Alzheimer’s Starts Before Symptoms Are Visible
Listening to an Alzheimer's diagnosis can feel overwhelming — especially when you learn that Alzheimer's can start decades before any symptoms are visible. Maybe your loved one had a few signs before they decided/agreed to see a doctor. On average, people experiencing thinking and memory problems wait for 2-3 years before seeing a doctor.
Until recently, the only way to diagnose Alzheimer's with complete accuracy was through a brain autopsy. Today, doctors can diagnose Alzheimer's with greater certainly using your medical history, neurological exams, brain and neck imaging (MRI, CT, PET), blood tests, as well as cognitive and functional assessments. Alzheimer's is notoriously difficult to diagnose because many other medical conditions can mimic it's symptoms. It's important to benchmark your loved one's current health so you can recognize changes in the future, and respond appropriately.
Is An Alzheimer's Diagnosis An Emergency?
Getting an Alzheimer’s diagnosis can be confusing. Everyone knows how serious Alzheimer's is, but hearing your doctor say things like, “See you in 6 months,” or “Let’s see what happens,” can sometimes make it feel minor. Isn’t Alzheimer’s serious? Should you be DOING something?
Alzheimer’s is a serious, progressive brain disease. As of this writing, no one knows what exactly causes it, or how to cure it. As with many other progressive conditions and diseases, body systems break down over time, compromise our immune systems, and leave us open to life-threatening illnesses such as pneumonia. That said, many people can live for many years after and Alzheimer's diagnosis. Since brains are like fingerprints (each one is unique) Alzheimer’s affects everyone differently. The good news? Of all types of dementia, Alzheimer’s has one of the slowest rates of progression.
Below is a simple overview of caregiving concerns at early, middle and late stage Alzheimer's disease.
EARLY STAGE ALZHEIMER’S (approximate duration 2-7 years)
Get Organized & Protect Health
Early stage Alzheimer's is the easiest stage. In the early stage, people with Alzheimer’s experience the least cognitive impairment, and the most independence. That means people with Alzheimer's are usually able to still do things without assistance, like getting together with friends, shopping, cooking, driving a car, and being home alone. For this reason it is the best time for caregivers to get organized.
Planning
The early stage of Alzheimer's is the best time to discuss the future and what you and your loved want to happen. These are difficult conversations to have, but they are impossible in the advanced stages of Alzheimer's.
Advanced Care Directives
Gather and/or prepare all advanced care documents. These documents ensure your loved one's wishes are carried out during a medical emergency, if they lose the capacity to make decisions for themselves, and following their death:
- Living Will
- Power of Attorney
- DNR or POLST
As Alzheimer’s progresses, your loved one’s ability to make crucial decisions, use good judgment, and sign important documents will decline. Don’t wait – make sure legal documents are signed and in place as soon as possible during the early stage.
Insurance Benefits And Coverage
Review your policies and confirm your benefits — especially related to Alzheimer's care:
- Primary Medical Insurance
- Supplementary Medical Insurance
- Medicare
- VA Benefits
- Long-Term Care Insurance
If you have Long-Term Care Insurance (LTC), contact the company directly to verify your benefits and get questions answered. Understand the activation process, including any waiting periods, necessary documentation, and facility requirements for assisted living or nursing homes in your area. Understand the reimbursement process — for instance, how to request reimbursement and when to expect it.
Interview paid caregivers and caregiving agencies. Visit local assisted living residences and skilled nursing facilities. Create a “possibles list” of paid caregivers/agencies, local assisted living residences, and skilled nursing facilities before you need them.
Healthy Lifestyle Habits
Early stage Alzheimer's is the best time to establish or reinforce healthy lifestyle habits including regular exercise, eating nutrient-dense food, drinking water, managing medical care, and organizing medication. Healthy lifestyle habits are the simplest way to safeguard your loved one's health in all stages of Alzheimer’s, and reduce caregiving stress as the disease progresses. Gentle reminder: new habits take between 21-30 days to feel automatic.
