I’ve been working on a project in the area of mild cognitive impairment (MCI).
MCI might be a new term for some of us. MCI represents an intermediate stage of cognitive function between the changes seen in aging and those fulfilling the criteria for dementia and Alzheimer’s disease. The estimated prevalence of MCI in population-based studies ranges from 10-20% in persons older than 65 years of age. The number of individuals with MCI exceeds that of Alzheimer’s Disease and there are an estimated 5.4 million Americans of all ages with a diagnosis of Alzheimer’s disease.
The project I’ve been a small part of is a pilot class called “Optimize: Your Brain and Body Health.” It’s an eight-week course for people with MCI that combines cognitive practice and physical exercise. There have been several observational studies that show cognitive stimulation and physical exercise may be preventive against dementia and Alzheimer’s disease as well as MCI. Once we have trained trainers in this class, we expect it to be offered frequently in a variety of locations in 2014 and beyond.
I want to share some of my observations related to the new terms I’m learning through my work with Optimize. Person-centered care
is a practice that started in England the late 1990’s. The notion is that instead of someone else deciding what a person in need of care should be doing when they attend an adult day center or are placed in long-term care - i.e. breakfast at 8, BINGO at 9, current events at 10, arts and crafts at 11, lunch at noon, the person’s day revolves around what the person is interested in. This requires a lot more effort on the part of the institution. Ask Beth Meyer-Arnold, Director of Adult Day Services at Luther Manor. She has been offering person-centered care at the Luther Manor Day Center for 12 years. When people decide to take advantage of the services of the Day Center, they are interviewed about their habits, their interests, their work life and their family life. For the non-regimented folks, a snack bar with stools reminiscent of drug stores of the past offers food outside of scheduled meal time. Instead of offering the typical calendar of daily activities, Luther Manor Adult Day Center offers about 40 activities for groups as small as two ladies who enjoy knitting and chatting to a group of 10 or 12 who participate in a collaborative art project.
Person-centered care has directed my thinking about the lives of older adults and the lives of people with disabilities in a new way. I spend my leisure time doing things that I enjoy – reading, playing cards, listening to the music that I like, observing the things in nature that interest me such as birds and flowers, and so on. It would be difficult, if not depressing, to be forced to listen to music I didn’t like, to participate in discussions that I wasn’t interested in, to read a science fiction book or watch a movie about bridge building. We professionals in the older adult field and in healthcare in general are quick to tell people what’s good for them. “This type of exercise is best,” “that kind of mental stimulation is needed” is not going to result in commitment if the person isn’t engaged.Engagement
is another word in vogue. I like it. It’s the same concept as person-centeredness. The American Parkinson Disease Association’s Wisconsin Chapter has a program called Engage. APDA board member Jane Busch, who runs the program, first finds out what the person with Parkinson’s used to be engaged in – whether work or hobbies – and then discovers how to make adaptations that allow the person to still be involved. They have formed a group of guys who love fishing but can’t bait the hook or drive to the lake. Someone who has these abilities goes along. For the more solitary person who enjoyed woodworking but isn’t safe around their saws any longer, they have a bird house kit that they send to the home with complete instructions. The list goes on.
All of this equals a word that isn’t new: Respect.
A person with Parkinson’s or Alzheimer’s or MCI is a person, like all of us, deserving of respect. The diagnosis of a chronic illness doesn’t move someone into the category of patient, or Parkinsonian ( a term I detest), or “demented.” I have a 50% chance of developing Alzheimer’s by the time I’m 80. Will I then simply be “demented.” Will experts tell me what word search I should be doing to keep my brain as sharp as possible and what time I am suppose to play bingo? Or will someone, like Beth Meyer-Arnold or Jayne Busch, sit down with me to find out who I am? Will they respect me as a person, an individual with much to contribute. Because I hope for the later, I am happily giving my time to the Optimize program and the Engage program and anything that crosses my desk that will allow us to always make room for everyone.The 6th Annual Symposium for People with Parkinson’s and Their Families takes place on Saturday, September 14 at the Country Springs Hotel in Waukesha. Keynote speaker, John Bauman is a person with Parkinson’s who continues to “live well!” Numerous speakers and exhibitors, breakfast and lunch. $15 per person. To register call 414-805-3666.