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Sue Ryan never imagined herself working in healthcare, but when her aging father developed Alzheimer’s disease, she found herself shifting into the profession of caregiving. Years later, Ryan found herself in the caregiving role again, this time for her late husband. 

When the COVID-19 pandemic hit in March 2020, Ryan and her husband were already several years into his journey with the disease. She thought she was well-equipped for the challenge, having served as a caregiver for both her father and grandmother, but when lockdown occurred, her carefully managed system suddenly collapsed. Nevertheless, she pulled through, thanks to wells of support from other caregivers.

Ryan’s main advice to family caregivers? “Quit thinking you should be able to do it all yourself,” says Ryan. “No, you shouldn’t. Don’t struggle alone, share it. The best thing for your mental, emotional, and physical health is to have someone support you and be with you.”

Whether you’re in the throes of your loved one’s journey with Alzheimer’s or someone close to you just received a diagnosis, here’s everything you need to know about Alzheimer’s disease, caring for someone with dementia, and how to support yourself as a family caregiver so you don’t burnout, from the experts who have made caregiving and supporting Alzheimer’s caregivers their life’s work.   

Understanding Alzheimer’s Disease

To better comprehend the role of a caregiver of an individual with Alzheimer’s, it’s first vital to understand the neurological disease itself and how it manifests.

“Alzheimer’s disease is a neurodegenerative disease that frequently manifests with progressive forgetfulness, but can also present with impairment in language, multitasking, navigation, and behavior—either with memory impairment or alone,” says Seyed Sajjadi, MD, a neurologist and the chief of the memory disorders division at the Department of Neurology at the University of California, Irvine School of Medicine. 

It is a progressive neurodegenerative disease that is guaranteed to worsen over time, requiring additional care systems—not only for the receiver but for caregivers as well.

According to Dr. Sajjadi, there are seven key stages of Alzheimer’s that are important to know, and each is marked by main symptoms as the disease progresses:

Stage 1: Before Onset of Symptoms

This stage usually begins around 10 to 15 years before the onset of Alzheimer’s disease symptoms and signs, says Dr. Sajjadi. It’s marked by the presence of abnormal proteins in the brain, however, no symptoms are present as of yet. 

Stage 2: Mild Cognitive Issues 

This stage of the disease is marked by very mild cognitive problems, says Dr. Sajjadi. This may include basic forgetfulness, like forgetting people’s names or where they left their keys. Nevertheless, your loved one may still be able to drive, work, and generally be social. 

Stage 3: Detectable Memory Lapses

The third stage of Alzheimer’s disease progression is marked by noticeable memory and social difficulties. “At this stage, patients will have mild cognitive problems that are detectable by family and friends,” says Dr. Sajjadi. Beyond forgetting names, your loved one might have trouble recalling recently read material, remembering plans, and challenges in social settings. 

Stage 4: Challenges to Executive Function

At this stage, which can last many years, individuals are typically affected in multiple cognitive areas, not just memory. Executive function, such as the ability to multi-task, may be influenced, as well as language and orientation, says Dr. Sajjadi. 

Stage 5: Diminished Independence

This is typically the stage in Alzheimer’s disease progression that individuals start to need help with activities of daily living, says Dr. Sajjadi. This period is marked by early signs of dementia as your loved one begins to have trouble remembering close family and friends, struggle to learn new things and have a hard time completing basic tasks like getting dressed. 

Stage 6: Severe Symptoms

By this stage, the patient must heavily rely on others for help, says Dr. Sajjadi. Behavior and personality changes become more severe, and your loved one may struggle to recognize family members and close friends. Communication may also become more challenging, as they have a hard time expressing specific thoughts. 

At this stage, round-the-clock care is often recommended as your loved one may not be able to manage their own care. “They cannot be left alone due to confusion about the appropriate course of action in case of emergencies,” Dr. Sajjadi notes. 

Stage 7: Physical Deterioration 

This is the most severe stage of Alzheimer’s disease as individuals lose their ability to engage with the surrounding world and develop severe physical impairments, too, says Dr. Sajjadi. They may struggle with swallowing, become reluctant to eat, and even grow immobile, Dr. Sajjadi adds. Round-the-clock care may be required to help with walking, sitting, swallowing, and other mobility issues.

The Role of a Caregiver

When it comes to caregiving, there are many emotional and physical responsibilities a caregiver of an individual with Alzheimer’s may have. And these responsibilities may shift as the illness progresses.

