I remember the distressing phone conversations with my mother, every day, at the same time, around 5 or 6 in the evening. Her stories would vary, but the terror remained constant. There were anonymous callers, knocks on her window, suspicious burnt marks on her dresser, important papers missing, . . . . Her much loved home had become unsafe. And she found comfort in visions of her long dead father coming back to reassure her.

That’s when I first encountered ‘sundowning’.

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From the Alzheimer’s Association:

Studies indicate that as many as 20 percent of people with Alzheimer’s may experience increased confusion, anxiety, agitation, pacing and disorientation beginning at dusk and continuing throughout the night. These late-day increases in behavioral problems are often called sundowning. Sundowning can disrupt the body’s sleep-wake cycle, causing more behavioral problems.

Factors that may cause sundowning include:
• Mental and physical exhaustion from a full day trying to keep up with an unfamiliar or confusing environment.
• Caregivers, who are exhausted by the events of the day, may give off nonverbal cues of frustration, which could lead to negative reactions in the person with Alzheimer’s.
• Reduced lighting and increased shadows may cause persons with Alzheimer’s to misinterpret what they see — subsequently, becoming more agitated.

This interpretation is consistent with my own experience. Ever since my mother moved from a home environment no longer suited to her needs, to a safe assisted living place, all her afternoon terrors and ‘hallucinations’ have disappeared. It has been four years now.

Judy Berry attributes the absence of sundowning at Lakeview Ranch, to making the effort to learn each individual’s lifestyle, developing a trusting relationship, respecting and validating their feelings and meeting their needs. Several years ago, another community, the Beatitudes Campus in Phoenix determined they had a serious problem with sundowning and set about finding some solutions:

As Tena Alonzo, Director of Research and Dementia Programs at Beatitudes, describes it, “In the dementia unit, everyday at the evening shift change, the chorus would start: a few people would call out and then everyone in the vicinity would join in. You could hear ‘help me, help me’ and ‘oh, shut up’ continuously. Perhaps it wouldn’t have been so bad if that’s where the challenging behavior stopped, but this was just the beginning of the evening! People who were easy to get along with the rest of day would suddenly want to fight with anyone who crossed their path. Others would pace the floor looking for an exit to escape. Dinner was disastrous as no one could hear themselves think. Visiting families and friends were distressed and upset. After several hours dealing with agitated residents and family visitors who were sometimes inconsolable, the exhausted staff would finally get everyone in bed so the whole process could begin again the next day.” As the staff looked at the frequency and severity of residents experiencing sundowning,
they thought there must be something that can be done about this situation. […] They had recently begun implementing a philosophy where achieving comfort was the overall staff goal. This comfort philosophy was not about an end-of-life hospice focus, but rather about meeting the needs of people with dementia the way they would do for themselves if they were able. This was a big change as it meant stepping away from the schedules and routines that had been established to embrace the routine of the person with dementia.

To begin, the team decided to observe everyone residing on the dementia unit between the hours of 2:30 PM and 9:00 PM. This observation, which occurred over several days, shed light on some interesting scenarios. The staff saw that many residents looked tired and frazzled and wondered if they would be more comfortable if they were to lie down and rest. Much of the time these rest periods were not necessarily convenient for the staff, and it was a little challenging at first to envision the perspective of the resident for some staff members. The team decided if someone looked tired, no matter when that occurred, they would assist him or her to rest either in a comfortable chair or on the bed (some prefer a chair or the couch, some may only lay on top of their bed, with a throw, while others prefer to change and get back into bed, the decision is based on the resident’s comfort). After some discussion, the staff also agreed that it didn’t matter if the rest period was during a meal or an activity. After a few months, everyone accepted the “rest when tired philosophy.” As residents started to sleep when they were tired and wake when they were rested, the change was obvious. They were happier and didn’t seem to need so much psychotropic medication. The nurses didn’t give PRN medication for agitation any longer and felt comfortable asking the physicians to begin tapering the medications. They started with the anti-anxiety medications because almost every resident was receiving one, and then worked on tapering the anti-psychotics. While not every resident was comfortable without psychotropic medication, most were.

This first phase of addressing the issues with sundowning had been very successful, but staff felt there was more work to do. Next, they observed the overall unit environment. What was seen and heard was appalling. At the evening shift change, the commotion increased significantly. Staff were used to speaking all at once and rushing around trying to complete tasks before end of shift or gearing up to begin their work. This cacophony and disruption were compounded by a television in the common area and general noise on the unit. Watching the residents respond to the din was enlightening. Sometimes people covered their ears or tried to get away from it. Some just looked scared and bewildered. It became clear to the staff that they needed to stop talking so loudly and slow down. The television that had been so prominently displayed in the common area, but never really used by residents, was moved. The milieu became quiet, and everyone responded positively to the change in the environment. It can be easy to forget that being confused and unable to make sense out of the environment can be extremely tiring for the person with Alzheimer’s, and overstimulation only makes this worse. The staff was amazed that making comfort the goal of everything had such a positive impact on the residents and on themselves. Once the changes were in place, no one called out, became angry or upset or tried to leave the unit. Staff members became sane again, and many reported they enjoyed their jobs more since the changes were implemented. Families and friends increased their visits in the afternoon and evening. Dining became a wonderful event which resembled a restaurant setting rather than a nursing home dining room. As Ms. Alonzo relates, “It’s been almost 14 years since we’ve experienced the pain of sundowning here. We still do the same things, still make comfort the goal of everything, and both the residents and the staff are better for it.”

According to Jane Verity, from Dementia Care Australia:

Sundowning is not a symptom of dementia. To me it is a symptom of an environment that does not feel like home. Our job is to make the place where people with dementia live – one of genuine kindness, love and compassion, where each and everyone has opportunity and is encouraged to contribute, feel needed and useful, have opportunity to care, self esteem boosted and the power to choose (which is different from having the ability to choose). Interestingly, sundowning from the above perspective can happen to anyone of us at any age when we are displaced under extreme distressing circumstances. A personal friend in her forties found herself sundowning – having to go walking without purpose around 4pm everyday. This was after she had lost her home, animals and all belongings in the fires a few years ago. Her children were saved but now living with her parents and she was living with a friend sleeping on a couch away from her children and with no personal belongings around her. She has often told me that if it was not for the knowledge she had about dementia and their longing to go home at the end of the day she would have thought that she had gone crazy. But instead, she now felt a deep affinity and understanding of what it could be like to be displaced in a home without your familiar faces and belongings and why people with dementia in such circumstances might have a need to leave and go walking looking for ‘home’.

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As I found out with my mother, ‘home’ does not necessarily mean living in one’s own home. It means living in a place that feels safe and nurturing. Dr. Allen Power explains how a person’s home can become just as alienating as an institution:

The institution is more than a building. It is a rigid environment that
disempowers individuals through hierarchical authority and priorities that are 
not always in the individual’s best interest. When a person at home has lost all
 input into daily decisions, becomes isolated or objectified, and/or when her 
care suffers because the “caregiver” is burned out from lack of resources and 
support (which often leads to isolation and overmedication), then she can easily 
become institutionalized in her own home.

If your loved one starts to ‘sundown’, whether at home, or in assisted living, take it as a clue that not all is well, and that changes need to be made in his or her living environment and care situation.

This article was filed under experiential model.

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