When you think of progress being made on the front of referring Coloradans for education, care and treatment for Alzheimer’s disease and other forms of dementia, you might be reminded of the Clint Eastwood classic, “The Good, the Bad and the Ugly.”
The good news is that the Alzheimer’s Association is actively and aggressively working on behalf of families affected by dementia, providing education and programs – all at no charge to the families – and funding research to find a cure for the disease.
The bad news is that there still is no prevention for Alzheimer’s. No effective treatment. No cure. And the trend line for the disease is alarming: rising 37 percent between now and 2025 to more than 92,000 people living with Alzheimer’s – far more people than seats in the Denver Broncos’ Mile High Stadium.
The ugly news is half of all people with Alzheimer’s and other forms of dementia are never diagnosed. And of those who are, too many are never told they have Alzheimer’s and are never referred to our Association by their physician for the care and support that would make their journey easier to manage.
Why is a diagnosis important? Without it, the individual and his or her family may never understand the cause behind the person’s changing behavior…their declining memory…their inability to complete simple tasks that once were taken for granted.
Without a diagnosis, the person will never get the chance to enroll in important medical trials being conducted across the country to find that elusive cure, and to have the opportunity to try new drugs that are in the experimental stages.
Without a diagnosis, caregivers may never learn of valuable services, such as support groups, programs for persons in early, middle and late stages of the disease; as well as classes that teach skills for better communication with a person with dementia, in addition to legal and financial planning workshops.
So, why are many of those with Alzheimer’s diagnosed but never told? Why aren’t more providers taking advantage of the Rapid Referral program that directs individuals to the Alzheimer’s Association for education on the disease and options that are available?
“Alzheimer’s is a difficult subject matter to address with any individual who is facing that diagnosis,” said Kay Adams, social worker and clinician at the Kaiser Permanente Memory Clinic. “It’s not a short discussion. A primary care physician may not have the time or expertise to talk about it in a supportive way. And if the diagnosis is merely memory loss or cognitive disorder, it isn’t enough to trigger support services. We can’t refer a person to the Alzheimer’s Association for education and support without a proper diagnosis.”
Both Kaiser Permanente and the University of Colorado Hospital’s Outpatient Seniors Clinic are among the medical groups that have been leaders in advocating for greater use of Rapid Referral to get their patients into services provided by the Alzheimer’s Association. It’s a good place to start.
“Our relationship with the Alzheimer’s Association is unique in that once the patient and family agree, the Association reaches out to them and not the other way around,” said Elvin (Tedd) Perry, RN and coordinator for the University of Colorado Seniors Clinic’s Dementia Program. “It is a great introduction to, or continuation of, managing our patients’ care. The point is to support our patients.”
The progress being made by Kaiser Permanente, University of Colorado Seniors Clinic and other medical groups across the state is encouraging as we look to serve all individuals and families dealing with Alzheimer’s and other forms of dementia. Now, our goal is to encourage every provider to see the benefits of making a Rapid Referral and give those people the benefit of the programs and services available to them – all at no charge – that can make such an important difference in their lives.
If you have a question about Alzheimer’s Association services, call the 24/7 Helpline at 800-272-3900. If you are a health care professional, call Theresa Grill, Alzheimer’s Association of Colorado professional education coordinator, at (303) 813-1669, to get the Rapid Referral program in your health system.