LJ Collection Development- Helping Hands: Caregiving Resources

Caregiving has become an unavoidable fact of American life as the average life span continues to increase. Three out of four adults now live to age 65 and make up nearly 13 percent of the total population. Although many in this group are independent and productive, some 8.5 million people will suffer from chronic health problems by age 70 and will need assistance with daily tasks such as bathing, dressing, and preparing meals. This number is expected to increase to 21 million by 2030 as the baby boom generation ages. And family members are likely to continue to provide much of the help required.

Currently, some 27 million American families care for elderly relatives. Primary caregivers are usually adult daughters, daughters-in-law, and spouses. Forty percent are members of the 'sandwich generation,' looking after young children and older parents at the same time. The average age of primary caregivers is 46, but 12 percent are 65 or older, often struggling with their own health problems while caring for an ill spouse.

The information needs of caregivers are as varied as their situations. Some who don't live in the same geographic area as their relative must find health and other services in an unfamiliar location. Families of those suffering from Alzheimer's or other memory disorders face significant challenges, coping with behaviors that are difficult to manage and that can put the safety of others at risk. In addition, looking after an older person is physically and emotionally demanding, and caregivers need ways to cope with the stress and find solace and meaning in their duties.

Libraries can offer resources to enable caregivers to provide the best care possible, recognize when they can no longer offer the kind of care their family member requires, and enhance their caregiving experience. [For additional information, see Linda Lucas Walling's Library Services to the Sandwich Generation and Serial Caregivers (American Library Assn., 2001), number four in the Association of Specialized and Cooperative Library Agencies (ASCLA) 'Changing Horizons' series.]

A core collection will include basic materials on aging, especially those that cover health, finances, legal issues, hiring in-home help, and nursing homes and other housing choices. Guides that offer clear overviews of complex Medicare and Medicaid regulations and discuss long-term care and supplemental Medicare insurance are essential for families new to these programs.

Look for expert authors-social workers, psychologists, and others experienced in working with older adults and their families. Caregivers often include in their books reassuring personal anecdotes and useful practical tips, although they may lack the credentials and depth of experience of geriatric professionals. Anthologies of inspirational readings will offer small spots of comfort during a caregiver's busy day.

Caregiving titles are available from both larger houses like Wiley and the American Medical Association and small presses like Elder Books. Self-published books occasionally produce useful materials on specialized topics (e.g., activities for people with memory disorders) not readily available elsewhere, but check author credentials before purchasing. Also, be careful about discarding older books; although the resource lists can quickly become outdated, the basic how-to advice often remains useful.

Periodicals for family care providers are few. There is the Caregiving newsletter (m. $29.95. Tad Pub. Co., PO Box 224, Park Ridge, IL 60068), produced by the creator of www.caregiving.com. Some general interest magazines (Prevention, Family Circle, Reader's Digest) carry features about parent care, and senior publications like Modern Maturity and New Choices cover senior health and legal and financial issues.

Because of their currency, readability, and affordability, pamphlets are an important part of a caregiving collection. Several web sites listed here have brochures available for downloading or that can be ordered online. Also, check your state's department of aging for free or inexpensive materials. Metropolitan Life Insurance Company's MetLife Mature Market Institute (MMI_MetLife@metlife.com) publishes Resources for Caregivers, a free, regularly updated guide to services, financial and legal resources, government agencies, and books and pamphlets. The Alzheimer's Association (www.alz.org) publishes a variety of resources on memory disorders as does the National Institute on Aging's Alzheimer's Disease Education and Referral Center (ADEAR) (www.alzheimers.org).

Don't forget videos, which can demonstrate at-home tasks (bed-making, dressing, bathing) and explore the emotional and psychological aspects of caregiving. Consumer health videos on common senior medical conditions are also useful. Fanlight Productions (www.fanlight.com), Terra Nova Films (www.terranova.org), and the University of South Florida's Suncoast Gerontology Center (www.med.usf.edu/suncoast/alzheimer/publicat.htm) offer a good selection.

The Internet is a treasure chest of excellent information on aging and caregiving. Besides the sites listed below, check out the Social Security Administration (www.ssa.gov) and the Department of Veterans Affairs (www.va.gov).

Starred [*] items are essential for most collections.

CAREGIVING 101

*American Medical Association Guide to Home Caregiving. Wiley. 2001. 242p. ed. by Angela Perry, M.D. illus. index. ISBN 0-471-41409-3. pap. $14.95.

*Caregiving Sourcebook. Omnigraphics. (Health Reference). 2001. 601p. ed. by Joyce Brennfleck Shannon. index. ISBN 0-7808-0331-0. $78.

*Cason, Ann. Circles of Care: How To Set Up Quality Home Care for Our Elders. Shambhala, dist. by Random. 2001. 192p. bibliog. ISBN 1-57062-471-2. pap. $14.95.

*The Essential Medication Guidebook to Healthy Aging: Your Easy-To-Use Reference to Medications Taken for Common Conditions. Ballantine. 2001. 833p. ed. by Les Paul & Becky Nagle. index. ISBN 0-345-45137-6. pap. $18.95.

*Rhodes, Linda Colvin. The Complete Idiot's Guide to Caring for Aging Parents. Alpha: Macmillan. 2000. 360p. index. ISBN 0-02-863943-X. pap. $16.95.

*Wei, Jeanne & Sue Levkoff. Aging Well: The Complete Guide to Physical and Emotional Health. Wiley. 2000. 373p. bibliog. index. ISBN 0-471-32678-X. $29.95; pap. ISBN 0-471-08206-6. $17.95.

