This was a very interesting post on one of my Linkedin groups
made by Jackie Pool from over int he UK.
I have gotten permission to repost.
Please let us know your thoughts!
Can Cognitive Rehabilitation lead to ‘Rementia’?
I am privileged to be involved with a large Cognitive Rehabilitation study which is funded by the National Institute for Health Research (NIHR) to determine if early intervention offers the possibility of helping people with early-stage dementia and their carers to manage the impact of Alzheimer’s disease on their everyday life and reduce or delay the progression of disability.
My role as an Occupational Therapist is to train and supervise the OTs who will be delivering the Cognitive Rehabilitation approaches at 6 sites across the UK over 3 years. Participants in the study will be choosing meaningful goals that they wish to achieve.
I am hoping that the outcomes will provide us with evidence that it is possible to work with people with dementia and the ‘plasticity’ of the brain to educate new brain cell pathways to replace damaged ones. I have certainly seen many instances where people I have worked with have improved in both cognition and function and some years ago, Tom Kitwood (of whose work many of you will know) and I discussed this in the context of ‘rementia’
Of course we cannot second guess the outcomes of our study but I wonder if anyone has got any anecdotal evidence of how focused therapeutic interventions have helped individuals to improve – or to maintain their skills for longer than might have been expected?
Can we in our LinkedIn Dementia Champions group raise the profile of what is possible and share this message?
We will be live 11am EST, 10am CST, 8am PST, 4pm London
All episodes are recorded and archived
Avoiding Scams – Be Wise, Informed and Empowered
Monday we will have Gary Jonson from the Minnesota Better Business Association join us to discuss how to avoid scams and what to do if you one into an unethical company. Come and join us and get your questions answered. Find out how to best protect your loved one and yourself!
This url has some great information on charitable giving does and don’ts.
Our second guest today will be Author Nancy Smiler Levinson who wrote “Moments of Dawn: A Poetic Memoir of Love and Family, affliction and Affirmation.” We will have a wonderful discussion on how Nancy, as spouse dealt with the disease and cared for her husband. We would love to hear how you are dealing with this situation as well!
To contact Nancy you can email her at:
Bookwag79@gmail.com
To Purchase the book “Moments of Dawn” you can go here:
Our radio interview today we will discuss what was shared about the Alzheimer’s Disease International Conference.
Click on the graphic above to listen to the radio show!
We spoke to Marc Wortmann the Executive Director of ADI which is located in London. Our focus was on the conference, what they hope to achieve, who was involved and why it matters to have these meeting of the minds. We were regrettably unable to coordinate having Dr. Jacob Roy from India and Daisy Acosta from the Dominican Republic.or email ADI at: info@alz.co.uk
Our Second Guest is sociologist Cathy Greenblat who has traveled the world studying the treatments offered to people with dementia. Shea has been touched personally by this disease through her mother and two of grandparents. Cathy wanted to understand more about the condition and help provide a conduit for change.
Cathy is the author of the book “Love, Loss and Laughter,” where she tells stories of positive aging and live with dementia. The photography is powerful and beautiful and will most likely change the way you view aging and illness.
Cathy can be reached via her website by clicking on the below graphic
We had a great conversation today with Harry Urban and Michael Ellenbogen on Dementia Chats. We continued our conversation from last session where we discussed communication and relationship. A few of the topics we covered were:
Best practices for communication
How to test someone with dementia using questions
Eating habits and hunger or lack of
Changes in body temperature
All were very interesting and as usual I learned a lot, which makes me laugh because after 30 years of dealing with my own Mother and her symptoms you would think I have this figured out…. but it just doesn’t work that way. I don’t think any of us should ever stop learning and listening to those with dementia.
The show goes live at 11am EST, 10am CST, 8am PST and 4pm London
All shows are Archived for your review at your convenience.
