When you or a loved one is diagnosed with a disease or injury which affects memory and personality, there can be a feeling of overwhelming information. Doctors, nurses, specialists, and of course friends and loved ones all have opinions and facts for you. Other times it can feel as if no one has any answers for you, and that can be equally overwhelming. The search for answers usually starts with the doctor, but there is a wealth of information available in the public sphere. From common questions about what to expect down the line to specific questions about specific factors, the internet is a great resource to begin your search.
Whether you are looking for information on Alzheimer’s disease, dementia, or some other form of memory loss issue, there are resources out there you can turn to which offer advice, help, and often answers. We can’t promise you’ll find every answer you seek out there, but we can offer a place to start your search.
Alzheimer’s Disease Resources
What is Alzheimer’s disease? It was named for the scientist Dr. Alois Alzheimer who first spoke to the scientific community about the physical signs and symptoms of this memory-eating disease. The physical signs he spoke of were amyaloid plaques and neurofibrillary tangles which built up in the brain of someone suffering from the disease. Because this buildup affects different areas of the brain, each person experiences a slightly different progression of the disease. However, there are many commonalities which can be used to help diagnose stages of the disease.
To learn more about Alzheimer’s Disease, current research, and advancements in treatments, Alz.org is a valuable resource. Their information is sourced from the scientific, academic, and medical communities to bring you understanding and support. They also have thriving message-board communities for those searching for answers or support. They also offer in-person support groups.
For current information on scientific research and treatments, don’t discount the government! The Department of Health & Human Resources offers many resources, such as the National Institute on Health, and the National Institute on Aging. Their area specifically on Alzheimer’s disease has good information, and links to even more information for those who are still searching.
What is dementia? Once thought to be an unavoidable part of aging, today, dementia is hard to pin down to just the one term. “Dementia” covers many types of diseases which affect memory and personality, such as Parkinson’s disease, Dementia with Lewy Bodies, and Vascular Dementia. Reversible Dementia can often be caused by medication side effects, alcohol and/or drug abuse, as well as developing naturally in some older adults.
The ADEAR (Alzheimer’s Disease Education and Referral) Center has been open since 1990, compiling Alzheimer’s and other dementia information and resources. You can contact them for free printed publications, information, and to learn about clinical trials. Call them toll-free at 1-800-438-4380 (8:30 a.m. to 5:00 p.m. Eastern Time, Monday – Friday) or send an e-mail to: firstname.lastname@example.org.
The National Institute on Aging has a section specifically about the many types of dementia. This page leads you to the many articles on offer about the different types of dementia and how they’re being researched and treated today.
Eldercare Locator – The Eldercare Locator helps older adults and their caregivers find local services including health insurance counseling, free and low-cost legal services, and contact information for Area Agencies on Aging (AAAs).
Trauma, Injury, or Other Memory Issue
There are many ways to acquire a memory loss issue – Post-Traumatic Stress Disorder, traumatic event amnesia, trauma to the head, medication side effects, stroke, and the list goes on. Whatever your specific issue, there are still places out there to help offer support, advice, and even sometimes answers.
This handbook, written by several professionals at the University of Washington’s Memory and Brain Wellness Center, offers some helpful tips for those with memory loss. It was written through collaboration with patients undergoing memory loss treatments.
This booklet offers some information about memory loss and the different types of cognitive impairment that can cause memory loss. While not exhaustive, it’s a good starting point and offers solid information.
Resources for Caregivers
Caregiving is a major part of the cost of Alzheimer’s disease- not only monetary cost, but the physical and emotional toll that caregiving can take on families, friends, and loved ones. There are over 6 million people with Alzheimer’s disease in America, and over 16 million Americans provide unpaid care for those with the disease. That’s not to mention the paid care! It’s not an easy diagnosis to live with, either as a patient or as a loved one watching. For those who spend time caring for someone with cognitive issues, remember to take time for yourself, regularly. Your health is as important as theirs, and you’ll need to put on your own oxygen mask before you can help someone else, to borrow from the airline industry.
Alz.org has a lot of information about all the different stages of caregiving for the stages of Alzheimer’s, from early to late stage, and for everything in between. They offer support groups online and in real life: all you have to do is find one near you. They also offer the Alzheimer’s Walk, to raise money for research and treatment. Check out their site for info on a walk near you.
The National Institute on Aging also offers information about caregiving through cognitive issues, Alzheimer’s disease and more.
For those who are looking to move to the next level of care, such as moving to a memory care facility, Landmark Memory Care offers advice and information about moving to and living in a facility. Check out our Activities of Daily Living worksheet and Cost Comparisons sheet to get an idea of the requirements and costs of living in a facility. You can also check out our upcoming events to see what great activities we have lined up for the month.