HEALTH INFORMATION
FOR THE
ELDERLY AND THEIR
CAREGIVERS
Brought to you by:
the South Central Library System through a 2009...
Workshop in 5 Parts
 Part 1 - Introduction
 Part 2 - Overview of
Caregiving/Caregivers
 Part 3 - Information Resources
...
WORKSHOP INTRODUCTION – PART 1
• On a scale of 1-10, what is your current
comfort level with helping the public with
quest...
WORKSHOP GOALS ARE TO:
• Provide overview of caregiving for the elderly
• Identify information resources about caregiving
...
What did your surveys tell us?
51% of you receive related questions on a monthly
basis
You get questions about:
Specific ...
What did your surveys tell us?
You wish you had more:
 Legal information, esp. Wisconsin specific
 One-stop shopping for...
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 are ...
7 STAGES IN A CAREGIVING CAREER
• STAGE 1 – Performing caregiving tasks
• STAGE 2 – Self-definition as a caregiver
• STAGE...
WHO ARE THE CAREGIVERS?
• It’s a complicated question¹
• About 34% age 18 years and older are currently
providing or have ...
WHO ARE THE CAREGIVERS?
• Most Americans will be informal caregivers at
some point during their lives
• 44 million America...
WHO ARE THE CAREGIVERS?
• 61% of caregivers are women
• 51% have jobs in addition to caring for another
person
• Most care...
Estimates of Future Demand for Long-
Term Care (in millions)
SOURCE: 1994 National Health Interview Survey, 2001 Census po...
Demand for Unpaid Informal Caregivers
in Relation to Formal Paid Care (in millions)
SOURCE: The National Health Interview ...
WHO RECEIVES THE CARE?
• 80% who need long-term care (LTC) services
live at home or in community settings, not in
institut...
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
•...
c
Health
Information
Literacy
Health Literacy
Information
Literacy
Basic
Literacy
Computer Literacy
Health Information
GAP
 20% of American
adults read
at or below
5th grade level
 Most specialized
materials
are written ...
Levels of Literacy
 Proficient
 Intermediate
 Basic
 Below Basic
from National Assessment of Adult Literacy (2003)
52%...
WHAT IS HEALTH INFO LITERACY?
“… the set of abilities needed to: recognize a
health information need; identify likely info...
What is Computer Literacy?
Ability to use computers/technology effectively to
locate, organize, evaluate, store and create...
http://www.pewinternet.org/pdfs/PIP_Generations_2009.pdf
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 Resources – Part 3
Information – for You and Your Patrons
• Medical Terminology
• Gateways, Portals and Search Engines
• Specialized Database...
Medical Terminology
• MedlinePlus Medical Dictionary – Online
• Deciphering MedSpeak – (Medical Library Association)
• Med...
Websites – Selected Gateways, Portals, Search Engines
Health Information Resources
• NIH SeniorHealth
• MedlinePlus
• Mayo...
Print & AV
Health Information Resources
Reference Bookshelf
Selected Titles
 The Gale encyclopedia of senior health : a guide for seniors and their caregivers
 ...
Print & AV
Health Information Resources
• Advantages of print/AV
o Ease of use; familiar format
o Reinforces multiple lear...
Print & AV
Health Information Resources
• NLM Gateway search
o (caregiver* OR caregiving) AND (elderly OR aged)
• WorldCat...
Print & AV
Health Information Resources
Selected Documentary/DVD Titles:
 Almost Home
 http://www.almosthomedoc.org/
 C...
Print & AV
Health Information Resources
Feature Films:
 Away from Her
 On Golden Pond
 The Savages
 Cocoon
 Evening
...
Specialized Resources
• Cancer
• Mental Health
• Nutrition
• Drugs/Medication
• National Sites
• State/Local Resources
• I...
Specialized Websites – Cancer
Health Information Resources
• Cancer.Net
• Wellness Community
• American Cancer Society
• P...
Specialized Websites – Mental Health
Health Information Resources
• NOAH – Mental Health
• Mental Health Links –Elderly
• ...
Specialized Websites – Nutrition
Health Information Resources
• USDA Nutrition for Older Adults
• CDC Nutrition Topics
• G...
Specialized Websites – Medications/Drugs
Health Information Resources
• DrugDigest
• NLM Drug Information Portal
• U.S. FD...
Specialized Websites – National Sites
Health Information Resources
• AARP – Health
• National Institute on Aging
• Adminis...
Specialized Websites – State and Local Sites
Health Information Resources
 State Units on Aging
 Coalition of WI Aging G...
Legal Issues
• Power of Attorney – NOLO Press Online
• Wills & Trusts & Estate Planning – NOLO Press Online
• Guardians & ...
Medicare/Medicaid + Social
Security
 Wisconsin Social Security Offices
 Social Security Online – Calculators
 Medicare ...
Information Tools
• Caregiver Readiness Quiz
• BMI Calculator
• How to Read a Drug Label
• Drug Interactions
• Diabetes Qu...
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 ...
Patron Asks…
A patron comes into the library looking very
distraught. He explains he is the sole
caregiver for his elderly...
Patron Asks…
A patron explains that her doctor has suggested
she draw up advance directives for her
terminally ill mother,...
External Support – Part 5
• Reach beyond your library
• Investigate document delivery/ILL options
• Utilize medical/specia...
Make Referrals to:
• AskAway
• Ebling Library, UW-Madison
• University/College campuses
• Libraries at local healthcare or...
