WE ARE HOMEBOUND…WHAT TO DO?
UPDATE 03.2020 COVID 19
It’s time to experiment!
The challenge is to change, to find new ways to do things. What can each of us do, in our own simple way, to help ‘flatten the curve.’
With some family members at a higher risk the challenge becomes a test. Whether an in-home situation or separated by a senior community, what can we do to keep in touch?
Restricting visits doesn’t mean zero communication. It’s not what we’re use to but together we can make it work.
WHEN SEPARATED BY A COMMUNITY
For some, the first thought is to bring mom home from the community. Let’s take a breath and think about that:
Why was it necessary for mom to enter an assisted living or memory care community in the first place?
Most likely because it was too difficult to care for her at home.
If moved home, will skilled nursing be necessary?
Will there be someone at home to care for her? Give showers, dressing, toileting, feeding, any medical needs…all things to consider before a decision is made.
Will mom be safer at home? With the chance of more people around, is there a higher risk of infection? The higher risk in a senior community is from visitors, staff is easier to control.
HELPFUL HINTS TO… communicate with family members in senior communities.
Keep communications open with the director and immediate staff.
Community management should reach out and communicate their best practice procedures for family members and residents.
Nurses, CNAs, assisted living manager, activity directors. Ask how you can help.
Requests updates, weekly, every other day or daily.
The ability to do this totally depends on the patient’s needs and individual situations
During this difficult time there’s no need to add unnecessary conflict to a difficult situation.
Some family members were helpful to the staff during their regular visits with family. They provided personal updates and observations. Keep this communication open in reverse.
Use emails or phone calls to communicate with loved one AND staff.
Buy stamps and use the US mail. Send ‘thank you’ notes to staff and workers. Let them know you are interested in their family situation too.
Everyone loves to receive mail. Have all family members mail something to mom.
Keep a schedule if necessary so mom has ‘regular’ mail arriving. Have family/especially grandchildren use the mail to send…personal notes, artwork etc. Receiving and sending mail is fun and exciting at any age.
IF THERE ARE RESIDENTS WHO DO NOT HAVE FAMILY TO COMMUNICATE WITH THEM…
Ask if your family can write to them too.
If mom is able to use a computer or cell phone…USE IT. If mom is unable to use a computer or phone, talk with the community, set up dates and times to make a connection.
Work with the staff, listen to their concerns and limitations. Show a level of interest between both staff and family. It helps strengthen the relationship.
Ask how to deliver items. A care package, food, flowers, art made by grandchildren (paintings, notes, projects etc.)
FAMILIES CAN PARTICIPATE IN COMMUNITY ACTIVITIES
Hallway Bingo is big in communities. Residents can play along with the family on their phones. With a phone or Skype play bingo with the family and grandma in her room. Bingo is a fun game for all ages.
Hallway exercise classes are another activity along with sitting chair exercises. Some communities have in-house TV networks. Perfect for room exercises and yoga.
Color together on the phone or computer, if no computer, again, use the mail.
Keep thinking…there has to be more.
Containment works. It helps flatten the curve when we work together.
While this is a heart wrenching time, it’s also necessary and possible to stay positive. This may not be what we WANT, but it’s where we are so experiment, find new ways of doing things. The goal is to flatten the curve.
CARING FOR SENIOR FAMILY MEMBERS AT HOME
There’re numerous websites listing all the safety precautions for a virus free environment at home. See Resources page with more information.
As safety precautions become a daily routine it’s still necessary to avoid feeling distant or alone even at home with others. At some point, being confined has its limits so what else is there to do?
We’re looking to stimulate the mind. Even if ideas don’t work…it was stimulating to think it through!
Families today are spread between cities, states and countries. Now is the time for virtual friends to find interesting ways to connect with each other.
Programs such as Skype, Zoom, Facetime, Facebook and streaming services are perfect answers to isolation. As advertised, they make us feel ‘connected’. Most seniors just never tried it!
Companies like Zoom and Bluejeans offer reasonable ‘meeting times’ or webinars to bring groups together.
Don’t forget the cell phones and their many features, cameras, text, group text can all be fun. Just learning how to use it gets brain neurons pumping.
If mom has trouble, grandkids can help her!
What does everyone enjoy doing?
Is there a singer, anyone dance, play a musical instrument? How about a cooking class? Remember mom’s best pie, holiday yeast rolls or lasagna? How did she make it? Have her tell/show us!
Charades are good, is there a Bob Ross in the family? Create a family art class!
Technology is grand in today’s situations but don’t forget simple everyday things…putting a jigsaw puzzle together, making cookies or playing charades with the family in person.
Not only has technology become the great communication tool of 2020, it brings generations together for a common cause! To flatten the curve!
ANY IDEAS TO SHARE? LET US KNOW, WE’LL ADD THEM.
