Posts Tagged ‘Speaker on Dementia’

NAPA – National Alzheimer’s Plan ACT Needs To Add Teleconferencing for Equal Access

Help The True Voice Of Dementia

Be Heard…Those Diagnosed

Hi Everyone,

I hope you can help us. We are trying hard to get the NAPA (National Alzheimer’s Plan Act) Advisory Council to allow teleconferencing which would enable more people around the country to have their perspectives heard. Especially those with dementia.  In this day and age it is totally ridiculous technology is not being leveraged to cut costs and increase engagement.

For me personally and many others, the time and cost of travel prohibits involvement.  For those with dementia having them travel alone can be a potential safety issue and can increase stress which can than trigger symptoms.  For a loved one to accompany a person with dementia we have now upped the ante on cost and time. Their care partner most likely would have to take time off of work to boot.

Please make some statement about that as I plan to.  Please speak up for those with dementia.  They need your help and so do those that care for them. Now is not the time to sit idle.  Know your voice matters.  Know the more voices asking for the same thing make a movement.  Become part of a critical movement to improve lives for those living with dementia.

If you think dementia is a disease of one, please watch this

October 26th, 2015, is the next NAPA meeting and we would love to see a large response to our request which can be presented to the committee.  I am asking our community to take the few minutes  to write and send an email to napa@hhs.gov  for their support to leverage basic technology and add teleconferencing to their meetings allowing all people with dementia the ability to participate.

NAPA – National Alzheimer’s Plan ACT

Needs To Add Teleconferencing for Equal Access

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Thank you in advance for your support!


For more information on Dementia and Caregiving Check Us Out


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Let Lori La Bey Empower and Inspire Your Group on Dementia.

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New Video On Younger Onset Dementia

Once again Bakhus Saba does a great job raising awareness and shifting perceptions about Dementia.

Thanks Bakhus!

For more Information and Resources on Dementia

Check Out Alzheimer’s Speaks Website Below

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Need A Speaker, Trainer or Consultant on Dementia  Contact Lori La Bey


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Dementia – Celebrating Life – Every Moment We Get

Celebrating Life Every Moment We Get

 great on of grandma laughing w hat onI apologize for not wishing each of you a marvelous New Year in 2014.  

Please know I have sent blessings out to each of you for a fantastic new year.

I just have been a bit busier with my own family over the holiday season.

This year, like three years ago I applied to sign my Mother up for hospice.    For those of you who are new to following the blog, mom has been in her end stages of dementia for the past four years, has been in a nursing for 12 years and has memory problems for over 30 years.  Three years she had a medical change…  She started having tremors.   Back then I applied for hospice services for her too.  She was approved.  Given her condition improved during the hospice period, she was released from the service, yet continued in similar condition and continued on in her end stages of Alzheimer’s.

Just before Thanksgiving this past November, mom had a grand-mall seizure, another significant medical change.  Given this change and her being more withdrawn and sleepy, I decided there was nothing to loose by applying again for hospice.  Mom was approved.  I was thrilled she would get additional one and one services:  pastoral, music therapy, massage, additional personal cares, social worker, RN and more.  So far, mom has been responsive at times to some of the services: smiles, giggles, a twinkle in the eye and even a shimmy to the music.  Each of these are huge signs of connection.  I know if compared to a “normal everyday conversation” you have with your friends and family, theses signs appear minimal at best.  To that I say, compare moms responses to that of a small child.  The times a child smiles at you, tries to say a word, giggles or gives you eye contact.  In these situations we celebrate.

Why Is It That When A Person Is

Older Or Ill In These Situations

We No Longer Celebrate Life? 

This is a question I never have understood the response I see.  Even though mom is responding, there are still many more times she sleeps, is unable to give eye contact, or respond with one word, giggle or show body movement.  In fact, I’ve found she seems to be responding more to my daughter than me.  Some people ask me if I’m upset by this, but in truth I”m thrilled when she responds to anyone.  I take joy in each and every moment shared with me.

New Year’s Baby – A Time For Celebration!

erin cash lexi grandma all smiling me mom danielle listening to the chicken dance cardfrom tom and maureen

Mom Turned 86 this New Years Day. 

For 2 1/2 hours mom was pretty alert – eyes open, smiles and giggles and even some one liners and out-and-out laughter.  This was a huge gift for all of us.  Normally mom can’t stay awake more than 10-20 minutes at a time.  What a precious time we all had with her.

Happy Birthday Mom!

tom maureen mom all smiling 2 erin sarah grandma and kids 3

Next time you are with someone with dementia no matter what stage they are in, I recommend you stop thinking about what has changed or what you have lost.

Instead, Start Looking For What Is The Same. 

What are the precious things you still can share with one another? I think you will be pleasantly surprised at what you find if you chose to look.

danielle steve grandma tired grandma laughing hard a=eating chipps dip brownies

For Information on Dementia and Caregiving

Check Our Website Below


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Start The Chatter –

September is Alzheimer’s Awareness Month

Join The Cause!

Start the chatter by having a simple conversation about dementia.

Remember, it’s not about having the answers, it’s about having the discussions to find out the needs of others and sharing that information to create solutions to the help those affected by the disease.

Here are some simple questions to get you started.

Do you know anyone with Alzheimer’s  or another form of dementia?

If so, what have you heard about the disease?

How does the disease make you feel?

Have you ever really talked to someone who has the disease?

If so, what was it like?

Have you ever had a heart to heart with someone who is taking care of a loved one with dementia?

What did they say about the disease? How are they doing it?

Does the thought of someone you love getting dementia scare you?

Have you ever thought you might have problems with your own memory?

Who would you tell and what would you do if you thought you had memory problems?

Do you think it would effect your insurance coverage?

How long do you think you could still work if you got dementia?

How would you like to be treated if you had memory problems?

Who would you want to take care of you and where would you like to live?

Would you still drive once you knew you had the disease?

Have you thought of getting long term insurance just in case you get dementia?

Have you ever done anything to support the fight against Alzheimer’s and Dementia?  If s, what?

How would you like to help improve our dementia care culture?

The list of questions you can ask and answer is endless.  But these hopefully will get you started.

Please tell us about your conversations.

We would love to hear from you.

For Information on Dementia

Check Out the Resource Directory on our Website.

Maybe you have information you want to add to the site.

We would love to have you join us in making information easy for people to find.



Looking for a Speaker or Trainer


on the Alzheimer’s, Dementia or Caregiving


Contact Lori La Bey


You can find a List of Her Programs here

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