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Family shares beautifully practical 'sundowning' strategies for loved ones with dementia

The late afternoon and evening hours can be especially challenging for people with dementia and their caregivers.

@iamgertrudejordan/Instagram (via Upworthy/Instagram)

Ty Lewis shares how she helps her mom, Gertrude, through sundowning time.

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.

Watch:

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.

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Well Being

Revolutionary 'Department of Future Aging' transformed a German town for its elders

Photo by Steven HWG on Unsplash

The world is getting older, and it's getting older quickly. In 2019, there were approximately 700 million people aged 65 and older. The UN predicts that the number will more than double by 2050. In the U.S., the Census Bureau estimates that retirement-age residents will outnumber children for the first time in the nation's history by the 2030s.

Clearly, helping the aging population live their later years with as much comfort and dignity as possible is a growing concern. And one German town is serving as an example of how to create a community where the elderly can thrive.

According to Reasons to be Cheerful, it all started in 1995 with a survey of 28,000 people aged 50+, exploring their wishes and expectations for their latter years. What the city of Arnsberg discovered was that aging residents wanted to participate in social life, actively contribute to society, continue learning, and—most importantly—not live alone.

Previously, Arnsberg had taken a "deficit-oriented" approach to its elderly population, focusing on what they couldn't do instead of what they had to offer.

Today, the city sees its aging residents totally differently, in large part thanks to its Department of Future Aging (DFA). That's right. In 2004, the town created an entire (albeit tiny) department dedicated to making sure elderly residents can live full, fulfilling lives as part of Arnsberg community.

"It is about strengthening resources and capacities, empowering, and enabling elderly people to stay or become active citizens," Martin Polenz, who leads the DFA, told Priti Salian.

Arnsberg is a city of approximately 74,000 residents, around 17,000 of whom are 65 and older.Wikimedia Commons

Polenz also told Channel News Asia that they don't want older residents living in the isolated fringes of the city. "We call it a city of good and long life, and we want to establish that for everybody," he said.

The DFA is tiny but mighty, leading more than 200 projects with a staff of two and a budget equivalent to approximately USD$24,000. They work closely with the Department of Citizens Involvement and the Department of Planning and Building to make sure the needs and desires of the elderly are woven into both the social fabric and physical design of the city.

Here are some examples of what that looks like:

- Numbered benches every 200 meters in some markets and on the promenade along the River Ruhr for rest and for people experiencing dementia. "If someone is lost, they can call for assistance quoting the bench number," Polenz told Salian.

- Volunteers who travel with older people as bus companions on shopping days, allowing seniors to shop for themselves but providing assistance with heavy bags and a sense of security

- Housing complexes that are both affordable and accessible, allowing seniors to live independently for longer

- The Dementia Learning Lab, introduced in 2008 by the DFA, which explores and implements solutions for meeting the needs of people with dementia and their families

- A quarterly magazine, SICHT, printed by the city and run by seniors for seniors

- A senior citizens' advisory council, which new residents are put in touch with

- Intergenerational initiatives, such as Café Zeitlos ("Timeless Cafe"), which aims to provide an inclusive place for people with dementia and their caregivers to hang out with people of all ages and create art together

And that's just a sampling. The DFA serves to advise, direct, train, develop, network, and collaborate to raise funds for programs, and they've been remarkably successful at it.

Channel News Asia did a video feature on how Germany, and Arnsberg in particular, cares for its aging population:

The German Town That's Embracing Dementia | How Germany Gets Ageing Rightwww.youtube.com

The town has earned recognition worldwide for its approach.

"In Germany, most local administrations provide only information and counseling services to help older persons and persons with dementia find points of support in their city," Anne-Sophie Parent, Secretary General of the European Covenant on Demographic Change and 28-year veteran of working on aging population issues, told Silian.

"Arnsberg's co-production approach is innovative because the city involves older persons and persons with dementia as key actors in the solutions that are developed for them. It makes them feel heard, a key element for them to feel valued and included in the life of their city."

Parent also called Arnsberg's work "exemplary and replicable in other European cities with similar demographic profile and population size."

