Recently, someone dear to me received the diagnosis of dementia, and I’ve been grappling with the frustrations of helping her adapt.
What kinds of activities are available to help someone with dementia remain engaged and active in the community? Which professionals can comprehensively assess a family’s situation and suggest solutions? Who can help caregivers when a loved one who’s cognitively challenged and depressed meets every suggestion with apathy or resistance?
Good luck getting guidance. “You are on your own to figure out what is needed and how to put a plan together in a meaningful way,” said Laura N. Gitlin, professor of community public health and director of the Center for Innovative Care in Aging at Johns Hopkins University in Baltimore. “It is a huge challenge.”
Dr. Gitlin is an expert on “person-centered” care for people with Alzheimer’s disease and the originator of a massive open online course (M.O.O.C.) on this condition, which will be offered through Coursera for five weeks starting in mid-October. You can sign up now.
What’s a M.O.O.C., you may wonder? It’s a class offered over the Internet, usually to anyone in the world who wants to sign up. Instead of sitting in classrooms, students watch video lectures and often participate in online chat rooms. Some of them take M.O.O.C.’s seriously, doing recommended reading and completing suggested assignments. But more than 90 percent dip in and out at their discretion, or drop out altogether.
The course offered by Dr. Gitlin and her collaborator, Nancy Hodgson, an assistant professor at the School of Nursing at Johns Hopkins, is free to anyone who wants to enroll. Dr. Gitlin and Ms. Hodgson expect about 20,000 people worldwide to do so, reflecting the concern internationally over Alzheimer’s.
I plan to take the course. Though my father had Alzheimer’s and two uncles had either Alzheimer’s or vascular dementia (years ago, doctors often didn’t bother to distinguish between these types of dementia), there’s much left for me to learn about ways to interact with people with these conditions.
“The point is to help people understand Alzheimer’s disease from a comprehensive perspective that encompasses not only its medical implications but social, psychological and environmental considerations,” Dr. Gitlin told me in an interview.
She’s especially focused on what she calls the “lived experience” of people with dementia. Caregivers and professionals “need to know about the different stages of this disease and how a person is functioning during these stages in their home, their family and their community,” she said. Only then does it become possible “to develop a supportive environment that allows the person to use the capabilities he or she still has.”
That’s what person-centered care is all about. Instead of dwelling on the losses suffered by someone with dementia — the things they can’t do any longer, the ways in which they are diminished — it means appreciating that “a person’s sense of dignity, of purpose, of needing and wanting a role remains intact almost to the very end,” Dr. Gitlin said.
We often forget this, because people with dementia often aren’t able to express it.
Recognizing that people won’t sit through long online lectures, Dr. Gitlin and Ms. Hodgson have broken each class into 15- or 20-minute segments. Some will be Oprah Winfrey-style sessions with one of the doctors questioning a colleague from Johns Hopkins with expertise in a subject area — including Dr. Peter V. Rabins, an author of “The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life.” He will talk about assessing caregivers’ needs in the second week of the course, beginning Oct. 21.
Week 4 might be especially interesting to caregivers who aren’t sure how to deal with Alzheimer’s patients who are agitated, aggressive, apathetic, irritable, delusional, disruptive or emotionally distraught. Dr. Gitlin is developing non-pharmacologic interventions to treat troublesome behavioral symptoms and participated in writing an important paper on this topic, published in JAMA late last year.
Homework assignments will ask students to explore dementia trends in their region and evaluate case studies. Before the course, students will be asked to take a “myth-buster” test to confront and correct whatever biases they might have about dementia, Ms. Hodgson said.
After the course, Johns Hopkins will offer a series of Web-based seminars to caregivers and health professionals following up in more detail on the issues raised. Potential topics include safety in the home, activities for people with dementia and end-of-life care.
This effort to educate a worldwide audience about Alzheimer’s and other types of dementia is worth watching. Please let us know here if you learn about any similar efforts that might be of interest.