Caring For A Loved One With Alzheimer’s: What To Expect

Alzheimer's disease is defined as, "A type of dementia that causes problems with memory, thinking, and behavior." According to the Alzheimer's Association's 2022 facts and figures, Alzheimer's diseaseis the fifth leading cause of death in the United States, and there are approximately 5.7 million Americans currently living with it. So, does Alzheimer’s kill? Yes, but it is also a chronic condition whose average expected disease progression can last from three to eight years on average (with some cases lingering to twenty years), creating a need for long term care. Anyone who has had a loved one with Alzheimer's knows how devastating it can be. It's not easy watching someone you care about start to lose their memory and their ability to take care of themselves. 

While most of us have heard of Alzheimer's before, what many people don't know is how this disease affects those living with it. Understanding how Alzheimer's affects the body is important for loved ones and caretakers alike. It can help them be prepared as the disease progresses and allow patients to maintain their quality of life for as long as possible. While Alzheimer's cannot currently be cured, early detection is important when it comes to slowing down the process and managing symptoms.

How Alzheimer's affects the brain and body

Alzheimer's is a progressive, irreversible neurodegenerative disease that affects the brain gradually. Amyloid plaques and tangled fibers damage the brain, affecting different areas responsible for things like memory, language, and behavior. Eventually, as more of the brain is affected, patients become unable to take care of themselves and the body starts to shut down. Research shows that women are at higher risk for Alzheimer’s than men, with one meta-analysis finding that almost half the number of men of the same age were diagnosed with this condition than women. Alzheimer's is the underlying cause of death in elderly people with dementia, but it is not always the recorded cause of death. When it comes to a specific cause of death with dementias, things can get a little tricky. According to the National Institute on Aging, some risk factors are associated with Alzheimer’s disease. Diabetes, heart disease, stroke, obesity, and high blood pressure may be present and increase the risk. A person with Alzheimer’s disease diagnosed with these related conditions might also be at a higher risk of more severe physical and mental health symptoms.

A study by James, B.D., Leurgans, S.E., Hebert, L.E., et al. (2014) found that deaths resulting from complications from Alzheimer's are often underreported. According to researchers, "An estimated 503,400 deaths in Americans aged 75 years and older were attributable to AD dementia in 2010." This is much larger than the approximately 84,000 deaths reported on death certificates that year. This is because Alzheimer's is a progressive and fatal disease that leaves people dependent on others for care, and they can often die due to accidents or health problems related to the decline inherent with Alzheimer’s and other dementias. Things like malnutrition, pneumonia, and even swallowing disorders can be the cause of death, but these are a consequence of the progression of Alzheimer's. If an individual in the later stages of Alzheimer’s dies from aspiration when trying to swallow food, this is what doctors put on the death certificate, regardless of their diagnosis. This is why the figures of the nation’s report can be misleading.

In the expert opinion of Doctor Ladislav Volicer (M.D. Ph.D.), intercurrent infections are the most common cause of death for patients with Alzheimer's. An intercurrent infection is “a disease that intervenes during another disease." The most common intercurrent infection developed by Alzheimer's patients is pneumonia.

According to the National Institute on Aging, new estimates show that, when considering underreporting, Alzheimer's could, in fact, be the third leading cause of death for the elderly (the first two being heart disease and cancer). Although it’s a lesser-known and very rare type of Alzheimer’s disease, the National Institute on Aging notes that early-onset Alzheimer’s is a possibility as well. Signs typically appear when a person is between their 30s and mid-60s. Early-onset Alzheimer’s disease typically has similar risk factors and symptoms that impact brain health, like memory loss. It also progresses through the same stages of Alzheimer’s as late-onset Alzheimer’s disease.

Caring for a loved one with Alzheimer's

Most people with Alzheimer’s who receive help in caring for themselves are assisted by people they know. In fact, 83% of caregiving to older adults in the United States is provided by families, friends, or other loved ones, who are normally unpaid for their help. Caretakers of those living with Alzheimer’s are bound to have different experiences in their caretaking journey, especially as the disease progresses. Different people will have different needs, but the following are some tips for caring for someone who has Alzheimer’s.

1) establish a routine

Establishing a simple daily routine is an essential part of caring for a loved one with Alzheimer's. The idea is to make things as easy, familiar, and uncomplicated as possible to avoid frustration for the person with dementia. The reason for this is that memory loss can be scary and confusing. For Alzheimer's patients, the old and familiar can be calming and grounding, whereas trying new things may be overwhelming.

