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
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?
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
activities.
• Resolution of disagreements.
• Expression of affection and levity.
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.
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.
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.
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
1) A direct impact on perception of help that will
influence social interactions (e.g., extroverts will
rate social interactions more positively than
introverts.)
2) A moderator effect on the relationship between
perception and social interaction. (e.g.: Fewer
negative reaction in someone with high selfesteem but low fatalism)
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
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
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.
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.
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.
• 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
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.
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
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.
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.
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.
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.
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
adulthood.
• 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
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
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.
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 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.
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?
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 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.
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.
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 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.
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
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.
Figure 13.2 Comparison of grief intensity in widows whose husband’s death
was expected and unexpected
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.
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.
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.
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.
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.