Rural Family Caregiving
Gail Gibson Hunt
National Alliance for Caregiving
AgrAbility Conference
Burlington, Vermont
November 2005
Family Caregiving in the US
• Latest research shows:
• 44.4 million caregivers (1 in 5 people)
– 34 million caring for those 50+
• Profile: 46-year-old baby boomer
woman who works and cares for her
mother who lives nearby
• Nearly 40% are men
More About Caregivers In General
• 80% of care provided to older people is
unpaid care by family and friends
• Economic value of caregiving to society:
$257 billion/year
• 15-20% of the workforce
• Average $200/mo. out-of-pocket
Who are the care recipients?
• 83% are relatives, most often mother,
mother-in-law, grandmother
• Average age of older care recipient: 75
• 23% have Alzheimer’s or other
dementia
• Principal problems or diagnoses: “old
age”, cancer, diabetes, heart disease
Intensity of Caregiving
• Average of 21 hours per week
• Those who say “constant care” (40+
hours per week) tend to:
– Be co-resident
– Be in fair or poor health themselves
– Care for someone with Alzheimer’s
– Have lower income
• ADLs and IADLs
Helping with IADLs
Percent
Transportation
82
Grocery shopping
75
Housework
69
Managing finances
64
Preparing meals
59
Helping with medication
41
Managing services
30
Helping with ADLs
Percent
Getting out of beds and chairs
36
Getting dressed
29
Helping bathe or shower
26
Getting to and from the toilet
23
Feeding care recipient
18
Dealing with incontinence or
diapers
16
Unmet Needs
Percent
Finding time for myself
35
Keeping the person I care for safe at home
30
Balancing my work and family responsibilities
29
Managing my emotional and physical stress
29
Easy activities I can do with the person I care for
27
How to talk with doctors
22
Making end-of-life decisions
20
Moving or lifting the person I care for
16
Managing challenging behaviors, such as wandering
14
Choosing an assisted living facility
13
Choosing a home care agency
13
Managing incontinence or toileting problems
11
Impacts of Caregiving
•
•
•
•
•
Financial: $200 per month out-of-pocket
Emotional: One-third report caregiving is
somewhat or very stressful
Physical: Only 15% report strain
Health:
– 17% of all caregivers report fair or poor health
– 35% of those doing most intense caregiving
– More physician visits
Caregiving and Work
Total %
• About 60% of
caregivers work
• Percent of those
who make any
workplace
accommodation:
62%
Come in late,
leave early
57
Took leave of
absence
17
Full-time to
part-time
10
Lost job
benefits
5
Turned down
promotion
4
Chose early
retirement
3
Gave up work
entirely
6
MetLife Studies
• 1997 Employer Costs for Working
Caregivers
• $11.4b to $29b per year
• Juggling Act Study
• $659,000 loss in terms of wages,
pensions and social security over a
“career” of caregiving
Who are the rural caregivers?
•
•
•
27% of caregivers live in rural areas: approx
12 million people
Demographically, look very similar to
urban/suburban caregivers
Some differences: rural caregivers are more
likely to
–
–
–
–
Be married; have kids under 18 living with them
Be Caucasian
Have less formal education and lower income
Less likely to be employed
Some other differences of rural
caregivers
• More likely to use prayer as a coping
mechanism
• Less likely to turn to the Internet for
information; more likely family and friends
• Less likely to use support groups, adult day
care services, transportation services
• More likely to be Level 5 in intensity; 20% are
doing “constant care”
Who are the rural care recipients?
• 27% live in rural areas
• Typically a mother (23%); grandmother
(10%); or father (9%)
• More likely to still be married
• Most common illnesses: arthritis; blindness;
diabetes; mobility; less dementia
• Somewhat less likely to need incontinent care
• Two-thirds live nearby or in the same house
as the caregiver
More characteristics of rural care
recipients
• Their caregivers are more likely to
experience financial hardship: between
$24-34/month more in out-of-pocket
• More likely to be a vet
• More likely to report home modifications
• Their caregivers are less likely to get
unpaid help other than themselves
Interface between formal and
informal care not well understood
• Presumption that limited access to formal
care increases importance of informal care
• Shenk’s view that rural elders may be more
independent and hesitant to seek help vs.
Buckwalter & Davis’s view that they lack
information on services and hesitate to use
because of “welfare” stigma
Important factors in designing
rural services
• Recognition that rural communities are
diverse in population characteristics, values
and culture.
• Initiatives that involve local residents during
the design, planning and implementation
stages.
• Recognition that geographic distance is not
only a geographic barrier, but a psychological
barrier as well.
• Initiatives that recognize the importance of
fictive kin, neighbors and friends in rural
support systems that may contain few close
relatives because of out-migration.
More important factors in designing
rural services
• Service and access hours that reflect the
needs of working caregivers – on a variety of
work shifts.
• Outreach and service design factors that do
not stigmatize the caregiver or the care
recipient.
• Mobile options that bring assessment,
services and support to the caregivers and
their care recipients.