http://aja.sagepub.com/content/29/2/111?etoc
- Allan S. Vann, EdD1⇑
- Allan S. Vann, EdD 28 Abbey Drive, Commack, NY 11725, USA. Email: acvann@optonline.net
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.
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