-recognized therapeutic purposes. Some nursing homes (particularly ones that subscribe to the “Eden Alternative” philosophy) even have animals that live in-house with the residents. Unfortunately, there are a number of issues with animals that make them impractical for use in many nursing homes in any widespread manner. First, there are the ever-present concerns about zoonoses (animal-to-human infection) and bites – no matter how vigilant a handler may be or how carefully veterinarian visits are documented, human error and the unpredictability of animals are always at play. Also, dogs and other animals need to be fed, toileted, cleaned, and with visitation therapy dogs need handlers to manage them – which make them a labor-intensive affair for an environment that tends to be starved for labor.

Meet the Paro Robot.

paro&daddy&shibataparo-robotic-healing-seal-2-1

What is the Paro? Specifically, it’s what the developer has called a “mental commit robot” – a robot designed to elicit feelings of relaxation and happiness in the user (as opposed to the more traditional use of robots; e.g., for accomplishing specific tasks). Initially, the developers attempted to create these therapeutic robots using cats and dogs as models. However, they found that despite the cat and dog ‘paros’ being sophisticated machines, people were much too familiar with dogs and cats – they had far too well-developed prototypes of these animals in their heads to be fooled by a robotic cat or dog simulacrum.  So the developers hit upon using the ever-so-cute baby harp seal as their model – and it worked, simply because average consumers in the industrialized world have never encountered harp seals in their lives (and so had no prototypes in their minds to compare to).

I first discovered the Paro Robot approximately two-and-half years ago after I had spent some time struggling with a difficult case of an older woman in my VA nursing home who had severe dementia. This woman was in her 80s, had severe chronic pain (from arthritis), some previous issues with depression and anxiety that predated her dementia, and now spent much of her day in her bed screaming inconsolably. As the staff psychologist at my VA nursing home, they looked to me to address this issue (psychiatric medications were also being tried). The only thing I noticed about her is that she quieted only when the therapy dog volunteers visited her – unfortunately these visits were few and far between. The Paro Robot seemed an ideal solution.

Although this woman died before I was able to make full use of the Paro Robot with her, I have since used it on multiple patients and have encouraged other staff to use it at our neighboring geropsychiatric facility in Menlo Park. Since then we have collected data that suggest the Paro Robot is indeed an effective intervention for use with agitated and distressed older adults. When offered to these (frequently demented) older adult VA nursing home patients, we found that they significantly calmed and brightened in their demeanor, and that use of the Paro Robot often resulted in psychotropic medications not being used with our patients – which is an outcome of enormous value in and of itself.

Detecting and Preventing Elder Financial Abuse

The ever-present threat of elder abuse and neglect is always a concern for professionals who work with older adults. Elder abuse can be physical, psychological, and financial. Like many other healthcare professionals, as a psychologist I am a mandated reporter: if I suspect an adult over the age of 65 is being physically abused or denied food, hygiene, or medicine, I must report my suspicions in a timely manner to my local county Department of Health (via Adult Protective Services or APS). Failure to do so could subject me to civil or criminal penalties. Conversely, the law protects providers who make reports in good faith from lawsuits.

In California, the primary law that protects older adults from abuse is the Elder Abuse and Dependent Adult Civil Protection Act (EDACPA), codified at Welfare & Institutions Code §§15600 et seq. There are many reasons to be particularly concerned about financial abuse when one is working with this population. Older adults simply by virtue of their age are at higher risk of dementia compared to the general population. Additionally, contemporary research has suggested one of the early warning signs of dementia is increasing episodes of poor financial decision making. Older adults tend to also have higher incidences of physical frailty, and therefore often depend on others for physical care. Combine all of these factors, and you have a recipe for financial disaster.

Often older persons or their families will see the need to hire a home health aide. Unfortunately, these services are particularly expensive if the home health aides are well-trained, licensed, and bonded. Costs can be reduced by hiring home health aides from less reputable sources; however, cost-cutting in such a manner can impart some significant risk.

In my career working with outpatient, homebound older adults, I’ve at times seen geriatric clientele paired with young family members, often a young grandniece, nephew, or grandchild. On the surface this may seem like a good idea, particularly when the younger family member is unemployed or out of school. Unfortunately, the same factors that make this younger family member ideal to “keep an eye” on grandpa or grandma (for example, the younger family member has lots of free time) may be the same ones that make them a risk: older adults, even close family members, may be an irresistible source of income to fund a younger family member’s drug or gambling addiction.

After a report has been made to adult protective services (APS), it’s sometimes found that the best plan for the older adult is to be admitted to long term care, such as an assisted living or a community nursing home. Typically, at this point, APS considers its work over. This doesn’t seem an unreasonable position to take; after all, once the older adult is under the care of a licensed facility that provides 24/7 care and supervision, the responsibility for safeguarding the welfare of the older person has shifted to the facility.

