It is instinctive for humans to want a roadmap or some sort of guide to help get us through a journey or a difficult situation. We strive to know what lies ahead to help ensure that we are adequately prepared. Following a serious medical diagnosis like Alzheimer’s disease (AD), it is only natural to explore the subject with some research. What can we expect and when can we expect it?
The national Alzheimer’s Association has developed a very useful staging system for family caregivers and medical professionals to use as a frame of reference when coping with AD. However, seniors with Alzheimer’s are not guaranteed to follow these stages in a direct line. No matter how much we would like to know exactly what stage someone is in and what symptoms will develop next, we cannot. No two Alzheimer’s patients are exactly the same. To make matters even more complex, a patient’s symptoms often vary from day to day. Today, a loved one may seem like they are in stage five, and tomorrow their behaviors and symptoms may align more closely with stage four or stage six.
This disease constantly keeps doctors, family members and professional caregivers on their toes. The only certainty is that a senior’s condition will progressively worsen. Keep in mind that the following staging system is not foolproof, but it can give caregivers a general idea of where their aging loved ones fall along the Alzheimer’s disease spectrum.
Stage 1: No Impairment
Research now reveals that AD begins years, if not decades, before the onset of noticeable symptoms. Genetic research and much more sophisticated medical science will no doubt make this an important and focused area of study as we march into the future, searching for a cure. But, for now, most of us will never know if we are in the earliest stages of the disease. Unfortunately, doctors can only diagnose probable AD once symptoms begin to manifest. In fact, a definitive diagnosis can only be made through the post-mortem examination of brain tissue.
Stage 2: Very Mild Cognitive Decline
This stage may indicate normal age-related decline or the very earliest signs of Alzheimer’s disease. At this time, the afflicted person and possibly their close family members and friends may have a sneaking suspicion that something is amiss. However, even a person with Alzheimer’s at this stage is usually capable of hiding their slight impairment or explaining it away.
A little more forgetfulness could be due to natural aging, but unusual changes in mood, behavior and/or judgement typically indicate that something more serious is at work. Proactive individuals may seek answers from their primary care physician (PCP), but they are not likely to get the satisfaction of a definite yes or no at such an early stage. Instead, patients come away with a diagnosis of depression—a condition that shares many symptoms with Alzheimer’s and often occurs along with various types of dementia. Or, a patient may receive a recommendation to minimize stress, make lifestyle changes and pursue mentally stimulating activities to keep the brain active and healthy.
Stage 3: Mild Cognitive Decline
This is a tricky point in the disease. The Alzheimer’s Association says that early-stage AD can be diagnosed in some, but not all, individuals with symptoms that are recognizable to close family and friends. These symptoms include difficulty with words and names, especially when it comes to remembering names of new acquaintances. Unusual performance issues at work or in social settings, reduced retention of recently read material, losing or misplacing belongings, and a decline in planning and organizational abilities are strong indicators of a deeper underlying issue. If a few or all these symptoms are occurring simultaneously, then a doctor’s appointment is in order.
This is still a point where cognitive testing may be inconclusive and a diagnosis could be a tough call. If someone is very concerned, he or she should see a physician, such as a geriatrician, neurologist or neuropsychologist, who is uniquely qualified to diagnose Alzheimer’s disease and other types of dementia, of which there are many. Early diagnosis is crucial for many reasons. In the early stages, medications can be prescribed to help maintain better brain function longer into the disease.
Early diagnosis also allows families more time to prepare for the future legally, financially and logistically. If worries are brushed off for too long, then valuable time and opportunities may be lost. Still, this is not the time to panic. Pursuing testing is wise, even though there is likely still room for doubt. The worst-case scenario is that a patient and their family gets their affairs in order prematurely.
Stage 4: Moderate Cognitive Decline
This point in the progression is considered mild or early-stage AD and by now there are definite symptoms of the condition that a careful medical examination can detect. This includes an obvious decrease in knowledge of recent events, both personal and concerning the local community/world. A person’s capacity to engage in everyday planning and organizational activities such as balancing a checkbook or planning a dinner for a group of people would also be affected.
Decreases in performance on standardized mental status tests, such as the Mini-Mental State Exam and the Mini-Cog, would be evident as well. Keep in mind that some patients are still able to feign normal functioning in high-pressure situations, such as doctor’s appointments. This frustrating phenomenon is known in the dementia care community as “showtiming,” and it can hinder a timely diagnosis.
Again, remember that it is important to have a baseline performance score on these mental state tests for reference. Knowing how well a person performed similar tasks at an earlier time will help with ongoing comparisons and the detection of worsening symptoms. Some people have always struggled with math and numbers or never exhibited high levels of reading comprehension, but that doesn’t mean dementia is present. The important thing to look for is uncharacteristic changes in memory and abilities.
Stage 5: Moderately Severe Cognitive Decline
Also known as moderate or mid-stage AD, this is where symptoms become obvious and begin to seriously affect one’s day-to-day functioning. Frustrations mount for most patients and their close family members, friends and employers. Those in this stage are painfully aware that they are not functioning normally, and it understandably makes them angry and possibly even more confused. They often take their exasperation out on the people they feel safest with, such as spouses or adult children. Of course, it is these very people who step up to help and take on the difficult role of caregiver.
