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Dementia Care

Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. According to the Alzheimer's Association, Alzheimer’s disease is the most common type of dementia, accounting for 60 to 80 percent of cases.

Resources from ACL and CMS

Resources from ACL

Dementia-capable States and Communities: the Basics (PDF) (2014)
This issue brief defines dementia-capability and explores how to create “dementia-capable” long-term services and supports at the state and local levels.

Responding to the Wandering Behavior of People with Dementia (PDF)
This resource describes the needs of people with dementia who wander and discusses how to use person-centered approaches to address the challenges of wandering.

Alzheimer’s Disease Supportive Services Program (ADSSP)
This program through the Administration on Aging supports state efforts to expand the availability of community-level supportive services for persons with Alzheimer’s Disease and Related Disorders (ADRD) and their caregivers. The ADSSP supports the creation of responsive, integrated, and sustainable service delivery systems for individuals with ADRD and their family caregivers across the United States.  The website contains information on current projects as well as resources and useful links on ADSSP.

Resources from CMS

Hand in Hand: A Training Series for Nursing Homes (September 2018)
Section 6121 of the Affordable Care Act of 2010 requires CMS to ensure that nurse aides receive regular training on caring for residents with dementia and on preventing abuse. CMS, supported by a team of training developers and subject matters experts, created this training to address the need for nurse aides’ annual in-service training on these important topics. The mission of the Hand in Hand training is to provide nursing homes with a high-quality training program that emphasizes person-centered care in the care of persons with dementia and the prevention of abuse.  Hand in Hand is available as a self-paced training as well as an instructor-led course. The self-paced training may take approximately 24 hours to complete. Download  materials for instructor-led training and view the self-paced online training.


Additonal Resources

Hand in Hand: A Training Series for Nursing Homes - Tips for Ombudsman Program Trianing and Advocacy (October 2018)
Long-Term Care Ombudsman programs can benefit from Hand in Hand, a resource on caring for individuals with dementia and preventing abuse. This tip sheet provides information about this resource and ideas for Ombudsman program use.

The Fine Art of Balancing Protection with Self Determination - Webinar (November 2015)
This session will talk about recognizing the signs and signals of abuse, neglect (self-neglect) and exploitation, tools to maximize communication with persons with differing abilities, and promoting self-determination and choice through supported approaches that mitigate against risk and empower individuals. The session will explore the application of the Supported Decision-Making model to assist persons in making choices, increase access to positive life outcomes, and reduce the risk of harm.

Living Fully with Dementia: Words Matter (July 2015)
Produced by the Dementia Action Alliance, this paper provides guidance on preferred words/phrases, including the rationale for their use, as determined by a consensus of a number of people living with early-stage dementia.

The Interprofessional Approach to Alzheimer's Disease and Dementia Care: Module Series
The NJ Geriatric Education Center, in collaboration with DHHS/Administration on Community Living, is pleased to present a FREE 5-module web-based program on the interprofessional approach to assessment and management of Alzheimer's disease and dementia. Participants are encouraged to view the entire series in order, as content of each module builds upon prior modules.

IDD and Dementia (July 2015)
This new report by ACL’s National Alzheimer’s and Dementia Resource Center provides a broad overview of the services and support system for persons with IDD affected by dementia, as well as their caregivers. The paper includes examples of aging and disability network partnerships and resources for improving dementia care across agencies and organizations.

Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes (2009)
This guide details recommendations that are the foundation of a multiyear campaign by the Alzheimer's Association. Each year the campaign is focusing on a different set of care recommendations that can make a significant difference in an individual’s quality of life. Phase 1 focuses on the basics of good dementia care and three care areas: food and fluid consumption, pain management and social engagement. Phase 2 covers three additional care areas — wandering, falls and physical restraints. In the next few years, the campaign will add recommendations in new care areas, such as end-of-life care, and update recommendations as new evidence on effective care interventions becomes available.

Alzheimer’s Disease Education and Referral Center - Caregiving Tip Sheets and Resource List
This website contains tipsheets and resources for caregivers that address the demands of day-to-day care, changing family roles, and difficult decisions about placement in a care facility.  Topic areas covered include bathing, disaster preparedness, end of life care, managing personality and behavior changes, and incontinence and managing medicines.

New Resource Tool for Alzheimer’s and Dementia Staff
This toolkit includes a PowerPoint in-service training on a number of topics for health care staff, and all include a pre-test, post-test, handouts, answers, in-service evaluation, and in-service certificates. The toolkit is free and available on NCCDP's website. To learn more about NCCDP and Alzheimer’s and Dementia Staff Education Week, go to www.nccdp.org.

Alzheimer's Early Detection Alliance (AEDA) Toolkit
The Alzheimer's Association offers a number of resources to help in communication efforts. The toolkit includes information for your advertisements, brochures, intranet, newsletters, posters and more.

Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities
This free, online 21-page booklet, produced by the Alzheimer’s Association-Greater Illinois Chapter, provides information to families and staff of long-term care facilities about Alzheimer’s disease and other dementias, particularly care issues related to the late and final stages. For families, this guide offers information on informed choices about a variety of medical decisions they may face on behalf of loved ones with dementia living in nursing homes, assisted living facilities, and other types of care settings. It is also intended to equip families with questions to ask about obtaining quality care for their loved ones, including a checklist of comfort care measures to be discussed with staff members of care facilities. For staff , the guide will serve as a tool to help educate families and assist them in care planning. Individuals and organizations are encouraged to disseminate this booklet in electronic and print formats.

20 Questions, 100 Answers, 6 Perspectives (on Dementia)

Daily Oral Care for the Nursing Home Resident with Dementia for CNAs

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Engaging & Educating Nursing Home Families & Ombudsman to Improve Dementia Care (2016 Consumer Voice Annual Conference)
Presented by Richard Mollot of the Long-Term Community Care Coalition, this presentation provides resources for families as well as Ombudsmen in regards to caring for residents with dementia. 

The Improper Drugging of Nursing Home Residents with Dementia (2015 Consumer Voice Annual Conference)
Presented by Jonathan Evans, MD and Morris Kaplan, J.D., this PowerPoint discusses how to manage challenging behaviors without drugs.

Enhancing Well-Being in Older Adults Living with Dementia (October 2013)
In this session from the 37th annual Consumer Voice conference Dr. Power presents on dementia. He has lectured on dementia and other elder care topics throughout the US and Canada, the UK, Denmark, Singapore and Malta. Dr. Power has been named one of 2013’s “Five Leaders of Tomorrow” by Long-Term Living Magazine. In this session, Dr. Power discusses caring, communicating, decoding distress and enhancing well-being in older adults living with dementia. Dr. G. Allen Power, St. John's Home, University of Rochester, PowerPoint Presentation Part I and PowerPoint Presentation Part II


Information to Share with Consumers

Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes

Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities



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2011 Alzheimer’s Disease Facts and Figures
An Alzheimer’s Association Facts and Figures report details the growing prevalence and escalating impact of Alzheimer’s and dementia on individuals, caregivers, families, government and the nation.

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