Dementia Care: It Takes A Village: reading, resources, services, podcasts & media, updated 4.1.26
We can't do this alone.
Personal Stories
Pharma breakthroughs
Understanding Memory
➡️ NEW LINKS: April 2026 ⬅️
Let’s talk about another uncomfortable subject, Money
AARP 12.11.24
Let’s take a look at how money changes everything in The Pros and Cons of Receiving Pay as a Family Caregiver.
AARP 1.24.23
10 Tips for Splitting Caregiving Costs Among Siblings. Some practical ways to approach sharing parents’ long-term care expenses.
AARP 6.28.24
Scams: How to Keep a Loved One With Cognitive Decline Safe. Key steps to protect vulnerable family members’ finances in an age of rampant fraud.
Ted Talks: What’s the connection between sleep and Alzheimer’s disease? | Five minute video where Sleep scientist Matt Walker explains the relationship between sleep and Alzheimer’s—exploring how to use sleep to decrease our chances of developing this condition. (full video below)
Alzheimer’s Explained - A short (3:09) , easy to understand, YouTube video from 1440. (full video below)
EDUCATION, RESOURCES & SERVICES
AARP Checklist
A very helpful 2020 article : Practical steps you need to take in the early days after a loved one’s death. Basically, your To Do list when someone dies
AlzConnected
Alzheimer’s Association - National. This is a free online community designed for people living with dementia and those who care for them.
» Great article with graphics here: Inside the Brain, a tour of how the mind works. Part I - Brain Basics. Part II - Alzheimer’s Effect
Care.com
Nationwide job board for family care needs. I’ve found several wonderful home health aides here.
Caring Kind - NYC
Alzheimer’s Caregiving; emotional support and education. Formerly the NY branch of the Alzheimer’s Association, they broke off when their focus moved from research (Alz Assoc) to support. I went to a support group for caregivers here, twice a month for five years, seminars on finance and legal issues and more. You need support.
CaringInfo.org - A program of the National Hospice & Palliative Care Organization
Portable Medical Orders (POLSTs) vs Advance Directives. What’s the difference and which one do you want now.
Making Your Healthcare Wishes Known
First, know what each option is and what it covers: Advance Directives, Living Wills, PoAs, DNRs and POLSTs
Comparitech
Protect against posthumous identity theft. What happens when an identity is stolen after a person has passed away?
Dementia Home Care Grants
Home care grants to those providing care to their loved ones living with Alzheimer’s disease or other dementias awarded across the United States and Canada.
Dementia Risk Factors
An infographic of 12 Modifiable Risk Factors for Dementia, available and downloadable in multiple languages.
Dorot
“We deliver programs and services through intergenerational connections with volunteers of all ages.” Read more here: : Connecting teens and elders.
Five Wishes - a simplified advanced care planning tool (Resource)
Get Palliative Care - The Center to Advance Palliative Care provider directory to help you or a loved one locate palliative care in your area whether at home, hospital, nursing home, or at a clinic. They also have a great list of resources.
HomePay
Managing household payroll and taxes. This has been invaluable at managing home care staff payroll and taxes. The fee they charge is minimal and it was worth it to me to not have to educate myself on tax structure and changing laws.
Lyft Concierge allows healthcare providers & other businesses to request, schedule and pay for rides on behalf of patients. Lyft also provides free or discounted rides through 211 (the numbers for essential community health and human services & resources) (Service/Resource)
National Counsel on Aging
Research and Resources. Information on everything from falls prevention to adult protective services to money management
National Institute on Aging
Services for Older Adults Living at Home
Negative Space
“(Our) mission …is to change the way caregivers are seen and supported, to help caregivers and their supporters recognize that without them the whole picture would be different, … that they are part of the story.”
Uber Caregiver allows caregivers to arrange rides for another person. The driver, passenger and carer can communicate in a three-way chat. (Service/Resource)
US Dept of Health & Human Services: Aging
Knowing the Options for Health Care, Long Term Care, Elder Justice
MEDIA
New York Times: February 2026 (gifted article)
5 Conversations to Have With Your Aging Parents
Many families put these talks off. But having them now can lead to better care later. (Media)
New York Times: April 2025 (gifted article)
Shingles Vaccine Can Decrease Risk of Dementia, Study Finds
A growing body of research suggests that preventing the viral infection can help stave off cognitive decline. (Media / Pharma)
NPR Life Kit: October 2024
Read here: How to prepare for the death of a parent: A checklist
Listen here (23 minutes)
Medium (paywall) : May 2019
Exploring the Link between Menopause and Alzheimer’s
Dr. Lisa Mosconi’s grandmother had two sisters and a brother. All three sisters died of Alzheimer’s. Their brother was spared. Why?
