The Internet has countless resources for caregivers, with more added every day. These resources coexist along specific tiers of professionalization, geography, focus, and affordability, but they aren’t always simple to navigate and as clearly identified as we might like. We reviewed some of what’s out there and created a guide to give you some tips for choosing the best resources for caregivers when you need them.
Resource Guidelines You Need to Know:
There are a ton of freely available resources. No subscription services, no premium apps, no intricate logins. But, if you can invest further in your care journey, we recommend the book The 36 Hour Day, a family guide to caring for people who have Alzheimer's disease, other dementias and memory loss. You can also use Find A Therapist to specifically find a physician who specializes in seniors and grief and loss.
Resources must be organized and easy to navigate. We’d all like to find the perfect article for every situation, but most of us can’t make that kind of time. We favor comprehensive yet straightforward caregiver resources that are devoted only to dementia care.
Resources must talk about challenges frankly. No jargon, no glossing over the complex parts.
Learning about Dementia
Beginner: What is dementia?
Intermediate: Alzheimer’s and Dementia
International: alzheimers.org.uk, and The Global Dementia Observatory (GDO) Knowledge Exchange Platform
A concise, targeted website will have information broken down into short,
well-organized sections, with convenient links and photos but not an abundance
of distractions, as demonstrated by the two links above to Alz.org. What you
don’t want to do is get caught up in professional sites or newsletters about
clinical research, international policies, or prevention. Also, beware of sites
ending in “.com” unless you are referred there by someone you trust; outdated
information and scams are unfortunately commonplace. In the case of
CaregiverWellnessRetreat.com, we became a non-profit five years after offering
free services. Our website reflects that and our mission to help caregivers at no
cost.
Dementia Care Skills
Once you understand the basics, you’ll have a lot of smaller topics that come up. Once again, we included a specific caregiving page from the Alzheimer’s Association for its simple, effective design.
Other sites about general caregiving tend to lack the specifics you need, and smaller sites may not go as in-depth. The sites we list here, Dementia Careblazers and Teepa Snow, cover many topics and go into depth while also having easy to use search functions to save you time.
If you need sharable information away from the computer, the National Institution on Aging offers up-to-date booklets on dementia and dementia care. You can print these out, read from a phone, or order (free) by mail through their website.
Community Services
In the U.S., click this: to find your local Area Agency on Aging
In Canada, click this: Dementia Programs and Services by Area
The more we can count on national/international resources for general information, the more regional services can target their resources for local audiences. In the U.S., we rely on Area Agencies on Aging (AAAs), over 600. Note that AAAs do not always provide the services; they may just direct information.
While the Alzheimer’s Association and AARP’s resource finders offer a vast repository of events and resources, both can be overwhelming. Fortunately, information is also available via the Alzheimer’s Association’s dementia care hotline 800.272.3900 which is staffed 24/7 by social workers and other professionals, and during business hours, you will usually reach someone local to you.
Emotional Support
We advocate for caregiver solidarity and commiseration, and the CRF is the best database for connecting caregivers to one another, whether in-person or online. Offering support groups, social events, and skills development, these resources bring dementia caregivers together like no other. Many others (including Alzheimer’s Association) have tried to develop online forums – some even with fees – yet we never see one attain enough participation to offer meaningful support.
On the other end of the spectrum are traditional social media, where if your Facebook friends aren’t going through something similar, you may find yourself screaming into the void. Niche support systems exist on these sites, but they’re not the kind of thing you can find easily.
Canadian Resources
Alzheimer’s Society is very active in Canada and their website is easy to use and contains much of the same information as The Alzheimer’s Association’s Canada website. You’ll have to reach out to your nearest chapter for information about local support.
We’ve just scratched the surface, but this should be enough information to get you started. This list is current as of June 2021, but sites change often. Let me know if you see one of these sites doing better or worse. You can also email me at theoriesofcare@gmail.com with other topics you’d like help navigating, and I’ll cover them in future blogs.
About the Author:
G.J. Hodson is a social researcher and former dementia caregiver. After five years caring solo for a beloved grandfather, G.J. enrolled in graduate school to research isolation and inequality for caregivers, graduating into a pandemic with a Master's in Sociology and a certificate in Multicultural Women's and Gender Studies.
G.J. has been a volunteer for the Caregivers of Dementia Wellness Retreats and other organizations since 2017, facilitates two DFW support groups for dementia caregivers, and recently began freelancing as a care coach.
For more info about G.J.'s work and service, please check out the blog "Theories of Care".