One of the frustrations about Alzheimer’s disease and related dementias is that there’s no cure, yet. This means that residents of Dubuque and elsewhere dealing with dementia in or out of hospice care are eager to learn anything about current research including new theories. Unfortunately this can sometimes lead to a range of rumors, exaggerations, unverified health claims, and false, even dangerous info.
The team at Above and Beyond Home Health Care and Hospice often has the same challenges as our clients and their families at trying to sift through all the info to determine what is more or less accurate. This also includes trying to learn where to go to learn more.
We all are looking forward to reading a story in the future about “Alzheimer’s disease cure found” backed by legitimate science and clinical research.
It hasn’t happened yet but it does seem to be getting closer as more research looks into the process of how the brain affects and alters the proteins. We also read profiles about people of similar age and health and wonder why some of them are more likely to get Alzheimer’s disease than others.
Many of the initial questions haven’t been answered about whether the disease has environmental causes or genetic causes or some combination of both. Or when the symptoms really may start to show up in small amounts even if it takes years for people to notice.
Some areas to go to get useful information include:
- Your newspaper or favorite TV news program or channel may occasionally share “exciting advances in Alzheimer’s disease” and give quick basic summaries. This information can be useful for those eager to hear what’s new and any local events but there are some challenges. Often these stories may be simplified to fit a short format, like a 2-minute newscast, so vital facts may be cut out. In some cases, a general reporter may not have the background to go into a lot of depth. So their details may not be complete or not be quite accurate.
- Medical programs. These TV programs about certain health topics sometimes provide more of an in-depth look at a particular topic such as dementia and can bring in a variety of experts to discuss common issues. However, these sometimes are sponsored by a particular medical product or a health foundation so they may not necessarily be neutral or objective in their reporting. Some health programs, especially on cable channels, may also be edited to focus more on the sensational, extreme or heartbreaking, while your experience may not be as dire.
- Alzheimer’s organizations. National organizations are considered especially reliable and comprehensive in their available information. For instance, the Alzheimer’s Association has been sharing details about the health condition since 1980. It has become an invaluable resource for people with Alzheimer’s or dementia as well as their friends and family. Whether someone may be beginning to show symptoms or their condition has advanced, there’s plenty of info.
The association also includes all sorts of information about ongoing research and works to raise money for all sorts of studies to continue into different aspects of the disease.
Visitors can learn about how to get involved and how to help, whether it’s volunteering or giving money. There is also information about trials that people could be part of.
Another part of the site’s mission is to alert visitors to resources in every state and larger communities, including support groups, chapter activities and other ways to help at a local level.
For instance, there are eight chapters in Iowa but services are available in all 99 counties. Some chapters collaborate on programming for statewide events or take part in national events.
Other organizations with similar missions of education, advocacy and fund-raising include Alzheimers.net and the National Council of Certified Dementia Practitioners.
- Local medical programs. A local medical center or clinic may provide information on who best in the area can assist with Alzheimer’s patients and their families. This can include referrals to aging and dementia specialists, home healthcare agencies or insurance questions. A local medical center or group also may be able to connect someone to various aging-related organizations.
- National medical organizations. Because Alzheimer’s is becoming so common, more effort is taking place into studying it at all levels, including at several respected medical research facilities such as the Mayo Clinic, Yale, and the John Hopkins School of Medicine.
- Local memory care centers. Facilities, where people with Alzheimer’s are currently living, may be excellent resources, whether you have someone who could live here or may need their services in the future. If you make an appointment, as opposed to dropping in, the staff would be happy to show you around, tell you some of the environment some challenges, and talk to you about local Alzheimer’s resources.
More than 5.2 million Americans now have Alzheimer’s so there’s a great deal of need for people to learn as much as they can. This month is also a good opportunity to learn more: Feb.14-21 is Alzheimer’s Disease and Dementia Care Staff Education Week, which is an opportunity for people already working in the medical field to learn more.