From its earliest onset, dementia induces stress. Memory impairment, language problems, emotional dysregulation… most people are aware of these changes in the early stages of neurodegeneration. This awareness is upsetting, and it can trigger a cascade of hormonal changes that put the brain and body on high alert. Without effective coping strategies, these hormonal levels will remain high, to the detriment of physical health and wellbeing. And without intact thinking processes, implementing stress management techniques is nearly impossible for the person with dementia. Indeed, throughout the course of progressive dementia, chronic stress can be a constant companion.
Imagine the frustration you feel when you can’t find your keys. You look. You dig. You shake. You repeat. Nothing. It dawns on you that the keys are officially missing. Your hypothalamus is watching carefully from the control tower, and eventually sounds an alarm. This triggers a release of hormones that sends more signals downstream. Your adrenal glands give the hypothalamus a thumbs up and respond by shouting, “Ok listen up! We have a situation over here. We need to increase this guy’s heart rate, dilate his pupils, and rev up his breathing. Let’s tense up his muscles and increase his stomach acid. Hey liver, we need more blood glucose over here. Let’s help this guy find his keys!” Cortisol rushes into the bloodstream and “fight or flight” kicks in. All systems are locked and loaded.
The body is prepared for action, but it is meant to be short-lived. As soon as you find your keys, all systems should return to normal.
But what if you never find your keys?
Having dementia can sometimes mean that, literally and metaphorically, you will never find your keys. Fractured thought processes can lead to a constant sense that something is lost, or dangerous, or urgent. Neurotransmitter dysregulation and sensory processing malfunction can cause cortisol levels to remain high, and that sense of urgency can remain constant.
Hank is our friend living with dementia. He knows something is wrong. His mind churns and his thoughts whirl, seeking to grasp hold of the problem that is feeding that feeling. But if language and memory centers have been damaged, he can’t quite remember what he is looking for or why it is so important. On some deeper level though, he knows that as soon as the problem is identified, he can get on with “finding the keys”, and this panicky feeling will dissipate.
In the meantime, he searches for something and stumbles through his thoughts. Relaxing is not an option.
Sometimes threat levels rise. When the “lost keys” cannot be found and a rationale conclusion cannot be reached, it must be because of something much more menacing: someone must have taken his keys (or his wallet, or his money, or wife). The mismatch between the alarms clanging in his head and a battle-ready body, and the indifference of the environment to the gravity of the situation can only indicate a darker truth… if only he could put his finger on it.
Meanwhile, observers see this as anxiety. We notice an increase in agitation, disjointed thinking, hand-wringing, pacing, elopement, combativeness.. behaviors we want to correct. We struggle to communicate our reality, correct errant thoughts, and calm a system that is primed for action. Verbal communication is ineffective. Your own composure tells him that you just don’t get it. His internal safety mechanism knows better.
Sometimes medications work. But sometimes the side-effects cause other issues. Sometimes self-medication works. But sometimes it leads to substance abuse and collateral damage.
On our best days as caregivers, we offer ourselves. We counter the chaos with calm. We soothe. We correct. We try to talk them off the ledge.
But neurodegenerative processes do not care about our best intentions. Degeneration has affected the areas that can no longer respond to our higher level approaches. Reason and insight won’t work. We need a back door…
… because the repercussions of long term, chronic stress are significant. Prolonged increased levels of cortisol cause cellular damage, leading to a weakened immune system, increased risk of heart attack and stroke, increased risk of diabetes, headaches, insomnia, and depression. Stress, especially the kind caused by an unrelenting sympathetic nervous system, is no joke.
So where is the back door? Being that the brain and body are already primed for action, can we find a positive use of all that pent up energy? If we can’t “reason” through it, or safely “medicate” it away, what are our options? How do we resolve a crisis when the crisis cannot be named? How can we naturally lower the stress response in the absence of declarative brain power?
Maybe we should fight fire with fire. Perhaps there is a way to beat dysfunctional neural connections at their own game. Maybe there is a way to launch a counterattack of hormones and neurotransmitters aimed at disabling sympathetic overdrive.
Our guy searching for his keys could really use a shot of dopamine with a serotonin chaser. We could try medication, or we could help him experience something much more natural and neurologically satisfying… let’s actually solve a problem.
If the problem cannot be named or resolved, try the unconventional, counter-intuitive thing: create a problem. Lose something. Spill something. Create a solvable problem to replace the unsolvable one.
It goes something like this, “Hank, help me! I can’t find my ring. Will you help me find it?” Suddenly Hank isn’t the only one with a problem. It’s true that misery loves company. You are distraught. So is Hank. He is not the only one stuck in an anxiety loop. And you have given the problem a name. Helping you with your problem is a great distraction, and a productive use of his fired up adrenal glands. Trusting Hank with your problem also gives him a shot of oxytocin, uniting you both in a mutual cause.
Make him work for it. Get sweaty. Search high and low. Move stuff. Reach. Use those readied muscles for good. Make it a taxing effort. Remind him frequently what you’re looking for, and you are so grateful for his help.
Once you find “the ring” (the money, the wallet, the valuable thing), make it count. High-five, hug, and celebrate in some big, meaningful way. A little chocolate doesn’t hurt either. After all, this is the resolution Hank has been waiting for. Emphasize the conclusion. Thank him. Hug him with firm pressure (oxytocin release). Coax his mind into a state of resolution. The lost ring is now found. Whew, what a relief. Let your enthusiasm unleash a flood of endorphins: a soothing neurotransmitter cocktail of dopamine, serotonin, and oxytocin. Make sure, at least briefly, that he recognizes closure.
Gradually try to transition to a low stim setting after this victory. Add in sensory components that promote feelings of comfort- weighted blanket, soft music, pleasant entertainment, aromatherapy… something resembling relaxation. It may not be as simple as that, but lowering the alarm from a DEFCON 1 to a 4 for as long as possible will yield some beneficial effects.
Some of these techniques are validating, others are simply about creating a solvable problem. The new problem can be much simpler than searching for a lost item. It can be in taking something apart (The Art of Deconstruction), spilling a box of spaghetti on the table (oops), or rescuing a distressed animal (Animal Planet). The trick is to engage the natural brain processes for problem resolution and see it through, especially in a heightened state. Victory may be brief, and the process may need to be repeated. But any time spent in a lowered stressful state is just good for human health.