As we celebrate more birthdays, and the number of people living to be ninety or even hundred is no longer uncommon, behind the celebration lurks the painful reminder that longevity comes at a price. The golden years may not be so golden when we realize that brain cells can deteriorate with advancing age and rob people of a good deal of their lives by wiping out much of the past, and disabling the capacity to function in the present or plan the future.
The culprit behind this tragic deterioration is the Alzheimer’s Disease (AD). In her blog in the Times Union, Elizabeth Floyd calls AD “the long goodbye.” It is a form of dementia, resulting in loss of memory and cognitive functions, and in worsening conditions, behavioral changes and an inability to perform even simple daily tasks.
The connection between neurological damage in the brain and clinical dementia was first presented by a German doctor named Alois Alzheimer at a medical conference in 1906. Hence the eponymous name of the disease.
Touched by Alzheimer’s
When I met one of my friends here in Schenectady after a long time at a social function, I noticed a significant absence. Her husband, a prominent cardiologist, and a pillar of the Indian society, a sort of Renaissance man whose hospitality I had enjoyed often whenever I visited Schenectady, was not with her. I remembered attending many birthday parties and wedding anniversary celebrations hosted by this couple just a few years back. Answering the puzzled look on my face, my friend said with sadness: “Fifty plus years of our life together have been wiped out completely. He does not remember me or his children.” He lives now in a facility for AD, away from his loved ones, since he needs professional care. Love is not enough.
Another friend who regularly sat with me at meal times at Ingersoll Place, an Assisted Living facility in Niskayuna, New York, where I have been living for the past 18 months, has now gone to the Memory Room, a space allotted for residents with memory problems, and separate from where regular residents live. There are 11 residents that currently live in the Memory Room. Roughly half of them have dementia, and the other half AD. Once a vibrant person, who sat at my table along with her husband, today she is forgetful, and cannot perform even simple daily tasks like bathing and dressing herself. She seems to go in and out of her present life and cannot connect with her past.
While medicine has wrought miracles in curing diseases that seemed incurable in the past, and prolonged our lives, the price that some of us pay for longevity is loss of memory and weakening of motor and cognitive functions that can result in AD. The essence of a person is taken away with this disease. Their life experiences, which make up their personhood, vanish through the decline of brain functioning, and who they were remains only in memory for those who love them, like photographs in sepia.
The best that can be done for Alzheimer’s patients when they are unable to carry out daily tasks like bathing, dressing, and walking which ends up in frequent falls, is to have one on one caregivers. When Alzheimer’s patients show behavioral changes like agitation, hallucinations, paranoid distrust, depression and wandering, it becomes necessary to have structured living areas where psycho-social services can be provided.
Over 8 million people have AD, and it is expected that by 2050, there will be a million new cases every year. AD strikes about ten percent of people in the United States aged 65 and up. Fifty percent of people over 85 and up have this old-age scourge. Healthcare costs for dementia and AD in 2010 were over $172 billion dollars, three times higher than money spent for the healthcare of other seniors over 65. Businesses lose over 58 billion dollars a year because some of their employees are caregivers to loved ones with dementia/AD and need time off.
Why do these dreadful diseases happen? The word “dementia” literally means “the loss of the ability to think.” Scientists have made significant progress in understanding the possible causes of Alzheimer’s but have found no cure. The brain is a complex structure which has over a hundred billion nerve cells or neurons. Connecting these neurons and helping them communicate with each other are synapses that send out electrical and chemical signals to the body for motor as well as cognitive activities. In its pathological state, the brain is hindered from carrying out its important function of sending out these signals because of the formation of plaques and the tangles of the neurons. A protein called “beta amyloid” causes the buildup of plaques in the spaces between the neurons. The plaques prevent communication between the neurons. The protein “tau,” which normally promotes communication in the brain cells, breaks them up into tangles in its pathological state, and blocks effective communication between the brain cells. This brain disorder causes Alzheimer’s.
The causes of AD can be genetic as well as non-genetic. Some non-genetic factors include head injuries in childhood, lower levels of formal education, and lower socio-economic status. Though not proven conclusively, environment and childhood experiences can be a risk factor in getting this mind-robbing disease.
