What you need to know
It’s not always, or only, Alzheimer’s
Although Alzheimer’s disease accounts for 60 percent to 80 percent of dementia cases, there are other forms of this condition:
- Vascular/multi-infarct dementia
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
Many other medical issues – head injuries, strokes, depression, and more – can cause dementia-like symptoms and physicians carefully evaluate this possibility before making a dementia diagnosis. No single test for Alzheimer’s disease exists; for more on the diagnosis process, see this.
This series of videos from Johns Hopkins includes conversations with family members that offer ideas and advice for Alzheimer’s and dementia patient caregivers.
The call to action … finally answered
In January of 2011, President Obama signed the National Alzheimer’s Project Act (NAPA) into law. The act’s goal is to create a national strategic plan to address the escalating crisis of Alzheimer’s disease and related dementias.
Two months later, the National Institute on Aging/Alzheimer’s Association published “new” diagnostic guidelines for Alzheimer’s disease. This fact sheet provides the high points.
The guidelines define three stages of the Alzheimer’s trajectory: (1) pre-clinical, when the brain changes but no symptoms are evident; (2) mild cognitive impairment, when memory problems surface but don’t yet compromise an individual’s independence; and (3) Alzheimer’s dementia, when dementia symptoms interfere with daily activities and some type of care is required.
In January 2012, the Dept. of Health and Human Services released its draft framework for a national plan to address ADRDs. After public comments are received, the hope is that the plan will start being implemented this summer.
Dementia’s cost
The costs of caring for those with Alzheimer’s and related dementias places strains on:
Families – Families provide up to 80% of care for those with dementia. 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.
Stressful caregiving responsibilities often take a toll on caregivers’ health, resulting in additional costs of $7.9 billion, the Alzheimer’s Association estimates.
Public and private payers – Costs for government programs and private insurers will soar in the years ahead, the Alzheimer’s Association predicts:
Total costs of care for individuals with Alzheimer’s disease by all payers will soar from $172 billion in 2010 to more than $1 trillion in 2050, with Medicare costs increasing more than 600 percent, from $88 billion today to $627 billion in 2050. During the same time period, Medicaid costs will soar 400 percent, from $34 billion to $178 billion.
The health care system – Doctors, hospitals, assisted living centers, nursing homes, home care agencies, hospices and other medical providers will struggle to care for patients with dementia in the years ahead. Workforce issues and associated costs are documented in The Institute of Medicine report Retooling for an Aging America and Caring in America: A Guide to America’s Home Care Workforce.
What’s ahead
Baby Boomers – often caring for a parent with dementia – are entering the time of life when ADRDs begins showing up. Their need for care will force Federal and State governments, health care systems, families, and those providing community services and home-based care to rethink care provision, strategies and funding – and make hard choices.
Sources and Resources
I. Interviews
Local sources:
Most stories you’ll be writing will focus on Alzheimer’s, so contact the media representative at the local chapter of the Alzheimer’s Association: they’ll know key experts in your city/region. Or locate an expert by trolling through the Alzheimer’s Foundation of America’s membership list.
If you are lucky enough to live in a city with an academic medical center (i.e. a hospital and/or hospital system affiliated with a medical school) contact the media/public affairs person handling the neurology, psychiatry and/geriatrics departments.
