Having been diagnosed with Parkinson’s disease (PD), Jim was living peacefully at home with his wife. Suddenly, he had a change in cognition and began exhibiting confusion and stress behaviors that were described as aggressive. His wife called 911 hoping for help, but instead there began a cascade of mismanagement, complications and challenges.
The emergency room (ER) indicated that they did not have an inpatient bed for Jim but could send him to a specialized psychiatric facility instead. The family, desperate for answers, agreed. Jim was transported to a psychiatric hospital for what they called “stabilization,” and even greater challenges began. The family was not permitted to visit him and, although they called daily, they were given no opportunity to provide input and only minimal updates on his care for more than three days.
During this time, Jim was physically and pharmacologically restrained with high dose antipsychotic medications that are generally contraindicated for those with Parkinson’s Disease Dementia (PDD). Instead of helping his symptoms, he ended up unconscious and was found on the bathroom floor barely breathing, before being again sent to the ER.
While in the hospital, Jim faced continuing challenges. The medical staff showed a lack of understanding of PD, dementia care, and treatment. He was sent to the hospital for stabilization but had a team with no understanding of how to operationalize this. When the care management team arrived, he was found confused, in bed supine, in 4-point restraints.
No one had evaluated the need for restraint use, or posed the idea of trying less restrictive measures. The hospitalist sought input from the care management team about how to treat such patients and what medications were recommended. The hospital had no geriatric psychiatrists on staff and the nurses had limited understanding of non-pharmacologic and non-restraining measures to manage and redirect stress behaviors. The care management team was able to provide education, changing the course of care and treatment for the better.
Training Must Increase
This is just one of many stories of mismanagement for those with PDD and more complex dementias. Sadly, many nursing and medical students, residents and physicians are not trained on complex dementias and lack the opportunity to interface with these patients, as the hospital is not an ideal environment for those with dementia and all efforts are made to prevent hospitalization unless necessary.
But this needs to change because PD is no longer life limiting, considering the now-available diagnostics and therapies that extend patients’ lives. PD is the second-most common neurodegenerative disease in the United States, with nearly a million sufferers.
‘Dementia is not a normal aspect of aging and people with dementia can experience a wide variety of symptoms and stress behaviors.’
We need to do better as healthcare providers to create dementia-trained and prepared environments, as the number of people with PD is expected to rise to 1.2 million by 2030 (parkinson.org). According to the Parkinson’s Foundation, about half of those with PD will be affected by mild cognitive impairment, and the NIH found that 80% of Parkinson’s disease patients who survive for more than 10 years will develop PDD.
Dementia is a word that is often used incorrectly, as it is not a diagnosis but an umbrella category for many diseases that effect cognitive and behavioral abilities and interfere with a person’s ability to maintain their activities of daily living (WHO). Anyone working in aging life care understands that dementia is not a normal aspect of aging and people with dementia can experience a wide variety of symptoms and stress behaviors.
Some dementias are more challenging to manage, such as PDD, dementia with Lewy bodies (DLB), frontotemporal dementia (FTD), and Creutzfeldt-Jakob disease (CJD). Understanding and using proper non-pharmacological techniques is critical for proper management of these complex diseases. Many individuals have behaviors that require significant intervention and medication management, which existing service providers and congregate care settings are not necessarily staffed nor equipped to manage.
Consequently, many people are inappropriately sent to hospitals for psychiatric stabilization, while others are refused admission to care communities once they have exhibited a challenging behavior, agitation or aggression. These individuals are essentially blacklisted from care communities based on progress notes that often incorrectly state aggressive behavior instead of specific stress behaviors due to mismanagement by clinicians and/or temporary delirium.
Families are left struggling to manage individuals at home or forced to pay for supplemental private duty care as a condition of assisted living admission. Others are forced to go the psychiatric hospital route before being considered by assisted living communities, which often creates additional challenges for these individuals and their families.
Many also face challenges paying for care or finding Medicaid placement, as long-term convalescent care support is not covered by Medicare or private insurance and is therefore costly. Many often have to pay out of pocket for memory care or assisted living. Even with some entitlement programs, such as VA Aid and Attendance benefits, many individuals struggle to pay for care or even work with an eldercare attorney on a Medicaid conversion due to cost.
Changes That Could Help
Our current healthcare environment is not dementia-friendly and Medicare and Medicaid coverage do not supporting the expanding dementia population and their care needs. The Guiding an Improved Dementia Experience (GUIDE) Model is a new voluntary, nationwide model that began on July 1, 2024, and aims to better support people with dementia and their unpaid caregivers. The program will offer a Care Navigator who will help families access GUIDE and non-GUIDE services and supports, including clinical and non-clinical services, through community-based organizations. The primary goal is to reduce dementia Medicare and Medicaid expenditures by helping people remain at home and lessening the need for hospitalization, emergency department use, and post-acute and long-term nursing home care.
‘Standards should be implemented for memory care and assisted living to mandate more specific dementia and Parkinson’s education.’
This program, however, has flaws due to a lack of input from true dementia specialists. None of the care navigators are dementia specialists, instead they are from homecare companies, hospice organizations and acute care centers, which do not routinely navigate dementia challenges, which will create a challenge. Individuals working in this field and managing this population should be involved in this program. Otherwise, this program will have limited effectiveness and fail to remedy the lack of understanding of this population’s needs. The Aging Life Care Association, as well as other trained clinicians should be used for further program development and as care navigators, because knowledgeable care managers are experts in these areas.
Broader changes are also needed. Standards should be implemented for memory care and assisted living to mandate more specific dementia and Parkinson’s education—instead of general programs based on Alzheimer’s disease—and to prevent discriminatory admission and discharge practices. Moreover, all acute care settings should be mandated to have a dementia response team that is prepared to understand dementia and behavior management, and that can help with stabilization in an effective and dignified manner. Based on the demographics of older adults, and cases of dementia nationwide, this is warranted.
Dementia psychosis is a medical emergency and should be treated as such in acute care settings. When an individual comes into the hospital with any other emergency—stroke, trauma, cardiac arrest—a specific response team is activated and begins specialized treatment that follows critical timelines. For challenging behaviors and psychosis caused by dementia, the same approach should be taken by crisis intervention, emergency response teams, and acute care centers so that these individuals receive dignified and appropriate care.
Each acute care center should be required to have geriatric psychiatrists as a part of the onsite dementia team to not only support care, but to also educate staff and create dementia-friendly and supportive environments. A referral to community-based aging life care management should also be part of the discharge plan.
For more information on how to support dementia care, visit https://www.eldementals.com/post/planning-for-those-with-dementia.
Karen M. McPhail, BSN, MSN, RN, LALFA,CDP, CCM, CCTC, is an aging life care manager and the CEO of Eldementals in Great Falls, Va.
