Dementia Special: Delirium, Alzheimer's, Dementia Care, and Supporting CaregiversPage 51 of 51

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Resources

This list includes resources directed toward healthcare providers and also resources that caregivers can be directed to for information and training materials.

Professional Courses & Training Methods

Both of these companies provide training in specific methods of working and communicating with persons with age-related cognitive decline that emphasize dignity and respect. These are for agencies, professionals, para-professionals, and family caregivers. Materials include DVDs, publications, workshops, courses, seminars, etc., and some material is available at no cost. No endorsement is implied by listings.

Teepa Snow / Positive Approach® to Care
https://teepasnow.com/

Naomi Feil / Validation Training Institute
https://vfvalidation.org/

Organizational Resources

AARP
Family Caregiving / Caregiver Resource Center
https://www.aarp.org/caregiving/
Caregiver Stories
https://www.aarp.org/caregiving/stories/info-2017/kim-campbell-caregiving-fd.html
See also Home Alone Alliance.

Administration for Community Living (ACL) [was Administration on Aging (AOA)]
https://acl.gov/
Support to Caregivers
  https://acl.gov/programs/support-caregivers (2019)
Eldercare Locator (assistance in locating services)
  https://eldercare.acl.gov/Public/Index.aspx

Alliance for Aging Research
https://www.agingresearch.org/
https://www.agingresearch.org/health-topic/alzheimers-disease/
https://www.agingresearch.org/health-topic/caregiving/
Alzheimer’s Disease: Helping Yourself Help a Loved One–Caregiver Workbook https://www.agingresearch.org/document/alzheimers-disease-helping-yourself-help-a-loved-one-caregiver-workbook/

Alzheimer’s Association
Educational material, and links to finding online and in-person support groups.
https://www.alz.org/
Training and Education Center—14 courses, most directed to caregivers
  https://training.alz.org/home
Caregiver Stress Check
  https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress-check
Alzheimer’s and related Dementias Education and Referral Center (ADEAR)
  https://www.nia.nih.gov/health/about-adear-center

Alzheimer’s Foundation of America
Resources for professional training and caregivers, memory screening, and helpline.
https://alzfdn.org/

Alzheimer’s Research Forum
News website and information resource dedicated to helping researchers accelerate discovery and advance development of diagnostics and treatments for Alzheimer’s disease and related disorders.
https://www.alzforum.org/

American Psychological Association
Caregiver Briefcase
https://www.apa.org/pi/about/publications/caregivers/index

BrightFocus Foundation [was American Health Assistance Foundation (AHAF)]
https://www.brightfocus.org/alzheimers

Banner Alzheimer’s Institute
https://www.bannerhealth.com/locations/phoenix/banner-alzheimers-institute
Dementia Dialogue / Alzheimer’s Insights: Caregiver Tips
Institute’s YouTube channel with 69 in-depth videos for caregivers.
  https://www.youtube.com/playlist?list=PLnSXT-M_BnWkwLHt2jLKp6IU75wZZAJ51

Caregiver Bill of Rights
https://caregiver.com/articles/caregivers-bill-of-rights/

Centers for Disease Control and Prevention
Alzheimer’s disease and caregiver resources.
https://www.cdc.gov/aging/index.html https://www.cdc.gov/aging/aginginfo/alzheimers.htm
https://www.cdc.gov/aging/caregiving/index.htm
https://www.cdc.gov/aging/caregiving/resources.htm
https://www.cdc.gov/aging/healthybrain/issue-maps/supporting-caregivers.html

Family Caregiver Alliance
https://www.caregiver.org/
Fact and Tip Sheets (several dozen on dementia and caregiver topics)
  https://www.caregiver.org/fact-sheets
National Center on Caregiving (NCC)
  https://www.caregiver.org/national-center-caregiving
Caregivers Count Too! Toolkit
An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers
  https://www.caregiver.org/caregivers-count-too-toolkit
Caregiver College | 8 Video Series
  https://www.youtube.com/playlist?list=PLa1B8idpEiEplIAyH_swKvZvTQ9yAKH6t

HelpGuide
https://www.helpguide.org
Tips for Alzheimer’s & Dementia Caregivers
https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm

Home Alone Alliance
Family Caregiving How-To Video Series
Includes such general topics as Special Diets, Managing Incontinence, Wound Care, Mobility, Managing Medications, with videos on multiple sub-topics, downloadable PDFs of Resource Guides, and most are in English and Spanish
  https://www.aarp.org/ppi/initiatives/home-alone-alliance/

