Telling someone that they have been diagnosed with an uncurable disease—like Alzheimer’s—must be incredibly hard. But, according to a new report released by the Alzheimer’s Association, many people diagnosed with Alzheimer’s just aren’t told.
According to a story on NPR, “Doctors are much more likely to level with patients who have cancer than patients who have Alzheimer’s.” The story continues:
The report found that just 45 percent of Medicare patients who’d been diagnosed with Alzheimer’s said they were informed of the diagnosis by their doctor. By contrast, more than 90 percent of Medicare patients with cancer said they were told by their doctor.
“What we found is really shocking,” says Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.
“This is reminiscent of what happened in the 1960s and 1970s with cancer,” she says. “But that’s changed now, and it really needs to change for Alzheimer’s as well.”
In a press release about the report, the Alzheimer’s Association reveals that many health care providers avoid disclosing a diagnosis because they are afraid “of causing the patient emotional distress.” Yet, the opposite has been found to be true; in fact very few “become depressed or have other long-term emotional problems because of the [Alzheimer’s] diagnosis.” And there are benefits of disclosure as well:
The benefits of promptly and clearly explaining a diagnosis of Alzheimer’s have been established in several studies. Benefits include better access to quality medical care and support services, and the opportunity for people with Alzheimer’s to participate in decisions about their care, including providing informed consent for current and future treatment plans. Knowing the diagnosis early enables the person with Alzheimer’s to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research.
Fortunately, there are tools available to help foster communication between health care providers, family members, and individuals diagnosed with dementia. The Alzheimer’s Association provides tools for doctors on both diagnosis and communication, including videos on how to deliver the news in a sensitive, supportive way and a fact sheet on why this communication is so important. There are also tips for family caregivers to communicate with their loved ones and to help someone with Alzheimer’s communicate effectively.
Assisted Living providers can also help encourage sensitive communication about dementia care needs. Through its Voice of Assisted Living program, CALA has developed speeches and Powerpoint presentations for members to help educate the community-at-large about about long-term care, such as in the presentation on “The Growing Impact of Dementia,” where tips are provided on how to talk about care options in an open and ongoing way that builds trust and comfort.