Dementia Journal
October/November 2015

The Positive Approach team is celebrating the one year anniversary of the Online Dementia Journal!  
We appreciate your support.  
Stay tuned for some updates and new features in 2016!



Teepa is an advocate for those living with dementia and has made it her personal mission to help families and professionals better understand how it feels to be living with dementia related challenges and change. Her company, Positive Approach, LLC was founded in 2005 and offers education to family and professional care partners all over the world. Her goal? Making a mind at a time.  

I Am Who I Was, But I'm Different: Changing Skills in Being the ME I Choose to Show Others
by Teepa Snow, MS, OTR/L, FAOTA
We all have a variety of personas we use in various life situations. We behave differently based on our audience, the environment, and the feedback we receive. Even our appearance will change based on where we are and with whom we are spending time. A person's behavior tends to be quite different while attending a worship service versus having a close friend over to watch a hotly contested ballgame. A key difficulty with dementia is that the person's ability to successfully interpret the environment and select and perform the socially acceptable role is gradually lost. The loss leaves only the private self on view at all times resulting in behaviors that others find irritating and problematic in public situations.
The purpose of this article is four fold. The primary purpose is to discuss the various selves we use. Second, we will identify how we typically determine which self to show in differing situations. Then we will describe the impact of dementia on one's ability to choose between our different selves. Finally, we will identify strategies that may be helpful in training staff and family in coping with the problems inherent with this loss.
There are generally four different selves we portray in our lives. They are the community self, the worker self, the home self, and the private self. For each of these we have a different set of behaviors, clothing, activities, and language.

