Myriam Marquez suspected she had Alzheimer’s when, while driving a familiar route home, she came to a four-way stop and realized she didn’t know where she was. The confusion lasted a short time, but Marquez, 66, whose father and six uncles all died of Alzheimer’s, knew what it could mean. She went to a neurologist and although the tests showed nothing was wrong, a similar incident a year later prompted her to undergo DNA testing. The test was positive for mutations in the familial gene presenilin 1, an indicator for Alzheimer’s. That was more than three years ago, and Marquez, who had a successful law practice in the Seattle area, is now a full-time advocate for Alzheimer’s research and early diagnosis. She also is a peer-to-peer adviser for the Seattle-based Western and Central Washington State Chapter of the Alzheimer’s Association, serves on the national association’s Early-stage Advisory Group and is the first person diagnosed with Alzheimer’s to serve on the local organization’s board of directors. “What I decided to do was to be proactive. I chose to go out there and do everything I can to take Alzheimer’s out of the closet. It is a hidden disease. I believe that unless there are those of us who have the courage to go out there and put a face to Alzheimer’s, a cure is not going to be found,” Marquez says.
Marquez isn’t alone. More than 5 million Americans are currently living with Alzheimer’s—approximately 150,000 reside in Washington state. According to the Alzheimer’s Association, one in three seniors die with Alzheimer’s or some other form of dementia.
“‘Dementia’ is an umbrella term, like ‘cancer,’” says Keri Pollock, communications director for the Alzheimer’s Association’s Western and Central Washington chapter. It is defined as a decline in mental ability that will become severe enough to interfere with daily life. “The most common cause of dementia is Alzheimer’s, which accounts for 60–80 percent of all dementias.”
While there currently is no laboratory test to definitively diagnose the onset, or type, of dementia—a confirmed diagnosis can only be made post-mortem—most diagnoses are made based on symptoms and a series of tests, including magnetic resonance imaging (MRI) and positron emission tomography (PET) scans.
“Alzheimer’s is a progressive, degenerative and fatal disease, but some research is demonstrating that non-pharmaceutical approaches can delay the progression, allowing a person with dementia to stay independent longer,” says Pollack. “Twenty years ago, we recognized that there is still a lot of living to be done with Alzheimer’s and related dementias, especially if you are diagnosed early.”
The Seattle area is home to a wide variety of options for dementia patients and their families. In addition to pioneering programs developed to help individuals suffering from dementia remain active (see sidebar, page 33), many local senior living facilities are offering innovative memory care that focus on creating an active and social environment for dementia patients through settings and activities that trigger familiar reminiscences. Local residential facilities, in particular, are offering groundbreaking memory care support programming.
Nora Gibson is executive director of Full Life Care, an organization that offers services and housing options for frail elders and individuals with chronic or terminal illnesses or debilitation in King and Snohomish counties. In addition to offering adult day programs specifically targeted at individuals with moderate to severe Alzheimer’s, Full Life also offers home health care and two memory care homes: Gaffney House on Capitol Hill and Buchanan Place in Columbia City. With 12–14 bedrooms, they offer an alternative to larger residential facilities and smaller adult family homes.
“Typically, most of the residents are not doing well in other memory care settings because of behavioral issues, and we find we are able to do a good job working with them. We wanted to create a 24-hour option that was very high quality and would meet their needs,” says Gibson.
One of their residents with dementia, for example, exhibited sleeping and eating patterns that were disruptive to the staff of the facility she lived in prior to coming to a Full Life memory care home. “She is a delightful person, but likes to walk around a lot and talk a lot. [The staff at the other facility] was sedating her too much to get her to go to sleep. At our place, we have 24-hour [a day] caregivers. We ended up decreasing her medication and her ‘inner Alice’ came out. We can accommodate those behaviors,” says Gibson. Gibson’s own mother lives at Gaffney House. “I’m just in awe of just how well the staff cares for her; they get a personal attachment to the residents,” she says.
Providence Mount St. Vincent—known as The Mount—in West Seattle also offers a flexible and accommodating program for its residents with cognitive challenges. “All behaviors have meaning. Even though someone may not be able to verbally express themselves, our whole philosophy is if we really know their history, we are better prepared to help them,” says administrator Tom Mitchell. Because of their whole approach, which includes responding to behavior without drugs and making efforts to understand the behavior of individual residents and anticipate their needs and habits, Mitchell says, the staff at The Mount has been able to reduce the level of psychotropic drugs to almost zero.
The facility doesn’t segregate its residents based on diagnosis and offers both assisted living apartments and skilled nursing “neighborhoods”—clusters of private and shared rooms for about 20 residents who will benefit from 24-hour nursing care. “We believe some memory loss is a natural part of aging. If we were to segregate, there is a tendency to change our approach to care based on a resident’s diagnosis,” explains Mitchell.
Offering robust music, arts and exercise programming for residents, The Mount also has an onsite child daycare center, incorporating intergenerational activities into its programming as much as possible. “The kids are really open and they are fairly fearless. And being around children is some of that long-ago memory that you don’t necessarily lose,” says Mitchell. “It adds a richness to the experience and helps to remind the residents of their kids when they were young.”
Fond reminders of days gone by are at the foundation for Aegis Living’s “life skill stations.” Aegis, which has 30 senior living communities in California, Nevada and Washington and five in development, is a leader in memory care innovation, and incorporates these stations into each of its residences.
Designed to help redirect residents if they wander or become agitated, life skill stations also help to facilitate conversations among residents and their loved ones, and provide comfort to residents using familiar settings. Examples include the kitchen station, which may be outfitted with an older-style, non-working stove and a monitor playing an episode of Julia Child’s cooking show; or the road trip station, which may include a Route 66 road sign, a road trip game, and a variety of maps.
“In each of our communities, there is also a courtyard where residents can walk freely, and are extensions of the life skill stations,” says Aegis’ chief wellness officer, Shirley Newell, M.D. These “memory care gardens” are designed with a façade that replicates an old-fashioned version of the neighborhood surrounding it—in the Madison community, this includes a vintage car parked in a garage, a bus stop, malt shop and old-style home fronts. The courtyard in the planned Marymoor community, meanwhile, will be similar to a campground, complete with 1967 Airstream trailer. The idea behind these spaces and vignettes is to create familiar settings for dementia residents, who can wander safely and reminisce, as well as socialize with other residents. Aegis also hosts era-themed events for its residents and family members, such as a recent Jumpin’ Jive Lounge, where participants dressed up in 1950s attire and danced to music from the era.
Although these Seattle organizations, and others, have taken leadership roles in addressing the needs of individuals with Alzheimer’s and other forms of dementia, Marquez sees gaps in services that still need to be addressed.
“The issue that is really important to me is a program for people who live alone. There are a lot of people with dementia who live alone; there is no one there in the house or the apartment to see how they are doing,” she says. Marquez says this even impacts research being conducted on dementia: “When it comes to [research trials], for those of us who want to volunteer, the vast majority of [trials] require someone live with the person or have daily contact with the person to monitor them.”
For her own health, Marquez keeps a daily journal to track the progression of her disease. She encourages those with a family history of Alzheimer’s to seek early diagnosis and treatment, and to also get involved in the Alzheimer’s community. Most important, she adds, “Just have fun. We have a limited amount of time. Let’s make the best of it.” ✚