Documentation - Issue Papers, Articles, Toolkits, and Reports

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Description File

2011 NADRC:
Dementia Capability Toolkit for States

This toolkit complements the issue brief titled Making the Long-Term Services and Supports System Work for People With Dementia and Their Caregivers by identifying resources that states and communities can use to design initiatives to ensure that programs are dementia-capable.

PDF icon Dementia Capability Toolkit for States (PDF, 123 KB)

2013 NADRC Learning Collaborative Materials
Independence and Decision Making Capacity

This annotated bibliography provides a summary of articles available on independence and decision-making abilities of patients with dementia.

File Independence Decision Making Capacity (DOCX, 49 KB)

2013 NADRC Learning Collaborative Materials
Mistreatment of Persons with Dementia and Caregiver Support: An Annotated Bibliography

This annotated bibliography is designed to provide a summary of the articles available on the topic of with mistreatment of persons with dementia and caregiver support.

File Mistreatment PWD - MI (DOCX, 43 KB)

2013 NADRC Learning Collaborative Materials
Palliative Care, Hospice, and End of Life Services for People with Dementia: Annotated Bibliography

This annotated bibliography provides a summary of articles available on palliative care, hospice, and end-of-life services for people with dementia.

File Palliative Hospice EoL (DOCX, 50 KB)

2013 NADRC Learning Collaborative Materials
Staff Training Toolkit

Because states serve a substantial number of persons with dementia in their long-term services and supports (LTSS) systems, it is essential that information and referral/assistance staff, options counselors, and care managers in Aging and Disability Resource Centers (ADRCs) and Area Agencies on Aging (AAAs) recognize and understand the unique needs of persons with dementia and their caregivers. These staff must be capable of accommodating the various needs of this population, including, but not limited to, memory loss, communication challenges, behavioral symptoms, and other medical conditions. Given the needs of people with dementia, specialized staff training is needed, but often not provided. This toolkit includes links to trainings, knowledge tests, and staff competencies, and information on state dementia training policies and state Alzheimer’s disease plan recommendations.

PDF icon Staff Training Toolkit September 2013 (PDF, 317 KB)

2013 NADRC:
2013 ADSSP Project Profiles

Document contains brief description of the 2013 ADSSP grant projects.

File 2013 ADSSP Grantee Profiles (DOCX, 37 KB)

2014 ACL & NADRC:
Dementia-Capable States and Communities: the Basics

The Secretary of Health and Human Services’ (HHS) leads the National Plan to Address Alzheimer’s Disease. The Plan provides a national strategy for strengthening research, medical care, and long-term services and supports for those living with dementias, including Alzheimer’s disease. It contains actions for federal agencies, states, and communities related to dealing with the unique needs of people with dementia, and their families. The Plan's 5 goals include:
1. Prevent and effectively treat Alzheimer’s disease by 2025.
2. Optimize care quality and efficiency.
3. Expand supports for people with Alzheimer’s disease and their families.
4. Enhance public awareness and engagement.
5. Track progress and drive improvement.

Using these goals as guidance, this paper discusses how states and communities can become dementia-capable, that is, able to help people with dementia and their caregivers. To show how this can be done, we provide examples from the United States and some other countries.

PDF icon Dementia Capability 2014 (PDF, 353 KB)

2014 NADRC:
ADI-SSS 2014 Project Summaries

Document contains brief descriptions of the 2014 ADI-SSS grant projects.

File 2014-ADI-project-summaries_0.docx

2014 NADRC:
ADSSP 2014 Project Profiles

Document contains brief descriptions of the 2014 ADSSP grant projects.

File 2014-ADSSP-grant-profiles_0.docx

2014 NADRC:
Report: The Alzheimer’s Voice: Person-Centered and Person-Directed Dementia Care

Research suggests that many families and service providers do not adequately incorporate the voice of people with AD into the care planning and decision-making process. Too often it is assumed that people with dementia cannot contribute to these decisions and they are excluded from the discussion or their perspectives are not taken into account, even though the decisions are about them and affect them. A number of tools are available to assess the decision-making capacity of individuals with dementia and to assess the degree to which individuals with dementia participate in the decisions that affect them. In addition, tools are available to assess the person-centeredness of the care process and outcomes. To better serve people with dementia and their families, it is important that the long-term services and supports system find better ways to incorporate the goals, values, and preferences of people with dementia into the decision-making process. People with dementia are, first and foremost, people, and their right to control their own lives needs to be respected to the extent practicable.

