Caregiving (Continued) and Dying and Death

1. Caregiving (Continued) and Dying and Death November 28, 2007

2. Final Exam • December 10th, 7-10 pm • Albert Kruger Hall, Woodsworth College • On St. George St., just south of Bloor

3. Tonight’s Lecture • More about caregiving including a video • How do people approach death? • Are there factors helping people to cope with their own mortality? • How do people deal with grief?

4. Stress Process in Dementia Caregivers • Looked at depression, anxiety, perceived physical health, objective burden. • Stress-process model fit almost all subgroups in sample. However, wives, Cuban Americans, and high-income caregivers were the ones fitting model least well: Additional variables needed. • Nevertheless, family functioning did partially mediate distress in caregiver in all groups.

5. What Could Be Done? • Modifying family interactions to support protection of caregiver. • Promote cohesion. • Involvement of care recipient in family activities. • Resolution of disagreements. • Expression of affection and levity.

6. Caregiving Can Have Benefits Too (Boerner et al., 2004) • Benefits: Companionship, fulfillment, enjoyment, satisfaction of meeting obligation, and providing good quality of life for loved one. • 73% of elderly caregivers reported feeling a positive aspect to their caregiving (Cohen et al., 2002) • Quality of relationship is linked to satisfaction in caregiving. • The most benefits from caregiving: More postloss grief and depression.

7. Impact of the Caregiver’s Cognitive Status • Miller et al. (2005) looked at the role of caregiver cognition (mean age= 63 years old). • 39% in their sample showed some impairment, which was most often dementia-like symptoms. • Impact: More frequently treating recipients in verbally abusive and threatening ways. • Language comprehension and memory might be mechanism to explain these behaviours.

8. Negative Reactions to Being Helped • Newsom (1999): Not only caregivers can feel stressed, so can the recipients of the care. • Emotional strain and/or unpleasant feelings, negative feelings towards the caregiving, and dissatisfaction with help received. • Negative caregiver behaviours were found to be rare but highly predictive of negative reaction to caregiving.

10. Negative Reactions To Being Helped • Caregivers reports of critical attitudes towards spouse illness: Predictive of level of depression in recipient of care. • Newsom & Schulz (1998): 1-year longitudinal study showed that negative reaction to caregiving could cause depression, and effects were long-lasting. • Threat-to-self-esteem model (Fisher et al., 1982): Does not explain why people with high self-esteem react more negatively to caregiving.

11. Negative Reactions To Being Helped • Social-Support Negative-Interaction Framework (Barrera & Baca, 1990) • Variables can have • A direct impact on perception of help that will influence social interactions (e.g., extroverts will rate social interactions more positively than introverts.) • A moderator effect on the relationship between perception and social interaction. (e.g.: Fewer negative reaction in someone with high self-esteem but low fatalism)

13. Video: Labour of Love: 5 Stories of Caregiving • Call number: AV 4679 • What are the different types of caregiving relationship shown in this video? • What are the challenges (physically and mentally) of caregiving? • What are the positive aspects of caregiving? • What are the main complaints voiced by caregivers?

14. What is Death? • Clinical death • Lack of heart beat and respiration • Has been used for centuries as the criteria for death • Brain death • Includes eight specific criteria, all of which must be met • No spontaneous responses to any stimuli • No spontaneous respiration for at least 1 hour • Lack of responsiveness to even the most painful stimuli • No postural activity, swallowing, yawning, or vocalizing

15. Medical Definitions of Death • Brain death • No eye movements, blinking, or pupil responsiveness • No motor reflexes • A flat EEG for at least 10 minutes • No change in any of these when tested again 24 hours later • The most widely used definition in industrialized countries. • Persistent vegetative state • When brain-stem functioning continues after cortical functioning stops.

16. How Do People Approach Death? • Young adults report a sense of being cheated by death. • Middle-aged adults begin to confront their own mortality and undergo a change in their sense of time lived and time until death. • Older adults are more accepting of death.

17. Dealing With One’s Own Death • Kübler-Ross’s theory includes five stages: • Denial • Anger • Bargaining • Depression • Acceptance • The first reaction is likely to be shock and disbelief. • Denial is a normal part of getting ready to die. • At some point people express anger as hostility, resentment, frustration, and envy.

