Behavior Management for Dementia: The STAR Program

Behavior Management in Dementia and Linda Teri’s STAR program

So I think at this time I’m going to get briefly away from my current fixation on gerontechnology and gadgets and instead focus on something that’s been happening at my day job at the VA. Over at my job site we’ve instituted something called the “STAR-VA” program, which is based pretty closely on Linda Teri’s STAR and STAR-C programs (btw, STAR stands for Staff Training in Assisted living Residences).

Dr. Linda Teri’s STAR program has been trialed extensively at assisted living facilities (ALFs, as they say in the biz), nursing homes and also with family caregivers (the STAR-C program) and has been found to yield exceptionally good results. As I indicated above, it has now been ‘ported’ to the VA and although the data is somewhat preliminary, it appears that STAR-VA is an extremely effective non-pharmacological approach.

What is the STAR program? Well, you can find out by purchasing a kit over at http://depts.washington.edu/adrcweb/STAR.shtml. Or, you can get hired by the VA as a nurse or psychologist, work for a VA Community Living Center (CLC, which is VA-speak for what we all know of as skilled nursing facilities, or nursing homes), and get trained in STAR-VA by their ongoing VA Central Office (VACO) training program. Or – you can listen to my very brief overview and commentary here (although that doesn’t substitute for the above – but will give you a sense of things). I have received the STAR-VA intensive training myself, as have my colleagues at the VA facility where I am employed.

Very briefly, the STAR program is designed to address what is an endemic problem in nursing homes and ALFs, specifically what is called “behavioral and psychological symptoms of dementia” (or BPSD for short) as the technical term currently in vogue, but also often called things like “agitation” or “behavior problems.”

A representative kind of behavior that the STAR program is designed to address is a problem that’s consistent and chronic (as opposed to a one-off behavior), takes place at reasonably consistent times, and isn’t the result of an unstable underlying medical condition (e.g., such as what you might see in a delirium). A prototypical behavior is “resistiveness to care,” such as when nursing staff (typically nursing assistants) are cleaning a patient, e.g., “ADL care.”

Imagine that you’re a patient in a hospital and you have trouble walking, controlling your bowels and bladder, and require assistance to keep yourself clean and toileted. Now imagine that you require assistance from other adults (nurses) to clean you every time you have a bowel movement or need to pee. Imagine how difficult (e.g., embarrassing, anxiety-provoking, and even somewhat demoralizing) that might be!

Now imagine what would happen if you were in the same situation, and you had *dementia.* Imagine you didn’t know where you were, and how you got there. Imagine that you’re lying in a bed, confused, and all of a sudden strangers come into the room and start squawking at you and saying unintelligible things, and start pulling off your pants and grabbing at your private area.

What would *you* do?

In many cases, these patients become aggressive, will yell, scream, physically resist, and at times try to hit nursing staff. Staff will respond by trying to reason or sweet-talk the patient. They may give “time outs” (leaving the room and coming back later, hopefully when the patient has calmed down). They may medicate the patient with pain pills and/or psychiatric medications. Also, in this situation I’ve seen nursing make use of multiple staff members (ostensibly to protect the staff giving the care from physical injury). Very frequently, these interventions either don’t work or make the problem behavior worse.

How do psychologists help with these problem behaviors in dementia?

In community nursing homes, where psychologists are typically reimbursed by Medicare, and the traditional “roving consultant” model applies, psychologists are restricted to being reimbursed for largely what is direct care services only. That is, they are reimbursed for seeing patients on a 1:1 basis for psychotherapy or to provide psychological assessment. Although there is a category of “behavior management” services that psychologists can be reimbursed for, it still requires the psychologist to be seeing the patient and only reimburses for 2-3 sessions at most.

This is not a very effective model for delivering effective behavior management approaches in residential care facilities where dementia is frequently a presenting issue.