National sources:
Contact the media/public affairs departments at nationally-ranked hospitals with strong neurology/neurosurgery, geriatrics and/or psychiatry departments. Among those that fit this criteria:
- Johns Hopkins Hospital (#1 in neurology and neurosurgery, #1 in psychiatry, # 3 in geriatrics)
- Massachusetts General Hospital (#1 in psychiatry, #3 in neurology and neurosurgery, #4 in geriatrics) (note: both JH and MG ranked #1 in psychiatry)
- Mayo Clinic (# 2 in neurology and neurosurgery, #6 in geriatrics, # 9 in psychiatry)
- New York Presbyterian Hospital of Columbia and Cornell (#4 in neurology and neurosurgery, #4 in psychiatry, # 8 in geriatrics)
- UPMC-University of Pittsburgh Medical Center (#8 in psychiatry, # 9 in geriatrics, # 10 in neurology and neurosurgery)
Research and/or Policy sources:
For policy- and/or research-focused articles, the following contacts can point you in the right direction:
Alzheimer’s Association
contact: Niles Frantz
phone: 312-335-8700 (5777)
email: niles.rfrantz@alz.org
Alzheimer’s Foundation
contact: Carol Steinberg
phone: 866-232-8484
email: csteinberg@alzfdn.org
American Geriatrics Society (AGS)
contact: Erin Corley
phone: 212-308-1414 # 302
email: ecorley@americangeriatrics.org
Gerontological Society of America (GSA)
contact: Todd Kluss
phone: 202-587-2839
email: tkluss@geron.org
National Institute on Aging
Contact: Peggy Vaughn
301-496-1752
email: nianews3@mail.nih.gov
University of Pittsburgh Center for Neuroscience
contact: B. Rose Huber
phone: 412-624-4356
email: rhuber@pitt.edu
USC/Dementia Epidemiology Research Group
contact: USF Media Relations Office
Phone: 415-502-6397
Email: Derek.deike@UCSF.edu
Biochemist Gregory Petsko makes the argument that, in the next 50 years, we’ll see an epidemic of neurological diseases, such as Alzheimer’s, as the world population ages. His solution: more research into the brain and its functions.
II. Websites
The following websites provide excellent information for covering ADRDs:
Aging & Disability Resource Center /Alzheimer’s Disease and Related Dementias Toolkit
Alzheimer’s Disease, Education and Referral Center (ADER)
Alzheimer’s Disease: State Fact Sheets
American Association for Geriatric Psychiatry
Geriatric Mental Health Foundation
National Institute of Neurological Disorders and Stroke
III. Articles/Books/Guides/Monographs/Reports
The following publications provide information, background and insight on ADRDs. Most include good lists, charts, and graphs that (with credits) can be incorporated into your articles. Many more are available on the Internet.
Story Ideas
- Many medical experts advocate for early diagnosis of Alzheimer’s disease. Why? Discuss the controversy over early diagnosis, especially in light of the absence of effective treatments. Is an early diagnosis something that patients and their families want?
- What are challenges related to diagnosis, treatment and care of Alzheimer’s disease and related dementias for specific groups – e.g., LGBT, Hispanics and African American communities? What solutions (support groups, special clinics, etc.) have been developed to address their needs? Are these adequate?
- What special issues affect people with early-onset Alzheimer’s disease? Are these being addressed by hospitals or healthcare providers in your area?
- What new products and services are available to help patients with ADRD live at home? What do these do, how well do they work?
- Has your state adopted or is it working toward a dementia care plan? If so, cover the process. Who is championing the initiative; what organizations and/or groups support and oppose it?
- For those who really enjoy digging. compare and contrast your community’s response to American’s two most devastating health “epidemics”: AIDS and Alzheimer’s.
- What are the pros and cons of genetic testing and/or biomarker testing for Alzheimer’s disease.
- What role do lifestyle behaviors play in delaying or preventing dementia? What does the scientific evidence show?
- Why are ARDRs more common in women?
The following are good sources for information on this topic:
Dr. Margery Gass m.gass@menopause.org 440-442-7680
Eileen Resnick, PhD Eileen@swhr.org 202-496-5010
Dr. Joann E. Manson jmanson@rics.bwh.harvard.edu 617-278-0871
Dr. Cynthia Stenkel castenkel@UCSD.edu 858-336-9201 - An increasing number of people continue to work after being diagnosed with ADRDs. Find someone in your community who fits in this category and profile them.
Eileen Beal, M.A., has been covering health care and aging since the late 1990s. She’s written several health-related books. including Age Well! with geriatrician Robert Palmer, and her work has appeared in Aging Today, Arthritis Today, BottomLine Health, Current Health, WebMD and various other publications.
