Neuropsychiatric Symptoms: A Caregiver’s Guide
Studies show that nearly every person living with dementia will eventually develop some form of Neuropsychiatric Symptoms (NPS), the non-cognitive, behavioral manifestations of dementia. Just as those living with Alzheimer’s and other forms of dementia may develop a range of impairments that affect their capacity to remember, communicate effectively and reason, they also may experience changes in mood and personality leading to troubling and disruptive behaviors.
It is important to be aware that behavioral changes can be prodromes, symptoms that begin prior to the onset of a diagnosis of a neurocognitive disorder. In fact, they can be the first symptom of dementia.
SYMPTOM TYPES
Jeremy Koppel, MD, AFA Medical, Scientific, & Memory Screening Advisory Board Member, describes common symptom types associated with NPS. They include:
Apathy — Sitting for prolonged periods, disengaged from normal activities, lack of expression of pleasure. This is the most common and enduring symptom, with nearly nine in 10 manifesting this, especially in late stages.
Depression — Enduring sadness or irritability, loss of interest, changes in sleep and appetite, thoughts of not wanting to be alive. It occurs in nearly half of people over the course of the illness. It may resolve and return episodically.
It is important to distinguish apathy from depression (apathy is loss of interest, depression is change of mood). Rates of apathy tend to increase as illness progresses; rates of depression tend to drop.
Irritability — Easily frustrated, persistent negativity, rejection of help, saying “no.” Up to a third of people experience this. It’s a persistent symptom that if left untreated will worsen.
Agitation and Aggression — Yelling, cursing; sometimes pushing, shoving, spitting, biting, especially when someone is trying to provide care. More than a third of people manifest this confrontational behavior over the course of illness. If left untreated, verbal abuse can progress to physical abuse.
Psychosis: Delusions — Preoccupations that someone is stealing or disloyal, intends harm; their home is not their own, relatives from the past are still alive or present, people are not who they say they are. Nearly half will experience psychosis. Peaks at the moderate stage of Alzheimer’s and gradually reduces in frequency in later stages. Occurs in many who are exhibiting violent behavior.
Psychosis: Perceptual errors and hallucinations — Hearing voices or people talking when no one is nearby; seeing people who are not present; seeing things that are not there. They are less common than delusions.
Motor activity and wandering — Inability to sit still, sitting down and getting up, pacing, wandering, shadowing loved ones; rummaging, collecting and hoarding. Nearly half will experience increased motor activity with greater prevalence during later stages.
Sleeping and eating disorders — Disrupted sleep, such as trouble falling asleep, going to sleep too early, reversed sleep cycles (sleeping during the day, up at night), attempting to leave the house or initiating daytime activities at night (dressing, eating, cooking), as well as decreased appetite. Experienced by most over the course of the illness. Both will increase in severity and frequency as the illness progresses.
TREATMENT OPTIONS
The first step in accessing an intervention is the engagement of a qualified dementia health care provider for a complete evaluation. This could be a geriatric medicine specialist, a neurologist or a geriatric psychiatrist.
Non-Pharmacological approaches
For mild cases, non-pharma approaches should be tried first: music therapy, aromatherapy, exercise or physical therapy, pet/animal therapy and, for some, psychotherapy. If these fail or if symptoms are persistent or severe, medications may be necessary.
Pharmacological approaches
All medications carry risks that need to be discussed and weighed against possible benefits. Dementia-focused providers, especially geriatric psychiatrists, may recommend medications from the antidepressant class (selective serotonin reuptake inhibitors, SSRIs) or from the atypical antipsychotic class. Though often effective, use of antipsychotics is generally a last resort and should be approached with caution, as these have been associated with an increased risk of death. Use of sedative hypnotics should generally be avoided as they often worsen confusion and cause falls.
Clinical trials
Experimental non-antipsychotic medication clinical trials are ongoing. Information about where these are offered and how to begin the process of enrollment can be found at clinicaltrials.gov.
CAREGIVERS NEED CARE
Although these behaviors—collectively referred to as NPS—contribute directly to caregiver stress and burnout, often they can be successfully addressed by working with professionals using a variety of intervention approaches.
Seek support, guidance and resources by contacting the AFA Helpline, staffed by licensed social workers trained in dementia care, available 7 days a week by phone (866-232-8484), text (646-586-5283) or webchat at alzfdn.org.
ABOUT THIS ARTICLE
This article is based on a brochure, “What Are Neuropsychiatric Symptoms? A Caregiver’s Guide,” written in consultation with Medical, Scientific and Memory Screening Advisory Board Member Jeremy Koppel, MD, co-director of the Litwin-Zucker Center for the Study of Alzheimer’s Disease, Feinstein Institutes for Medical Research. Interested in receiving a copy, please contact the AFA Helpline, at 866-232-8484, text at 646-586-5283, or webchat by clicking the blue and white chat icon in the corner of this page.
This article was adapted from a print version which appeared in AFA’s Alzheimer’s TODAY magazine.