We are not hamstrung by fee-for-service restrictions on care at the VA, which is fortunate, because I know as a geropsychologist with a decade’s experience in this field that the best way to address behavior problems in dementia requires approaches that embody the following:

  • The approach must be staff-driven. At best you’ll likely only have one psychologist available for an entire nursing home or ALF, who is only there part of the day or week. Therefore, all staff must be prepared and empowered to offer effective behavior management techniques on a 24/7 basis.
  • The approach must be interdisciplinary. Behavior problems are not just a “psychology problem” or a “nursing problem.” Older adult residents at ALFs or nursing homes interact with a wide variety of staff from janitors to food service to physicians and et cetera. Behavior management is a team effort!
  • The approach requires an intense focus on staff education and even a “cultural shift” in how dementia patients are looked at and cared for. Dementia is a disease unlike any other because it affects how patients see and understand the world and interact with others, it affects everything. It has no cure. There is no effective treatment that can restore people to normal functioning. It requires lifetime management for the sufferer. In order to provide the most compassionate and effective care, staff need to understand, appreciate, and as best as possible, empathize with the plight of these patients.

So, given the above, what is does the STAR approach entail? The STAR program has within it four distinct elements which embody key principles and approaches:

  • The ABCs of Problem Behaviors. This of course refers to the old “Antecedents, Behaviors, Consequences” model of looking at behavior problems in dementia (this is also a model that behavior analysts use to address behavior issues with developmentally disabled individuals, as an aside). An example of a simple “ABC card” is here. In working through this ABC model, where staff carefully define the behavior problem, look at the Who, What, When and Where of a behavior, and look for its triggers and consequences, staff can then find ways to alter the contingencies that may be maintaining the behavior issue, and ultimately, change it. In encourages staff to look at behavior problems in dementia as a “detective work” problem (since dementia patients typically can’t tell you what the problem is).
  • Increasing pleasant events. As I’ve worked on the STAR-VA program, I have found that this is a critically important piece – namely, that behavior problems in dementia patients becomes much less likely when they are regularly exposed to personally meaningful pleasant activities. In an unrelated aside, interestingly, a tried-and-true method for treating depression in intact adults was pioneered by psychologist Peter Lewinsohn, so-called “pleasant events therapy.” In the same way that systematically increasing exposure to pleasant events can result in remission of depressive symptoms, it can also result in decreases in behavior problems in dementia – almost as if these behavior problems are how dementia patients tend to express their distress!!
  • Promoting effective communication skills. Dementia patients have problems with language. They may have trouble expressing themselves verbally, or understanding language, or both. That means for staff to stand the best chances of having themselves and their intentions understood, they need to communicate with their patients differently. They need to SLOW DOWN when they speak. Speak clearly and in short, simple sentences. They need to pay attention to their nonverbals – because with dementia patients, it matters as much (and frequently more) in terms of how you say things as much as what you’re saying.
  • Realistic expectations. Of the four STAR principles, this one is probably the most purely educational in nature, and in my opinion, one of the most critically important. For caregivers to be in the position to interact calmly and compassionately (and therefore, the most effectively) with residents who have dementia, they will need to have the most accurate understanding possible of what exactly is the matter with their patients. What is a sign that a staff member does NOT have a realistic or accurate picture of a dementia patient? When a caregiver says, “oh, they have selective memory.” Or “they are doing it on purpose.” Or “they know what they are doing.” Obviously, these are not helpful ways to look at our dementia patients. Realistically, when dementia patients act out, forget things, and perhaps are even aggressive or combative, we know it’s because their brains are sick and not working properly. If we understand things thusly, then we are much more likely to react calmly and compassionately to them then to take it personally.

In future posts, I’d like to talk more about the STAR program components in detail.

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Smart Homes for Seniors

So in doing some reading about sensor technology and smart homes I encountered yet again some issues about ethics and technology acceptance both in older adults and in general.

Backing up a second – the future, of course, is already here when it comes to technology. We carry around these things called “smartphones” which contain within them technology that easily eclipses the wildest imaginations of people just a few decades ago (puts Gene Roddenberry’s communicator device thingies to shame). We’re all instantaneously connected to each other now with social media, Twitter, Facebook, etc. Disruptive technologies like AirBNB and Uber are fast-becoming a feature of the landscape.

With all of these technologies we’ve traded a portion of our privacy in exchange for what is in many cases a whopping dose of utility. This is the whole point of so many of these disruptive technologies. Imagine 20 years ago the idea of more or less offering up your apartment for short-term rental to a bunch of strangers using AirBNB, or sharing your personal life via daily updates over social media, or advertising even your garage sale over Craigslist for the world to see?

