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.
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.