In a way, creating a daily routine that is familiar can help with an Alzheimer's patient's short-term memory loss, because the routine is formed around and becomes a part of their long-term memory. If the person always wakes up early and has coffee during the week and sleeps in on weekends, keeping that routine can help them retain a more stable sense of time.

Once you establish a routine, it's important to keep it as consistent as possible. Changing the routine can lead to confusion and feelings of anxiety, while also making it hard to settle back down again afterward. Of course, unexpected things come up, so it's important to plan for when they do and avoid frequent, unnecessary disruptions in your loved one's daily routine.

2) be patient

If you have recently become a caretaker for someone with Alzheimer's, you will probably notice quickly that the task requires a lot of patience. Doing everyday things will often take longer for someone with Alzheimer's, and it's important to allow them to do things at their own pace without becoming impatient.

In your daily life, this might mean scheduling extra time between activities and appointments, so your loved one doesn't feel too rushed. Learning to slow down can be hard at first, but it helps when you put yourself in the other person's shoes and understand how different things are for them.

This can be more difficult when trying to get things done in public because although you might be patient, other people may not be. Since you can't look at a person and automatically tell that they have Alzheimer's, some people you run into throughout the day might not understand why your loved one needs to take their time or behaves a little differently.

One solution that some people have found is the use of Alzheimer's ID cards to discreetly let someone know that the person you are with has Alzheimer's or dementia. In these situations, making them aware and asking for a little bit of understanding and patience can go a long way.

3) keep the person involved

Alzheimer's has a big effect on things like memory, behavior, and the ability to care for yourself, which is why after a while, patients do need full-time care. However, if caring for a loved one with Alzheimer's has become your responsibility, allowing them to live and make their own choices whenever possible is important.

How this looks depends on how far along the illness has progressed. In the early stages, it might mean keeping an eye on your loved one and only interfering when they need it. At this point, you will also want to have conversations with other loved ones in their lives to discuss what care will look like as the disease progresses. Later, you may be the one structuring most of their days and taking care of their affairs, but you may still let them decide things like what to wear and eat, and what they want to do in their free time.

The reason it's essential to keep Alzheimer's patients active and involved in their own life is that it helps them maintain their dignity and self-esteem while making their days seem as normal as possible. Being told that they can't do anything when so much seems out of their control can make an Alzheimer's patient feel helpless and disconnected.

4) know what to expect

One of the most beneficial things that you can do when you first take on caring for an Alzheimer's patient is a little research. Websites for nonprofits like the Alzheimer’s Association share a lot of helpful information for family members and caregivers. It might be hard to take in all the information about the disease, like what Alzheimer's is and how it can lead to death, but it can help to be prepared. Since Alzheimer's is a progressive disease, learning what happens at each stage can prepare you for what's to come and enable you to be better there for the patient.

A few reputable websites where you can learn about Alzheimer's, find helplines, and reach other great resources are:

• Alzheimer's Association
• CDC
• Alzheimer's Foundation of America

5) create a safe environment

Another important task for caregivers is creating a safe environment for their loved ones with Alzheimer's. When it comes to memory loss and brain disorders, many accidents can happen just by having things out of place. The person with Alzheimer’s could, for example, start cooking something and forget to turn the stove off. Things can happen fast, which is why it can be helpful to plan for these possibilities. Some of the ways you can create a safe environment for your loved one with Alzheimer's are:

• Putting locks on things that could be dangerous, like medication or weapons.
• Being conscious of fire and water safety, like making sure the water in the house can't get too hot and using appliances that shut off automatically.
• Avoiding clutter and things like wires, low tables, or carpeting that can cause falls.

Online therapy with BetterHelp

Online counseling services like BetterHelp offer you a convenient way to get support that’s affordable and doesn't require you to be away for appointments. You can connect through several different mediums, such as phone call, video chat, or instant messaging, according to your availability and preferences. Caregiving can make your schedule very busy, but online therapy allows you to still get the assistance you need.  

The effectiveness of online therapy

Many people turn to online therapy when their loved ones have been diagnosed with chronic physical or mental health conditions. One study assessed the efficacy of telephone counseling for caregivers of people with dementia. Researchers found that participants experienced reduced depressive symptoms and that the intervention met the caregivers’ important needs. These results show that online-delivered therapy can be a viable alternative to traditional face-to-face therapy.