Cindy Kaigama knows firsthand the challenges of caring for a loved one with Alzheimer’s disease. She walked alongside her father from diagnosis to wrenching end-of-life experiences. Now regional health systems director for the Alzheimer’s Association of Minnesota-ND, Kaigama is making sure care for everyone’s family member and friends is timely and top-notch. The wife of a Nigerian immigrant and mother of two, the public health leader came to the organization after years of advocating for better health outcomes for marginalized communities, particularly around diabetes and heart disease. She talks about a new program showing promise in training health professionals in the growing field of dementia diagnosis and care.
Q: Let’s start with the scope of the Alzheimer’s challenge.
A: The number of Minnesota residents aged 65 and older currently living with Alzheimer’s is 99,000. That number is expected to jump to 120,000 by 2025. Alzheimer’s is now the fourth leading cause of death among Minnesota seniors, up from sixth just one year ago.
Q: And we can’t sugarcoat the reality that front-line providers feel largely ill-equipped to diagnose and treat the disease.
A: A newly published report from the Alzheimer’s Association revealed a dramatic need for more training to help primary care physicians and others meet the growing number of cases of Alzheimer’s and dementia. The report found that 90% of primary care physicians expect to see an increase in people living with dementia during the next five years but only 50% say the medical profession is prepared to meet this demand. Nearly one-third report that they are “never” or only “sometimes comfortable” answering patient questions about Alzheimer’s or other dementias. Fifty-one percent said there are not enough options for continuing education and training.
Q: Enter Project Echo, which is?
A: It’s a national, virtual health training program that educates clinics on several disease topics including dementia. We offer Project Echo to primary care providers. The goal is to increase their confidence and knowledge about Alzheimer’s and dementia. Through video conferencing, we bring in experts who cover diseases causing dementia, signs and symptoms, the needs of caregivers, advanced-care planning and end-of-life issues. They present cases of real patients which adds depth to the education. We offer the training twice a year for six months over the lunch hour, which includes 12 continuing medical education credits. And it’s at no cost to health systems. (alz.org/mnnd).
Q: Who is participating so far?
A: We’ve trained 91 providers in 27 clinics in 10 states, in urban, suburban and rural areas. In our chapter, we’re working with a clinic in Rolette, N.D., population 605, Ray, N.D. population 829, as well as Minnesota Community Care’s Eastside Clinic in East St. Paul and LaClinica in West St. Paul, which together serve more than 5,200 people over 65.
Q: What do early results show?
A: This is only the second group we’ve trained after the initial pilot, but 95% of participants said that after participating they changed the way they care for patients and the quality of their dementia care improved.
Q: The benefits of early diagnosis?
A: It helps you plan your life while you’re lucid. It prevents you from being taken advantage of and helps your family prepare. And there are safety issues to consider. There are people who are driving with undiagnosed dementia. And what if you’re babysitting your grandchild? An early diagnosis allows you to make changes so you can continue to live your life. There are people who live over 20 years with Alzheimer’s.
Q: I believe your passion for underserved populations came out of a personal experience.
A: Absolutely! It’s what drives me to continue this work. I moved here from Detroit to attend graduate school; working in the health profession was not even on my lens. I was an entrepreneur focused on girls and women. I was always very healthy and physically active. But at a primary care visit, key health concerns were missed and I almost lost my life. I switched my career as a result of how I was treated. I learned that African Americans, women in particular, have the highest risk factors for diabetes, pre-diabetes, heart disease and Alzheimer’s, but care is often delayed or inadequate. In 2009, when I discovered there was no one at the table who looked like us to help us make health decisions, I became an advocate for high-risk and underserved populations.
Q: How are clues missed in the diagnosis of Alzheimer’s?
A: Aside from providers feeling unprepared on their end, the stigma associated with dementia persists that might delay diagnosis. Women might be told they are in early menopause, stressed or just experiencing normal aging. Or they do not know. For example, there’s no word for Alzheimer’s in some immigrant communities. When I was younger, I remember hearing elders saying that Grandma was just senile or getting old or even “losing their mind” due to mental health problems. But Alzheimer’s and other dementias are a brain disease. When you have heart disease, nobody stigmatizes you. The good news is there is hope. Early diagnosis and detection can change the course of a person’s life. If you notice a change in yourself or people you care about, talk to your primary care doctor.