Reports call for changes in approaching dementia risk, end-of-life care

Liz Seegert

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Photo by r. nial bradshaw via Flickr
Photo by r. nial bradshaw via Flickr

Addressing the global epidemic of dementia and improving end-of-life planning and care in the United States are the subjects of two new reports released today by Alzheimer’s Disease International and the Institute of Medicine. Both reports offer insights into the realities of dealing with an aging population and a lack of appropriate services and supports to meet present and future needs.

According to ADI, substantial evidence exists that risk for dementia can be reduced by using the same approaches as those which promote cardiovascular health — eliminating tobacco use, early detection and treatment of hypertension and diabetes. They call for a worldwide campaign to integrate brain health messages into existing public health efforts. Additionally, the report calls for the World Health Organization to include dementia risk in future noncommunicable disease efforts.

While cardiovascular disease, hypertension and diabetes are declining in some nations, the ADI report noted that incidence is actually on the rise in many low- and middle-income countries — the same locations where dementia prevalence is anticipated to increase. Evidence is not yet strong enough to claim that lifestyle changes can prevent dementia in individual, but the report emphasized that “the future course of the global dementia epidemic is likely to depend crucially upon the success or otherwise of continuing efforts to improve global public health. “

Dementia is one of the main causes of dependence and disability at older ages and ADI said that delaying onset of the disease by an average of five years could reduce population prevalence by 50 percent.

One issue that most people – regardless of diagnosis – will face at some point is end-of-life care. Medicare reimbursement for clinical counseling on living wills, advance directives and care options was stripped from the Affordable Care Act when opponents likened the process to “death panels.” According to IOM former president Harvey Feinberg, M.D., and current president Victor Dzau, M.D., the organization published this analysis — with support from an anonymous donor — in an effort to present an unbiased and comprehensive overview of the issue and to encourage conversation about a topic that many would rather not discuss.

The report noted that more that a quarter of all adults, including many of those over age 75, have given little thought to their own end-of-life care — despite polls showing that most people are concerned about high costs of care and the potential of becoming a financial burden on their families. Improving care for those with serious illnesses could help to stabilize health and social costs by eliminating unwanted and unnecessary services, with little or no real clinical benefits.

The committee called for using these savings for relevant support services such as family caregiver training, or home modification to provide a better quality of life for patients and their families.

The IOM offered five key recommendations as a roadmap for future end-of-life care and management:

  • Delivery of Person-Centered, Family-Oriented End-of-Life Care, including a palliative care approach
  • Improved Clinician-Patient Communication and Advance Care Planning, especially development of standards by professional societies and other organizations for clinician-patient communication and advance care planning that are measurable, actionable, and evidence based
  • Policies and Payment Systems to Support High-Quality End-of-Life Care – most notably the IOM called for a major reorientation and restructuring of Medicare, Medicaid and other health care delivery programs to create a system of care that ensures quality and addresses the central needs of those nearing the end of life and their families
  • Public Education and Engagement — the report called on government agencies, professional organizations, health, consumer and faith-based groups to encourage  advance care planning and informed choice based on the needs and values of individuals by disseminating fact-based information

The report concluded that given the rapidly aging population, high cost of end-of-life care and the many individuals who give the issue little thought until confronted with limited options, that a patient-centered, family-oriented approach to care near the end of life should be a high national priority.

What is happening with end-of-life planning in your community? Are there programs or services available? How do people feel about it and what should they know?

How does the U.S. compare with other nations when it comes to addressing risk of Alzheimer’s? Can a “heart friendly” lifestyle really stave off dementia?

Liz Seegert

Liz Seegert

Liz Seegert is AHCJ’s health beat leader for aging. She’s an award-winning, independent health journalist based in New York’s Hudson Valley, who writes about caregiving, dementia, access to care, nursing homes and policy. As AHCJ’s health beat leader for aging,