The Guiding an Improved Dementia Experience (GUIDE) Model is a voluntary nationwide model test that aims to support people with dementia and their unpaid caregivers. The model began on July 1, 2024, and will run for eight years. Visit the Centers for Medicare & Medicaid Services website for more information.

The GUIDE Model focuses on comprehensive, coordinated dementia care and aims to improve quality of life for people with dementia, reduce strain on their unpaid caregivers, and enable people with dementia to remain in their homes and communities. It will achieve these goals through Medicare payments for a comprehensive package of care coordination and care management, caregiver education and support, and respite services.

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.

With funding from The Nevada Division of Public and Behavioral Health under the BOLD Infrastructure Act, the DEER Program worked in collaboration with six people living with dementia to develop a Dementia Self-Management Guidebook.

If you have been diagnosed with a dementia-related condition, then it is important to know: you can live well with dementia. This Dementia Self-Management Guidebook, based on the science of chronic disease self-management, was developed in partnership with six advisors who are living well with dementia. Specifically designed and formatted for people who are living with dementia, each module provides current information and aims to assist you in developing personalized strategies to live your best life. This Guidebook will also introduce you to helpful community resources recommended by our advisors to aid you in managing and adjusting to life after a diagnosis.

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.

Reimagining Dementia: A Creative Coalition for Justice is an international group of people living with dementia, carers/care partners, family and community members, dementia activists and allies, health professionals, advocates, artists, academics, policymakers, and others. They share a vision of care and support that promotes inclusion, relationships, creativity, joy and the possibility of growth for everyone impacted by dementia. Membership is open to all.

Dementia Alliance International (DAI) is a collaboration of like-minded individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia.

Membership is free and only for people medically diagnosed with any type of dementia- from any country.

Flipping Dementia Stigma toolkit was created to recognize and respond to stigma and discrimination. It has been designed by people living with dementia to help others – including other people living with dementia, the people who support them, and those who do research – to address the challenges of stigma and discrimination.

A extraordinary cookbook by and for people living with dementia. The cookbook includes information about organizing your kitchen to make it dementia-friendly, nutritional and healthy diet information, protective kitchen aides and much more.

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.

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.

The American Stroke Association is a relentless force for a healthier world with fewer strokes — the No. 2 cause of death worldwide and a leading cause of disability.

Available resources include: tips to manage vascular dementia, factors and symptoms, and Life After Stroke Guide.

Stroke Family Warmline:
1-888-4-STROKE or 1-888-478-7653
Monday-Friday: 8AM-5PM CST

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances.

Available resources for you include: understanding what is Lewy Body Dementia (diagnosis, prognosis, 10 things to know), support groups, diagnostic symptoms checklist, LBD stories, and avice for people living with Lewy Body Dementia.

The Dementia Action Alliance is a diverse coalition of passionate people creating a better society in which to live with dementia.

DAA offer services and peer supports including three weekly online discussion groups, two monthly podcasts, an online Resources Center, a national Speakers Bureau and other services. All DAA efforts and activities are shaped and informed by individuals living with dementia.

The mission of Voices of Alzheimer's: Empowering people living with or at risk of Alzheimer’s and other cognitive illnesses, united by urgency, to drive equitable access to innovation in treatment and care. The advocacy priority is to ensure that current and new diagnostic tools and treatments for Alzheimer’s, once approved by the FDA, are accessible through Medicare to people across the country. You can access advocacy materials, press relsease, and learn how you can become involved.

In connecting with AFTD, you’ve found a community of people who understand, and are a source of information, resources, help, and hope for a better future. An FTD diagnosis can be overwhelming in many ways. AFTD's "Newly Diagnosed Checklist" was created to guide persons diagnosed and their families on steps to take to help adjust to the changes ahead.

AFTD provides resources to help you understand FTD and ways to stay active, engaged, and become informed about services, supports, and some emerging treatments that can maximize quality of life. Contact AFTD's HelpLine at 1-866-507-7222 or email info@theaftd.org.

The University of Pittsburgh Alzheimer's Disease and Research Center performs and coordinates AD-related clinical and research activities and is a core source of support (e.g., resources, patients, tissue, expert consultation for research, clinical and training activities) regionally and nationally.
Through outpatient evaluations, participants and their families receive state-of-the-art diagnostic assessments and contribute to the scientific study of Alzheimer’s disease.

The Penn Memory Center is a single, unified Penn Medicine source for those age 65 and older seeking evaluation, diagnosis, treatment, information, and research opportunities related to symptoms of progressive memory loss, and accompanying changes in thinking, communication and personality.

Penn Memory Center offers state-of-the-science diagnosis, treatment and research, focusing on individuals with Alzheimer’s disease, mild cognitive impairment (MCI) and other age-related progressive memory disorders.