What does it mean when someone is said to have dementia? For some people, the word conjures up scary images of “crazy” behavior and loss of control. In fact, the word dementia describes a group of symptoms that includes short-term memory loss, confusion, the inability to problem-solve, the inability to complete multi-step activities such as preparing a meal or balancing a checkbook, and, sometimes, personality changes or unusual behavior.
Saying that someone has dementia does not offer information about why that person has these symptoms. Compare it to someone who has a fever: the person is ill from the fever, but the high temperature does not explain the cause or why this person is ill.
Does any loss of memory signify dementia? Isn’t memory loss a normal part of aging? We often hear that because someone is old, memory problems are “just natural” and are to be expected. But we know that serious memory loss is not a normal part of aging, and should not be ignored.
On the other hand, families might assume that a loved one’s noticeable loss of memory must be caused by Alzheimer’s disease. In many instances, Alzheimer’s is, in fact, the problem. But other conditions also can cause memory and cognitive problems severe enough to interfere with daily activities. These conditions can affect younger as well as older people. A clear diagnosis is needed.
Certain conditions can cause reversible dementias. These include medication interactions, depression, vitamin deficiencies or thyroid abnormalities. It is important that these conditions be identified early and treated appropriately so that symptoms can be improved.
The irreversible dementias are known as degenerative dementias, and Alzheimer’s disease is the most common. There are a number of other degenerative dementias, however, that may look like Alzheimer’s, but have distinct or different features which need special attention and different treatment. Reversible and irreversible dementias are described in more detail below.
The diagnosis of dementia requires a complete medical and neuropsychological evaluation. The process is first to determine if the person has a cognitive problem and how severe it is. The next step is to determine the cause in order to accurately recommend treatment and allow patients and caregivers to plan for the future.
A medical evaluation for dementia usually includes the following:
The process of diagnosing dementia has become more accurate in recent years, and specialists are able to analyze the large amount of data collected and determine if there is a problem, the severity, and, often, the cause of the dementia. Occasionally, there may be a combination of causes or it may take time to monitor the individual to be sure of a diagnosis. Determining whether the cause is a reversible or irreversible condition guides the treatment and care for the affected person and family.
Deteriorating intellectual capacity may be caused by a variety of diseases and disorders in older persons. An illness and/or a reaction to medication may cause a change in mental status. These are sometimes called “pseudodementias.” Detecting the underlying cause of changes through medical evaluation may lead to a determination that the cause is reversible or treatable. Examples of conditions that can cause reversible symptoms of dementia include:
Reactions to medications—Adverse drug reactions are one of the most common reasons older persons experience symptoms that mimic dementia. All medications, prescriptions, over-the-counter pills and herbal remedies should be monitored by a physician to reduce the possibility of side effects.
If reversible dementias are ruled out and it is determined that the person has a degenerative or irreversible dementia, it is important that families and medical personnel seek the cause of the problem. This will help ensure that the person affected receives proper medical care, and families can plan their caregiving and find appropriate support and resources.
The following are the most common degenerative dementias:
There are no cures for degenerative or irreversible dementias, so medical treatments focus on maximizing the individual’s cognitive and functional abilities. Specific treatments for dementia vary depending on the cause of the dementia. For patients with Alzheimer’s disease and Lewy Body disease, for example, medications are available to slow the rate of decline and improve memory function. These medications are known as cholinesterase inhibitors and seem to be effective for some patients. For patients with Alzheimer’s disease, a newer medication, which prevents the buildup of chemicals thought to contribute to memory loss, has also been developed. Treatment for vascular dementia includes controlling risk factors such as high blood pressure and high cholesterol. Additional medications are available to manage other symptoms associated with dementia, including sleep disorders, movement problems, depression, or behavioral symptoms such as irritability or agitation. Because treatments vary depending on the cause of dementia, an accurate diagnosis is critical.
Good communication with the primary care provider affects the well-being of the person with dementia as well as the well-being of the caregiver. Communicating your concerns clearly and describing the changes you may have observed will help guide the provider to investigate further. In some cases, you may find yourself “educating” medical staff about your loved one’s symptoms.
