Some health-care professionals have divided dementia into as many as ten stages. Personally, I find the three-stage division to be more practical and understandable for caregivers. While each stage has symptoms and difficulties that overlap to some degree, I have consistently noted the following:
Stage One is hardest for the patient himself.
Stage Two is hardest for the caregiver.
Stage Three is hardest for the primary decision maker.
There is no “typical” case of dementia; everyone experiences it in his own way. One may wander, another may not; symptoms from Stage One can appear during Stage Two, and vice versa. The following are short lists of common behaviors marking the three stages of Alzheimer’s and related dementias. While it may be heartbreaking to read these lists, it is important for the family and caregiver to know what to expect in the years to come and to be prepared with a plan for all the “what ifs.”
Stage One: Duration two to four years from onset of symptoms.
The hallmark of early dementia is persistent short-term memory loss.
He may be able to mask lapses in memory.
Your parent is usually still social and alert, although he may know “something” isn’t right.
He will have poor concentration and difficulty retaining new information.
He may forget appointments and names.
He may put things away in the wrong places or leave the stove on.
He may forget to pay a bill or pay it twice; he is susceptible to money scams.
He may begin to withdraw from favorite activities.
He may get lost while driving.
He will begin to repeat stories or questions.
He may have problems naming common objects.
He may display moodiness or slight hostility.
Personal hygiene may slip a notch.
He may refuse to allow help in the house.
He may have difficulty calculating numbers, or finding specific words.
He may decide he does not need medication.
He may be anxious for no apparent reason.
He may be easily upset or depressed, often in response to the changes taking place.
He may exhibit anger at being confronted with any of the above.
Stage Two: Duration two to ten years—the longest stage.
Your parent will experience increasing memory loss and shorter attention span.
He will experience increasingly impaired judgment.
He will repeat stories and questions in a short span of time.
Minor dents to his automobile may progress to more serious accidents.
His appearance may be markedly unkempt.
He may get lost in familiar places.
He will have difficulty following more than one direction at a time.
His coordination, increasingly poor, will create a risk for falls and accidents.
His appetite may diminish.
He will require assistance with bathing, dressing, and possibly eating.
He may have increasing fear or suspicion of others; he may accuse a spouse of infidelity.
He may start to wander or pace.
He may lose items and claim they are stolen.
He may see or hear things that are not there.
He may become uncooperative, hostile, or aggressive.
His sleep may become disturbed; he may nap at odd hours and wander at night.
He may repeat meaningless tasks with greater frequency.
He may not recognize friends and family he doesn’t see regularly.
He may begin to experience urinary incontinence.
He may spend more time in bed.
He may become restless in late afternoon or evening.
As dementia progresses, long-term memory will begin to fail.
Stage Three: Duration one to three years. Total Dependence.
He will eventually experience complete disorientation as to time and place.
He may not recognize relatives and friends (or possibly himself in the mirror).
He will need total twenty-four-hour physical care.
He may lose weight even with a good appetite.
He may have difficulty swallowing or be unable to swallow.
He will need to be fed or he may stop eating.
He will become totally incontinent.
He will not be able to get out of a bed or chair unassisted.
He will become noncommunicative, speaking in unrelated sentences or not speaking at all.
At the end of Stage Three, he will be bedridden and asleep much of the time.
He will become susceptible to malnutrition, infection, and pneumonia.
By this point, difficult end-of-life decisions should have been made by either a spouse, an agent having durable power of attorney (see Chapter 24), or the mutual agreement of the patient’s children. For example:
Ultimately fatal, Alzheimer’s and related dementias may last anywhere from five to seventeen years. Considering the wide range of symptoms, it is no wonder caregivers find themselves overwhelmed. A standard plan of care will not do for this disease; you must remain flexible and shift with your parent’s changing needs.
How Much Should You Tell Your Parent? Camille, age one hundred, was well into stage two dementia. She still had good social skills, but often could not recall what happened five minutes ago as her memory came and went. Her eighty-year-old daughter, Sandy, had just suffered a stroke and did not want her mother told about it. However, Camille’s nephew, a psychiatrist, felt it was the right thing to tell her the truth about her daughter. On hearing the news, Camille cried all afternoon and night, not eating dinner or breakfast. By the next morning, she was too weak to get out of bed. Strangely, by noon, Camille had forgotten about Sandy’s stroke. But later in the afternoon, she remembered again, and for the rest of the day, cried so hard her doctor ordered an antianxiety medication. Every time she remembered, Camille grieved as though hearing the information for the first time.
Should You Tell Your Parent She Has Alzheimer’s? Current medical literature supports the belief that every person has the right to be made aware of the diagnosis. If your parent is in early stage one Alzheimer’s, she should definitely be told. Assured she is not “going crazy,” she can participate in future choices by reviewing her will, her power of attorney, and her advance directives. Additionally, she can be made aware that there are medications available and research programs she might participate in. By sharing with her family how she wishes to be cared for and her preferences concerning end-of-life issues, she will have more control over her current and future life. Further, you can explain why driving or cooking would be dangerous. For the rest of the family, the open discussion allows a better understanding of the changes that are taking place and may deflect denial, blame, or misplaced anger.
However, suppose your parent is at a point where short-term memory comes and goes. I believe that to burden your parent with the news that she has Alzheimer’s when she has lost the ability to process the information serves no purpose. In fact, telling your parent sad news of any kind at this stage may leave her in a painful limbo. So before you share this kind of information with your parent, think: Will she benefit from knowing? Or are you just telling her because you think it is the correct thing to do? Sometimes we have a responsibility to tell our parents; sometimes we have a responsibility not to tell.