Resources
Trusted places to find more information and help
There is a lot of information about cognitive impairment, dementia, caregiving, legal planning, benefits, and aging. Finding the right information can sometimes be harder than finding information at all.
This page brings together organizations, websites, and other resources that I’ve found useful or that may help you find reliable information for your situation.
On This Page
Understanding Cognitive Change
Research & Clinical Trials
Finding Help Near You
Listen, Watch & Learn
Finding Legal Help
Financial & Benefits
Caregiving & Everyday Life
About Local Resources
Services, phone numbers, and programs can be different depending on where you live. Before You Need to Know doesn’t maintain a directory of local organizations or contact information.
When possible, the resources here will take you to national organizations with tools that can help you find services in your state or local area.
You can also check your city or county website, local library, hospital, or community organizations for help available near you.
Use What You Need Right Now
There is a lot here, and you don’t need to take it all in at once.
Read what feels useful for where you are right now. Some topics may not apply to you yet—or may never apply to you. Others may become important later.
Bookmark this site and come back when you have a new question, something changes, or you find yourself wondering, “What do I need to know about this?”
Before You Need to Know is meant to be a resource you can return to—not something you have to work your way through from beginning to end.
You don’t need to look through everything here. Start with what you need right now.
Understanding Cognitive Change
If you’re trying to understand changes in memory or thinking, it can help to start with reliable information rather than trying to sort through everything you find online.
National Institute on Aging — Memory Loss & Forgetfulness
Information about memory and aging, including the difference between ordinary forgetfulness and changes that may be worth discussing with a doctor. It also covers other things that can affect memory.
National Institute on Aging — Mild Cognitive Impairment
An introduction to mild cognitive impairment (MCI), including memory or thinking changes that are greater than expected with normal aging and when it may be time to talk with a doctor.
Research, New Treatments & Clinical Trials
Clinical trials aren’t only about medications. Research studies may also look at everyday care, technology, sleep, exercise, communication, caregiver support, and other ways to improve life for people with cognitive impairment and the people helping them.
Some studies are specifically looking for caregivers or care partners to participate.
If you’re considering a clinical trial, talk with your health care provider about the possible benefits, risks, and whether the study may be appropriate for you.
Alzheimers.gov Clinical Trials Finder
Run by the National Institute on Aging it is a searchable resource for dementia, memory problems, caregivers, and healthy volunteers.
The broader U.S. government database and lets people search by condition, location, study status, age, and other criteria
Finding Help Near You
Some of the most useful help may be close to home—and it may not show up in a national resource directory.
Check your city or county website for aging, disability, health and human services, transportation, community programs, and other local assistance. Your public library or community center may also know what’s available nearby.
You can also ask your doctor’s office, hospital social worker, local aging or disability organization, senior center, hospice organization, faith community, or other people in your community.
Sometimes the simplest question is: “Do you know of anything locally that might help?”
Eldercare Locator
A public service of the U.S. Administration for Community Living that helps older adults and families find local services and resources. You can search online or call 1-800-677-1116.
Alzheimer’s Association 24/7 Helpline
A free helpline for people living with dementia, caregivers, families, and others looking for information or support. It can also help connect people with local resources. Call 800-272-3900.
National Council on Aging
NCOA has useful information about aging well, benefits, health, finances, and staying independent. It also has a substantial professional-resource side, which could be useful for someone looking for programs, evidence-based resources, or deeper information.
Listen, Watch & Learn
If you want to listen or watch, the links below will take you to places where you can start.
Podcasts and videos can be a good way to learn about cognitive change, dementia, communication, caregiving, and everyday situations. You can listen while walking, driving, or doing things around the house—or watch when you have time.
Teepa Snow — Positive Approach to Care
Teepa Snow and the Positive Approach to Care team offer practical education about dementia and brain change, including communication and everyday care strategies. Their free resources include videos and a podcast.
Dementia Care Partner Talk Show
A podcast with Teepa Snow and Greg Phelps about dementia, caregiving, and practical situations families and care partners may encounter
Dementia Careblazers — Dr. Natali Edmonds
This is hosted by a board-certified geropsychologist, former family caregiver, and founder of Dementia Careblazers. She shares practical information about dementia, communication, difficult situations, safety, and caregiver stress.