18. Kübler-Ross’s model was driven by psychodynamic theories. • “No matter the stage of illness or coping mechanisms used, all our patients maintained some form of hope until the last moment. Those patients who were told of their fatal diagnosis without a chance, without a sense of hope, reacted the worst and never quite reconciled themselves with the person who presented the news to them in this cruel manner.” On Death and Dying, p.264

19. Dealing With One’s Own Death • Bargaining: People look for a way out or a person sets a timetable. • Depression: Common when one can no longer deny the illness/inevitability of death. • Acceptance: Often seems detached from the world and at peace. • Some people do not progress through all of these stages/different rates. • People may be in more than one stage at a time and do not necessarily go through them in order.

20. A Contextual Theory of Dying • Stage Theory: Do not clearly state what a person to move from one to the other. • A contextual theory of dying • Emphasizes the tasks and issues that a dying person must face, and although there may be no right way to die, there are better or worse ways of coping with death. • Corr identified four dimension of tasks that must be faced. • Bodily needs, psychological security, interpersonal attachments, and spiritual energy and hope

21. Death Anxiety • Death anxiety is essentially universal in Western culture • However, defining and measuring it is difficult. • Several components have been identified, including: • Anxiety about pain • Body malfunction • Humiliation • Rejection • Nonbeing • Punishment • Interruption of goals • Negative impact on survivors • These components can be expressed at public, private, and unconscious levels.

22. Terror Management Theory • Cicirelli (2002) used terror management theory (TMT) to explain why some people may be more or less anxious about death. • Assumption: All humans are driven to survive. • Individuals may use such defense mechanisms as distraction to help remove death threats from immediate focal awareness. • May be maintained in consciousness for a longer duration before being reduced to a manageable level.

23. Hypotheses from Model 1. Individuals with more positive self-esteem will have less fear of death. 2. Individuals with an internal locus of control are expected to experience less fear of death, and, conversely, individuals with an external locus of control orientation are predicted to have greater fear of death. 3. Individuals with a strong support group of others with similar cultural beliefs will have less fear of death. 4. Individuals of higher SES levels within the society will have less fear of death. 5. Individuals with stronger religious beliefs will have less fear of death.

24. Results • Partial support for the hypothesis that cultural worldview variables are related to fear of death assessed at the level of immediate awareness. • Relationships of religiosity, externality, and social support to fear of annihilation were supported. • Higher self-esteem would be associated with less fear of annihilation (assessed by Fear of the Unknown), was only partially supported: Indirect effect? • Ethnicity, gender, age, marital status, and health were unrelated to Fear of the Unknown (annihilation), but gender and health were related to the Fear of the Known.

25. DoesReligiousness Buffer AgainstFear of Death and Dying? (Wink & Scott, 2005) • Religiousness in lateadulthood: Not strongerpredictor of fear of deaththan in youngeradulthood. • Moderatelyreligious people feardeath more thanthose not religious or veryreligious. • Fear of death: Particularly in highbelief for rewardingafterlife but lowreligiousness. • Lack of a philosophy of death?

26. Fear of Dying • No relationship between fear of dying and religiousness • Being older is correlated with being less afraid of dying. • Having experienced more bereavement and illness to bring about habituation • Fear of dying/death: Inversely related to life satisfaction

27. How Do We Show Death Anxiety? • Death anxiety is demonstrated in many different ways, including: • Avoidance of things connected with death • Such as refusing to go to funerals • Directly challenging death • Such as engaging in dangerous sports • Less common ways to express death anxiety include: • Daydreaming • Changing one’s lifestyle • Using humour • Displacing anxiety onto work • Becoming a professional who deals with death.

28. Learning to Cope With Death Anxiety • Several ways to deal with anxiety exist: • Living life to the fullest • Personal reflection • Death Education • Koestenbaum (1976) proposed several exercises: • Write you own obituary. • Plan your death and funeral services. • Consider that death could happen now.

29. Creating A Final Scenario • End-of-life issues • Managing the final aspects of life • After-death disposition of the body and memorial services • Distribution of assets • Making choices about what people do and do not want done . • A crucial aspect of the final scenario is the process of separation from family and friends. • Bringing closure to relationships • One’s final scenario helps family and friends interpret one’s death, especially when the scenario is constructed jointly.

