Grief and Dementia

Grief is a part of everyday life, especially for those affected by chronic dementia. Grief can be defined as the personal experience of a loss. By this definition every time a person forgets a favorite pen or discovers that she or he is no longer able to accomplish a task of any sort, human beings grieve a loss. For the average person, losses are categorized on a continuum from very minor to major. This rational process takes place every day when a pen is missing and the person simply grabs another. However, a loss like the death of a loved one is a significant event. Persons with dementia exhibit a loss of memory, but what many observers do not understand is that they also lose their capacity for rational thought. Thus, when a person has dementia this continuum of rational responses to the various types of grief situations becomes unclear both to the person and to those who care for that person.

Everyone who knows and cares about the patient who is confronted with a terminal diagnosis like Alzheimer's disease is impacted. The patient diagnosed with Alzheimer's disease in particular will experience a slow decline in mental and physical capacity that can continue for many years. Sometimes referred to as “the long good-bye,” Alzheimer's disease, the most common form of chronic dementia, is the source of tremendous grief and sorrow, but it is not necessarily a shared grief between the patient and his or her loved ones. Traditional wisdom in the field suggests that family members primarily experience anticipatory grief, but it is not clear as to how, or even whether, the patient is able to grieve a significant loss. Recent research, however, suggests that a more complicated picture exists and needs to be included in the understanding of those in clinical practice.

Grief and Families

References to the experience of grief as it relates to the persons and families impacted by dementia begin in the early 1980s. However, research into grief reactions of families did not begin until 15 years later, and research into grief responses of persons who have dementia has only just begun. Early references to the family experience of grief as related to a person with dementia promoted the assumption that dementia, like other chronic illnesses, would invoke anticipatory grief (i.e., grief that occurs prior to a loss). The logic of understanding the grief of a family in this way stems from the theory that dementia is a chronic illness, much like cancer or a stroke. More recently, however, Alzheimer's disease has been defined as a terminal illness; this definition challenges the validity of employing the classical perspective of anticipatory grief for family members.

Anticipatory grief parallels conventional grief in that both reflect the emotional reactions of a person to a loss. Whether the classic stages of grief as articulated by Elisabeth Kübler-Ross in her 1969 publication On Death and Dying or the more recent tasks of mourning that J. W. Worden has employed, in both instances an event is generally the starting place for the grief reaction. When dementia is involved, the starting point to begin the process of grief is less clear. Paradoxically, the end point is also different. While in classical grief, the grief process can go on indefinitely, for the family with a senior who has dementia, the end point of anticipatory grief will be the death of the loved one. At this point the family is faced with the question as to whether or not the death signals the start of a second grief process in a more classical format. In short the struggle for families is to determine when their loved one actually dies. Is the person gone when they no longer recognize anyone in the family or is it when the body dies?

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