This is a guest post submitted by Martha Stettinius, author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir.”

At age 80, my mother is living with advanced dementia (vascular dementia and probable Alzheimer’s disease), and I’ve served as her primary caregiver for 7 years. She’s lived in my home with my husband and two young children, then in assisted living, a rehab center, a “memory care” facility, and now the dementia ward of a nursing home.

In the spring of 2005, my mother lived with us briefly, but she was unhappy and needed more independence, so we convinced her to move to a nearby assisted living facility. With mild cognitive impairment, she seemed afraid to go to activities, which were held in large groups that included the higher-functioning residents of the adjacent “independent living” facility. Many of the assisted living residents had some degree of dementia, but activities and care seemed tailored to the more independent residents. Staff did not receive extensive dementia training, and interactions were minimal. To my dismay, Mom spent most of her days watching TV.

Late in 2007, after falling and fracturing her pelvis, my mother suddenly became incontinent. The fall may have accompanied a small stroke. After Mom spent some time in a rehab center, the assisted living facility staff were not allowed (by their contract, and by our state’s regulations) to physically help my mother change her adult diapers. I had to hire private aides to come in for several hours a day. The facility’s case manager told me that my mother’s needs had fallen into a “gray area.” Shortly after that, when one of the private aides found Mom in bed one morning soaking wet and uncovered, her adult diaper ripped off, I knew it was time to move her. But where?
Mom would live in this memory care facility for nearly 3 years—years that seemed her happiest in a long time. Mom rewarded the staff’s affection with lots of smiles and laughter. Firmly in the middle stages of dementia, she joined the activities, sparked a romance with one of the men, and generally enjoyed living in the moment, no longer tortured by awareness of her disease. Although she had her moments of agitation, the staff all received special training in dementia care, and they knew how to keep her calm and feeling safe.I toured a local “memory care” cottage, most impressed not with the plush, home-like environment—the light-filled windows, the green plants, the white, long-haired cat lounging on the hearth—or the seeming contentedness of the residents who listened to oldies on a CD—but the forthrightness of the administrator who gave me the tour. When I asked her, “At what point, exactly, would my mother have to move out?” she told me, “Residents must be able to feed themselves, and be able to walk for at least a few steps, for example from the bed to a wheelchair.” That’s the kind of answer I’m looking for, I thought. No “gray areas.”

By May of 2010, however, she seemed to have forgotten how to feed herself, and was losing weight. (She was also running out of savings, and the private memory care facility could not accept Medicaid.) I looked for a nursing home in the area that was on The Eden Alternative registry—a nursing home that follows the philosophy of person-centered care championed by Dr. Bill Thomas and his wife, Jude—or a nursing home that was part of the new Green House Project (also a Bill Thomas initiative), but the closest were 3 hours away.  Mom moved into a local nursing home, where for the past 2 years she has received excellent physical care, if not the emotional sustenance and vibrancy one might find in an Eden Alternative nursing home or a smaller, more intimate home such as a Green House. She lives on the dementia floor, where staff members receive some specialized training, but residents in the final stage of dementia rarely enjoy individual attention or appropriate stimulation. Though she can no longer speak, and is immobile in a wheelchair, Mom still enjoys people and shares her brilliant smile. She is still “here,” and deserves to have a life that includes more than being spoon-fed her pureed meals, and napping through group activities.

I’m hopeful that our new National Plan to Address Alzheimer’s Disease will increase public understanding of Alzheimer’s and the need for specialized care, and that funding and answers will surface as more and more Americans fall prey to dementia.  However, we need to press the Department of Health and Human Services to recommend a minimum number of hours of dementia training for health care providers and facility staff. According to the National Council of Certified Dementia Practitioners, individual states may or may not require dementia education, and their regulations vary by industry (home care, adult day care, assisted living, nursing homes, hospitals, and hospice). Some states, for example, require absolutely no dementia education for staff in the dementia units of assisted living. This must change.

 

About Martha Stettinius, the author:

Martha Stettinius is the author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,”available at major online book retailers. She serves as a volunteer representative for New York State for the National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com.