File The Alzheimer’s Voice: Person-Centered and Person-Directed Dementia Care (DOCX, 162 KB)

2015 NADRC:
Report: Tools for Screening, Identification, Referral, and Care Planning for People With Alzheimer's Disease and Their Caregivers 

The purpose of this report is to describe:
• Screening instruments for possible AD and other dementias that can be administered by people without clinical training
• Needs assessment and referral tools that are available for potential use
• Tools used for care planning, screening, and referral by current System Integration grantees of the Alzheimer Disease Supportive Services Program (ADSSP): Georgia, Minnesota, New York, and Ohio

PDF icon Tools for Screening, Identification, Referral, and Care Planning for People With Alzheimer's Disease and Their Caregivers

2015 NADRC:
Business Planning for Dementia Programs: Toolkit for Nonprofit and Government Agencies

Using a basic business plan template as an organizing framework, this Toolkit walks the reader through key issues for consideration, offers examples, and provides resources for further exploration. The steps offered in this Toolkit provide a guide for writing the components of a business plan. Although this Toolkit is crafted to focus on dementia programs, the questions posed involve considering larger issues, such as an assessment of internal organizational capabilities and external constraints in the marketplace. These factors influence choice of the business model, operational approach, financing, implementation success, and sustainability. Preparing and using a sound business plan increases the likelihood that the program will be sustained.

PDF icon Business Planning for Dementia Programs: Toolkit for Nonprofit and Government Agencies (PDF. 636.3 KB)

2015 NADRC:
Care Transition Resource Guide

This resource guide includes peer-reviewed literature and other resources related to various aspects of care transitions for people with dementia.
The movement of patients from one health care provider or setting to another as their health care condition and needs change is termed a care transition. Research has shown that during care transitions, patients, especially those at higher risk for rehospitalization such as people with dementia, can be subject to inadequate communication between providers in various settings, poor continuity of care, and limited access to services which can contribute to poor outcomes and less than optimal care. A growing body of research on care transitions and work in the field aims to improve these care transitions.

File Peer-reviewed literature and other resources related to various aspects of care transitions for people with dementia

2015 NADRC:
IDD and Dementia Report
The National Plan to Address Alzheimer’s Disease (2014) calls for a coordinated effort to develop workforces in aging, public health, and intellectual and developmental disabilities that are dementia-capable and culturally-competent. In response to this directive, the U.S. Administration on Community Living presents the findings and resources in this white paper to community of providers who primarily serve older adults. It provides a broad overview of the services and support system for persons with intellectual and developmental disabilities (IDD) affected by dementia and their caregivers, examples of cross-network initiatives, and resources for improving dementia care across agencies and organizations that serve this population.

This white paper presents the current state of services and support system for persons with IDD who have dementia. There is recognition in the aging and IDD networks that states are in a transition period where the future of services will be more person-centered and focused on integration in the community (see Appendix A).

PDF icon IDD and Dementia Paper (July 2015) (pdf)

2015 NADRC:
The Alzheimer’s Disease Supportive Services Program: 2015 Report on Completed Grants
This report summarizes the experience of 72 completed ADSSP grants initially funded by ACL/AoA between 2007 and 2010, including 49 Innovative Practices and 23 Evidence-Based grants. Innovative Practices grants use a variety of approaches to improve the delivery of supportive services at the community level. These approaches have some foundation in research, but have not been rigorously tested in randomized clinical trials. Evidence-Based grants translate interventions that have been tested through randomized-controlled clinical trials with the results published in peer-reviewed journals. The 72 ADSSP grants included in this report served 39,732 people over the course of their grant period, including 19,909 persons with dementia and 19,135 caregivers.

File 2015 Closed ADSSP Grant Report

2015 NADRC:
Training Resources Compendium for Dementia Care Providers and Volunteers
This toolkit includes information about trainings and training resources, knowledge tests, competencies for health care professionals, and information on state dementia training policies and state Alzheimer’s plans.

File Training Resources Compendium for Dementia Care Providers and Volunteers

2016 NADRC:
2016 Training Resources Toolkit for Dementia Care Providers and Volunteers
This toolkit includes information about trainings and training resources, knowledge tests, competencies for health care professionals, and information on state dementia training policies and state Alzheimer’s plans.

