powerpoint presentation

HEALTH INFORMATION FOR 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

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 35 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 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 RhondaJ.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

• 65,000,000 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

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 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=17042March 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

cComputer Literacy

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

Levels of Literacy

Proficient

Intermediate

Basic

Below Basic

from National Assessment of Adult Literacy (2003)

52%

12%

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.

The New Literacy !

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 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 Home site

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

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/AVo Ease of use; familiar formato Reinforces multiple learning styleso One-time expenditure (standing orders for time-sensitive

info)o Can take home and read/view at leisureo Doesn’t require computer, Internet, broadband

• Disadvantages of print/AVo Become outdated quicklyo Require space and hardware supporto Evaluation process neededo Library processing and maintenance costs

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 El

dercare

booklist (Health Sciences Library Association of New Jersey)

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/

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

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

• 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

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

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

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

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:

• 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…

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)

Caregiving Toolkit

Librarians are first responders for information!

What’s in your caregiving toolkit?

Coming soon:--- Online training

--- Web location

Caregiving Toolkit

Visit the ElderCare Delicious account for more Web links: http://delicious.com/ElderCaring

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 35 7 10

Wrap Up

• Please fill out an evaluation before you leave.• Cheryl Becker

Public Library Administration ConsultantSouth Central Library System608.246.7973cbecker@scls.lib.wi.us

• Ulrike DieterleOutreach CoordinatorEbling Library, UW-Madison608.262.8025udieterle@wisc.edu

• Brian Finnegan Reference Librarian

Marshfield Clinic715.389.5272

Finnegan.brian@marshfieldclinic.org