Tens of millions of people around the world are affected by Alzheimer’s disease, a condition that is devastating for patients, caregivers, and families, and that carries with it significant costs for individuals and society. According to Dr. Brent P. Forester, chief of the Center of Excellence in Geriatric Psychiatry at McLean Hospital and medical director of behavioral health integration, quality, and patient experience at Mass General Brigham, “the world of dementia care today is like cancer in the 1970s,” with Alzheimer’s disease and other dementias stigmatized and the few available symptomatic treatments offering little hope.

Dr. Brent P. Forester, chief of the Center of Excellence in Geriatric Psychiatry at McLean Hospital and medical director of behavioral health integration, quality, and patient experience at Mass General Brigham

Alzheimer’s disease is a neurodegenerative disease that causes brain changes in affected individuals that occur along a continuum, beginning with no noticeable symptoms and eventually interfering with cognitive, behavioral, and physical abilities. There have not been easy ways to recognize it early and as of yet no effective treatments that change its course. As patients progress from mild cognitive impairment to more severe stages of the illness, accumulated changes in their brains (sometimes after as long as 20 years) lead to damages that eventually affect thinking skills, memory, sensations, and the ability for self-care, among other symptoms. As the disease continues to develop, people living with Alzheimer’s can no longer function independently and quality of life decreases significantly, while caregiver burdens and costs both rise. This is a difficult journey for all involved.

As Alzheimer’s dementia progresses, increased behavioral symptoms, functional impairments, and concerns for patient safety drive the burden of caregiving. The loss of independence that occurs as patients progress in Alzheimer’s disease severity is one of the most challenging aspects of managing the disease. It also brings higher costs, such as admission to assisted-living facilities or nursing homes. A year of nursing home care in the United States can cost approximately $100,000, more than twice the median household income for Americans age 65 and over. Most of this cost is borne by patients and their families. The lifetime costs of caring for Alzheimer’s can add up to more than $500,000 per person for someone diagnosed in his or her mid-70s. These costs are twice as much as those for a person without Alzheimer’s disease, with over 80% of the incremental costs borne by the patient and caregivers.

Other elements of the Alzheimer’s disease burden to society include additional costs of care and the opportunity costs of millions of caregivers who are less productive economically. In the United States alone, some 5.8 million people are living with Alzheimer’s disease and another 16.3 million are caring for them. The direct and indirect costs of Alzheimer’s disease and other forms of dementia are estimated at $550 billion in the United States for 2020. This includes both $305 billion in direct medical costs—of which $66 billion are paid out-of-pocket by patients and their caregivers—and $244 billion in indirect costs, which includes valuation of the nearly 18 billion hours of care provided each year by unpaid caregivers. On average, in the United States there are three caregivers for every patient.

The value of innovation

Susan Pechlin, president and CEO of Alliance for Aging Research

Innovative drugs for Alzheimer’s disease are in the research pipeline. Even if they may not offer outright cures, by delaying disease progression these potential treatments may offer significant value for society by enabling people to remain independent longer and cutting down on the rapidly growing costs of care in the more advanced stages of the disease. The hope that these investigative therapies will bring is incalculable—as we’ve seen in recent years in response to such diseases as HIV/AIDS, hepatitis C, and cancers, advances in biomedical research initiated by new molecules using new modes of action have led to breakthroughs that made dramatic improvements in treatment outcomes possible. The Alzheimer’s community eagerly anticipates a new wave of innovation.

But just as Medicare and Medicaid are already wrestling with the costs and benefits of financing Alzheimer’s care and support, if and when new disease-modifying therapies become available, do the experts know how to value these clinically meaningful innovations? Some researchers use a cost-effectiveness tool called a “quality-adjusted life year” (QALY). As Susan Peschin, president and CEO of Alliance for Aging Research, notes, “It’s tough to use QALYs to measure the worth of people with Alzheimer’s disease because they are old and often sick with multiple diseases.” And they may use additional treatments to accompany the neuropsychiatric symptoms that often accompany Alzheimer’s, but since they only affect quality of life, not length of life, QALY metrics do not fully capture their value. Peschin also points out that “QALY models do not generally recognize the significant burden of Alzheimer’s disease on family caregivers and society,” in effect discriminating against older persons in setting cost-effectiveness thresholds.

These kinds of policy questions will be increasingly important as the number of people living with Alzheimer’s disease continues to increase and if therapeutic modalities available to treat their condition improve. Now there is a “therapeutic nihilism” among some physicians who ask, what’s the point of treating people with Alzheimer’s if there’s no effective therapy? Given the increased knowledge of how to detect and diagnose the brain changes that lead to Alzheimer’s and the potential to intervene earlier to slow progression of the disease, isn’t it time to rethink how to apply cost-effectiveness models to conditions that affect older Americans? Susan Peschin asks, “Should we make assumptions about what these outcomes mean to people living with the disease? Or should we take patient views into consideration? This raises even larger questions about our duty to each other in an equitable society. It’s time to rethink our approach and make society healthier in a more holistic way.” Not only will we face questions about how best to use and how to value new treatments for Alzheimer’s, but there are also important policy and implementation questions coming to the fore about how to address quality of life issues for people living with dementia, the burden on caregivers and society, and the most effective way to organize health systems to provide the necessary services.

Indeed, with a range of new integrated models of “memory care” teams (with geriatric nurse practitioners, dementia care managers/social workers, and geriatricians) working closely with primary care physicians, patients, families, and caregivers, it’s possible to ask “can we evolve a model that points people in the right way at different stages of their journey?” In a review of care models, the American Journal of Geriatric Psychiatry noted these innovations in care will be as important as future innovations in disease-modifying therapies for Alzheimer’s patients—and suggest that there’s an opportunity for “therapeutic optimism.” According to Forester, it’s time to think differently about innovation in Alzheimer’s disease: We should “talk about what people living with dementia can do, not what they can’t do.”