In the next 10 years more than 50 million new cases of Alzheimer’s disease are anticipated globally with no treatments in sight that can significantly delay the onset, slow the progress of the disease or offer a cure. We sincerely hope this prognosis changes in the near future as billions of dollars and some of the best minds in the world are working on this problem.
Despite some recent progress, because we don’t have a cure available and because Alzheimer’s is a difficult, challenging, long-lasting disease for both patients and caregivers its mystique is largely negative. By definition, an Alzheimer’s diagnosis today eliminates hope for a good life. A series of national workshops sponsored by the Alzheimer’s Association titled ” Longest Loss: Alzheimer’s Disease and Dementia” represents a good example of this attitude. The workshop description states:
When the diagnosis is Alzheimer’s disease or dementia, grief doesn’t wait for death. Grieving can begin in the doctor’s office when patients and families receive the news. Then, over a span of what may be a decade, losses associated with Alzheimer’s disease and dementia become a pervasive part of life for millions of patients, their families and friends.
While this may be true in some respects it is clearly a “glass half empty” approach. With every other illness, no matter how severe, we offer hope and warmth and the opportunity to live at least part of a good life. Most individuals with Alzheimer’s have years and thousands of long moments left in which they are conscious, intelligent and capable even if their behavior no longer matches our expectations of “normal” adults in Earth-reality. A negative approach is demeaning and, even meaning well, we have stolen their right to be considered a normal person and their integrity as a human being — in short, they have lost their “personhood.”
In the meantime we cannot wait. A cure for part of the problem and part of the suffering of individuals and their caregivers is available now. Pieces of this solution have been around for some time in caregiving research and practice. Within the Gemini MindPartner™ program we are hoping to make these parts stronger and widely available.
The Gemini MindPartner™ program is brand new. It’s both a real suite of tools for 2015 and a plan and vision for the future. The basic idea is to bring the best we have to offer the individual with Alzheimer’s in technology, in planning, in caregiving and in environmental support to the table NOW. Our friends and family with the disease get to live the most joyful, most complete life possible with our understanding, support and love.
Companion Minds Have Infinite Patience
Alzheimer’s caregiving is especially challenging and stressful. It was estimated that last year caregivers in the US spent 170 billion hours caring for family and friends with a huge economic and personal cost. At Gemini we believe that technology can help here along with the use of a virtual caregiving team approach. That’s an option that begins in Year 1 of the MindPartner™ program and continues throughout. The facts here are pretty alarming. Assuming no medical solution to Alzheimer’s we cannot sustain our current caregiving model. Sweden did a study of the costs associated with Alzheimer’s long term care that was presented at the international AAIC Conference in Copenhagen in 2014 and estimated that by 2020 the costs would exceed the total GDP of the country in that year! All countries globally face similar issues. We cannot wait. We need to work on real alternatives now.
Finally and most importantly, at Gemini our focus is on a single issue — how do we significantly improve the quality of life for someone with Alzheimer’s and other forms of dementia? What does it mean to live a happy and complete life with Alzheimer’s disease?
A person living with Alzheimer’s / Dementia doesn’t change the fact that they are an intelligent, conscious human being who will remain conscious through most of the Alzheimer’s process. Just because they no longer have a voice that we understand or relate to in our everyday verbal, goal-oriented Earth-reality doesn’t mean they have nothing to say. They want and need to communicate. Much of the frustration they experience comes from the fact that we cannot understand their messages. They want and need to deal effectively with the transition from a normal, active life with friends and family to a life where they are less part of Earth-reality and dependent on a personal world that is difficult for others to share.
We have much to offer here. A positive approach can help. The tools that Gemini MindPartner™ offers can help. A different way of thinking about the Alzheimer’s world can help.