MY Mission
This is WHY I Blog
I see families coming to visit and they want to interact with their loved one but, he or she might be having trouble finding words or something to talk about, and things become awkward and uncomfortable. I watch grandchildren fidget with their phones because they just don’t know what to say or how to connect. Then I see how everything is so much easier and upbeat when an activity is shared together. Suddenly, there is something to talk about or reminisce about or laugh about. It is my hope that this blog will offer meaningful activities and information to help you and your loved one cope with their cognitive challenges and find joy (often unexpected!) in this difficult journey. And if you work in Recreation , I hope that I can save you time and show you some fun, creative and new things to do with your participants!
What is Alzheimer’s Disease? What is Dementia?
Alzheimer’s is a progressive , degenerative brain disease characterized by loss of memory and ability to communicate verbally, behavioral changes and eventually, an inability to function independently. It was first identified in 1906 by Dr. Alois Alzheimer, a German psychiatrist and neuropathologist.
People often ask me the difference between Alzheimer’s and dementia. According to the Alzheimer’s Association, dementia
is “a general term for loss of memory and other mental abilities enough to interfere with daily life”. Alzheimer’s is a type of dementia – the most common one. In other words, Alzheimer’s is a disease that is under the category of dementia, and 60 to 80% of people with dementia have the form called Alzheimer’s. Examples of other forms of dementia include memory loss from a stroke, brain tumor or fluid on the brain, memory loss caused by diseases like Parkinson’s and Huntington’s, dementia from alcohol abuse, as well as Lewy Body Dementia.
WHAT YOU CAN DO TO PREVENT ALZHEIMER’S?
This is an important TED TALK by Lisa Genova. She wrote the novel Still Alice which became a movie in 2015. (Julianne Moore won the Oscar for Best Actress.) Did you know, though, that Genova is a neuroscientist ?! Check out her advise on what you can do right now to keep your brain in tact and avoid getting Alzheimer’s.
POWER FOODS FOR THE BRAIN
“Genes are not destiny,” says Neal Barnard, M.D. , F.A.C.C. (author ,researcher, and founder of the Physicians for Committee for Responsible Medicine) Bernard gives information based on a group of studies called the Chicago Health and Aging Project which strongly support the idea that a diet low in saturated fat lowers chances of developing cognitive decline. The bad news: Cheese is the #1 source of saturated fat and meat is 2nd in line.) The good news: There are things you can do to prevent Alzheimer’s and other dementias!
LEARN NEW THINGS
It sounds simple but according to Lisa Genova, learning is the number one way to maintain a healthy brain! Learn a new language, read a good book, take on a new hobby, listen to a podcast, brush up on your computer skills, travel to a new place, find out about your ancestry. Use your brain, satisfy you curiosities, find your passions. It’s never too late!
BUILD STRONG SOCIAL TIES
Get out and get involved. A study published in the Journal of Biomedical Sciences that focussed on the correlation of loneliness and the instance of Alzheimer’s Disease showed that those people who were lonely or socially isolated were more likely to get AD that those that weren’t.
SO, volunteer or join a group of like-minded people in your community. If you don’t have a large number of friends, find ways to connect with people you don’t really know- even if it’s talking to someone in line at the store about the weather!
ADOPT A MEDITERRANEAN TYPE DIET
EXERCISE REGULARLY
As Neil Barnard, M.D., FACC states in the video, exercise at least three times a week for 40 minutes. We all know that exercise makes us healthier in so many ways. Find a buddy to walk with, ride bikes with or meet at the gym. Do whatever it takes to add this to your weekly routine.
GET ENOUGH SLEEP
There is evidence that supports a link between sleep deprivation and cognitive decline/ Alzheimer’s Disease. One of the studies from Washington School of Medicine in St. Louis found that the brain is unable to clear out all of the amyloid beta protein that builds up when a person has a sleepless night. (Amyloid beta protein is a major component of the Amyloid plaque present in the brain of someone with Alzheimer’s.) There is still more research to be done.
Regardless, people who don’t sleep well often have increased depression which can lead to Alzheimer’s.
CLINICAL TRIAL!
The Alzheimer’s Association is funding a two year clinical trial– U.S. POINTER- that is a U.S. study to “Protect Brain Health Through Lifestyle Intervention to Reduce Risk.” It will examine the effects of Lifestyle Interventions in adults 60 to 79 who are at risk for cognitive decline in preventing Alzheimer’s.
COMMUNICATING WITH SOMEONE WHO HAS DEMENTIA:
FIVE Tips For FOR CAREGIVERS
NO ARGUING (NO EXCEPTIONS) “If you don’t agree, let it be!”
EXAMPLE: Dad says “I haven’t had anything to eat all day” (But he just had a meal.)
