The Behavioral Challenges of Dementia and How to Manage Them

Published In Mental Health & Well-Being

October 21st, 2015

At the nursing home where I work, approximately 50% of the residents have some form of diagnosable dementia (which is now referred to as ‘major neurocognitive disorder’ in the current version of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders). Typically, it’s one of the two most common forms of dementia, e.g., Alzheimer’s disease or cerebrovascular dementia (or, as is often the case, some combination of the two). As anyone who has worked in long-term care can tell you, the implications of having a high incidence of dementia amongst your residents can be profound.

Not only does the presence of dementia tend to lead to a greater propensity towards medical issues such as recurrent delirium, infection and falls (to name a few), but the presence of dementia can also lead to some fairly dramatic behavioral issues. These problem behaviors are often called a variety of things by treating professionals – vague descriptors such as “behavior problems,” “behavioral issues,” or the old favorite, “agitation” are commonly seen in chart notes of these patients. The in-vogue clinical term currently is “behavioral and psychological symptoms of dementia,” which, although a bit wordy (we can use BPSD for short), really gets to the point.

As an aside, I once did a chart review of every resident at my facility, which comprises two long-term care units – I found that in the upper floor, about half of the residents had dementia. On the bottom floor – I found a fairly large discrepancy as they had a proportion approaching two-thirds! However, after briefly thinking about it, I came up with a very parsimonious explanation as to why this was the case – our first-floor unit (given that it has multiple points of direct egress to the outdoors) was equipped with a so-called wanderguard system, and a number of residents on that floor had been outfitted with RFID bracelets, which set off alarms for our nurses, to notify us when residents attempted to leave the building. In other words, BPSD (in this case, specifically exit-seeking behavior, AKA “wandering”) tends to strongly affect where we place our residents within our facility.

Common Symptoms of Dementia

So, here’s a somewhat-representative but-hardly-exhaustive list of more common BPSD symptoms which one might see in a long-term care facility, or, you may see in your own loved one or care recipient:

  • Wandering or “exit-seeking,” heading for exits, or wandering into inappropriate places. Sometimes, a care recipient will be determined to “go home,” even when they already are home (oftentimes what they think of as home may be their childhood home, or their home from years or decades ago).
  • Yelling or screaming Sometimes a care recipient does this because they are in pain, depressed, or anxious. Sometimes they do this because they may be bored and are lacking stimulation. Sometimes this is a result of being annoyed, say, if they are being dressed or bathed. Either way, it’s common for people with dementia to lose the ability to express themselves using language. So, this is one alternative for them (yell or scream).
  • Verbal or physical combativeness. In my experience, in BPSD, verbal or physical violence rarely occurs randomly or without any apparent triggers. Most commonly, our residents will be verbally abusive to staff or try to hit or grab them during ADL care (ADL = “activities of daily living”), that is, when a resident’s incontinence briefs are being changed, or when they are being assisted with a change of clothes, etc.
  • Sleep disruption. While not an enormous problem in and of itself, this very commonly-seen BPSD symptom can make managing other, more significant behavioral issues far more challenging. Sleep is a very learned behavior, and as one’s brain progresses through the stages of dementia, one of the learned habits that may tend to get disrupted is a normal sleep cycle. Care recipients may be up all hours of the night, and tend to sleep through the days. Since staffing at nursing homes tends to decrease in the nighttime hours, a resident who is wide awake and, say, engaging in exit-seeking behavior or inappropriate verbalizations (screaming, etc.) can become a low-grade nightmare from a management perspective. For family caregivers, the nightmare can be much more high-grade.
  • Sundowning syndrome.” Related to the above is so-called “sundowning,” which is almost universally-recognized by dementia caregivers (paid and unpaid alike), and refers to the phenomenon of dementia sufferers becoming more agitated, anxious, and active during the evening hours (e.g., the time when most of us are trying to wind down in order to sleep). Increases in other behaviors, such as exit-seeking, are common at this time. Many believe that sundowning (AKA “nocturnal confusion” or “nocturnal delirium”) is basically a sleep disorder that is closely linked to the brain damage that occurs in the brains of dementia patients.

Less commonly-seen forms of BPSD can include behaviors such as sexual inappropriateness (groping or making sexually inappropriate comments to staff or others, exposing oneself, etc.), hyperphagia or pica (compulsively overeating, or eating inappropriate things), and psychotic symptoms (e.g., visual or auditory hallucinations, delusions).

