Dementia Journal
August 2015
 

IN THIS ISSUE

TODAY'S VOICE FOR DEMENTIA
 

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 difference...one mind at a time.  

Teepa   
Using Cues as a Care Partner
by Teepa Snow, MS, OTR/L, FAOTA

Through my career as an occupational therapist, I have conducted research and provided direct care to a wide variety of people, including those living with dementia.  This has allowed me to learn how people living with dementia navigate their world when challenged by the effects of a changing brain.  I would like to share with you some of my observations and some cues provided to us that can improve our work as Care Partners
 
Sensory systems - what a person sees, hears, feels, smells, and tastes - help human beings understand and interact with their world.  All people live in continuous cycles of taking in sensory data, processing, and then using that information .  When someone has dementia, there is interference within the sensory processes.  People living with dementia want to get along in the world and are trying to figure out how to do tha t just like anyone else .  When working with a person living with dementia you will encounter some challenging situations.  What you might be experiencing is a breakdown in his/her sensory process.  And while it might seem confusing and create frustration for you , this is likely a person's best attempt to understand and meet their own needs under the circumstances and with the abilities they are living with in that moment. People are driven and need to stay engaged with the world around them, although the abiliti es to do so safely and well are being eroded . Eventually, due to the effects of dementia, those we are caring for will need our help to do this.

The first and most important step is to observe.   If you take the time to observe, you will often be able to discover the abilities a person living with dementia is actually working with at any given moment.  If we can understand more fully what someone can do, instead of focusing on what they no longer can do, then we can choose to support and care for them in a way that will make sense.  This begins with observations, not assumptions about what is happening.
 

Second, look for Sensory cues.  All human beings are giving us clues and information about their ability through their action or behavior with others and the environment. Take an inventory by honestly observing and respecting how the person living with dementia is relating to the world through their five senses.  When you observe the person doing or not doing something, it will provide you with valuable information about  the person and his/her abilities.  You will see both what that person is getting from their environment and their body as well as any unmet needs s/he is trying to address, but isn't able to on his/her own.

  • Visual cues - Notice what a person is focused on. What can/do they see that might be different from what you are able to see?  Visual cues are typically a human being's first method and favorite way to take in informational data. Over time dementia causes many changes in the brain's occipital lobe impacting a person's visual field, object recognition, figure-ground awareness, and depth perception.  Due to these changes, a person literally may not know you are sitting next to them. They can't see you, even though you might be able to see them.  If you have observed and are aware of this, then you can help by moving yourself into a person's visual field, at a personally comfortable distance before attempting to communicate or provide support or care. 
  • Auditory and Verbal cues - If a person living with dementia is speaking to you but their words are not readily available, misused, or misinterpreted, what is the rhythm, the intensity, the pattern, the volume of what they are saying?  Consider what they are saying or attempting to communicate with their actions, if not their words.  Notice how they respond to you when you speak - or if they respond at all. A lack of response can also be a "cue" about ability in a particular moment.  Do they hear you?  Did they actually process what you said?  Are they giving you a response that suggests they understood? What is happening in their body that might tell you?  Set both of you up for success by looking for a cue from them for confirmation that what you thought transpired actually did.
  • Movement and Touch cues - When you are observing a person, what is drawing interest, what is being avoided. What skill versus strength abilities are noted? Are there objects or tasks being attempted or avoided? Is there an action or reaction to movement, touch, or stillness that is worth exploring or paying attention to?
One important note is that typically people living with dementia exhibit curiosity, but frequently lack a sense of safety awareness. They may also see our behavior and efforts to keep them safe as threatening or unnecessary. Even though our failure to address safety concerns can result in problems and injuries, it is also likely that our impulsive attempts to enforce limits without thoughtful observation and use of skills can take a risky situation into a dangerous one in only a few seconds.

