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Caregiving (Continued) and Dying and Death


Caregiving (Continued) and Dying and Death November 28, 2007 Preparing for Death Hospice An approach to assisting dying people that emphasizes pain management ... – PowerPoint PPT presentation

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Title: Caregiving (Continued) and Dying and Death

Caregiving (Continued) and Dying and Death
  • November 28, 2007

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

Tonights 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?

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.

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

Caregiving Can Have Benefits Too (Boerner et al.,
  • 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.

Impact of the Caregivers 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.

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.

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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.

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)

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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?

What is Death?
  • Clinical death
  • Lack of heart beat and respiration
  • Has been used for centuries as the criteria for
  • 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
  • No postural activity, swallowing, yawning, or

Medical Definitions of Death
  • Brain death
  • No eye movements, blinking, or pupil
  • 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
  • Persistent vegetative state
  • When brain-stem functioning continues after
    cortical functioning stops.

How Do People Approach Death?
  • Young adults report a sense of being cheated by
  • 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.

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

  • Kübler-Rosss model was driven by psychodynamic
  • 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

Dealing With Ones 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.

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

Death Anxiety
  • Death anxiety is essentially universal in Western
  • However, defining and measuring it is difficult.
  • Several components have been identified,
  • 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.

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

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.

  • 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
  • Higher self-esteem would be associated with less
    fear of annihilation (assessed by Fear of the
    Unknown), was only partially supported Indirect
  • 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.

Does Religiousness Buffer Against Fear of Death
and Dying? (Wink Scott, 2005)
  • Religiousness in late adulthood Not stronger
    predictor of fear of death than in younger
  • Moderately religious people fear death more than
    those not religious or very religious.
  • Fear of death Particularly in high belief for
    rewarding afterlife but low religiousness.
  • Lack of a philosophy of death?

Fear of Dying
  • No relationship between fear of dying and
  • 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

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
  • Daydreaming
  • Changing ones lifestyle
  • Using humour
  • Displacing anxiety onto work
  • Becoming a professional who deals with death.

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.

Creating A Final Scenario
  • End-of-life issues
  • Managing the final aspects of life
  • After-death disposition of the body and memorial
  • 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
  • Ones final scenario helps family and friends
    interpret ones death, especially when the
    scenario is constructed jointly.

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

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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.

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

The Hospice Alternative
  • Hospice provides an important end-of-life option
    for many terminally ill people and their
  • Moreover, the supportive follow-up services they
    provide are used by many surviving family and
  • However, adults cannot benefit from hospice care
  • 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.

The Perspective of An Hospice Worker
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.

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
  • Loosen ties to the deceased
  • How these are accomplished is an individual
  • The amount of time to deal with death is highly
  • Most agree at least 1 year is necessary.

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
  • Expected death is often called low-anxiety death.
  • Because deaths are usually less mysterious than
    unexpected deaths

Expected Death
  • Expected death does not mean that people do not
  • 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.

Figure 13.2 Comparison of grief intensity in
widows whose husbands death was expected and
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
  • Anniversary reaction
  • Grief that often returns around the anniversary
    of the death.

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,
  • 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.

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
  • Are more confused.
  • Have a greater desire to die themselves.
  • Cry more.
  • Are less able to keep busy right after the death.

Death of Ones Spouse
  • Widowhood is more depressing for men than women,
    but men tend to be less depressed prior to
  • Quality of support system important in
  • 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.

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