Caregiving

• Rosalynn Carter once said, "There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."

National Alliance for Caregiving

• Nonprofit coalition of more than 40 national organizations

• 1996 • Founding members– AARP, American Society on Aging, the National

Council on the Aging, US Department of Veterans’ Affairs

Caregiving in US

• 80% of long-term care services provided to elderly is unpaid care by family and friends

• The economic value of caregiving in the US was estimated to be $306B

• Fifteen to twenty percent of the workfoce in the US in engaged in caregiving at one time

• Average out-of-pocket cost for a caregiver is $200/month

Rural Caregiving

• 64% of rural caregivers are married, 6% living with a partner, 6% widowed, 14% separated or divorced, 11% were never married

• 86% of rural caregivers are White, 7% Hispanic, 6% Black

• 25% live in the same household, 60% live within one-hour drive, 4% live between one- and two-hour drive away, 11% live more than a two-hour drive away

• 41% of rural caregivers have children or grandchildren living with them

Rural Caregiving

• Rural caregivers spend an average of 21 hours per week caregiving, 19% of them spend more than 40 hours per week

• 14% of rural caregivers and 20% of their care recipient are veterans

•

Differences rural and urban caregiving?

• Demographics– More elderly– Outmigration– Poverty and disability

• Distance– Family support– Urban more likely closer– Children and services farther away

• Care norm and patterns– Rural –higher expectations– Not extended families– Fictive Kin—individuals who while not related imbued with the same

rights and responsibilities as kin

• Older woman support depends on:– Social interaction pattern over lifetime– Length of time in community– Family configuration• Marital status• Geographic location of children

Care recipients

• 70% of rural care recipients were women and 30% men• 20% of recipients under 50 years of age and 80% were

50 and over, 27% of the total between 75-84• Nearly 74% of rural care recipients lived in their own

homes• 29% of rural care recipients were married, 48%

widowed, 13% single and 10% divorced or separated • 13% of care recipients main problems were the “results

of old age”, 8% diabetes, 7% cancer and 75 Alzheimer’s/dementia

Unique to rural caregiving• Limited use and availability of services in rural areas• The significant impact of caregiving on rural workplaces• The financial hardships rural caregivers with low incomes face• The stress of rural caregiving and related coping mechanisms• The level of availability and concerns regarding use of the

Internet• The prevalence of disability related to incidents in farming and

ranching operations• The current and increasing number of veterans in need of care in

rural areas– 2% of all veterans live in rural areas– In Vermont—50% of veterans live in rural areas

Rural Caregiving

• Long term care admission rates for rural elders higher than urban communities

• Not follow cultural tradition –”take care of own problems.”

• What caused??

Rural Caregiving

• Why not receive assistance?– Do not know they are eligible for caregiver assistance

services?– Are unaware that such programs exist in their

community– Are too embarrassed to accept services they view as

‘welfare’– Are reluctant to see services unless there is a “crisis”– Find existing services too geographically distant to be

helpful

Rural Caregiving

• Demonstration projects– Endorsed by community leaders– Staffed by persons who live in or are familiar with

the cultural and social values of the community– Compensate for geographic isolation through the

combination of periodic home visits and innovative information technologies and telecommunications

Question: What resources are available on caregiving for specific illnesses or diseases?

• Answer: For information on specific illnesses or diseases, there are several useful websites, including:

• Parkinson’s disease – The National Parkinson Foundation provides a caregiver website with resources.

• Alzheimer’s – The Alzheimer's Association provides valuable information for family and friends. You can also search your state to locate your local Alzheimer’s chapter or by calling their toll free 24 hour helpline at 1-800-272-3900. MedlinePlus provides information for Alzheimer’s caregivers.

• Cancer – The American Cancer Society provides information for family and friends. The National Hospice and Palliative Care Organization assists in locating providers and support in your area.

• Diabetes – The American Diabetes Association has a Family Link program, which connects you with other families of kids with diabetes. Not all states have a network.

• Heart conditions – The American Heart Association provides a caregivers guide for those caring for loved ones with heart failure and strokes.

• Lung conditions – The American Lung Association has support groups and information for those living with COPD as well as caregivers.

As a caregiver, how do I find out what services are available in my community?

• Visiting Angels consists of non-medical, private duty home care agencies providing senior care, elder care, personal care, respite care and companion care to help the elderly and adults continue to live in their homes across America. Caregivers provide up to 24 hour care, at affordable rates.

• Caring Connections is a program of the National Hospice and Palliative Care Organization that provides free resources, information and motivation for actively learning about end-of-life resources and helps people connect with the resources they need, when they need them. They provide information on home health care, respite care, transportation programs, meal programs, cleaning and yard work services, senior centers, adult day care services, and home health aides & hired caregivers.

• Caregiving Across the States is an online resource that provides information on publicly-funded caregiver support programs in each of the 50 states and the District of Columbia.

