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The 7 Operations of Anticipatory Mourning in Alzheimer’s Family Caregivers Anticipatory mourning may be described as "the reaction to impending loss, as well as reactions and responses to losses already experienced within the … reality of the illness" 1. In other words, anticipatory mourning is stimulated as a response to the awareness of life-threatening or terminal illness in oneself or a significant other and the recognition of losses marked by time; the past, present and future 2. Those who care for Alzheimer’s Disease (AD) patients, often an elderly spouse who may have their own health problems or an adult daughter with a career and/or children3,4 , experience a wide variety of losses that give rise to mourning even though the patient is alive. In such cases there is, among other losses, a psychosocial loss, or a loss in which the individual's personality or self is perceived as dead even though the person physically remains alive 5. The phenomenon of healthy anticipatory mourning encompasses seven operations as outlined in the table below 6. At any given time an individual may be engaged in any one or a combination of these operations. The Seven Operations of Anticipatory Mourning 1. Grief and Mourning. Physical loss is the loss of something tangible such as the family home. Symbolic loss is the loss of something intangible and abstract such as the shattering of dreams of the future and retirement. Secondary loss develops as a consequence of initial loss such as having to move to new home because one cannot afford the old one due to illness. During mourning there is an “assumptive world violation” in which the beliefs, assumptions, and expectations of what the world should be are lost. Common assumptive world beliefs are that the world and life is benevolent 7 and that bad things do not happen to good people. Grief and mourning assist the mourner in recognizing that the loved one they knew is gone and then making the changes to accommodate this reality. Grief is actually the beginning of mourning; it is insufficient alone for a healthy resolution of the bereavement experience because it involves only the mourner’s reactions to the perceptions of loss and not the active work of readjustment, adaptation and integration. 2. Coping. This operation pertains to the ability to learn to withstand stressors and the ability to manage or control it in order to deal with loss. Coping implies a dynamic attempt to contend with the illness, the process of which changes as new situations arise. 3. Interaction. This stage is characterized by interaction between the patient and the caregiver/others and the awareness between the parties of the presence of the disease 8. There are a number of levels of interaction: closed awareness context, in which others know or suspect the patient’s AD, but do not tell the patient; suspicion awareness context in which others know or suspect the disease and the patient is aware that they suspect it. In mutual awareness all involved are aware of the AD but pretend they are not (denial). In an open awareness context all knowledge and information is shared between others and the patient. Within this operation are also the different types of death that are experienced by the patient 9. Social death is the symbolic death of the person in the world (i.e., their social world shrinks to immediate family and close friends). Psychological death is the death of aspects of the patient’s personality due to AD that will not be recovered. The person ceases to be aware of self: “Not only does he not know who he is – he does not know that he is 10. Finally, the biological death of the body occurs. 4. Psychosocial Reorganization. One of the relative positives of healthy anticipatory mourning is that it affords the opportunity to commence the psychosocial reorganization necessary to permit the caregiver and patient to live as well as possible for as long as possible. During this process the mourner first learns of the reality of the loved one’s AD. There is then the adjustment to the reality of AD. An adaptive readjustment then occurs with changes in roles, skills and behaviors to accommodate the illness. Psychologically, the mourner typically “rehearses” the process of illness and death, their role and how they will deal with it. 5. Planning. The fifth operation is the planning of everyday life under AD, making accommodations to protect and care for the patient and is related to attempts at coping. The focus of the planning may range from immediate future events (e.g., deciding to take the patient to the doctor’s appointment this afternoon), to later in the illness (e.g., deciding whether a placement in a nursing home is appropriate), to the post death future (e.g., weighing whether or not to consider relocating). 6. Balancing. The balancing of conflicting demands, whether from work and home, family and patient, or another dichotomy comprises the sixth operation. Part of the anticipatory mourning experience involves struggling to withstand, respond to, and create some order out of the chaos caused by opposing needs, discordant roles, incompatible obligations, and a seemingly endless list of other conflicting demands. 7. End-of-Life Facilitation. The final operation is facilitating appropriate end-of-life care for the patient, whether through an institution, hospice or other means. Beyond the primary well-being of the caregiver, of particular concern to healthcare professionals is the additional possibility of unrecognized emotional elements in the AD caregiver leading to the subsequent abuse and neglect of the AD patient. It is for both these reasons that anticipatory mourning is an important issue that clinicians must be knowledgeable about and address when working with this population and their families.

Featured Course

Anticipatory Mourning in Alzheimer’s Family Caregivers

(4 CEs) by Lee Stadtlander, Ph.D.

