While hospice was originally developed primarily for patients with terminal cancer, dementia from all causes (including Alzheimer’s and Parkinson’s), is now the top principal diagnosis in hospice, accounting for one in five Medicare decedents utilizing hospice care in 2019. Patients with a primary diagnosis of dementia also experience the longest hospice stays, averaging 127.9 days compared to an average of 77.3 for all diagnoses combined.1
More than 90% of persons with dementia experience behaviors and psychological symptoms of dementia (BPSD) including agitation, apathy, depression, repetitive questioning, psychosis, aggression, sleep problems, wandering and various inappropriate behaviors.2 With dementia care now accounting for so many patients and patient days, it is important to consider whether hospice is delivering on its promise of dignity and improved quality of life for this population, particularly as it relates to management of BPSD.
Overall, the answer appears to be yes, but with some reservations. For community-dwelling dementia patients, experiencing hospice during the last month of life is associated with statistically significant improvements in multiple domains of care, particularly perceived overall quality of care, management of anxiety and sadness, and access to spiritual support compared to decedents who did not receive hospice care. However, this evidence suggests room for improvement because many domains, including pain management and dyspnea, appear only marginally improved by hospice participation.3 There are also growing concerns around symptom management in dementia care both generally and in hospice and palliative care settings.
In a recent presentation abstract published in the Journal of the Alzheimer’s Association, researcher Jacobo E. Mintzer estimated that 45% of hospice patients with end-stage dementia will experience agitation despite being treated with lorazepam, morphine, and atypical antipsychotics, totaling over 80,000 patients per year. He concluded that because agitation symptoms in hospice-eligible patients appear to be symptomatically and biologically distinct from those experienced by patients with moderate dementia, more tailored treatments are needed.4
The Current State of Pharmacological Intervention in Dementia Care
There have been a few studies that have identified the most prescribed medications under the hospice benefit since hospices were required to report this information to the Centers for Medicare and Medicaid (CMS) in 2014. Thus far, the most recent reports available cover prescribing trends from 2014 to 2016, a period in which the proportion of hospice admissions with a primary diagnosis of dementia increased from 14.8 to 19 percent.1,5 Across all diagnoses, 63.3% of patients were prescribed an opiate while 70.3% were prescribed a psychotropic. The most common psychotropic classes prescribed were:
- Benzodiazepines (60.6%)
- Antipsychotics (38.3%)
- Antidepressants (18.4%)
- Antiepileptics (10.2%)
Prescribing patterns for these medications are broadly comparable across principal diagnoses, but dementia patients had the lowest likelihood of opioid prescribing (57.5%), the highest likelihood of antidepressant prescribing (25.6%), and the second highest rate of antiepileptic prescribing (8.7%).6
Top Five Medications Used in Hospice (All Diagnoses)6
|Drug||Class||Percentage||Median Rate per 100 person-days|
More recent and detailed data sources are available for medications frequently prescribed to older adults with dementia. These should be broadly applicable to hospice given the fact that hospice pharmacy profiles typically reflect the care that has been provided to patients prior to the election of hospice services:
- A sampling of outpatient visits found that patients with dementia (PWD) were 3 times more likely to be prescribed 5 or more medications, with an average of 8 medications compared to 3 for people without dementia (PWOD). Approximately 85% of PWD were on at least one psychotropic medication (compared to 28% for patients without dementia) with top medication classes consisting of Alzheimer’s medications, antidepressants, anxiolytics, sedatives, hypnotics and antipsychotics. Compared to PWOD, PWD had 2.5-fold greater odds of receiving at least one highly sedating medication and a 1.9-fold greater likelihood of receiving a highly anticholinergic medication, with the most prescribed medications including benzodiazepines, gabapentin, antipsychotics, urinary antispasmodics and antihistamines.7
- A meta-analysis of 25 studies from 12 countries found that a third of nursing home residents with dementia receive two or more psychotropic medications and 12% receive 3 or more.8
- An analysis of 2018 Medicare Part D prescription claims of community-dwelling seniors with dementia found that 14% had 3 or more concurrent psychotropic medication for more than 30 consecutive days. The most common psychotropic polypharmacy class combination included at least 1 antidepressant, 1 antiepileptic, and 1 antipsychotic.9
Top 20 Drugs Among Community-Dwelling Older Adults With Dementia and Psychotropic Polypharmacy
|Rank||Generic name||Polypharmacy-days, %||Persons, %|
Pain, Polypharmacy and BPSD
The ranking of the top 20 psychotropic drugs most frequently associated with psychotropic polypharmacy in older adults with dementia9 raises serious questions about standards of care for this population. Nearly all of these drugs contribute to anticholinergic burden, influence serotonin, or both. This presents a heightened risk of serotonin syndrome/toxicity, which has been known as a contributor to BPSD for over two decades and may often be misattributed to disease progression.10 Anticholinergic drugs are also implicated in both the development of dementia and ongoing symptoms of BPSD, particularly including confusion, difficulty concentrating, agitation and memory problems.11 Anticonvulsants, systemic corticosteroids, sedatives, and anti-Parkinsonian medicines all have some potential to worsen BPSD.
