Providing care for loved ones with cognitive decline and dementia is a challenging and heart wrenching undertaking. As conditions advance, the decision of transitioning loved ones to long-term care facilities exerts an emotional burden on both people living with the disease and their caregivers tasked with the decision.
Given the option, 90% of individuals want to stay in their own home through end of life – a concept defined as aging in place or the ability to live in one’s own home and community safely, independently, and comfortably regardless of age, income, or ability level. However the myriad and well documented challenges of caring for those with neurocognitive decline are often barriers to people with dementia remaining at home safely. From concerns regarding loved ones’ ability to perform activities of daily living, challenges with communication and altered perceptions, to risks of personal injury from cooking hazards, wandering, and difficulties navigating the home environment, these safety and health challenges place burdens on caregivers that only increase over time.
As over three-quarters of the care provided for these individuals in the home is supplied by friends and family, caregivers are often impacted by familial, cultural, and societal pressures to have few boundaries between their personal life and their caregiving responsibilities. As a result, caregivers of individuals with dementia typically defer their own medical care due to the requirements and constraints of caring for their loved one. According to latest research, the associated stresses of caregiving can result in reduced life expectancy of up to eight years, and in an oft-quoted study, a 63% higher risk of mortality compared to non-caregivers documented in older studies. More recent publications suggest the opposite. However, these studies acknowledge a potential bias that only those caregivers who are healthier may continue to be engaged during the healthcare journey. Nonetheless, most studies seem to agree on the stresses of informal caregivers and the results, including depression, anxiety, musculoskeletal disorders, and overall reduced mental and physical health-related quality of life.
From the perspective of healthcare funding, spend on dementia related care is expected to only increase with the growing population of individuals with neurocognitive decline. In 2020, the spend on long-term dementia care in the US was $361.1B, and individuals with Alzheimer’s are projected to nearly double in 2060. In addition, key medications for dementia care such as Aduhelm and Leqembi will remain cost prohibitive until eligible for Medicare price negotiation after the 13-year biologics “grace” period. As some of the nation’s most vulnerable and historically underserved populations face heightened risks of neurocognitive decline — women of all ethnicities are more prone to Alzheimer’s and individuals of Hispanic and African American backgrounds are forecasted to see a seven-fold and four-fold increase in Alzheimer’s diagnosis, respectively – these communities that already struggle to pay for standard healthcare will experience limited options for long-term dementia care as costs skyrocket. To ensure that all populations have equitable access to quality dementia care, it’s clear that a program to manage the costs and health burdens of neurocognitive decline is critical.
GUIDE – Guiding an Improved Dementia Experience, is the new dementia care model from the CMS and the CMMI (Centers for Medicare and Medicaid Innovation) for beneficiaries who are covered by traditional fee-for-service (FFS) Medicare and their caregivers. Similar, in many ways, to the Special Needs Plans in Medicare Advantage, this eight-year program addresses vital care issues, not only for those experiencing dementia, but their caregivers as well. GUIDE recognizes dementia as a chronic condition requiring the expertise of providers specializing in cognitive and behavioral care, as well as providing for additional management and resource needs outside those addressed by strictly clinical providers. In addition to the physical and behavioral needs of the beneficiary, GUIDE emphasizes the impact of Social Determinants of Health and equity issues to address the typically underserved populations mentioned above; the same individuals who may struggle to afford care and co-pays for expensive medications. The accommodation of caregivers in the model is an enormous step forward, addressing the “hidden costs” of dementia. The model’s approach to supporting patients and caregivers in the home, with the aim of delaying long-term nursing home care for as long as medically appropriate, has the potential to lessen physical and emotional burdens for both patient and caregiver, ultimately impacting direct and indirect societal costs (e.g., caregiver productivity and health). The model may also contribute to the efficient management of institutional costs and capacity.
The model’s dual “on-ramps” which provide resources for participants already experienced in the care of individuals with dementia as well as those new to providing comprehensive care are also critical features. This aspect of the model can encourage wider availability of care and assure quality. After all, navigating the complex care management environment, including community-based organizations, is challenging enough for established providers and programs, but with this model, those new or not as experienced in doing so now have the resources and additional support to offer much-needed dementia care services.
In many respects, the GUIDE model is like the Models of Care for Institutional-, and Dual-, Special Needs Plans in Medicare Advantage and will be familiar to those experienced with these holistic models. Moderate to large size Medicare Advantage Plans would need to hire approximately 1000 nurses each to achieve the ideal staffing ratios to effectively coordinate care for similar populations. This is neither financially tenable nor even feasible. This type of holistic care can only be approached by incorporating the resources in the community. While payers have the ability and infrastructure to do this, it is more challenging for community providers and nearly impossible for caregivers attempting to navigate the healthcare system. Unless providers have networks of community based organizations in place, or know how to establish them, and are accustomed to establishing and directing teams of clinical and non-clinical individuals and organizations, similar to an interdisciplinary care team, the task of surrounding patients and caregivers in services is a daunting task. Providers in specialized practices serving individuals with neurocognitive disorders typically are already tapping into these resources however other providers less familiar with the available networks can benefit from the additional help provided by GUIDE. As individuals, caregivers, particularly those without a healthcare background, are frequently at a complete loss navigating the healthcare system or even knowing what is available to their loved one and to support themselves. Including caregivers in GUIDE lifts these burdens from their shoulders and helps to mitigate their own personal challenges.
Through history, the healthcare industry has developed treatments for illnesses that once seemed to be humanity’s common final journey, only to reveal new and unanticipated challenges to our longevity. When society was dying from infection, heart disease was hardly imagined. Then, doctors began to tame cardiovascular issues only to face the full force of cancer as a “rate limiting” factor in people’s lives. Now, neurodegenerative diseases are unveiling themselves and demanding payers’ and providers’ attention and limited resources. As healthcare thinking evolves, so fortunately do concepts of what care means. With hope, GUIDE represents an incremental step forward.
Photo: wildpixel, Getty Images
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