Molly Middleton Meyer
We’ve been inundated with the grim numbers and the equally grim picture they paint for our aging loved ones and us. The current dementia narrative, a list of depressing statistics, reads something like this: Over six million Americans are living with Alzheimer’s disease. One in three seniors dies with the disease. Women and people of color are disproportionately affected. The personal toll it plays on caregivers is devastating. Our economy is being crippled by related healthcare costs. The number of diagnosed cases will likely climb to over 13 million by 2050. Is it any wonder older Americans fear getting Alzheimer’s Disease more than cancer, heart disease and stroke combined?
As a memory care professional who has worked in the field for over 10 years, I’m tired of the dispiriting narrative. While I do not challenge the daunting statistics, there is another narrative at play and it rarely makes the headlines. It is a narrative of creativity, innovation, possibility, and hope. Amazing things are happening in the world of memory care. Here are four areas of focus you may not have heard much about:
Educated and Impassioned Professionals
Providing next level services for people with progressive dementia requires the cooperative services and support of educated and well-trained professionals, people who are not only educated about the disease, but also passionate about providing person-centered care. Ten years ago, after living through the diagnoses, decline, and subsequent deaths of my father and mother to Alzheimer’s, I entered the field to be a changemaker. I didn’t like the status quo so I set out on a personal quest to change it.
While not all of my professional cohorts originally entered the field to make waves, many are now on the forefront of memory care innovation, inspired by fresh ideas and out-of-the-box “what ifs.” They are doctors, nurses, counselors, caregivers, memory care administrators, home health and hospice aides, and people like me who have dedicated themselves to providing purposeful, whole brain programming like poetry and memoir writing, drumming classes, yoga therapy, horticulture and culinary programs, community service opportunities, historical discussion groups, sensory-based activities, dancing, meditation, technology exploration, jewelry making, language learning and so much more.
The new breed of memory care professionals choose an increasingly specialized education and are more informed than ever about optimizing a person’s quality of life at every stage of the illness. They are excited about the contributions they are making as they revolutionize the memory care industry, developing new models of care to better serve patients and their families.
MCI Awareness and Intervention
Mild Cognitive Impairment (MCI) is a condition that causes noticeable, but generally mild cognitive changes. It primarily affects a person’s short-term memory. A person with MCI may lose track of important information such as appointments, birthdays, and other important dates. They may forget recent conversations or repeat a story. Sometimes MCI affects other cognitive skills such as judgment and spatial perception. Families notice the cognitive changes, but attribute them to normal aging. MCI is not a normal part of aging.
Some people diagnosed with MCI live out their lives with the disease, capable of functioning safely in their home environment while accomplishing the tasks of everyday living. For others, MCI may be the beginning of a progressive form of dementia like Alzheimer’s Disease. Regardless of its disease trajectory, we now understand that an MCI diagnosis warrants immediate intervention. The goal is to diagnose the disease early and develop a plan of action that includes a specialized whole brain fitness program which includes exercise, diet, cognitive activities, and socialization.
The most innovative memory care communities have incorporated research-based programs and activities especially designed for people with an MCI diagnosis. These residents gather as a group and participate in a variety of all day activities led by specially trained enrichment leaders. Activities include exercise, cooking, gardening, art therapy, music therapy, language lessons, interaction with technology, political and ethical discussions and more. The participants are continually challenged, but not frustrated, the key to an effective program. They are also given cognitive assessments regularly to determine whether there is disease progression.
Innovative Programming at Every Stage
Memory care programming has changed dramatically over the past several years, especially programming designed for people living with mid-to late-stage progressive dementias like Alzheimer’s. What goes on behind the secure doors in innovative memory care communities is not the stuff of nightmares. Visitors are often surprised to discover a loving and joyful community of residents who are nurtured by highly-trained caregivers and engaged by certified activity leaders.
Up until the end stage of the disease, most people are capable of moving their bodies, singing, appreciating music, participating in creative activities, engaging in discussions, solving problems, enjoying sensory activities like hand massages, contributing to the community, socializing, and finding purpose. The best memory care programs provide personalized opportunities for their residents to engage in as many of these activities as possible, not just occasionally, but every day.
Increased Variety of Care Settings
To be sure, the cost of caring for a loved one with Alzheimer’s Disease is daunting. Most Americans do not have long-term health care insurance to offset the costs. Without it, professional care and premiere programming is financially out of reach for most people. As new care models emerge, including continuum of care communities that allow residents to age in place regardless of a change in healthcare needs, options are opening up.
Board and care homes, also called residential care facilities or group homes are secure buildings or private homes designed for a maximum of 20 residents. Rooms can be private or shared by two residents. The memory care residents receive care and meals and are attended to by round-the-clock staff. While a small group environment is often more affordable, and an excellent option for couples facing cognitive challenges, or residents whose behavior is not appropriate for a larger community setting, most do not offer progressive, purposeful programming. Industry leaders recognize the increased affordability of residential environments and are working to implement quality programming. It’s a work in progress, but one that shows enormous potential.
Perhaps the most innovative (and controversial) memory care living environments are dementia villages. The idea originated in the Netherlands, but has inspired the creation of several dementia villages in the U.S. These small towns are artificially created communities where every resident has dementia. The towns have realistic stores, theaters, parks, and restaurants. Residents are free to move about the city while being monitored 24 hours a day by cameras and caregivers who dress and act as cashiers, servers, and gardeners.
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Advances in memory care are ongoing. As people search for affordable, high-quality care that includes innovative programming, industry leaders will search for ways to meet the need. While the statistics won’t change, the opportunities for a high quality of life certainly will. With change comes a new narrative, one of hope, not fear.
Molly Middleton Meyer is a certified dementia practitioner, author, and founder of Mind’s Eye Poetry, an innovative creative writing program for people with cognitive impairment. She has dedicated her professional life to destigmatizing dementia by developing cutting edge memory care programs and service.
