The cumulative effect of all these necessary decisions may seem overwhelming, but taking things one step at a time can make the situation more manageable.
Step 1: Diagnosis
Individuals with early-onset Alzheimer's disease will exhibit many of the same symptoms as those whose disease appears later in life. Forgetfulness, confusion, difficulty completing simple tasks, problems with communication and personality changes are among the possible experiences that may be encountered. Anyone who has this combination of symptoms should see a physician as soon as possible.
Alzheimer's diagnosis usually comes as a result of ruling out all other possibilities. The only way to biologically diagnose it is to examine brain tissue under a microscope, which is typically done only after death.
According to the Fisher Center for Alzheimer's Research Foundation, most physicians will perform the following tests to rule out other conditions, such as a brain tumor or blood clot:
- Clinical exam, including blood pressure, vision and hearing evaluations.
- Medical history, in which the patient is asked to provide a family history of the illness, previous medical issues, previous or current prescription and recreational drug use, and a detailed description of the symptoms.
- Lab tests, including glucose levels, thyroid functioning and blood count. The physician is looking for an indication that there is an illness other than Alzheimer's disease that may be responsible for the symptoms.
- MRI or CT scan of the brain; these scans are conducted to find blood clots or tumors that may be causing the symptoms.
- Neuropsychological screening in which a physician will conduct tests to assess attention span, coordination, memory and problem-solving skills. These tests will provide a more accurate assessment of the individual's symptoms.
For more information, see Early-Onset Alzheimer's Disease: Signs, Symptoms, and Diagnosis.
Step 2: Treatment
Although there is no cure for Alzheimer's disease, there are treatments that can help people cope with the symptoms.
A class of medications called cholinesterase inhibitors delays the worsening of symptoms for an average of 6 to 12 months for about half the people who take them. According to the Alzheimer's Association, these medications work by supporting a neurotransmitter called acetylcholine. This chemical increases communication between nerve cells. It is thought that the breakdown of this communication may cause Alzheimer's symptoms.
Brand names of this type of medication include Aricept (donepezil), Exelon (rivastigmine) and Razadyne (galantamine). Each medication is approved for specific stages of the disease, which range from mild to severe.
Another medication, called Namenda (memantine), works by supporting a different neurotransmitter, called glutamate. Namenda, approved in 2003, is the only medication in this class.
All of these medications have side effects that can be troubling. Nausea, dizziness, vomiting and liver damage are among them. To learn more about these medications and their potential interactions with other drugs, visit Drugs A to Z.
There is little research that compares the efficacy of these medications. According to a 2008 report in the Annals of Internal Medicine, experts recommend that such medications be given on a trial basis and that side effects should be carefully monitored.
People with early-onset Alzheimer's might also think about engaging in a clinical trial. There are pros and cons to participating in a trial, so talk with your physician. Here's a searchable database of clinical trials.
Step 3: Living With Alzheimer's Disease
Although it may not be easy at first, people with Alzheimer's disease can live full and productive lives. Taking the time to prepare for the challenges that come as the disease progresses will ease the difficult transitions, such as the following:
- For family and children -- now is the time to start conversing with loved ones. Conversations should take place about everything from the abstract, like fears and hopes, to the practical, like finances and caregiving decisions. Include everyone in these conversations, even children. Age-appropriate language is a must, but children can benefit from being a part of the process. Encourage family members to join support groups where they can talk about their feelings with others experiencing the same thing.
- Preserving memories -- many experts recommend creating memory books for people with Alzheimer's disease. These books are essentially scrapbooks, containing pictures and mementos from the person's life. Those in the early stages of the disease can put these books together themselves. Some people also enjoy creating journals or video diaries for their children.
- Career -- for those who are still employed, talk to your supervisors about your diagnosis as soon as you feel comfortable. It may be possible for an employer to make adjustments that will allow you to continue working as long as possible. Sit down with the human resources department and talk about benefits and possible early retirement options.
- Financial issues -- experts recommend that people with early-onset Alzheimer's meet with a financial planner. It's important to plan for the time when working will be impossible. It may also be helpful to contact the Centers for Medicare and Medicaid Services to learn more about qualifying for government assistance.
- Legal concerns -- an advanced directive, which is a document that clarifies what medical interventions an individual wants if the individual becomes unable to communicate, can set minds at ease. One good resource on this topic is Taking the Mystery out of Advanced Directives.
"Advance Directives." Medline Plus: Health Topics. 14 May 2008. National Institutes of Health. 23 May 2008. <www.nlm.nih.gov/medlineplus/advancedirectives.html>.
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"Alzheimer's Disease Fact Sheet." Alzheimer's Disease Publications. 26 Oct. 2007. National Institute on Aging. 22 May 2008 <www.nia.nih.gov/Alzheimers/Publications/adfact.htm>.
Bourgeois, Michelle. "History of Memory Books." Department of Communication Disorders: Research Lab and Caregiver Resources. 2007. Florida State University. 23 May 2008 <comm2.fsu.edu/faculty/commdis/bourgeois/memorybook.html#memorybooks>.
"Living With Early-Onset Alzheimer's Disease." Cleveland Clinic Health System. 14 Jun. 2006. Cleveland Clinic. 22 May 2008 <www.cchs.net/health/health-info/docs/2400/2498.asp?index=9592%20>.
"Medicaid." Alzheimer's Resources. 2008. Fisher Center for Alzheimer's Research Foundation. 23 May 2008 <www.alzinfo.org/alzheimers-resources-medicaid.asp>.
"Standard Treatments." Alzheimer's Disease: Treatments. 20 Mar.Alzheimer's 2008. Alzheimer's Association. 23 May 2008 <www.alz.org/alzheimers_disease_standard_prescriptions.asp>.