Dementia and Cognitive Impairment

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PATIENT-CENTERED OUTCOMES
RESEARCH INSTITUTE
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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
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2
1
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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
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RESEARCH DONE DIFFERENTLY®