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How Family Caregivers Can Find Joy Through Understanding Dementia

Learning more about the disease can open up new avenues for happiness, connection

woman and her daughter in the kitchen
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When my father began to slowly succumb to Alzheimer’s, one of the saddest things about it was our inability to talk about the situation as a family. His slow slide into darkness was the elephant in the room. We longed for him to be transparent about what was happening so that we could remove some of the anxiety for all of us, especially him.

As my dad moved into his mid-70s, his judgment and cognitive abilities began to rapidly decline. During summers, when our extended family lived in nearby homes and came together, my sisters and I devised a plan to ease my mother’s caregiving duties and keep him occupied. After breakfast, she’d send him down the road to one of my sisters, and after that he’d walk up the road to my house for more conversation and coffee. At some point during our chat, his shoulders would sag. “This is so hard,” he would say, tears filling his eyes, but he would never speak the name of his disease, would never acknowledge what was happening.

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And so we all sat, locked in our inability to truly find joy with my father in his final years. Maybe if we had done more homework, understood more about the disease, we would have been better at anticipating things and experimenting more.

A new approach

When I saw the book Living in the Moment: A Guide to Overcoming Challenges and Finding Moments of Joy in Alzheimer’s Disease and Other Dementias by Elizabeth Landsverk, M.D., with Heather Millar, I was interested to learn how joy was even possible while watching a loved one being erased by such a cruel illness.

Landsverk, 61, a San Francisco-based doctor who is board certified in internal, geriatric and palliative care medicine, helps caregivers and families ease the journey with dementia and Alzheimer’s. As one of only about 3,500 full-time practicing geriatricians in the U.S., she addresses the most challenging medical, behavioral and financial/legal issues and is often the person called in to help work with families when other doctors or approaches have failed.

“It’s possible for elders and their families to live fulfilling lives after a dementia diagnosis,” Landsverk says. “I wrote this book to give families a straightforward map and toolbox for the road ahead.”

Understand changing needs

There is no one-size-fits-all solution when it comes to dementia, according to Landsverk. Each family or person needs to decide what works best for their loved one and their own situation. She reminds us that a person with dementia is still a grownup with feelings, needs and wants just like anyone else. They want to make choices about what they do and what they eat, even though they may not be able to voice their desires. “Even while their abilities are diminishing, they are still an adult,” says Landsverk.

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People with dementia aren’t trying to be difficult. They simply may not be consciously aware that they’ve changed, which is part of the disease. Dementia patients reflect their view of the world, which means they might get angry about little things, like cold coffee, being told they can’t do something or feeling coddled. They may also feel like they are a “hostage” if they are unable to participate in activities they used to do, like driving or writing checks.

Landsverk believes that a little bit of knowledge about the disease can make a big difference in how everyone moves forward. Beyond practical issues, such as how to find extra care, the legalities of medical directives and caregiver life skills, I was curious about what we could control by being informed.

“As we age, multiple changes happen in our bodies that affect our health and behavior,” says Landsverk. “Most of us have more fat, less body water, less reserve in the kidneys and liver. We don’t process alcohol the way we used to. And our brains begin to change.” She stresses the importance of understanding these changes and incorporating a healthy diet along with exercise into every single day to optimize for health.

“There are lots of ‘miracle dementia reversing’ claims or supplements,” Landsverk cautions, but no supplements or vitamins have been proven to slow down or prevent cognitive decline. The Global Council on Brain Health advises that a plant-based diet that is rich in fruits and leafy green vegetables is best, and 30 minutes of daily exercise has a positive impact on brain health.

Seeking Joy

Questions to ask yourself to help find joy for you and your loved one.

  • How has your loved one lived life? What are his or her general values and beliefs? What statements did he or she make about growing older and the end of life?
  • Before your loved one became sick, what was the most important thing in his or her life? What is most important now? What brings him or her joy?
  • What are your fears for your loved one? What do you hope to avoid? What are your fears for yourself?
  • Does your doctor see the bigger picture around this disease? How does your doctor feel about medications and pain management?
  • Do you have enough help with care? Can your loved one’s assets be used to help support care? Who else can assist, from family to local organizations such as your local county division on aging?

Remember: The goal is to find answers that conform to what your loved one would have wanted based on their current actions or past situations.

Finding new joy

Many things can bring joy, including focusing on the “now” with loved ones. “It’s finding the ability to live in the moment,” says Landsverk. She suggests caregivers start with thinking about what their loved one enjoyed in the past, but not get stuck there. Understanding what brought joy and then modifying those activities as the situation changes is one of the fundamental tenets of finding happiness with that person, according to Landsverk.

“They may no longer be able to paint pictures, but perhaps they can make collages. Eating out at a restaurant might result in an angry scene, but a picnic could be a lovely substitute,” offers Landsverk. “A night at the ballpark might no longer be possible, but maybe walking around the ballpark before a game or engaging your loved one in a game of dominoes with others could be pleasurable.”

Landsverk also emphasizes “the joy of connection.” Even for people who are no longer verbally responsive, there are ways to enjoy aspects of human interaction and experiences through touch or music. Music is particularly powerful, and our memories of songs reside in a slightly different part of our brains than words. Landsverk has observed people who cannot answer questions sing church hymns perfectly, bringing joy and comfort to all. She recalls a performance by a bongo player at a senior center where some older adults responded with joyful expressions and by swaying and “singing” along.

Try to determine what simple activities, including group ones, can still be enjoyed, such as going for a walk, watching children at the park or even just holding hands. The key is to try to keep the person with dementia active and engaged and try to bring them with you until they can no longer handle the situation. “We also need to recognize that giving up some of these traditions will be hard,” says Landsverk. “Try not to put yourself in a situation that will make you sad or depressed.”

Landsverk adds that “caregivers may grow frustrated, unaware that very simple adjustments to daily routines can sometimes make all the difference for a dementia patient." She reminds us that just like anyone else, people with dementia need meaningful activities to fill their days. The family is in the best position to help them find purpose in their day, even through small things.

Managing medication

One aspect of her work is helping families recognize that aggressive and agitated behaviors can often be related to medications commonly given for insomnia or anxiety. “Mis-medication can limit the joy of the elder,” says Landsverk. “Oftentimes when I take elders off certain medications, they are less confused and agitated, [which allows] them to engage more with family.” Getting the dosages right can often mean the difference between the family being able to keep their loved one home longer and the feeling of needing to put them in a nursing home. Equally important, according to Landsverk, is the treatment of pain. This is critical, since a loved one may become angry and withdrawn unless pain is treated appropriately.

‘Living in the now’

Families and patients need a reason for optimism, according to Landsverk, who has seen families and patients successfully meet the challenges of dementia. “Dignity, grace and even joy are still possible with the relevant information and an integrated plan,” she says.

There is a heartbreaking misconception, after families receive a dementia diagnosis, that life for that person won’t be worth living. “Nothing could be further from the truth,” she says. “Life can still be rich, but it requires that we reconsider some of our assumptions and expectations about day-to-day living and about dementia.”

“Living in the ‘now’ with your loved one means you can still enjoy good times together,” says Landsverk. She points out that for some, the quality of family life and the depth of relationships can even improve with dementia. The father who was always busy working now has time for his family; the son is able to spend more time talking with his mother. “Life can continue to bring love, joy and fulfillment.”

Lee Woodruff is a caregiver, speaker and author. She and her husband, Bob, cofounded the Bob Woodruff Foundation, which assists injured service members and their families. Follow her on Twitter and Instagram.

How to Care for Someone With Dementia