By Lisa M. Petsche
Statistics indicate that one in eight Americans over age 65 and almost half of those over 85 have Alzheimer’s disease or a related dementia. Although dementia can affect adults at any time, the risk of getting it increases as one grows older.
Alzheimer’s disease (AD) is the most common form of dementia and involves gradual breakdown of nerve cells in the brain. Affected persons lose the ability to interpret information and to send messages to their body to behave in certain ways. This is not a normal part of aging.
There is no single test to diagnose AD, and in fact only post-mortem examination of the brain is conclusive. When doctors suspect AD, they use a systematic assessment to rule out other possible causes for a patient’s changed behavior, such as infection or depression.
Damage to the brain is irreversible, since there is no known cure at present. However, drugs are available that slow the progression of some symptoms.
Other medications, such as antidepressants and antipsychotics, may be used to treat severe behavioral symptoms.
Treatment approaches for AD also include specific interpersonal strategies as well as modifying the person’s environment to reduce confusion, disorientation and agitation.
Researchers have yet to uncover the cause of AD but believe it’s due to a combination of genetic, environmental and internal factors.
The rate of progression of AD varies, from gradual deterioration over numerous years to a short and dramatic decline. (Technically, people don’t die from AD but from associated complications such as pneumonia.)
Symptoms also vary from one person to the next, and may not be identified as such at the outset, since changes are often subtle or sporadic at first.
Over time, though, changes in the brain result in mental, emotional, behavioral and physical changes. Mental changes include memory loss, especially recent memory; difficulty adjusting to new places and situations; loss of language skills; and disorientation to time and place.
Mood-wise, there may be decreased expression or an inability to control one’s emotions.
Some common behaviors are wandering away from home and becoming lost; constant movement; actions that make little sense to others; repetitious behavior; and altered sleep patterns. Other challenging behaviors may be noise making, hallucinations, paranoia, and verbal or physical aggression. It’s important to emphasize that none of these are within the person’s control.
Physical symptoms include decreased muscle strength, a tendency to stumble and fall, and loss of bladder and bowel control. Eventually all self-care skills are lost.
A diagnosis of AD is devastating for both the affected person and loved ones. A variety of emotions are experienced, including denial, anxiety, fear, anger, resentment, embarrassment and sadness. Depression is common.
Family and friends provide most of the care that people with AD require. Like their loved one, these informal caregivers experience a wide variety of distressing emotions. They are at risk for burnout due to the emotional and physical toll of caregiving.
It is common to feel that no one understands what they and their loved one are going through. Even if friends and relatives have a good understanding of the disease, they may withdraw out of discomfort, fear or a sense of helplessness. Caregivers become further isolated because they can’t leave the person alone and therefore don’t get out much.
At some point caregiving usually becomes too heavy a load. However, caregivers tend to pursue institutional placement only after the recommendation – often urging – of health care professionals or family members. The decision is typically accompanied by guilt and sometimes a feeling failure. Support from others can go a long way to help them – and their loved one – through the transition.
It is often said that AD is even harder on loved ones than it is on the diagnosed person. That’s because eventually the person loses awareness of his situation, while relatives and friends continue to suffer the heartache of witnessing his decline, grieving one lost ability after another.
Where to turn for help?
An excellent resource is the Alzheimer’s Association, a non-profit, charitable organization. More than 200 community-based chapters exist throughout the country. Typical programs and services include a telephone Helpline, support groups, a Safe Return program for those who wander, training for family and professional caregivers, a newsletter and a resource library.
To locate the nearest chapter, call 1-800-272-3900 or go online to www.alz.org/findchapter.asp
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.