• The Eldercare Locator, a service of the U.S. Administration on Aging, connects older Americans and their caregivers with sources of information on senior services in their area.

• The National Family Caregivers Association (NFCA) provides Caregiving Resources, a listing of caregiving information including organizations, websites, hospices, advocacy sources, prescription assistance, respite resources, training for caregivers, and volunteer agencies.

• The National Private Duty Association maintains a website for homecare providers for all 50 states. Private duty describes a wide variety of home care services that includes non-medical services such as home care aides, companion care, and homemaker services, as well as some traditional skilled nursing and therapy services. Often, the key difference between private duty and traditional home care companies is the source of payment: Private duty home care is NOT paid by Medicare.

• Rural Caregivers provides caregiver resources by state/region. It is designed to help bridge the information gap between geographical isolation, gaps in rural service delivery systems, and the unique needs of agricultural workers with disabilities by creating a web support community for rural caregivers.

• The National Association of Professional Geriatric Care Managers can help locate a care manager to help with caregiving issues. This person is a professional, such as a gerontologist, nurse, social worker, or psychologist with a specialized focus on issues related to aging and elder care. They work privately with older adults and their families to create a plan of care that meets the needs of the older adult.

• Easter Seals provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, camps for special needs children and more. Services vary by site.

• The National Adult Day Care Services Association has programs designed to meet the needs of functionally and/or cognitively impaired adults through an individual plan of care. These structured, comprehensive programs provide a variety of health, social, and other related support services in a protective setting during any part of a day, but less than 24-hour care. Adult day centers generally operate programs during normal business hours five days a week. Some programs offer services in the evenings and on weekends

Are there food assistance programs for the elderly?

• Answer: The Meals on Wheels Association of America is the oldest and largest organization in the United States representing those who provide meal services to people in need. This program provides one hot meal per day to seniors. The guiding principle to which it subscribes is to help those men and women who are elderly, homebound, disabled, frail, or at risk. The Meals on Wheels program has recently expanded into rural parts of our country due to the ability to offer individually packaged, frozen meals with foods that are simple to reheat as needed and can be ordered a month at a time.

• The USDA Adult Day Care Food Program is a Federal program that provides healthy meals and snacks to adults receiving day care. It plays a vital role in improving the quality of day care and making it more affordable for many low-income families. Nonresidential, functionally impaired adults who are receiving adult day care in an eligible day care facility, or aged 60 and older may qualify.

Housing

Federal Policy on Housing

• No comprehensive plan• Supplementary rather than comprehensive approach

– None adequately funded• Section 8—Rental subsidies or vouchers

– Meet the housing needs of low income– Nearly half are older adults– Section 202

• Housing construction program• Encourage nonprofit to develop congregate rental housing for 62 and

older

– Section 250• Federal mortgage program—reverse loands

Housing in rural

• Smaller-scale projects– Raises cost per unit

• Lack necessary personnel to develop and implement federal housing programs

• Higher levels of rural poverty increase risks and make it more difficult to construct new housing

• Lack of transportation and access to services

Rural Housing Service • Agency of the United States Department of Agriculture (USDA). Located

within the Department's Rural Development mission area, RHS operates a broad range of programs to provide:

• homeownership options to individuals; • housing rehabilitation and preservation funding; • rental assistance to tenants of RHS-funded multi-family housing complexes; • Farm labor housing; • help to developers of multi-family housing projects, like assisted housing for

the elderly and disabled, or apartment buildings; and • community facilities, such as libraries, child care centers, schools, municipal

buildings, and firefighting equipment to Indian groups, nonprofit organizations, communities and local governments.

• RHS programs are available to eligible applicants in rural areas, typically defined as open country or rural towns with no more 20,000 in population

Retirement Communities

• Naturally occurring retirement communities (NORC)– Local attraction without planning

• Leisure oriented retirement communities (LORC)– Cater to the desires of wealthier elderly

• Care oriented retirement communities (CORC)– Continuing care committees

Problems with these communities

• Rarely mentions these are very expensive • Not available in rural –only real choices

available are home ownership, rental housing (both of which may be substandard) or some form of care arrangement—nursing home

• Imply a range of accompanying services—transportation problem

Best practices

• Home sharing– Unrelated adults sharing a home – Share incomes

• Share-a-home– Group of unrelated older adults rent a large home – Not fit regulatory models

• Cooperative Living arrangements– Number of older consumers to design a service package

reflective of their means and needs – Usually churches and fraternal groups

Barriers to Rural Housing

• Personal barriers– Prefer single-family owner-occupied – Rural—land ownership

• Political barriers– Not politically powerful – Almost invisible – Low property values and tax rates—lead to less services

• Social barriers• “Keep things as they are” • Those in other areas unwilling to embrace public policies that

require sharing scarce resources with a population that is believed to be unable or unwilling to address its own problems