While an Alzheimer’s diagnosis is life-changing, you as a caregiver can empower yourself by learning more about the disease, the changes your loved one may face, and the steps your loved one can take to move forward with life. Alzheimer’s generally progresses in stages over time. Learning essential terms related to the disease puts you in position to evaluate your loved one’s priorities, set goals, discuss treatments with their doctor, and take an active role in managing their health. The following are nine key terms that can help you better understand your loved one’s diagnosis and actively participate in their personal treatment plans.
9. Aphasia (and Dysphasia)
Aphasia relates to experiencing difficulty with comprehending and producing speech, as well as with the ability to read and write. It can result in one or more symptoms, including forgetting words, substituting incorrect words, putting words in the wrong order, making up words, switching sounds, and difficulty understanding number concepts. Dysphasia is a similar yet less severe condition and relates to the inability to find the right word or understand the meaning of a word. Symptoms of dysphasia often include delayed speech while the individual tries to recall words, and may also include difficulty with daily tasks such as going shopping or answering the phone.
Those suffering from aphasia and dysphasia can recover to some degree with speech therapy. Reducing risk factors that lead to aphasia and dysphasia can include staying mentally active, maintaining healthy blood-cholesterol levels, getting regular medical examinations, and living a healthy lifestyle.
Apathy shares some behavioral symptoms with depression, such as social withdrawal and lack of goal-centered activity. But instead of being a persistent sadness, apathy describes a lack of emotion, concern, or motivation evidenced by a lack of interest in personal hygiene, holding conversations, or previous hobbies. Ways to ward off apathy may include establishing and maintaining a daily routine, as well as engaging in fun activities like listening to music, doing art projects, or even dancing.
Beta-amyloid is a protein fragment that builds up in spaces between nerve cells in the brain. This buildup, called plaque, is an indication of Alzheimer’s. Scientists are testing experimental drugs that clear or prevent plaques from building up in the brain. Meanwhile, following your doctor’s dietary recommendations, exercising, and staying socially active help keep your brain as healthy as possible.
6. ApoE 4
Genetic testing can help in the overall diagnosis of Alzheimer’s, as about 40 percent of people with late onset Alzheimer’s disease have the ApoE 4 gene mutation. That means those who have the gene mutation face a higher risk of developing the disease. Understanding the link between the gene and other biomarkers could prove valuable to an earlier diagnosis and treatment plan.
A biomarker is a measurable level of a substance, such as a specific protein in the blood, that indicates an infection or exposure to a disease. Doctors look for specific biomarkers to aid in the identification, diagnosis, and treatment of people who may be at risk for Alzheimer’s disease but do not yet display any symptoms. Together with other testing and examinations, biomarkers play a role in the overall picture of your loved one’s health, and help you and your loved one’s doctor determine next steps.
4. Acetylcholine (and Cholinesterase)
Acetylcholine is a chemical substance that the brain uses to send messages between nerve cells in the brain. Cholinesterase is an enzyme that dissolves leftover acetylcholine in the healthy brain. When there is not enough acetylcholine produced to begin with, in diseases such as Alzheimer’s, memory and learning difficulties occur. Drugs that block cholinesterase activity leave more acetylcholine available to the brain’s nerve cells. These drugs can help with symptoms but cannot cure or reverse the disease.
3. Posterior Cortical Atrophy
Posterior cortical atrophy, or PCA, is deterioration to the back part of the brain, which is the area of the brain responsible for vision. Some symptoms may include difficulties judging distances, reading lines of text, distinguishing between stationary and moving objects, and using tools or familiar objects. Researchers are determining if posterior cortical atrophy is a form of Alzheimer’s disease, as amyloid plaques are often found in the affected part of the brain for those with PCA. Some people who have this diagnosis may benefit from treatments for depression or anxiety.
2. Durable Power of Attorney
The eventual outcome of Alzheimer’s may entail the need to hand over some or all control of your loved one’s personal affairs to someone you trust. Durable power of attorney is a legal document with which you can authorize another person to make legal decisions when your loved one can no longer make them. Similarly, a durable power of attorney for health care is a document in which you can authorize someone to make decisions about your loved one’s health care, including choice of doctors and end-of-life medical treatments. An elder law attorney can draw up the necessary papers.
1. Living Trust (and Living Will)
With a living trust, you or your loved one appoint someone else — an individual or a financial institution — as a “trustee” to invest and manage your loved one’s assets. A living will is a legal document that specifies your loved one’s choices about medical care at the end of their life. For example, your loved one may determine any situations in which they would or would not want doctors to use life support machines. By making these decisions in the early stage of any disease, your loved one is empowered with the knowledge that their choices matter and must be honored.
An Alzheimer’s diagnosis can feel overwhelming, and a period of adjustment for everyone involved is normal. It’s OK to allow yourself to feel whatever reactions arise, including denial, anger, guilt, and finally, acceptance. Educating yourself as much as you can will only help you better manage your loved one’s future, help them maintain some control of their life, and help them live as well as they can for as long as possible.Whizzco