A Heartfelt Conversation With Those With Dementia “Please Talk With Us, Not About Us”

“Please Talk With Us, Not About Us”

A Heartfelt Conversation With Those With Dementia

Participants in the Early Memory Loss Collaborative support groups (for those individuals who have received a diagnosis of dementia) in Asheville NC decided that they wanted to share with others their experience of what it is to live with dementia. Different people from the groups have enjoyed talking at various events over the past year, including the 2012 SE4A Artisan in Aging conference. This video was made at “The Sacred Journey of Dementia” conference in Asheville NC on April 13, 2013. The panelists are Earl Thompson, Jane Garrison, Bill Leavell and Larry Stanley. At the end of the video is a short bio about each person. The panel is facilitated by Jane Sherman who co-facilitates their support groups and founded the Early Memory Loss Collaborative.

Thanks to panelists Earl Thompson, Jane Garrison, Bill Leavell and Larry Stanley; and Jane Sherman Facilitator of this discussion.  This information is so important to get out into the world.  Please contact Jane Sherman for more information or if you are looking for a great speaker at your next conference or training.

janeshermanemlc@gmail.com

To Learn More From Others With Dementia

Check Out Dementia Chats –

Ongoing Conversations With Those With Dementia. 

Watch Archived Episodes

Participate in live webinars on the 2nd and 4th Tuesday of each month

More information can be found on the website by clicking here

For additional resources check out Alzheimer’s Speaks Resource Website.  Just click on the logo below

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Residents at the Hebrew Home and RiverWalk Do a Fun Video on Aging Well

No matter what you hear on the weather forecast, we can guarantee sunny skies above the Hebrew Home. That’s because our first-ever music video, Walking on Sunshine, featuring many of the Hebrew Home and RiverWalk residents, is making its debut on May 30th. This is a perfect song selection as our residents bring sunshine, warmth and smiles to us and their families every day. Our decision to create a music video was an easy one – as we looked to capture the essence of our Living Well philosophy visually. From poetry reading to cooking to creating works of art, our residents are “living well” every day.

As Older Americans Month comes to an end, let this video serve as a reminder that age is just a number – not a mindset. Whether you are 22 or 92, your spirit and uniqueness remains with you. Age cannot define who we are – it is just one of many characteristics that belong to each of us.

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Living with the Challenges of Early Stage Alzheimer’s

Living with the Challenges

of Early Stage Alzheimer’s

Cannan and James Hyde share their story of living with dementia. James, diagnosed with early stage Alzheimer’s disease, and his wife, Cannan, tell how they are living with the challenges of the diagnosis and the unexpected turns it has presented in their lives.

Thank you so much Jane Sherman, Cannan and James Hyde  for your wonderful work making and sharing this video with the world.  Please contact Jane Sherman for more information or if you are looking for a great speaker at your next conference or training.

janeshermanemlc@gmail.com

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Music Prescriptions, Mobile Activities & Engagement

Click on the above logo to listen to the show

Music Prescriptions Effective for those Living with Dementia

Today Coro Health will be joining us to discuss the power of music and their modes and ability to engage people with dementia and to have them stay on task. We will also be reviewing their new APP Music First, which is ideal for easy access. You can get 3 hours of free music to test out the Music First APP for Alzheimer’s

Contact information:  www.corohealth.com        david@corohealth.com

Youtube Channel  http://www.youtube.com/user/CoroHealth

Activities Service That Come To Your Home!

Our Second guest will be Janet Calltharp, with Senior Activity Service.  This is a great service which comes to your home to provide meaningful engagement with your loved one.

contact information: www.senioractivityservice.com
email   info@senioractivityservice.com
They are currently located in the North Dallas area and would love to expand their services.

For Additional Services Go To:

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Memorial Day Gives Us A New Way To Attack Dementia

Dementia and Memorial Day

Memorial Day Gives Us A New Way To Attack Dementia 

Memorial Day is a special holiday where we honor those who have died serving our country.  Like many holidays, it has become commercialized.  One that kicks off the summer season and is highlighted in the titles of sales events.  I would like to see us get back to the basic of this holiday and in addition, use it as a tool to aid us as a country when dealing with dementia epidemic.

Our soldiers deserve our greatest respect and support as do those diagnosed with a dementia.  This is a disease which we have no control over and for all practical purposes is unavoidable since we do not know the cause.  Preventative measures are for the most part a guess.  They lean towards a healthy lifestyle in general but with no great proof these changes in lifestyle will help. Just ask those who have lived their lives engaging their minds, exercising, eating healthy and avoiding alcohol and drugs.  Bottom line people with dementia do not sign up for the disease, nor are they recruited.  They are kidnapped in the middle of the night with no warning.  Their brains held captive in an enemy camp, an unknown world with no idea of what is in store for them from moment to moment.  The pain and isolation they feel is never ending and their life will never be the same.

How Can The Memorial Day Holiday Help the Dementia Epidemic?

Keep in mind it is my belief Memorial Day and Memorial Weekend, have always been a time for the public to reflect, to be grateful and to show our deepest appreciation to those who have given the ultimate sacrifice, their life to serve our country. Many of those with dementia have been people who have served with those that have lost their lives. These memories of service to our country are most likely deeply rooted in their memories.  Others have taken great pride in honoring those that have protected and served our country.

Many of us, go out to the cemeteries and place flowers or flags at grave sites in remembrance of their heroic efforts.  Others celebrate this holiday gathering with friends and loved ones to  raise our flags and for some a glass in honor of those who have served.  I would like to add a third idea to the mix for those dealing with dementia.  I would like to recommend that we take the primary principles of celebrating and honoring our military heroes on Memorial Day,  and adapt it to everyday life with dementia.

