People with Alzheimer’s have right to know

The recently released Alzheimer’s Association “2015 Alzheimer’s Disease Facts and Figures” report found that only 45 percent of people with Alzheimer’s disease, or their caregivers, say they were told the diagnosis by their doctor. In contrast, more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate) say they were told their diagnoses.

The “2015 Facts and Figures” report also found that people with Alzheimer’s, or their caregivers, were more likely to say they were told the diagnosis by their doctor after the disease had become more advanced.

This is of concern because learning the diagnosis later in the course of the progressive brain disease may mean the person’s capacity to participate in decision-making about care plans, or legal and financial issues, may be diminished.

People with Alzheimer’s disease or a related disorder have the right to know the truth about their diagnoses so they can make informed healthcare decisions. According to the Alzheimer’s Association, telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a respectful and responsible manner that avoids unnecessary distress.

Thursday, April 16, is National Healthcare Decisions Day — a collaborative initiative among national, state and community organizations committed to ensuring that all adults have the information and opportunity to communicate and document their healthcare decisions. Let’s work together and bring awareness to this issue to ensure people with Alzheimer’s disease are given the dignity of a diagnosis. It is critical that people with dementia can engage in important conversations and play an active role with their loved ones in planning for their own futures.

For physician, patient and caregiver resources on the topic of providing a dignified diagnosis, call our 24/7 Helpline at 800-272-3900. Details on the “2015 Alzheimer’s Disease Facts and Figures” report can be found at www.alz.org/facts.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research.

The Delaware Valley Chapter, headquartered in Philadelphia, is the local arm of the national organization. The chapter, with regional and branch offices in 18 counties in Delaware, South Jersey and Southeastern Pennsylvania, provides programs and services to more than 294,000 individuals with Alzheimer’s disease or a related disorder.

More information is available by calling the 24/7 Helpline at 800-272-3900 or online at www.alz.org/delval.

Wendy L. Campbell
President and CEO,
Alzheimer’s Association
Delaware Valley Chapter
Philadelphia

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