Even if individual programs won't work everywhere, seeing people in their twilight years as active agents in their own lives and communities is an approach all municipalities can take as they prepare for a growing aging population.

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Early-onset Alzheimer's stole the memory of his marriage. Then he proposed again.

Earth and Sun Co/YouTube

Peter and Lisa Marshall's romance began 20 years ago, after the former neighbors had each gotten divorced. They lived in different states and maintained a long-distance relationship for eight years, as neither wanted to uproot her kids. After Lisa's youngest went off to college in 2009, the couple decided to get married.

A dream Turks and Caicos beach wedding followed. Lisa moved to Peter's home in Connecticut, where they enjoyed seven years of marital bliss. Then the warning signs hit.

Peter started giving Lisa directions to their home. He began having trouble finishing sentences, struggling for the words

"Instead of the word 'airplane,' he'd say, 'that thing that goes up in the sky,' " Lisa told The Washington Post. "He also became pretty forgetful, but the word deficiency was really hard to ignore."

Peter went to a neurologist in 2018 and was diagnosed with early-onset Alzheimer's. He was 52.

"Before his diagnosis, I always thought that Alzheimer's was an old person's disease," Lisa told the Post. "Now I know better."

Peter's cognitive impairment accelerated quickly. By January of 2019, he had to quit his job. The following year, Lisa quit hers to become his full-time caretaker.

Needless to say, it's been an incredibly difficult journey for Lisa, and well as the couple's five children, as Peter's memory of his life and loved ones fades—including his memory of being married to Lisa.

But late last year, a beautiful moment of hope broke through the darkness. Lisa and Peter were watching a show that featured a wedding when Peter suddenly looked over at Lisa and said, "Let's do it!"

"Do what?" Lisa asked.

Peter pointed to the wedding scene on the TV.

"Do you want to get married?" Lisa asked.

With a big smile, Peter said yes.

"Well, okay," Lisa responded. "We should get married then."

He wouldn't remember the proposal the next day, but the idea of renewing their wedding vows resonated with Lisa. "For better or for worse" had taken on a whole new meaning after Peter's diagnosis, and his condition has worsened since January of this year. For the past six months, he has seen Lisa as his favorite caretaker, not his wife.

Lisa's daughter, Sarah Brehant, runs a wedding planning business and offered to organize the ceremony. She networked with vendors, who all offered to provide their services for free.

"I knew that my stepdad, who I am very close with, was there through some of the toughest times of my life," Brehant told the Post. "He means so much to me, and my mom is my best friend, so I was proud to be able to take on such an important role."

Sarah wrote in a touching Father's Day post that Peter had started telling her he loved her every chance he got after his diagnosis.

"I knew he wanted to make sure I knew before he couldn't tell me anymore," she wrote. "He'd say it every chance he could get while he still could, every time we saw each other."

Peter and Lisa renewed their wedding vows on April 26 in a ceremony attended by friends and family and officiated by a dementia specialist who helped Lisa set up a care plan for Peter.

"It was just magical — straight out of a fairy tale," Lisa said.

When Lisa got to the altar, Peter leaned in and gave her a kiss.

"There wasn't a dry eye, and I was over the moon," she said. "I hadn't seen Peter that happy in a long time."

"It was absolutely magical," Sarah told The Knot, "and Peter was bright and present the entire day. The sweetest moment of the day was when he had a very lucid moment and he leaned in and whispered in my ear, 'Thank you for staying.'"

Watch this beautiful video of highlights from the big day:

Emotional Vow Renewal // Mill 1 at Open Square // Lisa + Peterwww.youtube.com

As lovely as the vow renewal was, it would be disingenuous to leave the story there. Lisa has been documenting the couple's Alzheimer's journey—the inspiring and the challenging—via her Facebook page Oh Hello Alzheimer's. In her posts, it's clear what an up and down experience it is to love someone who is losing themselves.

On June 14, Lisa shared a bittersweet post about the difficulty of watching Peter disappear, only to be reassured by him when she cried into his chest, "We still have time."

