View Power Point Presentation (PDF) - Cornell CARES

Family Caregivers and
Caregiver Stress
Kathleen Triche, DSW, LCSW
Manager, Family Caregiver Center, St. Vincent’s Catholic Medical
Center
Emily Finkelstein, MD
Assistant Professor of Medicine, Weill Cornell Medical College

Caregiver
definition
• A caregiver is one who helps manage
tasks of daily living: including the
management of symptoms and the
integration of the patient’s treatment
regimen into his or her patterns of daily
life.
• Lane, Hyer and Leventhal, 2005

Demographics
• 45 million caregivers of family and friends
in US
• 23 million households are home to
caregiver (AARP survey, 2004)
• 43 per cent are over 50
• 13 per cent over 65

Issues
• Caregivers give up job transfers and
advancements, miss vacations, abandon
hobbies, neglect their own health.
• They give up supportive relationships -
they lose networks and friends
• Financial strain - because Medicare,
private insurance and Medicaid assistance
is limited, caregivers use up financial
resources

What is known about this
dynamic?
• Caregiver burden
– Physical
– Emotional
– Financial
• Benefits
Sick Child, Edvard Munch (1907)

Stress and Caregiving
• Caregivers are at risk for many mental and
physical illnesses
• Results from stress, exhaustion, selfneglect

Research
• Caregivers more likely to get infectious
diseases
• Slower to heal from wounds
• Greatly elevated blood levels of chemical
linked to chronic inflammation
• Puts them at increased risk for heart
disease, arthritis, diabetes, cancer
• Janice Kiecolt-Glaser and Ronald Glaser

Research
• Caregivers risk continues several years
after caregiving duties end
• Highest risk for caregivers over 65
• Increased risk for anxiety and depression
• Keicolt-Glaser

Mr. and Mrs. P
• 78 yo female seen as new patient for
memory loss and increased anxiety
• Brought into office by grandchildren,
accompanied by husband
• Evaluation led to diagnosis:
– Alzheimer’s dementia

Mr. and Mrs. P
• Over time, patient continued to decline
predictably.
• Mr. P is primary caregiver
– Has resisted all help

Mr. and Mrs. P
• Crisis:
– Mr. P prepares for routine cataract extraction.
Pre-op evaluation reveals new heart murmur.
ECHO shows 3+ MR, cardiac cath reveals
triple vessel disease.
– He needs urgent valve replacement and
CABG

Mr. and Mrs. P
• Mr. P accepts help from son and dtr-in-law
who arrange to have Mrs. P stay with them
while Mr. P in hospital
• Mr. P continues to worry about Mrs. P
above himself
• Son more objective, able to listen to
options – i.e. hiring help, etc.

“O Through 9”, Jasper Johns (1961)

Mrs. S
• 93 yo female with advanced dementia
• Moved back from Florida to stay with
daughter in Manhattan, who assumed
primary caregiving role, and brought
patient to office for transfer of medical care

Mrs. S
• As Mrs. S declined, her office visits
became more frequent for:
– UTIs
– Falls
– Confusion
– Agitation
– Depression

Mrs. S
• Daughter with patient 24/7
• Gave up job, re-arranged her studio
apartment
• Declined to accept help
• Stress level increasing

Mrs. S
• Daughter eventually agreed to caregiver
support group
• Then agreed to day care program
• Then agreed to hire help for several hours
per day

Mrs. S
• Patient eventually became bedbound, was
referred for home hospice after many
conversations with daughter.
• After pt’s peaceful death at home,
daughter was devastated, but also
relieved, and very proud.

Who are caregivers?
The Gulf Stream, Winslow Homer (1899)

Mrs. E. B.
• Mrs. B is an 81 year old widowed woman
with middle stage dementia.
• She lives in Connecticut in a Senior
Building sponsored by HUD
• She has a social worker and home
attendant services 6 hours per day
• She is alone the rest of the time

Caregiver
• Ms. B has 8 children
• 5 of the children abuse alcohol or drugs
• One son manages her finances and visits
Sundays
• Daughter M. lives in NYC and shares the
caregiving responsibilities with brother
• M. is married, has an 11 year old daughter

Caregiving issues
• Family history: Mrs. B’s husband was an
alcoholic and abused the children
• Mrs. B. was withdrawn, a distant and
critical mother and did not believe the
children were being hurt
• M., the daughter, was traumatized by the
abuse and is experiencing painful
memories as she cares for mother.

Services
• M. is in individual psychotherapy and on
medication for depression
• M. is in a caregiver support group and is
able to share her experiences with other
sons and daughters who grew up in
abusive families.
• Issues related to her mother, her current
family including her daughter are
addressed.

Reaching out for help
• Many caregivers try to do everything by
themselves
• Family roles/traditions often influence this
• Caregivers often don’t know where to go
for help or what to do first
• Some see it as weakness to accept help (I
should be able to do this)

Emotions
• Profound sadness
• Rage
• Empathy and love
• Guilt over the anger and frustration
• Upset feelings over sacrificing careers,
love relationships, friendships, dreams
• Jed Levine, Alzheimers Association

Emotions
• Embarrassment and shame when their
feelings are revealed to others, including
helpers
• Unresolved family dynamics may get
activated. Sibling rivalry, step-parents,
second marriages may complicate things.
• Often older people (70’s and 80’s) find it
difficult to talk about their feelings

Ethnic Differences
• Caregiving differs with ethnicity and
cultural backgrouds
• Research suggests that Hispanic and
African American caregivers are less likely
to admit being stressed, burdened or
depressed by caring for loved ones
• But researches find they have high levels
of depression and stress

Ethnic Differences
• Studies show that Hispanic and African
American caregivers report have to
struggle to patient needs met.
• Resources may not be easy to obtain.

Cultural and Age Issues
• Cultural and age barriers should be
considered

Providing help
• Encourage caregiver to find a caregiving
buddy - a person who’s facing a similar
situation and could be a confidante
• Encourage joining a support group
• Patience from family and friends
• Acknowledge the job caregiver is doing.
Validate stress.

Providing help
• Help can be simple: giving caregiver
respite so they can do things like get a hair
cut, go to the doctor
• Paperwork help is useful
• Recommendations from a health care
provider whom the caregiver trusts is
helpful.

Helpful interventions
• Listening
• Monitoring health problems (sleep
deprivation, exhaustion, limping, falls)
• Encouraging them to get mammograms,
flu shots, checkups.
• Recognize when additional professional
help is needed including referrals for
antidepressant medication and therapy

Spousal Issues
• Usually older
• Sensitivity to relationship issues
• Long existing relationship issues may
surface
• Battles with adult children, especially
around caregiving, placement, financial
issues
• Marital conflict may be reactivated.

Spousal caregivers
• Inability to communicate as they once did
• Relational deprivation
• Loss of reciprocity with spouse with
dementia
• Positive feeling of “we are in this together”
ends
• Produces sadness and feeling of loss

Adult Children as Caregivers
• Unresolved issues may arise
• Idea of giving back to some who took care
of him or her
• Adult children who were abused as
children may have difficulty with this role.
• Issues of financial or physical abuse may
occur.

Mother and Child, Keith Haring (date unknown)

Gender issues
• AARP article says men seem to be less
depressed or isolated. However, men less
often seek professional help
• However, alcoholism and some abusive
behavior due to frustration can appear.

Seeking help
• Seeking help is the best positive move
• Finding spiritual peace
• Easing stress
• Deep breathing/ relaxation methods
• Simple meditation
• Mind-body healing - Herbert Benson, MD

ThisCaringHome.org
Rosemary Bakker, MS, ASID, Weill Cornell Medical College