It's important to understand and be aware that over time there will be a change in all five experiences of sensation for a person living with dementia.  This means change in visual abilities, auditory processing and comprehension ability.  Please be careful not to confuse loss of comprehension with the hearing of sound, as these are two different things.  In addition, one's ability to feel and manipulate an object, including touch sensation and find motor skills, will change over time.  You will also notice a change in the ability to accurately identify smells and tastes as well as changes in a person's awareness of dangers associated with particular situations or items. 

Every sensory experience is changing for the person living with dementia. This impacts behavior, the giving and receiving of communication, and therefore, relationships with others.  If we truly understand this, and are willing to observe and stretch ourselves by looking at what's happening through the lens of curiosity, we can then further understand and choose to support and care for others in ways that make more sense.  These changes in perspective will improve relationships and assist in setting realistic goals for care partner interactions. Most importantly, these changes give the person living with dementia - who is doing the best they can with what they have - a greater sense of value, individual choice, and sense of control throughout their life, as they are living it.


Video
Video Spotlight:  Challenging Behaviors in Dementia Care:  Recognizing & Meeting Unmet Needs
presented by the The Pines Education Institute and Teepa Snow

Anger, physical resistance, swearing, hallucinations, and sexually inappropriate actions are just a few of the challenging behaviors that can occur when a person has dementia.  as a caregiver, any of these behaviors can leave you feeling distressed, hurt, embarrassed, and unappreciated.  Teepa's newest video provides information on:

  • Which physical and emotional needs can cause challenging behaviors.
  • Identifying the cause; easing the discomfort and calming the person in distress.
  • Hands-on techniques to connect and comfort using visual, verbal, physical, emotional and spiritual communication
  • Creating a deeper and more meaningful care approach by using Teepa's "Six Pieces of the Puzzle."

 

Challenging Behaviours in Dementia Care:  Recognizing & Meeting Unmet Needs
Challenging Behaviors in Dementia Care: Recognizing & Meeting Unmet Needs
 
Order this DVD from the Dementia Care Academy

PartnerPositive Partner:  MedBridge Online Courses



MedBridge believes education is the most powerful way to improve lives. They provide clinicians a comprehensive education platform to continue their education, engage patients, and improve outcomes with evidence-based online curriculum, home exercise programs, and patient education tools - all included in one annual subscription. Get unlimited access to: 
  • Continuing Education: Growing library of 300+ accredited courses taught by industry-leading professionals, featuring motion graphics, 3D models, and live patient demos
  • Patient Education: Customizable for all levels of health literacy, featuring 3D models and animated videos explaining common conditions
  • Home Exercise Programs: Choose from thousands of exercises for easy-to-build HEPs, helping your patients get better, faster
     
Positive Approach is pleased to partner with MedBridge to offer the following accredited online courses:
 
 
This session will help learners develop better interaction skills when working with people with Dementia and their families. The goal of this course is to enhance treatment session outcomes and quality of life for those living life with some form of Dementia within their support systems. More 
 
There are many changes in behavior, communication, and interactive ability that take place when someone is living with Dementia. Behaviors observed may appear strange, unusual, dangerous, or frustrating to others. This course is designed to help professionals better understand "why" things they see are happening and "how" behaviors are connected to an individual's change in sensation, sensory processing... More 
 
 

Offer Expires 09/20/2015. Available online ONLY.

PAC Approved Consultant Certification 

Victoria, BC - Consultant workshop participants, coaches and Teepa.
The Consultant Certification program is designed for professionals who counsel and advise families working through dementia related challenges. In addition to dementia related awareness and knowledge, Teepa teaches effective communication techniques, strategies to connect with clients in a meaningful way, and methods of providing the right resources at the right time. PAC Approved Consultants are provided access to four Teepa educational clips to use with clients.

Recommended for: Geriatric Care Managers, Executive Directors, Marketing Directors, Senior Living Advisors, Marriage and Family Therapists, Stephens Ministers and Elder Law Attorneys.
 