2019 ALZ RSEARCH UPDATE
Local Support to Global Impact
The Alzheimer’s Association International Conference (AAIC) held in Los Angeles in July 2019, hosted representatives from over 70 countries.
To begin, the Alzheimer’s Association supports and promotes evidence-based quality research, meaningful education tools, care and support for caregivers in addition to Advocacy at state and national levels. Its reach is far and influential.
A wide array of research information was presented at the 2019, conference that included failed drug tests, which is always disappointing to hear. However, failure is also progress. Totally new discoveries were offered and ‘old news’ was given a new twist.
In the last 20 years the public has learned about amyloid plaques and tau tangles. We even learned to spell the words. They do play a major part in Alzheimer’s disease, but how and why?
Several second and third phase clinical trials with plaques and tangles have failed or been stopped, still the question, why. The short answer, there’s something else. This is the challenge that makes a researcher’s head spin.
Over the last 100 years diagnostic technology advanced from the ‘new’ microscopes used by Dr. Alois Alzheimer and Franz Nissl in the early 1900s, to the next ‘new thing’, photography in medical research. For decades, together with the camera lucida and Nissl stain methods, the standard was set for neurobiologists drawing brain structures.
Back to 2019, what’s needed now is accurate research, together with affordable diagnostic tools. The Alzheimer’s Drug Discovery Foundation (ADDF) funded by Bill Gates and Jeff Bezos was founded to develop an easy and affordable diagnostic test for Alzheimer’s disease.
In recent years, identifying an Alzheimer’s biomarker was the buzz word. Expensive PET scans and other follow up procedures were part of the process. We’ve known the appearance of plaques and tangles signals the disease has progressed. Now, the challenge is to find early, affordable diagnostic procedures to identify Alzheimer’s dementia before plaques and tangles appear.
The ‘new’ idea at this conference was to identify Alzheimer’s dementia in its earliest stages. One possibility is neurofilament light (NfL) in the blood. In early tests, NfL in the blood can be measured to detect the progression of different dementias, from early signs to advanced dementia. Said another way, the increase in NfL in the blood reflects neurodegeneration, the breakdown of neurons. The hope is NfL will become the standard measure for diagnostic purposes. There’s more work to do but it’s a step in a promising direction.
NfL is the biomarker to look for in the blood. Like measuring cholesterol or sugar levels. Much more work is necessary (ADDF funding) to be more specific. That’s what research teams do, ‘test’ new theories.
Professor of neurology, Rudolph Tanzi, at Harvard put it simply, “If you want to hit the plaques, you have to do so early on with early detection.”
What next? After the study value of longitudinal data that predicts progression, it becomes necessary to measure white matter and synapse integrity. That’s research jargon. The public needs end results, ‘How does this help?”
This is a very shortened view of extensive work already being done by Stephanie Schultz of Washington University, St. Louis, Mathias Jucker’s group at the German Center for Neurodegenerative Disease in Tubingen, Germany, Philip Weston, University College London, Raquel Sanchez-Valle, Barcelona University Hospital, Silke Kern of the Mayo and the University of Gothenburg, Sweden and Michelle Mielke also of Mayo and others, all working on NfL.
Continued research on NfL to learn what works and what doesn’t is in progress. Something to increase our motivation, to pay attention to and to stay positive.
What else is happening?
One noticeable shift is the researchers themselves. Not only is there more sharing of information (TrialMatch.alz.org), the ‘look’ is changing too. Not to add labels to researchers, but both, those who’ve been working on this for years and the ‘next generation’ of enthusiastic scientists bring their combined brain power together. This is needed to be progressive against this progressive disease.
Other studies covered a variety of subjects: women REALLY are different than men. It appears the cellular body make-up between men and women are different when it comes to dementia.
It could be called a breakthrough, but it’s been around, neuroinflammation. It kills nerve cells throughout the brain and body. The lifestyle we choose contributes to neuroinflammation.
Emphasis on maintaining good blood pressure makes a difference in the heart AND the brain. High blood pressure is responsible for neuroinflammation. It’s been shown keeping the systolic number (top number) in the 120 range is beneficial to brain neurons.
The physical importance of proper sleep each night relates to neuroinflammation in the brain also. There were studies that showed an over dependence on sleep aids can promote neuroinflammation. As a result, the Alzheimer’s Association cannot recommend over-the-counter sleep aids.
Without going into brand names, they can contain diphenhydramine and doxylamine, both found in common over-the-counter sleep products.
What was old is new again.
The brain and body depend on each other. Think of brain neurons as the control center of the body. Like the engine of a car. For the car to perform at its best, the engine needs to be maintained constantly. Professional athletes maintain their brains and bodies. Everyday people need to do the same.
Another ‘new/old’ thing…the food pyramid from the 1960s. It’s back with new twists, like kale and almond milk. It feeds the notion, it’s best to learn healthy lifestyle habits early.
