This uncharacteristic interest in anything medical was further rekindled — just two nights ago — when I had dinner with a friend who has been a caregiver for one Alzheimer’s patient in Los Angeles for the past 5 years. Her story had no happy endings or miraculous cures… just a long, sad narrative of the ailing patient’s mental and physical deterioration… and the sadness and stress it has caused the family.
Although I cannot offer anything in terms of a “cure” or creative ways of alleviating the awful pain… I felt obliged to research and share all the information I could gather about this living death.
With the little knowledge, we can arm ourselves with nuggets of information that may prove useful if one of our loved ones is stricken with the disease. (Or – God forbid – if we ourselves become the victims.)
SYMPTOMS, STAGES AND COPING WITH ALZHEIMER’S DISEASE
Alzheimer’s disease is the most common form of dementia, a serious brain disorder that impacts daily living through memory loss and cognitive changes. Although not all memory loss indicates Alzheimer’s disease, one in ten people over 65 years of age, and over half of those over 85 have Alzheimer’s disease. Currently, 26 million people worldwide have this dementia, and over 15 million Americans will be affected by the year 2050.
Symptoms of Alzheimer’s disease usually develop slowly and gradually worsen over time, progressing from mild forgetfulness to widespread brain impairment. Chemical and structural changes in the brain slowly destroy the ability to create, remember, learn, reason, and relate to others. As critical cells die, drastic personality loss occurs and body systems fail.
WHO IS AT RISK OF ALZHEIMER’S DISEASE?
- The primary risk factors of Alzheimer’s are age, family history, and genetics. However, there are other risk factors that you can influence. Maintaining a healthy heart and avoiding high blood pressure, heart disease, stroke, diabetes, and high cholesterol can decrease the risk of Alzheimer’s. Watch your weight, avoid tobacco and excess alcohol, stay socially connected, and exercise both your body and mind.
- Early-onset Alzheimer’s affects patients under the age of 65. This relatively rare condition is seen more often in patients whose parents or grandparents developed Alzheimer’s disease at a young age, and is generally associated with three specific gene mutations (the APP gene found on chromosome 21, the PSI gene on chromosome 12, and the PS2 gene on chromosome 1).
For many people, detecting the first signs of memory problems in themselves or a loved one brings an immediate fear of Alzheimer’s disease. However, most people over 65 experience some level of forgetfulness. It is normal for age-related brain shrinkage to produce changes in processing speed, attention, and short term memory, creating so-called “senior moments.” Forgetfulness is merely inconvenient, though, and generally involves unimportant information. Understanding the significance of these age-related changes begins with knowing the difference between what is normal and what is an early symptom of Alzheimer’s.
|SIGNS OF NORMAL CHANGE VS. EARLY ALZHEIMER’S SYMPTOMS|
Early Alzheimer’s disease
|Can’t find your keys||Routinely place important items in odd places, such as keys in the fridge, wallet in the dishwasher|
|Search for casual names and words||Forget names of family members and common objects, or substitute words with inappropriate ones|
|Briefly forget conversation details||Frequently forget entire conversations|
|Feel the cold more||Dress regardless of the weather, wear several skirts on a warm day, or shorts in a snow storm|
|Can’t find a recipe||Can’t follow recipe directions|
|Forget to record a check||Can no longer manage checkbook, balance figures, solve problems, or think abstractly|
|Cancel a date with friends||Withdraw from usual interests and activities, sit in front of the TV for hours, sleep far more than usual|
|Make an occasional wrong turn||Get lost in familiar places, don’t remember how you got there or how to get home|
|Feel occasionally sad||Experience rapid mood swings, from tears to rage, for no discernible reason|
WHAT ELSE CAN CAUSE ALZHEIMER’S SYMPTOMS?
Significant cognitive and memory loss are not symptoms of normal aging. However, these symptoms do not always indicate Alzheimer’s disease. Other conditions can also cause mental decline.
Symptoms that mimic early Alzheimer’s disease may result from:
- Central nervous system and other degenerative disorders, including head injuries, brain tumors, stroke, epilepsy, Pick’s Disease, Parkinson’s disease, Huntington’s disease.
- Metabolic ailments, such as hypothyroidism, hypoglycemia, malnutrition, vitamin deficiencies, dehydration, kidney or liver failure.
- Substance-induced conditions, such as drug interactions, medication side-effects, alcohol and drug abuse.
- Psychological factors, such as dementia syndrome, depression, emotional trauma, chronic stress, psychosis, chronic sleep deprivation, delirium.
