Dementia Special: Delirium, Alzheimer's, Dementia Care, and Supporting CaregiversPage 42 of 51

16. Expect the Unexpected

guideline 15

Expect the unexpected.

Society is always taken by surprise at any new example of common sense.

Ralph Waldo Emerson
Transcendental Philosopher and Writer

Certain stressors can trigger agitated or catastrophic behaviors in people with dementia. Caregivers must be aware that this is a possibility, understand why it happens, and be prepared. Using a common sense approach helps us to understand that stressors include:

  • Fatigue
  • Change of environment, routine, or caregiver
  • Depression
  • Misinterpretation of stimuli in the immediate environment
  • Illness
  • High expectations from caregivers
  • Delirium
  • Hallucinations

Think about the things that make you stressed out. People with dementia are like you and me in many ways. They will be affected by many of your stressors.

Stressors can lead to negative behaviors such as screaming, rummaging, wandering and pacing, and disinhibition. Planning for these behaviors and learning how to manage them can reduce catastrophic reactions from the individual and nearby residents. Still, there are times when dementia caregivers are taken by surprise.

Impulsive behavior is often seen in individuals with dementia. Other visitors and residents may find the person’s social and personal conduct embarrassing or frustrating. These behaviors are often associated with a lack of inhibition, resulting in impulsive or inappropriate behavior.

Callie

Callie was a resident in an assisted living facility that had a memory care unit. She often preferred to sit quietly by herself in the living room. She rarely interacted with other residents and preferred simply to watch visitors and family come and go. Callie rarely smiled and rarely spoke. However, on occasion she would have a very negative reaction to large crowds or noisy environments and staff always tried to remove her from these stressors.

One weekend, on a very warm day in August, a family member had arranged for a birthday party in the living room. All the residents were invited but the weekend staff forgot to take Callie to a quiet area. With everyone’s attention on the celebration, no one noticed that Callie had begun removing her clothing. A staff member turned just in time to see her take off her slacks.

What is the first thing you would do to help Callie and avoid a catastrophic reaction?

When something unexpected happens, the safety and dignity of the resident must come first. Rather than immediately trying to get Callie dressed, which might have caused a negative reaction, the staff simply asked everyone to leave the room for a few minutes. Jennifer, a nursing assistant sat next to her and asked if she could help Callie get dressed. The response was a definite no, and she pulled off the remainder of her clothing.

Another staff member had brought a sheet to cover Callie, but stood by the door to maintain privacy and see if her help was needed. After a few minutes Jennifer again asked Callie if she could help. Callie’s response this time was that she was cold. Promising her some birthday cake if she would get dressed, the aide was able to help her do so; after Callie had gone, the party goers were brought back into the room.

Callie could not explain why she took off her clothes but it was clear that she felt no embarrassment when she did it. Disinhibition, the loss of awareness of what is appropriate behavior, affects many individuals with dementia. If the staff had gotten upset and embarrassed for her, Callie may well have acted negatively. Temporarily removing the others from the room gave Callie a few moments to experience physical discomfort without her clothes and brought her to a point where she accepted assistance and a “reward” for getting dressed again.

While most people on memory care units have a diagnosis of Alzheimer’s disease, patients with mixed dementias, frontotemperal dementia (FTD), and others may have a higher incidence of hallucinations, delusions, and paranoia. Additionally, those who have behavioral-variant FTD may experience delusions that bring on extreme jealousy, or their reactions may be religious or bizarre in nature.

The response of the staff may determine whether these problems become catastrophic or are quickly defused. Remaining calm, keeping other residents and staff safe, removing distractions, and preventing the person from hurting herself should be the goal. It’s just common sense.