This section offers a variety of tools and resources that you may use:
"on the go" in your work with family caregivers
to enhance your own knowledge on family caregiving
The formats of these tools vary as they range from articles, to curricula to audio and visual files. We encourage you to search through the various subsections to identify the tool that accommodates your need and practice. Regardless of format, resources have been grouped into the following topic areas: Education and Training; Assessment; Respite; Driving; Transitional Care; Difficult Behaviors; and End of Life.
To access the information you are interested in, click on a link below to a specific entry. Alternatively, you may do an “Advanced Search” by keyword (see sidebar on the left).
Assessment
Caregiver Assessment: Volume I: Principles, Guidelines and Strategies for Change, Volume II: Voices and Views from the
Field
Report from a National Consensus Development Conference (convened by the Family Caregiver Alliance's National Center on Caregiving in 2005) which explains the key principles and guidelines for caregiver assessment, as well as background information.
Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers
Based on the work from a National Consensus Development Conference (convened by the Family Caregiver Alliance's National Center on Caregiving in 2005), this toolkit equips professionals for developing and implementing an appropriate caregiver assessment process in practice settings.
Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities
A 21-page booklet that guides families of people with dementia who are residing in a care facility by providing tips in addressing care planning needs. This guide is also useful for long-term care staff members who wish to educate families about the care planning process and care issues related to late and final stages.
Source Alzheimer's Association
Greater Illinois Chapter
Guidelines for Initiating Meaningful, Quality Home Visits with People Who Have Alzheimer's Disease and Related Dementia
Strategies for human service professionals conducting assessments and other types of interviews with people who have dementia and reside in the community.
Source Wisconsin Department of Health and Family Services
How to Try This
Translates the evidence-based geriatric and caregiver assessment tools in the Try This: Best Practices in Nursing Care to Older Adults series into cost-free, web-based resources.
Source Hartford Institute for Geriatric Nursing
American Journal of Nursing
Knowledge and Skills Needed for Dementia Care: A Guide for Direct Care Workers in Everyday Language
A dementia care guide helps direct care workers determine whether they have the skills they need to deliver person centered dementia care. It also helps supervisors, policy makers and others evaluate dementia care training programs
Behavioral and Psychiatric Symptoms of Alzheimer's Disease
Behavioral issues can be one of the most challenging aspects in providing care for someone with Alzheimer's disease or other related dementia. This guide provides an overview of how behavioral issues manifest in someone with dementia, the causes and treatment.
This video explains step by step how to assist a person bathe in bed. Offers tips on how to make the process easier and safer for the caregiver and care receiver.
Source YouTube
Caregiver's Guide to Understanding Dementia Behaviors
Fact Sheet offers insight on the causes of challenging behaviors, such as wandering, and offers specific tips for communicating with a person with dementia and handling difficult behaviors.
Caring for Adults with Cognitive and Memory Impairments
Fact sheet provides an overview of the caregiving experience as well as ten steps to develop a plan to caring for an adult with cognitive and memory impairment.
Leader's manual describes the methods for conducting an 8-week class that teaches family caregivers the basic steps for learning to relax, to control their negative thoughts, and to act assertively when necessary. Leader and participant manuals available in English and Spanish.
Website provides information on best practices and home safety for dementia care. It includes social network Home Safety-Virtual Care section that allows visitors to explore solutions to home safety and daily care issues.
How to Respond When Dementia Causes Unpredictable Behaviors
Alzheimer's disease is a distinct disease, that results in a person's diminishing capacity to remember, think, reason, perceive, and make judgments. This guide provides useful information on how to navigate difficult behaviors of an individual due to Alzheimer's disease and other types of dementia.
A series of videos for professionals working with dementia
patients which help providers learn to spot situations, words, and behaviors that often lead to problems. Techniques are presented for solving problems and even preventing problems before they occur.
