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Approximately 6.5 million American live with Alzheimer’s or other dementias. According to Alzheimer’s Facts and Figures, experts estimate that 1 in 9 people ages 65 or older live with dementia. The Alzheimer’s Association projects that these figures will double by 2050, as the population of older adults continues to increase. The incidence of dementia increases with age, and it is estimated that one in three older adults have a form of dementia at the time of death.

Alzheimer’s and other dementias present multiple challenges both to the people who live with the disease and their family caregivers. People with Alzheimer’s dementia live an average of four to eight years after a diagnosis, but some individuals may live as long as 20 years with the condition. Studies suggest that the person living with dementia “will spend an average of 40 percent of this time in the severe stage.” They are far more likely to require institutional care than individuals with other chronic health conditions.

Dementia takes a toll on family caregivers as well. The Alzheimer’s Association estimates that more than 11 million Americans provided unpaid care for their loved ones with dementia. The lifetime cost of care for someone with dementia is estimated at $377,621. Three quarters of that is “borne by family caregivers in the form of unpaid caregiving and out-of-pocket expenses.”

In "Payment For Comprehensive Dementia Care: Five Key Recommendations," an article in Health Affairs Forefront, February 7, 2023. (DOI: 10.1377/forefront.20230206.835921) authors Nora Super, Gary Epstein-Lubow, David B. Reuben, Rani E. Snyder, Jane Carmody and Abby Maglich advocate a new model for a comprehensive dementia care program that addresses the needs of both the persons living with dementia and their caregivers, and offer recommendations on alternative payment models (APMs) for the costs of care. (Benjamin Rose Institute on Aging staff collaborate with the authors on caregiving issues. BRI Care Consultation (BRI-CC) is one of six dementia care models cited in the article.) The full article can be found on the Health Affairs website.

Among the authors’ recommendations:

Comprehensive dementia care programs should address both beneficiary and caregiver needs. The diagnosis of any chronic health condition is often accompanied by significant changes in family dynamics and relationships. The roles between parents and children, spouses or siblings may be altered dramatically as care needs evolve. The diagnosis may also initiate an expanded and more complicated relationship with the individual’s medical provider.

Nowhere is this more evident than with a dementia diagnosis. The potential loss of cognitive function may make other aspects of their diagnosis more complicated. Personality and behaviors may change. This impact on caregivers is significant. Caregivers of those with dementia are twice as likely to identify emotional, financial or physical difficulties, compared to other caregivers. As a group, these caregivers are more likely to suffer from depression and social isolation, more likely to experience stroke or heart disease.

A network of family and friend caregivers is key to the support of individuals with dementia. Beyond personal direct care that may be provided, they are often the advocate, the interpreter and the service coordinator for their loved ones. Addressing the caregivers’ needs helps reduce the burden of the role, and greatly enhances not only their health and wellbeing, but also that of the ones in their care.

Care should be widely available, including to rural and underserved communities. Access to care can be challenging. Some of the populations most at risk for dementia are also among those with the greatest challenges in finding care and support. Older women, who are more likely to be low income and to live alone, are at higher risk for dementia. The incidence of dementia is greater among older African American and Hispanic Americans than among Whites. Social determinants of health, including environmental factors, household income, diet or social engagement, also play a role. Low income and rural populations often lack easy access to treatment or supportive services. As care models are developed, it will be important ensure access to vulnerable groups.

Moving Forward

In 2020, there were approximately 220,000 Ohioans living with dementia. In 2021, the Alzheimer’s Disease and Related Dementias Task Force was established to “examine the needs of individuals diagnosed with Alzheimer's disease or related dementias, the services available in this state for those individuals, and the ability of health care providers and facilities to meet the individuals' current and future needs.” Similar projects are underway in many states, and 49 states, the District of Columbia and Puerto Rico have published state Alzheimer’s Disease Plans.

The authors note, “Because of the cognitive and behavioral manifestations of dementia, the scope of disease management is often broader than health care management of chronic diseases and includes social, legal, and financial issues. This complexity affects caregivers. . .. Moreover, the effects of caregiver burden often translate to costlier care for the person with dementia, such as hospitalization and placement in nursing homes. Yet, to date, the Centers for Medicare and Medicaid Services (CMS) does not have a comprehensive, coordinated way to pay for the unique challenges associated with dementia care.” They conclude the article:

As a nation, we are in an ever-increasing crisis over how to care for vast numbers of individuals living with dementia. Dementia care must improve and should be delivered by evidence-based programs that address the essential care processes—including supporting caregivers—leading to better outcomes and lower costs. As payers consider payment models for comprehensive dementia care services, attention to key design components can help ensure that this payment mechanism achieves its intended goals and promotes health equity. The need is critical; the time is now.

Yes, it is.

Benjamin Rose is a leader in serving the needs of family caregivers. Learn more about our caregiver supports on our website.


"Payment For Comprehensive Dementia Care: Five Key Recommendations", Health Affairs Forefront, February 7, 2023. DOI: 10.1377/forefront.20230206.835921

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