New dementia cost model looks to lower financial toll for patients, families

Researchers from the University of Southern California (USC) are building a dementia cost model that will generate comprehensive national and annual estimates of the cost of dementia. With a five-year, $8.2 million federal grant from the National Institute of Aging, the new model could benefit patients and families by assisting families living with dementia by planning their budgets and support needs. It could also inform treatment and caregiving options, as well as shape health care policy.

Currently, the costs attributed with dementia drastically hurt families, draining their savings and causing caregivers to leave their jobs. In the US, the condition is an economic burden, with total health care and long-term care costs for individuals with Alzheimer’s or other dementias projecting to reach $360 billion this year. The Alzheimer Association even projects that this total will reach nearly $1 trillion by 2050.

Project advisor Maria Aranda, a professor at the USC Suzanne Dworak-Peck School of Social Work, said, “Other consequences may include caregivers’ lower retirement savings or limited ability to send their children to college. In turn, this leads to an intergenerational transmission of inequality and financial vulnerability for families of persons with dementia.”

The new model, known as a “dynamic microsimulation model,” will incorporate several data sets, including data from CMS. It will also account for costs across a range of disease stages, such as those acquired by the person living with dementia, their care partners and care givers, and their payers. Additionally, the model’s estimates will adjust for prevention and treatment innovations.

“Once you factor in the social costs of Alzheimer’s — how it affects family, caregivers and others — you quickly realize it is not just an illness but a social epidemic,” Dana Goldman, co-leader of the research team, said. “This project will help amplify the importance of finding treatments that forestall the devastation.”

USC Viterbi scientists will design an interface in the model, which will be available to the public and user-friendly. Researchers will be able to calculate numerous factors that affect dementia patients and their families, like the social and economic impact of drugs that treat the neuropsychiatric symptoms associated with advance dementia. This will keep patients out of hospitals and emergency rooms.

Interestingly, the tool may be able to measure cost savings provided by a new drug, Leqembi, delaying by two months the expense of 24-hour care.

Julie Zissimopoulous, a professor at the USC Price School of Public Policy and head leader of the project, said she and her research team want to know about the future implications of the drug, including its efficacy in patients overtime, particularly for 10 to 20 years.

“Leqembi is a great example,” Zissimopoulous said. “It’s a new FDA-approved treatment for early-stage Alzheimer’s; we have data from clinical trials that informs patients and the health care providers about safety and efficacy. But these data are not informative about the other outcomes patients and their families care about including quality of life impacts that may result from this slowing of cognitive decline. And we want to know about not just the 18 months of the clinical trial, but we want to know about them for 10 years, for 20 years.”

With this new infrastructure, researchers hope it’ll further understanding of dementia progression and how to delay its symptoms.

“Once you factor in the social costs of Alzheimer’s — how it affects family, caregivers and others — you quickly realize it is not just an illness but a social epidemic,” Goldman said. “This project will help amplify the importance of finding treatments that forestall the devastation.”

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The untold cost of caregiving: We all have a role to play

There is a memory from my medical school days that has stuck with me for decades. It’s one I’ve shared often and may have played a hand in my professional path. I came home for a medical school break and was enjoying a visit with my grandparents. We were sitting around the dining room table as we had many times, but this time was different. My grandfather’s Alzheimer’s disease symptoms had progressed since my last visit. He was a silent bystander to our family conversation that day, until, without warning, he slammed his fist on table with such force that everything shook. He stood up, agitated and upset, and ran out the front door. I followed him as he wandered the neighborhood. Eventually, I was able to bring him back inside. This was a marked change from the quiet, gentle man I had known. Although I would learn more about the progression of Alzheimer’s disease symptoms, that day, I was sure of one thing. I turned to my grandmother and said, “you can’t do this by yourself anymore.” She had been caring for my grandfather all on her own for many years with little support. Shortly after, my grandfather was moved to long-term care.

Nearly half of caregivers in the U.S. who provide care for an older adult do so for someone living with Alzheimer's disease or dementia. As America ages, these numbers are expected to grow exponentially. During my decades of experience working with people who live with Alzheimer’s disease I’ve seen first-hand the detrimental impact this condition has on the family and caregivers. The impact is especially hard on the “sandwich generation,” a term describing people who are navigating the trifecta of caring for a loved one, juggling a career, and the pressures of parenting children of their own. The complexities of care, financial burden, and human toll it takes for someone to care for people suffering from Alzheimer’s disease are staggering. Worse, these challenges go largely unnoticed and unsupported by resources in our communities.

