As a patient living with Alzheimer’s, you are likely looking for support and resources. There are numerous organizations dedicated to helping those living with Alzheimer’s and their caregivers find the support they need. This blog post is an overview of some of the most popular organizations devoted to helping patients with Alzheimer’s.
Alzheimer’s Association: The Alzheimer’s Association is a US-based nonprofit organization that provides resources for those living with the disease, their families, and their caregivers. It offers 24/7 helplines in English and Spanish, online support groups, local support groups, educational programs, public policy advocacy, and research funding. It also provides financial assistance to low-income individuals through its grants program. Learn more about the Alzheimer’s Association.
Alzheimer's Foundation of America: The Alzheimer's Foundation of America (AFA) is a national organization that helps provide care and support services to individuals living with all types of dementia, including Alzheimer's disease. They offer education programs, support groups, access to legal advice, financial aid for medical bills, and other expenses related to caregiving for those in need. Learn more about the Alzheimer’s Foundation of America.
American Brain Foundation: The American Brain Foundation (ABF) is an organization dedicated to advancing neuroscience research in order to improve the lives of those affected by neurological diseases like Alzheimer’s. Through its grants program, it has awarded over $18 million dollars in research funding since its founding in 2005. It also hosts an annual conference where researchers can present their findings on neurological disorders such as Alzheimer’s disease. Learn more about the American Brain Foundation.
Bright Focus: Bright Focus is another nonprofit organization that works to provide education about brain health and fund research related to neurological diseases like Alzheimer’s Disease. They offer free materials such as fact sheets on treatment options available for those living with these diseases and webinars discussing various brain health topics. They have also awarded over $19 million dollars in grants since 1989 for research into treatments and cures for neurological disorders like Alzheimer's disease. Learn more about Bright Focus.
For anyone living with or caring for someone with dementia due to an illness like Alzheimer's disease, there are numerous organizations that can help you find the resources you need, including the Alzheimer’s Association, Alzheimer's Foundation of America, American Brain Foundation, and Bright Focus, among others. These organizations provide a range of services and programs, including 24/7 helplines, online and local support groups, educational programs, advocacy efforts, and research funding. Visit their websites for more information and to access the resources they offer. With these organizations' help, people affected by dementia can access more information about available treatments and ways they can access financial assistance if needed to better manage this condition moving forward.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreIf your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.
If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets in-person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating the world of Alzheimer’s.
It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.
It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one with Alzheimer’s. And don’t forget to keep a sense of humor along the way.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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