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**AoA Update**

**Volume 2Issue 5****Administration on Aging****May 1997**

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#### Caregiving: Compassion inAction is theme of Older Americans Month 1997: Caregiver’sFair & Media Packet Focus on CaregivingNumber of Caregivers Rises; Challenges IncreaseRising Numbers of Grandparents Care For theYoungNative Elder News: Blackfeet Program AidsCaregiversStretching Shrinking $$$: Florida’sVolunteer Program Expands Services and SavesNews Note

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## "Caregiving:Compassion in Action" is theme of Older Americans Month1997: Caregiver’s Fair, Media Packet Focus on Caregiving

**O**n May 1, the Administration onAging (AoA) will kick off this year’s Older Americans Monthcelebration with a Caregiver Resource Fair. The Fair, one of thehighlights of this year’s celebration at the federal level,will draw some 300 to 500 federal employees, includingcongressional staff. A presidential proclamation is also expectedto be issued during Older Americans Month.

The Fair, which will be held on Thursday, May 1, from 10:00a.m. to 3 p.m. in the Great Hall of the Department of Health andHuman Services’ Hubert H. Humphrey Building, located at 200Independence Avenue, S.W., Washington, D.C., will featureexhibits from State Agencies on Aging and Area Agencies on Aginglocated in the Washington, D.C. metropolitan area, as well asnational and local organizations that offer information andservices to caregivers of the elderly. Staff of the AoA and otheragencies within the Department of Health and Human Services, aswell as representatives from organizations involved in the areaof caregiving, will answer questions from people who attend theFair.

In the adjoining auditorium, experts in the field ofcaregiving will make presentations throughout the day, withopportunities for questions from the audience, following eachpresentation.

An information packet about caregiving issues, designed foruse by the media and members of the aging network, has been sentout to the entire aging network and others who have expressed aninterest in this issue. In addition to information about OlderAmericans Month and a colorful poster, the packet includes factsheets on:

- Compassion        in Action: A Look at Caregiving in America
- The        Administration on Aging and the Older Americans Act
- The        Growth in America’s Older Population
- The        Eldercare Locator
- Home        and Community-Based Care
- Caregivers        and Caregiving 
- Grandparents        as Caregivers

Individual copies of these fact sheets will be available, onan ongoing basis, from the AoA Executive Secretariat whoseaddress and phone numbers appear at the end of each issue of the *AoAUpdate*.

Acting Principal Deputy Assistant Secretary for Aging, WilliamBenson, says that, "The caregivers of frail older personsand persons with disabilities embody the values of family life atits best. Their efforts greatly reduce the demands on formalsystems of supportive in-home and community services availableunder the Older Americans Act and other federal, state, and localresources. The efforts of informal caregivers enhance the qualityof life of older persons receiving care and prevent, or delay,costly institutionalization. Caregivers not only need oursupport, they deserve it."

The AoA’s web site address for Older Americans Month 1997materials is: http://www.aoa.dhhs.gov/may97

Additional information about caregivers and caregiving isavailable from: Irma Tetzloff of the Administration on Aging at(202) 619-3268.

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## Number of Caregivers Rise, ChallengesIncrease

For over 30 years, the AoA and the 57 State and TerritorialAgencies on Aging, 664 Area Agencies on Aging, 221 TribalOrganizations, and 27,000 service providers have created systemsof home and community-based services to meet the needs of at-riskelderly and their caregivers.

The services--ranging from information, in-home assistance andhome health care, home-delivered meals, and transportation tocommunity resources, legal assistance, day and respite care, helpwith long-distance caregiving, and the long-term care ombudsmanprogram--have paved the way and made it possible for a growingnumber of elderly to remain in their homes and communities.

In addition, the AoA’s national Eldercare Locator isavailable Monday through Friday, from 9 a.m. to 11 p.m. EST toassist caregivers across the nation in identifying and locatingneeded public and private resources and services. The number is1-800-677-1116.

Acting Principal Deputy Assistant Secretary for Aging, WilliamBenson, says that, "The informal caregiving system of familyand friends provides an estimated 80 percent of all the care andhelp needed by the 5 million elderly who are assisted by informalcaregivers, and we need to support them in their efforts."

While caregiving offers personal satisfaction both tocaregivers and the elderly, it has its costs in economic,physical and emotional terms. Benson says that, "Care-giversneed assistance in dealing with the stress, anxiety, anddepression that sometimes accompany caregiving."

