I am living with dementia

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 Alzheimer's Association offers information on knowing with to expect after diagnosis, strategies to live well with Alzheimer's, education to learn more, and understanding through a number of support groups.

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.

The Alzheimer’s & related Dementias Education & Referral (ADEAR) Center is a service of the National Institute on Aging at the National Institutes of Health. Call 800-438-4380/ TTY: 800-222-4225 or email This email address is being protected from spambots. You need JavaScript enabled to view it. to talk with an information specialist.

Here you can find tips for living with dementia, locate support in your area, identify ways you can participate in research, and ways to maintain a healthy and active lifestyle.

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

Your local Area Agency on Aging will put you into contact with the programs and services in your area. This Locator Tool allows you to select your county from the drop-down menu to find contact information for the Area Agency on Aging serving your local area.

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 This email address is being protected from spambots. You need JavaScript enabled to view it..

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.

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.

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.

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.

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.

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.

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.

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.

National Council of Dementia Minds (NCDM) is the first national 501(c)(3) nonprofit organization founded and governed by persons living with dementia. They represent a group of individuals who are committed to living their best lives and sharing the experience with others. The vision is to transform the worldview of living with a Neurocognitive Disorder (NCD).

This extraordinary how-to manual provides essential information about living with dementia from 48 people living with dementia, care partners, and leading dementia specialists. The practical, helpful information, grounded in science, is presented in a user-friendly format.

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.

The Pennsylvania Department of Aging works to ensure that older adults across Pennsylvania have access to quality services and supports that help them age and live well.

The department provides a wide array of services and programs intended to help older Pennsylvanians live and thrive in their homes and communities for as long as possible. These services include home-delivered and congregate meals, caregiver support, health and wellness services, personal assistance, senior community centers, Medicare enrollment counseling, transportation, job training, elder abuse prevention, PACE prescription assistance and more.

The PA Link to Aging and Disability Resources is PA's effort designed to help persons with disabilities and seniors find information that will connect them to supports and services in their community. There is no charge for information and assistance provided by any PA Link or PA Link partner agency.

Call the PA Link to Aging and Disability Resource Center Toll-Free Helpline: 1-800-753-8827