Inspire
Collection of “communities” (discussion forums) related to specific diseases and caregiving.
https://www.inspire.com/

Mayo Clinic
Searching on “Alzheimer’s” brings many pages a caregiver could use.
https://www.mayoclinic.com

MedlinePlus
https://medlineplus.gov/alzheimersdisease.html

National Academies of Sciences, Engineering and Medicine
Health and Medicine Division [formerly the Institute of Medicine (IOM)]
http://www.nationalacademies.org/hmd/
Search on “caregiving” for numerous resources useful to healthcare providers Integrating Health Care and Social Services for People with Serious Illness: Proceedings of a Workshop http://www.nationalacademies.org/hmd/Reports/2019/integrating-healthcare-and-social-services-for-people-with-serious-illness-proceedings.aspx
Study on Family Caregiving for Older Adults
http://www.nationalacademies.org/hmd/Activities/Aging/FamilyCaregivingforOlderAdults.aspx

National Alliance for Caregiving
https://www.caregiving.org/
https://www.caregiving.org/innovation/

National Hospice and Palliative Care Organization, CaringInfo Program
Caregiving
https://www.nhpco.org/patients-and-caregivers/caregiving/

National Institute on Aging (part of NIH)
Alzheimer’s Disease & Related Dementias
  https://www.nia.nih.gov/health/alzheimers
Getting Help with Alzheimer’s Caregiving
  https://www.nia.nih.gov/health/getting-help-alzheimers-caregiving
Alzheimer’s and related Dementias Education and Referral Center (ADEAR)
  https://www.nia.nih.gov/health/about-adear-center
Alzheimer’s and Dementia Resources for Professionals
  https://www.nia.nih.gov/health/alzheimers-dementia-resources-for-professionals

Next Step in Care (United Hospital Fund)
https://www.nextstepincare.org/
https://www.nextstepincare.org/Provider_Home/
Guides, Checklists, Videos—for family caregivers and providers in English, Spanish, Chinese, and Russian.
A Toolkit for Working with Family Caregivers
  https://www.nextstepincare.org/providers/toolkit/

Rosalyn Carter Institute for Caregiving
Print and online materials, links to outside resources, and online and in-person training for volunteers and healthcare providers.
http://www.rosalynncarter.org
http://www.rosalynncarter.org/education-and-training/
http://www.rosalynncarter.org/resources/implementation-tools-and-guides/

SymptomGuide Dementia
Phone app for Apple and Android for use by dementia caregivers.
https://www.dementiaguide.com/

References

AARP. (2019). Care Act Gains Ground: 3 more states adopt law to help family caregivers. AARP Bulletin. October 2019. p. 6.

AARP. (2019a). The Caregiver Advise, Record, Enable (CARE) Act. Map. Retrieved November 4, 2019 from https://www.aarp.org/content/dam/aarp/ppi/2019/09/care-act-map.pdf.

Administration for Community Living (ACL). (2019). RAISE Family Caregiving Advisory Council. Retrieved October 24, 2019 from https://acl.gov/programs/support-caregivers/raise-family-caregiving-advisory-council. Page has links to advisory council agendas, summaries, and live recordings of meetings.

Administration for Community Living (ACL). (2019a). Supporting Community Living with Caregiving Advisory Councils. Retrieved October 24, 2019 from https://acl.gov/news-and-events/acl-blog/supporting-community-living-caregiving-advisory-councils.

Alzheimer’s Association (AlzA). (2019). The Public Health Approach. Retrieved October 25, 2019 from https://alz.org/professionals/public-health/the-public-health-approach.

Alzheimer’s Association (AlzA). (2019a). Caregiver Health. Retrieved October 31, 2019 from https://alz.org/help-support/caregiving/caregiver-health.
https://alz.org/help-support/caregiving/caregiver-health/caregiver-stress
https://alz.org/help-support/caregiving/caregiver-health/caregiver-stress-check
https://alz.org/professionals/public-health/core-areas/caregivers
https://alz.org/professionals/public-health/road-map

Alzheimer’s Association (AlzA). (2019b). Alzheimer’s Disease Facts and Figures 2019. Infographic and full report. Retrieved October 26, 2019 from https://alz.org/media/Documents/alzheimers-facts-and-figures-infographic-2019.pdf AND https://alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf.

