{"id":6224,"date":"2020-09-03T07:43:43","date_gmt":"2020-09-03T11:43:43","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=6224"},"modified":"2020-09-04T07:12:12","modified_gmt":"2020-09-04T11:12:12","slug":"pursuing-the-diagnosis-no-one-wants-to-hear","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2020\/09\/pursuing-the-diagnosis-no-one-wants-to-hear\/","title":{"rendered":"Pursuing the Diagnosis No One Wants to Hear"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Frank told his caregivers\u2019 support group, \u201cI finally got my wife, Millie, to agree to see the doctor about her forgetfulness. He gave her a quiz to test her memory. Millie didn\u2019t do so well, but the doctor said, \u2018It\u2019s just a little dementia.\u2019\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">He continued, \u201cI feel better. Thank goodness, it isn\u2019t Alzheimer\u2019s!\u201d&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Frank\u2019s dread of Alzheimer\u2019s is very common. Common too is his doctor\u2019s avoidance of the \u201cA word.\u201d He instead couched the diagnosis in terms he deemed easier to take.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Or perhaps he was just being honest. If the only test the doctor performed was a Mini-Mental, a widely used screening exam that measures a decline in cognitive function, \u201ca little dementia\u201d is all he would know at this point.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But to halt the diagnostic process there is<\/span> <span style=\"font-weight: 400;\">unethical, not only because the patient and family have a right to a definitive diagnosis, but also because some forms of dementia are <\/span><i><span style=\"font-weight: 400;\">reversible<\/span><\/i><span style=\"font-weight: 400;\">. You want to identify one of them right away. The sooner you treat them, the better.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It helps to be clear about what \u201cdementia\u201d is and is not. It\u2019s not merely a euphemism for Alzheimer\u2019s disease (even if it is used that way). It\u2019s not a milder form of forgetfulness.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Dementia is a decline in cognitive skills: thinking, memory and perception. The symptoms can be caused by many different diseases. Alzheimer\u2019s disease is one\u2014the most common. Vascular disease, dementia with Lewy bodies and frontotemporal disorders are other common causes of dementia. (Other problems\u2014like thyroid disorders or a vitamin B12 deficiency\u2014can cause similar symptoms.)<\/span><\/p>\n<p><span style=\"font-weight: 400;\">So while Alzheimer\u2019s <\/span><i><span style=\"font-weight: 400;\">is<\/span><\/i><span style=\"font-weight: 400;\"> dementia, dementia isn\u2019t always Alzheimer\u2019s.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">(In my blogs, I alternate using \u201cAlzheimer\u2019s disease\u201d and \u201cdementia\u201d to avoid annoying repetition. I also do it to make clear that the situations and problems I discuss pertain not only to Alzheimer\u2019s but to all the diseases that cause the collection of symptoms we call \u201cdementia.\u201d)&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Because there are many possibilities, a thorough assessment is essential to find out what is causing the symptoms. People frequently ask, \u201cWhat does it matter when nothing can be done about it anyway?\u201d&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It does matter. Here\u2019s why:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Foremost, as I mentioned, it might be something reversible.<\/span><\/li>\n<li style=\"font-weight: 400;\">For many people a diagnosis\u2014even of Alzheimer\u2019s\u2014comes as a <i>relief<\/i>. After he learned he had Alzheimer\u2019s, Martin said, \u201dYou know, I thought I wasn\u2019t trying hard enough to get things straight. Now I know it\u2019s not my fault. And it\u2019s not that I\u2019m crazy.<\/li>\n<li style=\"font-weight: 400;\">Patients and caregivers alike adapt and cope more easily if they have good information about what they are dealing with and what to expect.&nbsp;<\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">There are treatments that&#8211;though they don\u2019t stop the progression of the disease&#8211;improve symptoms temporarily in Alzheimer\u2019s and dementia with Lewy bodies. They are less effective in other dementias. And they\u2019re most effective in the early stages.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Some other medications are contraindicated in dementia with Lewy bodies. Patients and care partners must be informed if they are dealing with that disease.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Often, people with dementia are more hopeful and feel they are making a contribution if they can participate in a clinical trial. However, to enter a trial, you must first have an accurate diagnosis.<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">How do you get a thorough assessment and diagnosis?