In March of this year, the National Alliance for Caregiving, aconsumer advocacy organization, released the results of a majorsurvey on caregivers. The survey noted that absenteeism;shortened, or interrupted, workdays; decreased productivity; andreplacing employees, who leave to care for elderly familymembers, collectively, cost the corporate sector, at least, $11.4billion a year, and may exceed $29 billion.

The AoA has worked with the corporate sector to createinformation and counseling services for working caregivers and tosupport innovative work opportunities, from flexible workschedules to job sharing. Nevertheless, as the Alliance surveyshows, some caregivers find that the competing demands ofemployment and caregiving are too much, and cut back on thenumber of hours worked, turn down promotions, or leave theworkplace to assist older family members.

The National Alliance for Caregiving survey also shows thatcaregiving is on the increase and that nearly one in fourhouseholds is now involved in caring for an older relative,friend, or neighbor. 

The comprehensive look at caregiving found that 22.4 millionfamilies are providing assistance to the elderly, ranging frompersonal care and household help to transportation and finances.This represents a three-fold increase in the number of familiesinvolved in caregiving from a decade ago. 

The average caregiver, the survey found, devotes 18 hours aweek, while some 4.1 million caregivers provide at least 40 hoursa week. Typically, caregivers provide help for 4 years. Accordingto the report, caregivers spend about $2 billion a month forgroceries, medicine and other aid to elderly relatives.

A profile of caregivers shows that 30 percent are caring fortwo or more elderly relatives or friends, 64 percent areemployed, and 41 percent are also caring for children under theage of 18.

_______________________

Nearly one in four families is involved incaregiving.

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According to data from the AoA, the average age of caregiversis 46. Nevertheless, at least 20 percent of caregivers are theyoung-old caring for the old-old. Women represent 75 percent ofcaregivers, but husbands are, by far, the oldest caregivers, with42 percent aged 75 and over.

While the sheer numbers of older persons in the future presentformidable challenges, the AoA and the nationwide network onaging’s system of services and supports will help to make itpossible for a growing number of older Americans to remain intheir own homes and communities. What is more, recent surveyspoint to increasingly healthier cohorts of older persons who arealso better educated and more sophisticated in dealing with thechallenges that face them.

According to new findings from the National Long-Term CareSurveys, which followed the health and disability status innational samples of some 20,000 people in 1982, 1984, 1989, and1994, disability rates among older Americans are fallingdramatically, and the reduction in disability is gainingmomentum. The Duke University researchers who conducted thestudies, which are supported by the National Institute on Aging,estimate that 1.2 million fewer older people were disabled in1994 than would have been expected, based on disability rates in1982.

The number of older persons with functional problems in 1994stood at 7.1 million, rather than the 8.3 million who would havebeen impaired if the health of older people had not improved. 

Better public health measures, improved nutrition, higherlevels of education, improved economic status, and medicaladvances may all be involved in the decline in disability.

Nevertheless, the growing number of Americans 85 and oldermeans that there will be a continuing and, indeed, growing needfor the services and supports that have already helped so manyolder Americans and their caregivers to continue to share theirlives in the homes and communities where they want to be.

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## Rising Numbers of Grandparents Care For theYoung

According to the U.S. Bureau of the Census, some 3.7 millionchildren live in a household headed by a grandparent. In fact,for almost 1.3 million children, a grandparent, often thegrandmother, is their primary caregiver. This figure reflects anincrease of 27 percent in the number of children being raised bygrandparents since 1993. Nearly 46 percent of these children areAfrican American, almost 42 percent are Caucasian, and 12 percentare Hispanic.

In addition to focusing this year’s Older Americans Monthcelebration on caregivers of the elderly, the AoA is also payingtribute to grandparents as caregivers. According to the AoA,without "these grandparent caregivers and their criticalcare, millions of children would be denied the opportunity togrow up in stable homes and communities among their families andfriends."

While the concept of grandparents taking over parentalresponsibilities is not new, the unprecedented increase in thenumber of grandparents involved in childrearing is. Historically,families in the U.S., particularly in minority communities, havedepended on extended family arrangements for assistance inraising children and for economic survival.

Data collected by the American Association of RetiredPersons’ Grandparent Information Center, from a sampling of500 grandparent callers, indicated that 71 percent are theirgrand-children’s permanent primary caregivers. The averageage of the grandparents polled was 55, with nearly 75 percentbetween 50 and 70 years of age. 

The grandparents’ reasons for caring for theirgrandchildren ranged from parental substance abuse, child abuse,neglect or abandonment to unemployment, divorce, AIDS and thedeath of one or both parents.

