Reports and Toolkits

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Description File

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 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

People with dementia who live alone are at high risk for self-neglect, malnutrition, medication errors, financial exploitation, and other unmet care needs. Identifying people living alone with dementia is a primary challenge to meeting their needs. This report provides background on the prevalence of people living alone with dementia, availability of a family caregiver, and the types of unmet care needs individuals experience. Authors emphasize the importance of ensuring safety and supporting autonomy and provide a range of innovative policies and practices.

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, closed grant report, closed grant.

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, closed grant report, closed grant.

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:
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.

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.

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 2018EducationResourcesPWDandCGfinal_508.docx

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

2019 NADRC
Intellectual and Developmental Disabilities and Dementia: Practical Strategies for Professionals

Intellectual and Developmental Disabilities and Dementia: Practical Strategies for Professionals provides background and strategies for professionals—from both the intellectual and developmental disability and aging communities—when working with individuals living with intellectual and developmental disabilities (IDD) and dementia. The guide is organized into 12 sections that address different aspects of identifying and providing services to individuals living with IDD and dementia or who are at risk of developing dementia. The guide also includes tools professionals can share with family caregivers or other caregivers who work with individuals living with IDD and dementia. In addition to strategies, each section includes resources that professionals and caregivers can consult for further information related to the specific section topic.

Key words: IDD, intellectual and developmental disability, Down syndrome, dementia, Alzheimer’s, assessment, communication, behavioral symptoms, environmental modifications, coordination of care, coordination of services, advance planning, decision making, family caregivers

File Intellectual and Developmental Disabilities and Dementia: Practical Strategies for Professionals

2019 NADRC :
Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees

The purpose of this paper is to provide background on dementia-capable states and communities by presenting the need for dementia capability and outlining its evolution. This paper provides snapshots of dementia-capable programs across the United States resulting from the Administration for Community Living (ACL) dementia grants. This is not a comprehensive review of all work conducted by ACL grants but provides illustrative examples of dementia capability efforts. The paper outlines the components of a model dementia capable system, guides readers through the development of dementia-capable systems, and provides examples of dementia-capable practices at both state and community levels.

Key Words: dementia capable, dementia-capability, staff training, identifying cognitive impairment, quality assurance, resource, service provision,

2019 NADRC :
Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees

The purpose of this paper is to provide background on dementia-capable states and communities by presenting the need for dementia capability and outlining its evolution. This paper provides snapshots of dementia-capable programs across the United States resulting from the Administration for Community Living (ACL) dementia grants. This is not a comprehensive review of all work conducted by ACL grants but provides illustrative examples of dementia capability efforts. The paper outlines the components of a model dementia capable system, guides readers through the development of dementia-capable systems, and provides examples of dementia-capable practices at both state and community levels.

Key Words: dementia capable, dementia-capability, staff training, identifying cognitive impairment, quality assurance, resource, service provision,

File Dementia Capable States and Communities: Lessons Learned from Administration on Aging Grantees

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

2019 NADRC:
Grantee-Implemented Evidence-Based and Evidence-Informed Intervention

This compendium resource consists of a list of evidence-based and evidence-informed interventions that meet the Administration for Community Living (ACL) criteria and have been implemented by Alzheimer’s Disease Supportive Services Program (ADSSP), Alzheimer’s Disease Initiative Specialized Supportive Services (ADI-SSS) and Alzheimer’s Disease Program Initiative (ADPI) grantees between 2007-2018. Grantees are not required to choose an intervention from this table. This table can provide guidance about interventions that have already been implemented in the community by grantees that have similar goals to support people living with dementia and their caregivers.

For each intervention, we provide 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 as of August 2019. 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, education, training, caregiver education, caregiver skills, caregiver training.

File Grantee-Implemented Evidence-Based and Evidence-Informed Interventions

2019 NADRC:
Measuring the Impact of Dementia Friendly Education and Training Sessions: A Toolkit

Description:
This toolkit contains brief tools to measure the impact of dementia-friendly training and education efforts. With a focus on knowledge, attitudes, and behavior or practice change outcomes, the toolkit contains two tools. One tool is suitable to use with dementia-friendly education and training sessions for individuals, and the other is suitable to use with dementia-friendly education and training sessions for organizations or sectors. Also available is a set of instructions for the use, scoring, and reporting of the brief tools, and an annotated version of the tools (documenting the sources of the individual questions).

The webinar recording can be accessed at: https://nadrc.acl.gov/node/174

Keywords: dementia friendly; training; education; evaluation; impact; outcomes; measure; Alzheimer’s disease; dementia; knowledge; attitudes; behavior; practice change; dementia friends; dementia friendly communities; dementia capability

File Measuring the Impact of Dementia-Friendly Education and Training Sessions: A Toolkit

2019 NADRC:
Measuring the Impact of Dementia Friendly Education and Training Sessions: A Toolkit

Description:
This toolkit contains brief tools to measure the impact of dementia-friendly training and education efforts. With a focus on knowledge, attitudes, and behavior or practice change outcomes, the toolkit contains two tools. One tool is suitable to use with dementia-friendly education and training sessions for individuals, and the other is suitable to use with dementia-friendly education and training sessions for organizations or sectors. Also available is a set of instructions for the use, scoring, and reporting of the brief tools, and an annotated version of the tools (documenting the sources of the individual questions).

