EARLY ONSET DEMENTIA A NATIONAL CHALLENGE A FUTURE CRISIS ACKNOWLEDGEMENTS This report was prepared by Katie Maslow Associate Director for Quality Care Advocacy Alzheimer s Association Washington DC The Alzheimer s Association acknowledges Kenneth M Langa MD PhD Division of General Medicine and VA Center for Practice Management and Outcomes Research Mohammed U Kabeto MS Division of General Medicine and David R Weir Ph D Institute for Social Research University of Michigan Ann Arbor MI for their valuable work in preparing the HRS data used for the Alzheimer s Association report Early Onset Dementia A National Challenge a Future Crisis REPORT SUMMARY A new assessment of data by the Alzheimer s Association focuses light on a younger generation of individuals who suffer from Alzheimer s and other forms of dementia in contrast to the widely held view that these diseases only afflict older Americans Newly analyzed data from the Health and Retirement Survey HRS indicates that there may be as many as a half a million Americans under age 65 who have dementia or a cognitive impairment at a level of severity consistent with dementia Combining this with data from other studies the Alzheimer s Association calculates that there are between 220 000 and 640 000 people with early onset Alzheimer s or related dementia in the U S today This report incorporates the new analysis of data from the Health and Retirement Survey HRS with a survey conducted by the Alzheimer s Association and in depth personal interviews all of which paint a picture of the early onset of Alzheimer s and dementia among a hidden generation of Americans under age 65 The conclusions drawn from these new data shed much needed light on the vulnerability and unique circumstances faced by this generation of Americans most of whom are baby boomers who will change the face of disease and health care in coming decades The survey research includes extensive personal testimony from people with Alzheimer s and together with the other reports offers policy makers new insights that may help them address health and long term care needs over the next decade To see additional information on this topic log onto www alz org KEY FINDINGS Getting a diagnosis for early onset Alzheimer s and dementia presents serious problems for individuals under the age of 65 Health care providers generally don t look for the disease in younger patients and it can therefore be months or years before the right diagnosis is made and proper treatment can begin Many people with early onset Alzheimer s and other dementia are still working when their symptoms emerge Due to the nature of the condition changes in their job performance or behavior may not be understood or addressed The workplace can become a difficult environment Those who leave their jobs before diagnosis may be denied employer assistance that would otherwise be provided to individuals with disabilities Many who have early onset Alzheimer s and other dementias do not apply for government disability payments under Social Security Disability Insurance SSDI Supplemental Security Income SSI or other disability programs either because they are not aware of available benefit programs or they are unaware that a person with dementia has a qualifying disability Many individuals with early onset Alzheimer s and other dementias have low incomes and are in need of assistance but have a difficult time getting it Many with early onset Alzheimer s and other dementias are in poor health have higher rates of serious medical conditions are much more likely to be hospitalized and have higher out of pocket expenditures for prescription drugs Almost one third of people with early onset dementia have no health insurance People with dementia have trouble buying private health insurance If they are not covered by Medicare or an employee plan and do not qualify for Medicaid they may not be able to afford health care and other essential living expenses People with early onset Alzheimer s and other dementias who require long term care services face high out of pocket expenses that depending upon their age and financial circumstances may not be covered by Medicaid Administration on Aging programs or other programs that pay for long term care services for some people age 65 and over with dementia Existing medical care home care or community service programs may not be appropriate for early onset individuals Family members and other care partners often lack the information and support they need to provide care to their loved ones CONCLUSION The study concludes that not nearly enough is known about the unique characteristics of early onset diseases or the problems faced by those who have them There also remains an inadequate amount of data available on the actual number of early onset individuals and their condition The Alzheimer s Association recommends a number of steps be taken in order to meet the needs of the earlyonset generation of individuals with dementia RECOMMENDATIONS 1 A government private sector sponsored national study to determine a more precise number of people with early onset dementia the causes of their dementia and the unique problems with which they are confronted 2 Research devoted specifically to the prevention the progression and delay of early onset disease 3 A national education program with specific and separate components aimed at the general public health care professionals particularly those in a position to diagnose the disease family and volunteer caregivers employers and human resources personnel 4 Analysis of work environments for employees who have early onset Alzheimer s and other dementias with emphasis on workplace accommodations that may enhance their lives and their productivity 5 Dissemination of information regarding Social Security Disability Insurance SSDI Supplemental Security Income SSI Medicare Medicaid and other programs that aid people with disabilities To see additional information on this topic log onto www alz org 6 Elimination of the 2 year waiting period for Medicare coverage of those under age 65 who ve qualified for SSDI 7 Affordable health insurance for individuals with early onset Alzheimer s and other dementias who do not have access to or are not eligible for existing insurance programs 8 Expansion of Medicaid income limits to accommodate those with early onset 9 Expansion of Administration on Aging AoA funded services to accommodate under age 60 individuals with early