Published in Kaw Valley Senior Monthly – November 2018

November is National Alzheimer’s Awareness Month. Alzheimer’s Disease (AD) is a disorder which accounts for 65-80% of dementia diagnoses. Diagnosed by physicians and neurologists with detailed personal history-taking, testing, exams, scans and ruling out of other possibilities, AD is permanent, progressive and can lead to memory, judgment and personality changes. Other common dementias include vascular dementia, Parkinson’s dementia and frontotemporal lobe dementia. Currently, five medications are approved to slow the progression of symptoms but do not change the underlying pathology.

Affecting nearly 2% of the US population, research is moving quickly to find treatment and a cure for AD and other dementias. Regionally, Kansas City has one of only 31 National Clinical Research Centers in the country. Kansas is currently the only state without a State Dementia Plan, but a workgroup headed by the Kansas Department for Aging and Disability Services is presenting a comprehensive plan in January 2019. Locally, an Action Committee to Protect Kansans with Dementia is working to ensure Lawrence and Douglas County become leaders in good memory care practices.

What is memory care? Some memory care homes break the mold. Walking into a lovely sun filled home surrounded by trees, a fire crackling in the fireplace, many visitors are surprised. Two women, one who was a CEO, and another, a former teacher, are discussing the headlines while sipping coffee. One professor emeritus is writing and looking up from time to time to add his thoughts to the conversation. Simultaneously, another professor is in a comfy chair by the oversized windows reading the NY Times cover to cover. Meanwhile, a gifted photographer who lives here, observes all with his camera and hangs new 8 x 10’s in the media room for all to enjoy.

Trivia contests to access intact long-term memories, karaoke competitions, daily exercise, music and pet therapy, and evening movies watched together are all staples in this setting. Family and friends are welcomed round the clock and encouraged to join for meals prepared in an open concept gourmet kitchen. Autonomy, dignity, humor and camaraderie are possible in a setting structured to support these principles. This is the ideal of memory care today.

Stigmatizing those with brain change is no longer acceptable. Person-centered care and culture change are taking place in some memory care homes and should be the norm rather than the exception. Based on an experiential model which views everyone as still capable of learning, experiencing pleasure and meaning rather than a medical model which views an individual as suffering a tragic disease. Care is focused on the whole person and is guided from the viewpoint of the person experiencing it. Individuals experiencing dementia value safety while maintaining mental and physical stimulation.

Life history and preferences are important. The more individualized the care, the better. Staff know what time each person likes to get up, how to fix their coffee and made-to-order breakfast and how to help begin a pleasant morning. A family must know that staff members truly care and be able to trust them, so they can return to their role as spouse or child. Living successfully with AD or another dementia related illness must be a partnership between an individual, their family and a supportive care home.

Empirical evidence developed by Dr. Al Powers states memory care homes should have one direct care staff member with every four individuals, yet regulations may only require one staff for sixteen individuals. A quality memory care home should employ all their own staff and not meet staffing needs by using agency staff. The management staff should instill a feeling this is more than a job, it is a sacred trust. Commonly, institutions do not meet these expectations. Some of my most brilliant friends are living with a dementia related illness. I know a fine man who is engaging, funny and brilliant.He speaks ten languages and yet lives in one of our memory care homes. He may not remember he’s had breakfast already, but he knows what is important. He knows when someone is kindly and respectively offering him assistance. He knows how to enjoy himself. He feeds the fish in our pond, perhaps forgetting he has fed them several times before that same day. He likes to be outside listening to the birds and the wind in the trees, his face warm with the sunshine or in winter, sitting by the fire enjoying his adult son’s visit. He tells amazing life stories and in turn laughs at every joke over dinner with his friends here. Humor is frequent, joy is deep, living well is possible with a dementia related illness while residing in a supportive memory care home.