BRIEF OVERVIEW OF CAREGIVING RESOURCES

1
BRIEF OVERVIEW OF CAREGIVING RESOURCES

• JOSEPH E. GAUGLER, PH.D.
• ASSOCIATE PROFESSOR, MCKNIGHT PRESIDENTIAL FELLOW
  
• SCHOOL OF NURSING
• CENTER ON AGING
• THE UNIVERSITY OF MINNESOTA

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SPECIFIC AIMS

• Provide an overview of caregiving information
  resources
• Attempt to address questions posed by providers
  (Parish Nurses) that are commonly posed by
  families

3
ASSESSMENT

• Selected Caregiver Assessment Measures A
  Resource Inventory for Practitioners
  (http//www.caregiver.org/caregiver/jsp/content_no
  de.jsp?nodeid470)
• Czaja, S.J. et al. (2009). Development of the
  Risk Appraisal Measure (RAM) A brief screen to
  identify risk areas and guide interventions for
  dementia caregivers. Journal of the American
  Geriatrics Society, 57(6), 1064-1072. Available
  http//www.pubmedcentral.nih.gov/articlerender.fcg
  i?toolpubmedpubmedid19453305

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STAGING DEMENTIA

• Global Deterioration Scale-Adapted for Families
  

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ALZHEIMERS DISEASE EDUCATION AND REFERRAL CENTER

• Alzheimers Disease Education and Referral
  Center
• 1-800-438-4380
• Website http//www.nia.nih.gov/alzheimers
• Information resources available
• Alzheimers Disease Unravelling the Mystery
  http//www.nia.nih.gov/Alzheimers/Publications/Unr
  aveling
• Alzheimers Disease Fact Sheet http//www.nia.nih.
  gov/Alzheimers/Publications/adfact.htm
• Understanding Alzheimers Disease
  http//www.nia.nih.gov/Alzheimers/Publications/Und
  erstandingAD/
• Understanding Memory Loss http//www.nia.nih.gov/A
  lzheimers/Publications/UnderstandingMemoryLoss/
• Forgetfulness Age Page Knowing When to Ask for
  Help http//www.nia.nih.gov/HealthInformation/Publ
  ications/forgetfulness.htm

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ALZHEIMERS DISEASE EDUCATION AND REFERRAL CENTER

• Information resources available
• What Happens Next? (Early-Stage Dementia
  Resource) http//www.nia.nih.gov/Alzheimers/Public
  ations/WhatHappensNext.htm
• Progress Report on Alzheimers Disease 2007
  http//www.nia.nih.gov/Alzheimers/Publications/ADP
  rogress2007/
• Alzheimers Disease A Caregiver and Patient
  Resource List http//www.nia.nih.gov/Alzheimers/Pu
  blications/resourcelist.htm
• The Connections Newsletter http//www.nia.nih.gov/
  Alzheimers/Publications/resourcelist.htm

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ALZHEIMERS DISEASE EDUCATION AND REFERRAL CENTER

• Professional resources available
• Talking with Your Older Patient A Clinicians
  Handbook (http//www.nia.nih.gov/HealthInformation
  /Publications/ClinicianHB/)
• Speakers Kit Unraveling the Mystery (includes
  PowerPoints, CD-ROM) (http//www.nia.nih.gov/Alzhe
  imers/Publications/speakerskit.htm)
• The Growing Challenge of Alzheimers Disease in
  Residential Settings (http//www.nia.nih.gov/Alzhe
  imers/Publications/GrowingChallenge/)
• Other Training Programs (available to order)
  (http//www.niapublications.org/adearorder/shopdis
  playproducts.asp?id11catTrainingPrograms)
• Automated Literature Searches (http//www.alzheime
  rs.org/adlib/)

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CAREGIVER GUIDE
http//www.nia.nih.gov/Alzheimers/Caregiving/HomeA
ndFamily/
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DECISION MAKING TOOLS

• When should I make the decision to place a
  relative with Alzheimers disease or dementia in
  a nursing home?
• http//www.healthwise.net/preferredcare/Content/St
  dDocument.aspx?DOCHWIDaa58684SECHWIDaa58684-Int
  ro
• Should I take medications to treat Alzheimers
  disease?
• http//www.healthwise.net/preferredcare/Content/St
  dDocument.aspx?DOCHWIDty7566SECHWIDty7566-Intro
  
• The Minnesota Long-Term Care Navigator
• http//longtermcarechoices.minnesotahelp.info/
• Web-based solutions for caregivers (calendars,
  etc.)
• http//www.ihlcaregiver.com
• For a complete library of the decision aids from
  the Ottawa Health Research Institute, please see
  http//decisionaid.ohri.ca/index.html

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VARIOUS ONLINE RESOURCES

• Caregiver application for iPhone
• http//strengthforcaring.com/careconnector/index.h
  tml
• http//tenquestionstoanswer.org
• http//www.strengthforcaring.com
• http//www.blogcatalog.com/blogs/dementia-caregiv
  ers-toolbox/posts/tag/alzheimer27s/

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MORE INFORMATION

• The National Institute on Aging Information
  Center P.O. Box 80571-800-222-2225
  1-800-222-4225 (TTY)Web address
  www.nia.nih.gov
• The Simon Foundation for ContinenceP.O. Box 815
  Wilmette, IL 60091 1-800-237-4666Web address
  www.simonfoundation.org
• Well Spouse Association63 West Main Street,
  Suite HFreehold, NJ 077881-800-838-0879Web
  address www.wellspouse.org

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PARISH NURSE QUESTIONS

• Question 1 How will I know it is no longer safe
  to have Mom/Dad at home?
• Does he or she want to move? What about his or
  her spouse?
• Is your home adapted to support the person?
  (see http//www.alz.org/living_with_alzheimers_saf
  ety_issues.asp for a review of safety issues)
• Will someone be at home to care for the person?
  