<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The search can start with your primary care physician. However, if, like Frank and Millie\u2019s doctor, he\u2019s not proactive, you will need to pursue a more thorough assessment.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">But let\u2019s say your primary doctor is on top of things. Maybe she\u2019s even a geriatrician, a specialist in the care of older people. She will start with a medical history and ask for a description of symptoms and how they affect the daily life of your partner.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">She will do a medical exam, and a brief mental status test like the Folstein Mini-Mental State Exam or the Montreal Cognitive Assessment (MoCA). Your partner\u2019s score will indicate whether she (or he) has some decline in cognition. It doesn\u2019t reveal a cause.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The doctor will order tests of blood and urine to check for some conditions that can cause a change in cognitive ability but, with treatment, are reversible: thyroid disorders, vitamin B12 deficiency, use of certain medications.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">She will screen the patient for depression because the symptoms of depression can resemble dementia. If that\u2019s all or part of the problem, anti-depressant medication can improve both mood <\/span><i><span style=\"font-weight: 400;\">and<\/span><\/i><span style=\"font-weight: 400;\"> thinking.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If the doctor finds no reversible cause for your partner\u2019s cognitive decline, she should send both of you on to a neurologist, a specialist in diseases of the brain, to test reflexes, gait, and balance\u2014things that could indicate certain parts of the nervous system are affected.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The neurologist can order and then interpret a brain scan\u2014usually an MRI\u2014looking for signs of strokes, a brain tumor, fluid accumulation, brain atrophy\u2014all of which could cause the symptoms of dementia.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Kerry learned the benefit of brain scans. Her husband, Mike, couldn\u2019t hold on to information for more than 10 seconds, had great trouble walking and fell repeatedly. Kerry thought he was losing the ability to walk because he didn\u2019t walk enough, but a brain scan revealed that he had normal-pressure hydrocephalus\u2014a buildup of fluid in his brain. He had surgery to implant a shunt to drain the fluid, and within months his memory and walking were nearly normal.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If the MRI scan reveals nothing, but your partner\u2019s score on the mental-status exam showed a decline in cognition, she (or he) will need neuropsychological testing to get a more specific diagnosis.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For this, a psychologist who specializes in the connection between the brain and behavior and function gives a large number of tests to the patient over a period of several hours. This can be grueling.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Each test focuses on a specific cognitive function\u2014the very ones that tend to decline in dementia. It follows that those who <\/span><i><span style=\"font-weight: 400;\">do<\/span><\/i><span style=\"font-weight: 400;\"> have a form of dementia are going to run into some trouble on the tests. Some break down and weep.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Neuropsychologists are trained to be encouraging and help people relax. They will halt a test that is proving too challenging. Naturally, the test givers vary in their ability to put people at ease. And the test takers vary in their nervousness and their willingness to cooperate. My friend, Nigel, when he heard I was writing about this, told me that when he took his wife for the tests, she refused to cooperate and got up and walked out.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Even the brief cognitive screening tests (e.g., Mini-Mental) that the primary doctor or neurologist repeats once a year come to be dreaded by people with dementia. They, like any of us, hate to be confronted by their failures. Charley made his wife drill him on what date it was and what town they were in (questions included on the test) as they drove to the doctor\u2019s office. Other people with dementia simply refuse to go to the doctor.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The usefulness of these brief screening tests declines as the disease progresses, so I suggest that care partners talk to the physician about discontinuing them after a couple of years.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The information derived from the more extensive neuropsychological tests can be very valuable. It indicates where a person\u2019s brain is working well and where it is not. The pattern of disease it reveals adds more certainty to the diagnosis. And it helps families plan care by revealing where the individual needs the most support and where she (or he) can still function independently.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If your partner is not getting a thorough assessment through your primary care physician, try to find a local geriatrician or neurologist with a lot of experience with dementia. Or check to see if one of the National Institute on Aging\u2019s 32 Alzheimer\u2019s Disease Research Centers is nearby. You can\u2019t do any better than to go there. They are located at major medical institutions around the US. Not only will the physicians be the best in the field, but they will be in touch with the latest research and treatments, if not actually conducting that research themselves.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Go <\/span><a href=\"https:\/\/www.nia.nih.gov\/health\/alzheimers-disease-research-centers\" target=\"_blank\" rel=\"noopener noreferrer\"><span style=\"font-weight: 400;\">here<\/span><\/a><span style=\"font-weight: 400;\"> for locations of the centers. Appointments may need to be scheduled months ahead. Not only are they in demand, but your partner will need a block of appointments to cover all the examinations and tests.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Your next best bet is to go to a nearby teaching hospital. See if they have a memory center. You should find a good diagnostic program there.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Several types of blood tests for Alzheimer\u2019s have been developed recently and look very promising. Their reliability needs to be proved, but assuming it is, they should be widely available in around five years. That will change the diagnostic picture a lot, but not completely. People will still need to be tested for any additional factors that might be contributing to their dementia, like vitamin B12 deficiency or vascular disease. And the neuropsychological tests will still be very helpful in shedding light on where people need help and what their remaining strengths are.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Testing\u2014current and future\u2014gives families a better idea of the near-term prognosis and the long-term. When we got my mother\u2019s diagnosis, her prognosis set in motion big changes for her and for me because it was clear she could no longer drive a car or live alone.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">On the other hand, I know a couple who, immediately after her diagnosis of Alzheimer\u2019s and given her prognosis, drove across the country and visited all their favorite National Parks.<\/span><span style=\"font-weight: 400;\">&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Pursuing a diagnosis\u2014and hoping it isn\u2019t of Alzheimer\u2019s, the word no one wants to hear\u2014is not opening Pandora\u2019s box. It is opening the door to the opportunity for help and understanding. It helps you and the person you love make the best of what may be the biggest challenge you will face together.&nbsp;<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Frank told his caregivers\u2019 support group, \u201cI finally got my wife, Millie, to agree to see the doctor about her forgetfulness. He gave her a quiz to test her memory. Millie didn\u2019t do so well, but the doctor said, \u2018It\u2019s<span class=\"ellipsis\">&hellip;<\/span><\/p>\n<div class=\"read-more\"><a href=\"http:\/\/78.142.243.82\/~silvercentury\/2020\/09\/pursuing-the-diagnosis-no-one-wants-to-hear\/\">Read more <span class=\"screen-reader-text\">Pursuing the Diagnosis No One Wants to Hear<\/span><span class=\"meta-nav\"> &#8250;<\/span><\/a><\/div>\n<p><!-- end of .read-more --><\/p>\n","protected":false},"author":7,"featured_media":6225,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"_FSMCFIC_featured_image_caption":"","_FSMCFIC_featured_image_nocaption":null,"_FSMCFIC_featured_image_hide":null,"footnotes":""},"categories":[79,1],"tags":[],"class_list":["post-6224","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-voices-views"],"cc_featured_image_caption":{"caption_text":"","source_text":"","source_url":""},"wps_subtitle":"","_links":{"self":[{"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/posts\/6224","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/comments?post=6224"}],"version-history":[{"count":4,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/posts\/6224\/revisions"}],"predecessor-version":[{"id":6229,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/posts\/6224\/revisions\/6229"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/media\/6225"}],"wp:attachment":[{"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/media?parent=6224"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/categories?post=6224"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/78.142.243.82\/~silvercentury\/wp-json\/wp\/v2\/tags?post=6224"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}