A noise in the night awakens me. What was that? Should I get up and go look? Do I wait and hope the noise goes away? This noise has haunted me almost every night recently. And every time I hear it, the noise scares me.

Noises in the night are a constant when you are a care provider for an individual with Alzheimer’s disease. Alzheimer’s disease disrupts sleep habits and time perception. People with Alzheimer’s disease wake and move more frequently at night. Eventually, as the disease progresses, the person may be as active at night as she is during the day. Since we are care providers for relative with Alzheimer’s disease, nighttime noises are frequent in our house. Our relative with Alzheimer’s disease creates the noises disrupting our house at night. Every night she is awake and moving around.

These nighttime noises are truly scary. Where is she and what is she doing? Is she safe? Some people with Alzheimer’s disease become wanderers – they can leave the house at any time of the day, wander the neighborhood, and get lost. They get lost because they forget where they have gone, where they belong, and how to get back home. Care providers then have to find their relative, sometimes with the help of the police. I have nightmares about our relative lost on the streets of our city.

But our relative doesn’t wander. She is too weak to go roaming around the city streets. Instead, since our relative is very weak, she is constantly in danger of falling. She has had several serious falls, which is part of the reason she lives with us now. In addition, she sometimes experiences difficulties getting up from chairs. To make the situations more frightening, she has experienced at least 3 seizures in the time that she has lived with us. (I’ve written about her grand mal seizures in two other blog posts: Seizures and Psychosis in Alzheimer’s Disease, A glimpse of the real person and The Power of Narrative in Alzheimer’s Disease and Dementia.) When we hear her in the night, my wife and I listen carefully. Is she simply going to the bathroom, has she moved to the kitchen, does she think it’s morning?

Frequently when she wakes in the night, she think it’s morning. Actually, now almost every time she wakes up, she thinks it’s morning and the start of a new day. Whenever she gets up day or night, she may come to the kitchen, sit at the counter, and see if breakfast is being served. She really doesn’t know what time it is, even with clocks everywhere in our house.

She is unaware of time because Alzheimer’s disease disrupts time perception. One part of the brain impacted by Alzheimer’s disease is the suprachiasmatic nucleus (SCN) in the anterior hypothalamus, which plays a role in maintaining circadian rhythms. People with Alzheimer’s disease are less impacted by bright light and thus less able to maintain the traditional day and night, wake and sleep cycle.

Based on the decreased functioning in the part of the brain that sets the circadian rhythm (the SCN), I had wondered if using very bright lights at a regular time of the day would compensate. Perhaps if we over-exposed our relative to light, we could re-tune her sleep cycle. A reasonable idea, but unlikely to help. We’ve had such a light at her puzzle table (she enjoys putting together puzzles with 300 or fewer pieces). The light at the puzzle table has never seemed to help with her sleep cycle. In addition, in a review of sleep disturbances in Alzheimer’s disease, Yesavage and colleagues (2003) reported that when such lights have been tried experimentally with Alzheimer’s disease individuals, there has been no impact on sleep cycles. Apparently, the decreased brain function cannot be compensated by extra light.

So the noises continue in the night. She can’t discern if it is day or night. The normal signals you and I use, such as light, darkness, and clocks? She appears unable to interpret these signals. We created a sign that we put at her usual place in the kitchen saying: “It is night, go back to bed.” She can read, but the sign has little effect.

For caregivers, this is one of the exhausting aspects of Alzheimer’s disease. Caregivers are constantly living with sleep deprivation. We hear a noise in the night and wonder – is she safe, should I get up, will she go back to bed on her own? I am anxious every time I hear her. Every noise in the night is scary to a care provider. And every night the noises awaken me.

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