This spring I was a participant and/or test subject in three interesting programs focused on dementia and Alzheimer’s. Programs in this field are being conducted all over the United States, which speaks to the growing awareness of the increasing number of people impacted by memory and cognitive decline—both the afflicted as well as the caregivers.
Winona, Minnesota: Dementia Friendly Community
In early April, my hometown of Winona, Minnesota, became a Dementia Friendly Community, led by a coalition of citizens and business leaders “wanting to make Winona an understanding, compassionate, meet-you-where-you’re-at kind of place.” Part of the week-long program of raising awareness and providing information about dementia included a local resource fair highlighting initiatives and agencies that offer help and support to those affected and their caregivers.
I was asked to be the keynote speaker. My talk consisted of briefly telling my story of how I experience Mild Cognitive Impairment. I began with my family’s initial meeting with me when they expressed their concerns about my memory losses and asked me to seek medical help. I told of my initial denial, anger and embarrassment and shame—all of which I felt again when I heard the confirmation of a diagnosis of Mild Cognitive Impairment. I shared my ongoing journey of learning to cope, accept, and adapt, and explained how writing is my primary means of reducing my anxiety and how I find purpose.
The questions from the audience were direct. “How does your family feel about you talking so openly about your condition?” “What suggestions do you have for how to tell one’s family?” “What are specific aides you use to help you deal with memory loss?” “My partner gets so angry with me when I ask the same question over and over…how has this affected your marriage?”
Fortunately my husband and daughter were in the audience and were able to answer from the caregiver’s perspective. Basically they said they try to remember, “Mom can’t change, but I can.”
As a result of the initiative and dedicated work of the committee, you now see signs in local stores displaying “We are a dementia friendly business;” the local paper ran a series on resources available in our area; and various organizations are offering dementia-friendly activities, such as the local art museum which has a memory-friendly program every Thursday focusing on one of the masterpieces in the gallery. In essence it now feels safe to ask for help, perhaps when you are turned around in town, or don’t understand a menu item, or need someone to explain a detailed transaction…because the community has become more educated.
Alzheimer’s Disease Neuroimaging Initiative 3
The second program I am participating in is called Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI3)—a research study that will examine the relationship between clinical, cognitive, imaging, genetic and biomarker tests in order to understand the full spectrum of Alzheimer’s Disease from its earliest stages. This study is being conducted by the Northern California Institute for Research and Education with the Alzheimer’s Therapeutic Research Institute and is funded by a grant from the National Institute on Aging (NIA).
I was asked to participate in this study due to my registration on the Brain Health Registry. (I am not sure what their criteria was for inviting me to participate.) These studies are being conducted at about 59 clinical trial sites across the United State and Canada, and participants number between 1070 and 2000 and include three categories: Cognitive Normal group, Mild Cognitive Impairment group, and Mild Alzheimer’s Disease group. This is an ongoing study that will track my condition over several years.
The tests I’ve taken so far include cognitive memory tests (which I’ve taken before as part of my initial diagnosis), blood tests, imaging, MRI scans, PET scans, and an upcoming lumbar puncture. Yes, these are significant tests, some of which do involve some risk. But I am very pleased to be in this research testing program, as I feel strongly that good scientific research is the most reliable way for us to find a cause and perhaps cure for Alzheimer’s and cognitive decline. It is one more way I find purpose in what I’m experiencing.
Caring for a Person with Memory Loss
The third program I took part in was presented by the University of Minnesota entitled Caring for a Person with Memory Loss. This is the tenth year the U has offered this program for caregivers and as part of the Nursing Program. I was asked to participate in a panel discussion comprised of two men and two women, all of us dealing with various stages of memory loss. We were asked to describe our experience and diagnosis, ways we cope with our situation, suggestions of helpful tools (I always recommend a calendar, which I have blogged about), and what have we experienced that has been a ‘gift.’ I said my gifts have been experiencing more empathy for people in worse situations, learning to ask for help and realizing others really do want to help, and learning to be more present rather than ruminating and projecting to the future.
Over three hundred people attended this conference and gave the panel a standing ovation. Dozens of people walked up to me afterward and offered hugs and thanks, and many said the suggestions I have given my family (which again, I’ve blogged about) were approaches they were going to use in their caregiving.
Each of these opportunities have been a gift to me. It has been so encouraging and humbling to see the work, time and effort of so many organizations and individuals as they try to improve the lives of people experiencing memory decline, as well as the caregivers who suffer along with them. I am bolstered by the offer of hope—hope for a cure.
In closing, I want to share a statement made at this last conference which has stayed with me, even though it is perhaps more significant to caregivers than people with the condition. Nevertheless I want to pass it on, before I forget it.
If you met a person with memory loss…you’ve met ONE PERSON with memory loss. Each person is different and experiences their situation differently.