Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2014 Mar;29(2):111-3.
doi: 10.1177/1533317513511292. Epub 2013 Dec 26.

A caregiver's wish list for a National Alzheimer's Agenda

Allan S Vann  1
Affiliations
Review

A caregiver's wish list for a National Alzheimer's Agenda

Allan S Vann. Am J Alzheimers Dis Other Demen. 2014 Mar.

Abstract

When panels are convened to discuss the best way to deal with Alzheimer's disease (AD), the panels often consist of representatives from government agencies, national Alzheimer's organizations, medicine, research, and pharmaceutical companies. Although each of these stakeholder groups has much to contribute to such discussions, too often the voices of caregivers are not heard. Even the National Alzheimer's Project Act (NAPA) Advisory Council has only one full-time 24/7 caregiver as a member. Of 26 voices heard at the NAPA meetings, only 1 can speak for what life is like for a 24/7 caregiver of a loved one having AD. This article provides 10 items that I would raise at such a meeting based upon my own personal experience and what I have learned from others in my weekly spouse caregiver support group and in my online support groups. Some items suggest funding priorities, some suggest changes in how doctors currently diagnose and treat people with AD and their caregivers, and some suggest the need for more caregiver voices to be heard by government panels and politicians who have the power to effect change.

Keywords: Alzheimer’s disease; caregiver; national agenda; policy.

PubMed Disclaimer

Conflict of interest statement

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). U.S. Department of Health & Human Services, NIH Research Portfolio Online Report Tools (online). www.report.nih.gov/categorical_spending.aspx. Accessed July 16, 2013.
    1. National Vital Statistic Reports, Vol. 61, No. 6, October 10, 2012. Centers for Disease Control and Prevention. www.cdc.gov/nchs/data/nvsr/nvsr61_06.pdf. Accessed July 16, 2013.
    1. Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association (online). www.alz.org/downloads/facts_figures_2013.pdf. Accessed July 16, 2013 - PubMed
    1. Pols call for statewide Alzheimer’s effort. Newsday. June 17, 2013.
    1. Vann AS. Current Alzheimer’s medications: effective treatment options or expensive bottles of hope? J Am Med Dir Assoc. 2013;14(7):525–526. - PubMed