EARLY ONSET DEMENTIA A NATIONAL CHALLENGE A FUTURE CRISIS June 2006 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 JUNE 2006 Table of Contents I 1 Introduction Organization and perspectives of the report 3 Problems confronted by people with early onset dementia and their families 3 Steps toward solutions 5 II Prevalence and Causes of Early Onset Dementia 8 Estimated prevalence of early onset dementia 8 Possible causes of early onset dementia 11 Possible causes of cognitive impairment that is not dementia 12 Needed research on prevalence and causes of early onset dementia 13 III Problems Confronted by People with Early Onset Dementia and Their Families and Steps Toward Solutions 14 1 Difficulty getting an accurate diagnosis 15 2 Loss of employment and job related income 17 3 Difficulty obtaining SSDI SSI and other disability benefits 21 4 Lack of health insurance and high out of pocket expenditures for medical care 26 5 High out of pocket expenditures for long term care 34 6 Lack of appropriate medical care residential care and community services 40 IV A Call To Action 52 References 54 Acknowledgements 59 Appendix A The Health and Retirement Study 60 Appendix B Tables 64 June 2006 Alzheimer s Association I Introduction Alzheimer s disease and other dementias are devastating conditions that create huge emotional financial and physical challenges for the person and his or her family These conditions usually affect older people When they occur in people under age 65 the conditions cause additional and unique problems because they are so unexpected and because most of the potentially helpful programs and services are designed for and targeted to older people The term early onset dementia refers to dementia that first occurs in a person under age 65 The dementia may be caused by Alzheimer s disease or other diseases and conditions People who have early onset dementia may be in any stage of dementia early middle or late New data from the Health and Retirement Study HRS a large nationally representative survey indicate that in 2000 480 000 Americans age 55 64 had cognitive impairment at a level severe enough to be considered disabling The HRS data do not specify the causes of disabling cognitive impairment and it is not clear how many of these people had Alzheimer s disease or other dementias Based on the HRS data and findings from several other studies the Alzheimer s Association estimates that there are between 220 000 and 640 000 Americans with early onset Alzheimer s disease and other dementias Additional research is needed to develop a more precise figure but the proposed range provides a plausible first estimate and indicates that many more Americans have early onset Alzheimer s disease and other dementias than is generally acknowledged They are people like Deborah Mauro Deborah was a physical education teacher in the Auburn Maine school system a marathon runner bicyclist and downhill skier She was diagnosed with Alzheimer s disease in 1999 at age 49 Her husband John took care of her at home until 2005 She now lives in a residential care facility in Maine She can no longer walk and does not recognize her husband or their adult children Krista and John Gerald Michalak Jerry was an elementary school teacher in the Williamsville Central School System and an educational consultant to school districts across New York State Dementia is a syndrome of decline in memory and other cognitive abilities e g language judgment recognition that is severe enough to interfere significantly with work usual activities and relationships with others 1 See Appendix A for a description of the HRS and detailed information about how cognitive status is measured in the study and how the term disabling cognitive impairment is defined for this report Individuals named in this report are not HRS respondents June 2006 1 Alzheimer s Association for 31 years In 1998 he began to experience memory problems His primary care physician first diagnosed the problem as stress Further loss of cognitive abilities led to his retirement in 2000 and he was finally diagnosed with Alzheimer s disease in 2005 at age 62 Currently he lives at home with his wife Janet in Getzville New York Woody Hoffman Woody was a senior finance officer in the Berkeley California Public Works Department He was diagnosed with Alzheimer s disease in 2002 at age 59 and had to retire in 2003 because of the disease His diagnosis came only four months after he married Cathy Dodd Woody was an avid weightlifter runner and bicyclist He continued these activities until late 2005 when another bicyclist ran into him during his daily bicycle ride on the Golden Gate Bridge Woody suffered severe spinal cord and traumatic brain injuries He is now undergoing rehabilitation therapies in a skilled nursing facility in California Dick Ryan Dick was a city planner in Boulder and Vail Colorado In his mid 40s he left his job and met and married Darlene He never worked again but stayed home to care for their son He had been a quiet gentle man who loved golf but in his mid 50s he began to have sudden rages and odd behaviors Dick was diagnosed with frontotemporal dementia in 2003 at age 63 The family moved to Texas a few years ago and Dick now lives in a secured assisted living facility there Tracy Mobley Tracy was a nurse technician in a hospital intensive care unit in southwest Missouri She was diagnosed with Alzheimer s disease in 2002 at age 38 From the onset of symptoms Tracy kept a diary and wrote a book Young Hope which chronicles the journey she and her family took to get a diagnosis at such a young age Currently Tracy lives at home with her husband Allen and their 11 year old son Austin who provide much care and support Little research has been conducted in the U S about the problems confronted by Americans with early onset Alzheimer s disease and other dementias This report uses information from the HRS a 2004 Alzheimer s Association