Reports and Toolkits

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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.

Also: Dementia Capable: dementia-capability, staff training, identifying cognitive impairment, quality assurance, resource, service provision

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.

Also: Decision Making: autonomy, capacity, competency, financial capacity, informed consent, shared decision-making, care management

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.

Also: Elder Abuse: neglect, domestic abuse, mistreatment

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.

Also: Care Transitions: care management, continuity patient care, end of life, end-of-life, hospice, hospitalization, palliative, transition

File Palliative Hospice EoL (DOCX, 50 KB)

2013 NADRC:
2013 ADSSP Project Profiles

Document contains brief description of the 2013 ADSSP grant projects.

Also: grant profile, grant profiles, descriptions

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.

Also: Dementia Capable: dementia-capability, staff training, identifying cognitive impairment, quality assurance, resource, service provision

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.

Also: grant profile, grant profiles, descriptions

File 2014-ADI-project-summaries_0.docx

2014 NADRC:
ADSSP 2014 Project Profiles

Document contains brief descriptions of the 2014 ADSSP grant projects.

Also: grant profile, grant profiles, descriptions

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.

Also: Decision Making: autonomy, capacity, care planning, competency, financial capacity, informed consent, shared decision-making, care management;

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

2014 NADRC: Alzheimer’s Disease Supportive Services Program: Case Studies on Targeting and Engaging Diverse and Underserved Communities
Alzheimer’s Disease Supportive Services Program: Case Studies on Targeting and Engaging Diverse and Underserved Communities
The Alzheimer’s Disease Supportive Services Program (ADSSP) 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 authorizing statute emphasizes providing access to services for individuals “who are members of racial or ethnic minority groups, who have limited proficiency in speaking the English language, or who live in rural areas.” The grant projects from California, Georgia, New Mexico, and South Carolina each focused on serving distinct target populations. The project in California worked to engage Chinese and Japanese communities in Southern California and Chinese and Vietnamese communities in Northern California. Georgia’s project included a target population from 11 rural counties in central and west-south Georgia. The project in New Mexico focused on reaching veterans with ADRD, with an emphasis on Hispanic and American Indian families. Finally, South Carolina’s project targeted primarily the African American rural population in the southeastern part of the state

Ethnic/Population Groups: minority group, groups, diverse, underserved, diversity North American, Americans, Native, First Nation, Nations, African American, Arab, Arabs, Asian, Hispanic, Mexican, Latin, Inuit, Pacific Islander, Jews, Roma, LGTBQ , rural, frontier, women

File Diversity Case Studies-9-19-2014_FINAL 508.docx

2015 ADI-SSS Grant Projects

A list of all the funded 2015 ADI-SSS projects, including grantee contact information.

Also: grant profile, grant profiles, descriptions

File 2015 ADI grant profiles .docx

2015 ADSSP Grants

A list of all the funded 2015 ADSSP projects, including grantee contact information.

Also: grant profile, grant profiles, descriptions

File 2015 ADSSP Profiles.docx

2015 NADRC:
Training Family Caregivers on Skills for Behavioral Symptoms

This paper describes a variety of approaches designed to support caregivers of people with dementia to effectively address BPSD. Effective psychosocial interventions that improve self-efficacy and empower the caregiver to address BPSD are essential to maximize the quality of life for both people with dementia and their caregivers. Psychosocial interventions may be designed for use by formal care staff or by informal or family caregivers in the home environment. It cannot be assumed that interventions used by professional staff in institutional settings will work similarly when used by family caregivers at home.
Also: Training: program, programs, education, activity, activities, curriculum, health professional, staff, family; Caregiver(s): care giver(s), caregiving, family caregiver(s), spouse caregiver(s), informal, formal, professional, health personnel, healthcare facilities; Behavior: symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, evidenced-based, evidence based, NYUCI, REACH, II, EPIC, BRI Care Consultation, RDAD, R-DAD, Coping with Caregiving, Savvy Caregiving, STAR-C, Partners in Dementia Care, Cleveland Alzheimer’s Managed Care Demonstration, Tailored Activities, Music & Memory, Skills2Care

PDF icon Behavioral_Training_Paper_FINAL Oct 2015.pdf

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

Also: Diagnosis: diagnoses, examinations, screening, patient assessment, needs assessment, test, testing

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.

Also: Program Assessment: assessments, evaluation, outcome, program, measure, quality

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.

Also: Care Transitions: care management, care planning, continuity patient care, end of life, end-of-life, hospice, hospitalization, palliative, transition

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).

Also: IDD/Down: Down syndrome, intellectual disability, development disorder

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

2015 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.

