ALL ABOUT ALZHEIMER'S: Dementia or Alzheimer's? By Betty Weiss
You finally got past the denial and took your loved one for a diagnosis. Was it 'dementia,' 'possible Alzheimer's,' 'dementia of the Alzheimer's type,' or just 'Alzheimer's'? The possibilities are endless.
Dementia is the key word here. Dementia is neither a disease nor an illness. It is a term describing symptoms that may include repeating things, language problems, getting lost in familiar places, inability to follow directions, disorientation about time, people and place; neglecting personal safety, hygiene, and nutrition; unable to solve simple tasks, trouble making change, mood swings, agitation, etc. It was these odd behaviors--dementia--that ultimately sent you to the doctor. You may have thought it was Alzheimer's, and you could be right. Alzheimer's is the major cause of dementia, but it might be something else. Dementia can be caused by Parkinson's, Huntington's, kidney, liver, heart or lung disease; strokes, tumors, reactions to meds, infections, diminished oxygen, excessive alcohol or drug use, head injury, nutritional deficiencies, fluid in the brain, etc. Because some dementias are reversible, it is critical to find the cause. Dementia is not part of normal aging.
Alzheimer's, however, is definitely a disease. Besides tangles and plaques, the Alzheimer's markers found in the brain at autopsy, there are other brain changes. Nerve cells vital to mental abilities die. Connections between cells fail. Lower levels of some brain chemistry may impair language, thought, and memory. Our brains also control numerous body functions we are unaware of--circulation, breathing, blinking, swallowing saliva, digestion, heartbeats, etc. Eventually, those things are also affected. Alzheimer's is a terminal disease. When my husband's brain could no longer control his automatic breathing, he was given oxygen to insure a peaceful passing. Scientists do not know what causes Alzheimer's. A few meds may delay its progress in some people, sometimes, but there is no cure and no way to halt its ordained destruction. It is not a part of normal aging.
A diagnosis of Alzheimer's is sad and frightening. Usually it is very slow moving. Lucid moments come and go all along the way; so many years of normal, happy living often lie ahead. On average, patients live about seven years after diagnosis, but it is not uncommon to live another twenty. My husband lived for ten, but I know he had it many years before going to the doctor.
Something important to understand and remember. Because people with dementia and Alzheimer's may have many lucid moments, because they look the same and often act normally, those around them tend to think there is nothing wrong, they can understand and remember when they want to. They're putting on an act, looking for attention. If Dad was able to lock the gate yesterday, he can certainly do it today! But think of memory as a sand castle at the ocean's edge, perfectly fine until the tide changes. A little lap of water nibbles away at the outside edge, no one notices. Later, water comes up at another place, takes a bit more but leaves most of the castle still intact. Parts gone with the receding tide are lost forever and you don't know exactly which ones they are. As the castle slowly disappears, so does the ability to understand. So, yelling at those with dementia, insisting they remember, explaining this and explaining that, only bewilders them and frustrates you. As cells die, their reality changes; it is no longer the same as yours. It takes some doing, but learn to deal with whatever outrageous things they say; they truly believe what they believe. You cannot restore functions that no longer exist, but you can keep your home as calm as possible, move into their reality, understand what it's like for them, give lots of love, and make things easier. No small challenge.
If you feel uncomfortable with your doctor, don't hesitate to find another. Most doctors are never taught much about dementia. A neurologist or geriatrician is a good place to start. You have a long road ahead and you'll need all the experience, expertise and support that a knowledgeable physician can provide. If there is a large university or training hospital nearby, find out if they have an Alzheimer's or Memory Clinic.
Betty Weiss is the author of the best selling Alzheimer's Surgery: An Intimate Portrait, and When The Doctor Says, "Alzheimer's:" Your Caregiver's Guide to Alzheimer's & Dementia. She does not give medical advice. www.geocities.com/caregiving4alz