What is an Alzheimer's Disease Survivor?
An Alzheimer's Survivor is a person who is living and thriving with Alzheimer's Disease.
The Alzheimer's Association's research documents that there are 6.9 million Americans diagnosed with Alzheimer's Disease in the US today. Another 7.5 million are diagnosed and living with Mild Cognitive Impairment (early Alzheimer's). That is 14.4 million Americans surviving and thriving despite experiencing memory loss.
Another 7 – 10 million people are living with undiagnosed Alzheimer's Disease in the US. Alzheimer's Disease International reports that another 41 million undiagnosed people are living with Alzheimer's Disease around the globe.
Where are they?
You see them out and about every day. They are in the grocery store, the bank, at church, in temples, in synagogues, sporting events, community events, at the gym, walking around the block, and at restaurants along with everyone else. Alzheimer's Survivors live in the community just like you and me. You would not notice that they are experiencing memory loss unless you spent time talking with them or are in the advanced stages.
Alzheimer's Disease usually takes 15 – 30 years to develop and become noticeable.
Most Alzheimer's Survivors live in private homes with a spouse, child, sibling, or another family member or in an Independent Living Community. Alzheimer's Patients do not enter Assisted Living Programs until they are in the later stages of Alzheimer's Disease.
Caregivers
When most people think of an Alzheimer's Survivor, they only think about the people diagnosed with Alzheimer's Disease. An Alzheimer's Survivor is also someone who is a Caregiver of a person living with Alzheimer's Disease.
According to the Family Caregiver Alliance, about 15.7 million unpaid adult family caregivers care for someone who has Alzheimer's Disease at any given moment [Alzheimer's Association. (2015). 2015 Alzheimer's Disease Facts and Figures]. It is estimated that each Alzheimer's patient has 7.1 different caregivers in their lifetime. This number is expected to explode before 2030.
Each one of those caregivers is affected by Alzheimer's Disease just as much as a person diagnosed with Alzheimer's Disease. Alzheimer's Caregivers are Alzheimer's Survivors. Most of us are multi-generational Survivors.
Here are a handful of Caregiver statistics from the Alzheimer's Association:
Sex/gender - Approximately two-thirds of dementia caregivers are women.
Race/ethnicity - Two-thirds of caregivers are White, 10% are Black, 8% are Hispanic, and 5% are Asian American. The remaining 10% represent a variety of other racial/ethnic groups.
Living status - Most caregivers (66%) live with the person with dementia in the community. Over 60% of caregivers are married, living with a partner or in a long-term relationship.
Caring for parents - Over half of caregivers are assisting a parent or in-law with dementia. Approximately one-quarter of dementia caregivers are "sandwich generation" caregivers — meaning that they care not only for an aging parent but also for at least one child.
Among primary caregivers (individuals who indicate having the most responsibility for helping their relatives) of people with dementia, over half take care of their parents.
Income - Forty-one percent of caregivers have a household income of $50,000 or less.
Education - Approximately 40% of dementia caregivers have a college degree or more.
Age - About 30% of caregivers are age 65 or older. Twenty-three percent of caregivers ages 18 to 49 help someone with dementia, which is an increase of 7% between 2015 and 2021.
Caring for spouse - Approximately 10% of caregivers provide help to a spouse with Alzheimer's disease or another dementia.
According to the CDC, there are currently seven potential family caregivers per adult with dementia, but by 2030, there will only be four. In 2021, more than 11 million family members and friends in the US provided 16 billion hours of unpaid care to people with dementia, valued at more than $271.6 billion.
This is just a tiny snapshot of who these Alzheimer's Caregiver Survivors are. Future Blog and VLOG posts will go into much more depth.
Family
An Alzheimer's Survivor has a family member living with Alzheimer's Disease (diagnosed or undiagnosed). These Alzheimer's Survivors potentially share a common gene. Historically we thought that this gene was the key that opened the door to developing Alzheimer's Disease.
The Mayo Clinic tells us that the most common gene linked to Alzheimer's disease is a risk gene called apolipoprotein E (APOE).
APOE has three common forms:
APOE e2. This is the least common. It reduces the risk of Alzheimer's.
APOE e4. This gene is a little more common. It increases the risk of Alzheimer's. And it's linked to getting a worse form of the disease.
APOE e3. This most common gene doesn't seem to affect the risk of Alzheimer's.
The Mayo Clinic's research continues to tell us genes aren't the only factor. One copy of the APOE gene comes from the mother and another from the father. Having at least one APOE e4 gene doubles or triples the risk of getting Alzheimer's disease. Some people have two APOE e4 genes, one from each parent. Having two genes increases the risk of getting Alzheimer's disease even more, about eight- to twelvefold.
But not everyone who has one or even two APOE e4 genes gets Alzheimer's disease. And many people who don't have an APOE e4 gene get the disease. That suggests that the APOE e4 gene increases risk but is not a cause. There's likely more to getting Alzheimer's disease than just genes, such as lifestyle, race, ethnicity and environment.
As gene research goes on, researchers are finding links between late-onset Alzheimer's and several other genes. Examples include:
ABCA7. This gene seems to be linked to a greater risk of Alzheimer's disease. Researchers suspect that it may have something to do with the gene's role in how the body uses cholesterol.
CLU. This gene helps the brain clear the protein called amyloid-beta. Research suggests that an imbalance in the making and clearing of amyloid-beta is key to getting Alzheimer's disease.
CR1. Not enough of the protein this gene makes might cause chronic swelling and irritation, called inflammation, in the brain. Inflammation is another possible factor in getting Alzheimer's disease.
PICALM. This gene is linked to how brain nerve cells, called neurons, talk to each other. How they talk to each other is important for them to work well and to form memories.
PLD3. Scientists don't know much about the role of PLD3 in the brain. But it's recently been linked to a significantly increased risk of Alzheimer's disease.
TREM2. This gene affects how the brain responds to swelling and irritation, called inflammation. Rare changes in this gene are linked to an increased risk of Alzheimer's disease.
SORL1. Some forms of SORL1 on chromosome 11 appear to be linked to Alzheimer's disease.
As with APOE, these genes are risk factors, not causes.
In other words, having one of these changed genes might increase the risk of Alzheimer's. But not everyone who has a changed gene will get Alzheimer's disease.
Alzheimer's Survivors are:
People living and thriving despite having Alzheimer's Disease
Caregivers of someone with Alzheimer's Disease
Family members of someone with Alzheimer's Disease