Today’s Research on Aging: The Demography of Dementia and Dementia Caregiving — A report from the Population Reference Bureau summarizes what is known about the characteristics of people with dementia and their caregiving/living arrangements. These reports are based on studies funded by the National Institute on Aging. Understanding the characteristics of those with dementia can help lawmakers design policies that better meet the needs of this rapidly growing population and their families.
The Alzheimer’s Prevention Initiative’s (API) Generation Study is studying cognitively normal older adults with two copies of the APOE ɛ4 gene. The study will be conducted at about 90 sites in North America, Europe, and Australia, about half of them in the U.S. The research team has enrolled approximately 1,340 cognitively normal adults, 60 to 75, who will be randomly assigned to take either a test drug or a placebo for at least five years. Banner Alzheimer’s Institute in Phoenix is running the study in the U.S., along with Novartis Pharmaceuticals and Amgen.
Alzheimers.gov — a new, comprehensive resource from the National Institutes for Health. It was developed for professionals, those living with the disease or other dementias, and the people who care for them. Provides links to research, clinical trials, facts and figures, tips for living with, and caring for those living with Alzheimer’s. There’s also news about current and prior research, which can help journalists catch up on scientific studies they may have missed.
The Center for Brain Health Equity, created by UsAgainstAlzheimer’s with a $1.5 million cooperative agreement with the CDC Healthy Brain Initiative, the Center for Brain Health Equity will help address racial and gender disparities associated with Alzheimer’s and other dementias. Black Americans are 2-3 times more likely to develop Alzheimer’s as Whites; Latinos are 1.5x as likely. And women make up 60% of all people living with Alzheimer’s and two-thirds of all caregiver. The Center will use data-based strategies from the National Alzheimer’s Disease Index, a new tool under development by UsAgainstAlzheimer’s that enables healthcare providers, public health professionals, researchers, and government leaders to analyze Alzheimer’s health statistics by geography and demographics.
The Centers for Disease Control and Prevention in July 2019 updated their Alzheimer’s Disease and Healthy Aging Data Portal with state-by-state data on caregiving, mental health and Alzheimer’s Disease that can be used for “prioritization and evaluation of public health interventions.” The population of people living with Alzheimer’s is projected to more than double by 2050, states need to be prepared to respond to the disease as a public health issue.
LGBT and Dementia: An August 2018 report from the Alzheimer’s Association and SAGE identifies unique challenges for LGBT community facing Alzheimer’s and other dementias. The brief outlines the distinct issues that arise when Alzheimer’s disease, sexual orientation, and gender identification and expression intersect, allowing advocates and care providers to better meet the needs of LGBT elders and their caregivers facing dementia.
The 2018 Dementia Care Practice Recommendations define quality care across all care settings and throughout the disease course. They are intended for professional care providers who work with individuals living with dementia and their families in residential and community based care settings. Recommendations encompass:
- person-centered care,
- assessment care and planning
- supportive and therapeutic environments
- transitions and coordination of services
- medical management
- ongoing behavioral and psychological symptioms
and other practice criteria. The Practice Recommendations appear in a February 2018 supplement of The Gerontologist.
A report from UsAgainstAlzheimer’s, Hiding in Plain Sight- Social and Demographic Trends That Will Exacerbate the Impact of Alzheimer’s, is a frank look at the capacity of the U.S. health system to cope with projected incidence of the disease. [Note that report was written by Nicholas Eberstadt, Ph.D., of the American Enterprise Institute.] Separately, the organization released an issue brief on Alzheimer’s toll on veterans: Veterans and Alzheimer’s: Meeting the Crisis Head On – which looks at the unique challenges among those who served in the military.
2017 Alzheimer’s Disease Facts and Figures — updated report on the prevalence, mortality, morbidity, costs of care of Alzheimer’s among the U.S. population and the toll on family caregivers
A February 2014 report from Alzheimer’s Disease International and The Compass Group, Nutrition and Dementia, investigates whether the right nutrition might help the millions worldwide with this disease. Researchers found that malnutrition — or what they call under-nutrition — was a major problem; 20-45 percent of those with dementia experience “significant” weight loss over a year. The report also looks at dietary factors across the lifespan that may affect onset of dementia later in life. For more information on how to cover nutrition and aging, check out Melinda Hemmelgarn’s tip sheet.
