Alzheimer’s Disease and Caregiving
Alzheimer's disease (AD) is a condition that causes abnormal changes in the brain mainly affecting memory and other mental abilities. Alzheimer's is a disease, not a normal part of aging. Loss of memory is the usual first symptom. As the disease progresses, the loss of reasoning ability, language, decision-making ability, judgment and other critical skills make navigating day-to-day living impossible without help from others, most often a family member or friend. Sometimes, but not always, difficult changes in personality and behavior occur.
Alzheimer's disease poses real challenges for both the person diagnosed with AD and to those who assume caregiving responsibilities. This does not mean that there will no longer be times of joy, shared laughter and companionship. AD often develops gradually, offering time to adjust to the diagnosis, plan ahead, and spend quality time together.
Nearly 15 million Americans provide unpaid care to a person living with Alzheimer's disease or another dementia (Alzheimer's Association 2011 Facts & Figures). Dr. Alois Alzheimer, a German psychiatrist and neuropathologist is credited with identifying the first published case of "presenile dementia" in 1907, a condition that is now called Alzheimer's disease.
Alzheimer's is the most common form of dementia in older adults. The words "Alzheimer's" and "dementia" are often used interchangeably, but they are not the same. "Dementia" is a term that means a person is no longer able to function on their own because of a lasting impairment of multiple mental abilities affecting memory, attention, and reasoning. Dementia can be caused by many different medical conditions, such as a severe head injury or major stroke. Other common dementias are Lewy body dementia, Frontotemporal dementia, vascular dementia, and Parkinson's disease dementia (see FCA's fact sheet, Is This Dementia and What Does It Mean?).
Although the cause and progression of AD are not fully understood, increasing evidence shows that the first changes in the brain happen as much as 15 years before symptoms of dementia are exhibited by the person with AD. Certain kinds of brain scans can detect these changes. However, this work is not yet advanced enough for it to be of practical use in predicting who will later develop Alzheimer's disease.
The prevention of Alzheimer's disease is a popular topic in the media. A number of non-medical, life-style practices are recommended for possible prevention, a healthy way to manage the disease, and general age-related well-being. There is evidence, but no documented proof, that mental stimulation (brain games), exercise (like walking, swimming, yoga), social activities, and a healthy diet (fruit, vegetables and foods high in anti-oxidants) may help.
However, there is a great deal of evidence that small strokes are common in people with Alzheimer's disease which only make AD symptoms worse. Given what we know about stroke prevention, maintaining healthy blood pressure, avoiding diabetes or managing it well, keeping cholesterol down, and not smoking are four key things you can do to lower your risk.
This disease can appear as young as age 30, but is typically diagnosed after age 60, and risk of having the disease increases with age. By age 90 as much as 40% of the population may be affected. The genetics of AD are complex and knowledge is changing rapidly. Except for a small percent of families where a single gene causes the disease, having a family member with AD increases your risk only moderately. Alzheimer's disease is reported to be the sixth leading cause of death in the U.S.
People with AD may show symptoms of the disease three to five years before diagnosis. This period, when changes are present but the full-blown disease is absent, is called "mild cognitive impairment" or MCI. It is important to understand that not everyone with MCI goes on to develop AD. In fact, as many as 40-50% may never develop the disease. [See FCA fact sheet Mild Cognitive Impairment (MCI).] Early problems are often seen as normal changes due to aging, and only in retrospect do caregivers see that symptoms have been occurring for several years. Although on average, individuals survive four to eight years once diagnosed, living for 20 years is not all that unusual. For ease in understanding the changes that occur as the disease progresses, AD is generally divided into three stages: early, middle and late. However, the development of symptoms in an individual will differ from person to person as will the progression of symptoms.
Diagnosis and Science of Alzheimer's Disease
At present there is no single test that leads to a diagnosis of AD. The doctor first needs to establish that the memory loss is abnormal and that the pattern of symptoms fits AD. This sometimes requires specialized memory testing. The doctor then needs to rule out other illnesses that can cause the same symptoms. For example, similar symptoms can be caused by depression, malnutrition, vitamin deficiency, thyroid and other metabolic disorders, infections, side effects of medications, drug and alcohol abuse or other conditions. If the symptoms are typical of AD and no other cause is found, the diagnosis is made. In the hands of a skilled doctor this diagnosis is very accurate.
