BetterConduct

Grief is defined as “a normal response to a catastrophic loss, most commonly the loss of a loved one” according to Robert G. Robinson, MD, a professor emeritus of the University of Iowa (Colino, 2019). Individual responses to grief can vary; some experience waves of sadness at the thought of their loved one while others have difficulty sleeping, eating, and lose interest in activities.  Dr. Robinson states grief is also about growth and making choices in a new reality. 

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Anticipatory grief is the process of grieving prior to the death of a loved one.  Dementia grief, as defined by Chueng et al (2018), is a specific type of anticipatory grief that is “in response to compounded serial losses and marked by the ambiguity of the experience of losses in dementia”.  Dementia grief is different from anticipatory grief due to disruptions in communication, an inability to resolve conflict due to cognitive impairment of the patient, and the repetitious process of compounded loss, ambiguity, and adaptation required to changing situations (Blandin and Pepin, 2017).  The processes involved in dementia grief are present throughout the dementia caregiving journey.  Each of these states or processes are outlined below. They define many aspects of what makes the dementia caregiving experience so difficult.  These stages occur and recur in differing order and intensity throughout the dementia journey. 

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In the dementia grief research of Blandin and Pepin (2017), one of the three states of dementia grief is separation.  A series of losses increase in magnitude as the disease progresses.  These separations or losses are in the areas of memory, communication, health, withdrawal from activities, decline in personal care, etc. in the IWD.  Both the IWD and the caregiver may also experience losses in personal freedom, companionship, intimacy, opportunities (social, occupational, recreational), health, and hope (Chueng et al, 2018).  The losses occur in large doses, without warning, and at unpredictable times.  Each loss further separates us from the person and life one has lived in the past. 

 

Another state of dementia grief is called liminality, or ambiguous loss.  The authors explain the root of the word liminality from the Latin word limen, which means threshold.  The past is not yet past, and the future is not here, either.  It is a state of limbo.  The losses experienced fluctuate and are unstable.  There is loss of the person the caregiver knew.  There are changes in behavior, personality, and abilities. The patient is not psychologically available and is seen as receding into themselves.  Expectations are lost and there is no hope for the future.  All is unknown and the repercussions of such changes cannot be anticipated or prepared for. 

 

The third state in dementia grief according to the Cheung study is reemergence.  This state involves adapting to the new circumstances in care and acceptance of these changes.  These adaptations are in response to each loss or separation from how things used to be.  Adaptation requires taking over responsibilities for the loved one with dementia as they become less able to care for themselves.   These adaptations are made throughout dementia’s progression due to inability to drive, need for supervision or special equipment, and changes in mobility and health as well as competence.

 

These three states – separation, liminality, and adaptation – epitomize the daily characteristics of dementia caregiving.  There are continual unannounced losses affecting the relationship and the IWD.  The unknowns and uncertainties multiply, and issues arise without warning or precedence.  As health and abilities decline, the role of the caregiver must morph to address changing needs and confront obstacles to quality of life for all involved.  No wonder the caregiving process is so incredibly stressful.   It is the author’s thought that an awareness of these three states in the process of dementia anticipatory grief can provide an expectational framework for dispelling some of the inevitable confusion regarding the inconsistencies and flux inherent in the dementia journey. 

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Grief can also get complicated.  Complicated grief is grieving post death that involves a sense of anger and bitterness, disbelief about the death, preoccupation of thoughts about the lost loved one including distressing ones about their death itself, and recurrent strong emotions of yearning or longing for the loved one.  It is estimated that about 20% of caregivers who have experienced the death of their care recipient experience depression and complicated grief post death (Schulz et al, 2005). It has long been established that those with depressive symptoms prior to the death of their loved one have a higher incidence of complicated, or nonbeneficial, grief.   In the Chueng et al (2018) study, it was also found that those caring for more cognitively impaired patients (FAST scale 6-7) have high levels of complicated grief, as do those that reported positive features of the caregiving experience.  Why would this latter factor be so?  Although results are inconclusive, it is hypothesized that some caregivers may derive purpose from the caregiving experience or may have a greater sense of attachment or dependency prior to the loss.  Others suggest caregivers that accentuate positive aspects are more depleted and vulnerable post death.  Perhaps the carer’s sense of purpose is lost as their sense of self is vested in caregiving.  It is known that caregivers of mildly impaired patients reported less relief post death.  But sense of relief and complicated grief do not typically coincide.  More research is certainly warranted into the dementia grief process and contributing factors.

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There are mixed results in studies examining the subjective burden of caregiving and complicated grief.  The Schulz et al research (2005) tested 217 caregivers that had experienced the loss of a loved one during the course of the study.  Losses were measured by the 18 Likert scale items on the Marwit-Meuser Grief Inventory in the three areas of Personal Sacrifice Burden (individual losses due to caregiving), Heartfelt Sadness and Longing (intrapersonal reactions to lost relationships) and Worry & Felt Isolation (feeling of losing connections with others.)  Those suffering complicated grief reported higher levels of burden, cared for younger patients, had less education, lower income, and were more likely to use antidepressants post-loss and anti-anxiety medications pre-loss.  It was also found that marriage to the person that died was also a factor increasing the likelihood of complicated grief.  In fact, spousal caregivers reported a greater burden, feeling disconnected from family and friends, and loss of the ability to communicate with their mate.  Adult caregiver children of dementia patients did not experience grief levels as high as spousal caregivers.  Complicated grief increased during the first 15 weeks post death and then decreased in the following 6 – 12 months.

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What can be done to decrease the incidence of complicated grief?  Caregivers with palliative or hospice support services have a significant advantage to experience beneficial grief.  Reasons aren’t entirely clear but may involve the fact that they are better able to cope if they are aware of the eventual outcome, have time to prepare for death and life afterward, are relieved from some of the burdens of caregiving, and/or may feel relief over the end of suffering for their loved one.  Other factors found to reduce the incidence of complicated grief include treating caregiver depression prior to the patient’s death and providing both supportive psychosocial and skills training intervention (Schulz et al, 2006).  Pre-death interventions for spouses that “enhance empowerment, coping skills, and resilience” were most effective in one study (MacCourt et al, 2017 as quoted in Chueng et al, 2018). Exactly what should be taught and/or discussed during the support and training is not well-defined, but most studies indicate the intervention must be individualized on a per case basis to show benefit. 

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Sources:

Cheung D, Ho K, Cheung T, Lam S, Tse M.  Anticipatory grief of spousal and adult children caregivers of people with dementia.  BMC Palliative Care.  2018;17(124):1-10.

 

Colino S.  The long reach of grief.  Brain and Life, 2019; April/May:19-27.

 

MacCourt P, McLennan M, Somers S, Krawczyk M.  Effectiveness of a grief intervention for caregivers of people with dementia.  Omega (Westport).  2017;75(3):230-47 as quoted from Chueng et al, 2018. 

 

Schulz R, Boerner K, Shear K, Zhang S, Gitlan L.  Predictors of complicated grief among dementia caregivers:  A prospective study of bereavement.  Am J Geriatr Psychiatry, 2006;14(8):650-658.