Source Oregon Center for Applied Science
(available through HealthComm Interactive)
Driving
Dementia and Driving
Fact sheet discusses the many issues around dementia and older drivers. Includes tips on how to monitor driving skills of older drivers, strategies to reduce the need of driving and last resort techniques.
Evaluation and Management of Driving Risk in Dementia
Guidelines for the assessment of risk for drivers with dementia, from the American Academy of Neurology (AAN), provide key information to people with dementia, their families and health care providers.
Additional guidelines are available from AAN's website: www.aan.com/guidelines
Old People Driving : A film about the end of the road
This heartfelt documentary features Milton (age 96) and Herbert (age 99) as they confront the end of their driving years. In 2010, Old People Driving received the Margaret and William Hearst Award for Excellence in Documentary Film and an honorable mention from the Los Angeles International Film Festival.
Promotes older driver safety awareness, education, and practices through Area Agencies on Aging. Activities of the project include
providing information and materials on older driver best practices, developing a technical assistance peer exchange program, and conducting national training sessions on older driver safety.
Source School of Social Work at University at Albany
State University of New York (SUNY)
A Toolkit for Serving Diverse Communities
This comprehensive toolkit (134 pages) provides an easy-to-use method for providing respectful, inclusive, and sensitive services for any diverse community. The guide provides strategies on how to incorporate these principles into your everyday service delivery practice and program planning. The toolkit also contains a list of valuable resources.
The video is an excerpt from Burnout Among Caregivers for the Centers for Medicare and Medicaid. It offers insight on subjects such as caregiver burnout and family dynamics.
Source YouTube
Care for the Family Caregiver: A Place to Start
This booklet serves family caregivers seeking an overview of caregiving issues, tips, self-care, legal and financial issues, and resources.
Source HIP Health Plan of New York
National Alliance for Caregiving
Caregiver Depression: A Growing Mental Health Concern
Policy Brief discusses the factors contributing to high levels of clinical depression among family caregivers, describes barriers to treatment and promising approaches to alleviating symptoms, and
suggests policies to support family caregivers.
Caregiver Education and Support Programs: Best Practice Models
A report which describes five widely used caregiver programs that have empirical evidence to support their effectiveness. Includes information about how to obtain materials for these programs.
Trains professionals to lead education and support groups for caregivers of frail elders with chronic disabilities or dementia. Teleconference version, as well as a leader manual and participant workbook are available. Contact the Institute of Gerontology at the University at Albany, State University of New York (SUNY) for materials.
Source Institute of Gerontology at the University at Albany
State University of New York (SUNY)
Caregiver's Broadcast
A video from Ask Medicare highlights programs and resources that benefit and enhance the caregivers well being.
Source YouTube
Caregiving 101: Exploring the Complexities of Family Caregiving
Archived webinar by the National Center on Caregiving at Family Caregiver Alliance. The webinar offers insight on the characteristics of family caregivers, contributing factors to caregiver stress, emerging issues and barriers that affect family caregivers and the importance of validating the family caregiver experience. Listeners of the webinar will gain a better understanding of the challenges and benefits facing family caregivers. This webinar is useful for staff and volunteers who are interested in gaining a broad understanding of what it means to be a family caregiver.
Source National Center on Caregiving
Family Caregiver Alliance
Caregiving and Depression
Fact sheet discusses depression and how it affects the vulnerable population of caregivers. Helps caregivers recognize the symptoms of depression and offers resources for its prevention and treatment.
Source The Copper Ridge Institute
The Johns Hopkins University School of Medicine
Caring for a Person With Alzheimer's Disease: Your Easy to Use Guide from the National Institute on Aging
This easy to use guide helps family caregivers understand and cope with the many challenges of caring for a person with Alzheimer's disease. The guidebook begins with quotes from caregivers who were part of support groups at Duke University.
Caring for You, Caring for Me: Education and Support for Family and Professional Caregivers
Curriculum designed for professionals who lead groups and/or conduct educational or training programs for caregivers across disease/disability groups throughout the lifespan. Program Guide to help professionals lead the 10-hour program (five 2-hour modules) and a one-day Leader Preparation Workshop are available.
