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A Caregiver's Guide to Alzheimer's Disease

caregivers guide to alzheimers disease

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When once familiar tasks start feeling like completely new actions, an Alzheimer’s diagnosis may be on the horizon. Alzheimer’s Disease is a progressive brain disorder that results in memory loss, language deficiencies, and other cognitive impairments. It is the most common form of dementia that is affecting millions of people all over the world. While there is no current cure for Alzheimer’s, there are many treatments, recommendations, and help centers to improve the quality of life of both patients and caregivers as they go through this challenging medical assistant programs
We have provided an extensive list of resources for all those affected by Alzheimer’s. From research to personal accounts, suggested activities to support networks, we have gathered all things Alzheimer’s. If you are looking for books, online resources, communities, and medical centers on Alzheimer’s, then browse through the sites below to find what you need.

Quick Facts – Book Materials – Online Resources –
 Online Forums & Communities – Best Medical Centers

Quick Facts

  • The human brain changes over time, but the abnormal occurrence of plaques and tangles is a sign of dementia-related disorders. While scientists do not know the exact connection between these abnormalities and Alzheimer’s, they do understand that nerve cells are being blocked, causing memory loss and other cognitive disabilities (Alzheimer’s Association).
  • Alzheimer’s usually affects older victims, especially those over 60. The disease slowly progresses, affecting thought, memory, and language in subtle then more apparent ways (Medline Plus).
  • More than 5 million Americans are currently affected by Alzheimer’s and are expected to reach 15 million by 2050. These numbers reach greater proportions internationally, with a current 26 million affected by the disease and a 106 million predicted by 2050 (Alzheimer’s Disease Research).
  • Women are more likely to develop Alzheimer’s than men because women tend to have longer life expectancies and hence are more vulnerable to aging-related diseases (Women’s HealthCare Forum).
  • Genetics is only one of the factors that contributes to Alzheimer’s. While researchers do not know what exactly causes Alzheimer’s, there has been scientific evidence linking four chromosomes to the disease: 1, 14, 18, and 21 (WebMD).

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Book Materials

  • The 10 Best Questions for Living with Alzheimer’s by Dr. Dede Bonner. The author is a questioning expert who helps people find the right answers by asking the right questions. Her book guides patients and caregivers to the kinds of questions they should be asking soon after a diagnosis that will guide them on the right track to dealing with the debilitating effects of the disease.
  • The Alzheimer’s Answer Book by Charles Atkins. Get answers to all your questions about Alzheimer’s in this Q&A style book written by a professional geriatric psychiatrist.
  • The Alzheimer’s Advisor by Vaughn E. James. This book offers caregivers practical advice on how to deal with the legal dilemmas surrounding Alzheimer’s.
  • I’m Still Here by John Zeisel. The author is a popular sociologist who co-founded Hearthstone Alzheimer Care and Artists for Alzheimer’s program. In this insightful book, he shows readers that a diagnosis does not mean a patient is out of reach; rather it just implies that caregivers need to put more effort in connecting and forming relationships with those affected by the disorder.
  • Learning to Speak Alzheimer’s by Joanne Koenig Coste. The author takes a humanistic approach to dealing with Alzheimer’s. Coste explains the importance of creating a positive environment where caregivers and patients can communicate and empathize with each other.
  • Will I Be Next? by Lois Bristow. The protagonist of this novel Bea Gorman is from a family line that is affected by Alzheimer’s. Constantly fearing that she will be next, Gorman shares an encouraging and brave tale about having parents and siblings with the disease. She also offers straight-forward advice on how to deal with Alzheimer’s in the second portion of the book.
  • Creating Moments of Joy (by Jolene Brackey. While people with dementia and Alzheimer’s may not remember certain things, this book encourages caregivers to not lose hope and to keep trying to form moments that will bring a smile to the faces of their loved ones. Brackey explains that, “five minutes later, they won’t remember what you did or said, but the feeling you left them with will linger.”
  • Alzheimer’s from the Inside Out by Richard Taylor. This book was written by a psychologist diagnosed with Alzheimer’s. Taylor takes us through a first-person account of what he goes through as the disease progresses, offering an insightful and rare look into the thoughts of one losing memory and cognition abilities.
  • The Alzheimer’s Action Plan by P. Murali Doraiswamy, Lisa P. Gwyther, and Tina Adler. The collaboration of one of the leading researchers, social workers, and writers of this brain disorder provides an insightful look into what patients and caregivers have to face in dealing with Alzheimer’s. This book communicates all the latest information on Alzheimer’s in an organized, step-by-step way to reach out to the millions affected by this disease.
  • Keeping Busy by James R. Dowling. Running out of therapeutic activities to engage the minds of persons with dementia? Well, this book provides a whole range of things patients can do that will improve their quality of life.
  • Alzheimer’s Angels by Dorothy Womack. This book gives Alzheimer patients and caregivers a chance to read some inspirational, sentimental, and beautiful poetry and prose on the disease and how it affects its victims.
  • The 36-Hour Day by Nancy L. Mace. Families affected by Alzheimer’s or dementia-related disorders find themselves seeking the guide and comfort offered in this book. Mace takes a knowledgeable and compassionate look at what families have to face and provides helpful recommendations in being good caregivers to their loved ones.
  • Forget Memory by Anne Davis Basting. While memory loss can be the scariest and hardest things that families have to deal with for demented loved ones, Basting takes an optimistic look and encourages readers of this book to enjoy the present. This book offers an important message: storing memories is not as important as living and creating them.
  • The Myth of Alzheimer’s by Peter J. Whitehouse. The book raises more questions and different answers that challenges long-held beliefs about Alzheimer’s. The author aims to “liberate [patients] from this crippling label, teach us how to best approach memory loss, and explain how to stave off some of the normal effects of aging.”