Grandparents who take on parental roles often face a range ofchallenges, such as lack of support and respite services,affordable housing and access to medical care. In some cases,they may lack the financial resources to raise theirgrandchildren, may use their savings, or deplete their retirementfunds to do it.

The AoA has made provisions for programs that supportgrandparents, and has promoted multigenerational understandingthrough projects supported under the Older Americans Act Title IVdiscretionary grant program.

Two exemplary programs were administered through the New YorkCity Department for the Aging and the Pennsylvania Department onAging. New York’s program focused on training older personsto provide support and assistance to grandparents who werecaregivers. Pennsylvania’s program offered grandparents freeimmunizations for their grandchildren at senior centers inparticipating counties.

With the increasing number of grandparents and other olderrelatives assuming parenting roles, there is a growing need forthe aging network and others, in both the public and private****sectors,to create and support programs that will aid older Americans inthis vitally important role.

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*NativeElder News:**********BlackfeetProgram******Aids Caregivers***

Located in northwestern Montana, the Blackfeet Indian Tribe iscommitted to keeping its elderly and disabled tribal members intheir community by providing caregiving assistance. Since itbegan last year, the Personal Care Assistant (PCA) program hasalready grown from one client to 65.

Funded through a grant from the Blackfeet Tribe and licensedby the Montana Department of Health and Human Services, the PCAprogram’s aim is to prevent or delay institutionalization byproviding medically- necessary long-term supportive care toclients in their homes.

While the PCA program gives direct care, it also offers reliefto family members who are caregivers. Surprisingly, many of thesecaregivers are older tribal members who are caring for theiradult children. In fact, Connie Bremner, director of theBlackfeet PCA program, has been caring for her 38-year-olddaughter since 1975, when she suffered irreparable brain damage.Before the PCA program was established, Ms. Bremner had to leavework and check on her daughter throughout the day. Since theirhouse is heated with a wood stove, she feared that her daughtermight be burned or that there would be a fire. Now, thanks to thePCA program, Ms. Bremner is able to work, knowing that a PCA iscaring for her daughter.

Jess, a 42-year-old quadriplegic, has been cared for by his75-year-old mother since his years of denial and behavior hadalienated nursing home staff and family members to the pointwhere no one wished to care for him. Jess is now enrolled in thePCA program and receives 60 hours of care each week. The PCAprogram has also helped him to obtain a rental unit through theBlackfeet Indian Housing Authority. Jess is happy that he now canmaintain some independence, and his mother is relieved of some ofher caregiving responsibilities.

The Blackfeet PCA program has 59 part-time employees, whoreceive 16 hours of intensive training by medical team membersand 8 hours of yearly update training. A licensed nursesupervises the PCA’s and develops a service plan for eachpatient in conjunction with a physician. The nurse discusses theclient’s needs with the PCA, specific procedures for eachpatient, essential observations which need to be made regardingeach client’s health, and conditions which require theattention of the nurse or physician.

According to Connie Bremner, "We are the onlyIndian-owned PCA in the nation, to my knowledge, and through thisprogram, we are keeping families together, caring for clients,and putting people to work."

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***S t r e t c h i ng*********Shrinking****$$$**

(*This is the second in a series dealing withinnovative ways to increase services to the elderly.)*

**Florida’s Volunteer Program ExpandsServices and Saves**

Florida--the warm weather mecca of millions of America’sretirees--has the highest percentage of elderly in the nation.While most are active, self-sufficient members of theircommunities, those who have joined the ranks of the oldest of theold and those suffering from debilitating conditions, such asAlzheimer’s disease and strokes, need help if they are tolive independently.

As is the case across the country, the needs of older personsand their caregivers outstrip the availability of servicesprovided by paid professionals and paraprofessionals. Florida,however, has found a large part of the answer to thisproblem--volunteers; lots of them--a whopping 40,710 across thestate in fiscal year (FY) 1995-96.

Under Florida’s Volunteer Program, volunteers gave 4.4million hours of their time to help Florida’s at-riskelderly, many of whom do not have family members living in thestate. Were it not for these volunteers, it is estimated that anadditional $48 million in state funding would have been needed toprovide services to the elderly in 1995 alone.

Recruiting, training, and maintaining volunteers requiressubstantial effort, however, and that is where the Office ofVolunteer and Community Services helps. The Office uses variousresources to develop volunteer programs that meet elders' serviceneeds and promote volunteering among older Floridians.

The Office, which is within the Florida Department of ElderAffairs, promotes volunteer program develop- ment throughpublications on volunteering, training sessions on volunteermanagement and recruitment, and consultation and assistance tothe aging network and other organizations that serve elders.

