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Engaging guide for caregivers & libraries on elderly caregiving, resources, services, & programming ideas. Evaluate & address community needs for improved support.
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HEALTH INFORMATIONFOR THE ELDERLY AND THEIR CAREGIVERS Brought to you by: the South Central Library System through a 2009 LSTA Grant April 2009
Workshop in 5 Parts • Part 1 - Introduction • Part 2 - Overview of Caregiving/Caregivers • Part 3 - Information Resources • Part 4 - Sample searches • Part 5 - External Resources/Services
On a scale of 1-10, what is your current comfort level with helping the public with questions about adult caregiving? (whether the question(s) is from the caregiver or the recipient) 3 7 10 1 5 Workshop Introduction – Part 1
Provide overview of caregiving for the elderly • Identify information resources about caregiving • Identify resources for public library collections • Discuss extended services available • Identify programming ideas and resources • Solicit input for content of caregiving toolkit • Evaluate impact of workshop on practice Workshop Goals are to:
What did your surveys tell us? • 51% of you receive related questions on a monthly basis • You get questions about: • Specific illnesses 87% • Drugs/medications 61% • Finding assistance 58% • Medicare/Medicaid 46% • Others …
What did your surveys tell us? • You wish you had more: • Legal information, esp. Wisconsin specific • One-stop shopping for information • State, county and local resources • Medicare/Medicaid information • Senior-friendly Web resources • Books and AVs • Programming for staff
Defining Caregiving/Caregivers • Anyone who provides help to another person in need • People NOT paid to provide care are known as informal caregivers or family caregivers. • Most common type of informal caregiving relationship is an adult child caring for an elderly parent • Caregivers help with many things. Can you add to this definition? FAQ : http://www.womenshealth.gov/faq/caregiver-stress.cfm#a
7 STAGES IN A CAREGIVING CAREER • STAGE 1 – Performing caregiving tasks • STAGE 2 – Self-definition as a caregiver • STAGE 3 – Performing personal care • STAGE 4 – Seeking assistance and formal service use • STAGE 5 – Consideration of nursing home placement • STAGE 6 – Institutionalization • STAGE 7 – Termination of the caregiving role • *adapted from the "Seven Markers in the Caregiving Trajectory" by Rhonda • J.V. Montgomery, Ph.D. Director ,Gerontology Center , University of Kansas
It’s a complicated question¹ • About 34% age 18 years and older are currently providing or have provided in the past year some type of caregiving assistance² • 65,000,000 people age 18 and older in the United States² • America's family caregivers are family, friends, partners, and neighbors¹ Who are the caregivers? ¹ http://www.nfcacares.org/who_are_family_caregivers/ ² http://www.nfcacares.org/pdfs/AARPSurveyFinal.pdf
Most Americans will be informal caregivers at some point during their lives • 44 million Americans (21% of the adult population) provide unpaid care to an elderly or disabled person 18 years or older • Informal caregivers provide 80 percent of the long-term care in the United States Who are the caregivers? FAQ : http://www.womenshealth.gov/faq/caregiver-stress.cfm#a
61% of caregivers are women • 51% have jobs in addition to caring for another person • Most caregivers are middle-aged • 13% of caregivers are aged 65 years and older • More than half of employed women caregivers adjust their lives to accommodate needs Who are the caregivers? FAQ : http://www.womenshealth.gov/faq/caregiver-stress.cfm#a
Estimates of Future Demand for Long-Term Care(in millions) SOURCE: 1994 National Health Interview Survey, 2001 Census population projections. For the Institutional Population: 1998 Residential Information Systems Project, 1996 Medical Expenditure Panel Survey http://aspe.hhs.gov/daltcp/reports/ltcwork.htm
Demand for Unpaid Informal Caregivers in Relation to Formal Paid Care (in millions) SOURCE: The National Health Interview Survey, 1994. Estimates based from the National Long-Term Care Survey Caregiver Supplement, 1989, and the National Health Interview Survey, 1994. http://aspe.hhs.gov/daltcp/reports/ltcwork.htm
80% who need long-term care (LTC) services live at home or in community settings, not in institutions1 • 78% of adults receiving LTC at home get all their care from unpaid family and friends1 • 9 out of 10 elderly prefer to stay in own home2 Who Receives the Care? 1http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1704 2March 2009 AARP Bulletin
Boomers and Parents http://aspe.hhs.gov/daltcp/reports/ltcwork.htm
Areas of Caregiving include: • Personal Care • Household Care • Health Care • Emotional Care • Supervision
Activities by Caregiver’s Age http://www.nfcacares.org/pdfs/AARPSurveyFinal.pdf
Barriers to Health Information • Language difficulties • Technical terminology • Minimal or non-existent computer skills • Access to information • Cultural/Generational differences • Debilitating conditions or illness • Cognitive impairment • Low health information literacy
Health InformationGAP 20% of American adults read at or below 5th grade level Most specialized materials are written at 10th grade level or higher National Institute for Literacy, Fast Facts on Literacy, 2001
Levels of Literacy from National Assessment of Adult Literacy (2003) 12% 52% 22% 14% 36% at RISK Proficient Intermediate Basic Below Basic
“… the set of abilities needed to: recognize a health information need; identify likely information sources and use them to retrieve relevant information; assess the quality of the information and its applicability to a specific situation; and analyze, understand, and use the information to make good health decisions.” Medical Library Association. (July 23, 2003) What is Health Info Literacy?
