Rural Family Caregiving

1. Rural Family Caregiving Gail Gibson Hunt National Alliance for Caregiving AgrAbility Conference Burlington, Vermont November 2005

2. 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

3. 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

4. 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

5. 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

6. Helping with IADLs

7. Helping with ADLs

8. Unmet Needs

9. 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

10. Caregiving and Work • About 60% of caregivers work • Percent of those who make any workplace accommodation: 62%

11. 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

12. 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

13. 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”

14. 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

15. 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

16. 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

17. 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.

18. 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.