Advocating for people with Alzheimer’s disease (AD) has been Lori La Bey’s focus and life’s work.
She spent 30 years caring for her mother who had Alzheimer’s disease, Parkinson’s disease, and Lewy body disease. In 2009, she founded Alzheimer’s Speaks, a resource for people with the progressive disease and their caregivers.
AD makes up 60-70% of cases of people with dementia — a condition marked by a deterioration in cognitive function, including symptoms like forgetfulness, confusion, needing help with personal care, and other symptoms.
Globally, 55 million people have dementia, according to the World Health Organization. In the United States, 6.5 million Americans over 65 have AD. If no treatments or a cure are found, 13.8 million Americans could have the condition by 2060.
La Bey wants to share stories of hope and life, and help people with AD know they’re not alone.
She explains that while there’s often a focus on finding a cure, there are people with the disease now who need love and support. It’s important to take care of people with Alzheimer’s now, while also looking to the future.
The Alzheimer’s Speaks website provides free resources for people living with AD and their caregivers, including information about radio shows, memory cafes, articles, and information, as well as a link to Dementia Map, a global resource directory that connects people to an array of services, products, and tools, along with a glossary of terms, an events calendar, and a blog.
La Bey wants people to know the disease is fluid and changes as it progresses. She isn’t afraid to fight the stigma of AD and to talk about challenging topics like the Alzheimer’s Transition. She says people are being diagnosed early and many live longer, which means those with Alzheimer’s can live with the disease in different stages, from early to middle to late stage.
La Bey is adamant about getting rid of the all-or-nothing idea that a person diagnosed with Alzheimer’s can’t participate in society.
“A person is still a person and [AD] can’t take away their soul in their heart, their ability to love, and their ability to participate,” she said.
Still, participation may be at a different level. For example, people with Alzheimer’s are often able to do a lot during their early disease stage, but they may get pushed to the limits. For example, they may get overwhelmed with tasks, but that doesn’t mean they need to stop. Instead, they need support and to have the task broken into manageable steps.
La Bey reminds caregivers not to give up on a person with AD. Instead, encourage them to do the tasks on their own time frame and with support.
“Just because they can’t do something today doesn’t mean that they can’t do it tomorrow,” she said.