As medical care becomes more complex and people live longer, the share of the population over 60 continues to grow, and the incidence of Alzheimer’s disease and other dementias increases, many groups in society feel the effects and pressures. For the healthcare industry there are pressures both financial- and personnel-related. The number of providers with geriatric specialty training is not keeping pace with the growing need for that expertise. Some areas of the country and the world suffer real shortages of medical and community resources.
No doubt for healthcare providers it can be daunting to take on yet more responsibility but, in the long term, improving support to caregivers of those with Alzheimer’s and other dementias (and to all family caregivers) stands to save everyone—individuals, communities, state and federal governments—time and money by reducing the need for emergency visits, hospital readmissions, and related services, and improving the quality of life for care recipients, caregivers, and all those who support them.
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/