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

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 Transportation82 Grocery shopping75 Housework69 Managing finances64 Preparing meals59 Helping with medication41 Managing services30

Helping with ADLs Percent Getting out of beds and chairs36 Getting dressed29 Helping bathe or shower26 Getting to and from the toilet23 Feeding care recipient18 Dealing with incontinence or diapers 16

Unmet Needs Percent Finding time for myself35 Keeping the person I care for safe at home30 Balancing my work and family responsibilities29 Managing my emotional and physical stress29 Easy activities I can do with the person I care for27 How to talk with doctors22 Making end-of-life decisions20 Moving or lifting the person I care for16 Managing challenging behaviors, such as wandering14 Choosing an assisted living facility13 Choosing a home care agency13 Managing incontinence or toileting problems11

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 About 60% of caregivers work Percent of those who make any workplace accommodation: 62% Total % 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.