How the Progression of Alzheimer’s Changes You

The reality of progressive conditions is that they are unforgiving and unpredictable. Whether they’re rare, commonplace, or somewhere in between, that doesn’t mean there aren’t signposts for you or your loved ones. The brain is a fickle, beautiful, confusing thing, even more so if you’re managing Alzheimer’s disease.

Lauren Nassr Willett, RN, an infusion nurse manager at the Neurology and Infusion Center of New England, says that each stage of the condition tends to bring with them a wave of different emotions that can be harnessed to improve care.

“I think, at the beginning, there’s a lot of fear,” says Nassr Willett. “Then when we start to discuss options, there becomes a lot of hope of, ‘How can we slow it? How effective will this be? How will they respond to this therapy?’ And, in that hopeful stage, we tend to offer a lot more resources. People tend to be more open to resources at that time.”

Let’s look at the stages of Alzheimer’s, how the condition affects the brain, and expert insights on what patients and caregivers can do to maintain and improve quality of life as the disease progresses. 

Preclinical and Early Stage Alzheimer’s Disease

Similar to many conditions affecting the brain, early detection is key. The medical field’s current understanding of Alzheimer’s disease is that it is connected to the release of a protein called amyloid in heightened amounts. As that amyloid builds up in the brain it starts to interfere with the brain’s ability to function at the neuron level. Many of the pharmaceutical options available to patients are focused on breaking up that amyloid protein, though physical, speech, and occupational therapy are often part of an Alzheimer’s patient’s broader care plan.

Salvatore Napoli, MD, medical director at the Neurology and Infusion Center of New England, says that technological advancements have helped improve the availability of early diagnosis.

“If we can catch them in an early phase, mild cognitive impairment or MCI, with new technology such as PET scans, we are.., able to diagnose earlier, provide quicker access to care, and start those who qualify on new treatments earlier,” Napoli explains.

Normal Signs of Aging or Early Signs of Alzheimer’s?

One of the challenges when it comes to early diagnosis, particularly in elderly patients, is that the symptoms synonymous with Alzheimer’s may look, to the untrained eye, like the normal signs of aging. In the early stages of the condition, labeled as mild, a patient might not be able to remember a word they want to use or misplace items they’ve been able to keep track of in the past. 

Should you be concerned about possible Alzheimer’s symptoms, a primary care physician is likely to focus on doing a physical and neurological exam. This is partially because, while Alzheimer’s is a cause of dementia, it is not the only form. Jason Krellman, PhD, an associate professor of neuropsychology in neurology at the Columbia University Irving Medical Center, says understanding the psychological profile of a patient at the various stages of Alzheimer’s is important in determining the next steps.

“Sometimes when someone is dealing with a very early stage disease, frankly, it’s difficult for us clinically to differentiate between normal aging or the very beginning of the clinical presentation of Alzheimer’s disease, and that’s why it’s important for us to follow people over time.”

Early Detection

Another part of getting a sense of that patient’s state is asking questions of loved ones or those in the patient’s support system. While very early symptoms may sometimes only be visible to the person experiencing them, it is often true that the family members are the first to notice a shift in cognitive ability. 

The Alzheimer’s Association suggests many challenges that are present for those who are care partners or givers for those with early-stage Alzheimer’s. One of the key areas where caregivers may struggle in this early stage is knowing where to give help and how to do so. As Krellman mentioned, the symptoms may not be immediately evident and, as a result, pathways forward may be unclear. This is where planning can have a significant role.

The Importance of Planning For Those with Alzheimer’s in the Early Stages 

While being first diagnosed with a progressive condition like Alzheimer’s is scary, and brings with it its fair share of stigma, it is also the stage where patients are at their most able to plan for the future. 

Carolyn Clevenger, DNP, RN, a professor of nursing at Emory University and the director of the Integrated Memory Care Clinic, says there are a multitude of things patients and their families can and should be planning for once the dust settles.

“A big one for people is to be able to make decisions for yourself while you have full capacity to make decisions for yourself…Completing formal documents like living wills, deciding who your healthcare proxy will be for making healthcare decisions, deciding the milestones for when you would stop driving, be comfortable moving into a different environment or having someone coming into your home,” explains Clevenger.

Another key aspect of organizing care for someone with Alzheimer’s is choosing who is going to be the primary caregiver. This helps give the patients and their care team some additional clarity and can be one step in resolving family conflict, should there be any, around what the process should look like.

She says that where things can go disastrously wrong is if patients get the initial diagnosis and feel as if they have been pushed away by the medical system to figure things out on their own. Her approach is to be clear about the best next steps while assuring them that this is a normal part of setting them up for success. 

The Middle Stage of Alzheimer’s Disease

Once the condition has progressed into the middle or moderate stage, symptoms tend to become more pronounced. This is the stage where additional care is usually needed. Some symptoms can include short-term memory loss, changes in mental state—such as an uptick in anxiety or depression—and the ability to repeat information, but not process or retain it. 

Nassr Willett says that, in her experience, the moderate stage can be trying on both the person with Alzheimer’s and their loved ones.

“I think the moderate stage of the disease may be the hardest because the patient still thinks that they’re able to do a lot of things. Their memory may come in and out. So they may have good days and bad days, which can be confusing to the families as well.”

The Importance of Routine and Structure

One key way to support someone with Alzheimer’s who is starting to have the condition take its toll is to maintain routine and structure, while not chastising them for not remembering something or quizzing the person on recent events. Providing necessary structure can mean, for example, planning events for the same times each week and ensuring there’s some form of social interaction that’s part of the person’s schedule, including sharing and building this routine with any care staff. Krellman says that maintaining that routine helps meet the patients where they are.

“We have to remember that the core deficit in Alzheimer’s disease is forgetfulness, and once that forgetfulness progresses to a moderate or severe stage, the person is living in the moment, they’re really not able to deal with and learn new information anywhere as well as they used to. And so familiarity is important, structure and routine breeds familiarity and that allows the person to function at their best level.”

Late-Stage Alzheimer’s Disease

The late, or severe, stage of Alzheimer’s is when symptoms are the most pronounced and a person’s physical abilities are also compromised. This can include struggling with gross motor movement, an inability to complete executive function tasks like maintaining personal hygiene, and the lack of the ability to communicate. At this stage of the disease, a person with Alzheimer’s may believe that they are in a different time period, something that Krellman says support systems can lean into to provide optimal quality of life.

“What you might do in that situation is actually put the person at a desk, give them some papers, and allow them to do their work however they see that work to be.”

Coping With Changes

Once someone with Alzheimer’s requires significant care support, those who spoke to Verywell Mind agreed that a caregiver needs to know their limits to be the best support for their loved one. In an ideal scenario, the roadmap for the person’s care has been laid out long before they get to the point of needing that additional support. Napoli says that, while there continues to be advancements in Alzheimer’s research, caregivers need to focus on their own health and well-being to achieve the best outcomes. 

“It takes a team, a village, to be able to care for a loved one with Alzheimer’s,” says Napoli. “One of the things a caregiver may lack is free time—ability to take care of themselves, communicate with other caregivers. It’s important caregivers make sure they have time to take care of themselves and find that support structure that can help them with barriers that come into play as they try to take care of their loved one with the disease.”