DO NOT SAY: ” Dad, you just ate lunch!” – He doesn’t remember eating and his brain is not giving his body a signal that he is full.
TRY THIS INSTEAD: Repeat what he just said. “Wow, you haven’t had anything to eat!” – Just being heard may be enough.
OR TRY THIS: “You must be starving; let me get you a snack.”
IF THAT’S NOT POSSIBLE: Be on his side. “That’s just not right; I’ll talk to the guy who runs the kitchen!” If Dad knows you are taking care of the problem, he becomes calmer, and it’s much easier to distract him with an activity or object.
DON’T SAY the WORDS, “CALM DOWN“. If you feel the need to say this, it is probably too late. The situation has already escalated and now you have to DE-ESCALATE.
EXAMPLE: Mom says “I want to go home and you can’t keep me here!”
DO NOT SAY: “Calm Down” and if a crowd forms around her, ask them to go.
SAY THIS INSTEAD: “You want to go home! Mom, this is difficult but we are going to figure it out. I want you to be happy.” Then CHANGE THE SUBJECT OR SCENERY if you can and take her to a different room and find something to look at or do.
IF THAT DOESN’T WORK: Play the “good cop”! “They have to get the paperwork ready and are taking forever.” OR “We are waiting for that darn bus driver to get back.” Yes, you will become an expert at fibbing to comfort but calming Mom down is key. . (Read my article, Is It OK to Lie to Someone With Alzheimer’s) Distraction is the goal once agitation starts to subside. Always aim to let Mom know that you are on her side and realize that this disease is scary.
DON’T SCOLD or RAISE YOUR VOICE– This can be a tough one because caregiving is so exhausting and your patience inevitably wears thin, but it is in your best interest to try.
EXAMPLE: Dad just called the aide a fat bitch and you are horrified.
DON’T SAY: “Dad, that’s not nice! Tell her you are sorry!” Dad no longer has filters and he may not remember a minute later that he even said it. Scolding and/ or raising your voice doesn’t work and makes him feel like a child. Dad really can’t help it. Racial slurs, cursing and name calling are not unusual behaviors with this disease unfortunately.
TRY THIS INSTEAD: “Look at this photo album I brought, Dad!” (Always bring your bag of tricks/props!) DISTRACT, DISTRACT, DISTRACT! (Then mouth to the aide that you are sorry although she is used to it, don’t worry
. In a public place, it can be helpful to hand out a card that explains that “MY DAD HAS ALZHEIMER’S , PLEASE EXCUSE HIM IF HE ACTS or SAYS SOMETHING INAPPROPRIATE.
THE PERSON WITH DEMENTIA IS ALWAYS RIGHT ( even when he or she isn’t!) This goes back to Tip 1 (NO ARGUING OR CORRECTING)
EXAMPLE: If your husband with Alzheimer’s thinks you are his mother instead of his wife, you are! Just give him a hug and let him know you love him. Live in his world and play along. (It just doesn’t work to try to reorient him into the present reality when he is somewhere else in his mind. Always ask yourself, “How can I make this difficult journey more pleasant and less frightening?”
EXAMPLE: If Mom thinks that someone broke into her room and took her things, they did.
DO NOT SAY: “Oh, no one is taking your things; don’t be silly!” In her mind, this really happened and your denying it will infuriate her.
SAY THIS INSTEAD: “That’s too bad, I’ll help you find them.”
OR SAY THIS: “There are cameras in the halls. I will report this and we’ll get to the bottom of this!” Having dementia is overwhelming and you are offering a solution in her mind – even if it’s not a real one!
REPEATING SOMETHING OVER AND OVER IS A CUE THAT THE PERSON WITH DEMENTIA / AD NEEDS A TASK OR ACTIVITY.
This is one of the most frequent complaints and, quite frankly, it can be maddening. Here are some strategies:
EXAMPLE: Dad asks: “Is it going to rain today?” (…..and then asks the same question again and again.)
DO NOT SAY: ” I just told you ten times! It’s NOT going to rain!”
INSTEAD: Remind yourself that he can’t help it and this behavior is probably due to fear or insecurity. He really doesn’t remember asking or your answering him. TONE OF VOICE IS EXTREMELY IMPORTANT. He needs comfort and reassurance. If he can still read, write down your response on a piece of paper and hand it to him or keep a white board handy. (It can help you to stay calm if you don’t answer verbally.) Come up with a task or find an activity that he really likes to do. Change the scenery….go for a walk. Have favorite snacks on hand or favorite activities/videos available to try to distract.
IF HE PERSISTS AND YOU JUST CAN’T KEEP IT TOGETHER: Take a break in another room, even if it’s a brief one. If possible, call someone to come and give you relief. If he or she can’t give you physical relief, at least express what you are going through. This isn’t easy and you can’t always do it alone.
