Early-Onset Alzheimer's: When a Caregiver Needs Care


Did you know that Alzheimer's disease can strike someone as early as their thirties?

The notorious, memory-robbing ailment is often associated with seniors, but people who are middle-aged and even young adults are not entirely immune to its affects.

According to a 2009 study conducted by the National Alliance for Caregiving and the American Association for Retired Persons (AARP), the average family caregiver is a 49-year-old woman. This means that caregivers who are looking after their elderly relatives may, themselves also be at risk for Alzheimer's disease.

But it's a small risk.

Jennifer Fitzpatrick, MSW, LCSW, an expert on aging and a consultant for the Alzheimer's Association, says that being diagnosed with Alzheimer's before age 65 does happen, but it's rare—only about 5 percent of people who suffer from the disease have what is called the "early-onset" form.

Signs and symptoms

Early-onset Alzheimer's disease shares many of its primary characteristics with Alzheimer's disease and other types of dementia.

Fitzpatrick says that caregivers who suspect that they, or a loved one, may have the disease should be on the lookout for things like consistent short-term memory loss, confusion, personality changes, poor judgment, or getting lost in familiar places.

Examples of specific symptoms include: a person who believes that they are a teenager, when in reality they are an adult, someone who cannot recall a conversation that they had a few minutes ago, or someone who forgets that they need to take their clothes off to take a shower.

While it's good to be aware of these symptoms, Fitzpatrick mentions that caregivers under 65 should be careful not to become alarmist about their risk of developing Alzheimer's disease. "It's important to understand what normal aging is. Tip-of-the-tongue moments and forgetting your keys every once in a while is normal. This disease is in the media so much that when people have normal aging symptoms, they worry—most of the time for no reason," she says.

Fitzpatrick also points out that dementia and Alzheimer's are not the same thing. Alzheimer's is a specific type of dementia. Dementia itself can be caused by many different things, from vitamin deficiencies, to urinary tract infections, to mini-strokes.

Age makes all the difference

The chief distinguisher of early-onset Alzheimer's is that it begins to affect people in their forties, fifties, and early sixties.

This is what makes the early-onset form of the disease so potentially devastating.

Fitzpatrick says that people who develop Alzheimer's during their middle-age years can find themselves (and their families) facing significant financial stress.

She points out that if the disease forces someone to retire prematurely, they not only lose out on potential wages during their prime earning years, but they also won't be finished contributing to their 401k, pension program, or other retirement plan. This means that they may have a hard time paying for future care.

Also, depending on how early the symptoms hit, an adult may not be finished raising their children, or taking care of their elderly parents. This situation can be rife with both financial and emotional strain as the grandparent-parent-child dynamic becomes disrupted.

According to Juliet Scott-Campbell, a nurse care manager for the Visiting Nurse Service of New York (VNSNY) CHOICE program, people who are the primary breadwinners for their household may also develop serious self-esteem and depression issues if Alzheimer's prematurely strips them of their role as a provider or caregiver.

Planning ahead

Handling an early-onset diagnosis can be tricky for a caregiver who is responsible to looking after an elderly loved one.

Getting a definitive diagnosis as soon as possible is vital. The sooner a family knows about an early-onset diagnosis, the sooner they can mobilize and begin to plan for the future.

One of the most important tasks to do post-diagnosis is to make sure that the person the caregiver was taking care of has someone new to look after their health and well-being.

It's also critical to get all relevant legal documents (Will and Living Trust, Power of Attorney, financial provisions for children who are still minors) in order for both the person suffering from early-onset, and the person they were caring for. Fitzpatrick recommends having discussions about where the person diagnosed with early-onset Alzheimer's would prefer to live if caring for them gets to be too much for family members.

Early-onset Alzheimer's can be particularly frustrating because it can begin to affect a person who is otherwise healthy. Many people, when they are first told that they have early-onset Alzheimer's, remain in denial, refusing to acknowledge the disease and its consequences.

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Wow, thanks a lot. i do not have the part F that is the mnl medicare insurance for I just have A & B. However, thanks for advice about the insurance when hubby gets ready to retire. I know that Cobra crap want n arm & leg. I was told to check out Blue Cross Blue Shield in Ga.
As for mnl leaving that ain't happen. I already said that i would try to take care of her until it got like she needed an I.V and stuff. Of course, I have helped her when she had a cathered in her and that was a mess for she had to keep it in and kept clean for a week. Guess who was the lucky one that got to clean the tushy area? That right, lucky me! The tip on house sounds like a good idea n I never thought of that either. As for property stuff n her Will, it is in my hubby, me and her Neice if she was to pass away. We are hoping that a NH will not be needed for they suppose to from what I heard do better healthy wise if they can stay home. I got my five break n it helped a lot. so maybe I will quit whinny like a maybe and just suck it up for awhile. We will more than likely move back into the little ole house of ours if she does have to go to the NH.
I am sorry that you were not able to use your mom as an independent on taxes. Plus, only 2 times a break, I have no idea how you done it. I may be able to go to Florida to see my family when hubby is out from teaching which is in one week. Maybe in June when i get back from Atlanta Piedmont for my 10 yr post kidney transplant, yeah...As for now, I think I will start paying her meds separate and from ours so that I can keep receipts of her med cost just in case for future purposes. I have been putting it on my visa n we pay pay it later. We might try to put her on our taxes this year too. Thanks for the tips for I truly do appreciate them.
Very good article!
When people are caregivers, it increases stress: increased stress can cause dementia or Alzheimers-like symptoms, as well as other possibles mentioned above.
It is a tricky business to differentiate between them.
It is absolutely necessary to remove stressors from someone affected that way, no matter what the eventual diagnosis is, to optimize the persons's health so they can slow any disease process, and optimize their own abilities as long as they can, and to assist them to put their affairs in order while they still can.
All that is nearly impossible when care-giving for someone else.
Bottom line, it is important for caregivers to have back-up plans for moving the person[s] they are caregiving for, somewhere else, or into a facility, if/when the caregiver becomes unable to provide realistic, safe caregiving for themselves or others.
Moving the care-given Elder elsewhere, is one step to decreasing stress in the affected Caregiver, to help determine the actual condition. Keeping supportive people around the affected person, and keeping them in familiar environ at least long enough to determine diagnosis, is also important.

I know the main part of the article is about having your priorities in order for both the elderly that you are taking care of and as well for yourself if you were diagnose with early AD. However, it don't seem that simple. For you are using all their and mostly your own assest to take care of the elderly as the AD progressive. Where is all this $$ suppose to be coming from for ourselves if we become in this similar situation? Especially for those like us that have pre-existion conditions.

The article also mentions that, "Many people, when they are first told that they have early-onset Alzheimer's, remain in denial, refusing to acknowledge the disease and its consequences."
My mnl was diagnose with AD two years ago and still denies so, do they ever accept it? Would it make it any better for her or us if she did accept she AD or would it even really matter?

I hope I never get AD but, I know with my health record with Diabetes 1 over 35yrs, lupus sle and from taking transplant meds that I do have that possibility chance however, I know I don't need to worry about that for I have enough stress in my life.