"The doctor told us I had Alzheimer's disease. I remember that my heart was pounding and it was difficult to breathe. We left his office and sat in the waiting room, thinking that someone would come to tell us what to do next. But no one came."
I heard these words at an Alzheimer's Association Early Stage Conference. The speaker was a medical professional who had raised three children. Now her life and that of her husband and future caregiver were in pieces and neither of them knew how to put their lives back together.
This anecdote illustrates an oft-overlooked aspect of Alzheimer's disease: The caregiver. A diagnosis of AD affects more than the patient. Ultimately, persistent memory and functional decline, disturbed sleep patterns and the slow slipping away of the person and personality they love, can lead to caregiver anger, exhaustion and grief. An estimated 50 percent of caregivers are clinically depressed and vulnerable to serious health problems. Helping the caregiver take care of him- or herself is one of the most important things we as professionals can do to help families cope with AD.
As a social worker, I often meet with patients and families at the time of diagnosis. Together, we explore ways families can maximize their strengths and minimize the negative consequences of AD on the family.
The impact of a diagnosis of a chronic, degenerative brain disease, treatable by medications that can slow or moderate symptoms but cannot cure, varies enormously, but it is always life altering. A support group or individual counseling can be helpful at this stage, and we offer a caregiver group at our center. I also introduce the need for planning, including choosing a health proxy, executing a durable power of attorney, and seeking advice from an elder law attorney.
For the person with AD, encouraging maximum independence and interaction within the bounds of safety is the goal. A day program can provide social stimulation. These are things that can help the patient. But it's also critical to understand that in AD other needs must be addressed if families are to cope with this traumatic disease.
Lynn Stiles, M.S., C.S.W., is the social worker for the Lucy G. Moses Center for Memory and Behavioral Disorders, which is staffed by faculty in the Division of Aging and Dementia in the Department of Neurology and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain. In addition to clinical care, the Lucy G. Moses Center provides the opportunity for patients and families to take part in clinical trials, observational studies and genetic studies. For more information or an appointment, call 212-305-6939.
The toll on individuals and families caring for someone diagnosed with Alzheimer's disease is tremendous, both financially and emotionally. Considering that 4.5 million people in the United States are estimated to have AD, the impact of the disease is reaching far beyond the toll on families and individuals; it is having an enormous impact on society as well.
The current and future implications of AD on the public health system are staggering. Although epidemiological studies on the incidence and prevalence rates of the disease differ mostly due to the criteria used to classify an individual as demented all the statistics recognize that the magnitude of AD as a national health problem is steadily increasing. A recent study concluded that 13.2 million individuals in this country will have AD by 2050 unless effective prevention or treatment methods are developed.
Alzheimer's is a costly disease after heart disease and cancer it is one of the most expensive diseases. Seven out of 10 individuals diagnosed with AD live at home, where about 75 percent of care is provided by family and friends. The other 25 percent receive hired in-home health care, provided at an average cost of $12,500, an amount that is mostly out-of-pocket. One might think that keeping family members at home saves this country a significant amount of money, but recent estimates indicate that even with that care, AD costs American businesses about $61 billion a year. Of this figure, about $24.6 billion is due to direct health costs for the patient; the other $36.5 billion is accounted for by caregiver costs, such as lost productivity, absenteeism, and worker replacement. All in all, the national direct and indirect costs of caring for individuals with AD are at least $100 billion.
It is obvious, therefore, why AD has become an urgent research priority. A current research focus is on identifying those at an increased risk or in the early stages of the disease so that preventive treatments can be employed. If the onset of AD can be delayed by even five years, the number of people with the disease could be decreased by half; that is, people would more likely die from old age before contracting AD.
There has been an explosion of knowledge about AD in the past 25 years. For example, four genes associated with AD have been identified and animal models now exist that are valuable in understanding how the disease develops and for testing possible therapies. Numerous prevention trials and trials aimed at slowing the disease's progression are ongoing. The great amount of knowledge gained thus far sets the stage for a more hopeful future.
As a genetic counselor and project coordinator for a multi-center project, the National Institute on Aging Alzheimer's Disease Genetics Initiative, I have seen firsthand the amount of time and energy devoted to AD research by both investigators and families. I have been touched by the dedication and willingness exhibited by families who want to contribute to genetic research. Their attitude is all the more moving to me because they know that they themselves may not benefit directly from the research. Still, they participate with the hope that future generations of their families, as well as other families, will reap the benefits.
Susan LaRusse, M.S., is a certified genetic counselor in the Taub Institute for Research on Alzheimer's Disease and the Aging Brain. For more information about Columbia's genetics studies, contact Vincent Santana at 212-305-2309.