ALZHEIMER'S and other dementia's . . . .There are currently more than five million people with Alzheimer's disease in the United States, including about 88,000 in MN who are over age 64. These numbers are expected to skyrocket to as many as 16 million by mid-century. The potential for earlier diagnosis and the development of better treatment may significantly change the experience of Alzheimer's for millions of people. Today, the care and support for people impacted by dementia is mission critical and the urgency toward methods of treatment, prevention, or cure for all types of dementia is a shared vision of the Alzheimer's Association and the Mayo Clinic, Rochester, MN.
This author (your parish nurse Dorothy Ellerbroek) attended the premier Meeting of the Minds dementia conference on March 14, 2015 at RiverCentre, St Paul MN. This was the eighth year in succession that I have attended this conference, in order to independently increase my knowledge of this disease; it is true that dementia comes into the nurse practice in all settings of health care, including parish nursing. I also have personal experience with dementia, because my Mom died of Alzheimer’s disease.
Each year the MN-ND chapter of the Alzheimer's Association partners with the Mayo Clinic in sponsoring this conference, heralded as the best in the nation for healthcare professionals, families and people affected by the disease, and clinical researchers. The conference day is always filled with information from the leading experts in dementia, with cutting-edge updates on latest research, status of treatments, and an array of vendors offering supportive information of resources for those living with the disease—as a person with dementia and/or their family and primary caregivers.
First, some basics of dementia. There are various types of dementia, one of which is Alzheimer's disease. Some dementia is caused by vascular changes in the brain that affect cognition; some individuals experience “small strokes,” aka TIAs (trans-ischemic attacks) which may contribute to memory loss. There has been media and medical attention to traumatic brain injury secondary to head injury and concussion resulting in cognitive compromise. There are subtle variations in symptons of each type of dementia, but overall the patient experiences significant loss of memory, the severity of which increases over time.
The keynote speaker for the conference this year was Michael W. Weiner, MD, professor of radiology, medicine, psychiatry, and neurology, at University of California San Francisco, at the SFMAMC Center for imaging of neurodegenerative diseases. He has been doing research for over forty-five years and is the principal investigator of the Alzheimer's Disease Neuroimaging Initiative, a ten-year national longitudinal study of over 1500 subjects which is aimed at validating biomarkders for Alzheimer's disease. Dr Weiner has also launched the www.BrainHealthRegistry.org This is an internet based registry with the overall goal of accelerating development of effective treatments for brain diseases. The website registry recruits, screens and monitors brain function on thousands of subjects all over the USA. The goal of this research is to participate in the development of effective treatments and methods for early detection of Alzheimer's disease and other brain disorders.
If I may digress for a moment to put this into historical medical and social context. It is known that dementia's are not contagious, but the prevalence of dementia in all parts of the world qualifies this disease to be considered of epidemic proportion. I remember from my childhood the epidemic of tuberculosis for which there was no cure; and the treatment involved isolation from others, with much rest, fresh air, sunshine, and nutritious food; there were active, aggressive Mantoux testing of all school children which nearly-eradicated the disease in the U.S. The polio epidemics in the early 1950s caused panic among parents as their young children were stricken. Many died, many spent months in an iron lung to support respiration until the disease was defeated-- again by vaccines. Polio is a virus which strikes its victims with great speed of accelerating neurological symptoms paralyzing muscles, including the muscles of respiration/breathing. Many children at that time were expected to endure the childhood diseases of measles, mumps, and whooping cough. Some bear permanent side effects into older adulthood from these common diseases of children in the 1940s and 1950s. Prior to that many many children succumbed to scarlet fever; those who survived often suffered permanent heart valve disease throughout their adult lives. In the case of scarlet fever, it was the development of antibiotics that brought scarlet fever under control. We are not accustomed to having children die of these diseases anymore Vaccines have contributed to the increase in life expectancy in today's world.
There are parallels between those conditions and dementia. Alzheimer's disease at this time is a similar scourge, as the above-mentioned diseases were in generations past. Medical research on brain diseases has increased in the past decade, and there is hope. Alzheimer's treatments are not yet significantly effective; there is no cure as of this writing; there is no definite diagnostic test yet; and there is yet to be a prevention. Alzheimer's has become the epidemic of this century, and there continues to be a stigma associated with dementia.
This is the first of at least three blog entries about Alzheimer's disease. The goal and intention is to bring the discussion into the open, to counter the stigma of dementia. In general terms, these successive blog entries will discus some research and clinical contributes that bring improved diagnosis and treatment to the current and following generations of elders and not-so-elders; as well as treatment and lifestyle changes and support that can help all of us understand and cope with this disease.
In the meantime, the parish nurse has many resources about dementia, how it may be treated, what may be done to postpone the onset, and support for families who are experiencing Alzheimer's disease. If someone you know would like to participate in a monthly or even weekly support group for families coping with one experiencing dementia, please let Dorothy know at ext. 145 at Good Shepherd, or email firstname.lastname@example.org; We have had some very successful support groups in the past; it's not necessary to hide this disease, or isolate the individual who struggles with memory loss. Let us help one another to go beyond the stigma.