A November 2013 data brief from the National Center for Health Statistics compares residential care communities with and without special dementia care units in 2010. About 4 in 10 residents (42 percent) living in residential care communities had Alzheimer’s disease or another dementia. Some states have specific requirements for residential care for these patients such as locked doors, and specially trained staff.
Among the major findings:
- 17 percent of residential care communities in the U.S. Had special dementia care units in 2010
- Beds in these special units accounted for 13 percent of all residential care beds
- Facilities with special dementia care units were more likely to be chain-affiliated and built specifically as a residential care community, and less likely to be certified or to participate in Medicaid.
- At least 7 out of 10 residential care communities with dementia special care units had features such as specially trained staff (88 percent), an enclosed courtyard (82 percent), doors with keypads or electronic keys (79 percent), and locked exit doors (76 percent).
- More residential communities with dementia care units were located in the Northeast or a metropolitan statistical area and less likely to be situated in the western U.S.
There are some helpful charts to put the data in visual perspective. Reporters may want to see how local residential facilities compare to the national data, or use these figures in combination with a story like this one from KSWB-San Diego – on how a daughter decided her parents needed to move to a care facility.
The government’s Alzheimer’s Disease Education and Referral Center is a rich resource for reporters writing about this issue.
The Alzheimer’s Association also disseminates lots of information, including topic sheets and brochures about dementia.
The Fisher Center for Alzheimer’s Research Foundation publishes a list of medical providers involved in caring for patients with dementia, available by ZIP code.
National Plan to Address Alzheimer’s Disease
Alzheimer’s Foundation of America
Aging & Disability Resource Center /Alzheimer’s Disease and Related Dementias Toolkit
Alzheimer’s Disease: State Fact Sheets
National Institute of Neurological Disorders and Stroke
Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address, report by the Alzheimer’s Association
Dementia Capability Toolkit
NINDS Multi-Infarct Dementia Information Page
- Dementia with Lewy bodies
Lewy Body Dementia Association
NINDS Dementia With Lewy Bodies Information Page
Mayo Clinic information about Lewy body dementia - Frontotemproal dementia/Pick’s disease
NINDS Frontotemporal Dementia Information Page
Help Guide’s information on Pick’s Disease - Mixed dementia
Research on Mixed dementia: emerging concepts and therapeutic implications
ALZ.org information on Alzheimers Disease Mixed Dementia - “Related” dementias – among the most common are:
Parkinson’s-related dementia
Alcohol-related dementia
AIDS-related dementia
Diagnosis of Alzheimer’s Disease and Dementia
This fact sheet provides the high points in Alzheimer’s Disease Diagnosis.
This series of videos from Johns Hopkins includes conversations with family members that offer ideas and advice for Alzheimer’s and dementia patient caregivers.
National Alzheimer’s Project Act
In January 2012, the Dept. of Health and Human Services released its draft framework for a national plan to address ADRDs.
The Alzheimer’s Association reports that in 2010 nearly 15 million Alzheimer’s and dementia caregivers provided 17 billion hours of unpaid care valued at $202 billion. Costs for government programs and private insurers will soar in the years ahead as the Alzheimer’s Association predicts.
Workforce issues and associated costs are documented in The Institute of Medicine reportRetooling for an Aging America and Caring in America: A Guide to America’s Home Care Workforce.
Some useful sources for journalists are available from the Alzheimer’s Foundation of America’s membership list that helps journalists locale an expert in his/her city/region.
This is another list of useful sources for policy and/or research.
See more sources, publications and resources in the tip sheet “What reporters should know about Alzheimer’s and related dementias.”
Place and Brain Health Equity: A report from the Urban Institute and Us Against Alzheimer’s uses data from the National Alzheimer’s Disease Index to analyze the county-level impacts of dementia and explores the social inequities present in counties highly impacted by Alzheimer’s among Black and Latino people. The report calls for an increased focus on understanding the relationship between place, the social determinants of health, and dementia risk to promote brain health equity across the lifespan.