Then, just five days later, Lisa shared a post about how Peter's condition has reached a point where the daycare that gave Lisa a respite from full-time care was no longer viable as he's grown more anxious and agitated. Alzheimer's patients can become increasingly paranoid and hallucinate as the disease progresses, which can lead to anger and aggressive behavior.

"I knew the call would come," Lisa wrote, "I was well aware that it would happen. I just thought I'd have more time."

The decisions about care for a loved one with advancing Alzheimer's are never easy, and time is never guaranteed. Although Lisa and Peter's story is hard to witness, her openness is also providing solidarity and support for countless families who are going through similar experiences with their loved ones.

Lisa has also used her Facebook page to raise money for Alzheimer's research, and after seeing Peter's story, it's obvious why it's so needed. As Lisa reminds us, Alzheimer's is a terminal disease, and as of now, there is no cure. You can donate to the Alzheimer's Association via Lisa's team link here.

As for advice for other couples, "The only thing that matters is love and respect," Lisa told The Knot. "You treat each other with gentle kindness every day and you reach deep into your heart for more patience and understanding than you think you have. You love deeply and immensely and you make memories intentionally. Be present."

Despite Peter forgetting her, Lisa added, "I'm the luckiest woman in the world. The man of my dreams fell in love with me and asked me to marry him twice. He chose me again."

All our best to Lisa and Peter as they navigate their remaining time together.

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Family

She raised her son and daughter right. Now, they're taking care of her.

True
Ad Council + AARP

At age 92, Lulu Lancaster has lost most of her short-term memory.

Her children, Patty and Justin, have become her caregivers, and as Patty says, "We've had to kind of become her memory."

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GIF via Ad Council/YouTube.

Caregiving for adults with Alzheimer's and other dementias is increasingly something that adults who have aging parents are faced with.

Some of the numbers, from the Alzheimer's Association:

  • 5.3 million Americans of all ages have Alzheimer's disease in 2015, most of them are 65 or older.
  • Almost 2/3 of Americans with Alzheimer's are women.
  • In 2014, friends and family of people with Alzheimer's and other dementias provided an estimated 17.9 billion hours of unpaid care, which is estimated to be worth $217.7 billion. That's almost eight times the total revenue of McDonald's in 2013.
  • About 40% of Alzheimer's and dementia caregivers suffer from depression

As a caregiver or concerned family member, what should you look for if you suspect Alzheimer's or other dementia?

Alzheimer's actually starts in the brain before there are any signs, so detecting it usually happens in the early or moderate stages. You can find some additional screening questions by visiting the Alzheimer's Association and AARP.

Here is some useful information on the various stages:

Early-stage

  • Not being able to come up with some words or names
  • Increasingly losing objects that are needed to function: keys, wallet, etc.
  • Trouble planning or organizing things, trouble thinking ahead
  • Forgetting the month or year

Moderate

Typically the longest stage, it can last years. Some of the signs are:

  • Confusing words, getting frustrated or angry, and refusing to perform routine tasks, such as bathing.
  • Withdrawing from social situations because they're overwhelming
  • Being unable to decide where they are or what day it is
  • Increased risk of wandering off or getting lost
  • Personality changes, like becoming suspicious, having delusions, becoming compulsive
  • Inability to recall their phone number or address

Late-stage (Severe)

  • Inability to react or respond to their environment
  • Losing the capability to carry on a conversation
  • Eventually, an inability to control even muscular movements, such as those required to walk, sit, swallow, etc.
  • At this stage, susceptibility to infection increases dramatically

People with late-stage Alzheimer's can even get confused about what time of day it is, sleeping during the day and being awake at night.

This is the stage that requires full-time care, 24/7, and that's why Patty and Justin became Lulu's caregivers.

However, this stage is also when family members can no longer be the primary caregivers, especially if they have their own familial demands or a job that doesn't allow time off.

It's also the time when caregiver burnout is a high risk; the emotional and physical toll can be too much.

Frequently, this is the time when the loved one must be moved to full-time care, such as a nursing home or a facility for memory care or alzheimer's.

For someone like Lulu, having her son and daughter around to help navigate this time in her life is priceless.

The bond that she shares with her children is becoming ever more solid as they go through it with her. Listen to their story:

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