Alzheimer’s Association (AlzA). (2019c). Health systems and clinicians: Helping you enhance care and improve outcomes. Retrieved October 27, 2019 from https://alz.org/professionals/health-systems-clinicians.

Birkenhager-Gillesse EG, Doudewijn JK, Zuidema SU, Achterberg WP. (2018). The “more at home with dementia” program: a randomized controlled study protocol to determine how caregiver training affects the well-being of patients and caregivers. BMC Geriatrics 18, Article #: 252 (2018). Retrieved October 22, 2019 from https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0948-3.

Blom MM, Zarit SH, Groot Zwaaftink RBM, et al. (2015). Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial. PLOS|One. February 13, 2015. Retrieved October 27, 2019 from https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0116622. https://doi.org/10.1371/journal.pone.0116622.

Brodaty H, Donkin M. (2009, June). Family Caregivers of People with Dementia. Dialogues in Clinical Neuroscience, 11(2):217–28. Retrieved October 25, 2019 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/.

Centers for Disease Control and Prevention (CDC). (2019). Supporting Caregivers: A Healthy Brain Initiative Issue Map. Alzheimer’s Disease and Healthy Aging Program. Retrieved October 29, 2019 from https://www.cdc.gov/aging/healthybrain/issue-maps/supporting-caregivers.html and https://www.cdc.gov/aging/healthybrain/pdf/Issue-Map-Supporting-Caregivers-508.pdf

Centers for Disease Control and Prevention (CDC). (2019a). Tips for Caregivers. Health Literacy, Older Adults. Retrieved October 29, 2019 from https://www.cdc.gov/healthliteracy/developmaterials/audiences/olderadults/tipsforcaregivers.html.

Centers for Disease Control and Prevention (CDC). (2019b). Caregiving. Alzheimer’s Disease and Healthy Aging Program. Retrieved October 25, 2019 from https://www.cdc.gov/aging/caregiving/index.htm.

Centers for Disease Control and Prevention (CDC). (2019c). Caregiving for Person with Alzheimer’s Disease or a Related Dementia. Retrieved October 29, 2019 from https://www.cdc.gov/aging/caregiving/alzheimer.htm.

Centers for Disease Control and Prevention (CDC). (2019d). Caregiving for Family and Friends—A Public Health Issue. Alzheimer’s Disease and Healthy Aging Program. Retrieved October 29, 2019 from https://www.cdc.gov/aging/caregiving/caregiver-brief.html

Centers for Disease Control and Prevention (CDC). (2019e). Alzheimer’s Disease and Healthy Aging Data Portal. Retrieved October 22, 2019 from https://www.cdc.gov/aging/agingdata/index.html.

Christiansen S. (2019). Study Shows the Effectiveness of Supportive Care Approaches for Dementia. Our Blog, alzheimers.net. Retrieved October 27, 2019 from https://www.alzheimers.net/study-shows-the-effectiveness-of-supportive-care-approaches-for-dementia/.

Family Caregiver Alliance (FCA). (2016). Ch. 1: Transfer Skills (Caregiver College Video Series). Retrieved November 3, 2019 from https://www.caregiver.org/ch-1-transfer-skills-caregiver-college-video-series.

Family Caregiver Alliance (FCA). (2014). Definitions. Retrieved October 31, 2019 from https://www.caregiver.org/definitions-0.

Family Caregiver Alliance (FCA). (2012). Alzheimer’s Disease and Caregiving. Retrieved October 27, 2019 from https://www.caregiver.org/alzheimers-disease-caregiving.

Family Caregiver Alliance (FCA). (2006). Care Givers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers. Retrieved October 24, 2019 from https://www.caregiver.org/sites/caregiver.org/files/pdfs/Assessment_Toolkit_20060802.pdf.

Family Caregiver Alliance (FCA). (n.d.). FCA Learning Center. Retrieved November 3, 2019 from https://www.caregiver.org/caregiver-learning-center.

Home Alone Alliance. (n.d.). Family Caregiving How-To Video Series. Retrieved November 1, 2019 from https://www.aarp.org/ppi/initiatives/home-alone-alliance.html.

Kernisan L. (2019). What Are Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs)? Better Health While Aging: Practical Information for Aging Health and Family Caregivers. Retrieved November 1, 2019 from https://betterhealthwhileaging.net/what-are-adls-and-iadls/.