Dementia – Planning for Gratitude,
Plus New Approaches to Memory Loss
on Alzheimer’s Speaks Radio
Today our guest will be Linda McLean, an internationally respected business and life coach, and the author of the #1 International bestselling book, Next Level Living® – Today’s Guide for Tomorrow’s Abundant Life and My Gratitude Journal.
She will share with the how to live a life of gratitude, even through illness and how to develop a plan to do so and be successful.
Linda can be reached via her website at:
Our second guests are “Dementia Therapy Specialists” Dr. Daniel Nightingale and Kathleen Nightingale.
Dr Dan is a leading UK Clinical Dementia Specialist now based in the US. He is an author, speaker, and a world leader in the use of hypnosis for people living with dementia. Dr. Dan is founder and CEO of Dementia Doctor (UK), co-founder and CEO of Dementia Therapy Specialists (US) and Editor in Chief of the journal titled Dementia Therapy Care.
Kathleen Nighingale, CCH is a certified clinical hypnotherapist and Dementia Therapy Specialist. Her expertise includes Medical Imagery, Fears and Phobias, Stress, Weight and Pain Management. Kathleen is clinically certified by the American Council of Hypnotist Examiners, and is board certified by the American Board of Hypnotherapy. She is also an award-winning wellness author.
Dr. Dan and Kathy can be reached via their website
Having the continuous dreams and nightmares seem to haunt me every night and sometimes even at midday when I take my nap… which made me write this account of one such dream.
“Macabre of Night”
Oh silence of night why doth thee abide me no grace,
Whence tranquility of sleep doth withdraw to a grave,
Then in the once hallowed peace of slumbers depth,
Shrouded within the labyrinth of a distraught mind,
Macabre doth lurk, in the midst of its fiendish taint,
Now I dream in apprehension of the blood stained knife,
With gruesome apparitions… distorting the night,
Tremble as a mocking hangman’s noose stretches taut,
Then running, screaming, fleeing the devilish fiend,
Thence plummeting down, towards the sod of earth,
Ferociousness of limbs now in a frenzied affray,
Lash out at the air, or anything, with eyelids closed tight,
Whence bed doth move, thence nightlight would take wing,
The furniture therein becomes my sleepwalker’s maze,
As I fight of a foe… not within my dwellings grasp,
I stumble and grope… shriek, wherein doth I dwell,
As ligaments do ach and a drowsy numbness pains,
When soft arms embrace me, honey, reawaken thy soul,
Return to the living; consume spiritual waters of peace,
For ‘twas the water of Lethean, thee hath drained…
Today was another very special day Mother’s Day with mom. Although in her end stages and limited in the way she can communicate any more the strength of relationship does not give into illness. Between myself, my daughter Danielle and my Mother we were all able to connect, share some giggles and precious moments that dementia will never be able to take from us.
Kisses
Here are a few short videos, not from today but a couple weeks ago where a friend of mine is talking and singing with my mom. Janelle, my friend is doing some validation training and is working with my mom during this process. I was able to sit on on this session, casual but connective and record a few of her interactions with mom.
The funny thing was every time I shared these with various friends, the comments were the same. “I didn’t think she was able to connect like this anymore.” You see most of the time she can’t, but there are those times, especially when music is used, mom perks up. It may not last long, but the connections are very evident and oh so precious to me and I believe others that see the videos as well.
What Are Your Thoughts?
For More Information on Validation Training Click on Naomi’s Photo
It came in glimpses at first… a forgotten birthday, a momentary confusion of names and faces. Then came the swapping of nights for days followed by anxiety, wandering, and slipping through time. Eventually “bad days” became more frequent than “good days” and my husband’s paternal grandparents could no longer maintain their self-sufficient lifestyle. More than losing their home and their independence, they lost themselves piece-by-piece as our family looked on, aching to stop the process. Leigh Ivey, Sr. passed away in April of 2012 battling the effects of Alzheimer’s; after sixty years of marriage, Dorothy has been left to carry on without him, still suffering from Alzheimer’s. The truth is, all who love her suffer. It is absolutely heartbreaking to lose a loved one piece-by-piece right before your very eyes.