O ur community self is generally our most polite and potentially artificial self. It is developed throughout our life and generally guided by parents, teachers, and social norms. When we are in this role we tend to wait in line, hold doors open for others, and maybe most importantly, bite their tongues when they have a thought that isn't socially acceptable to share.
Our worker self is often similar to our community self; however, it tends to be more focused as well as filtered. Our behavior related to this self centers more around the interactions with, and expectations of, supervisors, colleagues, and possibly customers.
Our home self is a more relaxed version that we share with those we are most comfortable with; this could possibly include family members and close friends. This self 
tends to be less filtered and you may say things that your community self  or worker self would find too risqué. You do this  because you are with people who know you best and accept your words and actions without being offended or turned off.
Our private self is our most honest and comfortable self. We typically only use this self when we are truly alone and therefore no one can
judge us. This self may walk around the house in little to no clothing, drink straight from the bottle, or say anything that comes to mind.
So how do we determine which self to use? We interpret the environment using our five senses and memories of similar experiences and what was expected. We engage our pre-frontal cortex which regulates impulse control, allows us to make decisions, and be logical, reasonable, and rational. In addition, the pre-frontal cortex allows us to be aware of ourselves but also to see the perspective of others. Our memories and thinking skills allow us to determine the presence of others, the identity of these people, the meaning of their non-verbal behaviors, the meaning of their words , and their tone of voice. These abilities also help us identify which activities could or should be done here, the types of things we have done here before, and our emotional responses to these activities. Once we figure all of this out, we select our persona and put it on. We then function as that self until there are cues and information indicate that we should change which self we are using.
So what goes wrong with this system when dementia strikes? In order to understand how the two issues are related it is important to review some of the key features of most dementias.  Difficulty with impulse control, immediate memory and recall, problems with language interpretation and abstract comprehension, difficulty with higher order problem solving skills, and impairment of mental flexibility are all hallmarks of early dementia.  The person can't always restrain the desire to say or do what they would like rather than what is socially expected of them. The person does not get the message being sent in the words and phrases being used due to inaccurate or inadequate connections between semantic memories and the current event. The person can no longer reason through a complex social situation or unfamiliar environment and so makes errors in behavior based on partial understanding or faulty cause and effect reasoning. As the brain is being destroyed, the person loses the ability to look at the situation from multiple viewpoints as well as the ability to take familiar information and reorganize it and categorize it in a new or unusual way. The result is that the person is forced to use only the more routine and familiar responses regardless of the situation due to an inability to be flexible.
As the disease progresses these deficits in function become more and more pronounced. Additionally, long-term memories become less available and accurate. The ability to distinguish actual historic events from what might have been wished for or dreamed of is greatly diminished and the person begins to confabulate. The person is also experiencing impairments in visual perception and auditory comprehension that 
affect everything they see and hear. The more basic cognitive functions also begin to deteriorate at this time. Attention and concentration are impacted. This makes it difficult for the person to remain focused resulting in distractibility or inattentiveness to the most important facets of the environment or situation. It also makes it problematic to change the focus of attention or activity, resulting in perseveration and repetitive behaviors and actions, or lack of initiation.
These changes eventually destroy the ability to recognize people, places, objects, familiar routines, and consequently what should be done where, when, and with whom. The ability to select which self to use when is affected. One of first behaviors that causes concern is a person will display inappropriate behavior in public places. They may be at a luncheon and talk about how boring the speaker is, even though the speaker is within earshot. They may describe their caregiver as "that fat girl, over there". They might tell their spouse of 40 years, "I wish you would go home because I want to watch this show and you are bothering me". In other words, I no longer can recall and adhere to the rules of politeness. As the disease progresses, it becomes more and more difficult for me to figure out which self to use and it also becomes more difficult to sustain a public or work self for any length of time due to worsening impulse control and decreasing interpretative skills. If I can't recognize you as my daughter, I will not take on my family self. If I have been using my private self, I may continue to use it in a very public situation. In this case, I may reach across the table to take your dessert because I don't see mine or because I ate mine and would like some more.
It is at this stage we often hear family members and caregivers say that their loved one would never have done something like this. We hear that this person was always very soft spoken and gentle and never yelled, swore, or got angry at anyone, no matter what. In these cases, it is probable that the person had these thoughts and was able to control them or, when in the privacy or his or her own space, did have these very reactions, BUT that he or she never let it show in any other situation. With the onset of the disease, however, the person is no longer able to contain those words, thoughts, feelings, and reactions and they are now being used in family, work, and public situations. On the other hand, the person who had the greatest consistency between his or her private self and family, work, and public selves will tend to have the least change in behavior. In these situations , we typically hear family members and caregivers say "she has always been that way" or "that's just mama, she's like that".
Tips for care partners and family members to improve the quality of life for the Person Living With Dementia (PLWD):
  • Improve the cues and make cues stronger and more consistent
  • If going out for lunch - put on dress up clothes and go to a quiet place
  • If bathing - have a warm comfortable space, use other familiar and habitual routines to lead up to the event, keep your tone and approach friendly and intimate
  • Reduce the number and frequency of role change demands
  • Use our selves to foster the use of theirs
  • Provide opportunities for using these selves
  • Use valued cues to elicit the self most desired in the situation
  • When the public, work, or family self becomes unusable - stop setting up situations that require one of them and then becoming frustrated when the person is not able to perform
  • ALWAYS respect the person and appreciate the unique self you are seeing and experiencing
Tips for family members and caregivers to understand what is happening:
  • Knowledge is the key to stress reduction. Use the following simulation to help get an appreciation for the different selves you have and use almost effortlessly
  • Recognize the changes that happen when someone develops dementia and how this might impact expectations, interactions, interests, relationships, and outcomes.
  • Imagine the value and importance of various cues, props, and environmental supports in helping or hindering various self-expressions when internal systems are failing. Learning to match what care partners would like to see with cues that foster those performances are essential
  • Talk openly about the need to reduce the demand for using the selves the person may no longer be able to master as the disease progresses
Consider the following activity in order to better understand how hidden aspects of your personality or situation-driven behaviors may impact what people think you about you versus what you believe or know about yourself. Complete the questionnaire from four different points of view.
  • Work with someone you have never met before to fill out the sheet, knowing it will be shared with a large group of people you don't know at all.
  • Work with a co-worker of colleague to fill out the sheet, knowing it will be shared with the rest of the workplace personnel
  • Work with a spouse, close friend or significant other to fill out the sheet, knowing only the two of you would ever see it
  • Complete the sheet for yourself - no one else will ever see it or hear about it, but it affects how you will spend the rest of your life so be as honest as you can
Talk with someone or think about how answers varied, how your emotions and affect changed, how your language altered, and consider how many times you might have indicated "well it depends" - what does this mean for the person living with dementia and others around them?
What if YOU were to develop dementia? Think about the value of the old saying
" thine own self be true...thou canst not then be false to any man." (Shakespeare)
In other words, practice being yourself now.  Pay now or pay later.
presented by the The Pines Education Institute and Teepa Snow

Caring for your loved one living with a form of dementia in the home setting can create challenges those on the outside can only imagine. Without a strong support system and hands-on skills, this very difficult job can easily leave caregivers feel stressed, overwhelmed, and isolated.

