“BPSD include agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. It is estimated that BPSD affect up to 90% of all dementia subjects over the course of their illness, and is independently associated with poor outcomes, including distress among patients and caregivers, long-term hospitalization, misuse of medication, and increased health care costs.” – Frontiers in Neurology Behavioral and Psychological Symptoms of Dementia J. Cerejeira,1,* L. Lagarto,1 and E. B. Mukaetova-Ladinska
BPSD: Be Patient, Synapse Disrupted
Under the umbrella of BPSD, there are many unpleasant expressions of emotional distress described in one-word terms that are either too broad or too narrow to accurately characterize a person’s “behavior”, especially to a family caregiver who has to put these behaviors in context of relationship, personality, and their own “feelings”. Indeed even paid caregivers, healthcare professionals, friends, acquaintances, and strangers can find themselves navigating through emotional minefields, afraid of stepping on a trigger that has no basis in rational thinking.
The Three A’s
Apathy, anxiety and agitation are some of the most common behavioral challenges in dementia.
Through the lens of a family caregiver, BPSDs can feel extremely personal. Anxiety and agitation sometimes have a sudden, insidious onset.. or increase in severity in gradual, subtle ways that only those closest to the person with dementia would recognize. Some family members might regard a woman who has always been “a worrier” as now having escalated anxious behaviors like sleeplessness, repetitive questioning, and an angrier response to a dissatisfying outcome. In this case, she is still herself… only moreso.
Other times, the opposite is true. A man who has always be gentle and easy going may react with abrupt, violent mood swings in response to “nothing”… or for no identifiable reason. Delusional thinking and hallucinations are commonly experienced BPSDs, and are equally impossible to rationalize.
Apathy is a close cousin of depression, and is a phenomenon that can feel hopeless and helpless to a caregiver who is dealing with a poorly motivated individual. It is incredibly hard to help someone who doesn’t want- or doesn’t try to- help him or herself. Apathy is frustrating and confusing for caregivers, and frequently leads to a passive slide toward dependence.
Pharmaceutical Solutions Run Amuck
The problem with identifying psychological symptoms and then attributing them to psychological states is that they tend to box symptoms into separate categories, and then treat them as siloed conditions. For example, depression has been one the most largely prescribed diagnosis for pharmaceuticals over the last 30 years. Anxiety is now a widely reported condition among children. There is a rush to alleviate symptoms with pharmaceutical agents that change, enhance, or diminish neurotransmitters in the brain. This cannot be without consequence or repercussions, especially in a neurologically fragile brain.
Depression, apathy, anxiety, and agitation are not always “diagnoses”- they are symptoms. Symptoms are the expression of a disease process or abnormal condition in need of repair or support- not masking.
BPSDs are part of the dementia disease process. They are not stand-alone conditions and generally respond poorly to medication. The trick, therefore, is to look past the symptom to the underlying network.
It’s back to basics- an examination of the ground level network of brain function. It requires going back to the development of each individual and trying to determine who they were then and who they are now when they can’t exactly tell you. It’s considering life changing events, lifestyle habits, and highly personalized preferences for sensory input and motor output. It’s even helpful to examine the genetic predispositions and cellular function for optimization of nutrition and the environment. There is far more to discover and support for the treatment of BPSDs than experimenting with medication- which can be more dangerous than the behavior itself .
To be clear, pharmaceuticals are, in many cases, a godsend. Let’s not discount the positive effects that medications can have on severe, desperate cases where self-harming, aggressive, or suicidal ideations can have serious consequences. But in times of relative calm, where there is time to experiment with the environment, external forces, and internal preferences, there is a case to be made to wait on pharmaceutical intervention until all other options have been trialed- at least the ones that are realistic for caregivers to deliver.