Care • 7 minute read
My Loved One Got Diagnosed with Alzheimer’s: What Now?
By Kristina James
Published by Ruby
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You’re not alone.
An estimated 5.8 million Americans of all ages are living with Alzheimer’s dementia in 2019.
That said, you may be experiencing this for the first time, which can be extremely shocking, overwhelming, and can leave you feeling unprepared to care for your aging loved one.
Gathering all your resources for the road ahead is one of the best ways to approach a diagnosis of this gravity. You need simple help that gives you a clear path forward in offering care that keeps as much quality of life for everyone involved.
What is Alzheimer’s Disease?
First, it is important to know what you are dealing with.
According to the National Institute on Aging, Alzheimer’s disease is an “irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks. In most people with the disease, symptoms first appear in their mid-60s. Early-onset Alzheimer’s occurs between a person’s 30s and mid-60s and is very rare. Alzheimer’s disease is the most common cause of dementia among older adults.”
What is the difference between Alzheimer’s and Dementia?
Dementia is not an actual disease, but a name for a group of brain disorders, and can be used as an umbrella term for a variety of symptoms all relating to:
- Communication and speech
- Focus and concentration
- Reasoning and judgment
- Visual perception (can’t see the difference in colors or detect movement, or sees things that aren’t there)
Alzheimer’s is the most common type of dementia.
60% to 80% of people who have dementia have Alzheimer’s. It’s a progressive condition, which means it gets worse over time and is usually found in people over 65. There’s currently no cure.
What are the short term and long term effects of Alzheimer’s?
Alzheimer’s disease moves slowly through 3 overall stages:
1. Mild (Early Stage)
Not to be confused with Early Onset Alzheimer’s, the Early Stage of the disease mostly starts to show up in close relationships. Friends, family or others close to the person begin to notice differences in behavior. During a detailed medical interview, doctors may be able to spot problems in memory or concentration. Common difficulties include:
- Problems coming up with the right word or name.
- Trouble remembering names when introduced to new people.
- Challenges performing tasks in social or work settings.
- Forgetting material that has just been read.
- Losing or misplacing a valuable object.
- Increasing trouble with planning or organizing.
Although these may sound like normal difficulties that come with aging, those with the disease will experience them more often and with increasing frustration.
2. Moderate (Middle Stage)
The longest of the stages, the Middle Stage requires increased caregiving due to more symptoms becoming more obvious. This stage is when you will see drastic information loss, like:
- Forgetfulness of key information and personal history – like their address or phone number, or the high school they graduated from.
- Feeling moody or withdrawn, especially in socially or mentally challenging situations.
- Confusion about where they are or what day it is.
- The need for help choosing proper clothing for the season or the occasion.
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night.
- An increased risk of wandering and becoming lost.
- Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding.
- Trouble controlling bladder and bowels in some people.
3. Severe (Late Stage).
This final stage is obviously the most difficult, and greatly lowers your loved one’s ability to interact with what’s around them, make clear connections, communicate, and control movement. At this stage, extensive help will be required for even the simplest of daily tasks.
At this stage, individuals may:
- Need round-the-clock assistance with daily activities and personal care.
- Lose awareness of recent experiences as well as of their surroundings.
- Experience changes in physical abilities, including being able to walk, sit and, eventually, swallow.
- Have increasing difficulty communicating.
- Become vulnerable to infections, especially pneumonia.
Since Alzheimer’s affects people in different ways, the timing and severity of dementia symptoms varies as each person progresses through the stages of Alzheimer’s differently.
During the late stages, your role as a caregiver focuses on preserving quality of life and dignity.
How do I prepare for life with an Alzheimer’s diagnosis?
An Alzheimer’s diagnosis can be as equally difficult for you as it is on your loved one. Caring for a loved one with Alzheimer’s requires two plans: one for your loved one, and one for yourself (or any other caregivers.) It’s never easy to care for someone sick, but the amount of emotional and physical toll it takes for loved ones is immeasurable.
Talking to your clinical care provider is vital in knowing how much care and what kind of care to give your loved one. As it is a slow-moving disease, know that you will have time to gather all the resource, knowledge, clinical help, and community support as possible.
Know this: you cannot do it alone.
Some great online resources are:
What are the financial repercussions I can expect from an Alzheimer's diagnosis?
Called the “Most Expensive Disease,” Alzheimer’s costs $341,000 on average for the health needs of someone from diagnosis to death. Families typically shell out 70% of this out of pocket. Early detection has been the key to saving thousands of dollars.
There ARE many resources to help you with the financial burdens, including the Alzheimer Association’s Community Resource Center, as well as Ruby.
A reminder for caregiving for a loved one with Alzheimer's...
When caring for a loved one with Alzheimer’s Disease, remember that your main jobs are to help maintain their dignity and their quality of life as much as it is in your power, all the while remembering that you are not superhuman, and you will need care, too! You are not alone!
Here are some more articles on taking care of yourself, while caring for others.
Caregiver Self-Care: Take Care of You
Caregiver Burnout: Has Your Caring Flame Gone Out?