I am a care partner, family member or friend

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.

AARP Family Caregiving Guides are designed to help develop and implement a caregiving plan for a loved one or friend. The guides include: Information on how to have vital conversations, ways to assess your loved one's needs, tips for organizing important documents, a roundup of federal and national resources, information on caring for yourself, and checklists, medication charts and contact lists.

Ways to Get a Free Guide:

1. Download by choosing a version from this page
2. Request a print copy using the yellow button below
3. Call AARP at 877-333-5885 and select option 1

Adult Day Centers offer an interactive, safe, supervised environment for older adults and adults with a dementia-related disease, Parkinson’s Disease, or other organic brain syndromes. They provide personal care, nursing services, social services, therapeutic activities, nutrition, and therapeutic diets and emergency care. Some centers offer additional services such as physical therapy, occupational therapy, speech therapy, medical services, podiatry, etc.

The Locator Tool contains a list of Adult Day Centers in Pennsylvania by county. Each listing includes the centers’ most recent license, inspection summary, and (if applicable) a plan of correction.

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 caregiving, recommendations for home safety, learn more about clinical trials, 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, caring for someone with dementia, 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.

Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment, and following up. However, coordinating care at this level can be a dauntingly complex task. If you are managing the health care needs of a loved one with FTD, the information provided can help guide you.

AFTD provides resources to help you understand FTD, some emerging treatments that can maximize quality of life, and support groups. 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..

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

The Alzheimer’s Association Delaware Valley Chapter serves 18 counties throughout Delaware, New Jersey and Pennsylvania including: Southeastern Pennsylvania-
Berks, Bucks, Chester, Delaware, Lehigh, Montgomery, Northampton and Philadelphia

The Association helps those impacted by Alzheimer's disease and other dementias by providing support groups and educational resources, while advancing crucial research and public policy initiatives. The Alzheimer's Association 24/7 Helpline serves people with memory loss, caregivers, health care professionals and the public, providing reliable information and support to all those who need assistance. Call toll-free anytime day or night at 800.272.3900.

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

We 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.

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.

Dementia Society of America® (DSA) is the nation’s leading volunteer-driven all-Dementias awareness organization. DSA provides an information hotline (1-800-DEMENTIA), many online resources, and an easy-to-use, web-based locator, which can help families and individuals find valuable support near to them.

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.

The Alzheimer's Association Greater Pennsylvania Chapter serves 59 counties in western, central and northeastern Pennsylvania including: Adams; Allegheny; Armstrong; Beaver; Bedford; Blair; Bradford; Butler; Cambria; Cameron; Carbon; Centre; Clarion; Clearfield; Clinton; Columbia; Crawford; Cumberland; Dauphin; Elk; Erie; Fayette; Forest; Franklin; Fulton; Greene; Huntingdon; Indiana; Jefferson; Juniata; Lackawanna; Lancaster; Lawrence; Lebanon; Luzerne; Lycoming; McKean; Mercer; Mifflin; Monroe; Montour; Northumberland; Perry; Pike; Potter; Schuylkill; Snyder; Somerset; Sullivan; Susquehanna; Tioga; Union; Venango; Warren; Washington; Wayne; Westmoreland; Wyoming; and York Counties.

The Association helps those impacted by Alzheimer's disease and other dementias by providing support groups and educational resources, while advancing crucial research and public policy initiatives. The Alzheimer's Association 24/7 Helpline serves people with memory loss, caregivers, health care professionals and the public, providing reliable information and support to all those who need assistance. Call toll-free anytime day or night at 800.272.3900.

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!

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 include: Caregiving publications, support groups, LBD diagnostic symptoms checklist. LBD stories, and additional information.

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.

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.