30. Claxton-Oldfield et al. (2005) • Volunteering in palliative care: A study with undergraduates. • Have you ever thought of volunteering? Why or why not? • What do you think stops people from volunteering?

36. Preparing for Death • Hospice • An approach to assisting dying people that emphasizes pain management (palliative care) and death with dignity. • Hospice care emphasizes quality of life rather than quantity of life. • The goal is a de-emphasis on the prolongation of death for terminally ill patients. • Both inpatient and outpatient hospices exist. • The role of the staff is to be with patients, not to do things for patients.

37. Why Hospice Instead of Hospital? • Kastenbaum (1999) has shown that hospice patients tend to be less anxious, less depressed, and more mobile. • Spouses visit residents of hospices more often, and are more involved in their care. • Hospice staff members perceived as more accessible. • Hospice care often preferred by patients.

38. The Hospice Alternative • Hospice provides an important end-of-life option for many terminally ill people and their families. • Moreover, the supportive follow-up services they provide are used by many surviving family and friends. • However, adults cannot benefit from hospice care unless: • Family reluctance to face the reality of terminal illness and participate in the decision-making process is changed. • Physician reluctance to approve hospice care for patients until the very end is changed.

39. The Perspective of An Hospice Worker

40. Loss Through The Lifespan • Bereavement is the state or condition caused by loss through death. • Grief • The sorrow, hurt, anger, guilt, confusion, or other feelings that arise after a loss • Mourning • The way we express our grief • Mourning is heavily influenced by cultural norms • Society assigns different values on the death of people of different ages. • For example, the older the person is at death, the less tragic it is perceived to be. • The social view of the degree to which a death is considered tragic is an important aspect of the dying process.

41. How Do People Deal With Grief? • Grief is an active process in which a person must • Acknowledge the reality of the loss • Work through the emotional turmoil • Adjust to the environment where the deceased is absent • Loosen ties to the deceased • How these are accomplished is an individual matter • The amount of time to deal with death is highly individual. • Most agree at least 1 year is necessary.

42. Expected Vs. Unexpected Death • Grief is equally intense in both expected and unexpected death. • But may begin before the actual death when the patient has a terminal illness • Unexpected death often is called high-anxiety death. • Expected death is often called low-anxiety death. • Because deaths are usually less mysterious than unexpected deaths

43. Expected Death • Expected death does not mean that people do not grieve. • In a study of widows whose husbands had been ill for at least 1 month before their death grieved just as intensely as did widows whose husband died unexpectedly.

44. Figure 13.2 Comparison of grief intensity in widows whose husband’s death was expected and unexpected

45. What Is A Normal Reaction To Grief? • Normal feelings include: • Sorrow • Sadness • Denial and disbelief • Guilt • Religious feelings • Grief work • The psychological side of coming to terms with bereavement. • Anniversary reaction • Grief that often returns around the anniversary of the death.

46. Normal Grief Reactions • Effects of normal grief on adults’ health • In general, experiencing the death of a loved one does not inevitably influence physical health, BUT • Middle-aged adults are most likely to suffer health problems after loss. • People who have a hard time coping tend to have low self-esteem before losing a loved one.

47. Abnormal Grief Reactions • Abnormal grief usually involves excessive guilt and self-blame. • Abnormal grief reactions are defined in terms of the length of time grieving takes • Older adults who are still having difficulty coping longer than two years after the death: • Tend to have lower self-esteem prior to bereavement. • Are more confused. • Have a greater desire to die themselves. • Cry more. • Are less able to keep busy right after the death.

48. Death of One’s Spouse • Widowhood is more depressing for men than women, but men tend to be less depressed prior to beareavement. • Quality of support system important in bereavement. • Stronger feelings of continuing bond: Higher levels of grief 5 years later. • Bereaved spouses tend to have positive bias about their marriage: Depression associated with bereavement vs. depression when married.

49. Comparing Loss • In general, bereaved parents are the most depressed and have more grief reactions in general. • The intensity of depression in a bereaved person after a loss is related to the perceived importance of the relationship with the deceased person. • Survivors are more often and more seriously depressed after the death of someone particularly important to them.