To some people, the phrase “knowledge is power” means learning the facts and talking to experts. Other people may feel the phrase describes mindfulness and self-determination.
For the individuals and families for whom dementia has entered their life, both interpretations are important. Learning about such things as the different types of dementia, ways to slow progression and to overcome challenges, as well as navigating the spectrum of legal issues and quality-of-life wishes creates a sense of empowerment. This approach enables good decision-making as well as makes it easier to converse with physicians and other healthcare professionals.
Internet research is a good place to start. Be sure to use keywords that give you a manageable number of hits. For example, the word “dementia” alone reveals 4.9 million results. Using a string of words such as “Lewy body, behavior, and medication” will improve the usefulness of your internet fact-finding efforts.
Determining the reliability of internet information is another issue. Government resources, such as the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/disorders/dementias/dementia.htm) are the location of the high-quality patient and family-centered information. University medical centers, such as the University of California, San Francisco, Memory, and Aging Center are another source of dependable information. (http://memory.ucsf.edu/) Medline Plus, (National Library of Medicine) can direct you to add high-quality sites. (https://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html)
Internet searches, though certainly an important aspect of your fact-gathering journey, cannot replace conversation. So, be sure to include a telephone in your arsenal of fact-finding tools. The local Agency on Aging, the Dementia Society of America, as well as nearby hospitals, university medical schools, and Veterans Health Administration hospitals, are examples of organizations where you will find experts. Use their webpage to find the contact information of the people best able to help you.
Mindfulness and self-determination is another way to interpret “knowledge is power.” Here, rather than facts, the emphasis is on self-reflection. Self-reflection can be something as simple as setting aside a few quiet and quieting moments each day for contemplation.
Acknowledge feelings such as anger, sadness, abandonment, and fear. Use your feelings both as an entryway to mindfulness as well as an incentive to discovering solutions to the challenges you face. Consider having a psychologist or a medical social worker guide you through this difficult period.
Keeping a hand-written or word-processed diary is another tool. At the end of the day, perhaps just before going to bed, set aside a few moments to write. Don’t worry about grammar, spelling, or creating the perfect sentence. Just write. Pour your heart out. Document the events that made your day especially good or unbelievably horrible.
Be sure to review your diary writings from time to time. Doing so will help you see past mistakes, appreciate progress, or give important insight into the best next steps.
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.
The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of the content contained within blog posts- that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice, please consult your doctor. www.DementiaSociety.org