New York Times Opinionator : April 2015
The Right Paperwork for End of Life Wishes, Jessica Nutik Zitter
New York Times: November 2025 (gifted article)
The Most Important Conversation to Have Before You Die
Talking about your advance care directive with your loved ones will make life — and death — easier later on. (Media)
The New Yorker: October 2018
The Comforting Fictions of Dementia
Facilities are using nostalgic environments to sooth misery, panic and rage in residents
Personal stories
Learn From My Mistakes: Substack Publication
Is it too early to look at assisted living? (Probably Not!)
Lauren Klinger writes “A newsletter with practical advice for a period of life you might not realize you’re in—your parents are getting old, and you need help.”
Real Simple: 10.30.24
Ways to Care for the Caregivers in Your Life
Advice for caregivers and those who love them, written by a young woman caring for her husband with stage four brain cancer.
New York Times (gifted article): August 20224
Doctors Saved Her Life. She Didn’t Want Them To. When her “do not resuscitate” order was ignored, Marie Cooper found herself in a painful situation she had hoped to avoid.
NPR - Fresh Air: March 8, 2022
After an Alzheimer's diagnosis, her husband asked for help to die with dignity
New York Times (gifted article) : May 2015
The Last Day of Her Life - Resolved to Kill Herself Before Alzheimer’s Took Away Choice. The Question Was, When?
The Moth : December 2019
Storyteller Christina Igaraividez connects to her grandmother through the violin. Her story from the Moth Mainstage: Music, My Abuela and Me
Guardian : July 2024
Alzheimer’s undid my dazzling, creative wife in her 40s. By the time my wife got a diagnosis, her long and harrowing deterioration had already begun. By the end, I was in awe of her. by Michael Aylwin
Pharma breakthroughs
August 2024: Alzheimer’s drug may save lives through ‘suspended animation’ - a 4 minute read from The Harvard Gazette. And if 4 minutes is too much, if that’s TLDR, in a nutshell: Donepezil, used currently to treat Alzheimer’s may be able to be repurposed to help buy patients critical time to survive devastating injuries and diseases.
Understanding Memory
August 2024: Your Memories Are Like Paintings by Kevin Berger for Nautilus. “Memories are not a true or false picture of the past; they are a Monet lily pond.” That’s a quote from Why We Remember by Charan Ranganath. Memory is unreliable, it changes each time you access it, albeit almost unnoticeably. So those incidents you recall a often, are the ones that are the most changed. I’m obsessed with Memory - how it works and how it doesn’t. I have a memory disorder - and that’s for another time, but I’ve come to accept the generally held belief that memory is unreliable, it changes each time you access it, albeit almost unnoticeably. But that means that those incidents you recall a lot, good or bad, are the ones that are the most changed. I just ordered Ranganath’s book.1
“Evolution is to blame for our shaky memories and selves. If we evolved to remember everything, we couldn’t function due to the overload of sensory information…we’d become an easy lunch for a predator. So much for human survival.
“Given the chameleon nature of our memories, changing their colors to suit different environments, do we ever see anything for what it is, remember it for what it was?”
PODCASTS
Caregiving Secrets
A podcast for family caregivers determined to learn and apply the secrets of living full, meaningful, joyful and healthy lives while providing exceptional caregiver services to their loved ones.
Road to Resilience : Care for the Caregiver
Author Fred Plotkin brings his background in opera, food, and all things Italian to providing emotional, intellectual, and physical support for four close family members over several decades. In this podcast, he shares the joys and challenges of respectful caregiving
Twentyfour Seven - A podcast about Caregiving
What happens when you become your parent's parent? That's what longtime NPR journalist Kitty Eisele had to figure out when she became a full-time caregiver for her beloved dad.
VIDEO
Alzheimer’s Explained - A short (3:09) , easy to understand, YouTube video from 1440. I finally understand why my parent’s generation didn’t have to deal with parent’s with Alzheimers/dementia. It didn’t even have a name until 1995, when the 1906 findings of Dr. Alzheimer (yes, Virginia, there is a Doctor Alzheimer) were “found,” and finally published and translated. My grandparents were already dead by 1995.
What is Dementia? - Slightly longer (21:16) YouTube video from Teepa Snow. If you’re not familiar with Teepa, and someone in your world is dealing with dementia, get to know her. Teepa knows, and she explains in a way you can understand and implement. Her stated life’s mission is “to shed a positive light on dementia.”
Palliative Care Queensland: The Cassette by Catherine Prowse. PCQ is a hospice that feels how we treat our dying is a measure of our humanity. They commisioned this video “on living the end of your life on your own terms.”
HBO/YouTube: Last Week with John Oliver on Hospice on how hospice is intended to function & the hospice scams that occur too often. 8.22.24
Ted Talks: - 5 Minutes: What’s the connection between sleep and Alzheimer’s disease? | Sleeping with Science, a TED series. Sleep scientist Matt Walker explains the relationship between sleep and Alzheimer’s—and how researchers are exploring how to use sleep to decrease our chances of developing this condition.
BONUS LINK: Charan Ranganath’s band, Pavlov’s Dogz doing their version of Wanna Be Your Dog. All of them are neuroscientists.