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What’s a Typical Day with Mild Cognitive Impairment?
Monica Delgado, with Mentors Tigist Hailu, MPH and Jason Karlawish, MD
“There's a group of them that stayed together and one single one off to the side, pretty fair distance, but most of the time they usually all stay in a bunch. I looked at that and I thought, "That's how I feel when I'm with a group of people. I always feel a little isolated.” I used to be ... the one talking in that
group and now I'm not quite as outgoing as I used to be.”
Why ask, “What’s a Typical Day?”● Diagnosis
○ Allows for understanding of daily life and severity of condition○ Illustrates what it is like to live with the symptom of memory loss
■ Understand suffering to implement appropriate interventions■ Often times, implement a more safe, social, engaged lifestyle
● Patient and caregiver reflection and future planning
What is Mild Cognitive Impairment (MCI)?● “Intermediate stage between the
expected cognitive decline of normal aging and the more-serious decline of dementia.” 1
● “Slight but noticeable and measurable decline in cognitive abilities.” 2
● Approximately 15-20% of those over 65 have MCI 2
● Increased risk of Alzheimer’s1. Mayo Clinic2. Alzheimer’s Association
Project Aims
● Foster awareness and understanding of MCI
● Increase representation and diversity of experiences with MCI
● Help others living with MCI
...using a photo-elicitation method
Methods1. Recruitment2. Visit #1: Consent/Tips3. Photo-taking4. Visit #2: Photo-Elicitation Interview5. Visit #3: Portrait
Visit 1: Consent/Tips● Very public project● Consent and safety of participants and photo subject(s)● Reminder of intentions for photos
○ Balancing information with intentional ambiguity
Visit 2: Photo-Elicitation Interview● Select photos● Brief ice-breaker● Move through photos and ask questions
○ Tell me why you chose to share this photo with me.○ What do you see in this photo?○ How does this image relate to your MCI diagnosis?
● Final thoughts
Sample Characteristics (n=5)● Gender
○ Male (3)○ Female (2)
● Age○ Male (72)○ Female (73)
● Race/Ethnicity○ African American (2)○ White, non-Hispanic (3)
● Education○ High school graduate (1)○ College graduate (2)○ Graduate education (2)
● Marital Status○ Married (3)○ Divorced (1)○ Never married (1)
Results: Themes● Social anxiety and stigma● Role of hobbies● Attitudes toward the future● Importance of caregivers
Social Anxiety and Stigma ● Fear of forgetting important names, words, and locations● Fear of forgetting directions● Feeling exploited and blamed as a result of having MCI
“They asked me to do that [to make a speech], but I told them, "Look, I'm backing out of it, because I don't want to go up and, for a moment, read, and there's silence because I can't remember, or I can't see what it is I'm reading." I'm not [going to do it], I don't have the confidence. This thing, dementia, this ... It bothers me to no end, that I have, in my mind, very fluently, fluidly and fluently, what it is I want to say. Once I open my mouth, I just lose track. I can't latch on to what it is that I'm trying to say or present. I just can't get the words. I can't. [But] the animal is special because it treats you like no one else will treat you. Animals are not judgmental. They're always there.”
Social Anxiety and Stigma
Social Anxiety and Stigma“What I find though, is that when people find out this [diagnosis], … they will use it against you. If you do something or you say something. "You know she ain't too right. You know she can't remember nothing." And it's not that way all the time. That's their escape to use you as their scapegoat in a lot of ways. Yeah. What can you do. It is tough enough that you are tough on yourself.”
Hobbies● Part of safe, social, engaged lifestyle● Continued hobbies can provide sense of routine and normalcy● Continued hobbies can cause frustration● New hobbies can serve as a memory-strengthening exercise
Hobbies“In my card creations, my frustration comes with me starting out with a gun-ho enthusiasm and ideas, but it fizzles out very quickly. Why? Because I have always had problems with coordination. Too many choices. With putting colors together, to what dyes to use, dexterity, misplacing something I just laid down and so on, not to mention begin diagnosed with ADHD and the brain tumor I had, are also factors [that make it difficult].”
Hobbies“It is a mind exercise, but it's also a discipline exercise. It has to be discipline and you're training your fingers. It's muscle memory. Playing guitar is muscle memory. So you're training your hand to go to the right strings, and the trick is to do it fast. Basically I know all the chords, so it's a matter from going from the C to the A to the A minor to the whatever the cord is, and do it ... now I don't even look most of the time and most of the time I hit the right strings.”
Attitudes Toward the Future● Fear of losing independence, routine● Desire to improve memory within the confines of available strategies● Accepting cognitive decline● Effort to consciously shift toward a positive perspective
Attitudes Toward the Future
“You don't like to think that your brain's getting soft, and besides which, it's embarrassing if you forget things. I don't want to be sitting on my bench one of these days and not remember how to get home.”
Attitudes Toward the Future“As far as memory goes, it's limited. It's not expansive. I can't expand this. It just has limited storage. That's my memory now. It's very limited.
I'm getting older, so I guess this memory thing is going to get worse. I'm fine with that right now. I have to be fine with it, because there's nothing organically that I can do about it. Right now, I have to do everything to try to … strengthen my memory. It's tough. Aging can be painful, but it can be more painful if you dwell on it. I have to get off that. I've made progress.”
Importance of Caregivers● Serve as “secondary memories”● Assist with daily tasks that cause anxiety, such as driving● Emotional support and comfort● No judgment or stigma
Importance of Caregivers
“She is a diary to my memories, because she can remember, it's failing now, but she can remember things I told her and things that have happened, and what I attempted to do along the way, and that she intervened and put me back on a straight path, you know, helped me.”
Importance of Caregivers
“The craziest things come out of my mouth and I can laugh with him and not cringe or feel upset with Bob.
He's always there when I need him. Always. Always. He meets every one of my needs all the time. He's laid back and easygoing where I'm hyper and he just lets it go in one ear and out the other. Now that he has hearing aids he just takes them out on the weekend. That solves that problem.”
Results from Using Photo-Elicitation● Occasional difficulty keeping participants on topic
○ Photos to jog memory○ Often resulted in rich insights
● Varied responses to interview questions ○ Perception of MCI○ Lack of perception
■ Rephrasing and follow-up
Raising Awareness: Traveling Exhibit
● On rotation with various community partners
● Includes stories, participant photos, and portraits
● Local, state, national impact
Raising Awareness: www.MyTypicalDay.org
● Permanent presence● Objectives:
○ Awareness○ Education○ Storytelling
Takeaways● MCI recognized as a cognitive condition, but impacts mental health as well● Photo-elicitation and the Typical Day has proved helpful for:
○ Researchers○ Participants○ Public
Thank YouJason KarlawishTigist HailuBenjamin BakerDamari McBrideKristin HarkinsTerrence CaseyChloe ElmerShana StitesSara Hachey
JackKathleenAlvinTerraineRobert
Joanne LevySafa BrowneSUMR 2017 Cohort
Questions?
Sources1. http://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/hom
e/ovc-202060822. http://www.alz.org/dementia/mild-cognitive-impairment-mci.asp3. https://www.alz.org/documents_custom/2016-facts-and-figures.pdf4. https://www.forbes.com/sites/jasonkarlawish/2016/08/05/an-alzheimers-doctor
-reveals-his-most-powerful-technology/#48754ece75515. http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_version_2.pdf?docI
D=7161
