In 1983, President Ronald Reagan designated November as National Alzheimer’s Awareness month. In those years, less than 2 million people were diagnosed with Alzheimer’s. In 2018, almost 6 million people have been diagnosed. Most of those persons are over the age of 65; however, nearly 200,000 are under that age. Today, Alzheimer’s disease is the 6th leading cause of death in the United States. (Alzheimer’s Association, 2018)
Alzheimer’s and Its Impact: “Difficult to Understand and Rarely Easy”
To continue our support of providing information on key healthcare issues, C&A brings you some information and personal experience related to acknowledging the ongoing efforts to defeat Alzheimer’s Disease in support of Alzheimer’s Awareness Month in November.
Alzheimer’s is the most common cause of dementia, a general term for memory loss and other cognitive abilities serious enough to interfere with daily life, accounting for 60-80% of dementia cases. Symptoms can mimic those of many other diseases, and the condition cannot be definitively diagnosed with any single lab test, scan or exam. Instead, doctors generally rely on evaluation of symptoms of the disease, and are increasingly using imaging tests, particularly in research. A progressive disease, where dementia symptoms gradually worsen over a number of years, in its early stages, memory loss is mild, but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment.
Approximately 200,000 Americans under the age of 65 have younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Alzheimer’s disease is ruthless and for the 5.7 million Americans living with the condition, coping with the loss of cognitive functioning is a daily uphill battle. The disease is the sixth leading cause of death in the United States and those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years, depending on age and other health conditions, with a current average life expectancy of 7 years after diagnosis.
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks at home, at work or at leisure
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood and personality
Research and Treatment Direction
The history of research into treatments for Alzheimer’s is filled with setbacks. Between 1998 and 2017, 146 candidate medicines were unsuccessful in clinical trials for Alzheimer’s. In the same timeframe, just four received U.S. Food and Drug Administration approval. Moreover, these approved medicines treat only symptoms and are unable to slow the disease’s progression. Symptoms can mimic those of many other diseases, and the condition cannot be definitively diagnosed with any single lab test, scan or exam. Instead, doctors generally rely on evaluation of symptoms of the disease, and are increasingly using imaging tests, particularly in research.
In the last decade, emerging science has helped Alzheimer’s researchers unravel some of the major complexities of the disease. The more scientists learn, the better they are at developing new treatments aimed at slowing, and even preventing, Alzheimer’s entirely. Today, with nearly 100 potential medicines in clinical trials, researchers are more optimistic than ever that a cure will be found well within our lifetime. A top priority for biopharmaceutical researchers dedicated to discovering new treatments and cures, current medicines that treat the disease’s cognitive symptoms are just the beginning. To conquer Alzheimer’s, researchers are working to identify and focus on treatments that may ultimately inhibit or halt disease progression.
Personal Reflection from a Caregiver
My grandmother had this dreaded Alzheimer’s disease in my teens and early adulthood. After going through that struggle with her, my mom always hoped that she wouldn’t become a victim of the disease herself. She took excellent care of herself, loved to read and learn, worked as full-time mom for 20 years, working in the Philippines, where she and dad served as missionaries and later in Saudi Arabia as a hospital librarian and after their move back to the US, worked as a media specialist at a community college- a pretty good life and then in 2000 it began.
The warning signs noted above, finding notes, reminders of directions, names on the back of pictures became all too familiar for my dad, sister and brother and me. She had had the foresight to make a Living Will and HCPOA, started on Namenda and Aricept and continued working for a time but eventually had to retire. A retirement facility was next where they hoped to have the necessary support. My father became her primary caregiver, dealing with the daily battles with bathing, dressing, eating and taking medications. They walked for miles every day through the hallways of the retirement home. Having Alzheimer’s doesn’t make you less of a person and the patient has the right to know the truth, however, the reality of the situation became overwhelming for my mom. She cried for hours every day when she realized that she was forgetting. My father and her physicians made the decision at that point to stop her medications. It was heartbreaking to witness the decline of a once vibrant, intelligent, detail oriented, loving person. She died in 2005, the day before their 54th wedding anniversary.
Caregivers go through a variety of emotions: frustration, anger and guilt for wishing that things were the way they used to be. After all of these years my dad struggles with anger and doesn’t believe in a God that would let this happen to one of “His children”. My mom encouraged my siblings and myself to find an occupation that would be fulfilling. I became a nurse, and will always remember my mom as an exceptional, loving woman who taught me so much about caring for others…Patricia Wilcox Piepoli, BSN, RN, RNC
Caregivers are the Lifeline
The first step is to understand that the disease causes changes in communication skills. The second step is to try some tips that may make communication easier:
- Make eye contact and call the person by name.
- Be aware of your tone, how loud your voice is, how you look at the person, and your body language.
- Encourage a two-way conversation for as long as possible.
- Use other methods besides speaking, such as gentle touching.
- Try distracting the person if communication creates problems.
- Show a warm, loving, matter-of-fact manner.
- Hold the person’s hand while you talk.
- Be open to the person’s concerns, even if he or she is hard to understand.
- Let him or her make some decisions and stay involved.
- Be patient with angry outbursts. Remember, it’s the illness “talking.”
- Offer simple, step-by-step instructions.
- Repeat instructions and allow more time for a response. Try not to interrupt.
- Don’t talk about the person as if he or she isn’t there.
In closing, Alzheimer’s disease is being diagnosed at earlier stages, meaning people are more aware of the disease that is affecting their memory. Take time to listen, be sensitive, be in the moment as you support your loved one and remember to always take time for yourself as you battle this dreaded disease with your loved one. Hopefully, this information strikes a nerve or emboldens you if you are a caregiver or a person experiencing the impact of Alzheimer’s. For more information on Alzheimer’s, treatment, research and caregiving, see the resources attached below.