What to Expect

Alzheimer's: What to Expect as the Disease Progresses

The course of Alzheimer’s disease can vary significantly with each individual. However, some changes are more typical and so you can reasonably expect to experience them. For example, the behavioral changes that usually dominate Stage I are joined with overriding physical problems in Stage III. Educating yourself to the flow of Alzheimer’s can help you communicate better with your loved one, your family and friends, and your loved one’s physician.

AD systematically destroys your loved one’s ability to use and rely on the critical skills and cognitive functions we develop from infancy through adulthood and take for granted, such as memory, orientation to time and place, judgment that allows us to discern right from wrong or safe from harmful, and problem solving. Your loved one will lose the instincts and memories that are needed to function safely and appropriately in all areas of living: driving, self-medicating, eating, writing, reading, cooking, interacting socially, cleaning, playing sports, grooming, and making financial or legal transactions. The list is endless. The loss is all encompassing.

What to Expect in the Three Stages of Alzheimer’s Disease

Use the box to the left of each symptom to check those that apply to your parent. Check all that apply, even if you cross over to another stage. Feel free to check off symptoms in more than one Stage. This information can help you create plans to keep your own mental, physical, and financial future intact. Taking this list to your loved one’s physician will provide her with an insider’s clear written account of your loved one’s behavior and abilities. The physician will be more able to prescribe appropriate lifestyle and medication changes that may help improve the entire family’s quality of life.

Changes Commonly Experienced in Stage I

In the early stages of AD, you can expect your loved one to show consistent, increasing memory loss, especially about recent events. You’ll notice minor difficulties in handling everyday matters, less interest in hobbies, some disorientation to time and place, and perhaps a need for prompting to keep appointments or continue an established personal care or household routine. If your loved one plays card games needing strong memory skills for counting cards and suits, that may become progressively more difficult. Because safe driving entails remembering how to start, brake, steer, reverse, park, read road signs, obey speed limits, and use landmarks and clues to get from one point to another, driving for a loved one with AD is always considered extremely dangerous for them and for all others on the roads and streets.

Although Stage 1 is called the ‘mild” stage, it is actually one of the most difficult periods of the disease process for you and your loved one. Most people in Stage I Alzheimer's Disease realize that they are losing control and fight back by denying the existence of the problem. Those around them also find it easier to deny the disease and attribute problems to “getting older.” These combined denials mean delayed diagnosis and treatment, often putting the person with AD at more risk. An early diagnosis by a board certified neurologist specializing in AD can result in your loved one receiving medications that may help slow the progression of the disease. Treatment at an early stage gives your loved one the potential to retain a higher functioning level for a longer period of time.

Short Term Memory Loss, Confusion, Focus

/_/ My loved one is beginning to forget recent experiences such as appointments made yesterday or last week.

/_/ They have trouble with new experiences such as a new telephone number or area code, or meeting someone new.

/_/ My loved one sometimes has trouble finding familiar places like her home or mine, the grocery store, and the doctor’s office.

Speech/Conversation

/_/ My loved one has had word finding problems and has filled in the sentence with a non-related word or made-up words that sound like gibberish to cover the difficulty.

/_/ My loved one seems to be talking less. (This may help avoid having to find words or making another embarrassing mistake.)

Initiative/Self Care

/_/ My loved one has difficulties with decisions on menus or selecting clothing to wear.

/_/ My loved one has begun to make inappropriate driving decisions.

/_/ My loved one has begun to make inappropriate financial decisions.

/_/ My loved one has lost interest in hobbies, friends, and other activities.

/_/ My loved one is not as well groomed as they used to be.

/_/ My loved one doesn’t appear to bathe as often as they used to.

Personality/Mood Changes

/_/ My loved one has mood swings than they had before AD.

/_/ My loved one makes excuses to avoid friends and family.

/_/ My loved one has become depressed.

/_/ My loved one has experienced a reversal in personalities from kind to nasty, outgoing to reclusive, gentle to sharp tongued, or other obvious and significant changes.

