By Sara Sanders, PhD, MSW
Studies have shown that caregivers of individuals with Alzheimer’s disease are at an increased risk of mental and physical problems as a result of the strain that accompanies this role. Researchers have focused on the stress, sense of burden, and depression that caregivers experience. Little reference has been made to the feelings of grief and loss reported by caregivers.
Q. What makes Alzheimer’s caregivers sense of loss different from others? What is ambiguous grief?
Unlike the losses that caregivers of individuals with different illnesses encounter, caregivers of individuals with Alzheimer’s disease experience losses over a longer duration of time (for some 20 years) and many of these losses are not socially recognized or addressed causing a situation of disenfranchised grief.
Caregivers of individuals with Alzheimer’s disease and related dementia experience loss starting with the first symptom of the disease. Losses in the areas of communication, socialization, shared memories and the future, intimacy, roles and relationships, and a sense of normalcy have been identified in the literature as most commonly experienced by caregivers. These losses stem from the unrelenting cognitive changes that are occurring in the person with dementia.
Also, many caregivers are so focused on the tasks of caregiving (i.e. addressing activities of daily living) that they do not recognize these losses in their own life and the impact that unaddressed grief may be having on them.
Pauline Boss coined the term ‘ambiguous loss’ to describe losses that possess some degree of uncertainty and force people into questioning their status with the lost object. For caregivers of individuals with dementia, they are faced with the fact that the individual with dementia is, as Boss stated, physically present, but psychologically absent. Thus, the familiarity with the diagnosed individual and what was once normal or standard within the relationship is suddenly changed. Therefore, caregivers may say, “This is not my husband even though he looks like my husband” or “My mother would never act like this”, which all represent the ambiguity that has not engulfed their relationship with the diagnosed individual.
Q. Does the caregiver experience a sense of loss when the person they are caring for is first diagnosed with Alzheimer’s disease and how does this sense of loss change throughout the disease?
Research has examined how grief changes throughout the course of the disease. Ponder and Pomeroy (1996) were the first to examine differences in grief at different stages of the disease. They suggested that grief is high following the diagnosis and then declines during the second through fourth years of the disease. Following the fourth year, the grief of caregivers tends to increase.
Meuser and Marwit (2001) were next to examine differences in grief at different stages of the disease. They found that grief, particularly in spouses was highest during the final stages of the disease. Similar findings were reported by Ott, Sanders, and Kelber (2007) who found that as the severity of the disease increased, the grief of caregivers also became more severe.
Every caregiver is different and will respond to the losses associated with the disease in unique ways. However, it is important to recognize that many caregivers do not associate what they are experiencing as loss; instead, they lump it into the broad categories of burden, depression, and stress. It has only been in the past 10 years that people have started distinguishing the experience of grief from these others experiences (see Meuser, Marwit, & Sanders, 2004).
Q. What is the difference between depression and grief?
Many people confuse grief and depression because the symptoms can be quite similar. However, there are distinctions that are important to emphasize.
First, grief has a temporary impact on the individual, while depression can lost longer periods of time. This is not to diminish the impact of grief and the fact that individuals are forever changed as a result of the loss, but usually a grieving person is able to resume qualities of their life pre-loss overtime, while individuals with depression may have their overall level of functioning impacted to a greater extent for a longer period of time.
Second, grieving individuals are able to attribute their feelings of sadness and hopelessness to the loss, while individuals who are experiencing depression may not be able to identify the root causes of their feelings and mental health.
Third, grieving individuals are still able to enjoy and find satisfaction in certain aspects of their lives. While finding these activities may be challenging, once they are identified they are found to be helpful. Individuals who are depression may experience difficulty finding joy and satisfaction in any aspect of their lives.
Finally, an individual with depression may experience significant relief from pharmacological treatments. While these treatments may temporarily help a person with grief, they will not take away feelings of grief. For some individuals it actually prevents the grief work that is needed to occur, only prolonging grief reactions.