Then and Now: A Quest for Information About Dementia

Imagine your loved one is showing symptoms of cognitive decline or was diagnosed with Dementia. You need to investigate and understand more about what their future may look like and how you can support them as their loved ones.

Say it's 1980. Where would you start? You might pick up the phone to talk with your friend whose mother had Dementia. Or you’d head to the public library. Pulling open the long drawers of the alphabetical card catalog, you would flip through the titles and copy call numbers of books that might help. Next, scan the shelves, find the books, peruse their table of contents, take them to a table, scan, read, and take handwritten notes.

In 1995, you may supplement the card system with a computer that helps you find articles in physically bound periodicals stacked on library shelves. You may find yourself sitting in front of a boxy machine through which you view items stored on microfilm. These tasks take attention and patience, time, and persistence.

Jump ahead to the year 2000. Computers have made their way into homes, schools, and public libraries. Instead of reading books and magazines, you search the internet for “Dementia” and read the resulting information- book excerpts, news articles, journal publications, credible scientific research, and statistics on your screen.

Return to the present—a new Dementia diagnosis. So much has been learned and shared. So much information is available to you, so much so that it may feel overwhelming. Where do you start? Of course, all the printed resources remain available at your library and local bookstore. Streaming video content has become a fixture. Documentaries, non-fiction television series, university lectures, courses, and professional presentations are all available with a point and click. The key is to find sources that are credible and trustworthy.

A Valuable Resource for Learning About Dementia: The Dementia Society of America

A great starting place is our website Dementia Society of America. In an easy-to-use format, it will guide you to the practical information a family member or caregiver needs to understand and manage day-to-day concerns while caring for a loved one with Dementia.

Should you want to take a deep dive into the types of treatments for and current research on Dementia, the site will connect you to valuable, credible sources. One such source is the National Institute on Aging: Alzheimer's Disease and Related Dementias page, compiled by the U.S. Health and Human Service Department.

To examine specific topics like palliative care, agitation in your loved one, communication techniques, and so much more, explore the Dementia-specific programs offered at Dementia Unplugged. Hearing the thoughts and experiences of experts and practitioners in the field can make a lasting impression on your care and understanding of those with Dementia.

This approach is not unlike that phone conversation you may have had in 1980. The difference is that the questions and the answers come from knowledgeable sources, experts, or first-hand experience. This mix of information and personal connection is informative and reassuring, like a conversation with a trusted friend.

Finally, when it comes down to caregiving logistics, the Dementia Answers Directory will help you find the professionals and organizations who can help you along the way. Organized into categories of care needs, searchable by location or keyword, it connects you to the resources you’ll need. Like the Internet, the directory’s content will expand over time.

Help and answers are available. You have options for how and where to find it; choose the media that works best for you. The journey is, after all, yours, but not yours alone. There is a community of people with the same worries, joys, challenges, and successes - ready to help you along the way.

Contributor: Karen R. Ogden, Dementia Society of America, team member. Updated 2/1/2023

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