By Jill Draper
Dementia might be our greatest long-term medical challenge. About one in seven Americans age 71 and older have this disease and numbers are expected to rise going forward, according to the National Institutes of Health. Even cases of early onset dementia are increasing.
Despite this, there’s not a lot of information for families or the medical community, says Christi Crawford, a licensed nurse and board-certified dementia educator and patient advocate.
“When you’re in nursing school, dementia is a paragraph in your textbook,” she says. “And the minimum requirement for anyone working with dementia patients in both Missouri and Kansas is three hours. That’s like just reading a brochure.”
Crawford aims to change this shortcoming through her consulting business she started two years ago, Dementia-360, that provides certification and training for healthcare professionals as well as individual families.
One client is a man in his 80s who lives near Belton. He and his wife have been married more than 50 years, and she now has Alzheimer’s. “I don’t know what to do,” he told Crawford. She met recently with the couple plus their adult son to assess the situation and prepare an action plan.
In this case the plan will include a list of recommended neurologists (the man is unhappy with his wife’s current specialist) and a list of questions to ask during their next appointment; tips for meeting with an elder law attorney for protecting their assets, including a farm; handouts on how to best communicate with his wife; weekly brain stimulation exercises; a care plan for handling situations as the disease progresses; and safe ways for his wife to keep participating in activities she still enjoys, such as gardening, cooking and grocery shopping.
“Too often patients are over-medicated,” says Crawford, who believes in using a non-pharmaceutical approach as much as possible. “And too often caregivers are told, ‘Here are some meds. Go get your affairs in order. Go online and google anything else you want to know.’”
Crawford has taken courses on dementia from experts in the United Kingdom, the Netherlands, Australia and New Zealand, observing, “They’re much further along in research and caretaking.” She offers training and various levels of certification through her business, including an inexpensive course for family caregivers, and is hiring two staff members to help with education and coaching. She’s also rolling out a nonprofit to support patients who can’t afford her fees, which are not covered by insurance.
One goal is to have a team teaching a full dementia class at nursing programs as well as auxiliary programs for speech and physical therapists, medical aids, general hospital staff—even dental hygienists.
Another goal is to form a local network of free support groups for caregivers of aging parents and relatives. She calls these “daughterhood circles” and expects the first one to begin meeting this fall, probably at a Prairie Village coffeeshop. “You had your childhood friends and your motherhood friends. Now it’s time to make your daughterhood friends,” says her flyer.
There are over 100 types of dementia, including Alzheimer’s (which affects more women than men), vascular (related to mini-strokes), Lewy body (which can involve hallucinations, tremors and rigidity), frontotemporal (which affects more men than women), and traumatic brain injury (related to sports and blows to the head). Many people have a mix of types.
Crawford can’t diagnose dementia, but she can test and score for cognition and depression. She notes that forgetfulness is not always a cause for alarm, recounting an incidence where she misplaced her car keys in the freezer while talking on the phone and trying to respond to a hungry teenager who needed a ride to sports practice. She was able to find her keys by retracing the sequence of events in her head, whereas someone with dementia might not remember being near the freezer.
Everyone knows someone who has dementia or has been impacted by dementia, says Crawford, whose plans keep growing. “This is my calling. My vision is so big—it’s become bigger than I ever expected.”