According to current estimates, more than five million people in the United States live with Alzheimer’s disease, the most common type of dementia. Under the current trajectory, more than 13.8 million additional baby boomers are expected to develop dementia by 2050. Despite enormous effort by researchers, there are currently no drugs or medical procedures for preventing or curing cognitive-impairing diseases.
A 2015 AARP policy survey revealed that virtually all members recognize dementia is a serious problem, and that 85 percent know someone who has or had dementia, yet misconceptions abound. While members want to know about their mental functioning, and health care providers are the first line of defense for individuals who notice a decline in cognitive health, few health care providers are discussing dementia with their patients or assessing mental functioning during the Medicare Annual Wellness Visit. Nearly half of members mistakenly believe that dementia is a mental illness, and 41 percent think dementia is part of the normal process of aging.
The societal cost of dementia is high. Currently, it is estimated that the average per-person Medicare spending for people 65 and older with dementia is three times higher than for seniors without dementia. Medicaid payments are 19 times higher. And research projects that the cost of caring for those with Alzheimer’s will make up 24.2 percent of Medicare’s spending by 2040. Dementia not only impacts the patient, but also their family and friends. In 2015, the direct annual cost of caring for those with dementia is estimated to be $226 billion, with expectations that it will reach over $1.1 trillion a year by 2050. It is also estimated that Alzheimer’s disease and dementia caregivers had $9.7 billion in additional health care costs of their own due to the physical and emotional toll of caregiving.
People with dementia make up substantial proportions of all older individuals served in medical, residential, and home- and community-based care settings. On average, about one-quarter of all older hospital patients are people with dementia. Almost 65% of all nursing home residents have moderate to severe cognitive impairment. While an overwhelming majority of people would prefer to receive services in their homes or in the community, many communities are not equipped to meet the needs of individuals with dementia and the families who provide the care. This has enormous implications on quality of life, both for individuals living with dementia and for their families.
Policymakers must address racial and ethnic disparities in dementia diagnosis and care. Currently, African Americans and Hispanics have substantially higher incidence rates of dementia than whites. As the nation ages, racial and ethnic diversity among people with dementia will increase and the need to develop person- and family-centered care to accommodate such diversity will grow. This is important because certain racial and ethnic groups use care differently and face different risks of suffering from Alzheimer’s disease, different chances of receiving a diagnosis, and different attitudes and support from caregivers.
Dementia Treatment: Policy
Raising the quality of care
Policymakers should expand and bring to scale demonstrations that are cost-effective and proven to improve quality of life for individuals across all stages of the diseases that cause dementia. The goal of these demonstrations is to delay the progression of dementia and increase independence through person-centered care, while lowering overall health care costs. Dementia “centers for excellence,” which educate, conduct research, and expedite the adoption of cost-effective best practices should be established and replicated.
Training and education
Private industries, including banks and financial institutions, the aging network, and all health care and legal professionals, as well as law enforcement and first responders, should have appropriate training in identifying and providing adequate support for individuals with cognitive impairment. Medicare and Medicaid should ensure adequate training and support are provided to formal and family caregivers providing care to someone with dementia. Federal government should ensure that dementia-specific training of direct care workers and facility administrators is included as a quality measure for nursing homes and home health services in Medicare Compare.
Federal and state governments should enact long-term public education programs incorporating multilingual and multicultural messaging with sufficient funding to raise public awareness of dementia, reduce stigma, encourage detection of cognitive impairment, promote brain health, and help families cope with its impact throughout the progression of the disease.
Screening, diagnosis, and education in clinical care
Health care professionals who provide an initial diagnosis of cognitive decline should identify to individuals and their families, as appropriate, differences between the types and stages of impairment, and the appropriate kinds of care available. Screenings to detect cognitive impairment should be made more generally available and standardized for those who wish to take them as part of the Medicare Annual Wellness Visit. Federal government should collect data on how many providers are performing detection of cognitive impairment during the Medicare Annual Wellness Visit, what detection tools they may be using, and how many patients are being referred on for further assessment.
Greater emphasis on nonpharmacological treatments
When at all possible, and most appropriate, care should be provided through behavioral modification and environmental interventions rather than pharmacological treatments, which may not be effective for some people. (For related policy, see this chapter’s section Quality, Safety, and Research—Medical Research.)
Focus on disparities
State and local governments should develop task forces where broad segments of local communities partner with local health care facilities, find common ground, and seek ways to improve care and reduce costs to individuals and institutions that care for patients with dementia.
Policymakers should strongly encourage advance planning before, at initial diagnosis, and throughout the progression of the disease to ensure family members know the wishes of the person with cognitive impairment. Discussions should include designation of powers of attorney, creation of living wills, and identification and financing of preferred care settings.
Policymakers should facilitate greater community engagement of persons with cognitive impairment, including expanded day care services, increased intergenerational engagement, creation of dementia-friendly communities, and education to eliminate the stigma associated with cognitive impairment. (For related policy, see Chapter 8, Long-Term Services and Supports—Expanding Home- and Community-Based Services and Access and Quality and Consumer Rights Across Settings—Access and Quality Issues for People with Cognitive and Mental Disorders; and Chapter 9, Livable Communities.)