An estimated 5.8 million Americans and their families are currently living with Alzheimer’s disease. Because the disease causes problems with memory and comprehension, it can be difficult and confusing for patients and their loved ones to understand. It may also be hard to know how to provide the best care if you’re a caregiver for someone with Alzheimer’s. The first step to clear up any confusion is understanding what Alzheimer’s disease is.
The Basics of Alzheimer's Disease
Through plaques and tangles in the brain's neural pathways, Alzheimer’s attacks and kills nerve cells and tissue. It also "affects a person’s ability to remember, think, plan and ultimately function," explains Monica Moreno, Senior Director of Care and Support for the Alzheimer's Association.
Dementia itself is not a disease. It is a term used to describe symptoms such as loss of memory, loss of judgment and other intellectual functions. Alzheimer’s is the leading cause of dementia, accounting for an estimated 60 to 80 percent of all cases. One of the most common symptoms seen early on of Alzheimer’s is difficulty remembering newly learned information. This is because changes typically begin in the part of the brain that affects learning new things.
“Although age is the greatest known risk factor, Alzheimer’s is not normal aging. Brain changes associated with Alzheimer’s may begin 20 or more years before symptoms appear. Most everyone experiences occasional memory lapses. But when memory or cognition issues become more frequent and start interfering in daily life, it’s important to be evaluated by a physician who can look for signs of Alzheimer’s,” says Moreno.
Who is at Risk for Alzheimer's?
The vast majority of the 5.8 million Americans living with Alzheimer’s are age 65 and older. However, according to Moreno, there are more than 200,000 Americans under age 65 living with early-onset Alzheimer’s. The signs and symptoms of early or early-onset Alzheimer’s mimic those associated with late-onset Alzheimer’s. However, the experience itself can be very different.
Most people diagnosed with early-onset Alzheimer's have symptoms in their 40s and 50s, explains Molly Fisher, LCSW, the Alzheimer’s Foundation of America’s Director of Educational and Social Services. People with early-onset Alzheimer’s are often still working. Many may be at the peak of their professional careers and finding it harder and harder to excel in their jobs. Some individuals lose their jobs for poor performance without understanding why. Those who stay employed can become increasingly frustrated and overwhelmed at meeting job responsibilities.
If the person living with early-onset Alzheimer's is the primary breadwinner, family finances can become stressed. “These individuals may have more financial responsibilities including mortgages and college tuitions. Since they are younger, they may not be financially prepared to retire,” says Moreno.
Being younger in age may impact whether or not Alzheimer's is accurately diagnosed. Younger people may be more likely to explain away changes in memory or thinking. Because they may still be working and lead busy lives, they may assume the cause is stress or fatigue. As a result, they may not consult their doctor until the symptoms have become debilitating.
What are the Stages of Alzheimer's Disease?
Medical experts have broken down Alzheimer’s disease into three stages: mild (early stage), moderate (middle stage), and severe (late stage). “Alzheimer's disease affects people in different ways and how individuals progress through these stages can vary significantly,” says Moreno. Below is a brief overview of each stage, but what your loved one experiences in each will be unique to them.
In the early stage of Alzheimer’s, many people function independently. "Close family members and friends may start noticing changes, including problems coming up with the right word or challenges performing familiar tasks at work or home. They may often lose things, have difficulty carrying out tasks, especially those which involve several steps. There may also be a change in mood and/or behavior" notes Fisher. This stage is often misdiagnosed because most of the symptoms are commonly attributed to chronic stress or depression.
Symptoms of early-stage Alzheimer's include:
- Forgetting words
- Misplacing objects
- Forgetting something that was just read
- Asking the same question over and over
- Increased difficulty with making plans or organizing
- Not remembering names when meeting new people
- Trouble completing familiar tasks at home or work
- Forgetting the rules to a favorite game
- Trouble with numbers or reading
- Withdrawal from social activities
It can be very challenging to know how much assistance to give in this stage because as Moreno says, “The person with early-stage dementia is primarily independent. They can dress bathe, walk and may still drive, volunteer or work."
With the guidance of your loved one’s physician, you can provide support with everyday tasks. However, you want to find a balance between independence and safety. Make sure your loved one's safety is not at risk if he or she performs a task alone. If the task is safe, provide encouragement and continue to provide supervision as necessary.
