® PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE 1828 L STREET NW, SUITE 900 WASHINGTON, DC 20036 202.827.7700 RESEARCH SPOTLIGHT ON Dementia and Cognitive Impairment As older adults make up an increasing percentage of the U.S. population, the rates of Alzheimer’s disease and other forms of severe cognitive impairment are also going up. The need for research into diagnosis, treatment, and prevention of dementias and other age-related conditions is now more important than ever. According to the Centers for Disease Control and Prevention, as many as 5 million Americans are living with Alzheimer’s disease. The number of people in the United States with that disease is expected to increase nearly threefold by 2050, reaching 14 million. Despite this enormous and growing burden, there is no cure, and there are no proven treatments. The effect of dementias extends beyond patients. About 15 million family members and friends provide more than 18 billion hours of care per year to those living with Alzheimer’s and other dementias, according to the Alzheimer’s Association. As of December 2016, PCORI has awarded 53 $ MILLION TO FUND 11 comparative clinical effectiveness research studies related to dementia and cognitive impairment Building a Robust Research Portfolio PCORI funds comparative clinical effectiveness research (CER) that helps people make choices by finding out which healthcare options work best for which patients, considering their needs and preferences. PCORI is currently funding several studies to address questions of importance to Alzheimer’s disease and dementia patients and those who care for them. Those studies include comparative assessments of approaches to preventing or delaying dementia, improving care for rural and Hispanic populations, addressing family caregiver burdens, and achieving patient-centered care goals. BY THE NUMBERS By number of projects Special Populations Studied Older Adults 10 Racial/Ethnic Minorities Low Income 5 3 Rural Urban 2 Low Health Literacy/Numeracy 2 PCORI.ORG Multiple Chronic Conditions 3 Women | [email protected] | 2 1 FOLLOW US @PCORI Building Capacity for Patient-Centered Research PCORI is investing in people and infrastructure to support highquality patient-centered research for years to come. The Promise of PCORnet PCORnet, the National Patient-Centered Clinical Research Network, is building capacity for research by supporting patient-led data networks and connecting them with researchers studying similar topics. Bringing Patients Together to Drive Research The National Alzheimer’s & Dementia Patient & Caregiver–Powered Research Network is a collaboration among • UsAgainstAlzheimer’s • Mayo Clinic •U niversity of California, San Francisco’s Brain Health Registry •U niversity of Florida As part of PCORnet, the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network focuses on accelerating the evaluation of treatments. This national network connects patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research. PCORI has awarded nearly $1.6 million to fund the development of this network. STUDY SPOTLIGHTS Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia People with a diagnosis of mild cognitive impairment are at risk of progressing to dementia. But research shows that behavioral changes can reduce this risk. This study will follow 364 patients enrolled in a 10-day, 50-hour intensive state-of-the-art behavioral intervention across Mayo Clinic sites in Minnesota, Florida, and Arizona. The five daily components are 1 hour each of 1) daily physical exercise, 2) computer-based cognitive exercise, 3) patient and family education, 4) separate support groups for MCI patients and their care partners, and 5) memory support system compensation training developed in a previous NIH study. It will compare the effectiveness of each component of the five behavioral interventions to see which are most effective in preventing or delaying the onset of dementia. LEAD RESEARCHER: Glenn E. Smith, PhD, University of Florida YEAR APPROVED: 2013 PROJECT BUDGET: $2 million Extension Connection: Advancing Dementia Care for Rural and Hispanic Populations Antipsychotic medications are frequently used to treat behavioral and psychological symptoms in people with Alzheimer’s disease and other dementias. While certain antipsychotics are effective in treating these symptoms under some circumstances, the drugs also increase the risks of death and stroke in people with dementia. In many cases, the drugs are not being appropriately prescribed and used. In this project, researchers will evaluate the effectiveness in rural areas of a toolkit and online training program designed to improve management of dementia patients’ behavioral and psychological symptoms and reduce inappropriate antipsychotic use. The project will measure the effect of the toolkit and program on the safety and quality of life of rural older adults and Hispanic and Latino patients with dementia and their caregivers. LEAD RESEARCHER: Ryan Michael Carnahan, PharmD, MS, University of Iowa YEAR APPROVED: 2012 PROJECT BUDGET: $1.7 million UPDATED DECEMBER 2016 | RESEARCH DONE DIFFERENTLY®
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