Transcript Coping with the Stress of PD for Patients and Caregivers

Coping with the Stress of PD
for
Patients and Caregivers
Donald McAleer Psy.D. ABPP
Northshore Neurosciences
Neuropsychological
Presentation in PD
• Global functioning 5-10 points lower
– Still within normal ranges
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Motor impairments
Bradyphrenia (mental slowing)
Visuospatial dysfunction
Concept formation / rigidity
Verbal fluency decreases
Parkinson’s
• 15.9 % of patients with PD show symptoms
of dementia (Marder et.Al. 1991). Other
studies as high as 20%.
• Still unclear whether Dementia is part of the
natural history of PD. Dementia often
shows in age group >70.
Parkinson’s
• Huge inter-individual differences
• Speculation on multiple subtypes
Emotional Changes in
Parkinson’s
• Depression is the most frequent
psychological symptom
– Incidence of 14.5% per year
– Some argue as many as 50% develop
depression
• Anxiety
• Hallucinations / Behavioral Changes
– Lewy body
Emotional Changes in
Parkinson’s
• Direct Mechanisms
– Depression associated with brain /
neurochemical dysfunction
– inefficient cognition
• Reactive mechanisms
– Life changes
Stages of Adjustment
• Stage 1 Denial
– “Its not me”
– Concealing Symptoms
– Seeks authority to deny
the illness
– Refuses help
– Holding onto past life
• Stage 2 Resistance
– “It won’t get me
down”
– Search for a cure
– Active in programs
– Reluctant to accept
help
– Recognizes needed
change in life patterns
Stages of Adjustment
• Stage 3 Affirmation
– “I guess I’ll face it”
– Accepting the loss
– Publicly explaining about
chronic illness
– Learning to accept help
– Re-arrange life priorities
• Stage 4 Integration
– “It’s there but I go on”
– Lives with the illness
– Time and energy spent on
life
– Accepts help when
necessary – in balance
– Integrates lifestyle with new
methods
Caregiver Defined
• Who are the caregivers?
– More and more family
members are taking on
the role of caregiver
– Family caregiving is
oldest form of care
system
– Caregiving tasks may be
rewarding or frustrating
Caregiving Defined
• What does caregiving entail?
– It can mean the person being cared for is living with
you, somewhere near you, or even several states
away
– Caregiving can be a 24 hour a day, seven day a week
responsibility
– Needs that caregivers address can include many
things
• Supervision, partial to total personal and/or physical care,
medication management…
Adjusting to Caregiving
• May experience grief or loss
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Personal choice
Relationship with loved one
Change in relationship with other family members
Social isolation
Loss of spontaneity
Loss of privacy
Loss of control
Ongoing cycle of grief
Stress of Caregiving
• Caregivers are at a high risk for developing
problems with distress and illness
• Many neglect their own health and self-care
• Potential consequences of caregiving
– Financial
– Emotional
– Social
What is Coping?
• Coping is the way that people respond to the
problems that life presents.
– Finding a way to deal with the situation and to
manage the symptoms of stress that develop as a
result of the situation
• The coping strategies that caregivers use are
an important predictor of how well people are
able to adjust to the demands of caregiving
and how well they are able to persevere when
long-term caregiving is needed.
Types of Coping
• Problem-focused coping
• (What can I do?)
– Focus is on the ill loved one
and the situation
– Trying to change the
situation in an
active/constructive way
– Try to manage or avert
problem that created the
stress
• Emotion-focused coping
• (How can I deal with the
feelings?)
– Seek social support
– Finding positive ways to
think about the situation
– Distance / Distract oneself
from situation
– Try to escape or avoid
problems
Patient coping Strategies
• Stay active
– Physically / mentally
• Stay Social
– Your network
– Support Groups
• Learn about your disease
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Read
Internet
National / Local Parkinson’s groups
Physician
Patient coping Strategies
• Be prepared
– Cognitive Changes
– Emotional Changes
• Maintain as much control as you can
– Treatments
• Give the caregivers a break
Informational Support
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About the disease
A Philosophical perspective
About current treatments
Coping strategies and hints
Coping- what seems to help
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Being active in your care
Flexibility
Control
Be realistic
Connections
A sense of purpose
Spirituality
Ways to Manage Caregiver Stress
• Develop goals that are accomplishable
– Accepting your limitations can help to ward off
burnout over time
• Getting adequate education about your loved one’s
illness is an important part of understanding the
caregiving situation
– Setting short-term goals can serve to give
caregivers a sense of accomplishment
Ways to Manage Caregiver Stress
• Try to set expectations for yourself that are
reasonable
• Establishing limits for yourself
• Get help!
• Care for yourself
– Express and understand your emotions
– Most frequent emotions experienced by caregivers:
• Worry, guilt/remorse, isolation, weariness,
anger/impatience, distress
Ways to Manage Stress
• More about caring for yourself:
– Look after your own physical health
– Make time for your own needs
– Involve others in care
• Get family members together
• Use community resources
Difficulties Faced in Caregiving
• Loved one’s illness may lead to behavioral and
emotional changes
– Some of these behavioral changes can increase caregiver
stress:
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Yelling out
Verbal and physical aggression
Wandering
Suspiciousness, accusations
Not sleeping
Repetitive questions
Resistance to care
Impulsive or careless behavior
Tips for Handling Difficult
Behaviors
• You cannot control the other person’s behavior- You
can control the way you choose to respond to the
behavior
• If the person begins yelling, choose to remain calm and speak in a
soft, firm tone
• Rather than internalizing the reason for the person’s
anger (i.e., I did something wrong again) keep an
external focus (i.e., He may be tired, it was a busy day).
• Try to focus on the behavior rather than the personality
(i.e., He’s mean).
Tips for Handling Difficult
Behaviors
• Acknowledge the person’s feelings
– Ex: “You seem very upset. What can we do to
change the situation?”
• Be willing to listen
– Ex: “What’s bothering you today?” or “You look
sad. Tell me what’s on your mind.”
• Try to respect requests, even if it may seem
small or insignificant.
• Try to find something to agree about. (Ex:
You’re right. It is chilly in here.)
Tips for Handling Difficult
Behaviors
• Give the illusion of control by offering
appropriate choices.
– Allow the person to choose between two
options for meals (chicken or fish)
– Allow for a choice of clothing
– Offer options for the daily schedule (Would you
like to take a bath before dinner or after?)
Tips for Handling Difficult
Behaviors
• If things become overwhelming, WALK
AWAY
– You may need to take a few moments, count to
10, walk outside, or get a drink of water
– Whatever you do during that moment, it is
sometimes better to remove yourself from the
situation to give yourself and the other person a
chance to calm down
Positive Aspects to Caregiving
• The caregiver may experience:
– Increased self-worth
– Feeling pride in the ability to meet the
challenges and demands of the role
– An opportunity to learn new skills
– Building a closer relationship with the person
being cared for
– Knowing that the loved one is getting the best
of care
Thoughts about the Daily Routine
• Pleasure is an important aspect in our quality
of life
– Help to keep the person you are caring for
connected socially
• Ask others to visit
• Have others make phone calls or send cards
• Visitors might engage in activities- taking a walk,
watching TV, play cards
– The caregiver can engage in pleasurable activities
with the person too
• Read aloud, watch a movie, gardening, make a
memory book together