SOMETIMES YOU ONLY encounter something important.
This is one of those times.
I recently attended a presentation on Alzheimer's disease, including people with dementia and caregivers.
I came across a hand-out that I had not seen before, produced by the Alzheimer's Association, which I will reproduce word for word with their permission.
I am going to do this because I think it is important, from three perspectives: the doctor, the caregiver and, most importantly, the person with dementia.
Here it is, literally:
"PRINCIPLES FOR A DETERMINED DIAGNOSIS
"The first explanation of its kind on the subject of the diagnosis of Alzheimer's disease.
"Talk to me directly, the person who is living with dementia. I am the person who lives with the disease, and although those close to me are also affected, I am the person who needs to know first.
"Tell the truth. Even if you do not have all the answers, be honest about what you know and why you think it is.
"Test early. By making a correct diagnosis as soon as possible, I have more time to deal with it, use my maximum potential and gain access to information and resources.
"Take my concerns about my memory seriously, regardless of my age. Age can be the biggest risk factor for Alzheimer's, but Alzheimer's is not a normal part of aging. Do not discount my worries because of my age. At the same time do not forget that the disease can also affect people aged 40, 50 and 60.
"Provide the diagnosis in clear, but sensitive language. My diagnosis is perhaps one of the most important things I have ever heard. Please use the language I understand and be sensitive to how I can feel.
"Coordinate with other health care providers. I may see more than one doctor. It is important that you talk to my other health care providers to ensure that everyone has the same information so that changes can be identified early and I do not 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 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 pauses during longer tests and an opportunity to ask questions.
"Give me tools to live with this disease. Please do not give me my diagnosis and 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 by the Alzheimer's Association and my community.
"Work with me on a plan to live a good life. Medication can help some of my neurological symptoms change, but I am also interested in recommendations to keep myself as healthy as possible through nutrition, exercise and social commitment.
"Recognize that I am an individual and the way I experience this disease is unique. This disease affects every person in different ways and at a different pace. Make sure you explain how this disease can change my life with this in mind.
"Alzheimer's is a journey, not a destination. The treatment does not end with the writing of a prescription. Please remain an advocate – not only for my medical care, but also for my quality of life, while I continue to live with Alzheimer's.
"Alzheimer's association 800-272-3900 alz.org."
That is it.
Please, God, let it be enough.
Mark Harvey is director of Clallam / Jefferson Senior Information & Assistance, which is active through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elsewhere partnership. It can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by e-mailing [email protected].