Alzheimer's Disease & Related Dementias

This is the PDF version of a Session Background Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).

This is the PDF version of a Session Background Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).

This is the PDF version of a Session Background Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).

This is the PDF version of a Session Background Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).

This is the PDF version of a Session Background Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).

This issue brief examines concerns individuals have about becoming disabled and needing long-term services and supports (LTSS), how these concerns vary by household income and assets, what actions people are willing to take to address their LTSS needs, and how homeowners who are willing to use home equity to finance LTSS differ from those who are not willing.

Long-term services and supports (LTSS) are expensive. The average private pay cost of a private room nursing home stay in 2014 was about $88,000 a year. Although this cost is insurable through private long-term care (LTC) insurance, coverage is low.

Previous research demonstrates that lack of planning for the potential need for long-term services and supports (LTSS) is associated with lack of knowledge about these services. People who do not have a firm understanding of their longevity risks, probability of needing and using LTSS, and the associated costs for services may be less likely to plan for their future LTSS needs.

A growing number of programs to help persons with dementia and their family caregivers are being developed, tested, and implemented in the United States. To learn more about whether and how models of dementia care meet practice standards, 14 components of comprehensive dementia care were identified and site visits conducted to a small sample of programs to assess how they are implemented.

Despite the high costs for long-term services and supports (LTSS), the current financing system inadequately protects people from the financial devastation of long-term disabling conditions such as Alzheimer's disease or stroke. Private long-term care (LTC) insurance coverage is low and Medicare does not cover LTSS.