Hello my Mothership crew! I’m not gonna lie. I had a rough start today. But I really wanted to get this list of resources to you today as a starting point. These are sites and sources I’ve found helpful, not only in dealing with Alzheimer’s, but also with aging parents, aging self, managing loss, and maintaining mental and physical health along the way.
This list will be updated as I remember things and as I discover new things through the community. My goal is to keep tweaking, updating organizing and wrangling it to make it informative and easily accessible. Paid subscribers will always have access to the whole list and I will repost the link any time it is updated. As a reminder, Wednesdays posts are always free. Paid subscriber posts, when they happen, come at you on Mondays. And now, here you go!
ORGANIZATIONS FOR EDUCATION AND ADVOCACY
Alzheimer’s Association: Start here for a trove of information and resources, including a 24/7 helpline that will take on any questions, large or small. Many of the resources will funnel into this, so it is a great place to start.
UsAgainstAlzheimer's: While the Alz Association offers a broader range of resources, UsAgainstalzheimer’s is more focused on advocacy, education and policy change. Their work is centered on prevention, early detection and diagnosis, and access to treatment. This is a great source for hearing the latest, leading edge research and perspectives, as through their BrainStorm podcast (see PODCASTS below).
The Lancet: You’ll remember from “A Fighting Chance” this medical journal that reported the first glimmer of hope in the fight against Alzheimer’s. The 2017 report was updated in 2020 and again just recently, in August 2024. You just need to create a free account to access reports with extensive data that will satisfy the science nerd in you.
Modifiable Lifestyle Factors Graphic: Also from the Lancet, this graphic (updated in 2024 to include vision loss and high LDL cholesterol) shows the 14 modifiable risk factors that, when addressed, together can prevent or delay nearly half of all dementia cases.
PLANNING AND TOOLKITS
Compassion and Choices: Briefly mentioned in Help (not) Wanted, this is a helpful resource that walks you through end of life planning and choices. It is an excellent place to start thinking about, defining and clarifying your wishes, for end of life decisions. Their 40 page toolkit is downloadable or available in hard copy for free and includes instruction for how to increase the odds of having your wishes honored. The organization also advocates for Medical Aid in Dying (MAiD) and has the latest info on that.
CaringInfo is a program of the national hospice and palliative care organization. It is a good place to start to gain a better understanding of what Hospice is, what services it provides, and factors that go into picking a provider near you that matches your needs. Hospice ROCKS, and I wish we had understood it earlier in our journey. That said, they are all different (this site helps explain how), and the earlier you understand how they can help you, the better.
National Academy of elder law attorneys: Naela.org is a professional association of attorneys dedicated to improving the quality of legal services provided to older adults and people with disabilities. I have never used them but it’s a good org to know about.
Aging Life Care Association: is a place where you can find geriatric case managers who can act as your health care representatives. We had enough family in the mix that we did not need this, but it is a service available if you need an advocate.
Eldercare Locator is a public service of the Administration for Community Living connecting you to services for older adults and their families. Put in your zipcode and it provides you an overview of local resources. It is not super granular but it can be a place to start.
CAREGIVER ADVICE AND SUPPORT
Dementia Care Blazers: This site, billed as “Dementia care for people who care” was founded by Natali Edmonds, a board-certified Geropsychologist. You can sign up to get the free weekly newsletter: Dementia Dose but the real gold here is the youtube channel with more than 600 videos on every topic caregivers struggle with. All are clearly labeled so you can browse topics you need. They also offer programming to support families and professional caregivers.
A few videos that jump out are: this one about feeling guilty about putting someone in a nursing home. The comments alone are their own salve; this one about the three things never to do when caring for someone with dementia; and this chat with dementia expert Teepa Snow as she demonstrates exactly how to respond to someone with dementia who is upset. Snow’s simple approach sequence of starting with visual, then verbal, then touch is one of many quick tips.
Along those lines Teepa Snow is the grand master of dementia care and offers her wisdom on every platform, where she has millions of followers: Folllow her on her website, or on her youtube channel on facebook or on Tiktok @teepasnow
Bright Focus Foundation’s “Zoom In On Dementia and Alzheimer’s” are free live conversations with renowned experts and scientists. They have an archive of informative sessions. Shout out to substacker Tanya Reynolds for pointing me to these.
NUTRITION AND LIFESTYLE
Brain Health Kitchen is a newsletter and you’ll also find tons of recipes and info at brainhealthkitchen.com. “We are preventing Alzheimer's and other dementias with brain healthy foods and lifestyle tips based on the latest science.” Both sites offer plenty of great free info and more deep dives and conversation for paid subscribers. There is also the Brain Health Kitchen cookbook for hard copy advice and recipes.
Dr Uma Naidoo is all about using food for mood and mental health. She has books and boatloads of advice on brain healthy eating.
Ageless Innovation: Maker of robotic pets and board games adapted to engage seniors and encourage multi generational play. We talked about them in On Purpose and The Power of Play. If you’re looking for an engaging Christmas or birthday gift, or just for some motivation on how to bring fun into someone’s life, check them out.
Cycling without Age: Everyone has the right to feel wind in their hair. That’s the tagline for this global, volunteer-driven organization that provides Trishaw rides to anyone with mobility challenge. CWA provides incredible joy and adventure to elderly people who can no longer experience movement and momentum. (We talked about it here in Great Intentions and Bad Timing). Find out how to get a ride for someone you love, or how to become a pilot and give rides.
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