When considering persons with developmental disabilities, we, as a society, have changed our perspective. 50 years ago, persons with developmental disabilities were hidden in our communities. At the time, this population was called "mentally retarded." The name took on a negative connotation. These persons were considered flawed, a burden to society. It was 1975 before all children with disabilities were guaranteed a free appropriate public education. Today this population has become integrated into our communities and supported in work and living environments. We, as a society, have become much better at recognizing their abilities and uniqueness and promoting quality of life.
However, our perspective of persons with dementias remains one of negativity. We may see a person who no longer has abilities, who requires constant care, who can no longer communicate in a meaningful way. We see this person as no longer having the potential to engage in activity or therapy, no longer having a place in our communities. Today, the person with dementia is often a target of social prejudice. When we project this limiting myth, we rob the person of his or her potential to participate and experience feelings of success.
I believe lack of knowledge of the illness and fears of the unknown perpetuate this problem. Until we change this perspective and become educated, our growing population of persons with dementia will not flourish. "In very many cases, we find that the process of dementia is the story of a tragic inadequacy in our culture, our economy, our medical system and our general way of life" (Kitwood, p.41).
As therapists in long-term care, assisted living, and home care, we work in areas where the majority of our clients have some dementia. It is imperative that we are able to view these clients as individuals with abilities and with the potential to engage with others to perform at their best ability, to be recognized as a member of the community and respected for their individuality.
When physical needs have been met, maintaining personhood is the central task of dementia care. It involves enabling the exercise of choice, the use of abilities, the expression of feelings, and living in the context of relationship (Kitwood, p. 60).
As therapists in these arenas, we must be leaders in promoting this new perspective. It requires the understanding of the "person-centered approach." It requires making the paradigm shift from identifying disabilities to identifying abilities in the person; from following rigid protocols (based on a specific diagnosis), to creating individualized, adapted plans that match the cognitive abilities and the interests and values of the person.
Knowledge of the Allen Cognitive Model and the Allen levels and modes will assist the therapist in identifying the person's remaining abilities. Understanding the theory and levels allows the therapist to identify the person's unique cognitive functioning, influenced by values, culture, interests, and social support. It provides the therapist with the information for the "just-right challenge" by matching the complexity of a task with the individual's cognitive abilities. And it facilitates a sense of empathy for the person with the understanding of the reason for the person's moments of frustration or negative behaviors.
The need for education regarding dementia and the importance of a person-centered approach is now being recognized in many countries. In March of 2009, the United States released The National Alzheimer's Strategic Plan. The solutions presented in the ASG report are initiatives that result in better coordinated care, more supportive services for families, and ultimately the prevention of the disease (acquired December 28, 2009, http://www.alz.org).
Japan launched a 10-year nationwide public campaign in 2005 called the Campaign to Understand Dementia and Build Community Networks. The campaign has four major programs as a country-wide project, which includes innovative projects to build a community where people with dementia can live a safe and independent life (acquired December 12, 2009, http://www.themythofalzheimers.com).
The government in England has recently proposed a new strategy to improve dementia care. It is designed to increase awareness of dementia, remove the stigma associated with it, improve diagnosis, and boost the quality of care (acquired December 3, 2009, http://news.bbc.co.uk/2/hi/health/7461400.stm).
As therapists, we can join this effort to change the negative perspective of persons with dementia by using our knowledge of the person's unique abilities to provide education to our families and care partners. We can help others know the right approaches and environmental setups that will facilitate those abilities and communication with others. This is how to get on the path to integrating persons with dementia into our communities and removing the stigma related to the words dementia and Alzheimer's disease.
In Japan, they are eliminating the word for dementia (chihou), and replacing it with a gentler word (ninchisyo). This apparently simple word change has led to a more positive response to people with dementia as individuals and members of the community, not outcasts (acquired December 28, 2009, http://www.themythofalzheimers.com).
Dr. Bill Thomas, the author of What are Old People For, stated "persons with dementia can be masterful experts in being." To change our perspective, perhaps it starts with calling dementia (which is literally defined as "out of mind"), something different. Maybe persons with dementia should be called something like persons participating in life "in the moment."
Just as we have changed our perspective of persons with developmental disabilities, it is time we change our perspective of persons with dementia.
Kitwood, Tom., Dementia Reconsidered: The Person Comes First, Open University Press: Philadelphia, PA, 1997.