Looking After Lizzy - A Patient with Sundowner's Syndrome

Mixed dementia arises when Alzheimer’s (AD) encroaches on another dementia, the two dementias occurring concurrently. With Lizzy, the underlying dementia is known as Sundowner’s. Research has revealed that in almost half of all seniors with dementia, signs of both AD and Multi-infarct (Vascular) Dementia emerge. This latter dementia, caused by vascular issues, is the type with which AD co-exists the most, with Sundowner’s coming next after that.

Jenny: Hello, my name is Jenny. I was filling in for Anna, Lizzy’s daughter, who was away on business for a few days. My own mother is a retired registered nurse, and she and I took turns to give Anna frequent respite spells so that she could break away from the house and get some fresh air. As long as we kept some kind of rotation going, we were all able to do what needed to be done without burning out.

As for me, I had already cared for a prior patient with Alzheimer’s, and I didn’t mind caring for Lizzy for three or four days at a time. Let me be clear though, even a few days in one stretch could be extremely stressful, but knowing that someone else would soon take over gave me the mental stamina to persevere.

Things got wildly different on that day however.

Anna: Hello, I’m Anna, Lizzy’s daughter and primary caregiver. I’m also a teacher.

At first, some three or four years ago, Lizzy’s symptoms were almost identical to those of AD, and the doctors told us that this was typical. Mom had memory and cognitive issues as well as bouts of confusion. In time though, the particular symptoms of “Sundowning” began to show up.

"Sundowner" and “Sundowning” are derived from “sunset”, implying sleeplessness, or a state of agitated sleep patterns. The terms “nocturnal delirium” and “sleep disturbance” are also commonly used for this insufficiently explained malfunction of the brain. At the late afternoon hour when the sun is setting, this syndrome acquires its own symptoms: added disorientation and confusion, irritability that often spills over to aggravated agitation.

On that fateful day when Jenny was on duty, Mom’s brain took her to unchartered territory.

Geoff: Hello, my name is Geoff, and I’m the owner of the homecare agency that assists clients with their aspirations for long-term care at home. When Anna first came to us, all she wanted was the occasional weekend relief caregiver for her Mom, which was easy enough since Lizzy at the time was much simpler to manage. As Lizzy’s condition worsened, however, I had to provide the same persons over and over again, for Lizzy wouldn’t take too kindly to new helpers.

Naturally, when it came to patients with dementia, we had to be diligent with the caregivers we chose, with emphasis on inordinate patience, “thick skin”, meaning aides who wouldn’t get easily flustered, and tons of innate compassion. Caregivers like that were very special and usually highly prized by homecare agencies.

In this case, though, Anna herself was one of a kind. At the agency, we frequently got hired by the kind of adult children of aging parents who were on the exact opposite spectrum of Anna. They would be in a hurry to sell their parents’ homes, pocket some of the proceeds, and place their parents in “homes”. Anna’s love for her Mom was exemplary. She felt that her Mom had cared for her all her life and that it was now her turn to do the same in reverse.

"Anna's love for her mother inspired all of us who came in contact with her."

Anna: Nothing quiets down an irritable Sundowner’s patient as a familiar routine, for well-practiced routines mitigate the insecurity and confusion that often arise from the unknown.

Sundowner patients in assisted living and other long term facilities typically start exhibiting agitation in the 4 to 7 p.m. time frame each day. This coincides with the time when a facility’s hubbub is at a high, with many families visiting residents, with a large number of people preparing for or having dinner, and with staff shift changes going on.

I related Mom’s frequent agitation to tiredness, stress and excessive sensory stimulation, including lighting. I thus taught the rest of the team to always give Lizzy her supper at 4 PM, then to take her for a 10-minute walk if she was up to it, and finally into her room where the lights would be dimmed. This seemed to work just fine, for she would be given her meds and go to sleep.

I also asked the other caregivers to spread their mattress on the floor between Lizzy’s bed and the bathroom, so that if Lizzy got the urge to head for the bathroom, she would have to wake them up.

Jenny: On the afternoon of that day, Lizzy’s appearance and behavior had changed. Her gentle face had acquired a fixed grimace, and she was showing unusual signs of disorientation and paranoia. She paced back and forth, and her body language was anything but friendly. Come mid-afternoon, when that hadn’t changed, I called my mother and told her what was going on. She didn’t seem worried, saying it was probably a passing delusion that was unsettling her. Lizzy was on a special drug for Sundowner’s that consisted of antipsychotic chemicals with dosages that were tailored for her. Thus I was told to give her the drug then instead of at bedtime.

"At sunset, the demons got riled..."

Nagging at the back of my mind was the fact that Anna wasn’t due to get back until the evening of the following day. She was tough and wouldn’t get rattled because an old lady suddenly got quirky. For my part, I just wanted that day and night to be over. At sunset, when daylight was fading, Lizzy started really scaring me. She was extremely agitated, angry, scared and disoriented, and she paced erratic-style all around the house while humming a weird refrain. How was I ever going to get her to go to sleep? I called my mother again and updated her on what was going on. She said to give Anna another pill, and that she’d call the doctor.

Geoff: I was obligated by our protocol at the agency to conduct an investigation, and here’s how the story was recounted to me. At first Jenny thought she was imagining it—that she was having a nightmare. But what was at the door turned to insistent banging. A rush of adrenalin woke Jenny up instantly, and she looked up at the empty bed next to her in disbelief. Lizzy wasn’t there. She rushed up to look inside the bathroom, but no Lizzy there either. Where could she be? In the meantime, the banging at the door caught her attention, and she put something on and scrambled to the door.

Jenny: I still to this day can’t believe the sight that greeted me there. There were two burly police officers, gun-belts and all, with Lizzy’s tiny frame in between them, still in her night gown.

“Does this lady belong here?” Asked one of them.

“Lizzy!” I exclaimed, my bewilderment at a peak. “Yes,” I said, trying to catch my breath, “Yes,” I repeated, as I started ushering Lizzy in.

“We found her by the highway,” said the other cop. “Another couple of minutes and she would have strayed right into traffic.”

“I’m so sorry,” I said. “This won’t happen again.”

“Lady, these things happen, but please let her wear a bracelet. We had to wake up two other families before we came here.”

“Yes, we will,” I said. “She had never wandered before.” I must have sounded like an idiot, my bafflement still dumbfounding.

Geoff: No terrible harm done for when Anna came back the following day, I was told Lizzy had reverted to the patient they’d known of late. Jenny was still a little grumpy, for she felt that it all sounded like she’d made up the whole story with the cops. In no time at all, though, the agitation, the restlessness, the paranoia, and the visions had all but vanished, and Anna was leading her Mom gently from one activity to another.

We could never tell what it had been the day before that had incensed Lizzy’s demons to that degree. One thing for sure, though, Jenny never again relished being alone with Lizzy in those hours when the light of day was fading.