(Editor’s Note: This is the ninth in a series examining and interpreting a commonly used “bill of rights” for dementia patients.)
The Best Friends Dementia Bill of Rights states that people with Alzheimer’s or other dementia deserve to have care partners well trained in dementia care. Yet the vast majority of these individuals are cared for in a private residence by untrained and unpaid family members.
Although these family members have the best intentions, they may not realize they are up against possibly the most complex caregiving situation imaginable. To say the least, it’s emotionally, physically and financially draining.
Yet they attempt to juggle this added responsibility while still maintaining a career, family and social life — all of this without adequate training.
Self-Education and Community Help
The only way to survive is through ongoing self-education to aid in the “on the job training.”
But even when we learn on the job, someone is typically there to guide us. Family members must find educational solutions that work for them, so that means trying different approaches to find the one that works for their unique situation.
Facebook groups are a great way to learn, because other caregivers are sharing their experiences and solutions.
Contact the big dogs — the Alzheimer’s Foundation and the Alzheimer’s Association — and get registered to receive important information about training opportunities they may offer. Each has unique strengths and weaknesses when it comes to training.
Contact local memory-care facilities in your area, too. They often have training classes for professionals and unpaid caregivers. Also, inquire about support groups; when you attend a support group, you get some of the best training possible as you learn from others who are ahead of you in this journey.
Lack of Time? Go Online
For some people, however, attending these classes in person adds yet another level of complexity to an already overwhelming schedule. The classes are usually held during working hours and may not be conveniently located. This makes it difficult for family members to get away to attend.
So the Internet becomes the educator. But sometimes, the caregiver desperately seeks help for his or her current crisis only to find sites to be overwhelming, disjointed, or with answers buried deeply within some long article.
Fortunately, there are some quality sites.
Start by ordering or printing pamphlets and booklets from the National Institute on Aging. Some of the larger booklets can even be delivered to your home for free, literally giving you access to invaluable information at your fingertips.
Facebook groups are a great way to learn, because other caregivers are sharing their experiences and the solutions they have discovered. Asking questions about your unique situation will get you a variety of quality responses.
YouTube is a great way to find valuable videos but it can be hard to find the right one for your specific need. I recommend starting with my group’s channel, the Together in This channel, which has identified and organized many videos to make things easier for you.
Caregivers need information that is easy to locate, understand and implement. They need tactical, how-to information that empowers them to cope with the disease.
As the founder of Together in This, my mission is to streamline the educational process for the family caregiver. I’m accomplishing this by creating tactical pages that organize resources, training workshops with experts and guides that offer streamlined information.
Self-education is vital to caregiver success, but each case of dementia is unique and each caregiving situation vastly different. Caregivers really need personalized training that focuses on their situation. At Together in This, we will continue to work towards bridging this gap so family members can get the training they need to be successful.
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