One of FTD’s more troubling symptoms is the emergence of uncharacteristically aggressive behavior. Every case of FTD is different; and while aggression may not develop, it is still worth considering an approach for handling it just in case. Check out AFTD’s Managing Aggressive Behavior in FTD flyer. 

Guidance from the Association for Frontotemporal Degeneration on how to manage driving and Frontotemporal Dementia.

From The ARCH National Respite Network, this guide is information on how to plan for respite, information about the types of respite available, and answers to questions like

• How do I find and pay for Respite?
• How do I choose a respite program or provider?

The toolkit is a respite workforce recruitment, training, and retention program to better meet the needs of culturally and geographically diverse families, with particular attention to the impact of COVID-19 on the workforce.

This resource is from The Caregiver Action Network. The toolbox includes tips for issues faced by caregivers as well as supportive resources for those who are caregivers.

PA Family Network Family Advisors are located across Pennsylvania and are all people with disabilities or family members. Through its peer-peer workshops, mentoring services, and systems navigation PA Family Network helps families learn what they need to know and do, across the lifespan, to develop the supports and services needed to achieve an Everyday Life for the WHOLE family.

As language, perceptions and social norms change rapidly, it is becoming increasingly difficult for journalists and other communicators to figure out how to refer to people with disabilities. Even the term “disability” is not universally accepted. This style guide, which covers dozens of words and terms commonly used when referring to disability, can help. The guide was developed by the National Center on Disability and Journalism at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication and was last updated in the summer of 2021.

Equipping individuals and communities to be able to meaningfully engage with people living with dementia is a key component of DFA’s mission.  In our mutual commitment to foster connection and engagement, DFA is pleased to provide access to the Friends & Family Training on behalf of TimeSlips.

Friends & Family training is free and available to everyone!

TimeSlips for Friends & Family

Approx. 45 minutes
Cost: Free!

TimeSlips is a non-profit committed to ensuring that people have access to meaningful and purposeful engagement regardless of physical or cognitive ability – all the way to the end of life. Founded by MacArthur Fellow Anne Basting 25 years ago, TimeSlips has trained family, friends, and professional caregivers to use their inherent creativity to invite their care partners into meaningful expression.

Extensively researched, the TimeSlips improvisational methodology shows benefits of social connection and improved well-being for both care partners, with particular positive impact on people living with cognitive challenges.

The TimeSlips Friends & Family Training is designed for anyone looking to learn new ways to connect with a loved one experiencing cognitive changes. Created in collaboration with family caregivers, this Friends & Family training takes approximately 45 minutes to complete and will provide you with an introduction to TimeSlips and creative engagement tools that you can put to immediate use. The concepts taught in this module can be infused into any point of care, and will increase opportunities for joy and meaning in your care partnership.

TimeSlips is elated to share these resources with the Dementia Friendly America network!

Lewy body dementia (LBD), while progressive, is considered by experts to be a highly treatable form of dementia. Yet many LBD symptoms go untreated, leaving people with LBD and their loved ones struggling and living a reduced quality of life.

LBDA has created a helpful checklist to assist people diagnosed with LBD or their care partners report new or concerning LBD symptoms to the patient’s physician. This comprehensive checklist, which includes symptoms required for diagnosis plus many other symptoms common in LBD, allows a quick and simple way to document concerns in between office visits and facilitates information-sharing during appointments.

This free checklist can be downloaded and printed for unlimited use by both healthcare professionals and the general public.

This resource guide contains a range of tools, materials and information related to advanced care planning, including financial, housing, medical, legal, and palliative/hospice care assistance. It is the result of a comprehensive, environmental scan of available dementia specific advanced care planning resources.

This guide is intended to be used primarily by people living with dementia and their care partners. It should be used as a tool to help navigate and provide recommend actions for effective care, services, and considerations at various stages of cognitive impairment and dementia.

The Hartford Center for Mature Market Excellence® partnered with the MIT AgeLab to conduct research to bring clarity to the very serious and emotional issue of dementia and driving.

Access helpful free worksheets and At The Crossroads Guidebook which covers family conversations about dementia and driving, including driving activities worksheet, conversation planner worksheet, and agreement with my family worksheet.

SAGE is a national advocacy and services organization for LGBT elders. Sage offers a multitude of services and supports including:
• Advocacy for LGBT Elders
• HIV & Aging Policy Action Coalition (HAPAC)
• National Resource Center on LGBT Aging, including resources related to dementia
• SAGE Hotline- 1-877-360-LGBT(5428). The SAGE LGBTQ+ Elder Hotline is available 24 hours a day, 7 days a week, in English and Spanish, with translation in 180 languages.

The mission of the Alzheimer’s Foundation of America (AFA) is to provide support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and fund research for better treatment and a cure.

To help individuals take a proactive approach to brain health, AFA has a National Memory Screening Program which provides, free, confidential memory screenings at sites across the country.

The AFA Teal Room is a virtual space where individuals living with Alzheimer’s and their care partners can enjoy therapeutic programing, such as music, art, dance/movement therapy, and more. Additional services include support groups, education, and caregiver education.

AFA operates a National Toll-Free Helpline (866-232-8484), staffed entirely by licensed social workers, which provides support and assistance to callers, as well as connect them with resources in their area, no matter where in the United States they live.

FCA provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Ongoing support is available with FCA CareNav™,now on a digital service platform. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels.

Resources and books to help explain dementia to children and young people.

HFC is a national non-profit on a mission to care for families impacted by Alzheimer's disease, activate the next generation of Alzheimer's advocates, and be a leader in brain health research and education.

The HFC In-Home Care Grant Program relieves caregivers, giving them time to rest, recharge and focus on their personal and professional life. Delivered with their partner, Home Instead, HFC’s Care Grants provide 3-6 months of free, professional, in-home care.

HFC’s Online Support Groups are free and designed to help people who are navigating their way through any stage of an Alzheimer’s disease diagnosis. And they’re scheduled to fit with caregivers’ busy lives.

HFC provides free, educational, interactive, and informative online events throughout the year. We cover a range of topics to support you while you provide care to a loved one with Alzheimer’s - especially around your own health and well-being!

A variety of resources are available including:

-Communication cards: The Communication Cards depict a wide range of daily activities and situations and can be used to prompt discussion, assist with directions, or clarify needs, etc.

- Interpreter Cards: Multilingual wallet-sized cards to assist people with requesting interpreter services.

An interactive experience that allows you to click on images to learn about challenges with dementia in common scenarios along with tips on how to support those living with dementia in the community.

Additional resources on brain health, Dementia Friends, and healthy aging are available. IA² is a nonprofit focused on improving the health and well-being of American Indians, Alaska Natives and other indigenous people as they move through the aging spectrum.

The mission of the CJD Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. Family support including HelpLine, referrals, support groups, and education for families and caregivers, and family workshops.

Call the CJD HelpLine at 1-800-659-1991, or email help@cjdfoundation.org.

With a focus on younger-onset dementia, Lorenzo’s House is designed to empower, align and sustain family carepartners and their loved ones. Lorenzo’s House offers a carepartner companion match, youth initiatives, respite and healing spaces, that address the social and clinical needs of families living with young-onset dementia.

Healing Spaces reimagines what respite can look and feel like. We design in-person and virtual programming for the entire family to help sustain and empower carepartners everywhere.

Carepartner Connections is a proven peer-to-peer match model designed for carepartners, youth, and those who have lost a loved one. Our community network provides a personalized match of one-on-one connection with someone who understands.