HEALTH INFORMATION FOR THE ELDERLY AND THEIR CAREGIVERS

HEALTH INFORMATION FOR THE ELDERLY AND THEIR CAREGIVERS April 2009 Brought to you by: the South Central Library System through a 2009 LSTA Grant

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

WORKSHOP INTRODUCTION – PART 1 • 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) 1 3 5 7 10

WORKSHOP GOALS ARE TO: • 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

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

Caregivers and Caregiving– Part 2

Issues – Today and in the Future

Defining Caregiving/Caregivers • Anyone who provides help to another person in need • People NOT paid to provide care 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

WHO ARE THE CAREGIVERS? • 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 people age 18 and older in the United States² • America's family caregivers are family, friends, partners, and neighbors¹ ¹ http: //www. nfcacares. org/who_are_family_caregivers/ ² http: //www. nfcacares. org/pdfs/AARPSurvey. Final. pdf

WHO ARE THE CAREGIVERS? • 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 FAQ : http: //www. womenshealth. gov/faq/caregiver-stress. cfm#a

WHO ARE THE CAREGIVERS? • 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 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

WHO RECEIVES THE CARE? • 80% who need long-term care (LTC) services live at home or in community settings, not in institutions 1 • 78% of adults receiving LTC at home get all their care from unpaid family and friends 1 • 9 out of 10 elderly prefer to stay in own home 2 1 http: //www. caregiver. org/caregiver/jsp/content_node. jsp? nodeid=1704 2 March 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/AARPSurvey. Final. 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

Computer Literacy c Health Information Literacy Health Literacy Information Literacy Basic Literacy

Health Information GAP 20% of American adults read at or below 5 th grade level National Institute for Literacy, Fast Facts on Literacy, 2001 Most specialized materials are written at 10 th grade level or higher

Levels of Literacy from National Assessment of Adult Literacy (2003) Proficient 12% Intermediate 52% Basic Below Basic 22% 14% 36% at RISK

WHAT IS HEALTH INFO LITERACY? “… 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 Computer Literacy? Ability to use computers/technology effectively to locate, organize, evaluate, store and create information. T w e N e h e t i L ! y c a r

Who is NOT Using the Internet? http: //www. pewinternet. org/pdfs/PIP_Generations_2009. pdf

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 Resources – Part 3

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 • Medline. Plus Medical Dictionary – Online • Deciphering Med. Speak – (Medical Library Association) • Medical Library Association brochures – (MLA) • Medical Shorthand Solved – (MLA) • Stedman's Medical Dictionary – Online • Merck Manual – Pronunciations • Glossary from Almost Home site

Websites – Selected Gateways, Portals, Search Engines Health Information Resources • NIH Senior. Health • Medline. Plus • Mayo. Clinic. com • NLM Gateway • National Institute on Aging • Badger. Link • Google Scholar • Pub. Med/MEDLINE

Print & AV Health Information Resources

Reference Bookshelf Selected Titles 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

Print & AV Health Information Resources • Advantages of print/AV Ease of use; familiar format Reinforces multiple learning styles One-time expenditure (standing orders for time-sensitive info) o Can take home and read/view at leisure o Doesn’t require computer, Internet, broadband o o o • Disadvantages of print/AV o o Become outdated quickly Require space and hardware support Evaluation process needed Library processing and maintenance costs

Print & AV Health Information Resources • NLM Gateway search o (caregiver* OR caregiving) AND (elderly OR aged) • World. Cat search • LINKcat • Other library catalogs • Amazon • Recommended Consumer Health Books on Aging and Eldercare booklist (Health Sciences Library Association of New Jersey)

Print & AV Health Information Resources Selected Documentary/DVD Titles: Almost Home Caring for your Parents http: //www. pbs. org/wgbh/caringforyourparents/watchonline/index. html The Forgetting: a Portrait of Alzheimer’s http: //www. almosthomedoc. org/ http: //www. pbs. org/theforgetting/ Young@Heart http: //www. foxsearchlight. com/youngatheart/

Print & AV Health 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 – Cancer Health 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 Health 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 – Nutrition Health 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

Specialized Websites – Medications/Drugs Health Information Resources • Drug. Digest • NLM Drug Information Portal • U. S. FDA – Center for Drug Evaluation and Research • US Pharmacopeia • TOXNET – National Library of Medicine • UW-Madison Ebling Library Pharmacy Resources • RXList – Internet Drug Index • Medicare Part D – NOLO Press Online