Half of sandwich generation caregivers caring for loved ones with Alzheimer’s disease or dementia feel as though they are drowning and unprepared for the role, according to a new survey conducted by Wakefield Research and sponsored by Otsuka America Pharmaceutical. Nearly two-thirds (65%) of caregivers surveyed say that their role is more stressful than any job they’ve held in the past. They have paid a heavy price, with caregiving taking a toll on nearly every aspect of their lives, putting their finances, mental health, and jobs on the line. The impact is even greater among sandwich generation caregivers with 72% reporting they have had to cut back on spending for necessities such as food, tapping into retirement or personal savings, or cut back on their own medical care expenses.

Despite the heavy load they are carrying, two thirds (66%) of Alzheimer’s disease and dementia caregivers report feeling undervalued by society, believing society values career over caregiving.

Alzheimer’s disease and dementia caregivers shoulder a heavy burden, struggling to manage it all, every day. Undeniably, being a family caregiver is not a responsibility that is chosen; it is circumstance and obligation that most, if not all, family caregivers, are thrust into. But that doesn’t make them any less worthy of support for the vital role they play. There are, of course, silver linings. Mixed in with the stress of this role, the majority (55%) of caregivers surveyed describe their role as the most important responsibility they’ve ever had. Seeing these numbers and reflecting on my own experiences, it’s clear family caregivers are lacking tangible, practical resources to help navigate hard moments. One in nine Americans aged 65 and older has Alzheimer’s disease, and millions of families in our country will be affected by Alzheimer’s disease at one point. Alzheimer’s disease and dementia are still not approached with the same priority and urgency as our physical health. Working at a company that recognizes the challenging and critical role family caregivers play for people living with Alzheimer’s disease has affirmed for me what’s possible when we all work together to raise awareness for the needs of caregivers. In November, Otsuka announced a corporate caregiver commitment, deepening the company’s work in advocating for visibility and support of caregivers, providing tangible tools to address their needs and to make a meaningful impact in their lives. The company is also introducing caregiver benefits to Otsuka employees. It has prompted me to think about what could be achieved if all come together to address the caregiver crisis, which will continue to grow as the population ages.

We have the potential to improve the future for caregivers if we all do our part. Caregivers shouldn’t have to live in crisis to do the most vital tasks in our society. My hope is our government officials will use their platforms to ensure caregivers are protected and supported. My ask of my peers in the medical community and fellow leaders in health care is that we commit to work together to ignite greater awareness for the gaps in support that have left Alzheimer’s disease caregivers in our country struggling to care for their loved one, often at the expense of their health. As for the rest of us, we all know a caregiver. The next time you speak to them, ask them how they’re doing. Ask them what they’re going through. The more we understand their challenges and needs, the more we can understand where they need support and the value they bring.

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Researchers Find New Method to Measure Cognitive Impairment, Dementia

This article, " Health-Deficit Accumulation Affects Risk for Mild Cognitive Impairment, Dementia," was originally published in NeurologyLive.

Using a frailty index score could enable clinicians to identify patients at risk for cognitive dysfunction, making it an important marker for prognostic value.

Newly published data suggests health-deficit accumulation, specifically among older Americans, affects the likelihood of progressive cognitive impairment, as well as the likelihood of cognitive improvement independent of the APOE ε4 allele.

Lead author David D. Ward, PhD, postdoctoral fellow, geriatric medicine research, Centre for Health Care of the Elderly, Nova Scotia Healthy Authority, and colleagues calculated a frailty index score using the deficit-accumulation approach in participants aged 50 years and older from the National Alzheimer’s Coordinating Center (NACC).

Among those not cognitively impaired (NCI; n = 9773), each 0.1 increment increase in score were associated with a higher risk of developing mild cognitive impairment (MCI) and a higher risk of developing dementia.

In total, there were 14,490 participants in the study with a mean age of 72.2 years. In the MCI subsample (n = 4717) at baseline, there was a higher degree of frailty that was associated with a lower probability of being reclassified as NCI from MCI, a higher risk of returning to MCI in those who were reclassified as NCI, and a higher risk of progressing to dementia.

"We conclude that frailty is a key risk factor for age-related cognitive dysfunction and dementia, representing both a target for interventions aimed at the prevention of age-related cognitive impairment and possible prognostic marker among those who have MCI,” the authors wrote.

The score is a health-state measure, incorporating information from multiple physiological systems, and closely reflects an individual’s risk for adverse health events and mortality independently of chronological age. A higher frailty index score indicated accumulation of more age-related health deficits while approximating biological age.

