5 Alzheimer's Content Creators You Need to Follow

5 Alzheimer's Content Creators You Need to Follow
By 
The PicnicHealth Team
December 14, 2022
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Managing an Alzheimer's diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators share their real experiences, tips, and resources with Alzheimer's.

1. Patti LaFleur

Patti’s raw and honest account of caring for her mother Linda has inspired the caregiving community on social media. In addition to care tips, she’s shared her mom’s infectious laughter, their beautiful partnership, and how they’ve overcome obstacles.

Why you should follow:
  • Get tips in navigating your care partner journey
  • Discover activity ideas you can use with your loved one
Top Content:

{{patti-lafleur}}

2. Jacquelyn Revere

Jacquelyn was 29 when she started caring for her mom with Alzheimer’s and her grandmother with dementia. She turned to Instagram and TikTok to share her story within the Alzheimer's community, posting numerous videos to bring awareness.

Why you should follow:
  • Discover self-care tips for caregivers
Top Content:

{{jacquelyn}}

3. Ty Lewis

Ty is a Certified Alzheimer's Disease and Dementia Care Trainer and Certified Dementia Practitioner who also cares for her mom, Gertrude.

Why you should follow:
  • Education around complex behaviors
  • Tips & tricks for navigating this journey
Top Content:

{{ty}}

4. Frances McInerey

 Frances is a former care partner for her father, who passed away from Alzheimer’s Disease.  She uses her platform to educate others about Alzheimer’s and share her journey with her father.  

Why you should follow:
  • Tips for getting involved in legislative advocacy work!
  • Resources to help you with your journey
Top Content:

{{frances}}

5. Mary Daniel

Mary has been a Board-Certified Patient Advocate for over 30 years and a caregiver for her husband Steve, who has been diagnosed with Alzheimer's disease since 2013. She is the founder of Caregivers for Compromise, a Facebook group whose purpose is to give a voice to the loved ones who are in long-term care facilities who suffer from isolation protocols, such as the ones that were implemented at the start of Covid-19. 

Why you should follow:
  • Advocacy tips & tricks
  • Caregiver tips
  • An honest account of caring for a spouse with Alzheimer’s
Top Content:

{{mary}}

About 

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.

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.

2

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.

3

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.

4

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)

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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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

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Pre-Appointment Worksheet

Prepare for your loved one's next appointment

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