• In the early stage of Alzheimer’s disease, for example, most people are still able to function on their own and may continue to live independently. They may still drive and participate in their favorite activities, notes Elizabeth Edgerly, PhD, senior director of Community Programs and Services at the Alzheimer’s Association. “However, they may need medication reminders or help with remembering appointments.”
• Those in the middle stage of Alzheimer’s, which is the longest stage and can last many years, in comparison, may need additional support with activities and daily care (i.e., dressing, bathing, and using the toilet) over time, Dr. Edgerly says.
• Finally, during late-stage Alzheimer’s disease, “people will experience major declines in their ability to respond to their environment or carry on a conversation and will eventually be dependent upon others for all of their care,” Dr. Edgerly notes.

During this time, but really any stage of Alzheimer’s, families may need to re-evaluate whether they’re still able to provide the needed care or consider bringing in extra help. Your loved one may require care beyond what you’re able to provide, so it’s important to be aware of the resources and other care options available, says Jenny Munro, MA, a gerontologist and response team manager at Home Instead, an in-home senior care service provider. 

While, as a family member, you might feel guilty or wonder if you’re doing the right thing by outsourcing care, it’s important to remember that these decisions are about doing what’s best for your loved one and ensuring they get the care they need, Dr. Edgerly affirms. “Making difficult decisions to ensure that your family member is safe and well cared for is the best thing you can do as a caregiver.”

Challenges Faced by Caregivers

As Alzheimer’s is a progressive disease, caregiving tasks often escalate and become more intensive over time, says Dr. Edgerly. “During the course of the disease, Alzheimer’s caregivers are often managing multiple conditions, including memory loss, loss of mobility, reduced communication skills and behavioral and personality changes.” Not to mention, many family caregivers are also juggling work and social responsibilities in addition to family responsibilities. 

It’s safe to say that most family caregivers are overwhelmed. It’s not uncommon for those caring for someone living with Alzheimer’s to experience anxiety, exhaustion, and even denial, says Munro. According to previous research, caregivers of older adults with dementia also frequently suffer from emotional distress and sleep disruption.

Some other challenges faced by the more than 11 million Americans serving as dementia caregivers, according to the Alzheimer’s Association 2024 Facts and Figures report, include:

• Chronic health conditions. “Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers,” says Dr. Edgerly.
• Depression. “The prevalence of depression is higher among dementia caregivers when compared to caregivers of other conditions,” per Dr. Edgerly.
• Emotional and physical stress. Fifty-nine percent of caregivers across the country report “high” to “very high” emotional stress due to caregiving, while 38% report “high” to “very high” physical stress, Dr. Edgerly notes.

Strategies for Effective Caregiving

If you find yourself in the role of a family caregiver, you might be wondering what are some effective strategies for caregiving to make sure your loved one is still able to maintain some level of autonomy, while still ensuring their own personal safety and the safety of those around them. 

Autonomy for those with Alzheimer’s will look different for different people based on their needs and priorities, says Dr. Edgerly. “In addition, these strategies will change as the disease progresses.”

For example, in the early stages of Alzheimer’s, “individuals may still enjoy many of the activities that they enjoyed prior to diagnosis—whether it is going out to dinner, entertaining friends, exercising or listening to music,” says Dr. Edgerly. But as the illness progresses, you may need to adapt these activities accordingly. It’s important to find meaningful and appropriate activities that meet the person where they’re at, and help them enjoy life with dignity, Dr. Edgerly notes. 

Here are some other strategies for effective caregiving, according to Dr. Edgerly and the Alzheimer’s Association, including communication tips and ways to safeguard the home: 

Home Safety Tips

• Keep walkways lit. To reduce falls and disorientation, it’s important to keep walkways well-lit. “Add extra lights to entries, doorways, stairways, and bathrooms,” says Edgerly. “Use night lights in hallways, bedrooms, and bathrooms.”
• Remove tripping hazards. “Keep floors and other surfaces clutter-free.” This includes: keeping any extension cords tucked away and removing throw rugs, magazine racks, and other small furniture items that can be tripping hazards. 
• Safeguard the kitchen. Opt for appliances that have an auto shut-off feature. Also, “prevent unsafe stove usage by applying stove knob covers, removing knobs or turning off the gas when the stove is not in use.”
• Avoid injury in the bathroom. You can do so by installing walk-in showers, adding grab bars to tubs, and adding textured stickers to slippery surfaces. Additionally, “set the water temperature in sinks and bathtubs to 120 degrees Fahrenheit or less to prevent scalding.”
• Strategically install locks. It’s usually advised that you remove locks in bathrooms and bedrooms to prevent the person with Alzheimer’s from locking themselves in. Also, if your loved one tends to wander, it might be worth installing deadlocks on exterior doors to make it difficult for them to wander outside of the house. But make sure to keep an extra set of keys for yourself hidden near the door for easy access! 