Prefer to listen? The Dementia Careblazers podcast covers many of these topics in short, practical episodes. New episodes are released regularly.
Informed Aging Podcast
It is hosted by Robin Rountree and describes itself as a podcast about health, help, and difficult decisions for older adults. Episodes cover a wider range of aging topics—not only dementia—including caregiving, planning ahead, health, long-term care, technology, and conversations about cognitive changes.
Recent episodes have included how to begin a conversation when you notice possible cognitive changes, planning ahead for long-term care, caregiving through creativity, and planning for decision-making before help is needed.
Prefer a podcast app? You can also find Informed Aging on Apple Podcasts, Amazon Music, and other podcast apps.
Finding Legal Help
You don’t necessarily need to know what kind of attorney you need before you start asking around.
Your state or local bar association may have a lawyer referral service or directory where you can look for attorneys who work with estate planning, wills and trusts, powers of attorney, elder law, or other planning needs.
Personal recommendations can also be useful. Ask friends, neighbors, coworkers, faith-community members, your doctor’s office, or others you trust. Local neighborhood and community forums can be another place to find names of attorneys people nearby have actually used.
When you call, briefly explain what you need help with and ask whether the attorney regularly handles that type of planning.
When someone recommends an attorney, ask why they recommend them and whether they helped with the kind of planning you need.
You don’t have to hire the first attorney you contact. It’s okay to speak with more than one, ask about their experience, and understand their fees before deciding.
Financial & Benefits Information
Benefits, insurance, and financial questions can become complicated quickly. You don’t have to understand every program yourself.
Medicare
The official federal Medicare site explains coverage, costs, enrollment, Original Medicare, Medicare Advantage, prescription drug coverage, and other Medicare basics.
State Health Insurance Assistance Program (SHIP)
SHIP programs provide free, personalized Medicare counseling and are not connected to an insurance company or health plan.
Social Security Administration
The official place to learn about Social Security retirement, disability, survivor, family, and Supplemental Security Income benefits, eligibility, and application information.
A service from the National Council on Aging designed to help older adults explore benefit programs that may help with health care, medications, food, utilities, and other expenses.
Benefits Check Up
Protect Yourself From Scams
Be careful when someone you weren’t expecting to hear from is asking you to act quickly, send money, or provide personal information.
When something doesn’t feel right, stop and check with someone you trust or contact the organization directly using contact information you already know is legitimate.
A Note About “Caregiver” Information
A lot of information about cognitive impairment and dementia is written for caregivers or care partners. Don’t assume that means it isn’t for you if you’re experiencing cognitive changes yourself.
Information about communication, appointments, medications, driving, staying independent, making the home easier to manage, planning ahead, and knowing when help might be useful can be valuable whether you’re helping someone else or planning for yourself.
Use the information that applies to you, no matter who it was originally written for.
Caregiving & Everyday Life
Learn From Other People’s Experience
People who have been through similar situations can be one of the best sources of practical information.
Support groups, caregiver programs, community organizations, and online communities can be useful places to hear how other people have handled everyday problems.
You don’t have to follow every piece of advice you hear. Take what is useful for your situation and leave the rest.
Getting Help Is Part of Planning
You don’t have to do everything yourself.
Whether you’re living with cognitive changes or helping someone else, there may come a time when another person, service, or organization could make everyday life easier.
Help might mean transportation, meals, someone checking in, help at home, respite care, an adult day program, or simply having someone else you can call when you’re not sure what to do.
Asking what help is available before you urgently need it can make those decisions easier later.
Not all of these resources are just for older adults. If you’re living with cognitive changes at a younger age—or helping someone who is—look for disability and caregiver resources too. Many of the same kinds of support may be available through a different program or organization.
Family Caregiver Alliance
Practical information for people caring for an adult with a physical or cognitive condition. Their resources include articles, videos, webinars, and help finding caregiver services in your state. Their national resource listings aren't limited to someone caring for an elderly person.
Aging and Disability Services
The Administration for Community Living connects older adults, people with disabilities, caregivers, and families with community services. Its help page has separate routes for aging services and disability services. The disability side includes help locating things such as transportation, housing, legal assistance, and other community supports.
There's also a very useful state-by-state page specifically for older adults, people with disabilities, caregivers, and family members trying to find local services.