Originally published on The Mighty
Alzheimer’s disease tends to be well-known for its distinguishing symptom: memory loss. But there’s so much more to the condition that people may not realize until they or their loved one is faced with it. No two people with Alzheimer’s disease are exactly alike, and by better understanding the various symptoms and challenges they go through, loved ones can provide even better support and care.
We partnered with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our communities what they were most surprised to learn about Alzheimer’s after they or a loved one was diagnosed. Hopefully this information can help you in your own Alzheimer’s experience. What surprised you about Alzheimer’s disease? Share in the comments to help demystify this disease for others.
1. An Alzheimer’s diagnosis affects not just the patient, but the whole family.
When someone is diagnosed with Alzheimer’s disease, navigating “who’s doing what” in terms of care while incorporating the patient’s wishes can be tough. If you are the caregiver, you might not expect how emotionally and physically difficult it can be. It’s important to take care of yourself too, which will help you be a more empathetic and patient caregiver.
“My dad’s memory loss affected not just him,” Elizah P. said. “The hardest part was when my dad first got diagnosed, he only wanted me to know and not any of the other family members because he felt hurt and ashamed for having Alzheimer’s. … I never regretted being able to be there and take care of my dad.”
2. They may still remember things you wouldn’t expect.
Not all memories are created equal — every person has short-term memories as well as long-term memories. Alzheimer’s disease tends to affect short-term memories first, then long-term memories. So while a person may not remember how to get to their local store, for example, they may still remember the name of their favorite sports team or a childhood hobby.
“[I was surprised by] the things they do remember even right near the end. My grandpa always remembered his love of ballet,” Frances H. said.
3. One thing people with Alzheimer’s disease often remember is music.
While memories like family members’ names and processes for doing basic tasks fade away, music often stays. This is because areas of the brain linked to memories of music tend to remain unaffected by Alzheimer’s disease. As a result, music therapy may be recommended to help recall memories, engage the brain, connect with loved ones and manage stress.
“[I was surprised] that music/songs/hymns are retained for most of our life. Why is that?” Cindy N. said.
4. While Alzheimer’s disease can progress gradually, sometimes it advances quickly.
As time goes on, the disease does get worse; however, not everyone advances at the same rate. Some factors can cause a rapid progression include infection, reaction to medications, depression and additional neurological conditions.
“[I was surprised] how fast they [could] go downhill. My grandma had almost rapid onset Alzheimer’s after her last fall,” Allison M. said. “She spent months in the hospital before being transferred to a nursing home. She was vocal and knew family members for a year or two after. She regressed and couldn’t remember anyone’s name or relation to her.”
5. Alzheimer’s disease is one of several different types of dementia.
Dementia is actually an umbrella term for several different types of conditions that cause memory and cognitive decline. Alzheimer’s disease is the most common at 60 to 80 percent of cases, followed by vascular dementia. It can be difficult to distinguish between some of the different types of dementia because symptoms overlap, and there is no singular dementia “test.”
“[I was surprised] that there are different kinds and that you can’t clearly diagnose it,” Lesa B. said.
6. People with Alzheimer’s disease have a greater risk of seizures.
Ten to 26 percent of people with Alzheimer’s disease experience some form of seizure, according to research, and their risk of seizure is higher than the general population — two to six times higher. Scientists believe this is caused by the accumulation of the proteins in the brain that cause Alzheimer’s, which may also cause nerve cells to fire abnormally, resulting in seizures.
“I was not aware that as Alzheimer’s progresses, seizures can develop,” Bethany S. said. “My mom went from walking and talking to using a wheelchair two months after the seizure.”
7. Assisted living facilities can be expensive.
If you haven’t looked into the cost of facilities that care for people with dementia before your loved one’s diagnosis, you may be in for a surprise. In the U.S., the average cost for long-term care (as of 2016) is $6,844 per month for a semi-private room in a nursing home, $3,628 per month for care in an assisted living facility and $20.50 an hour for a health aide. Make sure you’re aware of all the resources available to help you pay for your loved one’s care.
Peg S. said she was surprised by the “extreme cost” of nursing home care.
8. Sometimes, people with Alzheimer’s seem to become warmer and more empathic.
It’s well-documented that Alzheimer’s can lead to irritability and agitation. However, some people find their loved one appears to become sweeter and warmer. A 2013 study found that people with Alzheimer’s disease have a high level of “emotional contagion,” or the ability to mimic other people’s emotions. As the disease destroys more brain cells, this ability may get stronger, meaning they could become more sensitive to the people around them and pick up on their behaviors.
“My grandfather was rather gruff (but lovable) before he was diagnosed. Once he got to a particular stage in his illness he lost all that. He was having the time of his life. My son was born around this time and although he loved all his grandchildren, his great-grandchildren had a totally different experience with him,” Carla L. explained. “They got the fun loving side of him. The side of him that liked to get down on the floor and play with them. … All his worries and cares [seemed to] just melt away during that five-year period.”
9. It’s important to get in the mindset of a person with Alzheimer’s disease.
Loved ones and caregivers can observe what Alzheimer’s looks like on the outside, but understanding what’s going on inside their mind is crucial. For example, experts recommend going along with their reality rather than insisting on “the truth” since reminding them about emotionally distressing facts can cause more confusion and pain. Having empathy for the challenging symptoms they’re experiencing makes us all better at giving support.
“After watching an Alzheimer’s documentary on Netflix I had a better understanding of the pain, confusion and torture they lived every day,” Lindsey L. said. “It made the difficult days easier [for me] to get through, because I felt I had a glimpse into what they were going through.”
10. An Alzheimer’s diagnosis doesn’t mean your relationship with your loved one is over.
Of course it’s painful when a loved one with Alzheimer’s no longer remembers who you are and is no longer able to do the things they used to. Every person with Alzheimer’s disease is different and can be affected in unique ways, so it’s impossible to predict what kind of journey you and your loved one will experience. However, though your relationship may change, Alzheimer’s disease doesn’t mean it has to end. Experts agree people at all stages of dementia still have the capacity to enjoy life, and there are things you can do to “reach” them and bring them comfort like visits, music, art and pets.
“I naively expected [my friend with Alzheimer’s disease] would be sad all the time,” Cat P. said. “I don’t mean to diminish the practical challenges her memory loss causes her and her wife. I was just surprised by the fact that we can continue to develop a deeper relationship, and that she’s so fun to be around, even though she doesn’t remember my name.”