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Online Resources

  • Alzheimer’s Association: This is a voluntary health organization that provides information, education, and support for all those affected by Alzheimer’s. On this site, you can also receive information about how to participate in the cause.
  • AlzOnline: Alzheimer’s Caregiver Support Online:  People affected by Alzheimer’s also includes those caring for loved ones going through this disease. This is an online place where caregivers can receive tips on how to cope with the different stages and challenges of Alzheimer’s.
  • National Institute on Aging:  This is the go-to place for information on all Alzheimer’s Disease Centers (ADCs) in America. The National Institute on Aging currently funds 30 ADCs that does research on Alzheimer’s, aging, and other dementia-related disorders.
  • Medical News Today:  All the latest Alzheimer and dementia news from all over the world are here on this site. It also provides links to other sites dedicated to research on this disorder and a video library for patients and caregivers to receive useful advice.
  • TopTenReviews Medical Alert System Reviews: This is an independent online review site that tests nd reviews medical alert systems. This site also has a Senior Care section chalk-full of helpful elderly care guides and information.
  • The Alzheimer’s Project:  HBO Documentaries created The Alzheimer’s Project to feature all the latest research on the brain disorder. Second to cancer, Alzheimer’s is affecting Americans in a very significant way and is one of the most-feared illnesses. The videos created by the HBO award-winning team seeks to make people more aware of its signs, symptoms, treatments, and preventions.
  • ElderCare Online’s Alzheimer’s Care Channel:  This is an online site providing caregivers with the most extensive information on caring for those affected with Alzheimer’s.
  • MayClinic Alzheimer’s Disease:  Information on this site comes in an organized and diversified manner through summaries and in-depth descriptions. It also features slides, podcasts, expert answers, and an expert blog that focuses on issues relating to Alzheimer’s.
  •  An Alzheimer’s diagnosis can be a scary, challenging realization for caregivers. Hence this site is a resource for caregivers who need more information, want more advice, and seek more help in dealing with a loved one affected by this disease.
  • Family Caregiver Alliance:  This is a nonprofit organization that represents caregivers who are offering long-term care at home for patients and loved ones. The site has all the latest information for caregivers, including policy and research, advice, a community newsletter, and programs to increase the quality of caregivers all over America.
  •  Find all the latest reports on Alzheimer’s and dementia on this site from medical and scientific communities.
  • The Alzheimer Spouse:  A great resource for all spouses of those suffering from Alzheimers and Dementia. Touching stories, news, and helpful articles.
  • Caregivers Guide to Managing Stress, Anxiety, Frustration, Burnout, Etc.: This guide offers resources for noticing the signs of  caregiver stress and burnout and to seek help before feeling completely overwhelmed.

