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Dementia and its Shadow of Grief

Last week’s column discussed the concept of loss and our response of grief to the absence of someone or something important to us ( ). There are some situations in life which cause grief which is just as real and personal as a death, yet our emotions are conflicted because the losses are not as tangible.  Feelings of uncertainty are created by a paradox of “having something at the same time that we don’t.” The pandemic has created a sense of this contradiction for many people, but it is already well-known to those people who are caring for a loved one with a form of dementia or another condition which impacts cognition.

Cognitive impairment, whether the result of dementia, stroke, or a traumatic brain injury, complicates the grief process in several ways.  Grieving begins long before a physical loss occurs.   Upon diagnosis, and sometimes even upon the suspicion of a dementia diagnosis, individuals and families may begin to experience anticipatory grief as they think about the future and recognize that it will look very different from how they had planned.  At the same time, the individual who is experiencing dementia and is part of that family’s future remains present. 

In addition to anticipating future losses, the individual and family must also grapple with the abstract path which will lead them forward.  The uncertainty of a timeline for this illness and the variety of ways in which it may or may not manifest itself results in ambiguous loss.  People are grieving a loss but they aren’t sure exactly what this loss is going to look like or how long the journey will be.

Grief related to ambiguous loss becomes even more complicated by scrambled relationships.  For example, during the early stages of a dementia, an adult child may move back and forth between the role of a child and that of a parent when a mother or father begins to require oversight and assistance with the tasks of daily life. Ambiguous loss and the resulting grief may not be recognized or understood by others who have not experienced it, or are not directly affected by the situation, making it more challenging to obtain support during this difficult time.

Caregivers may also relive the same unpleasant emotions multiple times. Feelings of loss are likely to come and go since the path of dementia is rarely straight. There may be periods when the affected individual seems “almost normal,” and a caregiver understandably can become hopeful that previous symptoms were only temporary.  When signs of dementia return, loved ones will experience grief for the same losses all over again.

Techniques are available to help caregivers cope with dementia and the grief of ambiguous loss. The University of Arizona Center on Aging published an article in 2017 by Carol O. Long, PhD, RN, FPCN, FAAN; Susy Favaro, MSW, LCSW; and Heather Mulder ( ) which outlines the following methods to assist caregivers with managing the emotional conflicts of ambiguous loss so that they may lovingly and effectively meet the needs of their loved one as well as their own needs.

  • “Call it what it is”:  Understanding the concept and learning what ambiguous loss is (emotions around an uncertain situation) and is not (a personal shortcoming), is essential to learning to live with it.
  • “Accept what is ‘Good Enough’”: Avoiding unrealistic expectations will reduce stress. It is possible to continue to enjoy activities and live life while making modifications to previous routines.
  • Engage in “Dual Thinking“’:   This practice allows two contradictory but true ideas to coexist. Your perception of a situation will change if you are able to think in terms of “both/and” instead of “either/or”.
  • “Make Peace with Ambiguity”:  Allow yourself to grieve your losses whilelearning to let go of what cannot be controlled.  It is possible to find new meaning and significance in life despite the many changes which are occurring.
  • “Revise Self-Identity”:  Consider your new role as an opportunity to grow and develop new skills and attributes.   
  • “Reduce Ambivalence”:  Recognize that mixed emotions are a normal part of caregiving and find methods to address those feelings so that they do not negatively influence your health and daily life.   
  • “Restructure Attachments”:  Relationships will change in caregiving situations.  Especially in situations involving dementia, learning to adapt to alterations in personality and methods of interaction will reduce caregiver frustration and anxiety.
  • “Build a Psychological Family”:  Maintain connections with people who are willing and able to help support you on your caregiving journey. Seek out others, such as family members, friends, a support group, or a caregiving professional, who will understand what you are experiencing and will provide information and assistance as needed.

In situations of ambiguous loss, grief is like a shadow, constantly changing in size, shape, and clarity, but always following you. This grief can be ally and help you prepare for a more definitive loss, or it can uproot you and create additional challenges in your daily life.  Acknowledging and accepting the presence of grief is a significant first step toward healing.

Karen Kaslow, RN, BSN