What You Need to Know About Alzheimer’s Disease as a Caregiver

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.