BetterConduct

Many primary caregivers state that they are stressed and cannot seem to relax due to anxiety about their situation, their capabilities, and how overwhelmed they are caring for another.  In a 2017 AARP article, Stanford neurobiologist Robert Sapolsky discussed how stress changes our responses, especially when we feel we do not have control over what is happening and cannot predict the outcome (Redford, 2017).

When asked how chronic stress makes us behave badly, Dr. Sapolsky answered:

 

If you’re chronically stressed, it becomes easier for you to learn to be afraid.  You’re also not going to be at your    sharpest cognitively.  But probably the most recent finding is that when we’re stressed, we become less empathic, less compassionate, and less capable of taking someone else’s perspective. (p. 29)

 

Maybe this explains why there can be bad behavior on both sides of the aisle when spouses are caregivers.  Both can be stressed over their separate predicaments.  The caregiving spouse may be fearful of the financial ramifications and the day-to-day implications of a routine found to be burdensome and the uncertainty of the future with—and eventually without – his/her spouse.  The patient can be stressed, too.  Who are all these people? Why are they having me do things I am not interested in doing?  Fear, strong will and disapproval can be shown through agitation and aggression.  And why is the spouse treating me so differently?  It is not difficult to understand how anger could be inherent in these circumstances. 

 

In fact, anger is a common emotion in dementia. According to Matthew Hutson in the January/February 2015 issue of Psychology Today magazine,

Anger results when we feel undervalued.  It prompts us to reassert the importance of our welfare by threatening to harm others or withhold benefits if others don’t recalibrate our worth.  This explanation clarifies why you might get angry when people needlessly try to be helpful; they haven’t shown malicious intent, but they’ve underestimated you.

 

Indeed, anger is a common reaction in dementia patients when abilities or capabilities are under realized.  My father frequently comments, “When are we going to get rid of all these (caregivers)?”  In the evening, when tired or not easily able to concentrate, he may become almost combative toward those trying to help him dress for bed or sit correctly in his chair.  In his career, he was used to being in charge, hiring, firing, evaluating, and assigning personnel, and making competent decisions in all aspects of his personal and professional life.  Now, he is told what to do, when to do it, and someone else decides how to do it.  He is left with the ‘why’; and even iterates that he would not mind sleeping in his clothes rather than go through the evening pajama routine.  Hutson (2015) adds:

 

Anger has reputational value, too; it signals to others that you have the strength of resources and resolve. In fact, those who display anger are seen as higher in status, more competent, and more credible.

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Perhaps dad felt he could do more for himself.

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Regret and Disappointment

 

“Regret arises when an outcome is worse than if we’d acted differently, implicating personal responsibility; disappointment arises when an outcome is worse than we expected it to be, highlighting powerlessness” (Hutson, 2015). Perhaps this is part of the association between dementia and depression:  We are powerless to change our situation in dementia; we are disappointed that we cannot remember/process/participate/engage, etc.   Again, there is another side to this emotional coin. 

“Although unpleasant, disappointment has its uses—putting us off an unachievable goal, for instance.  It also attracts sympathy and support.  As a result, others become more helpful toward us.”

 

“Depression—a state of prolonged sadness and hopelessness—is now widely seen as a disorder.  But it can be a healthy response to difficult life situations.  It may have evolved as a way for people to remove themselves from distracting activities (by eliminating their interest in them) and to ruminate on whatever complex problem is besetting them” (Hutson, 2015). 

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Depression is a prevalent symptom – whether side effect, pre-existing, or concurrent – in dementia.  This may be why apathy is so difficult to separate from depression. 

 

How do we address these issues in caregivers?

 

Dr. Sapolsky stated the most powerful variable pertaining to managing stress is social support. 

A support group can be a good release of the gamut of emotions that spiral in and out of control when a loved one becomes a care partner.  The balance of power and control may shift dramatically in a relationship.  A support group, hopefully chaired by a social worker or other mental health professional, can be a revelation to the caregiver. There are hurdles to discuss, strategies that work or are ineffective, even bizarre behaviors sometimes.  There are medications, medical issues that disrupt progress or cause regression, etc.  A support group can help release some of the stress the care provider experiences and provide an escape from the setting in which they occur.  It can be beneficial to realize others may be experiencing similar problems in the caregiving process.  A participant can also help others with advice, encouragement, and empathy. 

 

Various research shows the best support groups are individualized and have a limited number of participants.  Stress reduction techniques should be taught, encouraged, and practiced.  Strategies to understand communication styles and how a change in wording, tone, presentation, timing, etc. can have profound effects on the way a request is received by the IWD.   Coping and behavior management strategies are also effective, as were groups that met a minimum of six times and required active participation (Pinquart and Sorensen, 2006).  Participation in a program with these elements has been shown to decrease caregiver depression and anxiety long after the sessions have ended (two years or more) and increase the carer’s quality of life (Livingston et al, 2014). One support group program curriculum with these elements is Coping with Caregiving; in the UK, this program was adapted to a shortened version called START (STrAtegies for RelaTives). (Livingston et al, 2014; Coon et al, 2003). 

 

Additional benefits of a support group can be the realization that others have struggles not unlike our own.  Members can support and encourage other members.  It can be a pivotal point for changing perspective regarding what is considered an obstacle or problem.  What caregivers and family members see as a problem may not be a problem at all for the dementia client.  For example, wandering outside the designated area is not an issue for the resident unless there are safety issues (which the resident likely does not consider an issue.)   It becomes our responsibility to monitor the individual (utilizing watch GPS, cameras, etc.).  We need to use the technology we have at our disposal.  Another example might be shaving.  My father does not see it as a necessity to shave but my mother does.  Dad has always hated shaving; now he dislikes it even more since he must allow others to shave him.  We tried electric razors of various kinds; dad can shave himself somewhat but tends to ignore one side of his face completely, most likely due to stroke and/or a perceptual issue.  We need to decide if our expectations fit the practicality of getting the task done and coincide with the wishes of the client.  Many times, the client is not the one with unrealistic expectations or an inability to communicate effectively. 

 

Sources:

Coon DW, Thompson L, Steffen A, Sorocco K, Gallagher-Thompson D.  Anger and depression management:  psychoeducational skill training interventions for women caregivers of a relative with dementia.  Gerontologist 2003;43:678-89.

Hutson, Matthew.  Beyond happiness:  The upside of feeling down. Psychology Today, 2015; 48(1):44-82

 

Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, Romeo R, King D, Livingston D, Lewis-Holmes E, Mummery C, Walker Z, Hoe J, Cooper C.  START (STrAtegies for RelaTives) study: a pragmatic randomized controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy program in promoting the mental health of carers in people with dementia.  Health Technology Assessment, 2014;18(61)1-63.

 

Pinquart M, Sorensen S.  Helping caregivers of persons with dementia:  which interventions work and how large are their effects?  Int Psychogeriart ; 2006;18:577-95.

 

Redford, D.G.  2017 August/September. When Your Brain Has a Mind of Its Own.  AARP Bulletin, August/Sept 2017, p. 28-29.