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Online Forums & Communities

  • Alzheimer’s Disease Support Group :  This is an interactive and informative social network for those who have Alzheimer’s. People can create their own profiles, join discussions relating to the disease, and write diary entries about their experiences that they can share with the community formed through this site.
  • Alzheimer’s Forum:  Start talking about things regarding Alzheimer’s in a very active forum that already has over 200 discussion topics and about 2000 posts. You will find everything, from support to advice of how to care for the disease as it progresses.
  • Alzheimer Research Forum:  One of the smart ways in dealing with Alzheimer’s is finding out all the latest information about the disease. This research forum sums up the purpose of sharing research in their tag line: “networking for a cure.”
  • Alzheimer Disease Forum:  This online community gathers members and doctors in thoughtful and reflective discussions about all things Alzheimer’s: symptoms, effects, advice, and more. Featured doctors on the site are from a wide variety of backgrounds and will be able to answer any questions posted in the forum.
  • Talking Point:  For all those affected by dementia, this support network features blogs, discussions, pictures, and social groups. Members can connect on many different levels, from talking about their personal experiences with dementia to conversing about their shared interests in cooking.
  • The ElderCare Forum:  Topics discussed on this forum give members a chance to learn, connect, and even vent. Members can learn about Alzheimer’s, dementia, and what it takes to be a supportive caregiver. All those affected by this disease can connect and vent with other members in different conversations.
  • The Alzheimer List:  Receive emails from an online support group that gathers people with Alzheimer’s, caregivers, and medical professionals. This email list will connect subscribers to a community of people that they can forward and receive Alzheimer related information.
  • Alzheimer’s Association Online Community:  Discuss anything about Alzheimer’s and get feedback from a vibrant community of people interested and knowledgeable about talking about the disease. This forum is hosted by the Alzheimer’s Association, the leading support and research organization on Alzheimer’s.
  • Alzheimer’s Disease:  With over 80,000 members, this forum welcomes people from all walks of life who have been impacted by Alzheimer’s in some way. Even with such a large membership, people on this site feel comfortable sharing personal anecdotes and offering comforting words of healing and advice.
  • Topix Alzheimer’s Forum:  After being around for over four years, this forum continues to contribute to the discussions about Alzheimer’s. Through the sharing of stories and information, members and guests alike can receive information about conferences, research, and interesting news features relating to the disease.
  • Alzheimer’s Association Chat Rooms:  Feel like talking to someone about Alzheimer’s, join a chat room and start communicating.
  • Full Circle of Care Forum:  For those caring for loved ones with Alzheimer’s, this forum allows you to connect with other caregivers about caring practices and other insightful information on treating those going through its emotional symptoms.
  • Women’s HealthCare Forum on Alzheimer’s Disease:  This is an online resource about Alzheimer’s and women. It explains how women are affected differently by Alzheimer’s and empowers them with how to live with the disease.
  • Dementia Guide:  Not only does this site offer information about dementia and its related diseases, but it also gives those affected with dementia a chance to track the symptoms and changes they are going through over time.
  • Dementia Advocacy and Support Network International:  This international organization seeks to create an online support network for all those affected by dementia.

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Best Medical Centers for Alzheimer’s Patients

  • Massachusetts Alzheimer’s Disease Research Center:  As one of the two original Alzheimer’s Disease Centers (ADCs) funded by the National Institute of Aging, the Massachusetts branch looks to maintain its role as a leader in aging and dementia-related research. It fosters a rich environment for innovative research through its collaborations with various medical and scientific communities.
  • Memory and Alzheimer’s Treatment Center at Johns Hopkins Hospital:   This treatment center collaborates with teams in the psychiatry, neurology, and geriatric departments to give patients a thorough diagnosis and the best help possible.
  • Cognitive Neurology and Alzheimer’s Disease Center:  A multidisciplinary approach guides this Northwestern research center to look at the brain’s role in dementia-related diseases. The center uses this knowledge to treat patients with these brain disorders and train future researchers in the hope to one day find an answer to these cognitive impairments.
  • Rush Alzheimer’s Disease Center at Rush University:  The focus of this medical center is to reduce the symptoms of Alzheimer’s and other diseases related to age and dementia. Research here emphasizes four main areas: risk factors, neurology, diagnoses and treatment.
  • Wisconsin Alzheimer’s Disease Research Center at University of Wisconsin:  At the forefront of memory research, the University of Wisconsin seeks to find a treatment and cure to the memory problems associated with Alzheimer’s and the process of aging.
  • UCSF Memory and Aging Center:  UCSF provides patients with quality care and specialists from various fields, from neurology to speech pathology. The center conducts research on the cognitive problems and the causes and treatments for brain diseases such as Alzheimer’s.
  • UCLA Mary S. Easton Center for Alzheimer’s Disease Research:  Taking a “therapeutic imperative” approach, the center focuses on diagnosing symptoms for pre-dementia early on. It looks to apply treatments to slow, and one day prevent, the progression of more terminal stages of dementia and Alzheimer’s.
  • Emory Alzheimer’s Disease Center:  As one of the few comprehensive Alzheimer’s center in the southern United States, Emory does thorough research focused on finding a cure to the disease. This research center mainly looks at the “chemical and pathological changes in the brain.”
  • Fisher Center for Alzheimer’s Research:  Nobel laureate Dr. Paul Greengard and his team of renowned scientists are pioneering some innovative research on preventing Alzheimer’s.
  • Alzheimer’s Research Center:  This international research center is located in St. Paul, Minnesota. One groundbreaking finding that this center has contributed to Alzheimer’s is an “intranasal insulin delivery method” that increases insulin in the brain, which improves memory, attention, and other cognitive impairments.

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