People with dementia do not recognize their family, they’re angry and paranoid, they wander off if not watched closely, and they completely lose their ability to communicate. That’s what many people think, but it’s simply not true. Many people with dementia live independently and happily for decades after diagnosis. Many of us with mild cognitive impairments may live the rest of our lives without our symptoms worsening.
A Spectrum of Symptoms
I’ve been reading a book called, The Spectrum of Hope: An Optimistic and New Approach, to Alzheimer’s Disease and Other Dementias” by Gayatri Devi. Dr. Devi is a neurologist who specializes in working with dementia patients. It is her contention that no case of dementia, (or I conjecture, cognitive impairment), is the same, that they are on a spectrum. When she talks about her patients she describes each person’s condition something like this, “Rapidly progressing Alzheimer’s with mild/moderate memory loss, and good language and living skills.” She describes everyone with a diagnosis, and a measure of their memory, language and living skills. That’s really gotten me thinking. According to Dr. Devi we all have different combinations of abilities.
I pulled out my neurocognitive evaluation report, and I’ve been trying to deduce what my description would be–maybe “Stable Mild Neurocognitive Disorder with mild memory issues, and good language and living skills?” I’m rating myself pretty high, because I think the point of being diagnosed with a mild cognitive disorder/impairment is that I am still good at most things, or I can compensate with my cognitive reserve. I worked as a research librarian most of my adult life. I didn’t always understand what I was looking up for people, but I learned enough about each topic to be able to find good information. Most days at work I stretched my brain. I built up my cognitive reserve.
Technology and My Cognitive Reserve
I’ve read that because of technology, people can now cope with cognitive impairment more easily. I can look up synonyms when I have trouble with word retrieval, or type in most of the phrase I’m trying to remember and see if the whole phrase pops up for me. I’m learning how to use a virtual assistant, so I can use my voice to ask questions while I’m driving. I can also use a virtual assistant to take notes about things while I still remember them. I often pick up my phone, and I’ve already forgotten what I was going to do. With a virtual assistant I can quickly add reminders to my calendar, and items to my to-do lists. I used to think that Siri commercials were silly, but now I’m studying them to understand how talking with my phone or computer works.
Next week I will be traveling to Minnesota to visit my family. On the first day I’m renting a car at the airport, and I’ll be driving two hours away where I will visit a friend before I take the rental car back to the airport and start my family visit. This week I was talking with my husband about Dr. Devi’s way of describing cognitive impairment (with measures of memory, language and living skills), and he asked how I thought I was doing on living skills, in particular how I thought I’d do traveling alone. I know how keep track of whether my flight is delayed or canceled. Things will get a bit fuzzy for me if I need to rebook my flight, but I can do that. I know how to look up the airport map, so I can find the car rental place. I know how to use my phone to navigate to my friend’s house. I know how to avoid traffic and construction, and how to choose not to drive on the freeway if I wish. Traveling alone I’ll just take my time, and make sure I know what I’m doing before I commit myself. That may involve pulling off the road and looking at the route again, or staring at the monitors in the airport longer than other people, but I can do it.
Using My Cognitive Abilities
I need to continue to stretch my cognitive abilities. In her book Dr. Devi talks about how her patients regress when their caregivers start doing things for them that they can do for themselves. It may take me longer to do things, but it’s important that I continue to do things for myself. My husband helped me find the best airfare deal for my upcoming trip, but I made my own car and hotel reservations. I hate making choices like that, but I can’t let that stop me. I made car and hotel reservations that suited my abilities. There were cheaper car rentals, but I chose an agency that’s in the terminal instead of using a shuttle, and I chose a hotel that I know I’ll feel comfortable in. Those are things that I can and should decide for myself.
Reading About Dementia
One caveat I have about reading Dr. Devi’s book is that it’s written about people with dementia, not people with mild neurocognitive disorders (mNCD) or mild cognitive impairment (MCI). I’ve found that in order to find thorough information about cognitive impairments I need to read books about dementia. There just aren’t many books written about mild cognitive impairments. But, if I’m going to read books about dementia I need to make sure that I don’t identify too closely with the people with dementia. I’m healthier than those people. In this book in particular I skimmed the last half of the book, because of information like delusions, paranoia, and caregiver frustrations. I’m not there yet. I might never get there.
All in all I found Dr. Devi’s book useful reading, because of her assertion that every person with dementia is different. It’s helping me ignore the gloomy messages I get in popular media. I’ve learned that some people with dementia continue to have fairly good memories, and there are memory exercises that can help improve working memory. I heard the phrase recently, “Watching her mother slowly lose her mind” in connection with a person with dementia. I hear that quite a lot, and it helps me to know that cognitive impairments affect each person differently, and I don’t need to worry about progressing to a specific set of dementia symptoms. I need to make sure that I don’t lose confidence in my remaining abilities.
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