This list of resources is not exhaustive, but rather each resource was selected and reviewed by the National Alzheimer’s and Dementia Resource Center (NADRC) staff. The resources are free of charge and come from a variety of sources including government, academia, Alzheimer’s disease centers, geriatric workforce education programs, and others. Access to the resources—either online or through the NADRC—is noted in each of the accompanying descriptions.

PDF icon 2016 Training Resources Toolkit for Dementia Care Providers and Volunteers

2016 NADRC:
Education Resources for People with Dementia and their Family Caregivers
This toolkit includes information about educational resources to assist family caregivers and people with dementia as they navigate through the stages of their condition.

This list of resources is not exhaustive, but represents a selection of resources reviewed by National Alzheimer’s and Dementia Resource Center staff. The resources are available free of charge and come from a variety of sources, including government, academia, government-funded Alzheimer’s disease centers, and nonprofit organizations dedicated to Alzheimer’s disease and related disorders. Online access to the resources is noted in each of the accompanying descriptions. The “Other Related Resources” sections include supplemental materials that can be used to extend the learning experience.

PDF icon Education Resources for People with Dementia and their Family Caregivers (PDF toolkit)

2016 NADRC:
Identifying and Meeting the Needs of Individuals with Dementia Who Live Alone

Highlights indications that a person with dementia living alone is not able to adequately manage his or her personal care needs and daily activities, such as frequent emergency medical visits, little or no food in the home, unkempt appearance, dirty clothes, and weather-inappropriate clothing. Intervention strategies to serve this population also are addressed, including referral for pharmacist or nurse medication reconciliation, home-delivered meals, arranging for home care services, notifying the police and fire departments of the person’s condition and providing contact information.

PDF icon Identifying and Meeting the Needs of Individuals with Dementia Who Live Alone

2017 NADRC Produced Resource:
Translating Evidence-Based Dementia Interventions to the Community: Experience of the Administration on Aging’s ADSSP Grantees

In 2008, the Administration on Aging (AoA) shifted the focus of the Alzheimer’s Disease Supportive Services Program (ADSSP)―AOA’s program that provides grants to states for projects to improve services to people with dementia and their caregivers―to support projects that translate evidence-based, nonpharmacological interventions from research to practice in the community. Sixteen states used ADSSP grants to conduct translation projects to implement nine existing evidence-based interventions. These projects are now complete. This report analyzes the experience of those ADSSP state grantees and their community partners to understand what issues they confronted and the strategies they used to address them.

PDF icon Translation_of_EB_Interventions_final_508.pdf

2017 NADRC:
Faith-Related Programs in Dementia Care, Support, and Education
Faith communities offer a range of services that incorporate aspects of spirituality and religion for people with dementia and their caregivers. These services are developed and implemented either by a faith community or an outside secular organization. This case study report focuses on initiatives developed by faith-based or secular organizations that include faith-related or spiritual components.

PDF icon ISSUE BRIEF: Faith-Related Programs in Dementia Care, Support, and Education

Recruiting Older Adults into Research (ROAR) Toolkit  

The National Institute on Aging (NIA) at NIH, the Centers for Disease Control and Prevention (CDC), and the Administration for Community Living (ACL) are collaborating on the Recruiting Older Adults into Research (ROAR) project to encourage older adults and their family caregivers, including underrepresented populations, to consider participating in research. These customizable materials focus on Alzheimer’s and dementia research. The toolkit is available in English, Spanish, and Chinese. The toolkit contains an introduction to the ROAR project messages and materials, with tips about how to use them in your community, including sample social media messages and frequently asked questions.

ACL Issue Brief (2015):
Responding to the Wandering and Exit-seeking Behaviors of People with Dementia

Discusses person-centered approaches to meeting people’s needs and evidence about the effectiveness of person-centered services for people with dementia.

Summarizes evidence and practice recommendations related to implementing person-centered care in the context of responding to wandering and exit-seeking behaviors.

Provides an appendix with techniques that Administration for Community Living (ACL) dementia grantees know about or have used to address wandering concerns.

