Wednesday, January 20, 2016

Why I am Here: The Social Model of Dementia Care

I prefer to keep my articles focused away from me and to place a spotlight on persons living with dementia (PLwD) and their care partners.  At the same time, I think a self-indulgent post may be in order to tell the reader why I have dedicated my life to helping others find "Peace with Dementia" as I like to call it. This is more of an opinion article; while the sample interventions are based in science, I will cite very few sources.

If you visit my website, you will see a dedication to my Grandfather Milton Ragas who had some type of dementia in his last years and my Mom, Yvonne who advocated for him and coordinated his care.

While this was a catalyst for my calling, it does not explain my philosophy of Peace with Dementia.

I started my graduate studies in Gerontology under the direction of Christopher Johnson, PhD who enlightened me to the social model of dementia care.  Dr. Johnson is doing amazing things in a new dementia program at Texas State University. In short, the social model focuses on the person with dementia as a whole person, still capable of joy, fear, pain, delight, and other feelings.  The social model does not contradict, but does differ from the biomedical model of dementia care that focuses on medical treatment and drugs.  Ideally, the two models work together, caring for the body (biomedical) and the mind and spirit (social).  The current system is built upon a biomedical model, leaving a need for some balance and an enormous potential for increased healing through the social model.

Examples of the social model, like non-pharmacological interventions, take time, effort, patience, and empathy.  Examples of these interventions are:

  • Studying a person's life history and personality to discover meaningful activities to delight the PLwD;
  • Understanding that "problem behaviors" are typically the PLwD communicating a need, not trying to annoy his care partners;
  • Discovering the root cause of these behaviors, which could be physical (untreated pain or discomfort) or emotional (fear and confusion where their parents are; a veteran dealing with combat trauma); 
  • Using personalized music (Gerdner) to sooth patients who are agitated or combative;
  • Utilizing meaningful activities to engage PLwD who are an elopement risk (wandering risk);
  • Utilizing Validation Therapy (Feil) with much older PLwD trying to resolve a traumatic past;
  • Care partner support groups and groups for persons with early onset dementia;
  • and more...
While the above sample do not include pharmaceuticals, they do not necessarily exclude responsible use of drugs. What they always do include is what I mentioned above:  time, effort, patience, and empathy.

The social model fascinates me and it is my calling to educate and collaborate with all care partners who are willing to make the effort: family, friends, professionals, and staff.  In this journey, I appreciate and give credit to those researchers who came before me to discover these methods and credit to practitioners and family members who use these interventions everyday, even though it means more effort. They "get it." I am very blessed to be able to email back and forth with some of these leading researchers and teachers.

The social model means some potential frustration and much trial & error for care partners. It means learning from each person with dementia, the expert.  When one method does not work, we try another. Time, effort, patience, and empathy. The upshot is that when care partners are successful in these methods, the satisfaction and accomplishment is incredible.  Another benefit is saving time.  If you can use non-drug methods to sooth a combative PLwD, you are looking at lower risk of injury (which is amazing alone), as well as not having to document an incident. Stated another way, you are going to spend time somewhere and it may as well be in prevention of combative behaviors rather than the aftermath.

With Care Partner Mentoring, LLC,  I see my mission as four-fold:
  1. Listening to the care partner; 
  2. Educating & training with the care partner; 
  3. Persuading the care partner to take action;
  4. Encouraging the care partner when times are tough.
Persons with Dementia are whole persons, not a 'shell of a person' as we are conditioned to believe.  They were care-free children once, most raised families, many founded businesses and served others, and were community leaders. They deserve our love and attention.  As a care partner, you will have good days and bad days like they do.  Perhaps if you end up in the same position, someone will care for you this way.  If you agree with my perspective, we are on the same team and I hope you stay connected with me.  If you do not share my perspective, I hope you read more to consider these ideas.  

We need a very large team.

Thank you for reading my story and hope you will subscribe for updates and like my FB page for other updates.

In Peace,

Action Items:
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Matt Estrade, MA, MBA,  is Gerontologist and Founder/Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.


Monday, January 4, 2016

Fluctuating Awareness in Dementia and Why It Matters to Care Partners

Persons Living with dementia (PLwD), with their fluctuating memory, can confuse and frustrate even the most patient care partner. One day their loved one with dementia correctly recognizes them as their daughter. Days (or even moments) later, they think their daughter is their (now 86 year old) sister, or deceased mother. It can be heart breaking as when my grandfather did not recognize my mother Yvonne when he had dementia in the late 1990’s. Some days he knew her and other days did not. I can only imagine how frustrating this was for my Mom.  

If we as care partners experience this roller coaster, it can be easy to think that our loved one with dementia is doing it on purpose or can snap out of it if we just correct them.

In the April/March 2000 issue of the American Journal of Alzheimer's Disease, my mentor Dr. Chris Johnson and his wife Dr. Roxann Johnson published an important way of looking at why persons with a dementia do this. In their article “Alzheimer's Disease as a Trip Back in Time, ” Drs. Johnson and Johnson discuss that a person with dementia can turn back the clock in their mind, with their state of memory regressing to that of their 60’s, 50’s, 40’s and so on until in their mind they are children.  What makes the Johnsons' model unique is that the regression of memory is not a straight line moving backwards in time only, but contains loops to mean your loved one with dementia can travel back and forth in time.  

As mentioned in their paper, Drs. Johnson and Johnson are building upon the previous work of Paiget, Thornbury, Reisberg, and Kuhn.

Why is this model or perspective matter? 
  • It is significant because if care partners understand that their loved one is on a trip back in time, they may better be able to join them on their journey.  It is not realistic or practical to try and get them to leave their journey and meet you. This correcting can bring about increased frustration, agitation, and further confusion. Their brain is impacted in a way that not even our best lecturing will overcome. Perhaps correcting makes us feel better because we do not know what else to do.
  • The model also can help care partners understand that there can be variations in their loved one's perspective of time. Perhaps, this understanding can lead to more flexibility on part of the care partner and remind them that the "only constant is change."
  • As stated in the article, this model may "caution against overestimating or underestimating the capabilities" of PLwD. It's very easy to assume that they can do something correctly because they did it correctly yesterday. This assuming may now be overestimating their abilities today. The same can be said if we assume that the PLwD cannot do something today because yesterday they could not. While it's difficult to truly understand unless you are a care partner, it is probably easy for the reader to sense that the constant changing of abilities and unpredictability can be frustrating.
So how do you join them on their journey when they are not in the present day? 
Here are a few quick tips to get you started. Look for more details posts in the future.
  • Avoid contradicting or correcting them.
  • Find ways to validate the PLwD and set them up for succeeding in what they do.
  • Ask open-ended questions about the topic that they are talking about - let them do most of the talking.
  • Jot down their phrases and track their time travel over a week or more. When you are not frustrated, review and think about ways you could have respond so you are prepared for next time.
  • Be ready for some tough requests or questions, such as “Where is my mother?” when she died 20 years ago or “I want to go home,” when they are home. In short, your loved one is expressing a need to feel the security of a parent like they did when they were young.  A good first effort is to get them to talk about their mother or home (whichever home they mean).
Action Items:
Matt Estrade, MA, MBA is the Founder and Chief Mentor at Care Partner Mentoring, LLC in Covington/New Orleans, LA, USA. A more extensive biography can be found here.
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