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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