RECRUITING NOW:
Family Caregiver Research Opportunity

Enrollment begins Wednesday, Sept 11th

This online pilot is evaluating a new mobile program to support dementia caregivers well-being. It is funded by the National Institute on Aging and requires a caregiver to complete two surveys, complete about five web based activities, and receive text messages for one month. Caregivers are compensated for their participation. Caregivers can sign-up 9/11-10/9 or until 50 caregivers have been enrolled.

Please share the following link with any caregivers who may be interested in participating: prochange.com/caring4caregivers.
OR
Contact Recruitment Partners to receive a flyer with study information.


Turning Point Documentary Film Sheds Light on the Importance of Research Studies

The race to find treatments, if not a cure, for Alzheimer’s disease has seen setback after devastating setback in recent years, prompting the medical and scientific community to question their answers about the underlying mechanisms of the disease.
In his documentary Turning Point, acclaimed filmmaker and director James Keach (Walk the Line; Glen Campbell… I’ll Be Me) follows a team of dedicated scientists on the front lines of Alzheimer’s research and captures the raw disappointment and renewed hope of those working to find a cure for this fatal, incurable disease, which affects roughly 5.7 million Americans, or 1 in 10 adult Americans over the age of 65. 
Where will the future of Alzheimer’s research take us? How close are we to conquering this disease? How will we improve the process of recruitment and retention for research studies?
If you are interested in attending one of the screenings listed below, please RSVP by clicking the RSVP link after the appropriate screening, or email the Turning Point screenings team at turningpointfilm2018@gmail.com for more information. The screenings team can also help you book your own community screening of the film.
  1. 09/16/19: Marquette Manor – Indianapolis, IN (By invitation only)
  2. 09/17/19: Alzheimer’s San Diego – San Diego, CA (RSVP)
  3. 09/24/19: Advanced Memory Research Institute of NJ – Freehold, NJ (RSVP)
  4. 09/25/19: The Cognitive Research Center of New Jersey – Springfield, NJ (RSVP)
  5. 09/27/19: Clinical Trial Network – Houston, TX (RSVP)
  6. 09/28/19: Ashley Manor – Westminster, CO (By invitation only)
  7. 10/02/19: HudsonAlpha Institute for Biotechnology – Huntsville, AL (By invitation only)
  8. 10/05/19: DeKalb County Public Library – Decatur, GA (By invitation only)
  9. 10/22/19: New York Genome Center – New York, NY (By invitation only)
  10. 10/27/19: Richmond Behavioral Associates – Staten Island, NY (RSVP)
  11. 10/28/19: LeadingAge Annual Meeting – San Diego, CA (By invitation only)
  12. 10/28/19: Milken Future of Health Summit at GWU School of Public Health – Washington, DC (Conference event)
  13. 11/06/19: Renstar Medical Research – Ocala, FL (RSVP link forthcoming)
  14. 11/08/19: UCLA – Los Angeles, CA (RSVP)
  15. 11/15/19: Gerontological Society of America Conference – Austin, TX (Conference event)
  16. 11/16/19: UCSD & Pacific Research Network (AM Screening) – San Diego, CA (RSVP link forthcoming)
  17. 11/16/19: UCSD & Pacific Research Network (PM Screening) – San Diego, CA (RSVP link forthcoming)
  18. 11/19/19: Axiom Research & USF – Tampa, FL (RSVP link forthcoming)

What’s Happening in the Alzheimer’s Field?

World Alzheimer’s Month

World Alzheimer’s Month is the international campaign by Alzheimer’s Disease International (ADI) every September to raise awareness and challenge the stigma that surrounds dementia. World Alzheimer’s Month was launched in 2012. World Alzheimer’s Day is September 21st
There are several ways you can participate in World Alzheimer’s Month. You could organize your own event, visit the ADI “Get Involved” page for materials and ideas, or join an activity organized by your national Alzheimer’s Association. You can also spread the word on social media using the hashtag #WorldAlzMonth.

Senate vote on NIH Funding

This week the United States Senate Committee on Appropriations is expected to act on vital funding for Alzheimer’s research at the National Institutes of Health (NIH).
 
The Senate Labor-HHS Appropriations Subcommittee will consider the Alzheimer’s Associations’ funding request of $350 million for NIH, as well as funding to implement the BOLD Alzheimer’s Act. These increases would be part of a larger Fiscal Year 2020 Appropriations bill. Following action by the subcommittee the full Appropriations Committee is then expected to act on the bill later in the week.
 
This is a critical time for your Senators to hear from you. Contact them today

An overwhelming lack of specialty dementia diagnosis and care

 For years, anecdotal evidence has supported the belief that most dementia patients do not receive a detailed diagnosis, but now researchers have quantified these inadequacies. By tracking nearly a quarter of a million people with dementia diagnoses over 5 years, researchers found that 85% were first diagnosed by a non-specialist and the vast majority of patients did not follow-up with a specialist. Without a proper diagnosis of the type of dementia, patients and families are not provided the range of treatment options available, knowledge of medications that could make the symptoms worse, and information on disease progression that can assist in advance care planning. Additionally, as research studies often require a differentiated diagnosis in inclusion criteria, individuals who do not receive a diagnosis that includes the type of dementia may not be able to access important on-going research.
Read more about the study here.
Categories: Monthly Updates

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