Early-Onset Alzheimer’s Disease: A Resource List
Frontotemporal disorders occur when damage to the frontal and temporal lobes of the brain causes changes in behavior, personality, language, and movement. These disorders are common causes of dementia in people under age 65. Understanding them can help people with the disorders, their families, and healthcare professionals know what to expect and how to cope with medical, emotional, financial, and other challenges that arise.
The resources listed below pertain to the major types of frontotemporal disorders. Many of the items listed are available online for free. Others must be purchased. To purchase an item, please contact the organization listed in the “available from” section of the description to confirm the current price and payment information. Items may also be sold by retail and online booksellers.
The items on this resource list are organized in four categories:
- General Resources
- Frontotemporal Dementia
- Primary Progressive Aphasia (PPA)
- Movement Disorders—including Corticobasal Syndrome (CBS) and Progressive Supranuclear Palsy (PSP)
General Resources on Frontotemporal Disorders
These resources offer information about all types of frontotemporal disorders.
The website of the nonprofit Association for Frontotemporal Degeneration offers detailed information about frontotemporal disorders and resources for caregivers. It describes how the disorders differ from Alzheimer’s disease and provides information about their diagnosis, treatment and management, and genetics. The website also includes a list of support groups, a section for healthcare professionals, and a newsroom. Free online access.
Frontotemporal Dementia (University of California, San Francisco)
The website of the University of California, San Francisco, Memory and Aging Center provides detailed, consumer-friendly information about frontotemporal disorders. The “Living with FTD” section includes practical tips for daily care and advice about care options and clinical trials. The “Community & Support” section has personal stories from caregivers and resources such as support groups. Videos highlight the difficulty of obtaining a diagnosis, as well as symptoms and caregiving issues. Free online access.
Frontotemporal Dementia (Dementia Weekly/Alzheimer’s Weekly)
Part of the Dementia Weekly/Alzheimer’s Weekly website, this resource includes articles, forums, and videos about frontotemporal disorders. Topics include types of disorders, disease stages, treatments, and research. Free online access.
This website offers information and advice for people with frontotemporal disorders and their caregivers. The “caregiver issues” tab features brief descriptions and web links about managing behaviors, safety, late-stage disease, taking care of yourself, and helping children cope. A checklist for caregivers highlights legal, insurance, safety, and other issues. Free online access.
Visitors to this website from the National Institutes of Health Office of Rare Diseases Research can enter a term in the search box to find a brief description of a disease and links to more detailed information from the National Library of Medicine and other sources. Links to information about support groups, clinical trials, scientific conferences, and more are included. Free online access.
Also see articles about rare, inherited forms of frontotemporal dementia caused by genetic mutations, available from the National Library of Medicine’s Genetics Home Reference series:
- CHMP2B-related Frontotemporal Dementia
- Frontotemporal Dementia with Parkinsonism-17
- GRN-related Frontotemporal Dementia
Publications about FTD
The Banana Lady and Other Stories of Curious Behavior and Speech (2006, 237 pages)
Neurologist Andrew Kertesz chronicles changes in personality, behavior, and relationships in 19 people with frontotemporal disorders. Each chapter explains in layman’s terms the brain changes underlying the disorder, along with the social and cultural aspects of the behavior changes. The book includes a glossary; caregiving tips; and explanations of the disease’s biology, diagnosis, genetics, and treatment.
Available from online bookstores. $19.57.
The Doctor Thinks It’s FTD. Now What? (PDF, 605K) (2013, 36 pages)
This booklet from the Association for Frontotemporal Degeneration guides people newly diagnosed with a frontotemporal disorder and their caregivers through the many issues they will face. The main message is to get help because no one should have to handle FTD alone. First, the booklet suggests ways to work with doctors to get an accurate diagnosis. It also discusses how to create a care team of medical and other professionals, friends and family; specific legal and financial issues to address; safety issues (which vary with the particular FTD diagnosis); and everyday coping strategies. A checklist for each area and a list of resources are included. Free online access; bulk orders are available for a nominal fee.
Frontotemporal Dementia (2011)
A web module for consumers from the Mayo Foundation for Medical Education and Research offers an overview of frontotemporal dementia, including its symptoms, causes, and risk factors. The module also provides information about preparing for a doctor’s appointment, tests and diagnosis, treatments, and coping and support. Free online access.