An evaluation for Alzheimer's disease is often requested by a family member or friend who notices memory problems or unusual behavior. The doctor typically begins the evaluation by taking a health history and performing a physical examination, as well as evaluating the patient's cognitive abilities (mental processes of perception, memory, judgment, and reasoning). This approach can help the doctor determine whether further testing is needed. A primary care physician may refer a patient for more extensive examination by a designated Alzheimer's diagnostic center, a neurologist, dementia or geriatric specialist. This examination will likely include a thorough medical evaluation and history, blood tests and brain scans (MRI or PET), followed by extensive neurological and neuropsychological assessments. A dementia evaluation should include interviews with family members or others who have close contact with the person being evaluated.
Rapid scientific progress is being made in identifying "biomarkers" of AD. Biomarkers are abnormal findings in blood, or cerebrospinal fluid (CSF), or on brain scans that are markers of AD. There is strong evidence that special tests of the CSF may be useful diagnostically. It is also possible now to see amyloid, a key abnormal protein in AD, in the brain using PET scans. As knowledge advances these tests may come into clinical use. Even now, however, it is clear that they will not be good enough to diagnose AD on their own. The diagnosis will still depend on a skilled and thorough evaluation.
Treatment After Diagnosis
No one fully understands what causes Alzheimer's disease yet, and there is currently no cure. Considerable progress has been made by researchers in recent years though, including the development of several medications for early-stage AD which can help improve cognitive functioning for awhile.
Three main drugs, donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl), have proved beneficial in improving memory, with limited side effects, usually gastro-intestinal upset. Exelon comes in a patch form which is helpful for people who have trouble swallowing pills. Unfortunately, these drugs are not effective for everyone, and their effectiveness is limited to the early and middle stages of AD. Another drug, memantine HCl (Namenda) also prescribed to help delay the progression of AD is often used in combination with the above drugs. A doctor may also prescribe medications to help reduce agitation, anxiety and unpredictable behavior, as well as to improve sleeping patterns and treat depression.
New medications are developed and tested regularly. People interested in participating in clinical trials should discuss the pros and cons with their physician and family. Information on clinical drug trials and other research is available from the Alzheimer's Disease Education and Referral Center (ADEAR) and FCA's Research Registry.
Regular care from a physician is important. Major, sudden changes in mental status can be the main symptom of important treatable conditions such as a urinary tract infection (UTI), pneumonia, or even a bone fracture. If the physician knows the patient, he or she can quickly recognize a change in mental status. But if they are presented with a demented patient that they have not seen in years it can be extremely difficult to know whether anything has changed and the proper workup may not be initiated.
Caring for Someone with Alzheimer's Disease
Alzheimer's disease is called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. An effective treatment will address the needs of the entire family. Caregivers must focus on their own needs, take time for their own health and get support and respite from caregiving regularly to be able to sustain their well-being during this caregiving journey. Emotional and practical support, counseling, resource information and educational programs about Alzheimer's disease all help a caregiver provide the best possible care for a loved one.
Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. As stated by one caregiver, "The care you give to yourself is the care you give to your loved one." It is often hard to see beyond the care tasks that await you each morning.
Through training, caregivers can learn how to manage challenging behaviors, improve communication skills and keep the person with Alzheimer's safe. Research shows that caregivers experience lower stress and better health when they learn skills through caregiver training and participate in a support group(s) (online or in person). Participation in these groups can allow caregivers to care for their loved one at home longer.
When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in their health.
Now it is time to take action, and take stock of the people, services and information that will help you provide care. The earlier you get support, the better.
The resources listed at the end of this fact sheet will help you locate local training classes and support groups. (See two of FCA's fact sheets: Caregiver's Guide to Understanding Dementia Behaviors, and Dementia, Caregiving and Controlling Frustration; as well as the article, Ten Real-life Strategies for Dementia Caregiving).
