The Alzheimer’s Association and its more than 70 Chapters nationwide hosted over 130 public input sessions, a NAPA web site, and a national Telephone Town Hall to learn what Americans need in a bold and transformational plan. From their input, 10 major challenges emerged. The following is excerpted from the report.
This includes a lack of knowledge and widespread misunderstanding about Alzheimer’s; significant stigma and negative experiences that affect personal and professional relationships; and a poor understanding of the scope of the disease.
Because there’s no way to prevent, stop or slow the progression of Alzheimer’s, many expressed feelings of powerlessness to help themselves or future generations and called for bold action to secure a brighter future.
Challenges lead to delayed diagnosis, poor experiences in the diagnostic process, missed opportunities to immediately connect families with available support and alack of documentation in a patient’s primary medical record.
Communication barriers with health care providers and allied health professionals, care coordination issues with providers, and a lack of knowledgeable personnel equipped to meet the unique needs posed by Alzheimer’s and other dementias results in poor quality of care.
Effectiveness of available drugs varies across the population, but none of the treatments available today alter the underlying course of this terminal disease.
Given the disproportionate impact of Alzheimer’s on ethnic and minority populations, efforts must be implemented to eliminate disparities in these communities.Specific challenges facing those with younger-onset Alzheimer’s. Preconceived notions of Alzheimer’s and age can delay diagnosis, act as a barrier to participation in research or government programs and make it difficult to find long-term care appropriate for younger populations.
Caregivers need critical support to provide in-home care but have trouble finding affordable services and education to care for a loved one, and to alleviate the emotional and physical burden of caregiving.
Many places are unprepared to address the individualized needs of people living with Alzheimer’s, especially those in rural areas.
The costs to treat and care for Alzheimer’s can be tremendously high and unaffordable over time and even more difficult to bear when encountering barriers to qualifying for insurance or government support.