Of course, we all know that residing in long term care facility doesn’t automatically provide an older adult with iron-clad protection against abuse. I’m sure we’ve all seen the occasional lurid news story documenting the rare instances where nursing staff engage in overtly abusive acts, ranging from out-and-out violence to criminal neglect. However, this is in my experience an exceedingly rare event. Not only does the training and hiring process for nursing home providers tend to weed out abusers, it’s also not a particularly convenient environment for an abuser to commit their acts undetected by their fellow employees. Also, nursing homes are, without a doubt in my mind, some of the most highly regulated category of healthcare facilities in the country. Consequently, there is an enormous amount of oversight and considerable incentives for nursing homes to prevent and, if necessary, detect and respond to abuse by staff when it happens.

But what happens when a fellow resident victimizes a vulnerable older adult? This is a particularly sticky problem for a number of reasons. First, patient privacy is at issue here – how do you document that resident X seems to be targeting resident Y in their chart? Given the laws governing patient privacy (for example, HIPAA), this is impossible. Second, although nursing staff are technically responsible for the welfare of their residents, it’s impossible for nurses at a sweeping majority of facilities to be able to keep tabs on their residents all of the time. In the evening hours (what nurses call the “off shifts”) the number of nurses on the floor typically shrinks even further.

I’ll cover this particular issue in more detail in my next post. Suffice it to say, at many nursing homes an underground economy operates: even the most watchful nursing staff do not always detect residents covertly trading contraband and desirable items like cigarettes, food, candy (possibly even drugs and alcohol). What does it mean when one-half to three-quarters of the potential participants in this trade are demented or otherwise have diminished capacity? A number of extremely thorny liability and management issues are potentially in play here.

“Robot & Frank” (2012): A Review

There’s a small collection of movies out there that offer a particularly notable and meaningful commentary on older adulthood. “Iris,” a bittersweet drama depicting the famous author and philosopher Iris Murdoch’s decline from Alzheimer’s, is a favorite of mine. The film’s depiction of the difficulties (and moments of joy) experienced by her devoted husband were extremely moving. There is also the hilarious fantasy tale in Pixar’s 2009 film “Up,” which so wonderfully and humorously depicts many of the prejudices and difficulties posed by older adults in our culture while at the same time spinning a delightful and eye-popping yarn.

“Robot and Frank” is a 2012 movie directed by the newcomer Jake Schreier in his feature-length debut. It stars Frank Langella who plays an aging, crotchety semi-retired cat burglar named Frank, who seems to be suffering from some early-stage dementia, and is cared for by his well-meaning but often-annoying two children.

The twist to this story (aside from Frank’s criminal tendencies) is that it takes place in the near future, and features a “healthcare robot” that Frank’s son has purchased to encourage Frank’s independence in his home, and to maintain Frank’s health. At first, Frank is hostile to the robot, but soon warms to his presence, particularly after he discovers that he can manipulate the robot into helping him resume his life of crime.  (Peter Sarsgaard plays the robot, FTW. — BT) On the one hand, you might think, “clearly this is a bug in this robot’s programming; why would the manufacturers allow this robot to participate in criminal behavior with their care recipients?” However, the movie explains that the robot does its best to create an individualized care plan for the care recipient, and the highest priority for the healthcare robot is to maintain high functioning in their charges.

Gerontologists will tell you: one of the best ways to slow or prevent cognitive decline in vulnerable elderly is for older adults to remain actively engaged in meaningful activities. The robot initially tries to encourage Frank to engage in activities like gardening and hiking, but this doesn’t quite do it for Frank. So, what we end up with in this movie is a series of hugely entertaining scenes where the robot is trained by Frank to pick locks, taken along with him to do “jobs,” and becomes Frank’s business partner in some of his exploits. As a result, Frank gets his second wind, begins to eat better, displays more excitement for life, and for a time, seems sharper than he has ever been – but as a downside he attracts the interest of the local police.

Throughout the movie, however, we’re reminded that Frank is never really quite well. He seems to be constantly disoriented (misremembering that his son is no longer in college; forgetting that his favorite restaurant has been gone for years), and at the end of the movie when the dramatic (obligatory for a buddy movie) chase scene ensues, he displays a massive lapse in his memory that really demonstrates that Frank’s memory may be beyond remediation.

The brilliance of this movie is that it does many things all at once, both cinematically and as a commentary on aging and dementia care. “Robot and Frank” manages to embed a humorous and fascinating commentary on dementia caregiving within a charming, heartwarming science fiction “buddy movie” storyline. Caregiving for an older adult with memory problems is challenging as any son or daughter with a demented older adult at home can tell you – this movie provides a whimsical way of exploring the challenges. This is quality and timely social commentary in a very fun package.