Alzheimer's Foundations You Need to Know

Alzheimer's Foundations You Need to Know
The PicnicHealth Team
October 12, 2022
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

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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Create a List

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.

Ensure You Have the Appropriate Legal Status

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.

Gather and Organize the Medical Records in One Place

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.

Review the Medical Records to be an Informed Advocate

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

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally 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 caregiving.


Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.


Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.


Make time for self-care.

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. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

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However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

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