This online fact sheet from the National Institutes of Health offers a brief history of frontotemporal disorders, along with an overview of what scientists know about the disorders’ underlying pathology, prevalence, genetics, and diagnostic criteria. Free online access.
This booklet from NIA’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center describes frontotemporal disorders as conditions that result from damage in the brain’s frontal and temporal lobes, which in turn causes difficulties in behaviors, emotions, language, and movement. It explains the three major types of frontotemporal disorders and reviews their causes, diagnosis, common symptoms, and treatment and management. The booklet addresses caregiving challenges and includes a resource list. Free online access.
Mayo Clinic Guide to Alzheimer’s Disease (2006, 350 pages)
Although primarily targeted to people interested in Alzheimer’s disease, this book contains a chapter about frontotemporal disorders. It describes differences between these disorders and Alzheimer’s disease, as well as the types of disorders, the brain changes underlying them, and clinical symptoms. The book also describes diagnostic tests and the limited treatments that exist.
This online fact sheet from the National Institute of Neurological Disorders and Stroke (NINDS) provides an overview of all frontotemporal disorders (here called frontotemporal dementia), including what they are, how they are treated, and the prognosis for people with these disorders. Links to related clinical trials and publications are provided. Free online access.
Indianapolis: Frontotemporal Dementia Research Comes of Age (PDF, 369K) (2010)
This Alzheimer Research Forum report shares recent research advances presented at the 7th International Conference on Frontotemporal Dementias, held in October 2010. It covers presentations on diagnosis and classification of dementia subtypes, neuroimaging research, the molecular pathways involved in the disorders, and the development of new therapies and clinical trials. Free online access.
Understanding the Genetics of FTD: A Guide for Patients and Their Families (PDF, 1.4M) (2012, 24 pages)
Most frontotemporal disorders are of unknown causes, but 15 to 40 percent of all cases have a genetic origin. This booklet from the University of Pennsylvania Center for Neurodegenerative Disease Research provides a brief “Genetics 101” overview and describes the specific genes involved in FTDs. It explains how genetic mutations are “typos” in DNA that result in proteins that do not function properly and lead to disease. The booklet gives information about genetic testing, including how it works, where to get it, whom should get it, and what the results mean. A detailed Q and A reveals that people with a genetic mutation for FTD could be at higher risk for the disease but do not always develop it. A glossary of terms and list of resources are included. Free online access.
What About the Kids? Frontotemporal Degeneration: Information for Parents with Young Children and Teens (PDF, 1.6M) (2012, 32 pages)
This booklet from the Association for Frontotemporal Degeneration is aimed at spouses of people with frontotemporal disorders who have children living at home. Its goal is to help them help their children understand the disorder affecting a parent and how to cope with it—a challenge as both child and parent undergo changes. The guide discusses talking about FTDs with children of different ages, changing roles in the family, keeping children physically and emotionally safe, and asking for help. It also includes a section about FTD genetics and a list of resources. Free online access.
An online fact sheet from the Hospital of the University of Pennsylvania Center for Frontotemporal Dementia describes the types of frontotemporal disorders, their underlying brain changes, symptoms, and genetic factors that play a role in about 40 percent of cases. The fact sheet stresses that treatment addresses symptoms but cannot stop the disease itself. Free online access.
Frontotemporal Disorders DVDs and Videos
Disordered (2007, 74 minutes)
This documentary by Dutch psychologists Klaas Jansma and Pieter Wolswijk portrays the impact of frontotemporal disorders on three individuals and their families. Originally filmed in Dutch, it is available with English subtitles. See a trailer of the DVD.
Available from Klaas Jansma. $27, including shipping and handling. E-mail Klaas Jansma.
It Is What It Is. Frontotemporal Degeneration: Tragic Loss, Abiding Hope (2011, 18 minutes)
This film weaves together the stories of four families as they confront frontotemporal disorders. Poignant interviews with caregivers show puzzling early symptoms, difficulty with diagnosis, a lack of emotional support, and family hardships. The DVD comes with a companion booklet.