Kerr N. (2019). Family Caregivers Who Perform Medical Tasks Need More Support: 20 million people face caregiving challenges without training, report finds. AARP Family Caregiving Medical. April 17, 2019. Retrieved November 1, 2019 from https://www.aarp.org/caregiving/health/info-2019/medical-tasks-study.html.

Lloyd J, Muers J, Patterson TG, Marczak M. (2018). Self-Compassion, Coping Strategies, and Caregiver Burden in Caregivers of People with Dementia. Clinical Gerontologist 42, no. 1 (2019). Retrieved October 27, 2019 from https://www.tandfonline.com/doi/full/10.1080/07317115.2018.1461162.

Mayo Clinic. (2018). https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784.

Mayo Clinic. (2017). Relaxation techniques: Try These Steps to Reduce Stress. Retrieved November 4, 2019 from https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/relaxation-technique/art-20045368?pg=2.

Medicare.gov (n.d.). PACE. Retrieved October 25, 2019 from https://www.medicare.gov/your-medicare-costs/get-help-paying-costs/pace.

Medicare.gov (2017). Quick Facts about Programs of All-Inclusive Care for the Elderly (PACE). Retrieved October 25, 2019 from https://www.medicare.gov/sites/default/files/2018-07/11341-pace.pdf.

Michigan Medicine, University of Michigan. (2017). “Pop drop” study finds more ER visits, higher costs for older disabled patients. Retrieved October 31, 2019 from https://www.sciencedaily.com/releases/2017/08/170824090105.htm.

Next Step in Care. (2015). For Family Caregivers: Medication Management. Guide/Form/Videos. Retrieved October 31, 2019 from https://www.nextstepincare.org/Caregiver_Home/Medication_Management_Guide/.

Next Step in Care. (2012). A Toolkit for Working with Family Caregivers. Retrieved November 4, 2019 from https://www.nextstepincare.org/providers/toolkit/.

Next Step in Care. (n.d.) Videos. Retrieved November 1, 2019 from https://www.nextstepincare.org/Videos/.

Reinhard SC, Levine C, Samis S. (2019). Home Alone Revisited: Family Caregivers Providing Complex Care. Founders of the Home Alone Alliance. Retrieved November 1, 2019 from https://www.aarp.org/content/dam/aarp/ppi/2019/04/home-alone-revisited-family-caregivers-providing-complex-care.pdf.

Reinhard SC, Given B, Petlick NH, Bemis A. (2008). Supporting Family Caregivers in Providing Care. In Hughes RG, ed. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Agency for Healthcare Research and Quality. Retrieved October 25, 2019 from: https://www.ncbi.nlm.nih.gov/books/NBK2665/.

Robinson L, Wayne MS, Segal J. (2019). Tips for Alzheimer’s & Dementia Caregivers. HelpGuide. Retrieved October 28, 2019 from https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm.

Sauer A. (2019). The Reasons Why Alzheimer’s and Dementia Caregivers Are So Stressed. Our Blog, alzheimers.net. Retrieved October 27, 2019 from https://www.alzheimers.net/the-reasons-why-alzheimers-and-dementia-caregivers-are-so-stressed/.

Slaboda J, Fail R, Norman G, Meier DE. (2018). A Study of Family Caregiver Burden and the Imperative of Practice Change to Address Family Caregivers’ Unmet Needs. Health Affairs Blog. January 11, 2018. DOI: 10.1377/hblog20180105.914873.

University of Michigan’s Institute of Gerontology & the National Association of Chronic Disease Directors. (2009). Implementing a Community-Based Program for Dementia Caregivers: An Action Guide using REACH OUT. National Association of Chronic Disease Directors, Atlanta, GA. https://cdn.ymaws.com/www.chronicdisease.org/resource/resmgr/Healthy_Aging_Critical_Issues_Brief/ReachOutActionGuide.pdf.

von Känel R., Mausbach BT, Dimsdale JE et al. (2019). Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers. BMC Geriatrics 19(18). Doi:10.1186/s12877-019-1033-2. Retrieved October 25, 2019 from https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-019-1033-2#citeas.

White CL, Overbaugh KJ, Pickering CEZ, Piernik-Yoder B, et al. (2018). Advancing care for family caregivers of persons with dementia through caregiver and community partnerships. Research Involvement and Engagement 4(1). Retrieved October 22, 2019 from https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0084-4.

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