The Alzheimer's Symptom You Might Not Expect – Or Worse, Blame Yourself For
Alzheimer’s is a horrible disease that has uniquely devastating effects on the people who have it and their loved ones.
Common symptoms include memory loss; struggling to plan, complete tasks or solve problems; feeling confused; experiencing new problems with speaking and writing; misplacing items; making poor judgment calls; social withdrawal; and more.
While those symptoms are ones we often hear about, they aren’t the only ones. There’s a symptom that many caregivers aren’t aware of and think is a result of “bad” caregiving: agitation.
“It’s critical to first appreciate that agitation is a symptom of brain changes caused by Alzheimer’s disease, not poor caregiving,” said Dr. Richard Stefanacci, the medical director of Inspira LIFE, a senior living program.
“The brain damage from Alzheimer’s makes people prone to agitation regardless of how loving caregivers are,” said Stefanacci, who also specialises in older populations and Alzheimer’s.
According to information the Alliance of Aging Research sent to HuffPost, “agitation” in this sense can present itself in a variety of ways: pacing, trying to leave, angry outbursts, profanity, hitting, mood swings, throwing items and more.
Caregivers may blame themselves, AAR continued, thinking it’s a result of their burnout, introducing a new routine or not being patient enough.
Dr. Nikhil Palekar, the director of the Stony Brook Center of Excellence for Alzheimer’s Disease at Stony Brook Medicine, said there’s a stigma when it comes to this specific symptom.
“Caregivers often feel they might be doing something wrong, which is causing their loved one with Alzheimer’s to react in an uncooperative, hostile or agitated manner, without realizing that agitation in Alzheimer’s is very common, with rates ranging from 56% in early stages to 68% in the moderate-severe stage of the disease,” he said.
How Alzheimer’s can cause agitation symptoms
Like with other Alzheimer’s symptoms, it all comes down to the brain.
“Alzheimer’s disease is the result of brain damage to areas of the brain that control emotions, decision-making and behavioral responses,” Stefanacci said.
“This neurological damage explains why people with Alzheimer’s may react strongly to situations that wouldn’t have bothered them before the disease progressed to this point.”
More specifically, we’re looking at neurotransmitters. “Alzheimer’s disease results in dysregulation and a decrease in three neurotransmitters (chemical messengers) in the brain – serotonin, norepinephrine and dopamine – resulting in symptoms of agitation,” Palekar said. Keeping in mind that those neurotransmitters help with mood, motivation, energy, anxiety and more, this makes sense.
We also have to consider environmental factors. For example, the holiday season – or other high-commotion events – can exacerbate agitation and its causes.
“Large gatherings with unfamiliar faces, disrupted routines, unusual foods and changes to previously familiar environments can cause agitation in someone with Alzheimer’s, especially [in] later stages of the disease,” Stefanacci continued.
“Most critical is to make adjustments and accommodations to reduce the stress, such as maintaining routine and familiarity.”
There is hope for Alzheimer’s agitation
Whether you experience agitation from Alzheimer’s or love someone who does, know that hope is not lost. Below, doctors share tips and other helpful information that can help you manage this symptom together:
Create and maintain routines
Consistent daily schedules with meals, activities and bedtime are key, according to Stefanacci. When you do have to prepare your loved one for a change, he encourages doing it ahead of time if/when you can and trying to maintain other routines.
Avoid arguing when possible
If the person with Alzheimer’s has a harmless belief, Stefanacci recommended not arguing with them about it. Rather, he said to focus on the emotion behind what they’re saying and remember that you can’t reason with an Alzheimer’s-damaged brain.
Use calming approaches
While difficult at times, staying calm and helping the person with Alzheimer’s stay calm is important. Speak in a calm, reassuring voice, play familiar music they enjoy and reduce confusing noise, Stefanacci said.
Know that there are helpful treatments available
It’s easy to feel hopeless when someone has Alzheimer’s, and to think that small interventions won’t make a difference. That’s understandable – and thankfully not true.
“This symptom can be effectively treated with behavioural interventions as well as medication, which is FDA-approved for the treatment of agitation in Alzheimer’s disease,” Palekar said.
To get to that point, he recommended discussing any agitation-like symptoms with the patient’s medical provider.
Similar to the tips above, Palekar listed some specific, non-pharmacological interventions that can decrease agitation, too:
Maintaining a daily routine and structure
Reducing noise and clutter
Gentle touching
Soothing music
Reading
Walking (ideally outside in the sunlight)
Staying busy with distractions, like snacks, objects or fun activities
Avoiding stimulants, such as caffeine, late in the day.
Take care of yourself as a caregiver
Being a caregiver is hard work, to understate it. Stefanacci urges these individuals to seek support from other caregivers, support groups and counselling. He also mentioned giving yourself permission to simplify or skip holiday traditions that are simply too overwhelming.
In short, it’s “normal” for someone with Alzheimer’s to show agitation – and that’s on Alzheimer’s, not anything the caregiver has done.
As someone with Alzheimer’s or their loved one, know that you are not alone, and that people are available and want to support you.