• How does the rest of the family feel about the
  move?
• How will this move affect your job, family and
  finances?
• What respite services are available in your
  community to assist you?
• Also recommend So Far Away long-distance
  caregiving guide http//www.niapublications.org/pu
  bs/long-distance/index.asp from ADEAR
• In Minnesota, see also the Long-Term Care
  Navigator for recommended service options
  (http//longtermcarechoices.minnesotahelp.info/)
• (from http//www.alz.org/living_with_alzheimers_lo
  ng_distance_caregiving.asp5)

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PARISH NURSE QUESTIONS

• Question 2 Fear of heredity and family history
  of Alzheimers disease
• See above
• See also the Alzheimers Disease Genetics Fact
  Sheet from ADEAR (http//www.nia.nih.gov/Alzheime
  rs/Publications/geneticsfs.htm)

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PARISH NURSE QUESTIONS

• Question 3 How long will I be able to do these
  talks?
• For the forseeable future
• Alzheimers Disease What It Is And What Can Be
  Done
• Caregiving Tips
• Please feel free to contact me (contact
  information on the last slide) if you would like
  me to speak on these or other topics at your
  church, senior center, etc.

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PARISH NURSE QUESTIONS

• Question 4 Families getting local physicians
  to acknowledge symptoms- delayed diagnosis
• See the Visiting the doctor on the Alzheimers
  Association page regarding some tips on diagnosis
  and the doctor (http//www.alz.org/alzheimers_dise
  ase_visiting_with_your_physician.asp)
• See also the Partnering with your Doctor free
  booklet from the Alzheimers Association
  (http//www.alz.org/we_can_help_partnering_with_yo
  ur_doctor.asp)

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PARISH NURSE QUESTIONS

• Question 5 Need for respite support-Not paid
  for by insurance as caregivers experience
  burnout
• Review the ARCH (National Respite Network) home
  page (http//chtop.org/ARCH.html)
• Includes a respite locator (see also
  http//www.minnesotahelp.info see Senior Linkage
  Line above, as well)
• Also, principles of quality respite
• See also the respite fact sheet
  (http//www.archrespite.org/docs/FRIENDSfactsheet1
  4-Respite.pdf) which reviews who may need respite

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PARISH NURSE QUESTIONS

• Question 5 Spiritual component of Alzheimers
  disease for faith communities and individuals
• Some issues raised on the Mayo Clinic page
  (http//www.mayoclinic.com/health/alzheimers/AZ000
  24)
• Health and spirituality For caregivers and
  persons with AD (http//www.mayoclinic.com/health/
  stress-relief/SR00035)
• Small section on spirituality and end-of-life
  care (http//www.mayoclinic.com/health/cancer/CA00
  048)
• There is a nice list of resources from the
  Green-Field Library of the Alzheimers
  Association (I will email to those interested)

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PARISH NURSE QUESTIONS

• God and Alzheimer's a neurological reflection on
  religious experience, self, and soul. Post, S.G.
  http//www.parkridgecenter.org/Page482.html
• Spiritual traditions and aging. Iris, M.
  http//www.parkridgecenter.org/Page109.html
• Alternative solutions in long term care
  spirituality.Sparta, NJ Alternative
  Solutions.http//www.activitytherapy.com/spirit.h
  tm

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PARISH NURSE QUESTIONS

• Center for Aging, Religion, and Spirituality.St.
  Paul, MN.Phone [phone]
• Email info_at_aging-religion-spirituality.com
• Outreach to Faith Communities Kit.Kensington,
  MD National Family Caregivers
  Association.Three downloadable faith services
  (Interfaith, Lutheran, and Catholic) to use for
  worship with caregivers. http//www.thefamilycare
  giver.org/national_family_caregiver_month/guide.cf
  m
• Providing a pastoral, caring ministry to people
  suffering from Alzheimers disease.Hager, J.W.
  Lutheran Services Northeast, Hazelton,
  PA.http//archive.elca.org/lutheranpartners/archi
  ves/provid.html

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MORE INFORMATION

• Minnesota/North Dakota Alzheimers Association
• 1-800-272-3900 (24-hour helpline)
• 952-830-0513
• Website http//www.alzmndakorg
• N. Bud Grossman Center for Memory Research and
  Care
• 612-273-8720
• Website for the Memory Clinic http//www.memory.u
  mn.edu/cmrc/memclin.html

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MORE INFORMATION

• Area Agencies on Aging
• Senior LinkAge Line 1-800-333-2433
• Minnesota HelpInfo http//www.minnesotahelp.info/
  public/
• Metropolitan Area Agency on Aging 651-641-8612
• Other regions see http//www.minnesota-aaa.org/ab
  out/aaacontacts.html
• Website http//www.minnesota-aaa.org/about/index.
  html

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MORE INFORMATION

• Children of Aging ParentsP.O. Box 167
  Richboro, PA 18954 1-800-227-7294Web address
  www.caps4caregivers.org
• Eldercare Locator1-800-677-1116Web address
  www.eldercare.gov
• Family Caregiver Alliance 180 Montgomery Street
  Suite 1100 San Francisco, CA 94104
  1-800-445-8106Web address www.caregiver.org

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QUESTIONS?

• Joseph E. Gaugler, Ph.D.
• Associate Professor, McKnight Presidential Fellow
• Center on Aging, Center for Gerontological
  Nursing, School of Nursing
• The University of Minnesota
• 6-153 Weaver-Densford Hall, 1331
• 308 Harvard Street, S.E.
• Minneapolis, MN 55455
• Phone [phone]
• Email gaug0015_at_umn.edu
• Fax [phone]