If you have already made an attempt to look for information about Alzheimer’s disease, you may have realized that there is an immense amount of literature available in books and on websites. It can become very overwhelming! This overview is meant to give you some basic facts as a place to start, and to provide various resources that can provide more information.
Overview & Facts: Alzheimer’s disease is the most common cause of dementia (it accounts for 50% of dementia cases). Other causes of dementia include strokes and Parkinson’s disease or there may be a combination of causes. Alzheimer’s is an irreversible condition and is marked by declining memory and thought processes. Although we are not yet sure about the cause of this disease, you may hear about plaques and tangles, which are found in the brains of those with Alzheimer’s. Most cases of Alzheimer’s disease occur in those over age 65, but younger people can get “early onset” Alzheimer’s, which tends to be a faster progressing form of the disease.
Signs & Symptoms: Just as no two older adults are exactly alike, the course of Alzheimer’s disease in any two people can look quite different. However, there are many common patterns in the signs and symptoms that accompany the progression of the disease. Before listing those, we must emphasize that if you are at all suspicious that your loved one may be showing signs or symptoms of Alzheimer’s it is vital that you encourage or arrange a complete medical evaluation for them by his or her physician. If Alzheimer’s is suspected, early management (discussed below) is important. However, some symptoms that are indicative of Alzheimer’s disease could actually be caused by something else, and an evaluation will explore this and rule out other possible causes of symptoms.
Many characterize the progression of Alzheimer’s disease using the following general terms:
- early-stage (lasting approximately 2-4 years)
- mid-stage (2-4 years)
- late-stage (approximately 3 years)
The Alzheimer’s Association (www.alz.org) more specifically lists these 7 stages of Alzheimer’s disease. Please remember that your loved one may not go through the same stages, show the same symptoms, or even progress through the disease at the same rate. However, it is comforting to some who give care to know what they might expect as their loved one lives with the disease.
Stage 1: No impairments evident through testing by a medical professional
Stage 2: Very mild cognitive impairment (might be associated with “normal”
aging). The person may notice him or herself forgetting some things (e.g. of names, where he/she put the car keys), but others do not notice. This stage of impairment does not show up through testing by a medical professional.
Stage 3: Mild cognitive impairment (may result in a diagnosis of early-stage
Alzheimer’s for some). Others may begin to notice that the person is
having difficulty in tasks such as remembering the name of a person they
just met, performing work duties, or misplacing or losing something
important and valuable. Medical evaluation will be able to
pick up on this stage.
Stage 4: Moderate cognitive impairment (Early-Stage Alzheimer’s)
Decreasing ability to remember current events, difficulty planning
complex events such as managing personal finances, possible withdrawal from social situations that are perceived as challenging. At this stage, your loved one may begin asking the same questions over and over without realizing it or get lost while driving in areas that were once familiar. Medical evaluation can clearly identify these deficiencies.
Stage 5: Moderately severe cognitive impairment (mid-stage Alzheimer’s)
Those at this stage may have difficulty remembering personal
information such as their address or phone number and have problems
identifying the date, day of the week or season. However, those in Stage 5 usually can remember their own name, names of their children and they can perform activities of daily living (such as eating and using the toilet) independently. Safety concerns are that those at this stage may begin to show more forgetfulness – a dangerous issue when it comes to
wandering or leaving the stove on.
Stage 6: Severe cognitive impairment (mid-stage Alzheimer’s)
The memory problems mentioned in Stage 5 continue to decline and
personality changes such as suspiciousness, hallucinations and repetitive
behaviors may begin to occur at this stage. Although your loved one will likely not remember the names of family members, he/she may be able to recognize familiar faces. At this stage, activities of daily living require assistance. Sleep disturbances and instances of urinary and fecal incontinence are more likely to occur. Wandering may become a significant safety concern at this stage.