PAC Approved Certification Dates for 2016
will be announced in the
September Edition
of the
Online Dementia Journal
Project

Positive Project:  Design Matters
by Juliet Charney
 
What does interior design have to do with admitting someone who has dementia to the hospital? A whole lot, as it turns out. Just ask the researchers at Informe Design, curators of a vast array of data and evidence-based research that can improve people's lives in various health care settings.  It is their job to inform those who design the interior of hospitals and rehab centers, so that the physical settings contribute to the healing process.  

At least one in five visits to Emergency Units are from seniors, and half of those are admitted for urgent care.  Designing for mobility, safety, physical activity and rehab for the elderly and people living with dementia has become the hallmark of most long-term care homes. But acute care buildings have not embraced these unique needs, according to a report  from Informe Design written by Tamara Dvorsky, President of MCD Design Group Ltd., and Joseph Pettipas, Director of Interior Design at HOK Canada.

For those experiencing even mild dementia, especially seniors, hospital visits not only increase stress but often trigger confusion, fear, and even depression.  The large, bright, often noisy institutional atmosphere only makes such patients even more anxious, confused and dependent on hospital staff.  Safe movement around a space for a person living with dementia requires well lit, clearly marked spaces void of obstacles. The dementia patient must feel secure before they are willing to move about.

As baby boomers age into this demographic, it is crucial that acute care facilities understand the mobility needs of patients who are living with dementia. The report authors call for six "interventions" that compensate for physical and cognitive losses, six design factors every hospital needs to address, in order to prepare for the coming "senior tsunami".

For example, lighting - in older people it can take up to seven minutes for the eyes to adjust to sharp changes in light.  Using more even light levels and illuminated light switches help immensely to prevent falls and resulting fractures.  Informe Design identifies the six crucial environmental factors affecting dementia healing and in-care mobility as:
  1. Walking surfaces
  2. Light levels
  3. Atmosphere (social, not institutional)
  4. Scale (small and quiet, not large and confusing)
  5. Clarity of design and layout
  6. Color coding
READ THE REPORT

As a care partner, take some time to assess the environment around you.  What is working and what isn't?  Perhaps some small changes could make a BIG difference in the lives of those living with dementia.

Additional Resources:
*    New York Times: Trapped in the Hospital Bed
*    For General contact inquiries please email Informe Design


The Mission of Informe Design is to facilitate interior  designers' use of current,
research-based information as a decision-making tool in the design process, thereby 
integrating research and practice.

Meditation
MEDITATION: Movement and Sensation
 
Living Well...Dementia World News
 
AwareAWARE
Dementia Express  
 
A new study from Sweden's National Institute for Health and Welfare finds that  individuals who are at risk of dementia have a much better chance of staving off the condition by combining mental and physical exercise.

Seniors at risk for dementia were found to retain much better cognitive functions when coached on physical exercise, diet and heart health, something Dr. Sandeep Grewal says could change how the condition is treated. Keeping the body in shape can help stave off dementia, according to a new study, where seniors who were coached on a healthier diet and regular exercise saw dramatic results in cognitive functions. 
 

KnowledgeableKNOWLEDGEABLE
2015 Pioneer Conference Recap

PAC™ attended the 2015 Pioneer Network annual conference this month in Chicago and celebrated 40 years of culture change in aging achievements in the US.  This grassroots movement was founded by Carter Williams with the intent to transform the culture of aging in America. Pioneer Network recognizes the need to create ways of living and working together that are different from the traditional models.  Their vision for America is a culture of aging that is life affirming, satisfying, humane and meaningful.  Download the Culture Change Consumer Fact Sheet and SAVE THE DATE for next year's conference July 31-Aug 3rd in New Orleans. 

