Diagnosis vs. Response - The Emotional Balancing Act of Alzheimer’s Disease

by Women's Brain Health Initiative:You have marked dates in your calendar, left yourself multiple lists all over your home, set reminders on your cellphone, but sometimes these actions are still not enough, and you are not the only one noticing. Some family members and friends are starting to make comments about your memory and are repeatedly asking you how you are feeling – and quietly, you share their concerns. You are scared to admit it, but you are just not quite yourself, and you are consistently feeling that your brain is being challenged. Deep down, you know that you need to reach out and ask for help – and you should not do it alone.HOW DO I GET DIAGNOSED?If you are worried that you might be at risk for developing dementia or Alzheimer’s disease (AD), it is critical that you follow the necessary steps to obtain an accurate diagnosis from a physician.Currently, there is no single test or series of tests to determine whether an individual is suffering from dementia.Instead, individuals must undergo a complete medical assessment that will establish the level of care, support, treatment, and services needed.To diagnose AD, your primary doctor, a neurologist, or a geriatrician will review your medical history, medication history, and your symptoms, according to the website for the Mayo Clinic (a nonprofit medical practice and medical research group based in Rochester, Minnesota). During your appointment, your doctor will conduct several tests and will evaluate:

• Whether you have impaired memory or thinking (cognitive) skills;
• Whether you exhibit changes in personality or behaviours;
• The degree of your memory or thinking impairment or changes;
• How your thinking problems affect your ability to function in daily life; and
• The cause of your symptoms.

Doctors may order additional laboratory tests, brain-imaging tests, or send you for memory testing. These tests can provide doctors with useful information for diagnosis, including ruling out other conditions that cause similar symptoms.WHAT HAPPENS AFTER DIAGNOSIS?Undoubtedly, the initial response when individuals receive a diagnosis of dementia or AD is an emotional one – both for the person diagnosed and his or her family members and loved ones. These emotions may include:Fear - You may be scared for the future and how your family and friends will be affected;Denial - You may feel overwhelmed by how your life will change and believe that you have been misdiagnosed;Anger - You may feel frustrated that your life is taking a different course than the one you had planned, one that is entirely out of your control;Relief - You may feel some comfort in having an explanation for the changes that you have been experiencing; andDepression - You may feel sad or hopeless about the way your life is changing and worried that these changes will be too much for you and/or your family to manage.It is important to take care of your emotional needs. Acknowledging and coming to terms with the various emotions that you are feeling will help you accept your diagnosis, move forward, and discover new ways to live a positive and fulfilling life.Too Many Questions and Not Enough Answers. But there is help.After receiving your diagnosis, it is common to leave your doctor's office unsure of what questions to ask. You just received life-changing news, and you need time to absorb this information and to understand its implications for both you and your family.One of the most valuable things that you can do upon receiving a diagnosis (no matter what that diagnosis may be) is to transform your emotions into positive action. As part of your action plan, it is important to ask some of the following questions to your doctor, your family, or even your local support organization:

• Where do I go for more information?
• What do I do now?
• Can I beat it? How do I work with it and not against it?
• How much time do I have?
• What are my treatment options?
• How do I ensure that I am receiving the best care possible?

Be honest with yourself. Work with your emotions – not against. A diagnosis of AD can leave you feeling disconnected or abandoned from others.Always remember that you are not alone – there are many support groups for patients and caregivers.Your local Alzheimer’s Association can also provide you with a list of specialists in your area. Share your experiences with others and learn. Above all, ensure that you speak with your doctor.Talk with your DoctorIn January 2006, the Alzheimer's Association established an advisory group composed of individuals in the early stages of AD. The group is helping to provide the most appropriate services for people living with early-stage Alzheimer’s, raise awareness about early-stage issues, and advocate with legislators to increase funding for research and support programs. Members of the Alzheimer’s Association National Early-Stage Advisory Group have shared their own experiences and questions that they wish they had asked their doctors. As you develop your own list of questions, consider the following:The diagnosis of Alzheimer's disease

