The Alzheimer’s Association held public input process forums around the country that over 43,000 people participated in to report the challenges they face from Alzheimer’s disease and related dementias.  They shared their insights, concerns and hardships.

The following is based, on their input and is what they believe the U.S. Secretary of Health and Human Services must address in the National Alzheimer’s Plan now being created.

Increase awareness of the impact of Alzheimer’s disease.  Despite the number of people affected, many Americans still know very little about this disease.  It still too often remains in the shadows, discussed in whispers if at all.  We must bring Alzheimer’s fully into the open, explain the warning signs, address misplaced anxieties, correct misconceptions and overcome the stigma that too often makes a terrible disease even more of a hardship.

Real treatments faster.  The ultimate goal is a treatment that can completely prevent or cure Alzheimer’s, but we know that even treatments that simply delay onset of the disease or slow its progression could have a dramatic impact on the quality of people’s lives, federal spending and our nation’s economy.  With appropriate levels of research funding – levels we are far below today – and an enhanced review process, we can accelerate the discovery and delivery of these desperately needed treatments.

Better care now.  We must change the quality of care provided to those with Alzheimer’s.  Care today is often fractured and ineffective, falling far short of what is needed.  Detection and diagnosis, the foundation of good care, often happens far too late, if at all.  As a result, many facing the disease today experience poor care coordination and further complications from coexisting conditions.

Better support today.  We must change the fact that we are very poorly equipped to support those with Alzheimer’s and their caregivers in our homes, communities and long-term care facilities.  Caregivers are too often isolated and uninformed about effective support strategies.

Little government support is provided to help those who want to keep their loved ones at home longer, even if this option is less expensive to our country overall.  The present reality is that even long-term care facilities are often ill-equipped to meet the intense demands of caring for those in the middle and later stages of the disease.

Change for all.  African-Americans and Hispanics are more likely to develop Alzheimer’s and less likely to have a diagnosis.  Rural populations have limited access to support services, and immigrant communities face cultural and language barriers.  This plan must address disparities in diverse and underserved communities.