Source Easai, in cooperation with AARP, Interfaith Caregivers Alliance, United Way, Hospice Association of America, the Alzheimer's Association, National Alliance for Caregiving, National Family Caregivers Association, and Towson University
Chronic Disease Self-Management Program
Training and materials for facilitators and master trainers. Also available in Spanish and other languages.
Source Oregon Center for Applied Science
HealthComm Interactive
Controlling Frustration: A Class for Caregivers
Leader's manual describes the methods for conducting an 8-week class that teaches family caregivers the basic steps for learning to relax, to control their negative thoughts, and to act assertively when necessary. Leader and participant manuals are also available in Spanish.
Dr. Bruce Miller of the University of California, San Francisco provides information about symptoms and causes of Alzheimer's disease and Frontotemporal Dementia (FTD). Viewers will also learn about distinct characteristics of Alzheimer's disease and FTD.
Disaster Guide for Caregivers and Their Loved Ones with Dementia: Calm Before the Storm
This handbook provides information and tools to caregivers on how to start the conversation about planning for a natural disaster with loved ones with dementia. The guide includes an overview of strategic planning for a natural disaster, what contents should be included in a disaster kit, checklist for a substitute caregiver, working with loved one's insurers in the aftermath, and other valuable resources.
A comprehensive guide for family caregivers caring for older adults at home, this tool offers information on caregiving, physical problems, mental/social problems, and managing care. A plain-text version of the materials is available free online. Also available for purchase are workbook for personal at-home use and a presentation package with a CD-ROM of PowerPoint presentations, fully illustrated hand-outs, and a workbook (includes permission to reproduce and distribute the illustrated hand-outs).
Source American Geriatrics Society Foundation for Health in Aging
ElderStay @ home Certified Home Caregiver Training Program
A training program for home care workers which includes class schedules, a teacher's guide and course materials, along with 3 DVDs. Provides instruction for 4 levels of providers: Elder Pal, Dementia and Alzheimer's Training, Personal Care Assistant, Home Care Assistant.
This online source is a valuable tool for professionals who work directly with family caregivers by providing information on caregiving facts, tips on how to communicate effectively with caregivers, caregiving research and interventions, assessment tools, resources, and strategies on how to advocate for caregiving issues. Family caregivers may also find this online tool helpful in navigating caregiving issues.
A 60-page booklet explores various concepts such as the changing roles and relationships between the care provider and recipient, detailed guidelines on how provide day-to-day care, safety in the home, enhancing daily life, the emotional challenges of caregiving, tips on how to ask for assistance, residential care options and other valuable resources.
Source Washington State Department of Social & Health Services
Aging & Disability Services Administration
Family Caregiving: State of the Art, Future Trends. Report from a National Conference.
The proceedings from a national conference hosted by the
National Center on Caregiving at Family Caregiver Alliance (FCA) which brought together key experts to discuss cutting edge research, explore effective service interventions and identify emerging issues that affect family caregivers and those for whom they care. It includes summaries of all presentations made at the
workshops: Caregiver Assessment; Workforce Issues; Caregiver Health; Diverse Caregiver Populations; Leading Edge Caregiver Interventions; and Integration of Caregivers in the Health Care System.
Source National Center on Caregiving
Family Caregiver Alliance
Helping Families Make Everyday Care Choices (for Providers)
Fact Sheet discusses the unique issues facing people with dementia and their families and offers professionals guidelines for their work with informal caregivers.
Helping Older Adults Search for Health Information Online: A Toolkit for Trainers
Free materials for professionals who work with older adults
to help them find reliable, up-to-date online health information on their own. Includes lesson plans, flyers and a short online video clip.
Source National Institutes of Health-Senior Health
Home Safety for People with Alzheimer's Disease
The booklet explores home safety for individuals with Alzheimer's disease or other types of dementia. The guide provides insight on how to recognize potential safety issues and possible solutions to help prevent accidents.