The South Asian Diet
1n 2006, a study titled, “Curry Consumption and Cognitive Function in the Elderly” conducted by Ng TP, Chiam PC, Lee T, Chua HC, Lim L, Kua EH indicated that those “who occasionally ate curry (less than once a month) and often (more than once a month) performed better on a standard test (MMSE) of cognitive function than those who ate curry never or rarely.”
Shrikant Mishra and Palanivelu published a paper in the Annals of Indian Academy of Neurology on the effect of curcumin (turmeric) on Alzheimer’s disease. The paper stated that there is a lower incidence and prevalence of AD in India. “The prevalence of AD among adults aged 70-79 years in India is 4.4 times less than that of adults aged 70-79 years in the United States.” Turmeric, an essential ingredient of the Indian diet and used in curry powder, is proven to have anti-oxidant and anti-inflammatory properties that can improve cognitive functions in patients with AD. The beneficial effects of turmeric is attributed to the fact that elderly villagers in India have one of the lowerst incidences of AD.
Symptoms of AD
• Memory loss that may be so severe as to disrupt daily life. While one may occasionally forget things as one grows older but remember them later, it is a different matter when one forgets important dates, events, recently learned information, or asks the same questions over and over, and needs memory aids like electronic devices or relying on family members for memory lapses.
• Difficulty in following through a plan of work and completing it.
• Concentration becomes a problem. So does remembering familiar roads or the rules of a game.
• Understanding anything that is not happening immediately. Alzheimer’s patients may forget where they are or how they got there.
• Difficulty reading, judging distance, distinguishing color and contrast, whichcould impair driving ability.
• Trouble with language. They may struggle with the choice of the right words.
• A tendency to hide things and being unable to retrace their steps to find them. AD patients mistrust people and often accuse them of stealing.
• Alzheimer’s causes changes in judgment or decision making.
• People with AD tend to withdraw from social activities, hobbies, work projects or sports. In short, anything involving working with other people.
• Having mood swings that lead to confusion, anxiety, distrust, and depression.
Although drugs approved by the U.S. Food and Drug Administration can minimize the effects of AD, there is as yet no permanent cure for a disease that ironically deprives us of spending our well-earned last years with full control of our cognitive faculties. However, there is still a glimmer of hope that a cure can be found in the foreseeable future since significant research is being conducted at places like the Rockefeller University and the Fisher Center in New York.
At Ingersoll Place, some AD residents are encouraged to listen to music or play the piano and some engage in memory exercises like trivia games to enhance the cognitive memory links. Patients are mainstreamed into activities like social hours, chair exercises, and religious services like communions. There are some cases where both spouses live under the same roof, the “normal” person in the Assisted Living area and the Alzheimer’s person in the Memory Room. The “normal” spouse often takes the spouse who has mental problems for outings, or both spouses attend social activities together. All this gives the Alzheimer’s person a chance to interact with others although they still have memory deficit.
I would like to share the experience of a family at Ingersoll who shall remain anonymous and the Alzheimer’s patient referred to as X. It is an example of what a family experiences when a loved one has AD. When the family noticed that X had some severe memory problems and behavioral changes, they had her evaluated by their family doctor as well as by Dr. Zimmerman, an expert on Alzheimer’s at the Albany Medical Center. Dr. Zimmerman noticed her gait as well as other behavioral changes and found that she had AD and needed special care. X is now a resident at the Ingersoll Memory Room where specialized caregivers look after her daily needs like toileting, proper meals, and accompanying her to the General Activities Room where she participates in chair exercise and social events. X seems quite happy and even feels safe in the Memory Room as she has become accustomed to the new reality of life in the Ingersoll Memory Room.
It is not an easy task for either the victims of brain disorder or their caregivers to cope with their situation day in and day out. Support systems may help somewhat. We can only hope, in these days of cutbacks in healthcare, that more funds will be allocated for continued research on AD, a scourge that robs our seniors of their most precious faculty. The greying of America should not be treated with cold indifference. n
Lakshmi Mani taught at the Rochester Institute of Technology for 20 years. She writes on American and Indian-American literature, and is a National Endowment for the Humanities fellow.
Many thanks to Dawn Brasch, Michelle Wyman, Nikki Dale, and Maria Anthony for helping me with valuable research material.