Alzheimer's from the Frontlines: Challenges a National Alzheimer's Plan Must Address is a collective effort to share the real and unrelenting struggles that must be addressed in the National Alzheimer's Plan now being created through the implementation of the National Alzheimer's Project Act (NAPA).
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.
- A lack of public awareness.
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. - Insufficient research funding.
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. - Difficulties with diagnosis.
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. - Poor dementia care.
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. - Inadequate treatments.
Effectiveness of available drugs varies across the population, but none of the treatments available today alter the underlying course of this terminal disease. - Specific challenges facing diverse communities.
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. - Unprepared caregivers.
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. - Ill-equipped communities.
Many places are unprepared to address the individualized needs of people living with Alzheimer's, especially those in rural areas. - Mounting costs.
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.
The report outline solutions too. They advocate the following:
To address a lack of public awareness: The National Alzheimer's Plan should launch a nationwide Alzheimer's awareness campaign designed to increase awareness of the disease, promote early detection and diagnosis, and promote available services.
To overcome insufficient research funding: The National Alzheimer's Plan should, as a leading priority, immediately increase annual Alzheimer's funding to $2 billion, a level scientists believe can be productively and strategically invested at once in pursuit of Alzheimer's breakthroughs; simultaneously, initiate a process to determine the higher level of annual funding appropriate over the long-term.
To overcome difficulties with diagnosis: The National Alzheimer's Plan should encourage health care providers to improve the detection and diagnosis of Alzheimer's and pair each diagnosis with immediate, meaningful care planning and recording of the diagnosis in the patient's medical record.
To overcome poor dementia care: The National Alzheimer's Plan should define the elements of quality dementia care, determine the best indicators to measure whether this care is being delivered, and embed these measures throughout the health care system to drive better practice. Emphasis should be placed on improving rates of diagnosis, reducing preventable hospitalizations and encouraging greater care coordination.
To overcome inadequate treatments: The National Alzheimer's Plan should recognize Alzheimer's as an unmet medical need within the context of the Food and Drug Administration's accelerated drug review processes, and it should correct any barriers that discourage the aggressive pursuit of preventive and other pre-symptomatic treatments.
To overcome the specific challenges facing diverse communities: The National Alzheimer's Plan should ensure that every relevant Federal effort to address health disparities recognizes the tremendous challenges that Alzheimer's and other dementias pose to diverse communities, and incorporate specific objectives, strategies and actions within these efforts to address them.
To overcome the specific challenges facing those with younger-onset Alzheimer's: The National Alzheimer's Plan should prioritize an assessment of the size of the younger-onset (under age 65) Alzheimer's community, ensure full and equal access for these individuals to all Alzheimer's programs and supports available to older Americans with Alzheimer's, and address the particular needs of this population when programs designed for older Americans are not appropriate.
To support unprepared caregivers: The National Alzheimer's Plan should widely deploy Alzheimer's caregiver support services that are culturally sensitive to diverse audiences and integrate elements from the best evidence-based caregiver interventions, such as caregiver consultations to identify the needs in each individual situation.
To overcome ill-equipped communities: The National Alzheimer's Plan should call for the creation of demonstration projects under Medicare to evaluate the outcomes of expanding adult day health services for those with Alzheimer's and home health care for the purpose of preserving the abilities and independence of persons with dementia.
To overcome mounting costs: The National Alzheimer's Plan should, in addition to cost reductions achieved through the above recommendations, address a major driver of costs to the federal and to state governments, as well as to American families, by equipping families to keep persons with dementia at home longer through access to custodial care services without having to reduce their savings to the point of becoming Medicaid eligible.
The aging services community cannot sit idly by during this crisis and needs to be a vital part of the solution. I encourage you to read the full report.
Learn more ~ or join the conversation!
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Alzheimer's Association
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