Written by Amanda Thornton MSN, BSN, RN, CIC, VA-BC
One day, as I grabbed my running shoes and a bottle of water to go outside my Mom suddenly asked “what are you doing? Are you going somewhere!?” in obvious alarm. “Well yes Mom, I am going out for a run.” “What!!? Are you crazy!! Why would you do that! You should NOT go outside!” she practically shrieked at me. In confusion I ask “Why Mom? What are you worried about?”. “Well you can’t possibly go, because….(she paused looking around and thinking quickly) the WIND IS BLOWING!!”. “Ummmmmm…….” I responded amused, “It is 73 degrees and sunny outside, I think I’ll be ok. “NO! No you CAN’T GO! The WIND is blowing! Don’t you see?!” she frantically gestures outside at the gentle breeze ruffling the leaves.
These interactions are common with our mother. Before she got Dementia, she wouldn’t bat an eyelash at some of the most anxiety producing things that would make others jump, including spiders, snakes, and yes, even breezy winds. So in general Mom is still really overall pretty chill, but she definitely goes through “periods of agitation and anxiety”. We sisters have asked ourselves “why does this happen?” and “what can we do to help decrease her anxiety?” As her dementia progresses, we have noticed that these behaviors have become increasingly common with her. She has been completely obsessed with the pandemic and insists we will all most certainly die if we step one toe outside the house. She becomes anxious, wringing her hands and pacing while desperately trying to convince us to not leave. We patiently explain to her why it is ok, but usually to no avail. Now we just don’t tell her when we are leaving, we try to just sneak out past her.
We sisters decided we would sit down and talk through what we could do to decrease the overall anxiety that Mom was experiencing, and we brainstormed some of the reasons why it could be happening. We did not want the interventions to be pharmacological (medications)- because we believe in as natural of an approach as possible without sedation or restraints of any kind- physical or medicinal. We want her to be as independent as possible with as high of a quality of life as possible. That being said, these medications can be helpful in some circumstances, and we recommend talking with your physician about what might be appropriate for your loved one. After a few brainstorming sessions we came up with a few gems I want to share.
My Mom absolutely LOVES to drink tea and coffee, it is a “go to” for her and she loves holding the warm cup in her hand and sipping slowly. We knew this was a comfort to her, and we of course did not want to take that away from her, but one thing we did notice is that after about four mugs or so she would begin escalating her agitation. Then we had a “no duh” lightbulb moment……simply remove the caffeinated drinks and replace with decaf. Now my mom is savvy enough to know when her earl grey box says “decaffeinated” in big letters on it, and she always chooses the caffeinated box. Simple solution really, just take out the caffeinated teabags from the box and replace with decaf into the SAME box. It worked perfectly. Same with the coffee, keep the bag that looks like caffeinated and replace with decaf. It took us no time at all to do this, and it made such a huge difference! Now she can drink as many cups as she likes, it keeps her happy and hydrated, and no agitation from the caffeine!
The next most important thing we did for Mom was to establish a routine which she participated in developing and she agreed upon in advance to follow. Namely, a personalized “Care plan” for her daily living. Now, instead of anxiety and agitation with refusals or other behaviors, we don’t fight at all! She does what we want her to do when we want her to do it….why? Because we established and follow a careplan for her. For more information on how to do this, go to the blog post on “How to write a careplan”. This is a gamechanger!
These were our top two interventions we came up with that made such a difference for our family. However, there are many more I am aware of you can also try. For example, ensure good sleep patterns by exposing them to sunlight in the morning for about 2 hours. You can sit them next to a window if it is cold outside, but direct sunlight is always best. Studies have shown that dementia patients can have disrupted sleep because they are not being exposed to daytime light sources which guide the natural rhythm of the bodies circadian sleep cycles. This is partly because dementia patients have been shown to have a reduced physical ability for light to reach the back of the eye due to physiological changes in the aging structures of the eye (1).
Some other easy low hanging fruit to consider is some things I have learned in my nursing career working directly with dementia patients.
They include:
1. Ensuring the person has hearing aids, dentures, and glasses in for optimized communication.
2. Ensuring that medications are given at the same time each day.
3. Reducing stimulus as much as possible to a nice “calm and serene” atmosphere (do not have three TV’s on and the radio playing for example).
4. Always approach the person from the front, never “scare” them by surprising them from behind
5. Use slow easy to hear words using a lower tone of voice while looking directly into their eyes, repeat as necessary but allow them time to process (see our blog post on “Why people with dementia have slow processing speeds”).
6. Use gentle touches, do not be fast or rough when physically helping them and take your time when physical touching is necessary.
7. Have the main “large” meal at the middle of the day. Trying to digest a large meal at night may make it much more difficult for them to go to sleep, and they remain agitated if experiencing heartburn when laying in bed.
8. Have a toileting schedule. Many demented patients do not always know or communicate when they need to use the facilities, a toileting schedule takes the guess work out, and prevents agitation from a full bladder or a need to poo. I absolutely love toileting schedules as a nurse, I would never even consider taking care of a dementia patient without one! Luckily at the moment, my Mom does not need one.
9. Exercise exercise exercise!!! This is a fantastic way to decrease agitation and anxiety, and increase endorphins!
10. Decrease nighttime interruptions, use low “warm light (not blue light) night-lights for safety to the bathroom at night. Ensure the room is dark, the temperature and bedding is comfortable, and bedtime is at the same time every night.
11. If they are non verbal, consider other ways of communicating such as a communication board.
12. Put up a large white board in the house that includes the careplan for the day along with other important information, such as when their next doctors appointment is, etc. so they do not constantly have to ask you. Hospitals use patient communication whiteboards for everyone- it really helps the patient feel more in control to have information at hand right in front of them.
13. Do not be afraid to secure and “lock up” medications- including over the counter ones, so they do not accidentally take too much or the wrong kind. Medications are always locked up in healthcare, this is perfectly acceptable in the home as well.
References:
1. “Light, sleep and circadian rhythms in older adults with Alzheimer’s disease and related dementia’s”, by Mariana G. Figuerio. Neurodegenerative Disease Management, 2017 Apr; 7(2): 119–145, Published online 2017 May 24.
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