SCOPE OF THE DISEASE

The scope of Alzheimer’s disease is based solely on estimates, and the disease is often overlooked as a cause of death. Reasons for this include:

• There is a lack of routine testing in primary care.
• Individuals may have comorbidities that mask dementia as the primary cause.
• Cognitive impairment may make it difficult for someone to report the symptoms that would result in a diagnosis of dementia.
• Stigma attached to dementia is an important factor for avoidance of help-seeking behaviors and may delay diagnosis and the utilization of health and social services.
• The medical certifier who lists the cause of death may be unaware of a person’s dementia.
  (Stokes et al., 2020)

Alzheimer’s Disease Worldwide

Worldwide, it is estimated that over 50 million people were living with Alzheimer’s disease or other form of dementia in 2020, and this number is expected to double every 20 years. Much of the increase will occur in developing countries and is related to increased life expectancy. About 60% of people with dementia live in low- and middle-income countries, but by 2050 this is expected to rise to 71%.

Demographic aging has increased over the last century, so the world population has a greater number of older people, the population mainly affected by dementia. The fastest growth in the elderly population is taking place in China, India and south Asia, and the western Pacific.

It has been suggested that approximately three quarters of people with dementia worldwide have not received a diagnosis, with one study estimating that 90% remain undiagnosed. In 2021 the country that ranked first in number of people with Alzheimer’s disease was Turkey, with a rate of 57.64 per 100,000, and the country with the lowest ranking was Singapore, with a rate of 0.38. The United States ranked 44th, with a rate of 32.44 (WHO, 2021a, WHO, 2021b).

Alzheimer’s Disease in the United States

As life expectancy in the United States has risen, so has the number of persons with a probable diagnosis of Alzheimer’s disease. It is estimated that 6.2 million Americans ages 65 and older were living with Alzheimer’s in 2021. Seventy-two percent of this number were ages 75 and older.

Among the states, South Dakota has the highest rate per 100,000 population (56.0), and the District of Columbia has the lowest rate (11.5). By 2025 every state across the country is expected to experience an increase of at least 6.7% in the number of people with Alzheimer’s. The West and Southeast are expected to experience the largest percentage increases (Alzheimer’s Association, 2021b).

AGE

More than 1 in 9 people ages 65 and older have Alzheimer’s. In 2019 the rate of Alzheimer’s per 100,000 people by age is described in the table below:

AGE DISTRIBUTION OF PEOPLE WITH ALZHEIMER’S

Age(years)	Rate(per 100,000)
(Alzheimer’s Association, 2021b)
45–54		0.3
55–64		3.0
65–74		24.9
75–84		210.2
85+		1,191.3

GENDER

More women (12%) than men (9%) ages 65 and older have Alzheimer’s disease or other dementias. Almost two thirds of all Americans with Alzheimer’s are women.

The predominant explanation for this disparity is that women live longer than men on average, and older age is the greatest risk factor for Alzheimer’s. Although there does not seem to be a large or consistent difference in the rate at which men and women develop Alzheimer’s or other dementias, there may be differences in why they develop dementia. Differences may be based in biology (such as chromosomal or hormonal differences); differences in environmental, social, and cultural influences on men and women; or the combination of the two.

Lower educational attainment in women than in men born in the first half of the twentieth century could account for elevated risk in women, as limited formal education is a risk factor for dementia.

Other societal gender differences may also be a factor, including differences in occupational attainment between men and women, with a recent study showing that women who participated in the paid workforce earlier in life had better cognitive outcomes after age 60.

Evidence exists that women show more rapid cognitive decline and neurodegeneration than men despite having similar levels of beta-amyloid and tau, meaning the hallmark proteins of Alzheimer’s disease may have more negative effects for women than men (Alzheimer’s Association, 2021b).

RACE/ETHNICITY

Older Black and Hispanic Americans are disproportionately more likely than older White Americans to have Alzheimer’s or other dementias. Alzheimer’s affects 10% of White older adults, while 18.6% of Blacks and 14% of Hispanics ages 65 and older have Alzheimer’s dementia. Japanese Americans have the lowest prevalence of dementia compared with all other ethnic groups.

The higher prevalence in other racial and ethnic groups compared with Whites appears to be a result of a higher risk of developing dementia in these groups compared with Whites of the same age. Genetic factors do not account for the differences. Instead, the difference is explained by disparities in health conditions, socioeconomics, and life experiences for older Black and Hispanic populations compared with older White populations.

Chronic health conditions associated with higher dementia risk, such as cardiovascular disease and diabetes, disproportionately affect Black and Hispanic populations. Social and environmental disparities include lower levels and quality of education, higher rates of poverty, and greater exposure to adversity and discrimination. These health and socioeconomic disparities are grounded in the history of systemic discrimination against Black populations and other people of color in the United States (Alzheimer’s Association, 2021b).

