Early Onset Alzheimers: A Family In Crisis

By Carol D. O’Dell

At first, Irene* kept forgetting her cat Waldo’s name. She didn’t think too much about it, chalked it up to menopause. Then she forgot how to get home from the grocery store and drove around for nearly three hours before a policeman stopped her—for driving too slow. She didn’t mention the incident to either of her two daughters until something about the police ride home and the tow truck accidentally slipped out in conversation.

Irene visited her family physician who referred her to a neurologist. She was diagnosed with early onset Alzheimer’s disease at the age of 52. Her family was devastated. At first, neither she nor her two daughters talked about it. She was given Aricept, a common Alzheimer’s drug and took her daily dose even though she said she felt dizzy and complained of nausea. She seemed more clear-headed and her daughters welcomed the slight improvement. They made plans to change their mother’s living arrangements since neither of them lived nearby. They worried about her cooking meals or attempting household chores. Both daughters agreed to care for mom six months out of the year.

Divorced, Irene then began taking turns living with her two daughters—one on the east coast, the other the west. Adjusting to not being the woman of the house wasn’t easy. Depression loomed. Each daughter found an adult day care for when mom stayed with them—to give her something to do during the day. Her daughters continued to work and share the responsibility of “mom.” They felt their mom was too young to enter a full-time care facility, and they wanted to make the most of time they had—taking vacations, and finishing scrapbooks and just being together every chance they could. They got “the button” as Irene called it, in case she fell or needed immediate care. They learned all they could about home care for Alzheimer’s.
Home Treatment in Early Stages from OurAlzheimer’s.com at www.healthcentral.com
Telling the Patient. Often doctors will not tell patients that they have Alzheimer's. This is a family decision. If a patient expresses a need to know the truth, it should be disclosed. Both the caregiver and the patient can then begin to address issues that can be controlled, such as access to support groups and drug research.
Mood and Emotional Behavior. Patients display abrupt mood swings and many become aggressive and angry. Some of this erratic behavior is caused by chemical changes in the brain. But it may also be due to the experience of losing knowledge and understanding of one's surroundings, causing fear and frustration that patients can no longer express verbally.
The following recommendations for caregivers may help soothe patients and avoid agitation:
• Keep environmental distractions and noise at a minimum if possible. (Even normal noises, such as people talking outside a room, may seem threatening and trigger agitation or aggression.)
• Speak clearly. Most experts recommend speaking slowly to a patient with Alzheimer's disease, but some caregivers report that patients respond better to clear, quickly spoken, short sentences that they can more easily remember.
• Use a combination of facial expression, voice tones, and words for communicating emotions. (One study suggested that patients may have difficulty in recognizing the meaning of facial expressions, particularly those signaling sadness, surprise, and disgust.)
• Limit choices (such as clothing selection).
• Offer diversions, such as a snack or car ride, if the patient starts shouting or exhibiting other disruptive behavior.
• Simply touching and talking may also help.
• Maintain as natural an attitude as possible. Patients with Alzheimer's disease can be highly sensitive to the caregiver's underlying emotions and react negatively to patronization or signals of anger and frustration.
• Showing movies or videos of family members and events from the patient's past may be comforting.

Irene enjoyed adult day-care for a time but as she began to wander, her daughters had to hire home health care. It was difficult to find a good match. Irene grew combative. Each daughter worried not only mom’s quality of care, but of the rising cost as well. Irene did not have long term health care insurance.
Irene is now 62 and in a memory loss unit. Her dementia is advancing quickly.
Her medication has been changed. She’s now taking Nameda.

Irene’s west coast daughter decided to move to the east coast to oversee her mother’s care. She is now divorced and lives with her sister. She has two children, ages 5 and 9. She no longer takes the grandchildren to see their grandmother, hoping they’ll remember the good times. Irene is angry and belligerent some days, and others, she seems to have adjusted. The two daughters are grateful they have each other—for shared responsibility and emotional support.

Common Alzheimer’s Medications:

The first four drugs belong to a group of drugs called Cholinesterase Inhibitors. They delay the break down of acetylcholine in the brain. Acetylcholine helps communication between the nerve cells and is important for memory.
Aricept, Exelon and Razadyne are most effective in the early stages of Alzheimer’s disease. This group of prescription drugs has been shown to have some modest effect in slowing the degeneration of cognitive symptoms. The drugs can also reduce the behavioral problems that are exhibited in people with Alzheimer’s. When the drugs work well they can significantly improve people’s quality of life. Benefits, if they occur, should happen within a few weeks.
Namenda (memantine)
Nameda is a N-methylD-aspartate (MNDA) antagonist It acts on another neurotransmitter (transmitter of nerve messages) called glutamate. The drug shields the brain from glutamate which contributes to the death of brain cells in people with Alzheimer’s disease.
Effective in moderate to severe forms of Alzheimer’s disease, improving the day to day life of the person with Alzheimer’s disease, and by implication the life of the care givers. Improvements should be seen within a few weeks.
Alzheimer’s Medication information is from www.aboutAlzheimer’s.com
It’s been ten years since Irene’s original diagnosis of early onset Alzheimer’s disease. Irene doesn’t recognize her daughters anymore, but they check on her every day either by phone call or visit. She’s losing her ability to speak, which is sometimes just gibberish. She’s still mobile and is often restless and agitated. She walks aimlessly in the halls, common Alzheimer’s occurrence. Both sisters attend a caregiver’s support group to cope with their guilt, stress, and sorrow. They worry. Is early onset Alzheimer’s genetic? We’ll discuss this issue in a follow-up article.

Sidebar:
WARNING SIGNS OF ALZHEIMER'S
Memory loss
Difficulty performing familiar tasks
Problems with language
Disorientation to time and place
Poor or decreased judgment
Problems with abstract thinking
Misplacing things
Changes in mood or behavior
Changes in personality
Loss of initiative

*Irene is a fictitious name, but this story is based on a real family’s struggle with Alzheimer’s.