Living Well With Dementia

Wanda Edwards always prided herself on her attention to detail. As a clerk for a bankruptcy judge in Mississippi for 23 years, she was responsible for scheduling appointments,trials and hearings. Then, in 2009, she started forgetting things. At first, it was just the time of an important meeting here or there, but as her memory grew fuzzy, she found herself checking and rechecking appointments and second-guessing herself.

However, she was determined to find ways to compensate for the slow cognitive decline she was experiencing. "My mom didn't want people to know that she was struggling," explains Kerri Foster, Wanda's daughter. "She continued on with life as normal, but she would make up for it by being very quiet in group settings, even with family. She became more of an observer."

Wanda continued to work full time until retiring in 2011. For the next several years, she and her husband, Bill, lived a full life, attending church every Sunday, volunteering regularly at a local food pantry and joining friends for a monthly dinner at a nearby restaurant. And, of course, she always made time for trips to visit her children and granddaughters in Huntsville, Alabama, and Nashville, Tennessee. Being "Nannie" was her favorite role of all.

By 2015, Wanda was struggling with some day-to-day tasks, but she and Bill kept their focus on what they could still do. So, when an opportunity arose to take a two-week, 5,000-mile road trip with friends, they packed their bags and headed off to see Yellowstone, the Grand Canyon and Bryce Canyon. Each morning in the hotel room, Bill would help Wanda dress, style her hair and apply makeup.

"Before then, I didn't even know my way around her makeup vanity," Bill says. "I had never used hairspray and didn't know what all the different makeup brushes were for, but I wanted to make sure that she looked and felt like herself."

Fighting feelings of gloom and doom

Dementia is not just a memory disease, but rather a constellation of symptoms characterized by memory loss, loss of executive functioning, personality changes and impaired reasoning. In some cases, dementia is reversible, such as when it is caused by a vitamin deficiency, medication side effects or a thyroid disorder. However, dementia caused by Alzheimer's disease and Lewy body dementia (LBD) is generally progressive.

Being diagnosed with dementia can bring out some heavy emotions. Anger, denial, fear and sadness are common reactions. But living with dementia isn't all gloom and doom, says Dr. Upinder Singh, MD, a geriatrician at HCA Healthcare's Southern Hills Hospital and Medical Center in Las Vegas.

"I want everyone to start thinking about dementia as we already think about high blood pressure or diabetes," Dr. Singh says. "We don't cure these diseases, but we do control and manage them. It's the same thing with dementia.

"As a society, we still think dementia is a one-way street and nothing can be done about it. There are actually lots of things, if you do them the right way, that can help people with dementia lead as normal a life as possible for as long as possible."

Take, for example, Pat Summitt, the women's basketball coach at the University of Tennessee, Knoxville from 1974 until 2012. In 2011, at the age of 59, Summitt was diagnosed with early-onset Alzheimer's disease. She finished the season as head coach and, along with her son, Tyler, started a foundation that raised millions of dollars to help fight Alzheimer's disease. But she wasn't finished yet. She went on to write about her struggles with the disease with the help of co-author Sally Jenkins.

"What I hated most about the Alzheimer's diagnosis was all the 'can'ts' that came with it," she wrote in Sum It Up: A Thousand and Ninety-Eight Victories, a Couple of Irrelevant Losses, and a Life in Perspective, which was published in 2013.

"I was determined to make a list of the cans: I can continue to work for as long as possible--I refuse to stay at home and rot away. I can resist the pressure to retire and disappear. I can decline to be afraid or self-conscious. I can try to be an example: it's easy to tell people how things are done; real teachers show people how things are done."

This mindset may not change the course of diseases like Alzheimer's or LBD, but it can help people fight feelings of hopelessness and focus on what brings them joy in the here and now.

Healthy living helps

Though medication may help manage dementia, lifestyle changes are often the most helpful for easing day-to-day symptoms and slowing the condition's progression. You can probably guess the prescription: Stop smoking, curb alcohol intake, exercise regularly, and avoid foods high in saturated fats and refined sugars. Eating a balanced diet that's rich in fruits, vegetables and lean proteins and healthy fats is a great way to support brain function.

Adding turmeric to your diet may be beneficial, too, Dr. Singh says. This spice is commonly used in Eastern cultures and contains curcumin, a compound with anti-inflammatory properties that may improve brain function in patients with Alzheimer's.

Dr. Singh also advises his dementia patients to engage in regular social interaction and seek out activities that stimulate thinking and memory. A report from the Cochrane Library in the U.K. found that people with mild to moderate dementia were able to slow down memory loss by doing things like playing word games, doing puzzles, discussing current events, making music, baking or gardening.

This may explain why Glen Campbell was able to complete a two-year farewell tour after his Alzheimer's diagnosis in 2011. Even after he came off the road, supportive friends and family encouraged him to keep going to his studio, where he recorded one final album in 2013.

Finally, it's critical that people suffering with dementia don't ignore their mental health. Dementia can affect mood, but some emotional effects may be reduced by avoiding stress and addressing anxiety and depression with a therapist or doctor.

Surrounded by love

While parallels can be drawn between living well with dementia and living well with other chronic diseases like diabetes, there's at least one major difference. Whereas diabetes mostly affects the individual, dementia touches the entire family.

As Wanda Edwards' mental capacity declined, Bill's caregiver duties grew. At first, he was helping her remember things and boosting her ego, but eventually he had to take over laundry duty and cleaning the house.

"My most important role now is to take care of her," says the 78-year-old Aberdeen, Mississippi, native.

"You don't know what patience is until you care for a person with dementia," he says. "This job takes a lot of patience and a lot of love. I've cried countless tears in prayer for God to give me the patience and strength to take care of her."

Although Wanda's dementia has progressed into an advanced stage and she has moved to an assisted living facility, Bill still tends to her daily. He brings her daffodils in spring and has figured out how to display family photos on his wife's 42-inch TV. And he's always thinking up ideas to put a smile on his wife's face. Reminiscing about "Camp Nannie," a summer tradition for their grandchildren, has done the trick lately.

Every day, he takes care of her between breakfast and dinner, then an aide takes over for the rest of the evening.

"When I leave at night, I'll say I'm going to go get some supper and that I'll be back in a little bit," he says. "I never tell her I'm going home because, honestly, this isn't home without her; it's just a house. But I also don't want to upset or confuse her."

Dr. Singh has never met Bill, but he describes him to a T when talking about the ideal dementia caregiver--attentive, patient, accepting of help and caring.

Dr. Singh urges family members, "Go with the flow as long as it's not hurting them. Does Mom think it's 1967 or that Ronald Reagan is still president? Does Dad not want to take a shower today, but he's still clean from yesterday? Ask yourself, 'So what?' Just go with the flow. If you're always correcting them, they'll get agitated, stressed out and eventually withdraw."

Bill admits this was the hardest part of his caregiver role to get right. He often caught himself correcting Wanda, reminding her of this or that. "One day I realized that it did no good to say, 'Well, that's not right,'" he says. "It took me a while to get there, but once I did, we were all better for it."