EDUCATION LEVEL

Higher educational levels are widely associated with a higher cognitive reserve, lower risk of dementia, and delayed cognitive decline. However, scientific evidence supporting these claims is controversial.

Data suggest that more education seems to play a role as a form of cognitive reserve that helps people do better at baseline but does not affect actual level of decline. Higher levels of education are tied to having better cognitive function for longer lengths of time, but they are not linked with a person’s risk of developing Alzheimer’s dementia. Low education, however, is considered an important modifiable risk factor for dementia worldwide, despite the lack of a formal consensus definition of “low education” and, consequently, how much education is required to reduce dementia risk.

In the absence of a consensus definition of what is meant by education in general, and low education in particular, it is challenging to translate findings regarding education and dementia risk into policy recommendations. Results of meta-analyses, however, suggest reduced risks of 8% for Alzheimer’s and 7% for any dementia for each year of education (Maccora et al., 2020).

MORBIDITY AND MORTALITY

Alzheimer’s disease is officially listed as the sixth leading cause of death in the United States and the fifth leading cause of death for those ages 65 and older. Alzheimer’s kills more people than breast cancer and prostate cancer combined. One in 3 seniors dies with Alzheimer’s or another dementia.

Alzheimer’s is also a leading cause of disability and poor health in older adults. Before a person with Alzheimer’s dies, they live through years of morbidity as the disease progresses.

It is difficult to determine how many deaths are caused by Alzheimer’s disease each year due to the manner in which causes of death are recorded. According to the latest available data, 121,499 people died from Alzheimer’s disease in 2019. The CDC considers a person to have died from Alzheimer’s if the death certificate lists Alzheimer’s as the underlying cause of death, defined as “the disease or injury which initiated the train of events leading directly to death.”

Between 2000 and 2019, deaths from heart disease decreased 7.3% while deaths from Alzheimer’s increased 145.2%. During the COVID-19 pandemic to date, Alzheimer’s and dementia deaths have increased 16%.

Severe dementia causes complications such as immobility, swallowing disorders, and malnutrition that significantly increase the risk of serious acute conditions that can cause death. One condition, pneumonia, is the most commonly identified immediate cause of death among older adults with Alzheimer’s or other dementias. One autopsy study reported respiratory system diseases were the immediate cause of death in more than half of those with Alzheimer’s, followed by circulatory system disease in about one fourth of them (Alzheimer’s Association, 2021b).

Financial Impact of Alzheimer’s

Alzheimer’s disease inflicts a heavy economic burden on families and on society as a whole. The total lifetime cost of care for someone with dementia has been estimated at $373,527 in 2020 dollars.

In 2021, the total national cost of caring for those living with Alzheimer’s and other dementias was estimated to be $355 billion, which does not include unpaid caregiving by family and friends. Dementia is one of the costliest conditions to society. Medicare and Medicaid are expected to cover $239 billion (or 67%) of the total healthcare and long-term care payments for persons with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $76 billion (or 22% of total payments).

People with Alzheimer’s or other dementias have twice as many hospitalizations per year as other older people, and have more skilled nursing facility stays and home health care visits per year. Overall, 1.3% of all emergency department visits were for people with Alzheimer’s or other dementias. Thirty-two percent of individuals using home health and 31% of those using adult day services have Alzheimer’s or other dementias. Approximately 10% of adult day service centers specialize in caring for individuals with some form of dementia. Forty-two percent of individuals in residential care facilities that assist with everyday activities have some form of dementia, as do 48% of nursing home residents.

In 2020, more than 11 million family and friends provided 83% of the help needed to care for people with dementia, totaling nearly $257 billion in unpaid care. Approximately two thirds of dementia caregivers are women. About 30% are ages 65 or older. Over 60% are married, living with a partner, or in a long-term relationship. Over half of caregivers are providing assistance to a parent or in-law with dementia, and approximately 10% provide help to a spouse with dementia (Alzheimer’s Association, 2021b).

Some individuals have long-term care insurance coverage, and it is important to make certain it specifically identifies coverage for Alzheimer’s. Once a diagnosis of Alzheimer’s disease is made, the individual will not be able to apply for long-term care coverage. If the insurance is already in place at the time of diagnosis, there are certain questions to be asked, such as:

• Is Alzheimer’s disease covered? Most policies say they cover it, but not all.
• At what point after diagnosis can the person begin to collect benefits? Many policies require a certain elimination period or a defined level of physical or cognitive impairment.
• What is the daily benefit, and is it adjusted for inflation annually?
• How long will benefits be paid?
• Is there a maximum lifetime payout?
• What type of care does the policy cover (e.g., skilled nursing home, assisted living, licensed home care)?
• Are there tax implications for receiving these benefits?
  (Alzheimer’s Association, 2021b)

MEDICARE AND MEDICAID COVERAGE

Although Medicare covers care in long-term care hospitals, skilled nursing care in a skilled nursing home and hospice and long-term care in a nursing home are not covered by Medicare.