It is also interesting to note that while the study authors included opioids in their analysis of psychotropic medications, only three opioids appear on the list. Even the most frequently used opioid, hydrocodone, is only ranked 13th overall with only 11.5% of the polypharmacy days. This suggests that opioid analgesics may be used less often and for shorter durations compared to other psychotropic medications in this population, which is consistent with the hospice prescribing data showing lower utilization of opiates in dementia compared to other diagnoses.6 Evidence suggests that pain remains underrecognized in patients experiencing dementia and can worsen BPSD. An Australian study published in 2021 applied a novel assessment tool leveraging artificial intelligence (AI) to assess pain and its correlation to the 12 behavior domains of the Neuropsychiatric Inventory tool. Nearly two-thirds of the patients were identified as having pain and almost half of those were assessed as having moderate to severe pain. Regardless of dementia type, the behavior domains most associated with pain were aggression and agitation (94%), irritability (70%), depression (60%), aberrant motor behavior (52%), apathy (40%), appetite/eating (30%) and hallucinations (22%).12 A recent cross-sectional, population-based study found that older Americans with dementia or cognitive impairment are significantly less likely to both report pain and receive pain treatment.13
Often, the medication profiles for persons living with dementia are a collection of medications to alter behavior and mood. The mechanism of action of these medications may impact the levels of one or more neurotransmitters in the brains and bodies of these patients and, when combined, can make BPSD worse including increased agitation. This is particularly true for medications affecting the central nervous system, including antidepressants, antiepileptics, antipsychotics, benzodiazepines, and nonbenzodiazepine benzodiazepine receptor agonist hypnotics. Many of these medications influence serotonin and may lead to serotonin toxicity, which is under-diagnosed and often confused with disease symptoms, particularly those associated with dementia and cognitive impairment.
Symptom management at the end of life can be complex. Hospice clinicians must often add and adjust medications due to disease progression and changes in functional status. At the same time, patients enter hospice care already taking a variety of daily medications from multiple prescribers. Hospice interdisciplinary teams are often wary of discontinuing these legacy medications, especially if they encounter resistance from patients and their family members. This often leads to polypharmacy and increased risk of adverse drug events, the symptoms of which may aggravate BPSD or be misattributed to disease progression. At the same time, there is growing evidence that pain is undertreated in dementia care and can manifest as various BPSD. Together, these circumstances often lead to a lower quality of life for dementia patients, potentially undermining the very purpose of hospice care. With dementia diagnoses now accounting for more hospice admissions and patient days, it is essential for clinicians to recognize the risks of psychotropic polypharmacy and consider more proactive pain management for this vulnerable population.
More From Enclara
- Forest or Trees? Overlooked Contributors to Troublesome Symptoms In Dementia Care
- Dementia Medications and Deprescribing
- Shark in the Water: Assessing Serotonin Toxicity Risk in Hospice and Palliative Care
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- 2021 Edition: Hospice Facts and Figures. Alexandria, VA: National Hospice and Palliative Care Organization. www.nhpco.org/factsfigures. (Note: This edition reports on hospice utilization for 2019. The proportion of dementia patients differed significantly from prior years in 2020 due to the impact of COVID-19, which limited hospice access to long term care facilities and resulted in significant mortality in the advanced age groups most likely to suffer from dementia from all causes.)
- Ma, Huixuan et al. “Clinical Practice Guidelines for the Management of Behavioral and Psychological Symptoms of Dementia: A Systematic Review With AGREE II.” Frontiers in neurology 13 799723. 25 May. 2022, doi:10.3389/fneur.2022.799723
- Harrison, Krista L et al. “Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life.” Health affairs (Project Hope) 41,6 (2022): 821-830. doi:10.1377/hlthaff.2021.01985
- Mintzer, J.E. (2022), Special Circumstances of Persons with Dementia and Agitation in Hospice Care.. Alzheimer’s Dement., 18: e064698. https://doi.org/10.1002/alz.064698
- 2015 Edition: Hospice Facts and Figures. Alexandria, VA: National Hospice and Palliative Care Organization.
- Gerlach, Lauren B et al. “Prevalence of psychotropic and opioid prescribing among hospice beneficiaries in the United States, 2014-2016.” Journal of the American Geriatrics Society vol. 69,6 (2021): 1479-1489. doi:10.1111/jgs.17085
- Growdon, Matthew E et al. “Polypharmacy among older adults with dementia compared with those without dementia in the United States.” Journal of the American Geriatrics Society 69,9 (2021): 2464-2475. doi:10.1111/jgs.17291
- Jester, Dylan J et al. “Prevalence of psychotropic polypharmacy in nursing home residents with dementia: a meta-analysis.” International psychogeriatrics 33,10 (2021): 1083-1098. doi:10.1017/S1041610220004032
- Maust, Donovan T et al. “Prevalence of Central Nervous System-Active Polypharmacy Among Older Adults With Dementia in the US.” JAMA vol. 325,10 (2021): 952-961. doi:10.1001/jama.2021.1195
- Atee, Mustafa et al. “Pain in Dementia: Prevalence and Association With Neuropsychiatric Behaviors.” Journal of pain and symptom management 61,6 (2021): 1215-1226. doi:10.1016/j.jpainsymman.2020.10.011
- Lanctôt, K L et al. “Role of serotonin in the behavioral and psychological symptoms of dementia.” The Journal of neuropsychiatry and clinical neurosciences vol. 13,1 (2001): 5-21. doi:10.1176/jnp.13.1.5
- Jaïdi, Yacine et al. “Reduction of the Anticholinergic Burden Makes It Possible to Decrease Behavioral and Psychological Symptoms of Dementia.” The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry vol. 26,3 (2018): 280-288. doi:10.1016/j.jagp.2017.08.005
- Wang, Jinjiao et al. “Pain and the Alzheimer’s Disease and Related Dementia Spectrum in Community-Dwelling Older Americans: A Nationally Representative Study.” Journal of pain and symptom management 63,5 (2022): 654-664. doi:10.1016/j.jpainsymman.2022.01.012