One of the greatest challenges for patients with dementia and their caregivers is addressing behavioral and psychological symptoms of dementia (BPSD). BPSD are nearly universal, with around 90% of patients with Alzheimer’s disease and other causes of dementia experiencing BPSD at some point in their illness. These symptoms — depression, anxiety, insomnia, apathy, aggression, and hallucinations, among others — can be very distressing to patients and can even pose dangers to patients and to those caring for them. BPSD are associated with decreased quality of life, higher rates of hospitalization, increased risk of abuse and neglect, decreased survival, and increased depression and anxiety among caregivers. The economic burden is staggering: BPSD account for 30% of the cost of caring for people with dementia in the community.
Implementing a safe and effective treatment plan can be daunting. Behavioral and environmental interventions are probably safer and more effective than pharmacological interventions, but typically require an investment in human resources and customization to each patient’s needs. The evidence that pharmacological interventions are effective is mixed — and there are clear dangers, especially with atypical antipsychotics. Because dementia is progressive, BPSD may evolve over time, requiring reassessment of the patient and revision of the treatment plan. Caregivers must be supported, and attention paid to their emotional health and quality of life. In this brief review, I will describe best practices in the care of patients with BPSD.
Establish the cause of dementia
Most of the literature on the prevalence, diagnosis, and treatment of BPSD has been conducted in patients with Alzheimer’s disease. But the presentation and treatment of BPSD vary by etiology of dementia — and this is especially the case for Lewy body disease (LBD) and the behavioral variant of frontotemporal dementia (bvFTD). LBD often includes prominent psychiatric symptoms, especially vivid visual hallucinations, delusions, anxiety, and REM sleep behavior disorder. The psychosis associated with LBD can lead to prescription of antipsychotics, however, patients with LBD can be very sensitive to side effects of antipsychotics (e.g., parkinsonism) and so it is best to avoid antipsychotics and instead use cholinesterase inhibitors. The new onset of cognitive impairment and behavioral disturbance in patients aged 45 to 64 should raise suspicion for bvFTD, whose symptoms include verbal and physical aggression, disinhibition, apathy, and problems with appetite and eating (e.g., eating non-nutritive substances). Selective serotonin reuptake inhibitors (SSRIs), trazodone, and stimulants may be helpful for the BPSD associated with bvFTD. The possibility of delirium should be considered as well, since delirium can present similarly to BPSD and since the management of delirium involves identifying the cause of delirium and treating it.
Thoroughly assess all BPSD
As already discussed, the cumulative prevalence of BPSD is very high — around 90%. Individual BPSD are also quite common, and they often co-occur. The prevalence of the most common BPSD is:
- apathy, 49%
- depression, 42%
- aggression, 40%
- sleep disorder, 39%
- anxiety, 39%
- irritability, 36%
- appetite disorder, 34%
- aberrant motor behavior, 32%
- delusions, 31%
- disinhibition, 17%
- hallucinations, 16%
Other BPSD to keep in mind include wandering, refusal of medications or assistance with activities of daily living, and pathological laughing and crying (also known as pseudobulbar affect). I would also note that, though aggression and psychosis tend to get the most attention, apathy is highly prevalent, very impairing, and often quite frustrating for family members.
Each BPSD should be clearly characterized, including its timing (onset of symptom, duration, frequency), severity (dangerousness, distress, interference with patient care), antecedents (triggers for behaviors, other patterns), consequences (how caregivers respond, what’s been effective), and history (new behavior versus change in pre-existing behavior). I have developed a form that guides the staff of long-term care facilities through a set of questions to adequately describe all BPSD. Download a PDF of the form here.
Assessments should be culturally sensitive, since cultural factors may affect how patients and family members interpret the symptoms of dementia; may determine whether or not medical attention is sought; and may interfere with access to healthcare, e.g., because of a language barrier. LGBTQ persons with dementia and their caregivers may face discrimination when
seeking care; creating an environment of inclusivity is important when addressing BPSD in LGBTQ elders. Finally, patients with BPSD are especially vulnerable to self-neglect, neglect, physical abuse, emotional abuse, and financial exploitation, so we should maintain a high index of suspicion for elder abuse.
Identify and address reversible causes
All patients with BPSD should be assessed for dehydration, malnutrition, constipation, hearing impairment, vision impairment, and — especially — for pain. A staggering 64% of community-dwelling elders with dementia report pain that is bothersome, and 43% report pain that limits their activities. A visual analogue scale such as the Iowa Pain Thermometer can be used to assess pain in patients with mild-to-moderate dementia; the Pain Assessment in Advanced Dementia (PAINAD) scale may be necessary in patients with severe dementia. Treating pain in patients with dementia can be as straightforward as prescribing acetaminophen 1000 mg two to three times daily.
