STRATEGIES FOR HELPING
TEENS AND CHILDREN COPE
WHEN A FAMILY MEMBER IS
DIAGNOSISED WITH FTD
Paul Higgins, M.Ed.
[email protected]
Becky Taylor, Ph.D.
[email protected]
Topics to be discussed.
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Statistics…Few, if any.
Role changes-Kid to Caregiver
Social Concerns and Acceptance
Economic changes within family and how
youth may perceive it.
Grieving & Stages of Grief
Erickson’s Psychosocial Developmental
Stages & Reactions
Resiliencies
Uncertainty of disease progression.
Explaining the unexplainable
How many children are
affected by FTD?
• As of now, there is no specific data
explaining how many children have
a parent with FTD.
• First diagnosis of FTD was in 1994
Role Changes-Kid to Caregiver
• What has changed since the diagnosis?
– Children
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Closer or could distant
Logistics
Handle business affairs
Family times change
Vacations change
Patience and understanding
Limited in what you can do to help based on age
Caretakers
– Drive
– Appointments
– Supervise
• Take care of other parent (women more likely to seek out help,
but men rarely seek out help.)
Resource: www.aacy.org American Assoc. for Caregiving Youth
Social Concerns
• Public appearances
• Leisure activities
– Out to dinner
– Shopping
– Visiting friends and family
• Socializing becomes increasingly
limited
• Isolation of other family members
Economic Changes
• Occupational status lost
• Loss of income
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Social security
Disability
Retirement funds
Family support or housing
Nursing home
• More leisure time to be supervised and
occupy
Grief Issues
• Loss of family as you knew it
• Acceptance of others into family—
resources
• Loss of income
• Change of lifestyle
• Change of friendships
• Understanding and Questioning
Stages of Grief…Where are you?
Where is you child?
• Stage 1: Denial--believe a mistake has been made (Wrong
diagnosis)
• Stage 2: Anger--difficult for everyone dealing with the
patient; may be critical of everyone
• Stage 3: Bargaining--Bargain with God or doctors. Some
may be kept secret. May have to do with guilt. Clergy can be
of assistance.
• Stage 4: Depression: Most common response; grieve loss
of the relationship, lack of ability to do things with them, or
withdrawing to prepare for the loss (dying or the relationship)
• Stage 5: Acceptance--accepted state; finds alternatives to
way to share time. (Talk less about the disease; more
reminiscence ; like to sit in silence with another person)
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Stage 1: Trust vs. Mistrust
Birth – 1.5 years
• “Trust is the cornerstone of the child’s attitude
toward life.”
• Evidence that the quality of the relationship with
caretaker in the first year predicts later relationship
behaviors.
• Secure attachment to caregiver at 12 to 18 months
less like to show high dependency on caretaker at 4
to 5 years.
• Outcomes:
– + Feelings of trust from
environmental support
– -Fear and concern regarding others.
Stage 2: Autonomy vs.
Shame and Doubt 1.5 – 3 years
• Practice new skills and develop autonomy
• If pushed too hard, may develop doubt. Autonomy leads
to low self-esteem.
• Encourage children to do what they can do for
themselves.
• Praise vs. encouragement.
• Outcomes:
– +Self-sufficiency if exploration is
encouraged
– -Doubts about self,
lack of independence
Stage 3: Initiative vs. Guilt
3 – 6 years
• Around 4, children can develop a plan of action
and carry it through, which gives a sense of
initiative.
• Encourage children to form their own ideas,
initiative, self-starters, accept challenges.
• If punished, develop a sense of inferiority
• Outcomes
– +Discovery of ways to initiate actions
– -Guilt from actions and thought
Stage 4: Industry vs.
Inferiority
6 – 12 years
• Learning social skills and education skills
• In accomplished, child develops a sense of
industry.
• If compared to others, develops a sense
of inferiority
• Compare children whose work
is always on the refrigerator vs.
the child who no one knows or cares
if he/she is home.
• Outcomes:
– +Develop a sense of competence
– -Feelings of inferiority, no sense of mastery
Stage 5: Identity vs.
Identity Confusion Adolescence
• Making decisions about the future and who
they are and where they belong. Those who
don’t develop this may have a sense of
aimlessness.
• May be reason suicide is such a problem
• Outcomes
– +Awareness of the
uniqueness of self,
knowledge of the role to be followed.
– - Inability to identify appropriate
roles in life
Stage 6: Intimacy vs.
Isolation
• Outcomes
Early Adulthood
– +Development of loving, sexual
relationships and close friendships
– -Fear of relationships with others
Stage 7: Generativity vs.
Stagnation Middle Adulthood
• Outcomes
– +Sense of contribution to continuity of
life
– -Trivialization of one’s activities
Stage 8: Ego-integrity
Versus Despair Late Adulthood
• Outcomes
– +Sense of unity in life’s
accomplishments
– -Regret over lost opportunities of life
BE
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SIL ILIE
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What keeps kids bouncing back?
Personal Resiliencies
• Intelligence/Education
• Knowledge about the disease (web sites, books)
• Initiative—seeking out resources, making contacts,
sharing stories
• Sense of humor (humor…making something nothing)
• Religious beliefs = Prayer/Meditation
• Extracurricular Activities
– Athletics
– Clubs
• Creativity
– Journaling (activities)
– Hobbies
– Music
– Arts (art…making something out of nothing)
Personal Resiliencies
• Physical Health
– Exercise
– Sleep/eat
• Positive Self-talk
• Ability to seek out others
• Finding meaning
Man’s Search For Meaning- Viktor Frankl
“To live is to suffer, to survive is to find meaning
in the suffering. If there is a purpose in life at all,
there must be a purpose in suffering and dying.
But no man can tell another what this purpose is.
Each must find out for himself, and must accept
the responsibility that his answer prescribes.”
“What alone remains is the last of human
freedoms-the ability to choose one’s attitude in a
given set of circumstances.”
Social Resiliencies
• Family members (Families by birth)
(genogram)
• Friends (Families by choice)
• Support Groups (web site; name of
the one here)
• Religious affiliations—prayer
groups
• Work
Who can I lean on?
Work
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Family, Friends & Neighbors
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Number 1 Resiliency
•SOCIAL
SUPPORT
Example of Genogram
Children’s Genogram
©Becky Taylor, Ph.D., LPC-S, LMFT, Madeleine Clement, M.Ed., LPC-I
SF Genogram Symbols
talk to
calm
brave
works hard
keep a secret
A+
smart
close to
go to for help
eat dinner with
spend the day with
strong
loves me
safe with
Help with
homework
Plays with me
needs me
funny
good hugs
Uncertainty of disease progression
Explaining the unexplainable….
•Be open to accepting others into your
“family”
•Be honest in your communication
•Think before you speak…what is adult talk
and what is kid talk
•Use different people as
informants…Doctor, Family Members,
Friends, Clergy & Counselors
“He who has a why to
live can bear with almost
any how.”
-Nietzsche