BILL OF RIGHTS FOR PEOPLE LIVING WITH ALZHEIMER’S DISEASE 

Alzheimer’s does not make us less than we were before. All of us living with Alzheimer's have a right to the same dignity and respect afforded to all people.

Those of us living with Alzheimer's disease too often experience discrimination on the basis of our condition. Public and private payers have treated us differently in coverage decisions compared to other patient communities; employers treat us differently after learning of our diagnosis; some may lose or have restrictions placed on driving privileges in some states once diagnosed; and more.

As treatments continue to improve and slow disease progression, decisions on continuing employment, mobility, independence, and more should be determined according to fitness and ability, with all appropriate and regular testing to ensure that we are safe and capable. We have a right to equal treatment under the law and protection from employment discrimination, housing discrimination, discrimination in healthcare, and any other forms of unfair treatment. Further, while disclosing our diagnosis may be necessary in some instances, that is a personal choice, as we do not forfeit our right to privacy upon receiving our diagnosis or genetic testing results.

Early diagnosis and treatment are the most critical tools in the fight against Alzheimer's. Food and Drug Administration (FDA) approved treatments aimed at slowing disease progression have proven effective in the early stage of the disease. Every person has a right to prompt diagnosis at stages of disease when available treatments can be effective. Speedy access to FDA-approved treatments effective in treating common symptoms of Alzheimer’s disease, like cognitive enhancers and medications addressing neuropsychiatric symptoms and sleep disorders, is also essential.

We must break down barriers to early detection, including the shortage of dementia specialists, barriers to cognitive testing in primary care, and restrictions on accessing diagnostics so that people living with or at risk of Alzheimer's do not have to wait years for diagnosis and treatment.

Researchers estimate that more than 2,000 people transition from the early to moderate stage of Alzheimer’s every day, where they are no longer eligible for current FDA-approved disease-modifying treatments approved for early Alzheimer’s that slow the progression of the disease. The science is clear: as in many other conditions, the earlier we diagnose cognitive impairment the more we can do to slow its progression with treatment and other interventions. Access to annual cognitive evaluations using validated tools promotes the detection of cognitive impairment in the earliest stages, where a healthy lifestyle and existing treatments can support a higher quality of life.

Annual evaluations enable people with, or without, cognitive impairment to have access to the best available care. Medicare must facilitate health system adoption of the most effective screening and diagnostic tools. As science continues to advance, we must maintain access to the best available tools.

Individuals living with or at risk of Alzheimer’s have the right, in consultation with their physician, to utilize the full range of FDA-approved treatment options in developing a personalized care plan that maximizes their own comfort and positive treatment response.

No public or private payer should have the power to delay or deny access to any FDA-approved treatment, cognitive screening, diagnostics, genetic counseling, or procedures that can help someone living with or at risk of Alzheimer’s. Neither the form of treatment administration (e.g., oral, patch, injection, infusion, etc.) nor the person’s care setting or personal means should determine or delay access to care.

People living with Younger Onset Alzheimer’s, those of us under 65, are forced to wait two years after diagnosis before becoming eligible for Medicare coverage. Treatment and care received in the first two years are critical to a person’s fight against Alzheimer’s disease, making coverage of care essential. To ensure that no one living with Alzheimer’s finds themselves without insurance coverage, we have a right to affordable access to the most effective treatments and tools available at the time of our diagnosis.

While current treatments represent a significant step forward, they fail to cure or prevent the disease. It is crucial that we be able to participate in clinical studies without facing undue barriers to participation. Clinical trial participation is key to the continued advancement of Alzheimer’s care, and every newly diagnosed individual has the right to be made aware of opportunities to participate.

We must also have confidence that treatments are safe and effective for people who look like us or have similar health profiles. Drugs can work differently in people of different ages, races, ethnicities, and sexes and among groups with genetic dissimilarities. Alzheimer’s research must account for these differences by appropriately supporting the participation of people with and without Alzheimer’s representing diverse populations in clinical trials for new treatments and innovations, lifestyle and longitudinal research.

The U.S. Department of Health and Human Services, in their Healthy People 2030 Initiative Objectives, remains concerned that a high percentage of people living with Alzheimer's disease, or their caregivers, are not told of their diagnosis by their physician. We cannot participate meaningfully in decisions about our health if we are not informed about our diagnosis and the options available to us.

No disease can strip a person of the fundamental right to participate in decisions about their health and well-being. Making people with cognitive impairment aware of our condition is a start but is still insufficient. We must be empowered to make informed, shared decisions regarding our treatment and care in consultation with our loved ones and doctors. To do so, we need complete information about our condition.

Diagnosis is the start of the conversation regarding Alzheimer’s, not the end. Entirely too often, the care journey for people living with Alzheimer’s consists of receiving a diagnosis and then being left alone to determine next steps. We have the right to support in creating a care plan, and to continuous, high-quality care, beginning with diagnosis and through every stage of the disease.

At the same time, we have the right to continuing, high-quality treatment for all preexisting and newly diagnosed conditions. Living with Alzheimer’s should not be a barrier to receiving high-quality care for non-Alzheimer’s ailments.

Dementia specialists and their support teams cannot be the only medical professionals who receive training on how to interact with and care for people living with Alzheimer’s and related conditions. Alzheimer’s disease does not make us immune to other conditions; there will be times when we need treatment and care from non-dementia specialists.

As our society continues to age and live well, all medical professionals should receive training in caring for people living with cognitive impairment to ensure high-quality care in any medical facility, including emergency rooms, hospitals, cancer centers, primary care practices, assisted living facilities, nursing homes, etc. This training should include sensitivity toward the involvement of care partners or other trusted individuals as part of treatment for the benefit and comfort of the person living with Alzheimer’s.