The Office of Volunteer and Community Services works with theState Department of Highway Safety and Motor Vehicles to recruitvolunteers throughout Florida, using volunteer recruitment cardsthat are sent out with driver’s license renewal notices toresidents.

Under the able leadership of Abby Walters, the Office ofVolunteer and Community Services has two primary goals--to drawon the skills and strengths of older persons who want tovolunteer, and to promote volunteer programs that help serveelders who need assistance. The Office’s internal structureensures that it meets these goals through program development andinformation dissemination activities.

According to Florida law, the Office of Volunteer andCommunity Services is mandated to identify the service needs ofolder persons and recommend how these needs can be addressed byvolunteers. In 1994, the Department’s Volunteer SteeringCommittee conducted a survey that showed that elders needrespite, transportation, homemaker, meal delivery, chore andcompanionship services. 

The Steering Committee recommended that volunteers providethese services, with the exception of transpor-tation whichinvolved unresolved issues relating to liability, expenses, andequipment.****

The Office uses federal grants, private contributions, statemicro grants, local matching funds, and, of course, volunteers toencourage the development of volunteer programs that meetelders’ needs and to promote volunteering among elders.

The Office of Volunteer and Community Services alsoadministers an information clearinghouse to help citizens findanswers about aging issues and services. The clearinghouse workswith the Elder Helpline Information and Referral Network, and hasa library of over 2,100 resource items.

The Elder Helpline is the beginning point, in the state, forcommunity information and referrals. Callers are automaticallyrouted to an Elder Helpline through a local number or an in-state"800" number. Trained specialists provide informationon a range of topics.

The Office oversees a number of state and federal programsthat serve the elderly and make extensive use of volunteers.These include:

*Senior Companions**,* funded by theCorporation for National and Community Service, who receive astipend to provide respite, escort, homemaker, and companionshipservices to elderly clients with Alzheimer’s disease andother chronic conditions;

*FAVOR, Florida Alzheimer’s Volunteers OfferingRespite*, program which provides respite services tomostly low-income minority elders; 

*SHINE, Serving Health Insurance Needs of Elders,*whichuses volunteers to counsel and educate elders about healthinsurance, Medicare, Medicaid, managed care, supplementalinsurance, and long-term care insurance; and

*Intergenerational Programs*which use youngpeople to help frail elders improve the safety of their homes,deliver meals to unserved areas, and provide pet therapy for thehomebound and nursing home residents.

During FY 1996-97, several new volunteer activities wereinitiated. These include:

*Companion Link* in which 14 Senior Companions areassisting 37 elders with developmental disabilities;

An *AmeriCorps Grant* which enables 40 members and40 volunteers to provide in-home and facility support services toAlzheimer’s and other dementia-illness patients in Lee andBrevard Counties; and

*The Volunteer Coordination****PilotProject* which places two full-time coordinators ofvolunteers in two service agencies to measure the impact of acoordinated volunteer program.

The Office offers the following suggestions for a volunteerprogram:

> - Perform a needs assessment to determine the roles            volunteers can play;
- Develop a comprehensive plan to include volunteers in            providing services to the elderly; 
- Volunteers, and the agencies that use them, should be            covered by liability insurance;
- Volunteer coordinators who train, recruit, and manage            volunteers should be well trained;
- Volunteers need to be recognized for their efforts            and may need to be reimbursed for their out-of-pocket            expenses. This helps to recruit a diverse group of            volunteers; and
- Transportation may need to be provided for volunteers            who do not have cars and/or are not close to public            transportation.

Additional information about Florida’s Volunteer Programis available from: 

Abby Walters, Bureau Chief Office of Volunteer and CommunityServices Florida Department of Elder Affairs 4040 Esplanade WaySuite 260 Tallahassee, FL 32399-7000 (904) 414-2060 

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news note

The AoA’s Region I office will have a display devoted tocaregivers and caregiving in the lobby of the John F. KennedyBuilding in Boston, Massachusetts during the entire month of Mayto celebrate Older Americans Month. The Region I office hasinvited other federal agencies and organizations from the greaterBoston area to participate in the Older Americans Month event.

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AoA Update

**WilliamBenson**Acting Principal Deputy Assistant Secretary for Aging

**JudySatine**Director, Executive Secretariat

**JuneB. Faris**Editor

**AoAUpdate**Administrationon AgingU.S. Department of Health & Human ServicesWashington, DC 20201(202) 619-0724TDD: (202) 401-7575 FAX: (202) 260-1012E-mail: [email protected]Internet Web Site: http://WWW.AoA.DHHS.Gov