Translates the evidence-based geriatric and caregiver assessment tools in the Try This: Best Practices in Nursing Care to Older Adults series into cost-free, web-based resources.
Source Hartford Institute for Geriatric Nursing
American Journal of Nursing
Just in Case: Emergency Readiness for Older Adults and Caregivers.
Resources that address issues specific to emergency preparation for older adults and caregivers. Resources include fact sheets, a video and a presenter's guide.
Source Aging in Stride Prepared by the U.S. Administration
on Aging's National Family Caregiver Support Program
and Caresource Healthcare Communications, Inc.
Knowledge and skills needed for dementia care: A guide for direct care workers
This guide identifies the knowledge and skills direct care workers need when working with dementia patients in particular, and it includes an appendix with notes for trainers and supervisors of direct care workers. The guide describes seven competency areas, including knowledge of dementia disorders, person-centered care, interacting with families, and direct care workers' self-care.
Legal and Financial Planning for People with Alzheimer's Disease
Fact sheet discusses legal, financial and health issues for individuals with Alzheimer?s disease or other types of dementia. The fact sheet explores legal and financial concepts such a living trust, a will, advance directives, do not resuscitate documents, and durable power of attorney.
Source You Tube
UCSF Memory & Aging Center
University of California, San Francisco
Medication Management in Assisted Living Facilities
Multidisciplinary presentation and case discussion with power point slides on a web site. Some of the presentation hold a specific caregiver focus and discuss the family's involvement in managing medications and difficult behaviors.
The presentations are from a geriatrician, gero-pharmacist, gero nurse practitioner and a family advocate. The case discussion includes all four experts.
This database contains information on dementia as it pertains to early planning, changing behaviors, memory concerns, increasing communication skills, and the importance of self-care. Dementia information is available in a number of languages including Arabic, Armenian, Chinese, Croatian, Dutch, German, Greek, Hungarian, Italian, Macedonian, Maltese, Polish, Portuguese, Russian, Serbian, Spanish, Tagalog, Ukrainian, and Vietnamese.
Navigating the Care System: A Guide for Providers to Help Family Caregivers
Traces the development of the sometimes confusing array of programs and services in the U.S. health and long-term care system, and describes how service providers can help families pull the pieces together. Examines the challenges facing caregivers and offers a list of useful resources available to providers.
Provides evidence-based oncology nursing interventions for caregiver strain and burden that can be used in the clinical setting. Putting Evidence into Practice (PEP) cards summarize research on interventions. Website includes tables of evidence
and references.
Serving African American Families: Home and Community Based Services for People with Dementia and Their Caregiver
This toolkit provides information on how to provide culturally appropriate information, outreach efforts, education and resources for African American families coping with dementia.
Source Alzheimer's Disease Demonstration Grants to States National Resource Center
Serving Asian and Pacific Islander Families: Home and Community-Based Services for People with Dementia and Their Caregivers
This toolkit provides information on how to provide direct services to Asian and Pacific Islander (API) family careigivers of loved ones with dementia and provides valuable API resources.
A collection of videos, podcasts and articles about how personal support networks contribute to positive health outcomes for caregivers, seniors, people with disabilities, and those experiencing life challenges.
The videos shown on this channel are intended to educate patients, caregivers and health professionals about the various forms of neurodegenerative diseases.
Source You Tube
UCSF Memory & Aging Center
University of California, San Francisco
Working with Your Older Patient: A Clinician's Handbook
Free booklet that introduces physicians, nurses, and other health care professionals to communication skills essential in caring for older patients and their families. Includes specific information
on talking with patients and families about cognitive problems.
Intensive training program teaches professionals and volunteers to help caregivers find meaning, purpose and value in the end-of-life caregiving experience. Provides participants with
training materials needed to implement an effective caregiver training program in their community.