PDF icon Wandering Exit Seeking Issue Brief (May 2015)

Alliance for Aging Research, AOA, & the MetLife Foundation (2012):
White Paper: Translating Innovation to Impact: Evidence-based interventions to support people with Alzheimer’s disease and their caregivers at home and in their communities.

Research conducted in the United States shows that more than forty non-pharmacological treatments and care practices have positive effects for some people with Alzheimer’s or other dementias who live in the community and some family caregivers. As discussed in this white paper, all of these treatments and care practices have been tested in randomized controlled trials (RCTs), the gold standard for rigorous scientific research. More non-pharmacological treatments and care practices are in various stages of development and evaluation. Much of this research has been conducted with funding support from the National Institute on Aging and other National Institutes of Health partners, including the National Institute on Nursing Research. In just the three months following the June 2012 meeting, RCTs conducted in the U.S. have shown positive effects for three new non-pharmacological treatments and care practices for people with these conditions and their family caregivers.

PDF icon White Paper (PDF, 949 KB)

Alzheimer's Association (2009):
Considerations for Those Who Live Alone

General guidelines for working with individuals with dementia who live alone.
Excerpted from the Alzheimer's Association Dementia Care Practice Recommendations

PDF icon Considerations_For_Those_Who_Live_Alone.pdf

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Anger Frustration Fights Fact Sheet English/Spanish

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Bathing Fact Sheet English/Spanish

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Getting Lost Fact Sheet English/Spanish

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Hallucinations Fact Sheet English/Spanish

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Making Home Safe Fact Sheet English/Spanish

Alzheimer’s Greater Los Angeles (2015):
Six Alzheimer's/Dementia plain language fact sheets in English/Spanish
These six Alzheimer's/Dementia plain language fact sheets in English/Spanish were developed to assist caregivers in managing challenges associated with caregiving.

These fact sheets were developed by Alzheimer's Greater Los Angeles as part of an AOA grant.

Alzheimer’s Greater Los Angeles plain language fact sheets may be reproduced, adapted, or both with the following restrictions:
• Written permission needs to be granted by Alzheimer’s Greater Los Angeles for any adaptations. To request a modifiable template of the fact sheets that enables your agency to cobrand them, contact Susan Howland at showland@alzgla.org(link sends e-mail).
• Acknowledgement must be cited in print and online uses: Reproduced (or Adapted) from [INSERT NAME OF PLAIN LANGUAGE FACT SHEET]developed by Alzheimer’s Greater Los Angeles
• Alzheimer’s Greater Los Angeles materials and resources cannot be sold in their original or modified/adapted form.

PDF icon Medications Fact Sheet English/Spanish

Developed by the Duke Family Support Program (2002):
Can a Person with Alzheimer’s Live Alone?

A list of questions that may guide decisions about the safety of someone with a memory disorder living alone.

PDF icon Can a Person with Alzheimer’s Live Alone?

Developed by the Duke Family Support Program (2002):
Fraud Protection for Elders Living Alone

Suggested ways to protect elders at risk of fraud who live alone.

PDF icon PWD_Living_Alone_Fraud_Protection.pdf

The Secretary of Health and Human Services (HHS) leads the National Plan to Address Alzheimer’s Disease, which deals with many of these issues. The Plan provides a national strategy for strengthening research, medical care, and long-term services and supports for those living with dementia, including Alzheimer’s disease. It contains actions for federal agencies, states, and communities related to dealing with the unique needs of people with dementia, and their families. The Plan, which the 2011 National Alzheimer’s Project Act requires, has 5 goals:

1. Prevent and effectively treat Alzheimer’s disease by 2025.
2. Optimize care quality and efficiency.
3. Expand supports for people with Alzheimer’s disease and their families.
4. Enhance public awareness and engagement.
5. Track progress and drive improvement.

Using these goals as guidance, we discuss how states and communities can become dementia-capable, that is, able to help people with dementia and their caregivers. To show how this can be done, we provide examples from the United States and some other countries. We begin by explaining why dementia-capability is so important for families, their communities, states, and the nation.

PDF icon Paper discusses how states and communities can become dementia-capable

University of Iowa (2004):
People with Dementia Living Alone Risk Assessment
2004
Assessment tool to assess level of risk of people with dementia who are living alone in the community.
Adapted from an assessment tool developed by the University of Iowa School of Nursing.

PDF icon People with Dementia Living Alone Risk Assessment