In September of 2012, I participated in The Walk to End Alzheimer’s (team name: “Forget You, Alzheimer’s”—clever, right?). With the help of an incredible group of friends and family, I raised $535 in under six weeks! My husband and I were at the front of the walk, which wound through Portsmouth, New Hampshire. At the bottom of a hill, I looked up to glimpse a sea of purple and the sun shining brightly. In that instant, I knew there was more I could do. Months later, after seeing the documentary entitled “Blood Equity” about football players suffering long-term effects from the incredible hits they take during their short time playing football. Something clicked. The connection between football and Alzheimer’s suddenly seemed so obvious and so beautiful— 1. Our family, Grammy and Grampy included, loves football and spends every Sunday from late summer to early winter watching football. How wonderful it would be to see the NFL raise awareness and money for Alzheimer’s! 2. A study from Reuter’s found that death rates from Alzheimer’s and Lou Gehrig’s Disease were four times higher in former NFL players than those in the general United States population.
My mission became clear: get the NFL to “Go Purple” in the month of September—Alzheimer’s Awareness Month—to raise awareness and money in the fight against Alzheimer’s Disease. This act of support is beneficial in many ways: 1. It will help raise awareness about a disease that is often left out of the national conversation with regard to healthcare. 2. Raised awareness means increased efforts in fundraising and research. 3. Current players can rest assured knowing that their employers care not only about their performance on the field for the short time they play but also about their health and wellbeing long after they’ve retired from the game. 4. Former players and their families may no longer feel discarded by the NFL as they face issues of memory loss and confusion. It is the social and moral responsibility of the NFL to get active in the fight to end Alzheimer’s.
Since the year 2000, deaths from Alzheimer’s have risen 68% while deaths from other major diseases have decreased; this is no coincidence! Last year, the National Institute of Health spent 5.8 billion dollars on cancer and 4.3 billion dollars on heart disease. Comparatively, the NIH spent just under 500 million dollars on Alzheimer’s. As fellow Alzheimer’s activist, John Sandblom, has indicated: “In 2011 there were 50,000 new cases of HIV/AIDS and that disease received 2.6 Billion in research funding from the NIH and there were 500,000 new cases of Alzheimer’s (10 times as many) […] Now no one begrudges the research on HIV/AIDS, quite the contrary, it has proven that if you pour a lot into research you can fairly quickly change what was once a rather quick death sentence into meaningful treatments that allow a long life.” In order to get serious about making progress in the fight against Alzheimer’s we need awareness, education, and more funding! The time to act is now!
I began the initiative to turn the NFL purple in September by contacting teams and sponsors. Many thought I had a great idea. None committed to action. I created a Facebook page (https://www.facebook.com/NFLgoPURPLEinSEPTEMBER) and I started a petition on change.org (https://www.change.org/petitions/national-football-league-go-purple-in-the-month-of-september-for-alzheimer-s-awareness) in hopes of garnering support by the masses. Since starting the petition in March 2013, I have seen it grow, stall, then grow further. I am anxious to see numbers increase, and I’m confident that they will as I continue to make connections and gain supporters. I understand that I have a lot of work to do in order to get the attention of the NFL, and I am working diligently to spread the message of my mission. As this movement has gained traction, I’ve been thrilled with the outreach from the Alzheimer’s community. Seeing activists working collaboratively has shown me, once again, the beauty of humanity… like a flower growing through cracks in the pavement; where tragedy lies, beauty grows. It’s simply amazing.
I fight for Leigh Ivey, Sr. and Dorothy Ivey. I fight for the NFL players who bring so much joy to the life of my family. Please, fight with me.
Alzheimer's Speaks believes working together and sharing knowledge is the best way to win the battle against this disease. Please explore the site and share your thoughts.
This was a very interesting post on one of my Linkedin groups