- Infections, such as meningitis, encephalitis, and syphilis.
Since there is no single definitive medical test for identifying Alzheimer’s disease, arriving at the correct diagnosis can take time and patience. The most important step is to assess past and present functioning. Determining classic patterns can not only help your doctor eliminate other causes of Alzheimer’s symptoms, but also distinguish Alzheimer’s from other forms of dementia. Your doctor will gather family history information, order medical tests, and estimate your memory loss using a variety of assessments. To diagnose Alzheimer’s disease from your symptoms, a doctor will look for:
- Significant memory problems in immediate recall, short-term, or long-term memory.
- Significant thinking deficits in at least one of four areas: expressing or comprehending language; identifying familiar objects through the senses; poor coordination, gait, or muscle function; and the executive functions of planning, ordering, and making judgments.
- Decline severe enough to interfere with relationships and/or work performance.
- Symptoms that appear gradually and become steadily worse over time.
- Other causes to be ruled out – to ensure memory and cognitive symptoms are not the result of another medical condition or disease, such as Mild Cognitive Impairment.
HOW IS MILD COGNITIVE IMPAIRMENT DIFFERENT FROM ALZHEIMER’S?
Recent research examining Mild Cognitive Impairment (MCI) reveals biological changes identical to those seen in an Alzheimer’s brain. Considered by some to be an intermediate stage between normal aging and the onset of Alzheimer’s disease, MCI is characterized by persistent forgetfulness, but lacks many of the more debilitating symptoms of Alzheimer’s disease.
MCI often precedes the early stages of Alzheimer’s. In other cases, patients plateau at a relatively milder stage of decline, and are able to live independently with little help from others. Understanding how these conditions progress to dramatically different outcomes continues to be a source of scrutiny and study.
If you or a loved one is dealing with a diagnosis of Alzheimer’s, your doctor may have provided information on stages in the diagnosis. These stages can provide general guidelines for understanding the progression of Alzheimer’s symptoms and planning appropriate care. However, it is important to remember that each individual with Alzheimer’s progresses differently. Cognitive, physical, and functional phases often overlap, the time in each stage varies widely from patient to patient, and not everyone experiences all Alzheimer’s symptoms. Your doctor or local support groups can often provide firsthand information about the different Alzheimer’s stages and tips on handling them.
THE THREE STAGE ALZHEIMER’S DISEASE MODEL
|3 Stages of Alzheimer’s disease|
|Mild/Early||2-4yrs||Frequent recent memory loss, particularly of recent conversations and events. Repeated questions, some problems expressing and understanding language. Mild coordination problems: writing and using objects becomes difficult. Depression and apathy can occur, accompanied by mood swings. Need reminders for daily activities, and may have difficulty driving.|
|Moderate/Middle||2-10 yrs||Can no longer cover up problems. Pervasive and persistent memory loss, including forgetfulness about personal history and inability to recognize friends and family. Rambling speech, unusual reasoning, and confusion about current events, time, and place. More likely to become lost in familiar settings, experience sleep disturbances, and changes in mood and behavior, which can be aggravated by stress and change. May experience delusions, aggression, and uninhibited behavior. Mobility and coordination is affected by slowness, rigidity, and tremors. Need structure, reminders, and assistance with the activities of daily living.|
|Severe/Late||1-3+ yrs||Confused about past and present. Loss of ability to remember, communicate, or process information. Generally incapacitated with severe to total loss of verbal skills. Unable to care for self. Falls possible and immobility likely. Problems with swallowing, incontinence, and illness. Extreme problems with mood, behavior, hallucinations, and delirium. In this stage, the person will need round the clock intensive support and care.|
SAMPLE SEVEN STAGE MODEL OF ALZHEIMER’S DISEASE
In addition to the three stages of Alzheimer’s, your doctor may also use a diagnostic framework with five, six, or seven levels. Progression through these stages usually lasts from 8 to 10 years, but can sometimes stretch out as long as 20 years.
The seven stage Global Deterioration Scale, also known as the Reisberg Scale, includes the following dimensions:
- Stage 1 – No impairment. Memory and cognitive abilities appear normal.
- Stage 2 – Minimal Impairment/Normal Forgetfulness. Memory lapses and changes in thinking are rarely detected by friends, family, or medical personnel, especially as about half of all people over 65 begin noticing problems in concentration and word recall.