Would you like to know how to build a care environment that best balances your loved one's needs with your own well-being and abilities? 

You will learn:  
  • Practical tips and ideas to problem solve existing challenging situations for a more joyous caregiving relationship 
  • How to prepare visitors and family members for more meaningful visits
  • The value and difficulty when using multiple medications 
  • How to create calming surroundings to reduce the risk of sundowning and other distressing behaviors
  • How to apply Teepa's "Six Pieces to the Puzzle™" and "GEMS™" methods to discover your loved one's retained skills and interests, thereby creating a positive and more fulfilling care environment for the both of you
  Order this DVD from the Dementia Care Academy

New Tools for Understanding Behavioral Expression
by Virginia Payne

In 2011, the Baylor Health Care System Foundation received a
grant from the Deerbrook Charitable Trust to develop education around caring for older adults. Throughout the grant period I provided education for CNAs in the skilled nursing facilities. During the time I spent with CNAs, I learned that a lot of care was provided to residents with cognitive impairment. Staff shared some of the difficulties they had in providing care to cognitively impaired individuals. As a result, I became very interested in learning about dementia. I began searching the literature and seeking out experts in the field of dementia. I thought, "How can I help with training the CNAs to become more aware and knowledgeable about dementia. What skills would help them take better care of the person living with dementia (PLWD)?"
During this time I also worked with the Baylor Scott & White Health Center for Learning Innovation and Practice (CLIP). This team consisted of Advanced Practice Registered Nurses (APRNs), an app developer, a 3D graphic designer, and an analyst. I worked with Sharon Gunn, DNP, RN, ACNS-BC, CCRN, Clinical Nurse Specialist.  I provided the content and she made it come to life in the iBook,   Dementia: A Practical Guide for Caregivers. This book was created for anyone who wants to know more about dementia and how to care for a person living with the disease. It is designed to be a resource for the healthcare worker or family caregiver(s). You can read it in order, jump directly to the content that is useful for you, or quickly troubleshoot a behavioral expression in the chapter, "Putting it all together." We gathered the information we found to be most useful in our experiences with people living with dementia, as well as from experts in the field. The free book is available in the App store for iPad and iPhone.
After the iBook was created, the algorithms in Chapter 9, "Putting it all together," were placed into a mobile App, DementiAssist (available on iOS and Android). The app was created to provide caregivers of a person living with dementia (PLWD) with a quick reference about common behavioral expressions, how to approach a PLWD, four common trigger areas as possible causes, and suggested actions to take for specific behavioral expression. 

Virginia Payne has been a Registered Nurse for 35 years. She graduated from El Centro College in 1980 with an Associate Degree in Nursing and went on to obtain her Bachelor of Science in Nursing from University of Texas at Arlington in 2010. She has been a nurse educator with Baylor Scott & White Health for the past 10 years. Virginia obtained her Nursing Professional Development certification 2015 and also became a PAC Certified Trainer 2015. Earlier this year, she completed a project involving joint education with several skilled nursing facilities to provide education to Certified Nursing Assistants (CNAs) using engaging, interactive learning experiences.

Register now for the
2016 PAC Approved Certification Workshops
Washington DC - Consultant workshop participants, coaches and Teepa.

When Abel is concerned about the changes he sees in his grandma, he climbs a tree and meets a wise peacock.  The Peacock helps Abel understand how to stay connected with his grandma, continue their relationship and focus on the love they share.   A Heart Full of Gems is a story that teaches children to pay attention to and share in the human connection that can be maintained when someone is living with dementia.