ALZHEIMER'S CAREGIVING

Castleman, Michael & others. There's Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer's. Perigee: Putnam. 2000. 370p. bibliog. index. ISBN 0-399-52635-8. pap. $14.95. (LJ 12/99)

FitzRay, B.J. Alzheimer's Activities: Hundreds of Activities for Men and Women with Alzheimer's Disease and Related Disorders. Rayve Prods. 2001. 250p. bibliog. index. ISBN 1-877810-80-0. $19.95.

*Mace, Nancy L. & Peter V. Rabins, M.D. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. 3d rev. ed. Johns Hopkins. 1999. 339p. bibliog. index. ISBN 0-8018-6148-9. $44; pap. ISBN 0-8018-6149-7 $13.95. (LJ 7/99)

Roche, Lyn. Coping with Caring: Daily Reflections for Alzheimer's Caregivers. Elder Bks. 1996. 370p. index. ISBN 0-943873-29-0. pap. $11.95.

*Warner, Mark L. The Complete Guide to Alzheimer's-Proofing Your Home. rev. ed. Purdue Univ. 2000. 470p. illus. index. ISBN 1-55753-202-8. pap. $24.95. (LJ 10/15/98)

The American Bar Association Legal Guide for Older Americans: The Law Every American Over Fifty Needs To Know. Three Rivers: Crown. 1998. 272p. index. ISBN 0-8129-2937-3. pap. $13.

Bove, Alexander A., Jr. The Medicaid Planning Handbook: A Guide to Protecting Your Family's Assets from Catastrophic Nursing Home Costs. 2d ed. Little, Brown, 1996. 208p. index. ISBN 0-316-10374-8. pap. $12.95.

Johnson, Anne M. & Ruth Rejnis. The Cost of Caring: Money Skills for Caregivers. Wiley. (Personal Finance Solutions). 1998. 260p. index. ISBN 0-471-23925-9. pap. $14.95.

*Lieberman, Trudy & Consumer Reports Eds. Consumer Reports Guide to Health Services for Seniors. Three Rivers: Crown. 2000. 592p. index. ISBN 0-8129-3147-5. pap. $19.95. (LJ 12/00)

NURSING HOMES & HOUSING

*Bornstein, Robert & Mary A. Languirand. When Someone You Love Needs Nursing Home Care: The Complete Guide. Newmarket. 2001. 288p. index. ISBN 1-55704-473-2. $24.95. (LJ 10/15/01)

Bua, Robert N. The Inside Guide to America's Nursing Homes: Ranking and Ratings for Every Nursing Home in the U.S.; 1998-1999 Edition. Warner. 1997. 1344p. ISBN 0-446-67308-0. pap. $24.

Morse, Sarah & Donna Quinn Robbins. Moving Mom and Dad! Why, Where, How and When To Help Your Parents Relocate. 2d ed. Celestial Arts. (Lanier Guides). 1998. 250p. illus. index. ISBN 0-89087-868-4. pap. $19.95.

Sandell, Diane S. & Lois Hudson. Ending Elder Abuse: A Family Guide. QED. 2000. 204p. illus. index. ISBN 0-936609-41-9. pap. $16.95.

CARE FOR THE CAREGIVER

*Berman, Claire: Caring for Yourself While Caring for Your Aging Parents: How To Help, How To Survive. rev. ed. Holt. 2001. 255p. bibliog. index. ISBN 0-8050-3734- 9. pap. $16. (LJ 2/1/96)

Dutiful Daughters: Caring for Our Parents as They Grow Old. Seal. 1999. 288p. ed. by Jean Gould. ISBN 1-58005-026-3. pap. $16.95. (LJ 9/15/99)

Lebow, Grace & Barbara Kane with Irwin Lebow. Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children. Avon. 1999. 203p. bibliog. ISBN 0-380-79750-X. pap. $12.

McLeod, Beth Witrogen. Caregiving: The Spiritual Journey of Love, Loss, and Renewal. Wiley. 1999. 264p. bibliog. index. ISBN 0-471-35795-2. $22.95; pap. ISBN 0-471-39217. $14.95.

Dress Him While He Walks: Behavior Management in Caring for Residents with Alzheimer's Disease. color. 20 min. Fanlight Prods., 4196 Washington St., Suite 2, Boston, MA 02131; 800-937-4113; www.fanlight.com. 2000. ISBN 1-57295-311-X. $139.

Home Nursing Care: A Practical Guide for Family Caregivers. color. 58 min. AYA Inc., PO Box 11162, Arlington, VA 22210; 888-874-4898. 1999. ISBN 0-9676544-0-8. $89.95. (LJ 6/1/00)

When Your Parent Needs You: Positive Aspects of Caregiving. color. 35 min. Paraclete Pr., PO Box 1568, Orleans, MA 02653; 800-451-5006; www.paracletepress. com. 2001. ISBN 1-55725-277-7. $79.95.

WEB SITES

*AARP
www.aarp.org

Because We Care: A Guide for People Who Care
www.aoa.gov/wecare

BenefitsCheckUp
www.benefitscheckup.org

*Caregiving.com
www.caregiving.com

*Eldercare Locator
www.eldercare.gov

First Gov for Seniors
seniors.gov

*Medicare
www.medicare.gov
Also visit the Centers for Medicare & Medicaid Services (formerly the Health Care Finance Administration) at www.cms.gov.

*National Alliance for Caregiving
www.caregiving.org

National Family Caregivers Association
www.nfcacares.org

NeedyMeds
www.needymeds.com

United Seniors Health Council
www.unitedseniorshealth.org