A better understanding of cardiopulmonary resuscitation, or CPR, can be helpful when it comes to making this difficult choice before a crisis occurs. This Fact Sheet specifically addresses the process of CPR and describes the DNR (Do Not Resuscitate) form, the legal document used to indicate to medical professionals your or your loved one's wishes.
End-of-Life Choices: Feeding Tubes and Ventilators
Families caring for a chronically ill loved one may eventually face very difficult decisions regarding medical treatment for the person in their care. The progression of many conditions Alzheimer's disease, Parkinson's disease, Amyotrophic Lateral Sclerosis or post-stroke, for example may lead to two of the most common such decisions: whether to use feeding tubes when a chronically ill person can no longer chew and swallow his or her food, and whether to use a ventilator when someone can no longer breathe on his or her own. The Fact Sheet provides caregivers with an understanding of the decisions surrounding the use feeding tubes and/or ventilators.
The Fact Sheet discusses the shifting emotions and considerations involved in holding on or letting go. Addressing these sensitive issues ahead of time will allow a person with a chronic illness to have some choice or control over his or her care, help families with the process of making difficult decisions, and may make this profound transition a little easier for everyone concerned.
Big issues confront us when we think about our own death or that of someone we love. Our attitudes and beliefs about religion, pain, suffering, loss of consciousness, and leaving behind those we love come into play. The Fact Sheet is not intended to provide a comprehensive planning tool but instead provides an outline of areas that need to be considered when faced with end-of-life issues.
This guide assists individuals and families by providing an overview of end of life issues that are commonly faced by loved ones. Readers of this booklet will find helpful information on providing comfort care, finding direct care, understanding and planning healthcare decisions, things to do when someone passes away, getting the assistance for your grief and valuable resources. A hardcopy of the booklet is also available for free.
A candid and insightful film, Facing Death provides viewers a glimpse into the difficult end-of-life choices individuals face during their stay at The Mount Sinai Medical Center in New York. This groundbreaking film follows patients and their loved ones as they make health decision between continuing treatment or comfort care.
Family Caregiver's Guide to Hospice and Palliative Care
The United Hospital Fund's Next Step in Care recently published a "Family Caregiver's Guide to Hospice and Palliative Care." Next Step in Care is a national campaign sponsored by the United Hospital Fund that aims to engage medical and long term care facilities, home health agencies, and patient advocacy groups to address a range of transition-related issues. The guide provides family caregivers with insight on the decision-making process when assisting a loved one's transition into hospice and palliative care.
Physician Orders for Life Sustaining Treatment (POLST)
Tool for effectively communicating the wishes of seriously ill patients to have or to limit medical treatment as they move from one care setting to another.
Online training program with six modules that teaches professionals how to facilitate basic advance care planning discussions with patients and families.
Historically, faith communities have been vital in supporting the community of which they are a part. In the early years of our nation, faith communities often provided the only existing social services, such as education and healthcare. Over time, however, this social involvement slowly diminished. As government increasingly met society's social and economic needs, faith communities began to limit their focus to society's spiritual needs. Today that focus is changing again, as a growing number of faith communities seek to serve not only the spiritual needs of their congregations but also the many different social needs in the larger community.
Source ARCH National Respite Network & Resource Center
The Technical Assistance Center for Lifespan Respite
Respite for Persons with Alzheimer's Disease or Related Dementia
Alzheimer's disease is a distinct disease, that results in a person's diminishing capacity to remember, think, reason, perceive, and make judgments. This fact sheet explores various types of respite care, activities and valuable resources for individuals with Alzheimer's disease or other types of dementia.
Source ARCH National Respite Network & Resource Center
The Technical Assistance Center for Lifespan Respite
Respite Services: Enhancing the Quality of Daily Life for Caregivers and Care Receivers
Online booklet that helps family caregivers assess their abilities and circumstances, encourages caregivers to use respite services and provides suggestions to make respite most effective.
This fact sheet explores the how-to's of screening, selecting, placing, and training volunteers. Outlines various ways that volunteers can be utilized and provides tips for retaining volunteers over time. In addition, the fact sheet highlights national and local volunteer hospice programs. Written by Kelly Tipler, consultant and Chair, TN Respite Coalition.
