Alzheimer's Disease & 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
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 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|
Trouble remembering recent events or conversations, the month or day of the week
Asking the same question over and over or repeating stories
Loss of ability to manage finances, making mistakes in writing checks
Withdrawal from social situations and general apathy; trouble initiating an activity
Cooking and shopping become more difficult; pans may be left to burn on the stove, and food may be forgotten in the refrigerator
Poor judgment - difficulty making wise decisions; may be easily swayed by others
Tendency to lose things or forget where they are when they are "put away carefully"
May become disoriented in familiar surroundings or get lost easily
Driving ability is compromised; unfamiliar driving routes or driving in an unfamiliar place will prove difficult
Denial that anything is wrong
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:
Learning: The more you know about AD, the easier it will be for you as a caregiver. Learn as much as you can about the early and middle stages of AD?don't worry about the late stage yet. Finding other caregivers to talk to can also be a great way to learn about and make sense of your own experience. One of the most difficult things to learn is to differentiate between the disease and your loved one. Particularly in the early stage, caregivers may find themselves thinking, "He's doing this to spite me!" or "She is just being lazy." In these cases, the behavior that is upsetting to the caregiver is usually a result of the disease process, not an attempt by the person with AD to hurt or frustrate the caregiver.
Emotional Support: A diagnosis of AD can be a heart-wrenching experience for both the person diagnosed and the caregiver. The person with AD may not remember or may not admit to having the disease or ever being told they had Alzheimer's. Trying to convince them otherwise is fruitless and frustrating for the caregiver. The caregiver needs to get appropriate emotional support through counseling, a support group or other family members. The goal is to establish a system of emotional support that will grow and change with you as your caregiving role and the emotional challenges change. Depression is common in caregivers of people with AD and should be addressed.
Family Roles: As the disease progresses, it will be harder for the person with AD to fulfill the roles they have typically played in the family. For example, if he or she was the only driver in the family, it will be important for family members to find alternative means of transportation (e.g., learning how to drive, recruiting volunteer drivers from among family and friends, using public transportation or paratransit). If the person with AD customarily prepared all of the meals, now is the time for the caregiver to begin learning how to cook. If the person with AD was in charge of household finances, someone else will need to assume this role. Focusing on these issues early will allow the person with AD to help the caregiver prepare for the future.
Finances: AD can be a costly disease. It is important to begin mapping out strategies for meeting the increasing financial demands placed on the family as the disease progresses. Financial planning should include reviewing your insurance coverage, e.g., health, disability, long-term care. Be aware that Medicare does not pay for long-term care or custodial care. Medicaid, the safety net for those living on a limited income, does provide coverage for those who qualify. Health insurance counseling is available free to seniors. To locate help in your community, call the Eldercare Locator at (800) 677-1116 or HICAP at (800) 434-0222.
Legal: Eventually the person with AD will need help making medical decisions, financial decisions and in making all sorts of important personal decisions such as who will provide for their care. Legal documents should be completed as early as possible in the disease process, even prior to a diagnosis. Waiting too long may result in the person no longer being deemed capable of signing legal documents. A Power of Attorney for Finances and Power of Attorney for Healthcare (Advanced Health Care Directive) can ensure that the person with AD is cared for by trusted family members or friends. Without these documents, caregivers may have to petition for conservatorship through court proceedings in order to get the right to make decisions on behalf of the person with AD. The family may also lose access to bank accounts if a member is not co-named on the account(s). Clear legal documentation can help prevent someone from attempting to take advantage of or lay claim to financial resources for their personal gain. Free and low-cost legal services are available to seniors. See the resource section of this fact sheet for organizations that can help with legal issues.
|Middle-Stage Alzheimer's||Middle-Stage Caregiving|
Difficult behaviors emerge often, but not always. Common examples include:
Anger, suspicion, overreacting and para-noia (e.g., believing that family members are stealing money or a spouse is having an affair)
More repetition of questions or statements
Wandering or sundowning (i.e., restlessness or agitation in the late afternoon and evenings)
Fear of bathing
Eating problems, table manners decline
Involuntary leakage of urine (incontinence) or having urine "accidents"
Hoarding belongings, especially paper
Inappropriate sexual behavior
Violent behavior - hitting, shouting, arming themselves for protection
Will go from needing help choosing clothes and remembering to change clothes to needing help getting dressed
Will progress from needing reminders regarding personal care to needing help bathing, taking medication, brushing teeth, shaving, brushing hair, toileting, etc?
Increased difficulty with verbal expression and comprehension, particularly when trying to name items
Spatial problems (e.g., having trouble finding their way, sometimes even at home)
Loss of reading, writing and arithmetic abilities; difficulty following the story line of a television show
Loss of coordination often leading to shuffling feet or gait problems
Will need care or supervision?possibly for 24 hours a day
May lose the ability to recognize family and friends at times
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.