Health professionals have recognized the need to “nurture the nurturer.” As the number of patients with AD increases, thereby increasing the number of caregivers, this need will become even greater. The Alzheimer’s Association reported that in 2007 there were more than 5 million Americans affected with Alzheimer’s Disease (AD) and by 2050, 14 million Americans are estimated to have the disease ^{11, 12}. These statistics and predictions are particularly alarming when one considers that despite its prevalence, little is known about AD’s underlying causes and there are currently no effective treatments.

The nature of Alzheimer’s disease (AD) is such that it not only impacts the life of the AD patient, but has a dramatic influence on the patient’s family, support system, and caregivers, during the actual period of caregiving and beyond. Alzheimer’s caregivers are at risk of becoming secondary victims as they allocate increasing amounts of time, energy, and financial resources to the care of a relative with dementia (Kuhn, 1990).

Specifically, the literature has shown that many caregivers of patients with dementia are at risk for poor health outcomes, physically (i.e., reduced immune function) ¹³ and emotionally (i.e., short- and long-term depression and anxiety) ^{14, 15}.

This featured course reviews the literature on AD caregivers, with an emphasis on “anticipatory mourning.” Specifically, a thorough discussion of anticipatory mourning within family caregivers in the Alzheimer’s context is provided, including the important temporal markers in this process. The evidence identifying the major categories of individual and relational factors that impact anticipatory mourning is presented. The seven operations of healthy anticipatory mourning are fully-articulated and measures to assess this phenomenon are provided. A presentation of the common emotional reactions in anticipatory mourning is offered and the potential dangers to the Alzheimer’s patient are addressed along with associated clinical interventions.

About the Author Lee Stadtlander, PhD – Health Psychologist/Cognitive Psychologist. Faculty member at Walden University and Fielding University; President of the Montana Gerontology Society; Executive Director of Befrienders, a nonprofit organization working with the elderly. Dr. Stadlander is the recent recipient of a grant from Walden University to conduct a qualitative study on people over the age of 85 and serves as a consultant on a USDA-funded grant aimed at expanding geriatric education for paramedics in Montana.

References

1. Doka, K. J. (2000). Mourning psychosocial loss: Anticipatory mourning in Alzheimer's ALS, and irreversible coma. In T. A. Rando (Ed.), Clinical dimensions of anticipated mourning: Theory and practice in working with the dying, their loved ones, and their caregivers (pp. 477-492). Champaign, IL: Research Press.
   
2. Rando, T. A. (1986). Loss and anticipated grief. Lexington, MA: Lexington Books.
3. National Alliance for Caregiving and the American Association for Retired Persons (1997). Family caregiving in the US: Findings from a national survey. Final report. Bethesda MD: National Alliance for Caregiving.
4. American Psychological Association (1997). What practitioners should know about working with older adults. DC: Author
5. Doka, K. J. & Aber, R. (1989). Psychosocial loss and grief. In K. J. Doka (Ed.), Disenfranchised grief: Recognizing hidden sorrow. Lexington, MA: Lexington Books.
6. Rando, T.A. (2000). Anticipatory morning: What is it and why do we need to study it? In T. A. Rando (Ed.), Clinical dimensions of anticipated mourning: Theory and practice in working with the dying, their loved ones, and their caregivers (pp. 1-16). Champaign, IL: Research Press.
7. Janoff-Bulman, R. (1992). Shattered assumptions: Towards a new psychology of trauma. NY: The Free Press.
8. Glaser, B. F. & Strauss, A. L. (1965). Temporal aspects of dying as a non-scheduled status passage. American Journal of Sociology, 71(1), 48-59.
9. Sudnow, D. (1967). Passing on: The social organization of dying. Engelwood Cliffs, NJ: Prentice Hall.
10. Kalish, R.A. (1966). A continuum of subjectively perceived death. The Gerontologist, 6, 73-76.
11. Evans, D.A. et al. (1990). Estimated prevalence of Alzheimer’s disease in the United States. Milbank Memorial Fund Quarterly, 68, 267-289.
12. AARP & Administration on Aging (2001). A profile of older Americans 2001. Washington DC: AARP.
13. Esterling, B., Kiecolt-Glaser, J. K., Bodnar, J. C., & Glaser, R. (1994). Chronic stress, social support, and persistent alterations in the natural killer cell response to cytokines in older adults. Health Psychology, 13, 291-298.
14. Schulz, R., Mendelsohn, A.B., Haley, W.E., Mahoney, D., Allen, R.S., Zhang, S., Thompson, L., & Belle, S.H. (2003). Resources for enhancing Alzheimer’s caregiver health investigator: End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936-1942.
15. Bodnar, J. C. & Kiecolt-Glaser, J. K. (1994). Caregiver depression after bereavement: Chronic stress isn't over when it's over. Psychology and Aging, 9, 372-380.

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