When Lori La Bey’s mother started showing signs of dementia, she realized just how outdated the methods for supporting those with the disease were. She watched as her mom lived with dementia for over 30 years while being told by doctors that it was impossible for her to have the condition.
“For 10 years, she was misdiagnosed — she was told it was her menopause,” La Bey said. “I don’t blame the doctor, they were very uninformed back then, but it’s a matter of listening to the person in front of you and validating what they’re going through.”
La Bey says her mother was able to live with dementia for so long because she felt loved and supported at every step of her journey. It was that revelation that led La Bey in 2009 to start Alzheimer’s Speaks, originally a blog and eventually a podcast/radio network aimed at fostering important conversations about dementia, and shifting mindsets about how people go about caring for and supporting those with the disease.
“My goal was to bring people together and to raise our voices,” she said. “Back when I started out with the blog, I was just a girl who never really wandered very far from Minnesota, and it was shocking that people around the world were having the same issues, and feeling really lost and unsupported.”
One of the simplest mindset changes La Bey is pioneering is replacing the term “caregiver” with “care partner,” which she says helps emphasize the symbiotic and relationship-based nature of providing care, rather than having it be viewed as a burden or obligation.
“If we can get people to switch to the term ‘care partner’ or ‘care companion,’ that puts them back into a relationship with the person they’re caring for,” she said. “Even when someone’s in the very end stage, they still communicate, they can still give back, they can still love. It’s just in a different form.”
Think globally
La Bey is also working to empower people living with and caring for those with dementia by making it easier than ever to find resources specifically created for them.
She recently partnered with Dave Wiederrich, founder and operator of the Memory Cafe Directory, to create Dementia Map; an online database that helps people find educational resources, products, activities, housing listings, and more that cater to those with dementia. The database is searchable by keyword and location, but La Bey encourages people to look outside their communities to find resources.
“There are things on the other side of the world that can support you and help you through this,” she said. “What I tell people all the time is that we wouldn’t have Memory Cafes, we wouldn’t have dementia-friendly communities if we weren’t talking with people outside of our country — neither of those were concepts from here.”
Dementia Map also aims to help organizations of all sizes quickly and conveniently connect with the people who can benefit from their services and products. They can be listed on the site for free, and there are economical paid options as well.
In addition to the resources directory, Dementia Map features an Events Calendar that lists conferences, webinars, and support group meetings aimed at helping people on their caregiving journeys; a glossary of dementia-related terms that can prepare families for navigating the healthcare system; and a blog aimed at guiding users through the site’s many invaluable resources, and offering positive thought leadership about dementia care.See all Dementia Map has to offer by visiting www.dementiamap.com.