Stage 7: Very severe cognitive impairment
In this final stage of the disease, your loved one may become unable to
react to his or her environment, communicate verbally, or control
movement. As with all symptoms, the extent to which those at this stage
lose these abilities ranges. Thus, it is possible that some are able to utter a
word or phrase. Others may be able to only grunt, or groan. Most, if not
all, will need assistance with activities of daily living. Swallowing may
become a problem, contributing to weight loss and many will become
bedridden at some point during this stage.
Diagnosis & Tests: A complete medical evaluation may include one or more of the following components: medical history (doctor talks with your loved one about his/her past and current health, medications, and symptoms to get a complete picture of what is happening), physical examination, neurological examination (including memory tests), brain scan (such as an MRI, CT, or EEG), blood and urine samples, and psychiatric evaluation.
Treatment & Care: Although Alzheimer’s disease is not curable (yet!), there are a number of treatments that may slow the progression of the impairments associated with the disease. Some medications that are currently being prescribed to slow memory loss are Reminyl, Exelon, and Aricept]. Not all of these medications work for every person with Alzheimer’s. It is important to communicate often with your loved one’s primary care provider about symptoms and side effects when medications have been prescribed. Some medications to treat specific symptoms are available as well and it is important to ask about side effects of any medication before your loved one starts taking it.
Vitamin E and Ginkgo Biloba may be suggested by the physician (or others) to help protect the brain from further damage by this disease. There is not yet have solid proof as to whether or not these remedies work, and they should be taken under a doctor’s supervision because of possible side effects (just because something is herbal and “natural” doesn’t mean it is “side effect free”).
Living & Managing: The first step in managing Alzheimer’s disease is to get your loved one to a doctor for a full evaluation. For many of those providing care for someone with this disease, seeing a physician is the first step to gathering information and gaining knowledge about Alzheimer’s and what to expect.
There is no doubt that you and your loved one will go through a range of emotions related to the realization that you are now living with this disease. It is not uncommon to have feelings of deep sadness, fear, anxiety, anger, and frustration.
Once you feel you are able, it will become important to assist your loved one with making plans for the future, which may include completing an advance directive, durable power of attorney, or will. Anticipating the care your loved one will need and desire as his/her disease progresses and how he/she will pay for these services will be an important part of the plan.
Of course, the most important aspect of caring for someone who has Alzheimer’s is providing a comfortable and safe environment. A number of adjustments and modifications can be made to maximize the quality of care you can provide to your loved one throughout the progression of the disease.
Alzheimer’s Association (www.alz.org)
This well written and easy to understand comprehensive site offers information to family members who are seeking to know more, to those interested in participating in Alzheimer’s research, and to those who want to join the fight to secure more research funding from the government. The site includes links to up-to-date research findings, upcoming events, and special programs that may be very useful to families (such as Safe Return).
National Institute on Aging - Alzheimer’s Disease Education & Referral Center (http://www.nia.nih.gov/alzheimers)
The “caregiving” link contains PDFs of referral lists and information pages for planning care. A unique link on this site contains Alzheimer’s information for children and teenagers.
Helpguide is a great website containing information about a variety of topics that may be helpful to older adults and those involved in their care. The Alzheimer’s/Dementia link contains articles about dementia and Alzheimer’s, the most common cause of dementia. It also provides more information about distinguishing between Alzheimer’s and normal cognitive decline. The information is well-organized and clear, providing summary boxes within the text for quick and easy reference.
An additional resource from Helpguide (http://www.helpguide.org/elder/alzheimers_care_planning.htm)
Provides a list of adjustments to the living environment of your loved one with Alzheimer’s as well as techniques for modifying the way you communicate with him/her to maintain your relationship.
Leeza’s Place (http://www.leezasplace.org/)
The Leeza Gibbons Memory Foundation, established by television personality Leeza Gibbons, is a friendly, family-oriented website with information for those who care for someone with a memory disorder. Leeza’s mother, according to the site, is in the final stages of Alzheimer’s disease and she promised her mother she would tell her story and educate others. The strength of this site is that Leeza shares her family’s story, which really personalizes the rest of the information offered.