Alzheimer's group supports principles for dignity
Alzheimer's group supports principles for dignity
Principles result from town hall meetings
In an effort to improve the physician-patient dialogue for patients diagnosed with Alzheimer's disease, the Alzheimer's Association suggests that physicians keep in mind its Principles for a Dignified Diagnosis.
The principles are an outgrowth of the association's 2008 report, "Voices of Alzheimer's Disease," which was based on four regional town hall meetings hosted by the association. The town hall forums were attended by more than 800 participants, including 300 people diagnosed with Alzheimer's.
"There are 5.3 million people living in the United States with Alzheimer's disease, and I think there is still much to be understood about how we can serve the folks in the earliest stages of the disease, especially, which is a growing population," says Shelley Bluethmann, MA, MPH, director of early-stage initiatives for the national office of the Alzheimer's Association, based in Chicago.
That was the impetus for the town hall meetings — to learn more about the people living with the disease.
"As a way to gauge exactly how we could be most supportive and helpful to that population, we decided to host this series of meetings around the country to really ask the people living with dementia themselves what were their biggest challenges, and what they thought would be most helpful — especially at those earliest stages," Bluethmann tells Medical Ethics Advisor.
Four themes came out of those town hall meetings related to the challenges faced by patients with Alzheimer's. One theme was "about the stigma they face upon being diagnosed and what a burden that is to them, on top of a difficult diagnosis — having to face that stigma with family and friends and co-workers, for those who are under 65 and still in the workplace," Bluethmann says.
The association also found that there was an "enormous amount of angst around the diagnosis experience itself, and along with that, some dissatisfying and challenging interactions with medical providers."
Hence, the principles were developed to serve as a guide for physicians in addressing patients when delivering the diagnosis of Alzheimer's.
The principles offer a "different kind of perspective and insight on that process that they've never had before," Bluethmann says. "You know, this isn't something that they've read about to this point in their medical journals, and it really sheds a light on the importance of engaging that person with Alzheimer's and dementia in the whole process."
Principles and actions
In addressing the matter of stigma and difficult diagnosis experiences, the first principle states: "Talk to me directly, the person with dementia. I am the person with the disease, and though my loved ones will also be affected, I am the person who needs to know first."
"A lot of folks said to us [that] as soon as they were diagnosed, then they felt a little bit cut out of the process," or "marginalized," Bluethmann notes. "And this is just a way to sort of bring everybody together and really improve that communication and collaboration."
The second principle instructs physicians to "Tell the truth. Even if you don't have all the answers, be honest about what you do know and why you believe it to be so."
The third principle advises: "Take my concerns seriously, regardless of my age. Age may be the biggest risk factor for Alzheimer's, but Alzheimer's is not a normal part of aging. Don't discount my concerns because I am old. At the same time, don't forget that Alzheimer's can also affect people in their 40s, 50s, and 60s."
Another point to come out of the town hall meeting process was that patients often felt, after the diagnosis was made, "a little bit alone about what to do next."
"So, where we really come in is provide that link to community support resources and other kinds of social support resources that are so important after that diagnosis is made, in addition to the medical treatment and other treatment options that are available," Bluethmann says.
Prior to the release of the principles, Bluethmann says, the early-stage advisory group met with people living with the disease, as well as "some of our partners and friends in the medical community, and one of those groups was the American Medical Association. So, when we shared with them what we were planning to do, they were very enthusiastic, very supportive . . . Having the AMA be supportive of this was obviously very encouraging for us."
In announcing the principles in February, AMA President Nancy Nielsen, MD, issued a statement that reads: "Patients with Alzheimer's disease face many challenges as they strive to maintain a normal life, and physicians are committed to helping ease the burden with high quality health care.
"The AMA applauds the Alzheimer's Association for bringing forward the patients' perspective on compassionate care, as Alzheimer's patients, their families, and their physicians battle the disease together."
Thus far, the Alzheimer's Association has distributed 70,000 copies of the principles to physician audiences, and the group has plans to translate the document into two other languages, Chinese and Spanish, for starters.
Bluethmann thinks "much more can be done to continue to engage people, especially [those] with Alzheimer's, in their own experience — and it is something that we are working on, as well, to reach out to the physician community and talk to them about what they need and how we can be helpful [to them], as well."
One of the areas that needs more attention is physicians' awareness of younger-onset Alzheimer's disease. One of the co-authors of the principles, Steve Hume, MD, was diagnosed with younger-onset Alzheimer's disease in May 2007 at the age of 61.
"Younger onset is a form of the disease that affects people under 65, so that certainly has unique characteristics to it that we certainly would support more discussions and more collaboration with the physician community [on]," Bluethmann says.
- Alzheimer's Association, Chicago. For additional information and the complete list of principles, please visit www.alz.org.
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