MIDDLE STAGE ALZHEIMER’S (approximate duration 4-5 years)
Balancing Exhaustion, Loss of Independence and Disease Progression
Increased Caregiving Demands
Middle Stage Alzheimer’s is challenging for all concerned. As your loved one loses independence and becomes more dependent on you, your caregiving responsibilities will also increase. Healthy lifestyle habits established in the Early Stage (or before) will help you maintain quality of life (for both you and your loved one) as circumstances change, or your energy fluctuates.
Additional Caregiving
During this stage you may consider hiring additional, paid caregiving help. It's difficult for a single person to handle the increased demands of Alzheimer's caregiving in the middle stage. Costs depend on things like: where you live, how experienced the paid caregiver is, and whether or not you go through an agency. Many caregivers have a “minimum” of hours required.
Few adults want to have a stranger watch over them. Even adults with Alzheimer's. Be prepared for your loved one to resist hiring an additional caregiver. Stay strong. When it's time for caregiving help, it's helpful to think of it as necessary, not optional. While it may seem strange in the beginning, professional Alzheimer's caregiving can be very helpful. You might even learn a few things!
Paying for additional caregiving is expensive. Review your Long Term Care Insurance Policy to see if an outside, paid caregiver is reimbursable. While hiring an additional caregiver may help for a while, you may reach that point where (even with help) you are unable to continue caring for your loved one at home. Again, review your Long Term Care Insurance Policy to understand the requirements before you need to activate it. Gentle reminder: most Long Term Care Insurance Policies have a minimum 60-day waiting period before policy activation. Check with your Long Term Care Insurance agent or company at least three months before you need to activate your policy.
Additional Medication
The middle stage can sometimes include additional medications for anxiety and delusions (tranquilizers and anti-psychotics). While a sedative might seem preferable to resistant behavior, it can take time to get the dosage right. During this period, it's challenging to strike a balance between mitigating negative behavior and over-sedation. Research has shown that healthy lifestyle habits can diminish negative behavior before it starts, but more importantly, without medication or it's side effects.
If you and your doctor decide to give your loved one medications for anxiety and delusions (tranquilizers and anti-psychotics), review the side effects before treatment begins. Being ready for medication side effects can make it easier to recognize when your loved one is experiencing them.
Loss of Independence
Middle Stage Alzheimer’s can be the most dangerous. It is during this stage that many people fighting Alzheimer’s become combative, begin wandering, and test their caregivers with emotionally challenging behavior. Logic and reason no longer make sense to them. They often can’t express or understand their feelings, acting out in destructive ways. The transition from independence to can’t-be-left-alone-anymore becomes apparent in this stage.
Incontinence
Urinary and fecal incontinence can occur at this stage. An accident here and there can escalate quickly to incontinence. Maintaining personal hygiene is challenging. Gastrointestinal challenges in this stage around can be especially tricky and even become life-threatening (e.g., long term diarrhea or dehydration). Some medications side effects include incontinence. Ask your doctor if any of your loved one's medications can cause incontinence.
Delusions & Hallucinations
People with Alzheimer’s can hallucinate and have delusions in this stage. It can be benign (like thinking their wife is a sibling or parent) or it can be frightening (like seeing someone else’s face in the mirror).
LATE STAGE ALZHEIMER’S (approximate duration 1-2.5 years)
Team Caregiving
The last stage of Alzheimer’s often requires a team of caregivers. People fighting Alzheimer’s in this stage lose the ability to move (walk, sit up, smile, hold head up), the ability to speak and require assistance with all aspects of daily living. Total dependence on one family caregiver is unsustainable, as people in this stage often need care and/or monitoring 24 hours a day. For this reason, family caregivers often choose to transition their loved one to a care facility. The type of care facility depends on the needs of the person fighting Alzheimer’s and their financial means.
“Stages of Alzheimer’s & Dementia: Durations & Scales Used to Measure Progression: GDS, FAST & CDR”
Dementia Care Centra
“Global Deterioration Scale”
Alzheimer's Society Canada
“The Global Deterioration Scale for Assessment of Primary Degenerative Dementia”
Florida Healthcare Association
“Clinical Stages of Alzheimer's”
Fisher Center For Alzheimer's Research Foundation
“Stages And Behavior”
The Alzheimer's Association