Why Do These Behaviors Happen and How Do We Address Them?

Nursing homes are challenging places for patients to live. Even if a care recipient is at home, they’ve undergone a number of significant changes in their lives. They may suffer from chronic, disabling illness, often with no hope of cure. They may have chronic pain. Dementia care patients and long-term care residents can be depressed, confused, and sick; they just feel bad – this is a recipe for behavior problems.

So how do we address these problem behaviors in our care recipients? How are these issues addressed in nursing homes, assisted living facilities, memory care units, and in the home? How are they best addressed (versus how are they typically addressed)?

Approaches for how BPSD is addressed can be broken down into two categories – pharmacological interventions (e.g., drugs) and non-pharmacological interventions (AKA ‘behavior management approaches.’) In terms of drugs, briefly, here is a nonexhaustive list of some of the kinds of drugs used to treat these behaviors:

  • Antidepressants such as the older tricyclic antidepressants and MAOIs, and more modern SSRIs (such as Celexa and Prozac). Although the effectiveness of such drugs on BPSD are modest, there seems to be a general consensus that use of SSRIs in treating BPSD can be helpful. Of all of the medication classes, I would hope that physicians look to this class of medications as their first line of treatment for BPSD.
  • Painkillers including narcotic analgesics. This includes over-the-counter medications like Tylenol, but also can include narcotic drugs like Vicodin or Oxycontin. The idea behind these medications being used for BPSD is that behavior problems may be caused by unaddressed pain symptoms. Oftentimes, when pain is properly treated, behavioral symptoms may decrease. Unfortunately, there are a number of side effects associated with these medications, of which their addictive nature is only one – opiate narcotics can cause mental fogging and sleepiness, and increase the risk of falls. They can also cause constipation. Even OTC meds like Tylenol or ibuprofen can be problematic for older adults as compromised kidney and liver function in some older adults may make use of these drugs risky.
  • Benzodiazapine “minor tranquilizers” (e.g., such as Valium, clonazepam, etc). Although medications like these are effective in treating anxiety and may be useful in calming agitated patients with BPSD symptoms, they greatly increase the risk of falls and confusion in older adults, and are generally avoided for this reason. They also are addictive, like the opiate narcotics.
  • Neuroleptic or antipsychotic medication. These include “first-generation” drugs such as haloperidol (Haldol) or Thorazine, or the now-more-commonly prescribed “second-generation” agents such as Risperdal or quetiapine. Of all the drugs prescribed to treat BPSD, the use of this class of drugs is by far the most controversial. While these are often the first line of treatment for physicians when faced with serious behavioral problems in their patients, they are arguably not particularly effective when weighed against their fairly profound side effect profile. They can lead to increases in confusion, falls, and even more disturbingly, profound metabolic side effects (increased weight gain, diabetes) as well as increased risk of premature death from stroke and other causes. In 2003, the FDA issued a so-called “black box” warning to caution against their off-label use in patients with dementia. Yet, they are still used for this purpose as of today.
  • Dementia medications (e.g., Aricept, Namenda). There is some data to suggest that the use of the medication aricept (donepezil), which is one of the two only FDA-approved medications for dementia, is effective in reducing BPSD. This may be the case with namenda (memantine) as well (a drug which also is used to reduce the progression of dementia), for similar reasons. The idea here is if you can slow, stop, or possibly even reverse some of the underlying cognitive impairment that drives the BPSD, the behavior issues decrease.

There are a number of other medications that can be used to treat BPSD. In all cases, I think it’s fair to say that at best, these medications can be modestly effective when weighed against their side effect profiles. In many (perhaps most) cases, these drugs do not solve the problem – they just provide the proverbial “band aid.”

Why is that? Because BPSD is not a random thing. BPSD is not analogous to, say, seizure disorder, where underlying disease causes behavior that truly *does* make no sense, such as when one is in the throes of a convulsion and the body jerks and moves with no apparent rhyme or reason. If you watch a person with dementia carefully enough, it’s not too hard to discover that BPSD more often than not is the result of unmet needs, environmental triggers, or unexpressed emotions.

What’s our job as behavioral specialists, nurses, care providers, and caregivers? Our job is to figure out what the underlying triggers or problems are, and address them!!

In my next installment, I’ll explore, in some detail, the best, evidence-based approaches for BPSD from a non-pharmacologic perspective, giving you some guidance as to how you can approach this issue with your client, patient, or loved one.

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