Communication Do’s and Don’ts

Don’t

• Exclude the person from conversations. “People with dementia want to feel included, especially in discussions that are about them,” explains Edgerly. “Speak directly to the person rather than his or her caregiver or companion.”
• Interrupt, unless help is asked for. “Give the person plenty of time to respond so he or she can think about what to say. Keep in mind that the person living with dementia may need extra time to think and develop a response.”
• Complicate conversations. Ask one question at a time, and break down requests into easy-to-follow steps. Also, consider asking “yes” or “no” questions versus open-ended ones. Lastly, “if you are asking a question involving more than one choice, keep in mind that some people living with dementia will lean to the last option offered.” If you know the person really likes spaghetti, rather than asking: “Would you like spaghetti or hamburgers for dinner?” ask: “Would you like hamburgers or spaghetti for dinner?” 
• Argue. “Trying to force the person to understand something they cannot only causes greater confusion, discomfort, and agitation.”
• Ask: “Do you remember when…?” or “Who am I?” “You really don’t want to set this up for someone with dementia who will, sadly, someday forget who you are.”

Do 

• Be patient. Individuals in the early-stage of Alzheimer’s may still be able to participate in meaningful conversations and engage in social activities, but they may repeat stories or have difficulty finding the right word, so it’s best to not rush them as they try to form their thoughts. 

Resources and Support for Caregivers

While caregiving is a hard and overwhelming job, “caring for a loved one shouldn’t cost you your physical and mental well-being,” Munro reminds us. “If it does, it’s time to re-evaluate your caregiving routine to protect your own health.”

As difficult as it may be, as a family caregiver, you need to make your health and well-being an equal priority. Not only will prioritizing your health keep you mentally and physically in shape, but it can also help you be a better caregiver, says Dr. Edgerly. 

Without further ado, here are some tips for taking care of you, while caring from someone with Alzheimer’s disease, according to Dr. Edgerly and the Alzheimer’s Association:

• Consider respite care. It’s normal to need a break from caregiving duties—no one can do it all by themselves. If you’re feeling overwhelmed, consider asking for help. This might include getting a family member or friend to take over for you, so you can spend time on self-care or taking advantage of respite care services, like an adult day care center. 
• Connect with other caregivers. Seek out help and advice from others who are in a similar position as you. Luckily, the Alzheimer’s Association offers a free online community designed for people living with dementia and their caregivers. They also have an event directory, which allows you to look up educational programs and support groups in your area. The Caregiver’s Journey, founded by Sue Ryan and her co-host Nancy Treaser, also offers useful tips to family caregivers of people with Alzheimer’s.
• Lean on your community. As a caregiver, it’s important to organize family and friends who want to help provide care and support so you’re not in it alone. 
• Take care of yourself. “Sustained caregiver stress can lead to caregiver burnout—a state of physical, emotional, and mental exhaustion,” says Dr. Edgerly. To avoid burnout, try to stay physically healthy by eating well, exercising, and getting plenty of rest. And if the stress becomes too overwhelming, don’t be afraid to seek professional help. 
• Accept changes. Eventually, your loved one will need more intensive care, so be sure to research care options early so you are prepared when the time comes to consider additional or different care.
• Know you’re doing your best. “It’s normal to lose patience or feel like your care may fall short sometimes,” says Dr. Edgerly. But just remind yourself that you’re doing the best you can with the resources available to you. 

Keep in Mind

As a caregiver, the worst thing you can do for your mental and physical well-being is isolate yourself. While caregiving can be a solitary responsibility, it doesn’t have to be. Whether it’s leaning on your community of family members and close friends, connecting with other caregivers, and/or taking advantage of the resources offered by the Alzheimer’s Association and other community organizations, know support is out there. 

“Caregivers who experience burnout put their own health at risk and compromise their ability to care for someone else,” Dr. Edgerly emphasizes. Staying physically and emotionally strong through self-care activities and seeking help is not only important for taking care of yourself, but it also helps you be the best caregiver you can be for your loved one. 

