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Sun Downing: Distress Message from People Living with Dementia

Sun downing–a period of seemingly increased confusion and agitation that may occur in the afternoon/evening but can occur at any time–is a behavioral symptom of distress. Sun downing, like many dementia-related behaviors, is treated like “just one of those things.” Like an inevitable behavior that caregivers just have to put up with.

I call bullshit.

Having dementia does not alter physical, emotional, or social needs. Instead, the brain changes from dementia make it tougher for people to have those needs met. Right now, I’m running my first-ever Dementia Behaviors Master Class. In this week’s module, I explained why certain behaviors–illusions, delusions, hallucinations, sexual overtures, and sundowning–occur, what needs may be triggering those behaviors, and how to lovingly respond to those needs. I do this for a living, so I know that some of these behaviors can become severe enough to require medication. However, by addressing the need that is fueling specific behaviors, I have managed many of these behaviors without medication–or with much less medication.

Here is the sun downing video:

I’m really happy that I created this Dementia Behaviors Master Class. I feel like I’m helping the caregivers who are part of this special group. In fact, I had an epiphany this week. I realized that I am doing more than coaching about behaviors. I am helping family caregivers reconnect with their family members in a loving way. I often hear, “that’s not my mother anymore” or “my husband is gone.” Are they? Or maybe we haven’t quite figured out how to navigate through the brain tangles and reach their core personhood?

I had such an experience at the age of 17, working as a nursing assistant in Saint Joseph’s Manor. This nursing home in the Philadelphia suburbs was run by the Sisters of the Holy Redeemer. Those nuns took elder care seriously. My charge nurse, Sister Barbara, believed that people living with dementia were “in there somewhere” and you treated them as such, because you never knew when they would make an appearance. This meant you interacted with the residents as if they could comprehend everything you said. You paid 100% attention when providing care. God (and Krishna and Allah and Yahweh and Zeus and Thor) help you if you had the TV on and was watching it instead of focusing on the resident. Hell hath no fury like pissed off Sister Barbara.

I followed their example–I knew nothing and this seemed as good as an approach as any. I was feeding a resident named Mary. She seemed to be in another dimension, having mumbled conversations with people I couldn’t hear, gazing about the room and smiling and nodding at people I couldn’t see. One morning, as I was feeding Mary her breakfast, I became utterly fascinated watching her interact with beings I could not see. I looked around at all of the black and white pictures spanning the 1930s, 1940s, and 1950s. I saw Mary as a raven-haired beauty wearing furs and flowing gowns, surrounded by laughing, happy people. I became lost in those pictures, wondering about Mary’s glamorous past.

“Hello, you.” I jumped. I was standing at the bedside to Mary’s left, holding a spoon of cream of wheat suspended in mid-air. She had turned her head–something she never did–and was staring right at me. Her milky brown eyes were suddenly clear and focused.

“Hi, Mary.” She smiled. I smiled. We both saw each other. I was amazed!

“Are you still hungry?” I put the spoon of cream of wheat to her lips. And that quickly…she was gone again.

That wasn’t the last time. I had several similar events until Mary passed the third year of my four-year stint at The Manor. Even though it is 40 years later and I’ve amassed a huge amount of education and experience, I still believe that people living with dementia are present; I just have to figure out the best ways to reconnect and share those approaches. Stay tuned!

Categories: Dementia

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Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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