The book's appendix includes a practical dementia progression guide to help everyone adapt to the changes experienced when someone is living with dementia.  The GEMS™ model recognizes the dynamic nature of the human brain and its abilities.  GEMS™ advocate that everyone living with brain change, when given the opportunity, will shine.  

Written by Reverend Linn Possell and world renowned dementia care expert, Teepa Snow, this educational story is intended to help those of all ages. 

Details will be announced when the book is available for online purchase.


While physics and mathematics may tell us how the universe began, they are not much use in predicting human behavior because there are far too many equations to solve.
- Stephen Hawking

Courtesy Photo-NASA-2009

Alzheimer's Music Connect Presents the Ultimate CD for Country Music Fans

Alzheimer's Music Connect has assembled the best of the best country music and united it with our patent pending technological recording technique. This enhanced music is designed to amplify brain activity. Scientific research indicates the process stimulates a Care Recipient's most well preserved memories. The result is a calmer, more receptive Care Recipient capable of more rapidly making connections and completing thoughts.

Teepa says, "The critical thing is that we want to have the music spark the memories and then for us to engage with the person in why the song is important to them. This is where we find the human connection. " 

Living Well...Dementia World News
NEW Online Training Course:  Becoming Dementia

Available December 2015!

We all know why we love Teepa Snow and the PAC Team - the practical skills that they provide to help us provide better care for those living with dementia! Now we have a new way for you to experience the Teepa Snow information and approach from your own home!  This new, four-part, online course series called  Becoming Dementia allows you to gain Awareness, Knowledge, Skills, and Competence while sitting at your own computer.  

Course 1 - Becoming Dementia: Aware

The first course is titled Becoming Dementia: Aware.  This 3 hour course will allow you to dive into dementia in a way you never have before. Teepa will take you through the many areas of the brain affected by dementia and will give you skills and strategies for better ways to care. Along with the online course that you may take at your own pace, you will have an option to add a virtual PAC Mentor Coach who will help you with the information and assist you in getting your PAC Skills approved.  Whether you are caring for a loved one, caring as a professional, or simply interested in learning more about this disease called DEMENTIA... you have come to the right place. 

Details will be announced as soon as the online course becomes available.
Blackberry Winter

Blackberry Winter, commissioned and developed by Out of Hand Theater in Atlanta, is being performed across the country this season as a part of the National New Play Network's Rolling World Premieres.  

Playright, Steve Yockey, tells the story of Vivienne's struggles with caring for her mother, an Alzheimer's patient whose condition is showing signs of deterioration. In some of Yockey's most poignant writing to date, she confesses and confronts the myriad challenges of caring for someone who is vanishing slowly before her very eyes.

Read more:

This video from 2013 provide information into the development process of Blackberry Winter.
This video from 2013 provides insight on the development of Blackberry Winter.

Blackberry Winter is scheduled to open at the theaters listed below.  Please contact theaters directly to purchased your tickets.

Salt Lake City, UT
Atlanta, GA (Now Playing)
Sacramento, CA
Watertown, MA
Dallas, TX
Silver Spring, MD

Connecting With Nature to Reconnect With Others

One of the concerns that is often shared by people living with dementia is the lack of connection they feel due to an increase in depression associated with the stigma that surrounds a diagnosis. One group in the UK has used their knowledge and skills to create a program that connects people living with dementia to nature and one another.   Read this article from The Guardian to learn more about the program.



News from the Dementia Action Alliance

Please save Tuesday, November 17 th at 1:00 pm Eastern Time  for  a fascinating discussion on a  unique inter-generational program "Through Hoops to Hope:  Using Croquet to  Enhance Relationships and Engagement for People Living with Dementia."    James Creasey, founder and President of Jiminy Wickets, will share "why  and how" he is spreading croquet across three continents.  He hopes to include a participating student and individual living with dementia to share their perspectives as well.    
It is bound to stimulate lots of ideas for all to consider!   Additional details will be sent closer to the event  date.  If you have any questions or suggestions, do not hesitate email Jackie Pinkowitz or call 732.212.9036 .



If you know someone working or living with dementia who might benefit from the teachings of Teepa Snow, please forward this to them now. 

Be knowledgeable. Be prepared. Be positive.


If this journal was helpful to you, we would appreciate your feedback.  Please share your comments and further interest with us.