A few of this year's highlights to pass along:
  • Remembrance of passionate dementia advocate and activist Dr. Richard Taylor shared by friend Dr. Al Power 
  • Consumer Voice celebrates and shares the history and changes in Long Term Care since the 80's
  • CMS suggests organizations assess their community culture using the Artifacts of Culture Change Tool 
  • Director Dan Cohen speaks at showing of Sundance Film Festival Award Winning Documentary: Alive Inside: The Story of Music & Memory 
  • Filmaker Jim VandenBosch shares: Wrinkles a full length animated film by Ignacio Ferrares to help conference attendees understand more about experiences  in LTC
  • Pioneer friend Dr. Richard Weinman, retired professor of broadcast communications at Oregon State University, author and former radio personality, opens up about his experience of life in an Assisted living in The Thin Edge of Dignity.
SkilledSKILLED 
Dance Therapy for People Living With Dementia  

One thing people living with dementia excel at, according to Donna Newman Bluestein, is "tuning into other's feelings." Bluestein, American Dance Therapy Association spokeswoman,  has been using dance and movement therapy with seniors for over 35 years.  She says that when a person with diminishing cognitive abilities moves, even in small ways, and sees their movements mirrored back, they feel less isolated and more connected. 
 
As dementia progresses and a person moves though the GEMS Stages, they gradually lose verbal and fine motor skills, and take their cues more from non-verbal movement, becoming keenly sensitive to:
  • Our body language
  • Our use of the physical space we occupy and share with them
  • The rhythms of our movement
For example, in the Ruby Stage, pulling or pushing may seem very scary to the person with dementia, while a slow friendly or even rhythmic approach will reassure. 
 
Bluestein uses dance therapy to connect with seniors who are "unable to access motivation" on their own, but will connect to their inner vitality through rhythm, movement, and music.


Dance/Movement Therapy & Dementia 
Dance/Movement Therapy & Dementia
    
Recipient of the American Dance Therapy Association's 2013 Exceptional Service Award, Donna Newman-Bluestein, M.Ed., BC-DMT, CMA, LMHC is a board certified dance/movement therapist, certified movement analyst, licensed mental health counselor, educator, trainer, speaker, entrepreneur, and dancer. She is a senior lecturer at Lesley University and the official spokesperson for the American Dance Therapy Association.

Additional Resources:

2015 ADTA Annual Conference -  Including Donna Newman Bluestein and Astrid Struikjk's pre-conference intensive,    Affecting the Lives of People with Dementia through Embodied Attunement and Expressive Movement. 



CompetentCOMPETENT
News from the Dementia Action Alliance

How Do YOU Talk About People Living With Dementia ?

 "Language shapes our behavior and each word we use is imbued with multitudes of personal meaning. The right words spoken in the right way can bring us love, money and respect, while the wrong words - or even the right words spoken in the wrong way- can lead a country to war. We must carefully orchestrate our speech if we want to achieve our goals and bring our dreams to fruition."
- Words Can Change Your Brain (Neuberg & Waldman, 2012)



Have you ever thought about how you talk about dementia or speak about the experiences of those who are living with it?  The Dementia Action Alliance would like to invite you to.   Living Fully With Dementia: Words Matter was released last month by the national volunteer coalition making great effort to change understanding of and attitudes about dementia in the United States.  Robin Andrews, one of the managing directors for Positive Approach™, has served as the co-chair for DAA Education and Awareness committee for the last 6 months and would encourage anyone who is living or working with dementia to download, read, and distribute this paper to friends and colleagues.  It is a beautifully written poignant work that needs to be shared with millions.
 
"If the wrong words can lead a country to conflict, consider the overwhelmingly positive effect the right words can have. The words currently used to describe people who are living with dementia, including Alzheimer's, are often not positively oriented. Instead, the words are frequently derogatory and discriminatory. This presents significant barriers to being able to live life fully with dementia and perpetuates the stigmas and misperceptions about the condition. This paper is intended to heighten understanding of the impact words and phrases can have on the well-being and lived experience of people who have dementia, and to provide preferred words/phrases, including the rationale for their use, as determined by a consensus of a number of people who are living with early-stage dementia."

 
 

HELP OTHERS LIVE WELL

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.