The ultimate dementia resource guide
Have you recently been diagnosed with Alzheimer’s disease or other dementia? Are you a care partner or family member of a person with Alzheimer’s disease or other dementia? Not sure where to start with learning about the disease? This resource guide will help you begin your search and stay informed.
The resources listed below are publicly available and are easy to read, use, and navigate. They are also current and credible. How do we know they’re credible? When we evaluate resources, we look to answer the following questions:
Who publishes it? How long have they been around? What kind of reputation do they have?
Who creates content for it? What kind of expertise do the content authors have?
How current is the content? How often is it updated? By whom is it updated?
Here’s our list of recommended reads. Please note that none of these resources is a substitute for professional medical advice.
The Alzheimer’s Disease Education and Referral Center contains comprehensive, authoritative information about symptoms, diagnosis, and treatment of Alzheimer’s disease. It also contains links to dementia-related fact sheets, research reports, and clinical trials. For care partners, this website offers tip sheets and resources about everyday care, communication, legal and financial issues, and safety.
Languages: English, Spanish
The MedlinePlus website is a trusted consumer health information provider. It contains reliable, up-to-date information on more than 1000 diseases and health issues, including Alzheimer’s disease. The Alzheimer’s disease topic provides links to web content, videos, and PDFs about symptoms, diagnosis, prevention, treatments and therapies, genetics, statistics and research, latest news, and clinical trials.
Languages: English, Arabic, Bosnian, Chinese, French, German, Hindi, Italian, Japanese, Korean, Polish, Portuguese, Russian, Somali, Spanish, Ukrainian, Vietnamese
The Dementia Action Alliance works to improve the lives of people with dementia and promotes a person-centered approach to care. The website features a blog (many of the blog posts are written by people with dementia or their care partners) and a comprehensive resource center containing links to blogs, Facebook pages, reports and white papers, books (many of which are written by people with dementia or their care partners), videos and films, and websites. Many of the resources listed aim to provide readers with a sense of what it feels like to be a person with dementia or a care partner.
Maintained and curated by people living with dementia, the Dementia Alliance International website provides easy access to news articles, blog posts, videos, publications, and resources with a particular focus on eradicating stigma and promoting human rights of people living with dementia. If you’re interested in learning about dementia advocacy efforts, this website is a must-read.
The Alzheimer Society of Canada website provides easy-to-read content about living with dementia or caring for someone with dementia. It also contains links to several dementia-related websites and PDF publications, By Us For Us© guides (a series of short books written by people with dementia and their care partners), and current Canadian research studies on Alzheimer’s disease and other dementias.
Languages: English, French
Consumer Health Databases
Public libraries often provide free access to consumer health databases. Contact your local library to find out which consumer health databases are available to you.
Consumer Health Complete [subscription required]
This consumer-focused database hosts a comprehensive collection of nearly 5000 health journals, magazines, reference books, encyclopedias, images, pamphlets, videos, and reports. Using the robust search function, you can quickly find more than 8000 resources about Alzheimer’s disease and other dementias. You can also narrow search results easily to find exactly what you’re looking for.
Health and Wellness Resource Center [subscription required]
Designed for the everyday consumer of health information, this database offers an exceptional selection of full-text medical journals, reference resources, multimedia, health magazines, newsletters, and more. If you have a question about health-related issues (including Alzheimer’s disease or other dementia) or alternative health practices, this database is a go-to resource.
Encyclopedia of Alzheimer’s Disease, 2nd edition (Elaine Moore, 2012)
The updated edition of this reference work contains an alphabetical list of terms with definitions for concepts related to symptoms, treatments, drugs, physiology, and more. Definitions do contain some medical language, but illustrations help to make the content more understandable. This book also contains a list of care facilities throughout the United States and a very helpful bibliography.
The Encyclopedia of Alzheimer’s Disease, 2nd edition (Carol Turkington & Deborah Mitchell, 2010)
This book contains an alphabetical list of more than 500 entries covering many aspects of Alzheimer’s disease, including symptoms, causes, dementia care, memory-related brain anatomy, treatments, and drugs. Entries are easy to read and explain complex concepts with very little medical jargon. This highly recommended reference work also contains useful forms and comprehensive further-reading lists.
The 36-Hour Day, 6th edition (Nancy Mace & Peter Rabins, 2017)
Now in its 6th edition, this guide offers valuable, clear information for families and professional caregivers of people with dementia. It contains excellent and thoughtful content on a very broad range of topics, including issues with daily care, medical issues, behavioral changes, caregiver stress, financial and legal issues, long-term care, and more. It also contains an up-to-date resource list.
This active, ad-free blog provides access to well written, easy-to-read blog posts on many topics, including diagnosis, care-giving, prevention, advocacy, and more. Content posted on the blog is managed by a blog team made up of a cognitive neurologist, researchers, and dementia care experts. All posts encourage conversation through a commenting feature. From the blog, you can also access alz.org, which contains content and resources on all aspects of Alzheimer’s care, support, and research.
This blog contains over 1000 curated videos, Ted talks, and news articles on many aspects of Alzheimer’s disease and dementia, including advocacy, spirituality, research, food and health. It also contains comprehensive book reviews. Subscribing to the blog’s weekly newsletter is an excellent way for people with dementia and their care partners to keep up with the latest news.