What is Computer Literacy? Ability to use computers/technology effectively to locate, organize, evaluate, store and create information. The New Literacy !
Who is NOT Using the Internet? http://www.pewinternet.org/pdfs/PIP_Generations_2009.pdf
Seniors! Who are They? What does it mean to be old? (video clip) Let’s take a brief break!
Information – for You and Your Patrons • Medical Terminology • Gateways, Portals and Search Engines • Specialized Databases • Print and AV materials • Local, Regional and State Resources • Information Tools
Medical Terminology • MedlinePlus Medical Dictionary – Online • Deciphering MedSpeak – (Medical Library Association) • Medical Library Association brochures– (MLA) • Medical Shorthand Solved– (MLA) • Stedman's Medical Dictionary – Online • Merck Manual – Pronunciations • Glossary from Almost Homesite
Websites – Selected Gateways, Portals, Search EnginesHealth Information Resources • NIH SeniorHealth • MedlinePlus • MayoClinic.com • NLM Gateway • National Institute on Aging • BadgerLink • Google Scholar • PubMed/MEDLINE
The Gale encyclopedia of senior health : a guide for seniors and their caregivers Aging families and caregiving The Gale encyclopedia of surgery and medical tests : a guide for patients and caregivers The real truth about aging : a survival guide for older adults and caregivers Aging Families and Caregiving Answers to the Health Questions People Ask in Libraries (Medical Library Association Guides) Answering Consumer Health Questions: The Medical Library Association Guide for Reference Librarians (Medical Library Association Guides) The Cornell Illustrated Medical Encyclopedia Reference Bookshelf Selected Titles
Print & AVHealth Information Resources • Advantages of print/AV • Ease of use; familiar format • Reinforces multiple learning styles • One-time expenditure (standing orders for time-sensitive info) • Can take home and read/view at leisure • Doesn’t require computer, Internet, broadband • Disadvantages of print/AV • Become outdated quickly • Require space and hardware support • Evaluation process needed • Library processing and maintenance costs
Print & AVHealth Information Resources • NLM Gateway search • (caregiver* OR caregiving) AND (elderly OR aged) • WorldCat search • LINKcat • Other library catalogs • Amazon • Recommended Consumer Health Books on Aging and Eldercare booklist (Health Sciences Library Association of New Jersey)
Print & AVHealth Information Resources Selected Documentary/DVD Titles: • Almost Home • http://www.almosthomedoc.org/ • Caring for your Parents • http://www.pbs.org/wgbh/caringforyourparents/watchonline/index.html • The Forgetting: a Portrait of Alzheimer’s • http://www.pbs.org/theforgetting/ • Young@Heart • http://www.foxsearchlight.com/youngatheart/
Print & AVHealth Information Resources Feature Films: • Away from Her • On Golden Pond • The Savages • Cocoon • Evening • The Trip to Bountiful • Driving Miss Daisy
Specialized Resources • Cancer • Mental Health • Nutrition • Drugs/Medication • National Sites • State/Local Resources • Information Tools • Other…
Specialized Websites – CancerHealth Information Resources • Cancer.Net • Wellness Community • American Cancer Society • Prostate Cancer Foundation • Susan G. Komen for the Cure • Breast Cancer Network of Strength – includes information in several languages • Dr. Susan Love Research Foundation • Agency for Healthcare Research and Quality – stages of breast cancer • Food and Drug Administration • National Comprehensive Cancer Network • National Cancer Institute
Specialized Websites – Mental HealthHealth Information Resources • NOAH – Mental Health • Mental Health Links – Elderly • American Psychological Association Help Center • Mental Health America (formerly National Mental Health Association) • Wisconsin United for Mental Health – Older Adults • Healthy Minds – American Psychiatric Association • National Mental Health Information Center – samhsa • National Institute of Mental Health
Specialized Websites – NutritionHealth Information Resources • USDA Nutrition for Older Adults • CDC Nutrition Topics • Good Nutrition for Aging Individuals (NIA) • American Dietetic Association (ADA) • USDA National Nutrient Database • Healthy People 2010 Nutrition and Overweight Objectives • Food Guide Pyramid