As someone who has been caregiving for a family member with dementia for the past year, I will tell you point blank that I really had no idea what it was going to be like until I was doing it. Yes, I knew what the basic tasks might look like, but the sheer endlessness of the day-to-day responsibilities—not to mention the physical, mental, financial, and emotional toll this kind of caregiving takes…well, it blows me away. You truly can’t know what it is like until you are knee-deep in it.

But here’s the thing: knowing that I’m not alone is what has saved me. The more people I talk to about their experiences—which closely mirror mine in so many ways—the more I can get through each day with grace, resilience, and love. And while there’s some truth in the idea that you have to experience it to really understand it, hearing some honest, unedited accounts of what caregiving is really like is a fantastic way to help new caregivers prepare for the experience.

In this piece, we’ll hear from real caregivers about what the experience is like. We’ll also get tips from a licensed mental health professional for managing the often-rocky waters of caregiving for a loved one.

Emotional Challenges

First, let’s look at some of the emotional challenges caregivers often experience. Of course, these challenges are different for each of us, as we all come from different backgrounds and have different care situations.

Here are some emotional challenges that many of us can identify with.

Anticipatory Grief

Jennifer Fink, a former Alzheimer’s caregiver for her mother for 20 years and a volunteer for the
the Alzheimer’s Association says that no one warns you about the “anticipatory grief” of caregiving. Anticipatory grief is a type of grief you live with for a period of time, knowing loss will come eventually and is inevitable.

Anticipatory grief is especially common when it comes to Alzheimer’s and other dementias. That’s because these diseases can take time to unfold. Often, you watch your loved one degenerate over a number of years, with each stage of the disease its own separate loss. “For some, it’s somewhat a quick journey; for others it’s slow,” Fink describes. “Both are horrible in their own ways.”

Swift Changes in Roles and Identities

One of the most difficult aspects of caregiving is the sudden change of identity many of us experience. This is often the case when a child has to start caring for their parents. All of a sudden, you are the parental figure in the relationship. The impact of these changes can be jarring and hard to reconcile.

“As a caregiver related to the patient, and in particular as a child, no one really warns you about the impact of struggling with the decline in health of your parent, of eventually being more their caregiver and being stripped of being just their child,” says Nikki Beauchamp, associate broker at Sotheby’s International Realty, and sole caregiver for her mother and father prior to and up until their deaths.

As Beauchamp describes, these changing roles and relationships can have strong impacts on family dynamics, “especially if those dynamics are already imbalanced and fractured.”

Feeling Alone and Misunderstood

It can be hard for others to truly understand what you are going for, and empathy can sometimes feel hard to come by. Beauchamp describes the unrelenting “strain of having your life consistently derailed by never-ending doctor’s appointments and meetings about doctor’s appointments or spending all of your free time scheduling doctor’s appointments.”

She describes how alone she felt while caring for her parents. “Unless someone has been a caregiver, you’ll find that most of your friends and colleagues will have no understanding and little to no empathy,” she shares.

Physical Impacts

Caregiving can have profound effects on our bodies and our overall physical well-being. Here are some examples.

Stress, Burnout, and Sleep Issues

“Physically, caregiving can lead to chronic stress and burnout, with studies linking it to higher rates of sleep disturbances, anxiety, and even cardiovascular problems,” says Becky Reiter, LPC-S, licensed professional counselor supervisor at Resilience Counseling & Wellness, specializing in caregiver stress, chronic illness, mental health, and more.

For instance, a 2016 systematic review found that 76% of caregivers experienced poor sleep quality, which included not getting enough sleep and waking up frequently throughout the night. According to MedlinePlus at the National Library of Medicine, caregiver stress is linked to a weakened immune system, excess weight gain, and even chronic diseases like heart disease, diabetes, and cancer.

Neglect of Your Own Health

Part of the reason that so many caregivers have negative health impacts is that they find it so hard to take time to manage their own health problems. Caring for someone whose mental or physical abilities are declining is often a full-time job, Fink says. Plus, you’re typically balancing this care while working and taking care of your own family. It becomes overwhelming and nearly impossible to get to the doctor or take preventative steps to stay healthy.

“I facilitate a support group and one member who lost their spouse last summer, is now getting ‘caught up’ with their own health needs,” Fink shares. “They are lucky that nothing has gotten worse to the point of serious issues.”

Mental Health Impacts

Caregiving can have serious impacts on our mental health. Here, we’ll look at some common mental health challenges caregivers face.