Also: Decision Making: autonomy, capacity, care planning, competency, ethics, financial capacity, informed consent, shared decision-making, care management; Live Alone: live-alones, single person, widowhood, unmarried

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

2016 NADRC:
The Alzheimer’s Disease Supportive Services Program: 2016 Report on Completed Grants

This report summarizes the experience of 77 completed ADSSP grants initially funded by ACL/AoA between 2007 and 2010, including 49 Innovative Practices and 28 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 77 ADSSP grants included in this report served 47,076 people over the course of their grant period, including 23,925 persons with dementia and 23,151 caregivers.

Also: Evidence-based: evidenced-based, evidence based, NYUCI, REACH, II, EPIC, BRI Care Consultation, RDAD, Coping with Caregiving, Savvy Caregiving, Skills2Care, STAR-C, Partners in Dementia Care, Cleveland Alzheimer’s Managed Care Demonstration, Tailored Activities Program, translation.

2016 NADRC:
The Alzheimer’s Disease Supportive Services Program: 2016 Report on Completed Grants

This report summarizes the experience of 77 completed ADSSP grants initially funded by ACL/AoA between 2007 and 2010, including 49 Innovative Practices and 28 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 77 ADSSP grants included in this report served 47,076 people over the course of their grant period, including 23,925 persons with dementia and 23,151 caregivers.

Also: Evidence-based: evidenced-based, evidence based, NYUCI, REACH, II, EPIC, BRI Care Consultation, RDAD, Coping with Caregiving, Savvy Caregiving, Skills2Care, STAR-C, Partners in Dementia Care, Cleveland Alzheimer’s Managed Care Demonstration, Tailored Activities Program, translation.

PDF icon Closed_grant_aggregate_report_2016_FINAL_508.pdf

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.

Also: Evidence-based: evidenced-based, evidence based, NYUCI, REACH, II, EPIC, BRI Care Consultation, RDAD, Coping with Caregiving, Savvy Caregiving, STAR-C, Partners in Dementia Care, Cleveland Alzheimer’s Managed Care Demonstration, Tailored Activities; Program Assessment: assessments, evaluation, outcome, program, measure, quality

PDF icon Translation_of_EB_Interventions_final_508.pdf

2017 NADRC:
Guide for Professionals on Practical Strategies for Persons with Dementia Living Alone

The purpose of this guide is to provide practical strategies that can be used to address certain prominent challenges that service providers face when working with individuals with dementia who live alone. The guide is organized by the following six major sections that address different practical challenges of working with individuals with dementia who live alone: Identifying individuals with dementia who live alone, Building trust, Supporting safety and autonomy, Involving family and friends, Coordinating paid providers and formal support services, Assisting with transition to a new setting. The content comes from a literature review to determine the state of the science and current practices implemented with individuals who have dementia and live alone and interviews with subject matter experts who have experience with community programs or services for people with dementia who live alone. These expert interviews informed the strategies addressed in this guide.

Also: Live Alone: live-alones, single person, widowhood, unmarried

PDF icon PracticalStrategiesPWDlivealone508.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.

Also:Faith-based: faith, religion, spiritual therapies, complementary therapies, therapy, Shamanism

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

2018 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

This compendium resource is intended to assist Alzheimer’s Disease Programs to States and Communities applicants and grantees identify evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) requirements for inclusion in the grants.

The table consists of a list of evidence-based and evidence-informed interventions that meet the ACL criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP) and Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) grantees. Each intervention includes a brief description, the targeted population, peer-reviewed publications of the original studies that examine the model’s effectiveness, publications from grant projects, and the current and previous grantees that are planning to implement, are implementing, or have implemented the intervention. Please refer to the contact information to learn more about the intervention and how to access intervention materials.

Evidence-based intervention, evidence-informed intervention, evidence based, evidence, intervention, research, persons with dementia, caregivers, caregiver education, caregiver skills

This resource was updated on November 20, 2018.

2018 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

This compendium resource is intended to assist Alzheimer’s Disease Programs to States and Communities applicants and grantees identify evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) requirements for inclusion in the grants.

The table consists of a list of evidence-based and evidence-informed interventions that meet the ACL criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP) and Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) grantees. Each intervention includes a brief description, the targeted population, peer-reviewed publications of the original studies that examine the model’s effectiveness, publications from grant projects, and the current and previous grantees that are planning to implement, are implementing, or have implemented the intervention. Please refer to the contact information to learn more about the intervention and how to access intervention materials.

