What to Expect after a Diagnosis of Alzheimer’s
Updated: Dec 21, 2020
“I went in for testing, the neuropsychological testing, and the brain scan and the MRI. Basically he brought me into his office one day and said you need to go home and get your affairs in order. You have early-onset Alzheimer’s and I’ll see you in six months. And that was it!... Anytime you look up anything about dementia on the internet it is nothing but doom and gloom.” Dementia Advocate Chuck McClatchey’s diagnosis story is, unfortunately, common.
Doom and gloom may be the prevailing message. The truth is that many people are living well with Alzheimer’s. Including Chuck. Six years after his diagnosis he is an inspiring advocate for people living with dementia. Getting your ‘affairs’ in order, such as having advanced directives and making sure your end of life wishes are known, is important for anyone, with or without a diagnosis. When it comes to Alzheimer’s, there is so much more to the story.
Medical experts have broken down the Alzheimer’s journey 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. Each person's experience will be unique, just like them.
In the early stage of Alzheimer’s, many people’s lives continue much as they were before diagnosis. "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 display some early signs of Alzheimer’s, such as losing things and having 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.
What to expect during the first stage of Alzheimer’s:
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
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It can be very challenging to know how to best help someone at 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."
The best expert to consult is the person with the diagnosis. Rather than focusing on what help they need, focus on what they want to do and how to be able to do it. As Chuck says “You have to have the mentality of “I want to do this, so how can I do this?’ and not the mentality of “I really shouldn't do that, so I won't.’”
Fear for safety can easily get in the way of quality of life. Rather than thinking about what is safe and what is not, flip the script. Ask yourself how can we make this safe enough. Communicating in the early stages of dementia is important for understanding what needs to be done, and more easily allows you to make a plan with your loved one.
Taking an attitude of improvising with dementia communication can be a huge help at this stage. The journey of Alzheimer’s can feel like an exercise in saying and hearing ‘no’. An improv attitude of ‘Yes, and…’ allows you to say yes. Practicing saying yes helps train your brain to look at what is possible instead of what is not. This greatly helps reduce frustration, anxiety, and depression in both care partners.
At this stage, a little bit of help can decrease frustration and remove stress on your relationship with your loved one. Having help from a home caregiver for the little things that are easily forgotten or frustrating can make a big change. In addition, having help sooner rather than later lets you all get to know each other. Building a relationship early will be fruitful throughout the dementia journey.
Dr. Richard Taylor sets the stage for the middle part of the journey with Alzheimer’s saying, “My relationship with my spouse, my family, and my friends have broadened and in some ways deepened. We spend more time really being together. We talk more, we hug more, we cry more, we laugh more and harder and longer together.”
This way of being with Alzheimer’s is possible if we know what to expect and meet it with the right attitude and support.
According to Fisher, "Most patients are diagnosed with Alzheimer's during the middle stage. This is the longest period of the journey and probably most difficult.”
Much of this difficulty comes not from dementia itself but the inability of our culture to support the changes associated with it.
What to expect during the middle stages of Alzheimer’s:
Trouble recognizing family and friends
Repeating stories or favorite foods, places, songs, etc.
Difficulty performing complex tasks
Inability to handle personal finances
Less concern for hygiene and appearance
Needs help choosing proper clothing for the day, season, or occasion
Depression and anxiety
Wondering where they are/why they are there
Physical and verbal expressions of frustration
Changes in sleeping patterns
“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.
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As communication changes in the middle stage of dementia, it is super important to get creative about how you communicate. Expressive arts can be a great outlet and form of communication for both partners in care. The middle stage is the most playful stage.
During this time, practice letting go of how things were. Notice the present moment and be with how things are. The more you can do this the less stressed you both will be.
Focus on what brings you together. If your loved one wants to go fishing every day, as many days as you can, go and delight in their repeated joy. If there is a favorite meal they want, again and again, make it together, and get curious about what they love about it.
This is a time to be silly and playful. I have learned a lot from folks in the middle stage of Alzheimer’s about how to not take myself so seriously and how to live joyfully in the moment.
“Instead of becoming emotional about me and this brain disease, if my friends thought about it, Alzheimer’s could be a liberating event, freeing me to float through life and stand it on its head. Come fly with me.” These wise words from Thomas DeBaggio offer a helpful perspective to frame the last stage of Alzheimer’s.
More support is needed during the late stage. By now having extra support from a licensed nurse or professional caregiver will be crucial to everyone’s well-being. The earlier you start forming relationships with providers the easier this transition will be.
What to expect during the final stages of Alzheimer’s:
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
A strong need for holding something close for tactile stimulation or comfort
Not recognizing thirst or hunger
Needing help with all basic activities of daily living
Loss of bladder and bowel control
While this can seem staggering, keep in mind this is a list of what is gone. While it is important to be prepared for what will be lost, it is equally, if not more, important to look at what is present.
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The focus is now on preserving quality of life and dignity. Connect to your loved one during this phase. Express your love and support through sound, sight, taste, and smell. Many people enjoy hearing their favorite music or looking at old photos with a loved one. You can also read portions of a favorite book aloud to them.
The most difficult part for the family is often when their loved one no longer recognizes them. Know that loss of a name is not a loss of a relationship. Look for other clues that there is such as demeanor and body language. Even when names and moments are forgotten, the impact of connection remains.
Moreno recommends practicing self-care. Take breaks and lean on national and local resources. Accept offers of help from friends, neighbors, and family members. Reach out when you need more support.
During this stage, the best way to support your loved one is to be present with your loved one with dementia To the extent you can, join them in simplicity; a stripping away of the noise of everyday life. Again, focusing on what is rather than what isn’t decreases frustration and increases joy.
As Ed Voris said of his journey with Alzheimer’s, “Suppose my mind became so still that even the sense ‘I’ was gone… There would be no grasping after ‘I’ and ‘mine’, just a brilliant clarity. There would be total freedom in this clear, empty, unimpeded cognition.”
Author: Kyrie Carpenter & Gina Roberts-Grey