Specialized Websites – National Sites Health Information Resources • • AARP – Health National Institute on Aging Administration on Aging and Disabilities Services Administration National Alliance for Caregiving National Family Caregiver Association Centers for Disease Control & Prevention – Aging Veterans Health Administration Home

Specialized Websites – State and Local Sites Health Information Resources State Units on Aging q Coalition of WI Aging Groups q Services for the Elderly – WI DHS q Wisconsin Nursing Homes q Medicare. gov - Nursing Home Compare q Wisconsin Alliance for Family Caregiving q Care Wisconsin q Aging & Disability Resource Ctr – Portage Co. q Dane County Senior Services q Area Agency on Aging - Dane q

Legal Issues • • Power of Attorney – NOLO Press Online Wills & Trusts & Estate Planning – NOLO Press Online Guardians & Conservators – NE site Finding an elder law attorney – WI Bar Advance Directives, Part 1 (online video) Advance Directives, Part 2 (online video) Advance Directives (Medline. Plus) Elder. Law. Answers

Medicare/Medicaid + Social Security Wisconsin Social Security Offices Social Security Online – Calculators Medicare Home Page Medicare Part D – NOLO Press Online Medicare Prescription Coverage Wisconsin Medicaid Home Page

Information Tools • • Caregiver Readiness Quiz BMI Calculator How to Read a Drug Label Drug Interactions Diabetes Quiz Eldercare Locator AHA’s Heart 360 Activity and Menu Planners

Let’s Take a Few Senior Moments! Having Respect And Reverence For The Elderly (video)

Let’s take a brief break!

Sample Searches – Part 4 Let’s practice …

Patron Asks… A patron comes into the library looking very concerned and confused. She explains that her elderly mother is taking a number of drugs and supplements daily. She is looking for a trustworthy resource that would provide more information about each substance, explain any side effects and list negative interactions. She has spent considerable time searching the Web, but is skeptical about what she is finding. Which resource(s) would you recommend?

Patron Asks… A patron comes into the library looking very distraught. He explains he is the sole caregiver for his elderly father, who has been diagnosed with early stage Alzheimer’s. He is looking for trustworthy resource about locally available help to care for his father. He would like to know what care facilities are available in this area, whether Medicare would cover costs and what changes he can expect to encounter in his father’s health. Which resource(s) would you recommend?

Patron Asks… A patron explains that her doctor has suggested she draw up advance directives for her terminally ill mother, who is still living in her own home and caring for herself. She knows, however, that time is short and wants to prepare for her mother’s deteriorating health. Where would she find trustworthy information about advance directives and other information related to end-of -life care? Which resource(s) would you recommend?

External Support – Part 5 • • • Reach beyond your library Investigate document delivery/ILL options Utilize medical/special library expertise Develop partnerships Develop programming/training for library staff Facilitate workshops for the public • • Training Speakers Films Discussions

Make Referrals to: • • Ask. Away Ebling Library, UW-Madison University/College campuses Libraries at local healthcare orgs & non-profits Wisconsin Health Science Library Assoc. Local, regional and state government Others…

Awareness & Education • Helping Older Adults Search for Health Information Online: A Toolkit for Trainers • Medicare Part D - Maximizing Your Benefits (UC Davis) • Caring for your Parents • Caregivers Guide to Medications • Geriatrics and Gerontology Videos (UW-Madison)

Caregiving Toolkit Librarians are first responders for information! What’s in your caregiving toolkit? Coming soon: --- Online training --- Web location Visit the Elder. Care Delicious account for more Web links: http: //delicious. com/Elder. Caring iv g e r a C t i i k l o o ng T

Q&A… On a scale of 1 -10, how would you NOW rate your comfort level on helping the public with questions about adult caregiving? 1 3 5 7 10

Wrap Up • Please fill out an evaluation before you leave. • Cheryl Becker Public Library Administration Consultant South Central Library System 608. 246. 7973 cbecker@scls. lib. wi. us • Ulrike Dieterle Outreach Coordinator Ebling Library, UW-Madison 608. 262. 8025 udieterle@wisc. edu • Brian Finnegan Reference Librarian Marshfield Clinic 715. 389. 5272 Finnegan. brian@marshfieldclinic. org