It is important that your concerns are taken seriously, and you are treated with respect and dignity. If you are not receiving the attention you need, you should communicate your concerns to the provider and request a referral to a resource in the community that specializes in the evaluation of people experiencing cognitive changes. The goal is to establish a partnership to both maintain the quality of health and to solve problems.
Establishing a good working relationship with the primary care physician helps ensure good care and ongoing support. A comprehensive medical work-up that rules out treatable conditions and provides information on current status offers a foundation for care planning, now and in the future.
An accurate diagnosis begins a process of education for caregivers and families so that needs can be met and resources located and put to use. Irreversible dementia requires a level of care that increases as the disease progresses. Through education and the use of available resources, families can learn new skills to handle shifting care needs.
Many families provide care at home for a person with dementia. While this can be an enriching and very rewarding experience, it can also be stressful. Studies have shown that caring for someone with a brain-impairing disorder can be more stressful than caring for someone with a physical impairment. It is essential that caregivers take the time to care for themselves physically and emotionally.
Support and assistance are very important throughout the months or years you are a caregiver. You will need respite from time to time—a break from caregiving demands. Help from friends, other family members or community agencies is invaluable so that you can continue to provide your loved one with good care without becoming exhausted, frustrated or simply burned out.
Safety-proofing the home, learning behavior management techniques and addressing legal and financial matters are important steps families can take to manage dementia, and resources are available to help. Many caregiver support groups–including some on the Internet–offer emotional and practical support. Caregivers may need to educate themselves about long-term care, and also to reach out in their communities to find the assistance they need. The list of resources below offers more information on where to start looking for help.
Every family is different. Whether care for someone with dementia is provided at home, in an assisted living center, an Alzheimer’s special care unit, or in a nursing home depends on family resources and patient needs. While placement in a facility is not uncommon in later stages of dementia, every family approaches the caregiving experience in a way that is best for them.
Research into the causes and treatments for dementia continues at a rapid pace. We all look forward to new developments that some day may postpone, cure or even prevent these debilitating disorders.
The Forgetting. Alzheimer’s: Portrait of an Epidemic, David Shenk, 2001, Random House, New York, NY.
Alzheimer’s Disease: Unraveling the Mystery, Anne Brown Rodgers, 2003, ADEAR (Alzheimer’s Disease Education & Referral Center, a service of the National Institute on Aging), Silver Spring, M.D.
Caregiving at Home, William Leahy, M.D., 2005, Hartman Publishing Inc. and William Leahy, M.D., 8529 Indian School Road NE, Albuquerque, NM 87112, (505) 291-1274.
Fact Sheets are listed here: https://caregiver.org/fact-sheets.
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
(800) 445-8106 toll free
E-mail: [email protected]
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy.
National Center on Caregiving offers information on current social, public policy and caregiving issues, provides assistance in the development of public and private programs for caregivers, and assists caregivers nationwide in locating resources in their communities.
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 disease, and other debilitating health conditions that strike adults.
Administration on Aging
Phone: (800) 677-1116
The Eldercare Locator helps older adults and their caregivers find local services including health insurance counseling, free and low-cost legal services and contact information for Area Agencies on Aging (AAAs).
Designed by the National Council on Aging, this website enables you to complete a questionnaire to find federal, state, and local programs that you might be eligible for and how to apply.
ADEAR (Alzheimer’s Disease Education & Referral Center)
American Stroke Association
(Division of American Heart Association)
Huntington’s Disease Society of America
National Parkinson Foundation
This Fact Sheet was written by Jean Coleman, R.N., M.S., N.P., and Carole Bibeau, R.N., M.S., University of California, Davis- Alzheimer’s Disease Center; Cynthia Barton, RN, M.S., GNP, Rosalie Gearhart, RN, M.S., and Jennifer Merrilees, RN, M.S.- University of California, San Francisco - Memory and Aging Center; and Helen Davies, RN, M.S.- Stanford/PaloAlto VA. Reviewed by William Jagust, M.D., Professor of Public Health and Neuroscience, University of California, Berkeley. Prepared by Family Caregiver Alliance in cooperation with the California Caregiver Resource Centers and funded by the California Department of Mental Health. © 2005 Family Caregiver Alliance. All rights reserved.