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Caring for Those Who Cared for Us Vicki L. Schmall, Ph.D.
Professor Emeritus/ Executive Director Gerontology Specialist Aging Concerns Oregon State University West Linn, OR
Aging in Place …
Is this really the best for everyone?
Is independence always best preserved by aging in place?
Is “Aging in Community” a better focus?
An age-friendly home
Rural Support Services?
Modifying a home
Help for Staying “at Home”
Use community services Hire in-home help Modify the home Use assistive devices Housesharing Technology
Staff sensitive to diversity
A Move from home of 25 years … And aging-in-place!
Living Arrangement Decisions
Stay in current home? Move in with family? Retirement Center? Adult care home? Assisted living? Memory care?
Consider safety and functioning
Mental Health & Aging
Too often goes unrecognized in older adults Depression NOT a normal part of aging Significance of isolation
Suicide rates highest Alcohol problems?
Suicide
Alcohol Depression
Many older adults are healthy & active
Herbert
But, Changes ARE Inevitable…
And, the changes experienced in later life have implications
for the Family . . . And for community services!
There are only four kinds of people in the world:
Those who have been caregivers, Those who currently are caregivers, Those who will be caregivers, and Those who will need caregivers. Rosalynn Carter
Tom provided care to his wife, Claudia, for 12+ years
Who are the Family Caregivers?
Grant, 92, caring for wife, 91
The very old caring for spouse . . .
Sons and daughters caring for parents
Son Charles & Pat provide care to Herbert,
age 105
Claire caring for Grandfather Bill, 91
Warren cared for his partner
of 37 years
Providing Support from a Distance
Sabine traveled regularly from Oregon
to Germany
Ella, 78, is the legal parent to her 3 great
grandchildren.
Grandparents caring for Grandchildren . . .
Serial Caregiving
Paulette — late 30s
Paulette, at 69, raising four grandchildren, ages 7 to 14 . . . Husband has a major heart attack
Caregiving is NOT just a woman’s issue!
Each caregiving situation is unique . . .
The Journey of Caregiving
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0 1 2 3 4 5 6 7YEARS
HOURS
Bank Shop/Trans Household Other Tasks Personal
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HOURSCHILD
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Family Caregivers...
Are the backbone of long-term care
Essential in effectively helping frail older adults
Are affected by a family member’s illness.
Often become the “hidden patient.”
Research shows...
Caregiving can impact a family member’s life in
many ways!
Impact of Caregiving: Emotional Increase in depression
and anxiety. Associated with: – Role overload – Poor health – Lower life satisfaction
before caregiving – Being an adult child
caregiver Greater use of
psychotropic drugs
Impact of Caregiving: Physical Health
Poorer self-rated health status Aggravation of existing physical health
problems Decrease in immune system function Less likely to engage in preventive health
behaviors High level of psychological stress
associated with negative health outcomes
Impact of Caregiving: Social
Decreased time for other family members
Marital and family conflict
Decreased involvement in leisure, social and personal activities
Increased isolation
Impact of Caregiving:� Financial and Work
Coming to work late Leaving work early Rearranging work schedules Turning down promotions Quitting work or retiring early Taking time off without pay
“If the levels of stress, distress and illness found in caregivers were found in any other “profession,” health agencies and worker’s compensation boards would undoubtedly be waging major prevention campaigns.” —Nancy Guberman
Factors Related to Higher Caregiver Stress
Behavior and emotional problems in care receiver
Caregiver’s appraisal of situation as disruptive
Competing role responsibilities
Poor relationship prior to
caregiving Caregiving is not voluntary Disagreements among
family members Living with the care receiver
National Consensus Conference for Caregiver Assessment
Because family caregivers are a core part of health care and long-term care, it is important to recognize, respect, assess, and address their needs.
Caregiver assessment should embrace a family-centered perspective, inclusive of the needs and preferences of both the care recipient and family caregiver.
Caregiver assessment should be multi-dimensional in approach and periodically updated.
Caregiving is Stressful . . .
But, it is NOT universally stressful!
Spousal Caregivers Care tends to be more demanding,
more intensive, and more intimate.
Tend to report lower burden than adult children.
More likely to have health problems—3 to 5 chronic illnesses.
Physical demands often stressful.
Least likely to ask for help — Do not identify self as a caregiver.
At greatest risk of social isolation.
Adult Children as Caregivers
Most likely to experience role strain
Juggling multiple roles is negatively associated with caregiver well-being.
Emotional strain associated with… — Daughters—poor quality relationship and work interference — Sons—disruptive behaviors and fewer secondary helpers
Care receivers tend to have gender expectations—”daughters as caregiver.”
LGBT Caregivers
Older LGBT Caregivers
Closeted
Fearful of discrimination, hostility, & intolerance from providers
Reluctant to seek help and services
Reluctant to use LGBT programs
Reticent to disclose sexual orientation/ gender identity
What makes for a Positive Difference in the Caregiving Journey . . .
Having a sense of mastery and control
– Good information – Skill building — Sense of confidence
Having social -emotional support
– Perceived vs. actual support
– Value of support group
What makes a Positive Difference in the Caregiving Journey . . .
Using a direct style of coping, including: – Using help-seeking strategies – Using problem solving – Reframing problems
Finding meaning/rewards in caregiving
Taking breaks – Prevent—not treat—exhaustion – Discretionary—not obligatory—
activities
Programs Supporting Family Caregivers
Information & Referral
Education
Support groups
Respite
Adult day centers
Care management
Dementia caregiving: Impact
2018—Every 65 seconds someone in the US develops Alzheimer’s dementia; 2050—33 seconds.
2018—5.5 million 65+, 200,000 under age 65 2025— 7.1 million 2050—13.8 million
1 in 10 individuals 65+ 65-74 3%
75-84 17% 85+ 32%
(2018 Alzheimer’s Disease Facts and Figures)
Dementia Caregiving is Highly Stressful
Challenging Behaviors Catastrophic reactions Aggressive behavior Paranoia /suspiciousness Accusations of theft Hallucinations and delusions Wandering Sundowning Resistance to bathing Socially inappropriate behavior Repetitive questions
Remember: Everything is less understandable, less manageable, and more frightening to the person as the disease progresses.
A Personal Story . . .
My Parents . . . Grant & Iona
A Move from Home to a Memory Care Facility . . .
Two months later… Dad falls! … It’s related to the beatings from Mom.
Mom’s history was lost to her
Anything Positive About Facility Placement? Focus can be on companionship,
meeting emotional needs
Family relationships may be strengthened
Greater variety of activities
Increased interaction with others
Challenges & Tough Decisions
The “Big 5”
Driving Concerns
If a Family Member has Dementia…
The question is not IF a person should give up driving, but WHEN
Financial: When Problems arise with Managing Finances
Taking Action When Person Lacks Capacity . . .
End-of-Life Care
Message to Caregivers:
Taking care of yourself is the BEST GIFT you can give to the person
who needs your care
Professional messages that can make a positive difference . . .
1. It’s critical to take care of yourself when caregiving. 2. Maintain contact with friends and involvement in outside
activities. 3. You have a right to set limits and to say “NO”. 4. Begin taking breaks early in caregiving — It’s not selfish! 5. Asking for help is a sign of strength. 6. Make caregiving decisions based on needs of everyone
involved, not just the care receiver’s needs and desires. 7. A move to a care facility is NOT the end of a caring
relationship. 8. Focus on what you have done well — and forgive yourself!
