SOMETIMES YOU JUST come across something important.
This is one of those times.
I recently attended a presentation on Alzheimer’s disease, which included people with dementia and caregivers.
I came across a handout that I hadn’t seen before, produced by the Alzheimer’s Association, which I’m about to reproduce here — word for word — with their permission.
I’m going to do this because I think it’s important, from three perspectives: the physician’s, the caregiver’s and, most importantly, the person with dementia.
Here it is, verbatim:
“PRINCIPLES FOR A DIGNIFIED DIAGNOSIS
“The first statement of its kind on the subject of the Alzheimer’s disease diagnosis experience.
“Talk to me, the person living with dementia, directly. I am the person living with the disease, and though those close to me will also be affected, I am the person who needs to know first.
“Tell the truth. Even if you don’t have all the answers, be honest about what you know and why you believe it to be so.
“Test early. Helping me get an accurate diagnosis as soon as possible gives me more time to cope, live to my fullest potential and access information and resources.
“Take my memory 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 of my age. At the same time, don’t forget that the disease can also affect people in their 40s, 50s and 60s.
“Deliver the diagnosis in plain but sensitive language. My diagnosis may be one of the most important things I ever hear. Please used language that I can understand and be sensitive to how this may make me feel.
“Coordinate with other care providers. I may be seeing more than one doctor. It’s important that you talk to my other care providers to ensure everyone has the same information so that changes can be identified early and I won’t have to repeat tests unnecessarily.
“Explain the purpose of different tests and what you hope to learn. Testing can be very physically and emotionally challenging. It would help me to know the purpose of the test, how long it will take and what you expect to learn from the process. I would also appreciate the option of breaks during longer tests and an opportunity to ask questions.
“Give me tools for living with this disease. Please don’t give me my diagnosis and then leave me alone to confront it. I need to know what will happen to me, what medical treatments are available, and what support and resources are offered through the Alzheimer’s Association and my community.
“Work with me on a plan for living a quality life. Medication may help modify some of my neurological symptoms, but I am also interested in recommendations for keeping myself as healthy as possible through diet, exercise and social engagement.
“Recognize that I am an individual and the way I experience this disease is unique. This disease affects each person in different ways and at a different pace. Please be sure to couch your explanation of how this disease may change my life with this in mind.
“Alzheimer’s is a journey, not a destination. Treatment doesn’t end with the writing of a prescription. Please continue to be an advocate — not just for my medical care but for my quality of life as I continue to live with Alzheimer’s disease.
“Alzheimer’s association 800-272-3900 alz.org.”
Please, God, let it be enough.
Mark Harvey is director of Clallam/Jefferson Senior Information & Assistance, which operates through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elders partnership. He can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by emailing [email protected].