What About Us? Great Resources for People Living with Dementia
by Kathleen Landel, MA,
Nancy and John were the first to arrive at my dementia education workshop. They warmly introduced themselves, and shared that John had been recently diagnosed with dementia. John actively participated in the learning activities and asked great questions, searching for knowledge and understanding.
It’s rare for people living with dementia (PLwD) to attend one of my workshops. I got to thinking how dementia is one of the few medical conditions where education and support is primarily focused on the care partner. John was eager to continue his learning, and find support for himself, so I recommended some resources that I’d like to share.
My best source of information is to follow several self-advocates who are book authors and bloggers, and live with dementia.
In Brian LeBlanc’s recent blog, The Attack of “The Nothingness,” he shares how he depends on his “girlfriends”, Siri and Alexa, and uses his favorite music playlist to move himself through what he calls Brain Fog. Brian’s advice is to, “. . . make a playlist of your favorite songs, not just songs of today but from years ago. When you are having a tough time, a sad time, a confusing time or just want to reminisce, play YOUR music, YOUR playlist, the songs of your life.”
Listening to favorite music activates all parts of our brain, and taps into happy emotions. To create your own favorites playlist, check out the downloadable resource guide from the nonprofit organization, Music and Memory.
Dallas Dixon is the irreverent Dementia Dude. He posts insightful and witty commentary on his LinkedIn profile about dementia. Dallas said that at first, he looked for diagnostic answers and found Teepa Snow. She was, “the only normal person who knew dementia and truly liked us. Heavenly!”
PLwD can join the free live webinars Let’s Talk – Time with Teepa and You. The open forum offers a safe place to share successes, celebrations, frustrations, challenges, and to problem solve with each other. Teepa may ask for help or seek information, as well as contribute what she can.
Dallas found other “lifesaving” places where he meets other dementia dudes and dudettes in-person, or virtually. Check with your local senior center or Alzheimer’s Association for support groups. Dementia Mentors works internationally to help those living with dementia stay social. Join a live virtual memory café, or be matched up with a peer mentor for one-on-one phone or virtual sessions.
Australian Kate Swaffer is a powerhouse as the Chair, CEO, and co-founder of Dementia Alliance International (DAI), a global advocacy and support group of, by, and for people with dementia. The organization’s philosophy is “Nothing about us, without us.” Besides free on-line support groups, DAI is an advocacy group that believes that persons with dementia are capable of representing themselves. DAI has many resources under the Services, Resources and Events tabs on their website.
For those of us who support and advocate for PLwD, I recommend checking out these resources, and following folks like Brian, Dallas, and Kate. They have a lot to teach us.
Kathleen earned a Master of Arts in Whole Systems Design from Antioch University, Seattle with a focus on community-level systems change. As a PAC Mentor she draws on her experience as a strategy consultant and facilitator to health and human services nonprofits. Kathleen’s personal journey as a care partner for parents living with dementia was transformed when she met Teepa. Since becoming a PAC certified trainer, coach, and consultant, Kathleen has partnered with senior centers and the libraries in her rural Northwest community to offer PAC workshops for family care partners and professionals. She hopes to spark a dementia-friendly program on her island community, and is helping to launch a PAC certified community network in Washington state.