Other medical etiologies of BPSD include electrolyte disturbance, hypo-/hyperglycemia, acute kidney injury, end-stage liver disease, hypoxia, hypercarbia, hypo-/hyperthyroidism, deficiency of vitamin B1 or B12, sleep apnea, REM behavior disorder, stroke, traumatic brain injury, and urinary tract infection or other infections.
The patient’s medication list should be reviewed carefully to identify medications that could cause or exacerbate BPSD, which includes the following:
- anticholinergic medications
- opioids
- sedative-hypnotics
- steroids
- antiparkinsonian agents
Offending agents should be discontinued or, at least, their doses lowered. Patients with BPSD should be screened for alcohol and cannabis use and encouraged to stop.
Persons with dementia are still psychological beings, with emotional and interpersonal needs. Psychological factors such as boredom, loneliness, grief, fear, embarrassment, loss of control or autonomy, loss of dignity, lack of intimacy, and feeling like one is a burden to others could contribute to BPSD and should be addressed.
Implement behavioral and environmental interventions
If medical and substance-related causes have been addressed and BPSD still persist, a behavioral or environmental intervention may be necessary. The patient interventions with the best evidence of efficacy are: increased structured activities, music therapy, multisensory stimulation (e.g., Snoezelen), reminiscence therapy, and problem-solving therapy. The most effective intervention for families is providing support to family caregivers (e.g., through caregiver support groups). The most effective interventions for long-term care facilities are training programs for paid caregivers and dementia care mapping (a quality improvement process). There is emerging evidence for exercise, pet therapy (either simulated or live), and simulated presence therapy.
All of these interventions will require some investment of resources, e.g., staff training. Interventions should be tailored to patients’ and caregivers’ cultural backgrounds. Because no intervention is effective for all patients, an individualized plan should be developed for each patient and updated as circumstances change.
Reserve pharmacological interventions for dangerous or highly distressing situations
Medications for BPSD have generally found to have limited efficacy, e.g., the effect size for antipsychotics in the treatment of agitation or psychosis is approximately 0.16. The risks of antipsychotics are substantial, including death (most common causes are pneumonia and ventricular arrhythmia), falls, cognitive impairment, sedation, extrapyramidal symptoms, and stroke. The antipsychotics with the best evidence of efficacy are risperidone (0.25-1 mg/d), olanzapine (2.5-10 mg/d) and aripiprazole (2.5-10 mg/d); quetiapine and clozapine may have roles in the treatment of patients with BPSD due to LBD. If ineffective after 4 weeks, an antipsychotic should be tapered off. Even if it appears to have been effective, treatment guidelines recommend attempting to taper off antipsychotics after 4 months.
The alternatives to antipsychotics with the best (albeit modest) evidence of efficacy are antidepressants (citalopram, escitalopram, and trazodone; note that hyponatremia is a potential side effect in older adults); anticonvulsants (carbamazepine, but not valproate, which should not be used in patients with dementia); dextromethorphan; prazosin; and pimavanserin (for Parkinson disease psychosis). Memantine has not been shown to be effective for BPSD, and cholinesterase inhibitors are of little benefit for BPSD except in LBD. Sedative-hypnotics should be avoided. Stimulants could be helpful for apathy, but can have cardiovascular side effects.
Seek consultation
At the Wisconsin Alzheimer's Institute, through a grant from the U.S. Administration on Community Living, we have trained social services staff in the use of DICE, an evidence-based and structured approach to assessing and managing BPSD; the staff in turn use DICE to assist the caregivers of patients with dementia. DICE is an acronym for describe, investigate, create (a treatment plan), and evaluate (the outcome) — the steps in addressing BPSD.
In my role at the Wisconsin Alzheimer's Disease Research Center, I have used the academic detailing model to help primary care providers at the Prairie Clinic in Sauk City to care for their patients with dementia. Academic detailing is a peer-to-peer educational outreach model that seeks to improve patient care through teaching right in the clinical setting. Dr. Cynthia Carlsson and I have received a Wisconsin Partnership Program grant to extend this model (as well as DICE) to another rural primary care clinic in Richland Center and to an urban primary care clinic. The grant will also include new educational programs for medical students and residents in Internal Medicine, Family Medicine, Neurology and Psychiatry.
While caring for patients with BPSD can be challenging, we are in a position to reduce the suffering of patients and caregivers and to improve their quality of life.
About the author
Art Walaszek, MD, is a board-certified geriatric psychiatrist and professor of psychiatry at the University of Wisconsin School of Medicine and Public Health. He provides care to older adults with depression, anxiety, dementia, and other mental health conditions, and teaches others to do the same. Walaszek is Co-leader of the Outreach, Recruitment and Engagement Core at the Wisconsin Alzheimer’s Disease Research Center, and Public Health Pillar Leader at the Wisconsin Alzheimer’s Institute.
His recent book, Behavioral and Psychological Symptoms of Dementia, is available through American Psychiatric Association Publishing. It can also be purchased at amazon.com.
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