The role of the caregiver changes over time as the needs of the person with AD change. The following table offers a summary of the stages of AD, what kinds of behaviors to expect, and caregiving information and recommendations related to each stage of the disease.
|Early-Stage Alzheimer's||Early Stage Caregiving|
During the early stage, both the caregiver and the individual with AD will want to take time to adjust to the diagnosis and make plans for the future:
|Middle-Stage Alzheimer's||Middle-Stage Caregiving|
During the middle stage of AD, the caregiver's role will expand to full time. Keeping the person with AD safe will become a priority. Both the person with AD and the caregiver will need help and support.
|Late-Stage Alzheimer's||Late-Stage Caregiving|
Again, it's important to remember that the life-changing effects of Alzheimer's disease for both the person diagnosed with AD and those who assume caregiving responsibilities does not mean that there will no longer be times of joy. Although the challenges are real, the often slow progression of the disease offers time for shared laughter, intimacy, and social experiences. You will have opportunities to manage legal and financial issues in advance, and adjust to the diagnosis so that you can make the most of your time together.
National Center for Chronic Disease Prevention and Health Promotion, Division of Adult and Community Health, "Alzheimer's Disease." Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333, USA. June 2010.
2011 Alzheimer's Disease Facts & Figures: Includes a Special Report on Facts & Figures. Alzheimer's & Dementia, Volume 7, Issue 2.: The Journal of the Alzheimer's Association. March 2011.
National Center for Biotechnology Information, U.S. National Library of Medicine, Bethesda, MD, 20894 USA http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001767/
Alzheimer's: A Love Story, Ann Davidson, (1997). Carol Publishing, 120 Enterprise Avenue, Seacaucus, NJ 07094.
Learning to Speak Alzheimer's, Joanne Koenig Coste (2003). Mariner Books - Houghton & Mifflin Co., New York, NY 10003.
The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems, (2008) P. Murali Doraiswamy M.D., Lisa P., M.S.W. Gwyther, Tina Adler. 2008 Macmillan.
The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, Nancy Mace and Peter Rabins, Revised Edition (2001). The Johns Hopkins University Press, 2715 N. Charles Street, Baltimore, MD, 21218.
The Best Friends Approach to Alzheimer's Care, Virginia Bell and David Troxel (1997). Health Professions Press, P.O. Box 10624, Baltimore, MD 21285.
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy. Services include: comprehensive website for families and professionals; on-line and printed versions of fact sheets covering a wide range of topics related to caregiving and brain disorders.
FCA's National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers, as well as a toll-free call center for family caregivers and professionals nationwide. For San Francisco Bay Area residents, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, ALS, head injury, Parkinson's and other debilitating brain disorders that strike adults.
225 N. Michigan Ave., Floor 17
Chicago, IL 60601-7633
(312) 335-8700, (800) 272-3900
Provides education, support and service for people diagnosed with Alzheimer's disease and related conditions.
Alzheimer's Disease Education and Referral
P.O. Box 8250
Silver Spring, MD 20907
The center provides information about Alzheimer's disease, current research and clinical trials.
Alzheimer's Foundation of America
322 8th Ave., 7th Fl.
New York, NY 10001
The Alzheimer's Foundation of America offers support, respite grants, toll-free phone line for family caregivers who wish to speak with a social worker, online articles, professional education and training, and AFA Teens.
Alzheimer's Disease Research Centers Nationwide
California Alzheimer's Disease Centers
The CADC lists all of the Alzheimer's Disease Centers in the State of California.
www.eldercare.gov The Eldercare Locator helps older adults and their caregivers find local services including health insurance counseling, free and low-cost legal services and information for local Area Agencies on Aging.
The official US Government site for Medicare.
National Academy of Elder Law Attorneys
1604 N. Country Club Road
Tucson, AZ 85716
The National Academy of Elder Law Attorneys, Inc. (NAELA) Offers a directory of Elder Law Attorneys on their website.
Prepared and updated by Family Caregiver Alliance. Reviewed by Bruce R. Reed, Ph.D, Professor of Neurology, Associate Director, UC Davis Alzheimer's Disease Center. Funded by the Palo Alto Medical Center and private donors. © 2012 Family Caregiver Alliance. All rights reserved.