- Stage 3 – Early Confusional/Mild Cognitive Impairment. While subtle difficulties begin to impact function, the person may consciously or subconsciously try to cover up his or her problems. Expect to experience difficulty with retrieving words, planning, organization, misplacing objects, and forgetting recent learning, which can affect life at home and work. Depression and other changes in mood can also occur. Duration: 2 to 7 years.
- Stage 4 – Late Confusional/Mild Alzheimer’s. Problems handling finances result from mathematical challenges. Recent events and conversations are increasingly forgotten, although most people in this stage still know themselves and their family. Experience problems carrying out sequential tasks, including cooking, driving, ordering food at restaurants, and shopping. Often withdraw from social situations, become defensive, and deny problems. Accurate diagnosis of Alzheimer’s disease is possible at this stage. Lasts roughly 2 years.
- Stage 5 – Early Dementia/Moderate Alzheimer’s disease. Decline is more severe and requires assistance. No longer able to manage independently or unable to recall personal history details and contact information. Frequently disoriented regarding place and or time. People in this stage experience a severe decline in numerical abilities and judgment skills, which can leave them vulnerable to scams and at risk from safety issues. Basic daily living tasks like feeding and dressing require increased supervision. Duration: an average of 1.5 years.
- Stage 6 – Middle Dementia/Moderately Severe Alzheimer’s disease. Total lack of awareness of present events and inability to accurately remember the past. People in this stage progressively lose the ability to take care of daily living activities like dressing, toileting, and eatingbut are still able to respond to nonverbal stimuli, and communicate pleasure and pain via behavior. Agitation and hallucinations often show up in the late afternoon or evening. Dramatic personality changes such as wandering or suspicion of family members are common. Many can’t remember close family members, but know they are familiar. Lasts approximately 2.5 years.
- Stage 7 – Late or Severe Dementia and Failure to Thrive. In this final stage, speech becomes severely limited, as well as the ability to walk or sit. Total support around the clock is needed for all functions of daily living and care. Duration is impacted by quality of care and average length is 1 to 2.5 years.
An Alzheimer’s diagnosis is an enormous adjustment for both you and your loved ones. For many, the secrets to navigating this journey are learning, supporting, and loving. While there is currently no cure for Alzheimer’s disease, there are treatments available for the symptoms. These treatments cannot prevent Alzheimer’s from progressing but if symptoms are diagnosed early enough, they can be effective in delaying the onset of more debilitating symptoms. Early diagnosis can prolong independence and is the first step towards treatment, management, and living life fully.
IF YOUR SYMPTOMS HAVE BEEN DIAGNOSED AS ALZHEIMER’S
You may not know what to think if you’ve been diagnosed with Alzheimer’s. You may be furious that you have to deal with this, scared about what the future will bring, uncertain about how your memory will change- or all of these emotions at once. These feelings are all normal.
- Give yourself some time to adjust. As with any major change in life, don’t expect that you will smoothly snap into this new transition. You may feel alright for a while, and then suddenly feel stressed and overwhelmed again. Take time to adjust to this new transition.
- Reach out for support. Living with Alzheimer’s is not easy, but there is help in this journey. The more you reach out to others and get support, the more you will be able to cope with Alzheimer’s symptoms while continuing to enrich and find meaning in your life.
- Make your wishes known. While it’s not easy to think about, getting your finances in order and figuring out how you want your healthcare handled gives you power over your future. Talk with your family and loved ones and let them know what is important to you. Who do you trust to make decisions for you when you are no longer able to do so?
IF A LOVED ONE’S SYMPTOMS HAVE BEEN DIAGNOSED AS ALZHEIMER’S
If a family member or loved one has been diagnosed with Alzheimer’s, you will also be dealing with a host of emotions. You may be grieving for your loved one, especially if significant memory loss is already present. You may feel like you no longer know this person, as new behaviors and moods develop that are unlike the person you remember. You may start to become overwhelmed with the needs of your loved one, or even resentful that other family members won’t help enough.
- Learn as much as you can. Understanding what to expect will help you plan for care and transitions. Knowledge will help you both honor a loved one’s strengths and capabilities throughout each stage, and make sure you have the strength and resources to carry on.
- Don’t take on the caregiving journey alone. No matter how dedicated you are, at some point you will need some help in caregiving. No one can be awake and alert 24 hours a day. You have your own health and other obligations to consider. Having support in caregiving is key, whether it be from other family, in-home help, respite care, or making the decision to move your loved one to an assisted living or nursing home.