I am alarmed to hear of the number of Alzheimer’s clients that are projected in the next decade and thereafter. Even more alarmed when I see the complete disregard our current long term care system has for those afflicted with the disease. It is almost like we want to keep this as a secret, which does not help very much when advocating for change.
In 1995 the State of Florida was putting together the assisted living waiver and establishing who would have priority for this new funding. My thought immediately was – those who are suffering with Alzheimer’s in the hope that it would incentivize assisted living providers to take care of them. The provision was added to the waiver eligibility requirements but it did not move those private providers to open their doors. One of their reasons was that it costs more to care for an Alzheimer’s client as they require more staff to avoid elopement. Florida is one of a dozen states that pays a fixed rate for the care of an individual in an assisted living facility no matter how much service they require. This leads to a lot of what we call “cherry picking” and who in their right mind will pick the Alzheimer’s clients.
But cost is not the only reason. In a study conducted in 1996 it was found that half of the states had admission and discharge criteria that prevented the admission and retention of people with cognitive impairments (Alzheimer’s). Later studies continued to reveal a reluctance of assisted living providers to admit/retain residents with the type of behavioral symptoms brought about by the disease. The Alzheimer’s Association supports the ability of residents to age in place, however, the fact remains that the few that do offer dementia specific units to Alzheimer’s clients do so at the detriment of the residents. There are cases of residents being neglected and ostracized and care needs are very high. This is a reason why most of the nursing home residents are in fact Alzheimer’s clients; individuals who do not need medical attention but basic supervision. However, they end up there because no one else would take them. According to a 2006 study, over 40% of discharges from assisted living facilities to nursing homes were because of cognitive impairments.
How dementia friendly are those brave assisted living facilities that cater to Alzheimer’s clients? Universally all dementia units use methods of exit control and clients are served in separate areas of the buildings – not to be seen or heard. At the first facility we opened here in Miami we welcomed Alzheimer’s clients and half of the population was in fact afflicted with the disease. Morally opposed to any type of segregation, our dementia clients were interspersed through the eight (8) floor facility. They ate their meals with everyone else and partook of the activities with the rest of the community. There were complaints from those who were able and fit, particularly during dinner hours. But, the complaints did not persist when they were asked if they too would like to be locked up if ever afflicted with the disease. After one year of this experiment, Florida International University performed an evaluation of our program and found, to everyone’s surprise, that our clients’ cognitive health had drastically improved because they were allowed to be part of the entire community. What a novel idea!