Talking things over also helps. To determine how and when to provide support, Moreno suggests asking your loved one about what they need or the frustrations they may be experiencing. Talk it through and then make a plan.
According to Fisher, "Most patients are diagnosed with Alzheimer's during this stage. This is the longest period of the disease and probably most difficult for the family and caregivers of the patient.” During this stage, the symptoms of Alzheimer's are more pronounced, but the patient may not require around-the-clock care.
Symptoms of mid-stage Alzheimer's include:
- Increased memory loss and confusion
- Trouble recognizing family and friends
- Continuously repeating stories, favorite wants (e.g., foods, places, songs, etc.), or physical motions
- Decreased ability to perform complex tasks (e.g., planning dinner) or handle personal finances (e.g., paying bills)
- Lack of concern for hygiene and appearance (e.g., forgetting when they last took a bath or brushed their teeth)
- Requiring assistance in choosing proper clothing for the day, season, or occasion
- Depression, anxiety, and irritability
- Wandering or forgetting where they are/why they are there
- Physical and verbal outbursts
- Changes in sleep patterns (e.g., experiencing sundowning)
“In this stage, a person may experience greater difficulty communicating. They may need more support performing daily tasks such as bathing or dressing,” says Moreno. She stresses that caring for someone in the middle stages of Alzheimer's requires flexibility and patience. You will need to adapt daily routines and structure to fit your loved one's abilities.
As the disease progresses, symptoms will become more pronounced and noticeable by others. “Family members need to be aware of personality and behavioral changes. They'll notice their loved one is often agitated, frustrated, angry, and often throw tantrums,” says Moreno.
Care needs are in-depth during the late stage. Now a person will begin needing around-the-clock care from family (if at home), as well as a licensed nurse or professional caregiver.
Symptoms of late-stage Alzheimer's include:
- Total memory loss
- Difficulty talking or an inability to talk
- Recognizing faces but forgetting names
- Mistaking a person for someone else
- Difficulty walking and sitting
- Difficulty swallowing and may need to be fed through a tube
- Trouble breathing
- A strong need for holding something close for tactile stimulation, nurturing, companionship and comfort
- Not recognizing when he is thirsty or hungry
- Needing help with all basic activities of daily living
- Loss of bladder and bowel control
The focus is now on preserving quality of life and dignity. However, you may still be able to connect with a person with Alzheimer’s. You can express your love and support through touch, sound, sight, taste and smell. Many patients respond to hearing his or her favorite music or looking at old photos with a loved one. You can also read portions of a favorite book aloud to him or her.
The most difficult part for the family is often when their loved one no longer recognizes them. It is emotionally draining to care for a loved one day in and day out, especially if he or she no longer recognizes you. Moreno strongly recommends caregivers practice self-care by taking breaks and relying on national and local resources. Accept the offer of help from friends, neighbors and family members or reach out when you need more support.
Getting Support with Alzheimer's Disease
Caring for someone living with Alzheimer’s or other dementias is demanding and challenging. The caregiving needs of people living with Alzheimer’s will increase as the disease progresses and the length of caregiving can last for many years – even decades.
Fortunately, help is available. There are numerous national and local resources are available to help caregivers provide the best care (or make sure an individual is receiving the best care). These include:
The Alzheimer’s Association
The nationwide chapter network provides local support and programs to families impacted by the disease.
To contact: Call the 24/7 helpline at 1-800-272-3900. Available 365 days a year, families can receive help with navigating a variety of caregiving and disease-related issues.
Alzheimer’s Foundation of America
Provides support, services and education to patients, family members and caregivers. It works with more than 2,800 organizations across the country to provide support and educational services.
To contact: Call the helpline at 1-866-232-8484
A primary care physician, neurologist or gerontologist may be able to suggest local support groups and resources in your area. These may focus on caregiving strategies or caregiver stress management. They may provide an outlet to share the emotional toll of having, or caring for someone with, Alzheimer’s. Many of these are held at hospitals, public parks and community senior centers.
Your place of worship
Religious sites like churches and synagogues may offer support group counseling sessions, along with the opportunity to speak to a member of the clergy for support. These may be conducted for patients, family and caregivers, or both.