April 25, 2012
Every individual with Alzheimer's has a diagnosis story. Receiving the news marks the beginning of a drastic life change for the individual and his or her family, and the way a doctor communicates that change can hugely impact the nature of their Alzheimer's journey.
From assessing Alzheimer's symptoms, to delivering the diagnosis and putting together a disease management plan, all medical professionals involved in the diagnostic process must remain sensitive to the patient's dignity and right to know the details.
From the Alzheimer's Association's 2008 Voices of Alzheimer's Report, summarizing nationwide town hall meetings for people with early stage dementia, the following accounts draw a telling picture of dementia patients' desire for involvement and respect.
"I describe the process as a big pile of rocks on the table and with each test, they remove a rock until the only rock left is the one labeled 'Alzheimer's.' The difficult part as the patient was that I really didn't know how many rocks were on the table. I didn't know why I was taking another test—just that I was asked to take another and another and another. Bring the patient into the process a little more and help us understand why we're taking certain tests, where we think we might be headed, and what the next steps are." —Respondent 1
"We're taken into the room and he's being all perky and he says, 'Oh, you have dementia.' He closes the folder and walks out the room and leaves me there with my daughter. I literally had to run after him—he was going for his next patient." —Respondent 2
Based on the feedback it received during its nationwide survey, the Alzheimer's Association developed these principles of a dignified diagnosis.
Principles of a Dignified Diagnosis
- Talk to me directly, the person with dementia.
- Tell the truth.
- Test early.
- Take my concerns seriously, regardless of my age.
- Deliver the news in plain but sensitive language.
- Coordinate with other care providers.
- Explain the purpose of different tests and what you hope to learn.
- Give me tools for living with this disease.
- Work with me on a plan for healthy living.
- Recognize that I am an individual and the way I experience this disease is unique.
- Alzheimer's is a journey, not a destination.
(Download a PDF of the Principles for a Dignified Diagnosis brochure.)
The last principle, "Alzheimer's is a journey, not a destination," indicates a need for the diagnostic process to include a plan for the road ahead. As another respondent in the Alzheimer's Association's 2008 Voices of Alzheimer's Report said,
"My experience was that once you're diagnosed, you're told, 'Here's a prescription for Aricept. I'd like to see you in a year.' I've talked to neurologists who say, 'Once I find out what's wrong with you, I feel like I did my job.' But that's just the beginning for the treatment model."
To avoid your Alzheimer's patients having similar experiences, take the time to treat each one as you would want a doctor to treat your own parent or spouse. Your medical knowledge and expertise will be most beneficial when communicated to your patient in the right way and used to guide them for the journey ahead.
Visit the Alzheimer's Association for more tips on sharing a diagnosis or explore the Home Instead Senior Care® network's services and Alzheimer's and dementia resources to share with patients and family caregivers.
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