Alzheimer’s disease (AD) is a degenerative disease that begins late in life and causes increasingly widespread destruction of brain cells. People in the early stages may be aware of and concerned about changes in their ability to think and remember, although as the disease progresses they will become less aware of and concerned about their functioning. Families often delay getting medical help because they fear that the person with AD will be offended by the confrontation or devastated by the news. However, early diagnosis is helpful to everyone involved. There are many ways that informed family members can make things easier for both the person with AD and their spouse, helping them cope more effectively and interact more rewardingly. There are also new medications that work best in the early stages of the disease.
People with mild to moderately advanced AD are on some level aware of a decrease in their competence to handle the demands of everyday life, and are often quite anxious about it. This is why it is important for the family and the person with the illness to discuss the diagnosis together with a professional. It can be a great relief to have it acknowledged openly that they can no longer make decisions or take care of things, and that the family will be there to help.
Alzheimer’s disease comes on gradually, and early on is easily mistaken for the occasional absent-minded moments that we all experience. Although the rate and order of progression of symptoms varies, problems with short term memory and concentration are noticed first, then reasoning, then mood and behavior, then and finally, the ability to recognize things visually. Language is relatively well preserved until late in the illness, which is why people with AD can “talk a good game” and people outside the family may not notice anything for a long time. Toward the end, the damage to brain tissue is widespread, and essentially all functions are affected.
Problems with memory are generally the earliest sign of Alzheimer’s disease. Families find it confusing that things that happened recently – yesterday or last week – are forgotten while events from many years ago can be recalled in great detail. This is because it is the storage mechanism of memory – the process that records an event in the brain so that we can access it later – that breaks down first. So information that was recorded long ago, when the storage process was still working, is available, while new experiences are not recorded efficiently or consistently and therefore are not remembered once the event has passed.
This loss of memory storage is very disorienting. We depend on recent memory to navigate through our everyday lives. It is like the “you are here” map on the directory at the shopping mall. It tells us where we are in the day, what we need to do or where we need to go. Without the memory of what has gone before, we are disoriented, lost at sea so to speak, with no landmarks. It’s not clear whether this meal is lunch or dinner, or whether it is dark outside because it’s early or late in the day.
Thus the person with Alzheimer’s disease may not remember having spoken to you earlier in the week, what they had for dinner last night, or whether or not they have had their lunch yet. They often forget where they put things, forget appointments and so on. Later on, they may ask a question, only to ask it again in five or ten minutes, having forgotten both the asking and the answer. As the disease progresses the “retrieval” mechanism of memory breaks down as well, and even memories from the distant past are lost, including the names of family members and ordinary objects, as well as the date – first the day, then the month, then the year.
Another early symptom of Alzheimer’s disease is decreased initiative. The person with AD becomes less inclined to initiate activities, such as hobbies, fixing things around the house and socializing. Normally, even when we are determined to relax, like on a Sunday morning, we eventually get the urge to get up and do something. However the person with AD may sit around indefinitely, unless compelled to action by someone else. They tend to initiate conversation much less frequently and neglect their personal appearance. Initiative, this itch to do something, is one of the Executive processes, which include the planning, organization and initiation of behavior.
Decreased initiative in older adults is often mistaken for depression, especially when coupled with what we call “flattening of affect” or a blandness of emotions, which is also caused by the damage to brain cells in AD. The family is often confused by the person’s apparent lack of concern, even in emotionally charged situations. This can also occur in cerebrovascular dementia, or in strokes that affect the front part of the brain, and that can be otherwise “silent” or without obvious symptoms.
Family members can help by providing information about what has gone on and what is coming up. You can orient the person throughout the day by saying things like “I’m hungry. It’s good that lunchtime is soon.” and “What a beautiful May morning this is!” and “It will be so nice to see the grandchildren when they come this weekend.” At the same time, it is not a good thing to “test” the person’s memory by asking them questions about what they remember, which can be anxiety-provoking, frustrating and embarrassing. Expecting their participation in planning and decision making is also more upsetting than helpful for people in all but the earliest stages of AD.
Families can also increase structure and stimulation by providing a regular schedule and location for meals, outings and activities that is consistent from day to day. Although unable to initiate or organize a complex task themselves, once started on a concrete task, such as peeling potatoes or folding laundry, people with AD can often can do quite well with it, and will feel better for having things to do and an opportunity to be helpful. Familiarity, not novelty is important for people with AD.
The most important thing to provide for people with Alzheimer’s disease is human contact and stimulation. People who are isolated tend to become anxious and agitated. While some people believe that nursing homes are terrible, they are often much better places to be than alone in an apartment. There are people around, activities to participate in, regular meals that someone can make sure they attend and so on. Having familiar belongings around is very important, particularly photographs of loved ones.
Caretakers need to have support and time to themselves so that they can be calm and positive when dealing with people with AD, as they often pick up on the anxiety of those around them and become agitated. Support groups, day care and respite services are available. Family members should know that even though they won’t remember it later, people with AD can still enjoy a movie, a walk in the park, a drive in the country or a visit with children. And when conversation is not possible, a reassuring voice and a loving touch can get your message across.
Important Alzheimer’s Disease Links: