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Lewy Body Dementia (named after Frederich Heinrich Lewy, who in 1912 described the disease) is a spectrum disorder described by a rapid decline in the patient’s cognition and behavior. Hallucinations and delusions, as well as alterations in sleep, heart rate, and digestion, are other Dementia with Lewy body characteristics. Certain subtypes of Dementia with Lewy Bodies cause people to experience shaking, rigidity, and balance difficulties. The presence of Lewy bodies – abnormal brain deposits composed of several proteins located throughout the brain, is the post-mortem diagnostic hallmark. Dementia with Lewy bodies is a rapidly progressing disease. Death usually occurs within five to seven years of diagnosis. Symptoms of Lewy Body Dementia Unlike Alzheimer's Disease, Dementia with Lewy bodies does not have predictable stages. Early symptoms of the disease vary. Some people first experience cognitive and memory changes similar to those associated with early Alzheimer's Disease. For other people, the first symptoms may include shaking and a shuffling gait. Sometimes hallucinations are the first symptom. Therefore, a thorough medical exam plays an important role in ruling out other causes such as Parkinson's Disease or the side effects of medications used to treat other illnesses and conditions. Responses to the medications used to treat or reduce the severity of hallucinations can inadvertently confirm a diagnosis of Dementia with Lewy bodies. Unlike people who have Alzheimer's Disease, people who have symptoms commonly associated with Dementia with Lewy bodies can have dangerous, and sometimes fatal reactions to antipsychotic medications such as haloperidol (Haldol) and risperidone (Risperdal). (See References 1 and 2 below.) This finding points to the importance of keeping detailed medical history notes and prescription records. This is especially true for first-time appointments and in the emergency room. Lewy bodies are also found in other brain disorders such as Parkinson's Disease. Many people who have Parkinson's Disease eventually develop the thinking and reasoning difficulties associated with Dementia with Lewy bodies. Conversely, many people who have Dementia with Lewy bodies experience the shaking and shuffling gait associated with Parkinson's Disease. The overlap in symptoms and other evidence suggest that Dementia with Lewy bodies, Parkinson's Disease, and Parkinson's Disease Dementia may share underlying abnormalities. References: Source 1 , accessed March 6th, 2016 Source 2 , accessed March 15th, 2016 Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

The recent revelation that actor, Bruce Willis, is living with Frontotemporal Dementia (FTD) is a reason to highlight this past post. In 1892, the German neurologist and psychiatrist Arnold Pick described a case involving an elderly patient with progressive loss of speech and Dementia. Later, when the patient died, the autopsy showed that specific brain parts had shriveled. Unlike the overall shrinkage associated with Alzheimer’s Disease, this type of Dementia appeared to target the frontal and temporal lobes. The two frontal lobes, located on the front of each half of the brain, contain the structures that control our executive functions, such as planning, organizing, and solving problems. The frontal lobes also control behavior, emotions, and personality. The two temporal lobes, located on each side of the brain just above the ear, allow us to perceive and recognize faces and objects and transfer short-term memories into our long-term memory banks. Symptoms of Frontotemporal Dementia It is not surprising to discover that people living with Frontotemporal Dementia (FTD) may no longer seem like the people we once knew. A parent who was once friendly, polite, and careful about their appearance may say and do socially unacceptable things. Emotional blunting, or the inability to express verbal and non-verbal feelings, is another characteristic of this type of Dementia. Another indicator of FTD is difficulty in using and understanding spoken and written language. Language difficulties include repeated mispronunciations and the inability to make appropriate associations between objects and their name. Frontotemporal lobe patients may use words and phrases like “this,” “that,” and “over there” in place of specific nouns and descriptions. People who have Frontotemporal Dementia are not aware of how they have changed. Scientists do not know the cause of Frontotemporal Dementia. However, research demonstrates that genetics often plays a role in its development. Some studies show alterations in genes that code for specific brain proteins in nearly 45 percent of people with family members who have certain types of Frontotemporal Dementia.1 These altered proteins form insoluble deposits in brain neurons. The deposition of the proteins causes the neurons to swell, burst open, and die.2 It appears that genes play a role in nearly 45 percent of people who have Frontotemporal Dementia.1 However, it is also important to remember that for more than 50 percent of Frontotemporal Dementia families, genetics either does not play a role or is not yet an understood factor. Tests are available to determine if the Frontotemporal Dementia that you, or another family member, have is genetic. Deciding to undergo testing is not always easy. It is essential to consider how you and other family members might feel if you should receive positive results. Will knowing make you anxious, relieved, or empowered? Will other family members also want to test? How might this information affect family planning for you or your adult children? Will having a positive test influence your employer or make it more difficult to receive health or life insurance? Anybody would find these and many other questions challenging to answer. Often, people find talking with a genetic counselor can make the decision to test – or not – easier. The genetic counselor, by explaining the technical and emotional issues associated with genetic testing, can help you make a comfortable decision. Afterward, the genetic counselor can explain the test results to you and guide discussion about any further steps you may want to take. References: 1. HS Kirshner, “Frontotemporal lobe dementia: Genetic Distribution and Variation,” http://emedicine.medscape.com/article/1135164-overview#aw2aab6b4 (accessed March 5, 2016). 2. W Leonard, MpH “Causes of Dementia,” http://www.healthline.com/health/dementia (accessed March 6, 2016). Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Have you ever taken a cruise, or even thought about doing so? Getting aboard a cruise ship for the first time and not knowing what is coming next might create a bit of fear. Fear that may have kept you from booking the trip for months, and maybe from doing it at all. Not being able to “see land,” or the destination can sometimes lead to anxiety. But turn that understanding around, once experienced, you may not be able to imagine a life without the joy of meeting new people and exploring new cultures. But even well-worn ship captains use tools on every voyage, to safely navigate and make steady progress, a map and a compass. Not knowing what’s coming next can be frustrating and even disastrous, but with guidance and the right information, there can be a steady calm in the midst of the stormiest weather. Dementia, like cancer, is a term often fraught with an enormous amount of fear and anger stemming in large part, from a shortage of information, or sometimes, too much. It's not uncommon for someone who has lived with a chronic and/or life-threatening illness, or who has acted as a caregiver, upon hearing the topic of a specific disease feels so much pain that they do not wish to revisit the experience in any way, shape or form. Repeated exposure may help dampen the immediate response, but deep down, without an ability to process the unpleasant feelings, and without the right tools, it can remain painful for some time. Having a Compass Can Help In the case of Dementia, knowing is hard, but good. It's hard because we basically understand the nature of what it is, a gradual loss of cognitive abilities. But it's also good, and valuable because the act of “knowing more” can actually relieve at least some of the anxiety. Having a map and a compass allows you to plan your actions and enhance your responses as you cross the sea of life. Without a doubt, if you believe you or a loved one or friend is experiencing one or more cognitive challenges, it is imperative to sort through what's going on and begin to understand the possible causes, progression (if, in fact, it's Dementia), care or interventions that make the most sense given whatever you learn. Neurologists (brain specialists), and particularly those who specialize in Dementia, are the current “Ship Captains” for a full cognitive workup. That's not to say that primary care physicians don't play an important role, they do. Even trained social workers, nurses, psychologists, psychiatrists, and many other types of healthcare professionals can lend a hand with identifying issues that need more insight and testing. Don't walk out of an annual check-up and say “everything's okay,” if you know in your heart-of-hearts it isn't, or if others you respect and love say that there's something “still going on.” Dig deeper. Get a check-up from the neck-up, as Zig Ziglar used to say. Having a “neuropsych” examination, as well as blood tests, a nutritional evaluation, and maybe even certain scans or more advanced tests are often the right things to do. Eliminate all possible causes, even reversible forms, of cognitive difficulty and as with most major health issues, seek second opinions as necessary. Over the next four months, we're going to more closely explore the following leading forms of Dementia: Alzheimer's Disease, Vascular Dementia, Lewy Body Dementia, and Frontotemporal Dementia. Then we will follow with lesser-known types of Dementia which may result from traumatic brain injury (TBI), repetitive concussions (CTE), infections/viruses (CJD and HIV), alcoholism, and others. Knowledge is like a compass rose, always pointing north, it can guide, empower, and reduce anxiety. Like a ship setting sail to a new port of call, with a good map and a reliable compass, having "knowledge" tools enable you to chart a course towards your best possible tomorrow. Author: Kevin Jameson, Volunteer | President | Chairman. Dementia Society of America. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Dementia is costly, both financially and emotionally. If you or a loved one has been diagnosed with Dementia, you are probably overwhelmed with the prospect of how to financially plan for the future. A trusted partner at a time of need can be a welcome help. One option for managing finances is a pooled special needs trust (SNT). A pooled SNT is administered by a nonprofit organization. The organization makes decisions on how funds from the trust are disbursed on behalf of the trust Beneficiary, makes decisions on who invests the funds, fulfills reporting requirements to government agencies, and stays abreast of changing regulations so that means-tested government benefits (like Medicaid and Supplemental Security Income (SSI)) are not jeopardized. Each Beneficiary’s funds are placed in an individual sub-account. The cash assets from all subaccounts are then “pooled” together and invested as a group. Earnings based on the Beneficiary’s share of the principal are reinvested into each sub-account. A financial record is maintained for each sub-account that reflects all the activity in the account. Each beneficiary or their advocate has access to the financial information either electronically or by mail. Most pooled trusts offer both First Party and Third Party SNTs. A First Party SNT is established with the Beneficiary’s own funds. A Third Party SNT is funded by a third party for the benefit of the individual with dementia or a family member with special needs. A pooled special needs trust makes sense for multiple reasons. It allows one the opportunity to set aside funds that will enrich the quality of life for the Beneficiary. The Beneficiary can benefit from trust administration services including investment and management. All disbursements are for the sole benefit of the Beneficiary. Pooling the funds reduces administrative fees and increases the principal for investment purposes. A pooled SNT will also protect eligibility for Medicaid and Supplemental Security Income in many instances; however, special planning is required for Beneficiaries over the age of 64 for whom Medicaid Long-term Care benefits may be needed. Planning is Key It is strongly recommended that you consult with a Trust and Estates Attorney or Elder Law Attorney who can advise you on how a pooled special needs trust can benefit your situation. When appropriate, an SNT can give you a sense of well-being regarding your own, or your loved one’s, financial future while continuing to live life with quality and dignity. Authored by Joanne Marcus, MSW, Executive Director, Commonwealth Community Trust (CCT). CCT is a 501(c)(3) national nonprofit organization that administers affordable and efficient pooled special needs trusts. CCT was founded in 1990 and is managed by a Board of Directors who serve with a caring heart and without compensation. With years of experience, CCT has a proven reputation as a prudent steward and administrator. For more information about CCT, contact Joanne Marcus, MSW, Executive Director at jmarcus@trustcct.org or 804-740-6930. Visit our website at www.trustCCT.org for access to information and additional resources. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

The health benefits that various foods and diets to improve overall health or lower risk for disease is a newsworthy topic. Some articles promote that eating fiber-rich fruits, vegetables, and whole grains helps us to maintain a healthy weight, as well as lowering our risk for colon cancer. Others assert the Mediterranean diet – one which encourages replacing red meat for fish and chicken, saturated fats with olive oil, and refined carbohydrates with whole grains – reduces the risk for heart disease, certain cancers, and diabetes. There are many research studies touting the benefits of red wine on lowering cholesterol blood levels and thereby reducing the risk for heart disease, strokes, cataracts, and colon cancer. Though a controversial area of research, some studies indicate drinking moderate amounts of red wine may slow declines in brain function. With respect to consuming wine and other alcoholic beverages, moderation is the keyword. However, most people are unsure of how much a moderate amount is. The Link Between Drinking and Dementia According to the Dietary Guidelines for Americans, a low to moderate alcohol consumption is no more than one drink a day for women and older adults, and two for men. One drink is usually 1 1/2 ounces or 15 grams of alcohol, which equals approximately 12 ounces of beer, 5 ounces of wine, or 1.5 ounces of 80-proof liquor. (See Note 1 below.) These dietary guidelines refer to the amount consumed on any single day and not as an average over several days. In other words: Do not save your daily allocation for a weekend binge. Alcohol-related brain damage, (ARBD) conditions that include Wernicke-Korsakoff Syndrome and alcoholic Dementia, is the result of drinking too much alcohol over the course of several years. Though both types of ARBD exhibit Dementia-like symptoms, neither condition is true Dementia. The difference between ARBD and Dementia such as Vascular, Lewy body, or Alzheimer’s disease is in the ability to treat or stop the progression of symptoms. Consuming more than the recommended amounts of alcohol does increase the likelihood of developing Alzheimer’s disease and Vascular Dementia later in life. However, researchers have yet to establish the numerical relationship between alcohol consumption and risk for Dementia. The reasons are many and include research entirely dependent on reported observations and evaluating the variables that, in combination with alcohol consumption, affect the long-term risk for Dementia. However, one can state with certainty the more you drink the greater the likelihood of developing Dementia later in life. High alcohol consumption also increases the risk for stroke, heart and liver disease, and depression – all of which are well-known Dementia risk factors. Note: 1. U.S. Department of Health and Human Services and U.S. Department of Agriculture, 2015. 2020 Dietary Guidelines for Americans. 8th Edition, Washington, DC; 2015, (accessed June 15, 2015). Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

"We need to make it right before it goes wrong." What a wonderful expression! The phrase gives you permission to say, "I need your help." Yes, it is true that some people, even without your asking, will be more than happy to volunteer their time. However, an uncommitted "Call if you need anything" is not the same as "What do you need? Tell me what I can do to help you." Many family and friends, perhaps not understanding the responsibilities and challenges you face, will require a little prodding. A good approach is to organize an informal gathering with your family and perhaps a few friends. Lunch or light refreshments may prevent the conversation from becoming confrontational. Use video conferencing to include, and to get input from, those family members who do not live nearby. Give examples of what they can do for you and for the loved one you have in common. A request for respite – just a few hours per week – is a good place to start. Explain you need time to relax, to take care of your health and well-being, to socialize with friends, to enjoy a little solitude as well as time to catch up on lost sleep. Getting Support for Caregiving While you will appreciate their gift of time, there are many other ways your family can make things easier for you. A sibling who does not live nearby can manage your loved one’s finances. Family, friends, and even nearby neighbors can buy groceries, do the laundry, or take responsibility for such things as a car, house, or yard maintenance. Ask that a family member or a friend accompany you and your loved one to doctor appointments or other places where you anticipate having behavioral difficulties. A promise of going out to lunch after his or her doctor's appointment can improve everyone’s mood. Use a calendar and sign-up sheet to free yourself from having to think about day-to-day management details. Exchange contact information to make communication as easy as possible. Consider designating a person to be the point of contact. Think about using an online app or website like www.lotsahelpinghands.com . A few words to caregivers – don’t be stoic. Accept help! Promises aside, it’s more important to be a good caregiver and not an irritable, exhausted, and burnt-out caregiver. A few words to family members – don’t assume one person can shoulder all the responsibilities and challenges of caring for the loved one you have in common. It’s unfair and will create ill feelings. Make yourself available even if he or she claims they neither need nor want your assistance. It’s also important that you tell your family member that you appreciate his or her efforts – a gift certificate to a favorite restaurant or for a rejuvenating massage is another way to express your gratitude. Call or e-mail often - but not too often or at inconvenient times. In addition to inquiring about your loved one, be sure to ask your family member about their general well-being. Be an empathetic and supportive listener. And to caregivers, family members, and friends - the most important words you can say to one another are "Thank you." Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Exercising with someone might sound simple enough, but there are profound benefits from having an exercise partner that is worth exploring. Some people just go to the gym, hop on the treadmill, throw in their earbuds, and do their thing. Others like to take a power hike or mountain bike trip alone in nature. Sometimes that meditative experience is important and they don’t want to necessarily share that special time in their mind with someone else. There are certain martial arts traditions that encourage you to work out alone just for the meditative quality of the experience. If your workout time isn’t engaged in some meditative aspect, you should strongly consider and seek out someone to work out with you. The Benefits of Exercise with Another Person One of the biggest benefits of having a workout partner simply boils down to having another person offering you encouragement. There are days when it’s really easy to just stay in bed and you don’t want to get up and put in your workout. If you have somebody you’re meeting up with, it holds you to a higher degree of accountability and a certain amount of social peer pressure. For some people, there’s also an element of friendly competition. People can push each other, in a well-intended manner, to go that extra tenth of a mile, or an extra 10 miles. There could also be an element of safety involved. People that lift weights routinely need another person to spot them during a wide variety of exercises. It allows them to safely lift a little bit more weight and push a little bit further through the wall than they are used to pushing. Many martial arts involve doing forms to master routine movements. Some of them, like aikido, is greatly improved by having another person related to the form or even to provide added dynamic motion. There is a social aspect to it as well. Talking to someone through the course of your workout is in itself added stimulation. Just be smart about it and make sure that your conversation isn’t taking away from actually completing your workout in a timely and effective manner. Social interaction is critical to brain health and development. When you combine this with other activities like exercise, the compound benefits are something we can’t even measure but are incredibly helpful to the brain. Contributor Author: Dr. Michael Trayford is a Board-Certified Chiropractic Neurologist and Founder of APEX Brain Centers in Asheville, NC. For additional information, and to learn more, please visit our Author's page. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

The words “house” and “home” aren’t the same. For most people, the word “house” produces a mental image of a building. In contrast, the word “home” stimulates an array of complex feelings. “Home” may bring back memories of a mother’s cooking, the view from a childhood treehouse, the sound of children playing, and the feel of a loved one’s kiss. For nearly everyone, a home is more than four walls and a roof. Home is memory, personal history, and a bountiful source of comfort. A Dementia-friendly home is one that provides both emotional and physical comfort and safety. Family photographs, the worn but still comfortable chair, an ancient radio, and a hugely ugly coffee mug – are all remnants of a life-well lived. While you may consider them clutter, your loved one finds enjoyment and pleasure in their presence. The chair may remind him or her of having once read bedtime stories to you and your siblings. The radio might encourage conversation about the days when people listened to baseball games. And what does the hugely ugly coffee mug contribute to a Dementia-friendly home? It doesn’t matter, the mug isn’t yours. How to Create a Dementia-Friendly Home Creating a physically safe environment for your loved one requires sensitivity, practicality, and acknowledgment of his or her capabilities. It is more likely your loved one will accept the changes to his or her personal space if you describe the installation of bathroom handrails as an “update” and the new automatic tea kettle as a “gift.” As a first step, assess your loved one’s home for areas and objects of potential danger. Examples of simple changes include installing automatic shut-off timers on appliances such as the toaster oven. Replace the overhead microwave oven with a countertop model. Remove tripping hazards and improve household lighting. Adjust the thermostat on the hot water heater to a lower temperature. Install handrails in the bathroom. Use safety locks on the cabinets that contain toxic cleaning supplies. Remove locks to prevent your loved one from becoming entrapped in the bathroom or bedroom. Another approach to creating a dementia-safe home is to learn about the new assistive technologies that help disabled people live at home for as long as is possible. Smartphone apps, as well as television and other kinds of monitoring systems, can let you know if your loved one is as active as expected, has left a certain area, or if an appliance has not been turned on or off. There are smartphone apps that can remind your loved one to take his or her medication, give verbal instructions on how to use an appliance, find misplaced items, as well as keep track of day and time. Good intentions aside, creating a dementia-friendly home for your loved one takes insight and experience. Your internet browser and the keywords -- home, safety, assessment, and dementia--will link you to many excellent online resources. Another option is to have an eldercare home safety consultant inspect your loved one’s home. Taking into consideration your loved one’s capabilities, he or she will inform you of needed improvements. The safety consultant can also suggest where to buy home-safety equipment and, if need be, people to install such things as bathroom handrails. Use your internet browser and the keywords--eldercare home safety consultant--plus the location where your loved one life to find locally-conveniently home safety services. A dementia-friendly home is one that respects your loved one’s dignity, while at the same time, and an illusion of independence. Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

The question is: what can we do to raise the level of awareness for all forms of Dementia, that would also include Alzheimer's? Can we, as Americans and U.S. policymakers, do what the World Health Organization and others in the global health community do? Refer more broadly and inclusively to the issues of Dementia that include: Alzheimer's; Vascular; Mixed; Lewy body; Frontotemporal; Chronic Traumatic Encephalopathy (CTE); Traumatic Brain Injury; Wernicke-Korsakoff Syndrome; Creutzfeldt Jakob Disease; HIV-AIDS, and others, rather than narrow-casting most all of our words, government plans, and efforts mainly just around Alzheimer's? When we do, those living with Alzheimer's disease (AD) will benefit as will the huge number of people that have Dementia, but not necessarily AD. Because it's better to do so, policymakers talk about cancer, heart disease, diabetes, and other major pressing health worries mainly in the broadest terms, but when it comes to Dementia... most only know of AD, and often don't understand how Dementia and AD relate to one another. If AD alone is considered the 6th leading cause of death in America, just imagine what happens when you nearly double the numbers to include all forms of Dementia... its place in American health priorities will rise even faster. Dementia is an epidemic both nationally and globally. By seeking to be more inclusive, rather than less inclusive, we shine a brighter light on millions of more cases of Dementia, as well as the needs of those living with it, their care partners, and the greater costs for families. When it comes to funding research as well as creating better person-centered care plans for insurers to cover and consider (including Medicare and Medicaid)... when we speak more openly of the larger numbers affected... it puts an additional premium on the rewards for finding medical cures and supporting non-medical innovations to deal with all forms of Dementia. Let's Broaden the Conversation Whether you're a dyed-in-the-wool-blue supporter, a red supporter, or somewhere else on the political continuum, please take the time to Know Dementia, broaden the conversation, and "see more purple." Actively demand of your civil servants that all forms of Dementia take the larger stage together for the purposes of research, concern, and care. - Kevin Jameson, DrHC, President of the Dementia Society of America This post is the result of a meeting and subsequent Q&A held during the Democratic National Convention in Philadelphia, PA on Monday, July 25th, 2016. At approximately the 1 hour mark into this forum, the Dementia Society of America was honored to have the opportunity to ask a question of Teresa Osborne, Secretary of the PA Dept of Aging, as well as Carol Lippa, Prof. of Neurology at Drexel Univ. (panel moderated by Steve Clemons, Wash. Editor at Large of The Atlantic). Click here to see the video of the entire session . Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Curing disease correlates with insight, not blind effort. There is an eternal trade-off between insight and effort. If we think carefully, understand the problem, and plan, then the effort is minimized. If (as too often happens) we think carelessly, misunderstand the problem, and rely on hope instead of planning, then the effort is not only maximized but is usually a complete waste. Lacking insight, we foolishly flush both money and effort down the drain. In the case of clinical trials for Alzheimer’s disease – and in fact, all age-related diseases – this is precisely the case. The major problem is a naïve complaisance that we already understand aging pathology. If there was a single concept that is key to all of the aging, it is the notion that everything in our organs, in our tissues, and in our cells is dynamically and actively in flux, rather than being a set of organs, tissues, cells, and molecules that statically and passively deteriorate. Aging isn’t just entropy; aging is entropy with an insufficient biological response. Senescent cells no longer keep up with entropy, while young cells manage entropy quite handily. At the tissue level, the best example might be bone. We don’t form just bone and then leave it to the mercy of entropy, rather we continually recycle bony tissue throughout our lives – although more and more slowly as our osteocytes lose telomere length. This is equally true at the molecular level, for example, the collagen and elastin molecules in our skin. We don’t finish forming collagen and elastin in our youth and then leave it to the vagaries of entropy, rather we continually recycle collagen and elastin molecules throughout our lives, although more and more slowly as our skin cells lose telomere length. Aging is not a process in which a fixed amount of bone, collagen, or elastin gradually erodes, denatures, or becomes damaged. Rather, aging is a process in which the rate of recycling of bone, collagen, or elastin gradually slows down as our shortening telomeres alter gene expression, slowing the rate of molecular turnover, and allowing damage to get ahead of the game. We don’t age because we are damaged, we age because cells with shortening telomeres no longer keep up with the damage. The same is true not only of biological aging as a general process but equally true of every age-related disease specifically. Vascular disease is not a disease in which our arteries are a static tissue that gradually gives way to an erosive entropy, but an active and dynamic set of cells that gradually slow their turnover of critical cellular components, culminating in the failure of endothelial cell function, the increasing pathology of the subendothelial layer, and the clinical outcomes of myocardial infarction, stroke, and a dozen other medical problems. Merely treating cholesterol, blood pressure, and hundreds of other specific pathological findings do nothing to reset the epigenetic changes that lie upstream and that cause those myriad changes. Small wonder that we fail to change the course of arterial disease if our only interventions are mere “stents and statins”. Nor is Alzheimer’s a disease in which beta amyloid and tau proteins passively accumulate over time as they become denatured, resulting in neuronal death and cognitive failure. Alzheimer’s is a disease in which the turnover – the binding, the uptake, the degradation, and the replacement – of key molecules gradually slows down with telomere shortening, culminating in the failure of both glial cell and neuron function, the accumulation of plaques and tangles, and ending finally in a profound human tragedy. The cause is the change in gene expression, not the more obvious plaques and tangles. More Insight is Needed Our lack of insight, even when we exert Herculean efforts – enormous clinical trials, immense amounts of funding, and years of work – is striking for a complete failure of every clinical trial aimed at Alzheimer’s disease. Naively, we target beta amyloid, tau proteins, phosphodiesterase, immune responses, and growth factors, without ever understanding the subtle upstream causes of these obvious downstream effects. Aging, aging diseases, and especially Alzheimer’s disease are not amenable to mere well-intended efforts. Without insight, our funding, our time, and our exertions are useless. Worse yet, that same funding time, and exertion could be used quite effectively, if used intelligently. If our target is to cure the diseases of aging, then we don’t need more effort, but more thought. However well-intentioned, however much investment, however many grants, and however many clinical trials, all will be wasted unless we understand the aging process. Aging is not a passive accumulation of damage, but an active process in which damage accumulates because cells change their patterns of gene expression, patterns which can be reset. Curing Alzheimer’s requires insight and intelligence, not naive hope and wasted effort. Contributing Author: Dr. Michael Fossel earned both his Ph.D. and MD from Stanford University, where he taught neurobiology and research methods. Winner of a National Science Foundation fellowship, he was a clinical professor of medicine for almost three decades, the executive director of the American Aging Association, and the founding editor of Rejuvenation Research. In 1996, he wrote the first book on the telomerase theory of aging, Reversing Human Aging, describing the medical aspects of extending human telomeres, reversing aging, and curing age-related disease. In 2004, he authored the magisterial academic textbook, Cells, Aging, and Human Disease, and in 2011, he coauthored The Immortality Edge, a bestselling discussion of the potential for extending the human lifespan. He currently teaches The Biology of Aging at Grand Valley State University. The world's foremost expert on the clinical use of telomerase for age-related diseases, Michael has lectured at the National Institute for Health and the Smithsonian Institute and continues to lecture at universities, institutes, and conferences throughout the world. He has appeared on Good Morning America, ABC 20/20, NBC Extra, Fox Network, CNN, BBC, Discovery Channel, and regularly on NPR. He is currently working to bring telomerase to human trials for Alzheimer’s disease. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Music connects people to their life history and culture. Music transports people back to happy and sad places such as having attended a concert with friends or as a reminder of a long-gone relative. Listening to or making music is a wonderful way for you and your loved one to get a mini-vacation from illness as well as to stimulate conversation different from what he or she had for breakfast. Clinical case studies show when people who have Dementia listen to the music of their youth they become animated and may tap their feet to the rhythm or sing. Music therapists say that music therapy improves mood and behavior as well as lessens reliance on behavior-modifying medications. Research shows that active involvement is more beneficial than listening to music. Singing and playing music, especially when preparing for a performance, improves focus, attention, and memory. Opportunities to socialize and, perhaps even more importantly, share with others, are another important benefit of active participation. Most people have positive reactions to the popular music of their youth or the kinds of music that reflect their taste and preferences. Therefore don’t assume the person in your care will want to hear Glenn Miller or Bing Crosby. Baby Boomers may prefer Elvis Presley, Buddy Holly, the Beatles, or the Rolling Stones. Some people may favor classical music, jazz, or opera. Enhancing Life with Dementia Through Music There are many simple ways to bring music into your loved one’s life. At home, you can download music from the internet and watch or listen to broadcast performances. Together, you can sing, play a musical instrument, or use bells, sticks, and homemade drums to create a home-style rhythm band. Consider inviting family members, friends as well as other caregivers, and their loved ones to participate in a jam session. Serve coffee and cookies and you have an event! It’s always a nice break to take excursions outside of the home. Combining an early afternoon concert with lunch or an early supper is another way to enjoy a day and enrich a relationship. You can find local and sometimes no-cost events in the calendar section of your local newspaper. Community orchestras and choral groups often give public performances. Senior centers are another place where you can find performances as well as music classes your loved one might enjoy. Many non-profit organizations, such as the Dementia Society of America, sponsor music programs designed especially for people who have dementia and other disabilities. An internet search is an easy way to find music programs and performances in the community where your loved one lives. Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.

Many of us, when unable to answer simple questions about the medications we take, promise to make a list before our next appointment. We know it’s important, but we never seem to get around to doing so. Besides, we are quite sure our prescription history is already a part of our medical history file. However, your doctor may not know about the prescriptions you have received from other clinicians, or if you take dietary supplements such as vitamins or alternative medicine herbals such as echinacea. Conversely, an emergency room doctor or another clinician may not easily access your medical records. The Importance of Keeping Good Medical Records in Dementia Keeping a current record of all the medications your loved one takes is especially important when Dementia is part of the equation. People who have Dementia may see physicians that, in addition to his or her family doctor, include a geriatrician, a neurologist, or a psychiatrist. It’s also quite likely the person who has Dementia will require evaluation and treatment for conditions unrelated to his or her Dementia diagnosis. In addition, the progression of Dementia, memory loss, and other disabilities, makes it imperative that a family member or other caregiver have access to the medication list. As a first step, make a complete list of the medications, supplements, and any herbals your loved one may use. The list, in the form of a table, should include the following information: the name of the medication, the daily dosage, the prescription number, the pharmacy contact information, the prescribing clinician’s name, and contact information, as well as the location of the medication in your loved one's place of residence. You might also want to jot down a few words about any side effects, you or other people may have noticed. As a second step, and on a need-to-know basis, a hard copy of the compiled information should be available to other family members as well as to other caregivers responsible for your loved one’s care. Place another paper copy in a folder or a three-ring binder and leave it by the telephone. The folder, in addition to the medication list, should also contain other important names and numbers such as the contact information for your loved one’s doctors, as well as for the local hospital, ambulance service, and emergency room. Create a file on your computer hard drive that contains the all information you need to oversee your loved one’s care. Doing so will make it easy to update your loved one’s medical records. Do keep in mind that only certain people should have access to your loved one’s Medicare, health insurance, and credit card information as well as other types of confidential information. Doing so will help to prevent financial abuse and identity theft. And while you are at it – this is a good time to finally get around to tabulating your medications and other types of personally important information! Content Contributor: Janet Yagoda Shagam, Ph.D., is a freelance medical and science writer and the author of " An Unintended Journey: A Caregiver's Guide to Dementia.", available through Amazon. Please visit our Author's page to learn more and find this title. Disclaimer: Dementia Society of America (DSA) provides educational content only and does not offer medical advice. Always consult a qualified healthcare professional before making changes to your medical care. DSA content is created by both human and computer-generated means and is reviewed for accuracy; however, errors may occur. Views expressed by third-party contributors do not necessarily reflect those of DSA. Unless expressly stated, DSA does not endorse or guarantee any third-party products, services, organizations, or external content. All DSA content is copyrighted and/or trademarked and may not be used without written permission.