Maria Carrillo, chief science officer at the Alzheimer’s Association said, “That’s where we need to go, a combination approach that may also include lifestyle changes, just like other diseases do.”
Lifestyle suggestions on how we can change our brain health at any age with diet, exercise and more personal socialization will be part of our next update.
For any comments, contact Elaine at: firstname.lastname@example.org
Watch for Part II, Healthy Brain Healthy Body.
ALZ updates: NEUROPLASTICITY AND DEMENTIA
Neuroplasticity is not ‘new’. Knowledge of how neurons are ‘wired to fire’ has been around since the late 1940s. Since the 1970s with new technology, there’ve been amazing observations of the flexibility of neurons to create and strengthen existing neural pathways in the brain.
From the beginning of life neurons grow. With each addition of physical or mental ability, dendrites and synapse are added. An athlete, poet, singer or scientist develops specific muscles and abilities. The more the brain is exercised the better it becomes. To develop or improve any skill it takes time and practice. Remember the story of the tortoise and the hare?
An obvious example of neuroplasticity is blindness. In the absence of sight, neurons fire and rewire to adjust the other senses. After a stroke or an accident, depending on the damage, with regular rehabilitation work, new brain connections are made.
In the last several years there’s been a revival of the 1960s food pyramid and basic exercise routines. Today there’s more emphasis on how diet & exercise. With the addition of social engagement and an increase in cognitive activity, the idea is to challenge the brain.
Anyone remember President Kennedy’s Fitness Challenge of the 1960s? https://www.youtube.com/watch?v=WUnxrCcQQv0
Neuroplasticity’s connection to dementia is the ability of brain neurons to develop new synapse connections. With encouragement, neurons can rewire themselves to try something new. This is possible at any age. Younger cells are more dynamic, adult cells a bit slower…but change can happen.
When we learn something new, change a habit or a belief we challenge ourselves mentally and physically. The chemical make-up of the brain is changed. Who memorized the Gettysburg Address in school? Everyone finds a way to do it, it can be done. The brain can be trained .
That’s where neuroplasticity and dementia connect. It’s not a quick fix and it won’t stop progression, but it builds self-esteem and encourages accomplishments. There’re documented studies that show changes in the structure of the hippocampus when new knowledge is added.
At any age, challenge yourself…start with something you like. It’s easier to stay focused if you like what you do. The arts, creative hobbies, physical exercise even a good card game. Once that’s going, keep an open mind. Dabble in learning a new language, ask questions. There’s no need to be perfect. The ability to play the piano may have changed but the ability to make new synapse connections is still there! Stay social, interact with others. The act of talking comes from the brain. The act of ‘doing’ forms connections.
It’s impossible only if our mind says so. Motivation is a big part of neuroplasticity and memory.
Learn something new each day!
A NEW BOOKING:
Has brought attention to expand education needs for all. The Alzheimer’s Association is prepared to help guide the LGBT community also.
Visit: https://www.alz.org/media/Documents/lgbt-dementia-issues-brief.pdf for ‘Brief Issues’ as a first step. This and other links will be posted on our Resources page under Alzheimer’s Update tab.
What is Alzheimer’s?
Definitions for Alzheimer’s disease (AD) vary from simple to clinical. The Alzheimer’s Association says:
Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.
Why is it called Alzheimer’s?
The disease is named for Dr. Aloysius Alzheimer, or Alois for short. He was a neurologist practicing in Germany beginning in the 1890s. In 1901 he observed severe senile dementia behavior from a 51, year old female patient. Since the observations of her case, the terms plaques and tangles have been part of AD research for over 100 years.
Today, advances in MRI and PET scan imaging technology enables a more accurate diagnosis of specific dementias. This is important, so the most beneficial treatment can be planned.
Treatment for Alzheimer’s disease is different than treatment for Parkinson’s. Both produce memory issues but for different reasons. With a more effective diagnosis’s a more effective treatment can begin. The two diseases don’t necessarily use the same medications.
Presently, FDA approved drugs most commonly prescribed for early stage Alzheimer’s are Aricept, Exelon and Razadyne, all cholinesterase inhibitors and Namenda, a memantine.
Their scientific make up is too involved to describe here. Simply said, they slow down the progression of memory loss and confusion in the early stages of AD. They are not a cure.
When administered after an AD diagnosis, in the early stages of the disease, symptoms can be slowed. Why is this important? As the progression of AD is reduced, it allows the patient and family time.
Time to accomplish several things. Depending on age, to continue to work. To build new relationships with family, support groups and doctors. To review financial and legal concerns and to participate in research trials. Also, to become an advocate for AD research and care partner education.
This site and blog will present current information, encourage others to share ideas ‘that work’, help address problems and provide the latest updates in a simple and relatable language.