BetterConduct

The dimensions of the dementia thought process are not understood.   The plaques and tangles and chemical changes in the brain can be documented at autopsy, but it is unknown how dementia affects the process of thinking during the disease progression.  The various types of dementia all stretch the boundaries of the thinking process and, as a result, the reality of the client.  These changes culminate in the client experiencing their own dementia truth—which in turn affects their world through thoughts and reasons and ensuing behaviors.  It is our responsibility as caregivers, parents, loved ones, and clinicians to respond to these changes in a manner that provides assurance, acceptance, structure, and guidance.

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In Ireland, the Assisted Decision-Making Capacity Act was passed in 2015 to put into law that every person has the ability to make decisions about their own property and personal affairs free of intervention unless they are show not to have the capacity to do so.  (Flynn, 2019). According to the Act, capacity is not measured by a test that encompasses all decisions to be made.  Instead, it is determined for a specific decision at the time it is needed to be made.  The capacity to make the decision is based on the person’s ability to understand options, consider and weigh them, and communicate those wishes.  The cognitive variability of chronic disease and other illnesses might make one able to make decisions one day but not the next.  If capacity is found to be lacking, a gradual system of supports or interveners is employed to assist the person in making the decision.  The guiding principle is that the least restrictive amount of intervention required will be employed due to the person’s right to “bodily integrity, privacy, autonomy” as indicated in the United Nations Convention on the Rights of Persons with Disabilities. 

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In a recent Smithsonian magazine article, a reference was made to the origins of the infamous four freedoms paintings by Norman Rockwall (Tucker, 2018). In an address to Congress in 1941 regarding U.S. involvement in World War II, President Roosevelt stated there were four values at stake:  Freedom of Speech, Freedom of Worship, Freedom from Want, and Freedom from Fear.  Rockwell’s paintings depicted each of these values in his own way, and these interpretations were based on the culture of the time as well as the personal perceptions and experiences of the artist.  In a similar way, the IWD interprets his environment based on his/her memories, experiences, emotions, and thoughts.  We, as caregivers and loved ones, must try to interpret their responses and behaviors in the context of their personal past, conceptions of the current age and environment, and relative position in the disease continuum. 

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Roosevelt’s comment about the four freedoms can also be seen as the guidepost for dementia care.  When we provide the very best possible care for dementia clients, we allow freedom of speech, even when our client may not allow us to forget that the executive functioning of the frontal lobe can be impacted by the lack of social mores or buffers on what is said.  Even without the ability to speak, relationships respond to a smile, memory, touch, familiar face, compliment, and most importantly, presence.  Silent communication exists through body language, eyes, and facial expressions.  We must speak directly to the client and listen attentively. 

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We also allow Freedom of Worship and do not assume that the spirituality of the client is missing in their current mindset.  We should continue to allow an expression of spirituality and community to the greatest extent possible.   As spirituality is deeply rooted in the emotional components of the brain, it can be preserved throughout the dementia cycle.  Many dementia clients say they feel like a burden to others.  Clergy can help address these concerns and the accompanying depression that tends to coincide with dementia.

Freedom from Fear and Want are the two basic mainstays of dementia care.  We attempt to reassure the anxious client by providing structure and routine, communicating in a non-threatening manner, even addressing hallucinations and delusions in a way that does not discount the client’s perceptions.  We eliminate safety issues and take fall precautions.  We provide assistive devices and grab bars, walkers, and other appliances to help enhance their abilities, not target their deficits.  Freedom from Want involves active participation to anticipate preferences of the client regarding activities, meals and beverages, and allow naps and breaks if needed.  It also encompasses participation in meaningful and enjoyable activities such as exercise, religious services, and community events to defray the declining effects of isolation.  A client may not ask outright for what they want, so we use behavioral clues and gestures, posture, and facial expression to interpret what they might desire.   This can be one of the most difficult aspects of caregiving, and yet result in the most rewarding freedom of all—to be valued and understood. 

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Sources:

Flynn A.  We must help vulnerable people to make the best decisions.  The Irish Times, January 4, 2013.  Retrieved February 16, 2019 from https://www.irishtimes.com/opinion.

 

Tucker A.  A 21st century reimagining of Norman Rockwell’s “Four Freedoms”.  Smithsonian Magazine.  March 2018.