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Breaking the stigmas of dementia

Approximately 1,200 La Plata County residents have dementia (Alzheimer’s, Younger or Older Onset), Lewy Body Dementia, Posterior Cortical Atrophy, Primary Progressive Aphasia, Frontotemporal Dementia, Chronic Traumatic Encephalopathy, Vascular Dementia. It’s common to encounter someone living with dementia and/or their family without realizing it because stigma causes some to hide their diagnosis.

Kimberly Schooley recently recorded the thoughts of Durango residents Kim Martin, 69, who was recently diagnosed with Alzheimer’s, and Schooley’s husband, Dr. Alan Schooley, 53, diagnosed with Young Onset Alzheimer’s.

What do people think when they hear the word dementia?

Kim and Alan: They jump to end stage, seeing us unable to understand anything or remember our family/friends. But there’s lots of time before that stage. Don’t write us off before we’re there!

What’s your goal for educating people?

Alan: Dementia’s not just an old-person’s disease. I’m a 53-year-old pediatrician who had to retire at 51. Not everyone with dementia is on the same path. Some are old; some are young; some have rapid disease progression, while others are slow. With Young Onset, there may be children at home and few resources to help.

Kim: My dementia is just like other diseases. It shouldn’t mean you don’t invite me to parties or to lunch. I have life left to live while I can. I want people to understand the need for compassion. Stigma limits our time now.

How does dementia affect you and how could people be more compassionate?

Kim: Alzheimer’s affects my memory and ability to multitask. I struggle with electronic devices, and it takes longer to filter information. Ordering in a restaurant is overwhelming. Because I have aphasia, not finding the word I want to say, I worry the police or fire departments could misunderstand me. I don’t want pity or to hear, “You don’t look like you have Alzheimer’s” or “I have senior moments, too.” Please, recognize this disease has many stages. In early stages, we are functional, but some are reluctant to let people know because of stigma. This causes social isolation, which causes more disease progression.

Alan: My symptoms are visual/spatial – understanding how things fit together; following sequential steps; trouble with typing/writing/spelling/mathematical calculations; and visual reasoning skills. I have aphasia, especially when stressed. In restaurants people move quickly, and I lose track of what they are saying. I can’t drive, but I run, hike and walk all over town. I walked to the grocery store and bagged the items I purchased in my backpack. The cashier asked if I was a “hobo” and accused me of not paying when I had. Be patient if someone seems to be struggling/strange, even if they’re young like me.

Why is there stigma around dementia?

Kim: Terrified of late-stage dementia, people freeze and can’t figure out how to respond. They’re also forced to face their own mortality.

Alan: Working in Malawi to improve rural HIV care, I battled stigma associated with HIV to get people to seek care. Dementia carries a similar stigma.

What’s your suggestion to those who learn of your diagnosis?

Kim: Even if I don’t look like I have Alzheimer’s, this is what Alzheimer’s looks like – for me, for now. Ask questions; don’t make assumptions; fill in the word I’m looking for; and don’t be afraid to laugh with me – my sense of humor is great.

Alan: I’m the same person, but some things are difficult for me and it takes longer to do things. So give me time.

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. Alan L. Schooley, M.D., is a retired pediatrician who worked for the Indian Health Service and provided HIV care in Malawi, Africa for seven years.