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With Alzheimer’s diagnosis, ‘the unknowns are endless’

As part of an ongoing series of columns about what it feels like to have mild cognitive impairment as a result of an Alzheimer’s diagnosis, I’m including this about typical progressions.

I’ve been going to two support groups run by the Banner Alzheimer’s Institute in Arizona for a couple of years now. They invited me to join a group of patients who have cognitive impairments to help newly diagnosed patients deal with the implications of their diagnosis. Needless to say, there’s a lot to deal with.

There’s so little we know about the progression of dementia and every patient’s progression is different. Having as much information and support as possible matters so much to the patient. When will I be a burden? What will I do when this or that happens? Do I have one more year or 20 more years? For me, a key question is, “Will I be capable of making the decision to end my life by withholding food and water when it comes to that time?”

The unknowns are endless.

The scientific literature indicates the average time between diagnosis and entering the second stage of dementia, where more aid is needed for daily living, is between three and eight years. However, people have been known to go on in that mild cognitive impairment stage for many years beyond that.

Which am I? How will I be affected? More importantly to me, how will my husband be affected? How will this change his life? These questions wear heavily on my mind, as they do on others in my support groups. Because the ongoing unknowns cause so much worry, and even worse anxiety, lives are affected by not being able to enjoy the lives we have now.

Banner has compiled the comments of people actually suffering from the disease. They have created a pamphlet to help everyone know about common concerns and questions.

I thought I’d share some of the progression and stages. Perhaps you know someone who has been recently diagnosed. First, in the early stage of mild dementia, called the mild cognitive impairment stage, the changes that are noticed are short-term memory loss, loss of ability to pay attention and focus, and difficulty finding words. Examples of the support we need at this stage are help with cleaning, cooking, handling finances and driving.

Next, the changes that occur during the middle stage of moderate dementia include increasing short-term and long-term memory loss. There is also loss of expressive and receptive language. The support needed is around activities of daily living, including grooming, bathing, dressing, etc.

Then, during late stage or advanced dementia, the changes include severely impaired memory and reliance on nonverbal communication. At this point, the support needed is complete instrumental activities of daily living.

Dementia itself is defined by memory, thinking changes and the loss of the ability to function that are severe enough to impact all of daily life.

You can see why those of us with dementia and, certainly, our care providers worry.

Added to that, there is no way to know if we will recognize when we move from one stage to the next.

Will the changes be so gradual that neither the patient nor the care provider recognizes how far things have progressed? Will both be appalled when they look back and see the changes that have taken place in their lives. Will we recognize when the time has come for assisted-living or something more final?

Will we need to both be willing to pay attention to those who are not so close in our daily lives but who have invaluable perspective to share?

These are just some of the things that pervade my mind and the minds of fellow support group members, and the caregivers at our side.

Kim Martin splits her time between Hesperus and Durango, and is a former instructor of Asian history, writing and comparative cultures at Fort Lewis College.