Reflect,

Be Grateful for what we still have today as well as what we have had in our life time,

Show Our Deepest Appreciation and love for those diagnosed with the disease

and add one more important element – Acceptance

I have found without adding the last piece of acceptance, the other three can be for most a temporary moment in time.  One that doesn’t change the way we live our life.  I believe by taking these four concepts seriously and actually changing the way we look at our world we have the ability to live life in a rich and full fashion.  One that values what we have in our life.  One that looks for the joy in the simplest of fashions.  One which teaches us to create remarkable moments of engagement and to relish the relationships in our life.

By adopting this life philosophy, you will be amazed at the stress that drops from your life.  I know, as this is the way I have chosen to live my own life.  I’m not saying I’m perfect at it but I am getting better ever day at releasing so much that I used to worry about…  So much I had no control over.  I chose to live in the moment and Reflect, Be Grateful, Show Appreciation and Accept Things For What They Are. My life feels realigned and balanced.  A peacefulness which I thought I had lost has come back into play.  I recommend everyone try this and just see what happens.

Imagine what life could be like, if as a country we chose to attack the Alzheimer’s and Dementia Epidemic in this fashion.  One which costs us nothing but to switch our mindset.  In doing so, it would also slow us down to appreciate what is before us.  This philosophy could encourage positive engagement and  help alleviate unwanted reactions; or behaviors as we like to call them.  One that would give both sides purpose.  One which would help researchers identify what the heck the actual symptoms of this disease are by removing environmental impacts of stigma and isolation.

I for one dream of a day the world decides to join me in this mindset.

Imagine if this expanded to how we see the world in general.  To everything we think, do and say.

What would our world look like then?

Are You With Me On this?

I would love to hear your thoughts and ideas.

These are pictures I took today when visiting the graves of our family soldiers

I am a member of AARP’s blogger kitchen cabinet on caregiving issues. All opinions are my own. 

Visit the AARP Caregiving Resource Center for help and more information at aarp.org/caregiving.

or www.aarp.org/relationships/caregiving

check out Alzheimer’s Speaks for additional resources on Dementia and Caregiving

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Book Review – You Say Goodbye and We Say Hello, The Montessori Method for Positive Dementia Care

Book Review by Carole Larkin

You Say Goodbye and We Say Hello,

The Montessori Method for Positive Dementia  Care

To say that Tom and Karen Brenner’s book “You Say Goodbye and We Say Hello, The Montessori Method for Positive Dementia  Care”  is the Guidepost ( to use their words) for books to be read by family and professional caregivers does the book and injustice. The book is far, far better than that.  I think this book should be required reading for every caregiver support group (dementia or not) in America, and maybe in the whole world (in translation of course). Tom and Karen are clearly gentle souls with deeply compassionate hearts. Even the words that they choose to convey their thoughts in this book are soothing, calming and yet upbeat. They truly walk their talk.

They give us a thoroughly thought out system (the Montessori system) to use as the conveyance for us to follow their lead in drills down to compassion and positivity. They give us specific tools (Montessori based activities and thorough explanations of how to carry out those activities) to use to accomplish the interactions that lead to a good day for both caregiver and the person with dementia. Tom and Karen teach us in a number of different ways, via straight instruction, via stories about themselves, and most effectively with stories about those with dementia that have been positively impacted by the Montessori method of care. They give us “Guideposts”, a one sentence snippet that is easy for caregivers to remember, while succinctly getting across the essence of what they are teaching us at that moment. They even tie their message to Beatles songs which is of course, perfect for us Baby Boomers and younger generations.

 This book is so good, you instantly feel calmer and more confident in yourself even while reading it. And isn’t that what we need in our 24/7 roles as caregivers for our loved ones? Don’t wait another minute. Get this book NOW!

Amazon

Tom and Karen Brenner’s Website

Link to Brenner’s Radio Interview On Alzheimer’s Speaks

Carole Larkin

By Carole Larkin  MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care. She has a Master’s of Applied Gerontology from the University of North Texas, is a Certified Alzheimer’s Educator, is a Dementia Care Practitioner, is a Qualified Dementia Care Specialist, and an Excellence in Care Specialist at the Alzheimer’s Foundation of America, as well as a Certified Trainer/Facilitator of the groundbreaking dementia care training tool, the Virtual Dementia Tour Experience She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She consults with families telephonically nationwide on problems related to the Dementias. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.

For Additional Resources Check Out Our Website

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Can Cognitive Rehabilitation Lead To ‘Rementia’?

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?

Check out Jackie’s website

Mark your calendars to listen to Jackie on Alzheimer’s Speaks Radio on

June 4th at 11am EST 10am CST, 8am PST, 4pm London

For additional Resources Check out Alzheimer’s Speaks

Contact me if you want to be included in our resource directory…It’s FREE

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Alzheimer’s Speaks Radio on Monday 5/20 Avoiding Scams Plus Living and Loving a Spouse with Dementia

Alzheimer’s Speaks Radio on Monday 5/20

Avoiding Scams Plus

Living and Loving a Spouse with Dementia

Click Above to get to the show 

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.

http://minnesota.bbb.org/senior-outreach/

You can reach Gary here:

gjohnson@thefirstbbb.org

Phone:  651-695-2424 

Another Resource is the Internet Crime Complaint Center (IC3) which is a partnership between the Federal Bureau of Investigation (FBI) and the National White Collar Crime Center (NW3C).

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:

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Dementia: Action For Global Change

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

Click here to buy the book on Amazon

  Click on the photo below to see a powerful video which will give you a glimpse into Cathy’s work

For more Resources click below:

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Dementia Chats Recording from Today Very Interesting Topics Covered By Our Experts with Dementia

Dementia Chats Recording

May 14th, 2013

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.

For more information visit

 

 

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