Evidence-based intervention, evidence-informed intervention, evidence based, evidence, intervention, research, persons with dementia, caregivers, caregiver education, caregiver skills

This resource was updated on November 20, 2018.

2018 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

This compendium resource is intended to assist Alzheimer’s Disease Programs to States and Communities applicants and grantees identify evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) requirements for inclusion in the grants.

The table consists of a list of evidence-based and evidence-informed interventions that meet the ACL criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP) and Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) grantees. Each intervention includes a brief description, the targeted population, peer-reviewed publications of the original studies that examine the model’s effectiveness, publications from grant projects, and the current and previous grantees that are planning to implement, are implementing, or have implemented the intervention. Please refer to the contact information to learn more about the intervention and how to access intervention materials.

Evidence-based intervention, evidence-informed intervention, evidence based, evidence, intervention, research, persons with dementia, caregivers, caregiver education, caregiver skills

This resource was updated on November 20, 2018.

2018 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

This compendium resource is intended to assist Alzheimer’s Disease Programs to States and Communities applicants and grantees identify evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) requirements for inclusion in the grants.

The table consists of a list of evidence-based and evidence-informed interventions that meet the ACL criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP) and Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) grantees. Each intervention includes a brief description, the targeted population, peer-reviewed publications of the original studies that examine the model’s effectiveness, publications from grant projects, and the current and previous grantees that are planning to implement, are implementing, or have implemented the intervention. Please refer to the contact information to learn more about the intervention and how to access intervention materials.

Evidence-based intervention, evidence-informed intervention, evidence based, evidence, intervention, research, persons with dementia, caregivers, caregiver education, caregiver skills

This resource was updated on November 20, 2018.

2018 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

This compendium resource is intended to assist Alzheimer’s Disease Programs to States and Communities applicants and grantees identify evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) requirements for inclusion in the grants.

The table consists of a list of evidence-based and evidence-informed interventions that meet the ACL criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP) and Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) grantees. Each intervention includes a brief description, the targeted population, peer-reviewed publications of the original studies that examine the model’s effectiveness, publications from grant projects, and the current and previous grantees that are planning to implement, are implementing, or have implemented the intervention. Please refer to the contact information to learn more about the intervention and how to access intervention materials.

Evidence-based intervention, evidence-informed intervention, evidence based, evidence, intervention, research, persons with dementia, caregivers, caregiver education, caregiver skills

This resource was updated on November 20, 2018.

File 2018 NADRC: Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

2018 NADRC:
Working Together: How Community Organizations and First Responders Can Better Serve People Living with Dementia

This guide helps community organizations collaborate with first responders to better serve people living with dementia, a need increasingly recognized by first responder agencies. This guide explains why this issue is gaining attention, provides strategies for building successful partnerships, and describes the types of programs that can benefit people living with dementia. Also included are resources such as training materials, sample policies, tip sheets and more.

First responders, community organizations, partnership, partnerships, collaboration, dementia, Alzheimer’s, people living with dementia, emergencies, planning, training.

2018 NADRC:
Working Together: How Community Organizations and First Responders Can Better Serve People Living with Dementia

This guide helps community organizations collaborate with first responders to better serve people living with dementia, a need increasingly recognized by first responder agencies. This guide explains why this issue is gaining attention, provides strategies for building successful partnerships, and describes the types of programs that can benefit people living with dementia. Also included are resources such as training materials, sample policies, tip sheets and more.

First responders, community organizations, partnership, partnerships, collaboration, dementia, Alzheimer’s, people living with dementia, emergencies, planning, training.

File 2018 NADRC: Working Together: How Community Organizations and First Responders Can Better Serve People Living with Dementia

2018 NADRC:
Disaster Planning Toolkit for People Living with Dementia

Living with Alzheimer’s disease and other related dementias can make it hard to cope with disasters such as severe weather, fires, floods, earthquakes, and other emergencies. The Disaster Planning Toolkit for People Living with Dementia is written to help people living with dementia, their family members, and their caregivers understand what to expect in the event of a disaster and how to prepare for it. The toolkit is made up of seven tip sheets and checklists for persons living with dementia, their families, and others who interact with them, including friends and neighbors. The sections cover the following topics: Planning for a Disaster, Important Contacts, Emergency Supplies Checklist, My Medical Conditions and Care Needs, Disaster Planning Tips for People Living Alone with Dementia, Planning for after a Disaster, and Tips for Communication and Responding to Dementia Symptoms. An individual is able to fill in the Important Contacts and My Medical Conditions and Care Needs sections by using a computer or printing the form out and writing on it.

