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Summit to focus on dementia care and caregivers

Elena Fazio
Elena FAZIO,
Director, Office of AD-ADRD Strategic Coordination OASC,
Division of Behavioral and Social Research (DBSR)

Today, it’s estimated that more than 5.3 million Americans live with Alzheimer’s disease. This number is expected to climb to nearly 14 million by 2050, unless we find ways to stop the disease. Many thousands more live with related disorders, such as frontotemporal, vascular, Lewy body, and other types of dementia. It’s critical that we be prepared for this rapid increase and have adequate services and supports to assist both those living with dementia and their caregivers, as well as deploy today’s care resources most effectively.

Did you know?

  • In 2011, nearly 6 million caregivers assisted older adults with dementia, devoting more than 6 billion hours per year in care.
  • The costs of caring for people with dementia in the U. S. in 2010 were between $159 billion and $215 billion.
  • In 2010, the average cost of a private room in a nursing home was $229 per day or $83,585 per year; almost two-thirds of older people could not afford to live in a nursing home for one year.

A summit focused on dementia care

Though research on care and services for people with dementia and their caregivers was integrated in the agenda of previous scientific summits on Alzheimer’s and related dementias, it was not the primary focus.

The National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers on October 16 and 17 will focus on the research needed to develop, evaluate, implement, and disseminate comprehensive care, services, and support for people with dementia, their families, and other caregivers.

Many agencies, organizations, and individuals have been involved in planning this Summit. The meeting is being coordinated by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) of the U.S. Department of Health and Human Services (HHS) as part of ASPE’s activities under the National Alzheimer’s Project Act (NAPA) and its Advisory Council on Alzheimer’s Research, Care, and Services. Summit co-chairs Dr. Laura Gitlin of Johns Hopkins University and Katie Maslow of the Gerontological Society of America chaired a steering committee, which developed the agenda. The steering committee included people from public and private sector organizations, as well as federal agencies. The Summit has been supported in large part by the private sector through donations to the Foundation for the NIH, as well as by funding from the HHS Office of Women’s Health.

Registration for attending the Summit in person has reached capacity. But you can still take part. We invite you to sign up for the live videocast or add your name to the in-person waitlist.

A comprehensive agenda

The agenda aims to engage a wide community, across several disciplines. Major topics to be explored at the Summit include:

  • The demographics of dementia
  • Specific care needs and supportive approaches for people living with dementia
  • Support for family and other caregivers
  • Care coordination and management
  • Involving people with dementia, along with family and other caregivers as active members of research teams and as study participants

A combination of plenary addresses, panel discussions, short reports and commentaries, and audience discussions will ensure that all relevant topics and cross-cutting themes are addressed.

What happens next?

We expect that the Summit will result in recommendations for research priorities to inform a broad range of agencies, organizations and individuals from the public and private sectors. These top-line recommendations should be available before the end of October. A more detailed version of the recommendations is expected to be presented to the NAPA Advisory Council in January 2018.

If you haven’t personally experienced the rewards and challenges of taking care of someone with dementia, you almost certainly know someone who has. As all of us in aging research know, the issue of taking care of older people – with and without dementia – is becoming more urgent. New generation research can help us move forward with evidence-based programs, practices, and policies to meet these challenges today and in the future. We hope that participants will come away from this meeting with the tools and strategies that they can use – personally or professionally – to improve care and services for people with dementia and those who care for them.

You can find more information on themes and the agenda on the Summit webpage.

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