Awareness & Education
• Helping Older Adults Search for Health
Information Online: A Toolkit for Trainers
• Medicare Part ...
Caregiving Toolkit
Librarians are first responders for
information!
What’s in your caregiving toolkit?
Coming soon:
--- O...
Q & A …
On a scale of 1-10, how would you NOW rate
your comfort level on helping the public with
questions about adult car...
Wrap Up
• Please fill out an evaluation before you leave.
• Cheryl Becker
Public Library Administration Consultant
South C...
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    1. 1. HEALTH INFORMATION FOR THE ELDERLY AND THEIR CAREGIVERS Brought to you by: the South Central Library System through a 2009 LSTA Grant April 2009
    2. 2. 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
    3. 3. 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
    4. 4. 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
    5. 5. 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 …
    6. 6. 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
    7. 7. Caregivers and Caregiving– Part 2
    8. 8. Issues – Today and in the Future
    9. 9. 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
    10. 10. 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
    11. 11. 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 • 65,000,000 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/AARPSurveyFinal.pdf
    12. 12. 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
    13. 13. 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
    14. 14. 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
    15. 15. 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
    16. 16. WHO RECEIVES THE CARE? • 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 1http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1704 2March 2009 AARP Bulletin
    17. 17. Boomers and Parents http://aspe.hhs.gov/daltcp/reports/ltcwork.htm
    18. 18. Areas of Caregiving include: • Personal Care • Household Care • Health Care • Emotional Care • Supervision
    19. 19. Activities by Caregiver’s Age http://www.nfcacares.org/pdfs/AARPSurveyFinal.pdf
    20. 20. 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
    21. 21. c Health Information Literacy Health Literacy Information Literacy Basic Literacy Computer Literacy
    22. 22. Health Information GAP  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
    23. 23. Levels of Literacy  Proficient  Intermediate  Basic  Below Basic from National Assessment of Adult Literacy (2003) 52% 12% 22% 14% 36% at RISK
    24. 24. 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)
    25. 25. What is Computer Literacy? Ability to use computers/technology effectively to locate, organize, evaluate, store and create information.
    26. 26. http://www.pewinternet.org/pdfs/PIP_Generations_2009.pdf Who is NOT Using the Internet?
    27. 27. http://www.pewinternet.org/pdfs/PIP_Generations_2009.pdf
    28. 28. Seniors! Who are They? What does it mean to be old? (video clip) Let’s take a brief break!
    29. 29. Information Resources – Part 3
    30. 30. 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
    31. 31. 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 Home site
    32. 32. Websites – Selected Gateways, Portals, Search Engines Health Information Resources • NIH SeniorHealth • MedlinePlus • MayoClinic.com • NLM Gateway • National Institute on Aging • BadgerLink • Google Scholar • PubMed/MEDLINE
    33. 33. Print & AV Health Information Resources
    34. 34. 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
    35. 35. Print & AV Health Information Resources • Advantages of print/AV o Ease of use; familiar format o Reinforces multiple learning styles o 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 • Disadvantages of print/AV o Become outdated quickly o Require space and hardware support o Evaluation process needed o Library processing and maintenance costs
    36. 36. Print & AV Health Information Resources • NLM Gateway search o (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)
    37. 37. Print & AV Health 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/
    38. 38. Print & AV Health Information Resources Feature Films:  Away from Her  On Golden Pond  The Savages  Cocoon  Evening  The Trip to Bountiful  Driving Miss Daisy
    39. 39. Specialized Resources • Cancer • Mental Health • Nutrition • Drugs/Medication • National Sites • State/Local Resources • Information Tools • Other…
    40. 40. 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
    41. 41. Specialized Websites – Mental Health 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
    42. 42. 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
    43. 43. Specialized Websites – Medications/Drugs Health Information Resources • DrugDigest • 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
    44. 44. Specialized Websites – National Sites Health Information Resources • AARP – Health • National Institute on Aging • Administration on Aging • Aging and Disabilities Services Administration • National Alliance for Caregiving • National Family Caregiver Association • Centers for Disease Control & Prevention – Aging • Veterans Health Administration Home
    45. 45. Specialized Websites – State and Local Sites Health Information Resources  State Units on Aging  Coalition of WI Aging Groups  Services for the Elderly – WI DHS  Wisconsin Nursing Homes  Medicare.gov - Nursing Home Compare  Wisconsin Alliance for Family Caregiving  Care Wisconsin  Aging & Disability Resource Ctr – Portage Co.  Dane County Senior Services  Area Agency on Aging - Dane
    46. 46. 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 (MedlinePlus) • ElderLawAnswers
    47. 47. 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
    48. 48. 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
    49. 49. Let’s Take a Few Senior Moments!  Having Respect And Reverence For The Elderly (video)
    50. 50. Let’s take a brief break!
    51. 51. Sample Searches – Part 4 Let’s practice …
    52. 52. 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?
    53. 53. 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?
    54. 54. 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?
    55. 55. 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
    56. 56. Make Referrals to: • AskAway • 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…
    57. 57. 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 • Caregivers Guide to Medications • Geriatrics and Gerontology Videos (UW-Madison)
    58. 58. Caregiving Toolkit Librarians are first responders for information! What’s in your caregiving toolkit? Coming soon: --- Online training --- Web location Visit the ElderCare Delicious account for more Web links: http://delicious.com/ElderCaring
    59. 59. 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
    60. 60. 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

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