1. What test(s) or tools did you use to determine my diagnosis?
2. What are you measuring with the tests you performed?

The development of Alzheimer's disease

1. How will the disease progress?
2. What can I expect in the future?

Treatment options

1. What treatment options are available?
2. Which symptoms are being targeted by each medication?

Clinical trials

1. What clinical trials are available?
2. Where can I find published information about clinical treatment studies?

Care team

1. How familiar are you with Alzheimer's disease? Will you be managing my care going forward?
2. If I need to be hospitalized, will you be able to provide care in this setting?

Resources and support

1. What resources are available to help me learn more about my diagnosis? My family?
2. What support services are available to help me live well with the disease, for as long as possible?

To download a PDF copy of the foregoing questions and others, visit the Alzheimer’s Association website here.Acceptance is a ProcessLearn about the disease. Being informed can help you understand how the disease progresses and what you can expect. Give yourself time to grieve and time to be angry – then be motivated to do something about it.Remember that it is okay to ask for help. Working together, and as early as possible, offers patients and their caregivers a better opportunity to start a treatment program and/or routine and to build a plan for the future, including care options, living situations (care, driving, etc.), and financial and legal matters.Most importantly, live. Despite the diagnosis, enjoy the life that you are living and continue doing the things that you enjoy most – just do it with a new perspective and awareness.The Accuracy of DiagnosisTo date, there is only one conclusive test to diagnose Alzheimer’s disease: a postmortem examination of a patient’s brain. While a person is still alive, he or she will undergo a variety of physical and cognitive tests to determine whether he or she is suffering from Alzheimer’s disease — in which case, the patient may receive a diagnosis of “possible” or “probable” Alzheimer’s dementia.Although there continues to be no single test (or series of tests) that can accurately diagnose Alzheimer’s disease while a person is living, there have been significant advances in technology and in diagnostic testing methods that use brain scans and spinal taps to detect certain biomarkers of the disease, even in its pre-clinical stage. While these advancements are progressive, they tend to be invasive and quite costly – presenting another set of challenges and stress for the patient.Fortunately, it seems that simplicity and accuracy of diagnosis may not be too far away. A team of researchers from Japan and Australia are getting closer to developing a blood test that can accurately identify Alzheimer's patients with up to 86% sensitivity and specificity (sensitivity refers to true positives identified by the test, while specificity refers to true negatives). The test also has the ability to differentiate between different types of dementia, which can assist doctors with tailoring their methods to fit the diagnosis.Early detection of the disease could be a doctor’s best chance for slowing its progress, according to the Alzheimer’s Society. “Current methods of diagnosing dementia can be slow and expensive, so finding a cheap, quick test that can accurately identify if someone has dementia is a top priority for researchers," Doug Brown, Director of Research and Development at the Alzheimer's Society, told CNN. This blood test – though still in its experimental stages – may prove to be a game-changing feat for medical research.Other Causes of Memory LossIt is critical to never underestimate the importance of a complete medical assessment because there are other medical conditions that can mimic Alzheimer’s disease. According to one estimate, there are more than 50 conditions that can cause or resemble the symptoms of dementia, and a small percentage of dementias are reversible. Obtaining a proper diagnosis is crucial because symptoms subside when the underlying problem is treated.For instance, while memory can be impacted by serious ailments (such as fluid in the brain, a stroke, or a tumor), other more treatable conditions include medication interactions (especially antihistamines, anti-nausea medications, steroids, and bladder relaxants), vitamin B12 deficiency, an underactive thyroid, a urinary tract infection, diabetes, untreated depression, excessive drinking (alcoholism), head injury, and even Lyme Disease. Sometimes the effective and immediate treatments of these conditions result in significant improvements in mental functioning. In some cases, a complete reversal can be experienced before any permanent damage to the brain occurs – even more reason to consult a doctor as early as possible when experiencing any signs of dementia.Source: MIND OVER MATTER V6