Source ARCH National Respite Network & Resource Center
The Technical Assistance Center for Lifespan Respite
Transitional Care
Advanced Illness Management Model
Hospice nurses, social workers and other team members provide
pain and symptom management, advance care planning, and end-of-life care to patients who are not yet ready for hospice or have refused hospice enrollment. (Available only through Sutter VNA & Hospice)
A model of transitional care delivered by master's level Advanced Practice Nurses (APNs), in conjunction with a physician, to elderly patients at high risk for poor post-discharge outcomes. The model of APN specialist transitional care includes comprehensive discharge planning and home follow-up to high-risk, high-cost, high-volume patient groups in order to improve postdischarge outcomes among this patient group.
Evidence-based educational guidelines for stroke survivors after discharge
An article in the June 2008 issue of the Journal of Neuroscience Nursing (Volume 40, Number 3) describes 39 comprehensive educational guidelines for stroke survivors and their family caregivers for the first six months after discharge from inpatient rehabilitation. In "Evidence-Based Educational Guidelines for Stroke Survivors After Discharge Home," Sharon Ostwald and colleagues explain that stroke patients are often discharged home soon after their stroke and that families are often ill-prepared for the full extent of caregiving responsibilities that are required. The guidelines were tested with 72 survivors and families during 1,150 home visits.
Hospital Admissions: How to Plan and what to Expect During the Stay
Written for family caregivers, this guide can help health care professionals to prepare patients and families for a hospital admission, whether planned or emergency.
Improving Care Transitions Projects from the California Healthcare Foundation (CHCF)
Provides information and links to the following care transition
projects funded by CHCF:
Coleman Care Transitions Intervention (CTI) pairs hospitals with community agencies in ten locations in California to support patients with specific tools and skills to take a more active role in their health care.
Physician Orders for Life-Sustaining Treatment (POLST) uses a standardized medical order form for health care professionals to indicate which types of life-sustaining treatment seriously ill patients want or don?t want if their condition worsens.
Transitional Care for High-Risk Elders takes a proven approach for reducing preventable rehospitalization of high-risk elders and tests whether similar outcomes can be achieved using a lowercost staffing model (using registered nurses instead of nurse practitioners).
Improving Hospital Discharge Through Medication Reconciliation and Education
A "discharge bundle" consisting of medication reconciliation forms, a checklist for patient-centered hospital discharge education, and a checklist for post-discharge. Hospitals nationwide have used Better Outcomes for Older Adults through Safer Transitions (BOOST) evidence-based method to organize and standardize the discharge process of older patients. Targeted audience: Physicians, nurses, pharmacists, quality and safety professionals, patients, caregivers.
Source U.S. Agency for Healthcare Research and Quality
Next Step in Care
Next Step in Care is an online resource that provides information and advice to help family caregivers and health care providers plan safe care transitions for patients. Search through the online "Guides and Lists" to identify the tool pertinent to your program's need. Materials are also available in Spanish.
A checklist from the Centers of Medicare & Medicaid Services for patients and caregivers preparing to leave a hospital, nursing home or other health care setting.
Podcast: Making Hospital Discharge Safer for Seniors
The podcast, Making Hospital Discharge Safer for Seniors, features current information and news from the U.S. Agency for Healthcare Research and Quality (AHRQ) as it pertains to discharge planning of elderly patients from a hospital stay to home. The podcast also covers information on how new technologies are assisting in creating a smoother transition for patients returning to the community.
Source U.S. Agency for Healthcare Research and Quality
Healthcare 411: News Series from AHRQ
What To Look for While Evaluating a Nursing Home for Someone with Alzheimer's Disease. Nursing Home Consumer Guide
This nursing home consumer guide provides insight and a convenient checklist on what type of inquires someone should make on behalf of an individual with Alzheimer's disease or related dementia who is considering a nursing home placement.