So in just the last few year alone, privacy has become really a commodity that we’re willing to trade in order to receive concrete benefits in return. (I’ll leave to the side the question of government officials essentially forcibly taking your privacy away via electronic snooping – which I consider a different animal entirely).

This takes us to the question of a potentially very useful technology for a population that, as always, is near and dear to my heart – older adults. The technology in question, broadly speaking, is sensor technology, and typically networked sensor technology (because what good are sensors if you can’t collect and manipulate the data in real-time?). Think positional sensors, such as geotagging, bed alarms, chair alarms. Think movement, such as accelerometers and zone alarms. Think physiological sensor technology, such as heart rate and respiration.

Now think about the real challenge facing us when it comes to the coming” demographic tsunami” that I’ve spoke of repeatedly in past blog posts. What seems to be increasingly clear about this wave of Baby Boomers that are currently beginning to retire and getting old is that they will be faced with a historic deficit of residential care options, particularly long term care, but also assisted living – but on the other hand, may not need these options nearly as much as previous generations due to advances in this particular cohorts ability to maintain their physical condition. This means they’ll be older, physically healthier (and therefore may not need nursing homes), but even if they need them, nursing homes and assisted living facilities will be expensive and harder to find.

This is where technology comes in. Just focusing on sensor technology – lets say my mother (who is getting a bit older) develops dementia. But, she strenuously wishes to stay in her home and remain independent for as long as possible – as do I. So I make some purchases. I outfit her oven, stove, and her faucets with sensors and shutoff systems (e.g., for example, so that if she leaves the stove on and forgets about it, it will shut off automatically – or I can do it remotely myself). I somehow tag mom (with wearable RFID tags, somehow) and set up monitors in various rooms to track her positions and give me real-time updates. I enable a perimeter alarm to let me know when she leaves the home. I give myself remote access to lighting and power within the home. I enable administrator access through my iPad which I carry around with me all the time.

There are a number of products which piece together these functions and can be enabled right now with some minimal know how and configuration, although many of these systems right now are not designed or enabled with older adult care and monitoring purposes in mind. However, there are now technology startups (such as BeClose (www.beclose.com) and Lively (www.mylively.com) which offer products tailored for elder care. Additional useful tasks these integrated, tailored systems can offer is biometrics (e.g., heart rate, respiration, step counting – think FitBit for seniors), which is valuable data that can be fed back to an older adult’s physician. These systems can also offer essentially what amounts to predictive analytic modeling of behavior – e.g., for example after a system observes a senior in their home for a given amount of time, the system can then tell the user where are the most well-traveled areas of the house (and therefore the parts of the house than need the most attention in terms of maintaining safety and livability).

These developments are completely exciting. This means that any number of adults alive today can now realistically expect to be able extend the time they’ll be living independently within their own homes significantly beyond what’s currently the norm. This could spell a reduced need for expensive facility-based care (such as skilled nursing homes or assisted living facilities) and also may provide for reduced costs of facility care as well (the as-yet-unrealized “smart nursing home” of the future).

However, technology positivism should always be tempered with some realism. First of all, there is no one-size-fits-all technology fix for any problem, and that always goes double (and then some) with older adults, who are inherently a far more diverse group than their younger adult or child counterparts – any technology solution to a “problem” of aging or dementia-related issue needs to be carefully tailored and individualized to account for specific functional, cognitive, and sensory changes in older adults.

Also, with monitoring and sensor technology comes ethical issues. How monitoring systems are deployed and used, how consent (always a tricky issue with the cognitively impaired) is navigated, all of these issues come with ethical and moral pitfalls. Moreover, older adults are by their nature more suspicious of monitoring and sensor technology than their younger adult counterparts, although their acceptance of monitoring and sensor technology tends to be tempered by their discomfort with monitoring depending on 1) who is doing the monitoring (e.g., family, physician, government) and 2) the level of invasiveness or ‘granularity’ of the monitoring (e.g. video and audio, audio only, or just positional?). Also, acceptance of monitoring is greater when, for example, an older adult is assured they are not being monitored in the bathroom. Which is tricky – because bathrooms are a frequent, if not predominant location / source of falls and accidents for older adults in the home.

I remain, of course, a gerontechnology booster. If I ever find myself in private practice, I imagine that gerontechnology consulting for in-home caregivers and crafting personalized solutions will be a big part of the work I do – and I’m excited, because the upside potential is clearly huge!