Major gaps in memory and requiring assistance with activities of daily living (ADLs) are common at this point in the disease. Patients are often unable to recall their current address, telephone number or where they graduated from school, and they can become confused about the date, their surroundings and even the current season. Easier arithmetic, such as counting backward from 20 by twos, is suddenly a serious challenge. Poor judgement begins to take over and a patient may have difficulty dressing appropriately for events, weather and even the correct season. The disease’s effects on judgement can make seniors especially vulnerable to undue influence, scams and fraud at this and later stages.
Although memory and daily function may be somewhat impaired in stage 5, patients usually retain “substantial knowledge about themselves,” such as their own names and those of their immediate family members. However, they generally do not need help eating or using the toilet yet.
Stage 6: Severe Cognitive Decline
This moderately severe mid-stage is where forgetfulness becomes the least problematic symptom. Instead, significant personality changes and troublesome dementia behaviors begin to take center stage. That sweet person you used to know may suddenly become combative, volatile and possibly violent at times. The Alzheimer’s Association says that at this stage, people lose “most awareness of recent experiences… as well as their surroundings.”
Individuals in this stage can be very inventive when trying to outwit their caregivers. They are also prone to wandering, so providing constant supervision to keep them safe is an ongoing challenge. Astonishingly, patients may find ways to undo several complicated locks on doors or start a supposedly disabled car. Family members sometimes install an alarm system that is meant to alert homeowners if someone is breaking in but instead use it to keep track of whether their loved one is trying to elope.
During this wandering-prone stage, the patient must be watched carefully. Dementia sufferers may try to “escape” from their homes, either by car or on foot, and inadvertently become lost. In the best-case scenarios, caregivers, neighbors or the police are able to track down these individuals and bring them home safely. Unfortunately, some Alzheimer’s patients may be found injured or in poor condition. Some seniors succumb to the elements while they are lost outdoors. Because of these risks of wandering, there are alarms, ID bracelets, GPS pendants and other forms of protection on the market that can help keep track of dementia patients or find those who have eloped from their home or a long-term care facility.
Patients in this stage often do not remember their own histories and can forget the names of people they love (although they usually continue to recognize faces). They need help dressing and toileting. Normal sleep/wake cycles may give way to wandering and agitation all night long. Lack of sleep further compounds memory, mood and emotional symptoms, creating an exhausting positive feedback loop. Unfortunately, this means that family caregivers’ sleep habits and patience suffer as well.
Specific instances of confusion and agitation that occur later in the day or in the early evenings called “sundowning” can develop at this stage. This phenomenon is thought to have to do with changes in lighting and/or activity at a certain time of day that triggers the patient’s need to do something important. The kicker is that they don’t know what they must do or how to do it. This urge usually stems from habits and patterns of behavior that have become ingrained over a patient’s lifetime. For example, they may have the impulse to go home from work or begin cooking dinner in the evenings. However, because they are no longer able to hold a job or understand how to cook a meal, confusion and frustration ensue. Whatever the cause, this is a difficult time of day for many caregivers and dementia patients.
This is also the phase where the caregiver will witness increased paranoid or suspicious behavior in their loved ones. Hallucinations and delusions are not at all uncommon, and compulsive behaviors, such as picking at skin or nails, tissue shredding, scratching and hand-wringing can occur.
At this point, the patient may need to be moved to a secure environment where they are both stimulated and safe. This minimizes or completely eliminates the dangers associated with wandering and provides the caregiver with some needed relief from their around-the-clock responsibilities.
Stage 7: Very Severe Cognitive Decline
This severe late stage of AD is the sad time when a patient’s speech becomes unrecognizable, urinary and bowel incontinence set in, eating unassisted is difficult, if not impossible, and swallowing can be impaired (a condition known as dysphagia). Seniors in the advanced stage usually need assistance and support with walking, sitting, standing up and transfers. If a patient is able to stand up at this stage, it is likely that they are very unsteady on their feet. They should be closely monitored as falls can be a dangerous complication. A dementia patient’s needs become so great in these later stages that it is vital for caregivers to seek out assistance, either in the form of in-home care, a memory care facility or even hospice care.
Family caregivers often become frantic when their loved ones refuse to eat later on in the disease. There is little we can do to ameliorate their symptoms, so we resort to providing food as a way of offering comfort and showing we care. However, this can be risky as the patient becomes frailer. Dysphagia can easily result in aspiration of food particles and saliva into the lungs, which may develop into pneumonia—a dangerous and often deadly infection. As neurological damage progresses, patients may not know what to do with food that is put in their mouths or be able to coordinate the complex movements involved in chewing and swallowing. Those at the end of life may refuse to eat altogether because their organs are shutting down and can no longer process food.
Patients in this stage become increasingly weak and susceptible to bacterial infections, such as pneumonia, C. difficile and urinary tract infections (UTIs) , which may lead to a widespread infection of the body called sepsis. The final stage of Alzheimer’s will bring death, but hospice care can provide symptom management and support the patient, their caregiver and their family members.
From stage 3 on, Alzheimer’s disease is a mind-bender to deal with. Each stage puts new demands and strains on the patient and their informal and professional caregivers. Education can help immensely throughout this process, so it is important for family members to learn as much as they can about this condition, ask questions of medical professionals and seek out advice and support from other caregivers who have had first-hand experience with Alzheimer’s. Caring for someone with AD takes a super-human effort, and embarking on this journey alone should not be an option. This is a difficult disease where community support can make all the difference. Be sure to get help for your loved one and get help for yourself.