The researchers aimed to detail the dynamic nature of cognitive functioning by calculating the likelihood of transitions between cognitive states in both directions over a 12-month period. Decline of cognitive function was considered forward transition, whereas improvement of cognitive functioning was defined as backwards transition.

The investigators also assessed whether frailty index score and APOE ε4 allele carrier status exerted independent or interactive effects on cognitive-state transition probabilities.

They found no statistically significant interactions between these variables for any transition in the NCI subsample. However, in the MCI subsample, the association of the frailty index score and the risk of progressing to dementia was significantly weaker in those carrying an APOE ε4 allele than in non-carriers (interaction hazard risk [HR], 0.88; 95% CI, 0.80–0.97).

There were no meaningful differences in these associations when participants whose race was other than white were removed from the analytical sample. Notably, associations of the frailty index score with transition probabilities did not differ significantly between men and women.

Over 12 months, NCI subsample participants maintained their prior state 43,086 times (90.6%) and transitioned between states 4491 times (9.4%), 3086 (68.7%) of which were transitions between cognitive states, with 1405 (31.3%) transitions to death. Of the cognitive-state transitions in the NCI subsample, 80.9% were forward transitions, and 19.1% were backward transitions. In the MCI subsample, 70.5% were forward compared to 29.5% who experienced backwards transition.

"This work supports an emerging conceptualization of late-onset dementia as a complex outcome of aging that often is intimately related to an individual’s general health, as well as genetic risk factors,” the authors wrote.

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Particulate Matter Increases Future Risk of Alzheimer Disease

Progressive brain atrophy known to be predictive of Alzheimer disease (AD) is linked to late-life exposure to particulate matter with aerodynamic diameters <2.5-μm (PM2.5), according to new research.

Longitudinal analyses showed that for each interquartile range (IQR) increase (IQR, 2.82- μg/m3) of PM2.5, the associated risk of developing AD increased by 24% (hazard ratio [HR], 1.24; 95% CI, 1.14–1.34) over a 5-year period, as assessed by increased AD pattern similarity (AD-PS) scores. This association remained within levels of PM2.5 below US regulatory standards (<12-μg/m3).

Principal author Diana Younan, PhD, research associate, University of Southern California, stated in a related release that the “findings have important public health implications because not only did we find brain shrinkage in women exposed to the highest levels of PM2.5 pollution but we also found it in women exposed to levels lower than those that the EPA considers safe.”

Younan and colleagues investigated data from 1365 women free of dementia with a mean age of 77.9 years (standard deviation [SD], 2.7) that participated in the WHIMS Magnetic Resonance Imaging (WHIMS MRI) study.

MRI data at baseline and after 5 years was investigated. AD-PS scores—which have been shown to be associated with known risk factors of AD and poor cognitive function—were developed by a supervised machine learning algorithm by comparison of MRI data from the AD Neuroimaging Initiative of gray matter atrophy in areas vulnerable to AD such as the amygdala, hippocampus, thalamus, midbrain, parahippocampal gyrus, and inferior temporal lobe areas.

In longitudinal analysis, IQR-increments were significantly associated with a 0.031 (β = 0.031; 95% CI, 0.017–0.046) increase in AD-PS score.

In fully adjusted models the association was 0.026 (95% CI, 0.009–0.043), which correlates to the 24% increase of AD risk. This association remained after adjusting for socio-demographics, lifestyle, and clinical characteristics including cerebrovascular factors such as white matter lesion volume and stroke, challenging previous studies that have proposed a cerebrovascular mechanism of PM2.5 damage leading to brain atrophy.

Instead, Younan and colleagues favor the theorized mechanism that PM2.5 directly contributes to the neurodegenerative process of dementia via a neurotoxic effect on brain structure.

Sensitivity analyses confirmed the positive association between PM2.5 and AD-PS score after adjusting for baseline AD-PS scores. No association was seen between PM2.5 and baseline AD-PS score in cross sectional analyses (β = –0.004; 95% CI, –0.019 to 0.011).

Previous analyses of WHIMS MRI include region-of-interest analyses that showed residence in areas with higher PM2.5 was associated with smaller total brain and white matter volumes, and that residing in places with >12-μg/m3 concentrations of PM2.5 increased the risk of global cognitive decline by 81% and all-cause dementia by 92%.

Younan and colleagues call for future studies “to fully investigate whether the neurodegenerative effects of late-life exposures to airborne particles may be contributed by or independent of cerebrovascular damage before or during late life...to replicate these results and to thoroughly explore other measures of cerebrovascular damage that may not be captured by white matter lesions and were not explored in our study (e.g., microbleeds; lacunar infarcts).”

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