Please use Internet Explorer when opening the toolkit and forms in order to fill them out, save and print.

Disaster Planning: disaster, preparedness, natural disaster, fire, hurricane, flood, earthquake, pandemic, terrorism, emergency, emergency responders, living alone, emergency supplies, dementia, Alzheimer’s disease, planning, advance planning.

PDF icon Full Toolkit

2018 NADRC:
Disaster Planning Toolkit for People Living with Dementia

Living with Alzheimer’s disease and other related dementias can make it hard to cope with disasters such as severe weather, fires, floods, earthquakes, and other emergencies. The Disaster Planning Toolkit for People Living with Dementia is written to help people living with dementia, their family members, and their caregivers understand what to expect in the event of a disaster and how to prepare for it. The toolkit is made up of seven tip sheets and checklists for persons living with dementia, their families, and others who interact with them, including friends and neighbors. The sections cover the following topics: Planning for a Disaster, Important Contacts, Emergency Supplies Checklist, My Medical Conditions and Care Needs, Disaster Planning Tips for People Living Alone with Dementia, Planning for after a Disaster, and Tips for Communication and Responding to Dementia Symptoms. An individual is able to fill in the Important Contacts and My Medical Conditions and Care Needs sections by using a computer or printing the form out and writing on it.

Please use Internet Explorer when opening the toolkit and forms in order to fill them out, save and print.

Disaster Planning: disaster, preparedness, natural disaster, fire, hurricane, flood, earthquake, pandemic, terrorism, emergency, emergency responders, living alone, emergency supplies, dementia, Alzheimer’s disease, planning, advance planning.

PDF icon Important Contacts

2018 NADRC:
Disaster Planning Toolkit for People Living with Dementia

Living with Alzheimer’s disease and other related dementias can make it hard to cope with disasters such as severe weather, fires, floods, earthquakes, and other emergencies. The Disaster Planning Toolkit for People Living with Dementia is written to help people living with dementia, their family members, and their caregivers understand what to expect in the event of a disaster and how to prepare for it. The toolkit is made up of seven tip sheets and checklists for persons living with dementia, their families, and others who interact with them, including friends and neighbors. The sections cover the following topics: Planning for a Disaster, Important Contacts, Emergency Supplies Checklist, My Medical Conditions and Care Needs, Disaster Planning Tips for People Living Alone with Dementia, Planning for after a Disaster, and Tips for Communication and Responding to Dementia Symptoms. An individual is able to fill in the Important Contacts and My Medical Conditions and Care Needs sections by using a computer or printing the form out and writing on it.

Please use Internet Explorer when opening the toolkit and forms in order to fill them out, save and print.

Disaster Planning: disaster, preparedness, natural disaster, fire, hurricane, flood, earthquake, pandemic, terrorism, emergency, emergency responders, living alone, emergency supplies, dementia, Alzheimer’s disease, planning, advance planning.

PDF icon My Medical Conditions and Care Needs

2018 NADRC:
Education Resources for Persons Living with Dementia and Family Caregivers

The education resources include links to web pages, message boards, blogs, and videos to assist people living with dementia and family caregivers as they navigate changes in cognition and ability to manage daily activities. The education resources were reviewed by the National Alzheimer’s and Dementia Resource Center. They are 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.

Also: Person living with dementia, caregivers, care giver, caregiving, family, spouse, informal, education, resources, information. Decision Making: autonomy, capacity, care planning, competency, ethics, financial capacity, informed consent, shared decision-making, care; Care Transitions: care management, care planning, end of life, end-of-life, hospice, hospitalization, palliative, transition

2018 NADRC:
Education Resources for Persons Living with Dementia and Family Caregivers

The education resources include links to web pages, message boards, blogs, and videos to assist people living with dementia and family caregivers as they navigate changes in cognition and ability to manage daily activities. The education resources were reviewed by the National Alzheimer’s and Dementia Resource Center. They are 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.

Also: Person living with dementia, caregivers, care giver, caregiving, family, spouse, informal, education, resources, information. Decision Making: autonomy, capacity, care planning, competency, ethics, financial capacity, informed consent, shared decision-making, care; Care Transitions: care management, care planning, end of life, end-of-life, hospice, hospitalization, palliative, transition

File 2018 NADRC: Education Resources for Persons Living with Dementia and Family Caregivers

2018 NADRC:
Handbook for Helping People Living Alone with Dementia Who Have No Known Support

The Handbook for Helping People Living Alone with Dementia Who Have No Known Support provides practical guidance as well as tools for helping a person living alone who does not have informal supports, including people with dementia who have a caregiver that cannot provide support. The handbook includes practical strategies for identifying people who are living alone without support, assessing risk, building trust, identifying family and friends willing to help, determining decision-making capacity, options for helping the person maintain their independence, and the basics of guardianship or conservatorship.

