The late afternoon and evening hours can be especially challenging for people with dementia and their caregivers.
Anyone who has had a loved one with dementia knows how challenging it can be to care for a loved one whose memory is deteriorating. As they lose grip with their own reality, relationships take on new dimensions, emotions can become complicated, and love and grief walk hand in hand more often.
The good news is that no one is alone in these experiences. Nearly 6 million Americans have Alzheimer’s disease or related dementias, and according to the Alzheimer's Association, 83% of the help provided to these patients comes from family members, friends or other unpaid caregivers. Thankfully, some of those folks are utilizing social media to raise awareness and provide support and education about caring for people with dementia.
People like Ty Lewis.
Lewis‘ mother, Gertrude Jordan, was diagnosed with Alzheimer's disease in 2014, just a year after her own mother passed with dementia. Lewis has spent the years since learning and sharing all she can about caring for people with dementia, becoming an advocate and source of support for caregivers. She is now a Certified Alzheimer's Disease and Dementia Care Trainer and Certified Dementia Practitioner.
In a post on Instagram, Lewis shared some practical tips for managing “sundowning,” a term for the late afternoon and evening hours when many people with dementia have the hardest time.
In the video, Lewis' daughter Giavanni sings a song of praise that is clearly familiar while Lewis calmly and patiently talks to her mother. She doesn’t force it, but Lewis gently draws Gertrude closer to her as she starts to get upset, and we can see her calming down on the second time through the singing. "Music is a strategy," the text overlay reads.
As Lewis herself says, dementia shows up differently in every single person, but these tips might help caregivers who are feeling at a loss for what else to try.
Lewis shared in the caption:
“Sundowning in Dementia typically occurs in the late afternoon and evening. During this time, your LO [loved one] will experience increased confusion, agitation, mood swings, anxiety, and behaviors will increase.
Sundowning is HARD! Here are a few strategies. As always, these strategies may or may not work with your LO. Try different ones to see what works best for you through observation + data collection.
1. Create a daily consistent routine.
2. Minimize environmental triggers (bright lights, strong smells, textures, etc)
3. Stay calm
4. Use music to soothe your LO
5. Create a relaxing environment
6. Avoid OVERstimulation
7. Contact your physician to discuss alternatives like medicine if you cannot control the behaviors.
For more information, visit incaseiforgetconsulting.com.”
The video brought people to tears as they recalled their own difficult moments with their loved ones.
"This was brutally hard with my mom. You all handled that so beautifully. Thank you for sharing. ❤️" — sarahdodge9
"I take care of a woman with dementia. It’s all about heart and the present moment. ❤️ " — abanomics
"Glad this is being discussed now so people can learn about it, although I wish it was when my great aunt was still alive. Gosh was it hard. I lived with her for a time to help with care, and nighttime was simultaneously heartbreaking and scary. She’d spend most of the night repeating the same path through the rooms, opening and closing doors, agitated and afraid, looking for her late husband, wondering why I was there (& by 'I' I mean my mother which is who she thought I was). Alzheimer’s is a thief that often steals our loved ones before death." — mamalifemagic
People who have worked with dementia patients offered praise and appreciation for the post as well:
"I work in an acute care hospital and unfortunately see dementia patients at their worst. Unfamiliar environment, minimal family interaction, acutely ill, and so on. Sundowning at the hospital can be extra stressful. This is so lovely to see the care and patience in the home. 💜 And of course the music.💜" — lesismore77
"I formerly worked in recreational therapy in skilled nursing homes and was hired specifically for this purpose (distract from sun downing behavior). Music is such a powerful therapeutic tool and a beautiful way to connect with a loved one with dementia. Wonderful video! 👏❤️" – amynjoedecker"Thank you for this! I have been a nurse for 24 years and have never seen this kind of love with a pt in an active episode of sundowners. It's tortuous for a loved one to care for someone in this condition because they can no longer regulate their emotions. Our culture here in America has to change to beautiful examples just like this. Loving touch, calm touch, calm tone of voice, beautiful heartfelt song bird of a voice...all my love to all 3 of you. ❤️❤️❤️❤️" — corinnawallen
Lewis shares lots of helpful information for caregivers on her website, www.incaseiforgetconsulting.com, and you can follow her on Instagram here. (And if you want to hear more of that angelic voice of Giavanni's, you can follow her on Instagram as well.