In the moderate stages of AD, you’ll notice significant memory loss. The AD patient will have retained fewer and fewer memories, will be more severely disorientated about time and place, will have great difficulty in problem solving, and will be unable to handle social relationships or function independently except for simple tasks. Your loved one will need an increasing level of assistance with dressing, grooming, preparing meals, taking medications, handling most household activities, driving, or making sound decisions regarding personal safety and finance.
Changes Commonly Experienced in Stage II

Memory and cognitive ability continue to deteriorate in Stage II Alzheimer's Disease, which make supervision and assistance a primary need. Preparations for this stage include considerations for 24-hour assistance, transportation, housing, financial and legal matters, and long-term care.

Medical assistance and caregiver respite are mandatory for your loved one’s safety and yours, and to control your quality of life.

Increased Confusion:

/_/ My loved one has difficulty remembering to lock the door.

/_/ My loved one cannot remember how to call me if they need help.

/_/ My loved one cannot formulate complete thoughts and sentences.

/_/ My loved one cannot read.

/_/ My loved one may mix up identities or forget names and identities (daughter, son, grandchild, friends, and deceased relatives).

/_/ My parent doesn’t recognize or remember the use of objects like a chair or bed.

/_/ My loved one shows frustration at not being able to understand or at not being understood.

Speech/Actions

/_/ My loved one repeats questions or statements many times.

/_/ My loved one makes repetitive motions.

/_/ My loved one paces in circles or wanders from room to room.

/_/ My loved one often becomes unmanageable in the afternoons or evenings with verbal outbursts or physical activities such as masturbating or disrobing in public or running away.

/_/ My loved one makes up stories to fill in memory gaps.

Hygiene Changes

/_/ My loved one refuses to bathe or becomes fearful and agitated when bathed.

/_/ My loved one wants to wear the same pieces of clothing for extended periods of time without washing them.

/_/ My loved one is incontinent.

Sleep/Paranoia/Fear

/_/ My loved one sometimes or always sleeps during the day and stays awake at night.

/_/ My loved one has accused us of trying to kill her or stealing her money.

/_/ My loved one is sometimes aggressive or combative and has tried to kick, hit, scratch, or bite other people.

Safety Risks

/_/ My loved one lives alone and gets lost when they goes outside the home.

/_/ My loved one no longer understands what poison is or does.

/_/ My loved one is unsure of themself on stairs or balconies.

/_/ My loved one’s balance is off and he is at risk for a trip or fall.

/_/ My loved one can no longer dial my number on the phone. (Try this test: hand your loved one the telephone and say, “Dial my number.”)

/_/ My loved one could no longer evacuate in a fire.

/_/ My loved one could no longer remember how to call 911 in an emergency.

At the more severe levels of impairment, your loved one may not remember you, your siblings, or a spouse. It will no longer be safe to leave your loved one alone. Your loved one will require twenty-four-hour supervision and total assistance with all activities of daily living such as eating, bathing, dressing, and toileting.
Changes Commonly Experienced in Stage III

Stage III is also known as “end-stage” Alzheimer’s, because it signifies the final years of the disease. At the end of this stage, your loved one will pass away. Assistance from a counselor at your local Alzheimer’s organization and hospice, and a physician specializing in Alzheimer’s disease and related dementias can help you and your loved one enormously during this very difficult time.

Assistance

/_/ My loved one needs total assistance with transferring from bed to chair, eating, walking, and every activity of daily living.

/_/ My loved one has difficulty swallowing.

/_/ My loved one refuses to eat.

Memory

/_/ My loved one no longer recognizes himself or family members.

Speech

/_/ My loved one rarely or never communicates.

Body and Functions

/_/ My loved one sleeps most of the time.

/_/ My loved one has had a significant weight loss.

/_/ My loved one’s skin bruises or tears easily

/_/ My loved one is completely incontinent of bowel and bladder.

One of the results of society’s continuously expanding Alzheimer’s knowledge is that AD is a long-term disease. Patients may survive as long as twenty years from diagnosis to death—meaning you may find yourself in the position of caregiver for two years or two decades. Caring for a loved one with dementia is considered one of the most difficult jobs in the caregiving spectrum. The financial losses, loss of quality of life, and loss of self make it vital to get help.

Ongoing support and caregiver education can help avoid or minimize the effects of depression and loss of quality of life by supplying you with the information you need to understand the illness and make informed decisions.