Medicaid covers nursing home care and long-term care services in the community for those who meet program requirements for level of care, income, and assets. To receive coverage, beneficiaries must have low incomes. Most residents who qualify for Medicaid must spend all their Social Security income and any other monthly income, except for a very small personal needs allowance, to pay for nursing home care. Medicaid only makes up the difference if the resident cannot pay the full cost or has a financially dependent spouse.

Nationally, state Medicaid programs are shifting long-term care services from institutional care to home- and community-based services as a means to both reduce unnecessary costs and meet the growing demand for these services. Federal and state governments share the management and funding of the program, and states differ greatly in the services covered by their Medicaid programs (Alzheimer’s Association, 2021b).

Costs during the Early Stage of Alzheimer’s Disease

• When a patient is undergoing diagnostic testing for Alzheimer’s, Medicare Part B covers 80% of the cost once the deductible has been reached ($203 in 2021).
• When a diagnosis has been made, Medicare Part B pays 80% of the cost for psychological counseling for associated mental health conditions (such as depression and aggression) as well as physical and occupational therapies if prescribed by a doctor and medically necessary.
• Medicare Part D helps pay for prescription drugs, and most standard Alzheimer’s medications are on Medicare’s approved drug list, including the new FDA-approved drug Aduhelm. However, due to its uncertain clinical efficacy, Medicare will not cover the cost of the drug outside of an approved clinical trial.
• Medicare Special Needs Plans, a type of Medicare Advantage plan, are specifically designed for persons with Alzheimer’s.
• A 2017 change to Medicare was the addition of care planning as a service that assists patients in understanding both what medical options are available as well as alternative treatments, clinical trials, and even nonmedical support. Medicare will not necessarily pay for all these services but will pay to help develop a plan to access them.

Costs during the Middle Stage of Alzheimer’s Disease

• During this stage, supervision is required, but not skilled care. Personal care assistance may be required in addition to supervision. Medicare does not provide benefits for personal care or supervision either in the home or in memory care residences, such as assisted living.
• Alternative therapies such as acupuncture or herbal medicine are not covered by Medicare.
• Medicare continues to pay for doctor visits and prescription drugs.

Costs during the Later Stage of Alzheimer’s Disease

• When 24-hour care either at home or in a skilled nursing residence becomes necessary, Medicare begins to pay for additional services. However, qualification can be complex and coverage intermittent. Medicare covers up to 100 days for rehabilitation in a nursing home or skilled nursing facility, but it must be following a qualifying inpatient hospital stay of three days for management of a medical situation (observation services and the day of discharge are not considered part of an inpatient stay). If the nursing home or skilled nursing facility stay is extended, Medicaid may pay for custodial care if the patient has an income and asset level low enough to qualify, while Medicare pays for “medically necessary” care.
• Persons are eligible for home health care if they are certified to require part-time or “intermittent” skilled nursing care (less than 7 days a week or less than 8 hours each day over a period of 21 days or less).
• Medicare does not pay for 24-hour-a-day care at home, meals delivered to the home, homemaker services, or custodial or personal care when this is the only care the person requires.
• Medicare will pay for home health care for up to 35 hours a week, but the person must be certified as “homebound,” either physically or psychologically, and unable to function outside their home. Some Alzheimer’s patients may qualify as homebound, but they may not qualify for services because home health care is not intended to be for a “continuous” need.

Costs in Hospice Care

• Medicare will provide all-inclusive hospice benefits for those who are certified to have six months or less to live by a hospice doctor, sign a statement electing for palliative rather than curative care, and receive care from a Medicare-certified hospice agency. Very late-stage patients will qualify for all palliative care required as well as counseling for the individual and family.
• The patient may have to pay copayments of up to $5 for prescription drugs or products for pain relief and symptoms control.
• Under the Medicare hospital benefit, the patient can receive short-term inpatient or respite care in a Medicare-approved hospital or skilled nursing facility to give caregivers a rest. Medicare pays 95% of the Medicare-approved amount.
• Medicare does not cover room and board if the patient receives care in the home or if the patient lives in a nursing home or hospice inpatient facility.

(Medicare.gov, 2021; Guerrero, 2021)

(See also “Clinical Stages of Alzheimer’s Disease” later in this course and “Resources” at the end of this course.)