Mood Changes

The relentless responsibilities of caregiving can take a toll on your mood and concentration, says Reiter. It can make it difficult to have the bandwidth to show up fully in your own life. “It’s not uncommon to feel chronic overwhelm and frustration, as well as isolation and sometimes even anger,” she says. “This is especially true if a person is carrying the burden of caregiving alone, or if a person feels alone because there are other family members present but only one person is solely responsible for the care coordination.”

Increased Rates of Depression and Anxiety

“One of the toughest realities of caregiving is the emotional rollercoaster of grief, guilt, and resentment,” Reiter describes. “It’s common to experience profound feelings of loss as your loved one’s health changes or guilt when you need a break.” At times, this rollercoaster of emotions can increase your risk of developing mental health conditions like depression and anxiety. For instance, a 2022 study found that 28.6% of caregivers experience anxiety and 38.8% live with depression.

Financial Strain

The financial strain of caregiving should not be underestimated. “Caregivers often face significant financial burdens due to unpaid time off work, purchasing medical supplies, or managing household expenses with less income,” says Reiter. Research from the AARP found that caregivers often have to use their own money to pay for their loved one’s needs, with an average of $7,242 spent yearly. This amounted to an average of 26% of the caregiver’s annual income.

The financial realities of caregiving can also have lasting financial impacts, with many folks being forced to choose between their career and caring for their loved one. “I know women in their 30s who don’t have paid jobs because their mother/grandmother needs 24/7 care,” Fink shares. “This obviously affects their future retirement savings, the ability to buy a home, travel, and have their own family.”

Social Isolation

Caregiving can be an extremely isolating and lonely experience. First of all, there’s the caregiving itself, which can make it hard to maintain a social life. “The challenge of getting out of the house, navigating a social event well might feel more overwhelming than the potential benefits,” Fink says. “This is one reason caregivers might isolate themselves.”

On top of that is the fact that many people don’t usually want to socialize with you and your loved one, especially if your loved one has dementia. “It’s tough to engage with someone who doesn’t remember you or how they’re connected to you, can’t carry on a basic conversation, and without training, they give up trying,” Fink describes. “Now the caregiver is isolated because friends and family don’t visit.”

Navigating Healthcare Systems

Ask any caregiver and they will tell you that aside from caregiving itself, navigating healthcare ends up being a full-time job. Part of this is because of how these systems are set up, but it’s also that you are doing this all without much preparation, and with very little outside support.

“Caregiving involves coordinating with doctors, understanding complex treatment plans, and navigating insurance and legal systems—all without a clear guidebook,” Reiter shares. “It can feel like you’re constantly juggling appointments, long wait times, and paperwork.”

Lack of Preparedness

Overall, many of us go into caregiving in the middle of a crisis—after a hospitalization, accident, or a series of upsetting events that make it clear our loved one can no longer take care of themselves alone. As such, most of us go into caregiving like a deer in headlights, without any preparation at all.

“Most caregivers start without any training and are thrown into roles that demand new skills, like medication management and physical support,” Reiter explains. “This ‘learn as you go’ approach can feel overwhelming and frustrating.”

Troubleshooting: Making a Care Plan

Feeling like you have been thrown out to sea when you first start caregiving is a common reaction. But once you get your bearings, it’s essential that you have a plan to manage the tasks to come.

Reitner suggests creating a care plan along with everyone responsible for caring for your loved one. This might include:

• Outlining caregiving roles
• Making a list of responsibilities and assigning them out to different parties
• Creating and implementing routines to help manage stress
• Gathering resources for extra support, financial help, and disease management and education

Getting Help and Additional Resources

Finally, it’s imperative that you get support as you embark on this journey. Here are some tips from Reitner:

• Look for local caregiver support groups and online communities offered by organizations like the Family Caregiver Alliance and the National Alliance for Caregiving
• Connect with a social worker or case manager who can help you navigate services and resources more efficiently.
• Consider therapy or counseling for yourself, to help manage stress levels and your emotional well-being
• Make time for regular connections with trusted loved ones for a sense of community and a reminder that you’re not alone

Bottom Line

Caregiving can be extremely difficult, and it’s hard to be fully prepared for what lies ahead, especially when so much of caregiving is unpredictable and constantly changing. That’s why it can be helpful to have a blueprint for what’s to come, and to understand what some of the common challenges are. This can help you feel less alone.

Importantly, you should not be expected to do this alone. Support is necessary for caregivers, especially if you are struggling with your mental or physical health. Don’t hesitate to reach out to your healthcare provider or a licensed mental health professional for additional support during this time.

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.”