I’m Still Here: Engagement as Treatment for Dementia

A few years ago, I was conducting training for staff in a long-term care facility in Australia. It was a two-day training program, focusing on the use of the Montessori-based Activities Programming (MAP). I have been conducting research on the use of Montessori educational methods as a means of developing engaging activities for persons with all levels of dementia for a number of years (Camp, 1999, 2006, 2010), and training care staff and family members on its application on an international basis, as well. It has been heartening to see this approach being replicated in a number of countries and settings (e.g., Lin et al., 2009; Giroux, Robichaud, & Paradis, 2010). The emphasis of MAP is to focus on the strengths and capabilities available to persons with dementia, to create activity materials and procedures which capitalize on those strengths and the person’s interests, and to provide meaningful engagement with the person with dementia. The emphasis is on the person in the phrase “person with dementia,” echoing John Zeisel’s message in his book titled “I’m Still Here” (Zeisel, 2009).

On the afternoon of the second day of training, staff went out onto the units to apply their training. It was Christmas season, and a musical program was being held on the first floor while the training was taking place on the second floor—which housed residents with moderate to advanced dementia. The nursing staff had sent down all of the residents judged to be “able to get something out of” the musical program. As a result, the residents available for my trainees work with were not the highest functioning persons with dementia available. However, all of the trainees were able to immediately engage theses residents in activities. This was done in front of a company executive, who also had attended the training. In one instance, as a trainee began to approach a resident, a nurse on the unit said, “Don’t waste your time with her. There’s nothing there.” My trainee’s response was most heartening. She said, “Bite your tongue.”

There was one exception (there always is). Three of the trainees came back to me and said “There is a woman we cannot reach. She just does not react to anything we do. Show us how to engage her.” I always tell persons I work with or supervise that “I’ll never ask you to do something I would not or could not do myself, so may God have mercy on your soul.” With the three trainees in attendance, standing off to one side at a distance, I approached the woman, who was in a wheelchair, and pulled up a chair so that I could address her face-to-face. I introduced myself, and asked her permission to show her some materials that I thought she might find interesting. She stared blankly ahead, giving no response. Next, I took out some seashells that were of different tactile textures. I put one in her hand and gently moved her fingers over the smooth inner surface, saying “smooth” aloud. Then I replaced it with a shell that had a rough surface and let her fingers trace it, saying “rough” aloud. All the while I spoke in a calm, soothing voice making eye contact with her as much as I could. I repeated the smooth and rough demonstration, then thanked her for working with me. I said, “I enjoyed my time with you, and I hope that I can see you again. I will look forward to it.” As I turned and started to walk away, I heard the trainees gasp aloud. I approached them and said, “What happened?” They looked startled, and one said, “When you started to leave, she waved good-bye.” I then approached the woman, and waved good-bye to her.

This may seem like a very small thing, a very small achievement. But in reality, it is huge, because it represents the first step in a major shift in providing care and treatment to persons with dementia. As I said to my trainees on departing, “Your job is not simply to provide engaging activities to residents. It is to transform your organization, to become agents of positive change and a shift in how your residents are perceived.” This is the true nature of the “I’m Still Here”TM method of working with persons with dementia, in which MAP now is embedded.

As I’ve written in the past (Camp & Nassar, 2003), and emphasize in training seminars, the biggest barrier to providing good care to persons with dementia is a belief, often called therapeutic nihilism, which assumes that because a person has dementia that the person no longer is there, and that attempts to do more than “keep them busy” are wasted. Therapeutic nihilism emphasizes that nothing can really be “done” for persons with dementia, and that because of their cognitive deficits anything other than palliative care is a waste of time and a frustration to the person with dementia. As a result, those who believe in therapeutic nihilism create environments and care systems that become self-fulfilling prophecies.

There is only one way to reverse therapeutic nihilism, and that is to work miracles. The good news is that it is very easy to do. If individuals believe in therapeutic nihilism, and that persons with the diagnosis of dementia will never improve, never show competence, and only get worse over time, then when those individuals see persons with dementia: “waking up,” discussing why hydrogen was chosen as the gas to inflate The Hindenburg, anticipating trips to a museum, lecturing to children on the process of metamorphosis, and engaging with family and staff while in hospice care on the day that they die, then beliefs in therapeutic nihilism change. Seeing truly is believing, and the examples I just gave are real and recent.

Those of you reading this article have a vested interest in changing the way we think about persons with dementia. Almost all of us are affected by dementia. We have family members or friends who have been given this diagnosis. We worry about our own chances of getting the diagnosis. The way in which we think about and provide care and treatment for persons with dementia now is very likely the system that will deliver care and treatment to us if we develop dementia. It is time to get serious about changing our attitudes and perceptions about dementia. It is time to create systems that emphasize the “living” in the phrase “living with dementia.”

We are part of an international effort to emphasize that non-pharmacologic treatment of dementia is, indeed, treatment. This is a matter of providing basic human rights. When a person with dementia is engaged in meaningful activity, the person is truly present. My group of trainees in Australia decided to form a task force, and to become a support group for each other in their efforts to change the culture within their organization. They named themselves, “The Miracle Workers.” I invite you learn more about the philosophy and methods involved in the “I’m Still Here”TM method and MAP. I invite you to become a miracle worker.

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