The webinar recording can be accessed at: https://nadrc.acl.gov/node/174

Keywords: dementia friendly; training; education; evaluation; impact; outcomes; measure; Alzheimer’s disease; dementia; knowledge; attitudes; behavior; practice change; dementia friends; dementia friendly communities; dementia capability

File Brief Tool for Dementia-Friendly Education and Training Sessions

2019 NADRC:
Measuring the Impact of Dementia Friendly Education and Training Sessions: A Toolkit

Description:
This toolkit contains brief tools to measure the impact of dementia-friendly training and education efforts. With a focus on knowledge, attitudes, and behavior or practice change outcomes, the toolkit contains two tools. One tool is suitable to use with dementia-friendly education and training sessions for individuals, and the other is suitable to use with dementia-friendly education and training sessions for organizations or sectors. Also available is a set of instructions for the use, scoring, and reporting of the brief tools, and an annotated version of the tools (documenting the sources of the individual questions).

The webinar recording can be accessed at: https://nadrc.acl.gov/node/174

Keywords: dementia friendly; training; education; evaluation; impact; outcomes; measure; Alzheimer’s disease; dementia; knowledge; attitudes; behavior; practice change; dementia friends; dementia friendly communities; dementia capability

File Brief Tools for Dementia-Friendly Education and Training Sessions: Instructions

2019 NADRC:
Measuring the Impact of Dementia Friendly Education and Training Sessions: A Toolkit

Description:
This toolkit contains brief tools to measure the impact of dementia-friendly training and education efforts. With a focus on knowledge, attitudes, and behavior or practice change outcomes, the toolkit contains two tools. One tool is suitable to use with dementia-friendly education and training sessions for individuals, and the other is suitable to use with dementia-friendly education and training sessions for organizations or sectors. Also available is a set of instructions for the use, scoring, and reporting of the brief tools, and an annotated version of the tools (documenting the sources of the individual questions).

The webinar recording can be accessed at: https://nadrc.acl.gov/node/174

Keywords: dementia friendly; training; education; evaluation; impact; outcomes; measure; Alzheimer’s disease; dementia; knowledge; attitudes; behavior; practice change; dementia friends; dementia friendly communities; dementia capability

File Brief Tool for Dementia-Friendly Education and Training Sessions: Organizational or Sector Trainings

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.

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

2019 Alzheimer's/Dementia Caregiver Tip Sheets in English/Spanish/Chinese/Japanese

These fifteen Alzheimer's/Dementia plain language tip sheets were developed to assist caregivers in managing challenges associated with caregiving.
These fact sheets were developed by Alzheimer's Los Angeles as part of an AOA grant.
• Alzheimer’s Los Angeles plain language Caregiver Tip Sheets may be reproduced, co-branded, or both with the following restrictions:
Written permission needs to be granted by Alzheimer’s Los Angeles for co-branding. Contact Debra Cherry, PhD at dcherry@alzla.org (link sends e-mail).
• Alzheimer’s Los Angeles materials and resources cannot be sold in their original or modified form.
• The plain language tips sheets listed below may be found on the Alzheimer’s Los Angles webpage, here: https://www.alzheimersla.org/caregiver-tip-sheets/

New Files:
IDEA! Strategy Fact Sheet English/Spanish
Anger, Frustration & Fighting Fact Sheet English/Spanish
Anxiety Fact Sheet English/Spanish
Bathing Fact Sheet English/Spanish
Communication Fact Sheet English/Spanish
Driving Fact Sheet English/Spanish
Getting Lost Fact Sheet English/Spanish
Hallucinations Fact Sheet English/Spanish
Keeping Home Safe Fact Sheet English/Spanish
Medications Fact Sheet English/Spanish
Paranoia Fact Sheet English/Spanish
Repeating Fact Sheet English/Spanish
Resistance Fact Sheet English/Spanish
Sundowning Fact Sheet English/Spanish
Toileting Fact Sheet English/Spanish

Anger, Frustration & Fighting Fact Sheet Japanese
Bathing Fact Sheet Japanese
Communication Fact Sheet Japanese
Driving Fact Sheet Japanese
Getting Lost Fact Sheet Japanese
Hallucinations Fact Sheet Japanese
Keeping Home Safe Fact Sheet Japanese
Medications Fact Sheet Japanese
Paranoia Fact Sheet Japanese
Repeating Fact Sheet Japanese
Sundowning Fact Sheet Japanese
Toileting Fact Sheet Japanese

IDEA! Strategy Fact Sheet Chinese
Anger, Frustration & Fighting Fact Sheet Chinese
Anxiety Fact Sheet Chinese
Bathing Fact Sheet Chinese
Communication Fact Sheet Chinese
Driving Fact Sheet Chinese
Getting Lost Fact Sheet Chinese
Hallucinations Fact Sheet Chinese
Keeping Home Safe Fact Sheet Chinese
Medications Fact Sheet Chinese
Paranoia Fact Sheet Chinese
Repeating Fact Sheet Chinese
Resistance Fact Sheet Chinese
Sundowning Fact Sheet Chinese
Toileting Fact Sheet Chinese

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

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