Dealing With Challenging Behaviors: We often use intuition to help us decide what to do. Unfortunately, dealing with Alzheimer's disease and other dementias is counter-intuitive; i.e., often the right
thing to do is exactly opposite of what seems like the right thing to do. (See FCA article: Ten Real-life Strategies for Dementia Caregiving.)
Emotional Support: People caring for loved ones with AD frequently feel isolated, and feelings of grief and loss surface as the person they are caring for changes (see FCA fact sheet, Caregiving and Ambiguous Loss). Getting emotional support from professionals, family, friends and/or a support group as well as taking periodic breaks from the responsibilities of caregiving is crucial to the mental and physical health of caregivers. Be sure to speak to your physician if you feel depressed or anxious.
Respite Care: Caregivers need a regular break or "respite" from providing care and assistance. Respite care includes in-home help (another family member, a neighbor, friend, hired caregiver, or volunteer caregiver), and out of home help (adult day care or a short stay in an assisted care facility). The "Family Care Navigator" on www.caregiver.org can help you locate the Area Agency on Aging, a source for your local community respite resources. (See FCA's fact sheet Community Care Options and Making Choices About Everyday Care to learn about programs that can help ease the demands placed on the caregiver.)
Safety: Creating a safe and comfortable environment is important. An occupational therapist or physical therapist can provide advice and help in making the home safer for both the caregiver and care recipient. Ask your physician, the local Alz-heimer's Association or the Area Agency on Aging for a referral to a professional who is experienced in home modification and assistive devices. For people with AD who are at risk of becoming lost outside of their home, the local police should be advised, and the person should register with the Alzheimer's Association's Safe Return program.
Medical Care: The person with AD will need ongoing medical care both for AD and for any other health problems that might arise. Over time the caregiver will be depended upon to help provide the status update to medical staff. Make sure there is a release of information noted in the medical chart of the patient so that the physician can speak freely with you. It is important to develop a positive relationship with the physician(s) and other health care professionals. You will need them to understand your role as the caregiver, listen to your input and work with you as a team member in providing appropriate medical care.
The stress of caregiving can affect your health. Be sure to take care of yourself by getting regular medical care for yourself. If you need to be hospitalized or need time off from your caregiving duties, emergency respite care can be arranged. A caregiver whose health is seriously affected may need to look at alternative options for a loved one, such as a residential facility.
Planning for the Future: Many caregivers wish to keep their loved one at home for as long as possible. However, if more care?or a different type of care?is needed than what can be provided at home, residential care is often then next best option. Many assisted care facilities have programs specifically designed for individuals with dementia. Hiring in-home help is an alternative to relocating your loved one to a care facility. (For more information about these next steps, see FCA's fact sheets, Out-of-Home Care Options and Hiring In-Home Help.)
|Late-Stage Alzheimer's||Late-Stage Caregiving|
Loss of ability to communicate
Inability to recognize people, places and objects
Requires full assistance with all personal care activities
Loses ability to walk
Loses ability to smile
Muscles may become contracted
May lose ability to swallow
Seizures may occur
Majority of time spent sleeping
May exhibit a need to suck on items
Incontinence of both bowel and bladder
Placement: Families caring for a loved one with end-stage Alzheimer's should give thoughtful consideration to placement in a skilled nursing facility or dementia care facility, where adequate management and supervision can be provided.
Hospice: Hospice services are designed to support individuals at the end of life. Services may include support groups, visiting nurses, pain management and home care. Hospice services are usually arranged through the treating physician, and are usually not available until the physician anticipates that a person has less than six months to live. Several organizations specialize in helping families deal with the challenges involved in end-of-life care. (See FCA's fact
sheet, Making Choices About Everyday Care and the end-of-life fact sheets, including Holding on and Letting Go; refer to the resource section at the end of this fact sheet for more information.)
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
785 Market Street, Suite 750
San Francisco, CA 94103
Web Site: www.caregiver.org
E-mail: [email protected]
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
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.
For residents of the greater San Francisco Bay Area, 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, grants, professional education and training, and AFA Teens.
An Alzheimer's Social Network, provided by The Fisher Center Foundation, provides a fun, personal environment for families, friends, and medical professionals to chat, post messages and favorite links, and view forums, blogs, pictures and videos.
California Alzheimer's Disease Centers
The CADCs set the standard to improve Alzheimer's Disease(AD) health care delivery, provide specialized training and education to health care professionals and others, and work to advance the diagnosis and treatment of AD.
SF Bay Area CADC's include:
UC Davis Alzheimer's Disease Research Center
Stanford/VA Palo Alto CADC
UCSF Memory & Aging Center
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.
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