There is so much mystery and myth that surrounds Alzheimer’s and related dementia. Most people interchange the two terms without knowing the difference or believe that a person starts out with dementia but then it moves into Alzheimer’s, where a person may become “violent”. So what exactly is the difference between Alzheimer’s disease and dementia and why are we hearing more about it? Dementia is an “umbrella” term that means two or more areas of the brain are declining from what they once were. Alzheimer’s disease is the most common cause of dementia, responsible for about 80% of all dementias; however, there are hundreds of causes of dementia, making it difficult to diagnose in a fifteen-minute doctor appointment. Imagine going to your doctor with a high fever, pain in your abdomen, and nausea…wouldn't you want to know what’s causing it? Appendicitis versus food poisoning is treated very differently. Alzheimer’s is the 6th leading cause of death in the U.S. Although there is no cure or drug on the market to slow the progression of various dementias, ultimately understanding the disease, planning ahead, and learning how to communicate allows family, friends, and the community to offer the best support and understanding.
Up until a few decades ago, we thought confusion and memory loss was a normal part of getting older. We now know that the brain can get diseased, just as the heart or kidneys can. Unfortunately, we as a society are way behind in reducing the stigma associated with these brain diseases and science is behind in finding medical treatments. Fortunately, there is a lot of change underway, and the State of Wisconsin is helping to lead the way. Dementia friendly communities is an initiative to engage the local businesses, faith community, and other organizations to help people with dementia and their care partners access the places and activities they are used to, live well with dementia, and to increase sensitivity and remove the stigma. A half hour training is provided on site and at a time most convenient to the organization which helps them recognize customers who may have dementia, its impact and why should we care, and asking if the environment is dementia friendly. Already, over 700 people in Barron, Rusk & Washburn Counties have received this training. People are realizing the importance of a diagnosis and planning ahead, while at the same time understanding that these brain diseases are much more than just memory loss. So why is this important and why should communities care about dementia?
First, perhaps selfishly so, is that anyone with a brain is at risk for the most common form of dementia, Alzheimer’s. Science still does not know what causes the plaques and tangles often associated with it. They do know that the number one risk factor is simply age. Every decade you live, it increases your risk of getting Alzheimer’s. So if you don’t know someone with Alzheimer’s disease now, you will shortly, due to the large baby boom population that is going to live longer than we’ve ever seen. Science has done a lot to reduce rates of death caused by cancer, stroke, and heart disease, but the only one that increased is Alzheimer’s. The northern counties of Wisconsin will have an especially high population of people over the age 65 in the next twenty years, as young people leave for jobs and many people come to retire here. Our communities are also very rural, which can be challenging to access resources. So what will it mean if you or your loved ones or friends get dementia?
Well, it certainly doesn’t mean that core needs, such as feeling useful, running errands, giving and receiving love, etc. will go away. On the contrary, it will still be just as meaningful to go to a restaurant with friends to eat and laugh together. It may become more difficult to pick something off the menu or I may repeat a story, but the experience is still meaningful, and that’s where friends, family, and the community can offer a little bit of extra help, patience, and understanding to people with dementia. At the same time, it is important to advocate for more funding for research. There is a direct relationship between funding research and discovering treatments and cures. The University of Wisconsin in Madison is home to the Wisconsin Registry for Alzheimer’s Prevention (WRAP). So what exactly is WRAP? It’s the world’s largest longitudinal research study on adults whose parents were diagnosed with Alzheimer’s disease. Its goals are to identify Alzheimer’s disease before the symptoms start and to discover what lifestyle factors that reduce the risk or the symptoms. So far, they are finding that exercise, heart health, diet, sleep, and mood are big factors in whether someone develops Alzheimer’s disease.
So how can you best help someone with dementia communicate?
- Be patient and supportive
- Show your interest
- Offer comfort and reassurance
- Give the person time
- Avoid criticizing or correcting
- Avoid arguing
- Offer a guess
- Encourage unspoken communication
- Limit distractions
- Focus on feelings, not facts
How can you best communicate?
- Identify yourself
- Call the person by name
- Speak slowly and clearly
- Give one-step directions
- Ask one question at a time
- Patiently wait for a response
- Repeat information or questions
- Use short simple words and sentences
- Turn questions into answers/statements
- Avoid confusing expressions
- Avoid vague statements
- Emphasize key words
- Turn negatives into positives
- Give visuals cues
- Avoid quizzing
- Give simple explanations
- Write things down
- Treat the person with dignity and respect
The Aging & Disability Resource Center of Barron, Rusk, & Washburn Counties have locations in Spooner, Barron, and Ladysmith. Our office provides memory screening, dementia education, connections to resources and information, and training for businesses and other organizations to become dementia friendly. If you would like any of these services, concerned about a loved one or friend, or would just like to get involved in the dementia friendly effort in your community, please contact Trisha Witham at 1-888-538-3031 or firstname.lastname@example.org.