How Family Caregivers Can Find Joy Through Understanding Dementia
Learning more about the disease can open up new avenues for happiness, connection.
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.
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.
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.