Planning for Hope: Living with Frontotemporal Disease (2010, 53 minutes)
Six families share their stories of coping with frontotemporal disease (FTD) in this documentary produced by Susan Grant, a financial advisor who developed FTD, and her caregiver Cindy Dilks. The film features medical research leaders, financial and legal professionals, and families who offer perspectives on hope for better outcomes for those affected by FTD. Issues such as the difficulty of getting a diagnosis, the need for financial planning, and scientific advances are discussed.
Resources for Frontotemporal Dementia
The resources in this section are specific to frontotemporal dementia, which involves changes in personality, behavior, and judgment.
An Evolution of Love: Life and Love with Frontotemporal Dementia (2007, 120 pages)
This tribute to the late Robert Dykes Jr., who was diagnosed with frontotemporal dementia at age 47, was written by his wife and daughter. The book introduces readers to Bob and his courageous attempts to cope with the disease. The struggles to obtain a diagnosis, cope with the “new” Bob, and make difficult decisions about care are conveyed in journal entries that reveal a family’s love and desire to share their experiences with caregivers on the same difficult journey.
Published by Georgetown Publishing LLC. $13 in print and $9.99 and up as an e-book. Order online at An Evolution of Love.
This online fact sheet from the Association for Frontotemporal Degeneration describes behavioral variant FTD as a form of frontotemporal degeneration characterized by progressive changes in personality, emotional blunting, and/or loss of empathy. Behavioral, emotional, and neurological symptoms are described, as are the limited treatments that exist. Free online access.
A web page from the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease describes frontotemporal degeneration as dementia that causes changes in personality, ability to concentrate, social skills, motivation, and reasoning. The page links to articles on behavioral variant FTD, posterior cortical atrophy, and corticobasal degeneration and progressive supranuclear palsy. Free online access.
What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia (2008, 360 pages)
The second edition of this caregiver’s guide contains practical information for both healthcare professionals and families. Topics include the medical aspects of frontotemporal dementia; daily care, including communicating, eating, activities, and creating a safe environment; and caregiver resources. The final part of the book discusses caregiver concerns, such as respite care and coping with loss and grief.
Resources About Primary Progressive Aphasia
These resources describe primary progressive aphasia (PPA) and its major subtypes: semantic PPA (also called semantic dementia), agrammatic PPA (also called progressive nonfluent aphasia), and logopenic PPA.
Primary Progressive Aphasia Websites
Available from the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease, this website offers resources and support for people affected by PPA and their family members. It answers frequently asked questions; describes diagnostic criteria; provides a list of support groups across the United States; and offers information related to PPA research, including a list of researchers and clinical studies. Free online access.
Primary Progressive Aphasia (Northwestern University)
A web page from the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease provides an overview of PPA and its relationship to dementia, an article that describes communication strategies, and other information for both individuals with PPA and the people they converse with. “Family and Friends” links to an article about PPA’s impact on employment and family relationships. The web page also links to related organizations and a list of support groups. Free online access.
Primary Progressive Aphasia (National Aphasia Association)
This resource from the National Aphasia Association includes articles about PPA, information about its diagnosis and management, a list of clinical programs that specialize in PPA, and personal stories by family caregivers. The website also includes an online bookstore and suggestions for finding a speech-language pathologist. Free online access.
Articles and Fact Sheets on Primary Progressive Aphasia
A Thief that Robs the Brain of Language (May 2, 2011)
This New York Times article by Jane E. Brody tells the story of Steve Riedner, a Chicago area man with PPA, and how he and his family have coped with his loss of language ability. Interviews with researchers, including Dr. M. Marsel Mesulam of Northwestern University, describe speech therapy and other tools that help people cope. Free online access.
People with this type of PPA have word-finding difficulty and speak slowly with many pauses as they search for the right words. Behavior and personality remain intact until the later stages of the disease. This online fact sheet from the Association for Frontotemporal Degeneration provides an overview of the disorder, including key clinical features and prognosis. Free online access.
As described in this online fact sheet from the Association for Frontotemporal Degeneration, this type of aphasia is a language disorder that begins with hesitant, effortful speech but continued ability to understand what others say. The ability to speak fluently, read, and write gradually declines. Treatment options are minimal, though speech therapy may help. Free online access.
This online fact sheet from the Mayo Foundation for Medical Education and Research describes PPA symptoms, including word-finding pauses during speech and difficulty naming objects, and discusses how speech therapy may help. It also suggests ways that family members can make communication easier. Free online access.