Also: Living Alone: living alone with dementia, live alone, single, widowhood, unmarried, no support, no family, autonomy, capacity, care planning, competency, ethics, financial capacity, informed consent

2018 NADRC:
Handbook for Helping People Living Alone with Dementia Who Have No Known Support

The Handbook for Helping People Living Alone with Dementia Who Have No Known Support provides practical guidance as well as tools for helping a person living alone who does not have informal supports, including people with dementia who have a caregiver that cannot provide support. The handbook includes practical strategies for identifying people who are living alone without support, assessing risk, building trust, identifying family and friends willing to help, determining decision-making capacity, options for helping the person maintain their independence, and the basics of guardianship or conservatorship.

Also: Living Alone: living alone with dementia, live alone, single, widowhood, unmarried, no support, no family, autonomy, capacity, care planning, competency, ethics, financial capacity, informed consent

File 2018 NADRC: Handbook for Helping People Living Alone with Dementia Who Have No Known Support

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.

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Anger Frustration Fights Fact Sheet English/Spanish

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Bathing Fact Sheet English/Spanish

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Getting Lost Fact Sheet English/Spanish

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Hallucinations Fact Sheet English/Spanish

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Making Home Safe Fact Sheet English/Spanish

2015 Alzheimer's/Dementia Challenging Behavior 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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic, challenging

PDF icon Medications Fact Sheet English/Spanish

2016 ADI-SSS Project Profiles

This document provides a brief description of the ACL’s 2016 ADI-SSS grant projects: California - San Diego County FIRST Project to Improve Dementia-Capability; California - The Care Ecosystem: Person-Centered Care for People with Dementia and their Caregivers; California - Jewish Family Service Alzheimer’s Disease Initiative; California - San Francisco Alzheimer’s Disease Initiative—Specialized Supportive Services; Illinois - Illinois Department on Aging ADI-SSS Project; Missouri - Kansas City Collaborative to Enhance Access to Physical Activity and Behavioral Supports for Individuals with Alzheimer’s Disease and Related Dementias; Nevada - Nevada’s Alzheimer’s Disease Initiative-Specialized Supportive Services Project; Pennsylvania -Specialized Supportive Services for ADRD Consumers and Their Caregivers in the Lehigh Valley Region of Pennsylvania; Wisconsin - Outreach Specialist Project; Wisconsin - Dementia Capable Wisconsin: Creating New Partnerships in Dementia Care; Wyoming - Expansion and strengthening of supportive services for people living with dementia and their caregivers in Sheridan County, Wyoming.

Also: grant profile, grant profiles, descriptions

PDF icon 2016_ADI-SSS_Complete_Profiles.pdf

2016 ADSSP Project Profiles

This document provides a brief description of the ACL’s 2016 ADSSP grant projects: California - Cal MediConnect Dementia Program; Georgia - Expanding and Sustaining Dementia-Capable Services for People with Dementia and their Caregivers; Massachusetts - 2016 ADSSP Supplemental Funding Grant; Michigan - Developing Dementia Dexterity: Michigan’s Collaborative Approach; Nevada - ADSSP: Creating and Sustaining Dementia-Capable Service Systems for People with Dementia and their Family Caregivers; Texas - TexasTakes on Dementia (TxTD); Virginia - A Dementia-Capable Virginia: Expanding FAMILIES; Wisconsin - Expansion of current ADSSP project services to include culturally appropriate respite care and caregiver support through local libraries.

Also: grant profile, grant profiles, descriptions

PDF icon 2016_ADSSP_Complete_Profiles.pdf

ACL and NADRC Issue Brief (2014):
Dementia-capable States and Communities: the Basics

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.

Also: Dementia Capable: dementia-capability, staff training, identifying cognitive impairment, quality assurance, resource, service provision

PDF icon Dementia-Capable State and Communities: the Basics

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.

Also: Behavior: symptom, symptoms, mechanisms, moderate, early-stage, late-stage, non-pharmacological, non-pharmacologic

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.

Also: Non-pharmacological therapies: acupuncture, aromatherapy, art therapy, dance, music, play, horticultural, laughter, meditation, therapy therapeutic touch, Tai Ji/Chi, yoga,

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

Also: Live Alone: live-alones, single person, widowhood, unmarried

PDF icon Considerations_For_Those_Who_Live_Alone.pdf

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