4 Documents You’ll Need When Caring for a Loved One with Alzheimer’s

By 
The PicnicHealth Team
December 14, 2022

A diagnosis of Alzheimer’s disease or dementia for your loved one can be overwhelming. There’s a lot to think about, from medical care to emotional support, from daily logistics to planning for the future. Staying organized with paperwork may seem minor, but for caregivers, it can make everything you’re dealing with a lot more manageable. 

It’s never too early to gather important papers for the caregiving journey. Start with the following four documents, tuck them in a folder or clear sleeve, and keep them in a safe yet easy-to-access place. While planning for the future can bring up difficult emotions, don’t shy away from having these important discussions with your loved one. You’ll be glad you did.

Medical Power of Attorney 

A medical power of attorney (POA) names someone who will serve as a proxy to make medical decisions on behalf of a patient. For people with Alzheimer’s or dementia, it’s key to make sure that the POA is durable—meaning it will stay in effect after the person becomes incapacitated. The POA may also be springing. This means it won’t spring into effect until the person becomes incapacitated.

Ideally, a POA will be created in the earliest stages of Alzheimer’s or dementia, while the person is still able to comprehend and sign the document with informed consent. If your loved one is unable to understand the document and process, you can appeal to a judge at your local court to review the case and grant POA to you or another appropriate person.

In either case, it’s a good idea to work with an attorney to draft a POA. You can find a lawyer through the National Academy of Elder Law Attorneys, or visit LawHelp.org to find free or reduced-cost legal aid programs in your community.

Not only does POA give you the power to make medical decisions for your loved one, but it’s also necessary for them to participate in medical research, as well as for you to obtain documents on their behalf. For example, a POA is needed to sign up on PicnicHealth so your loved one can help contribute to breakthrough research, while keeping their medical records and documents in one easy-to-access place.

Living Will / Advance Directive

A living will records a person’s wishes for how and when they’ll receive medical care if they’re terminally ill or near end-of-life. It may include how long to prolong the life of your loved one if they’re incapacitated, as well as their religious preferences.

Similarly, an advance directive is a set of instructions that outlines your loved one’s healthcare wishes—but it isn’t limited to end-of-life. An advance directive goes into effect during medical events such as dementia, stroke, or coma. For example, this document may include a do-not-resuscitate (DNR) order that can be signed by a doctor and put in a person’s medical chart.  

List of Recent Medical History

While you may need a lawyer to help draft the above documents, a list of recent medical history is something that you can gather on your own. This kind of list is important to have in case of emergencies, as healthcare providers will need to know the context of your loved one’s care. Be sure to include any surgeries or procedures, as well as a list of all medications, treatment regimens, labs, imaging, and the like. This may seem daunting to gather—but if you’re signed up on PicnicHealth, you have access to these up-to-date details and can pull them easily from your loved one’s Timeline. 

List of Recent Medical Team 

This kind of list is also handy for emergencies—and once again, you can find all the names of your loved one’s healthcare providers right on the PicnicHealth dashboard. Simply go to the Care Team tab for a list of their specialists, primary care physician, provider locations, and more. You can even share your loved one’s PicnicHealth medical Timeline with their care team if you so desire. 

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The PicnicHealth Team

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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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1

Build a support network.

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.

2

Stay organized.

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.

3

Plan for the future.

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.

4

Explore treatments and clinical trials.

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.

5

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 with Alzheimer’s. And don’t forget to keep a sense of humor along the way.

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)

Tip: Download or print the poster at the end of this article to review before your next appointment!
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.

Learn more about contributing to IgAN research with PicnicHealth. 

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Keep an Eye on These Test Results

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