This type of PPA is characterized by gradual deterioration in the ability to understand words and recognize objects. Speech remains normal but, without keywords, becomes harder to understand. This online fact sheet from the Association for Frontotemporal Degeneration details these symptoms and suggests treatment and management approaches for the disorder. Free online access.
FTD Movement Disorders Resources
These resources provide information about movement disorders associated with frontotemporal lobar degeneration, including corticobasal syndrome (CBS; also called corticobasal degeneration) and progressive supranuclear palsy (PSP). Resources specific to CBS and PSP follow.
The website of the organization CurePSP offers a wealth of information for people with frontotemporal movement disorders and their caregivers. In addition to general overviews of PSP, CBS, and related brain diseases, the site offers caregivers online support groups, state-by-state listings of in-person support groups and peer supporters and an active online discussion group. Educational resources include how-to videos for caregivers and a section for healthcare professionals. Free online access.
A Guide for People Living with PSP and CBD (PDF, 1.8M) (2007, 122 pages)
A comprehensive guide from CurePSP for people with PSP or corticobasal degeneration (CBD) and their caregivers, this book describes the conditions and advises readers about day-to-day issues such as visiting doctors and giving up driving. In the section about caregiving, a husband who cared for his wife with PSP tells his story, mixing practical advice with strategies for maintaining emotional strength. The guide also includes a chapter on support groups and a caregiving glossary. Free online access.
Understanding the Connection: ALS and Frontotemporal Lobar Dementia (PDF, 273K) (2012)
This summary of a February 2012 webinar led by Catherine Lomen-Hoerth, professor of neurology at the University of California, San Francisco, explores the connection between amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) and frontotemporal dementia. About half of people with ALS have cognitive and/or behavioral problems serious enough to be diagnosed as dementia. Having both conditions can lead to shortened lifespan and more difficult caregiving than in people without dementia. Free online access.
Corticobasal Syndrome Resources
CBD: Some Answers (PDF, 239K)
A consumer-friendly overview of corticobasal degeneration, this online fact sheet from CurePSP describes the causes and brain changes of this progressive neurological disorder, as well as early and later symptoms, which involve movement, cognition, and language problems. Diagnostic tests—and frequent misdiagnoses—as well as treatment are also discussed. Free online access.
This online article from the Association for Frontotemporal Degeneration describes corticobasal syndrome as a progressive neurological disorder that affects movement, cognition, or both. The article lists key symptoms, such as rigidity, tremor, and the loss of purposeful movement, as well as the syndrome’s physical brain changes and therapies that can help manage symptoms. Free online access.
This online fact sheet from the National Institute of Neurological Disorders and Stroke describes CBD and initial symptoms that may be similar to those of Parkinson’s disease (for example, poor coordination, rigidity, and impaired balance) but on one side of the body. It also discusses CBD treatment, prognosis, and research. Free online access.
Progressive Supranuclear Palsy Resources
An online fact sheet on the Federal Government’s MedlinePlus health information website offers a brief explanation of PSP, including its symptoms, symptom management, and complications. Free online access.
This article discusses PSP movement and eye symptoms, the lack of a cure, and medications and other measures that can help manage symptoms in some people. It emphasizes the importance of a strong support system for living with PSP. Free online access.
This online fact sheet describes the key clinical and pathologic features of PSP and the genetics of the disease. PSP’s poor prognosis and sometimes fatal complications are noted. Free online access.
This fact sheet defines PSP as a rare brain disorder that causes serious, permanent problems with control of gait and balance. It describes PSP symptoms, including those that help distinguish the condition from Parkinson’s disease. Theories about PSP’s causes are explained, as are diagnosis and treatment of symptoms. Free online access and available in Spanish.
Progressive Supranuclear Palsy (PSP): Some Answers (PDF, 489K) (2011, 12 pages)
CurePSP’s layman’s medical guide to PSP is written by Lawrence I. Golbe, professor of neurology, Robert Wood Johnson Medical School, who is CurePSP’s director of research and clinical affairs. In a question-and-answer format, Dr. Golbe explains how PSP differs from Parkinson’s disease (a common misdiagnosis) and how movement, vision, and speech symptoms change as the disease progresses. Drug and nondrug treatments are discussed, along with what is known about PSP’s causes and genetics. Available in print at no charge. Free online access.