Traveling with Dementia – Point of View
by Corrie L. Phillips, PAC Team Member
with Diana Blackwelder
Earlier this week, I settled in with my coffee and my phone to scan my social media sites and news alerts for the day. I often do this to get a pulse on the latest political updates and to check-in on my friends. This morning ritual is a great way for me to connect with the outside world since I tend to work in isolation. As I was reading on this day, I saw a post from Diana Blackwelder, who is living with dementia. Diana was responding to a recent article published by the AARP:
Take a look at the AARP article: How to Travel with Someone Who Has Dementia
Now stop and think for just a moment. What did you notice about his article? How helpful or not helpful was it for you? Why?
Here is Diana’s post that caught my attention:
I understand this article is meant to help, but I am sorry, I feel it instead furthers so many stigmas. For starters, it assumes the person with dementia wanders, might need urgent medical care, has triggers, prefers places already familiar with, cannot do anything to help with decisions or the trip itself. AARP, stop relying on caregivers for your info and start working with people living with dementia. At least include and respect them as being a valuable source of information. Plus, AARP fails to respect that travelling with anyone requires a degree of taking into consideration the travel partner’s preferences regardless of whether or not they have a disability. Oh, that too. They treat dementia as a mental condition rather than a disease that causes various cognitive disabilities which might manifest into other medical issues like incontinence, difficulty sleeping, easily agitated, etc. Anyhow, more education is needed to break so many stigmas. Plus, I don't need you to ask my doctor if I can travel. Geez.
What points did Diana make that caused you to stop and reflect back on the article?
After reading her response, what would you change about the article?
How will you carry this info forward into your role as a Care Partner or as a person living with dementia?
My purpose in bringing this to the attention of our readers is NOT to bash the AARP. Diana and I agree they are an organization who is dedicated to helping seniors live their best life. They are doing good work all over the U.S. and provide support to many. The AARP has the attention of many people and they generally use their resources to share out helpful information.
What struck me, is that this particular article is geared towards a limited audience of care partners who are supporting someone that requires assistance in their daily activities. This idea further perpetuates the notion that all people living with dementia cannot live independently.
There are people all over the world who are living independently with dementia. They do not have or may not need a care partner to manage their lives. Additionally, the majority of people living with dementia, even those severely disabled by the disease, are capable of making decisions and participating in many activities. They take care of themselves completely or only need help in one or more areas of their lives. They develop their own strategies for managing their lives and they are doing a great job!
This article does not mention anything about asking the person living with dementia about their preferences. It seems to disregard their opinions by encouraging the care partner to think of all the possibilities and prepare for such. I understand that the intent of this article was aimed at care partners as a resource to help them plan a trip. I think it can be helpful for some folks that might otherwise simply dismiss outright the possibility of travel with someone that is diagnosed with dementia.
What I would really like to see is a shift in the culture of how we share information. I echo Diana’s words! I would like to see groups like the AARP create resources for care partners and people living with dementia that accurately reflect how people are living their lives and encourage a true partnership in the care partner continuum.
I did a little research and I’m happy to say that there is hope! The AARP has hosted a few videos on their site that spotlight people living with dementia:
Now let’s take this to the next level! What can you do?
We’d like to get your feedback. Share your ideas by commenting on this article or email me and lets work together to share out this information. For every care partner, there is someone living with dementia. Let’s all work together to change this culture and eliminate the stigmas. Let’s show the world that people can and do live well with dementia.
Diana Blackwelder is an active member of the Dementia Action Alliance (DAA) Advisory Board, Dementia Alliance International (DAI), and Alzheimer's Impact Movement (AIM) advocating for dementia issues at local, district, and federal levels. She has advocated during private meetings with directors and staff within D.C.’s government including the mayor’s office and federal government on Capitol Hill. She participates in and consults with the Smithsonian Institute and the US Botanical Garden Access Programs for persons living with dementia (since 2018). Diana speaks publicly during Department of Health and Human Services (DHHS) National Alzheimer’s Project Act (NAPA) hearings and testifies during D.C. council hearings advocating for issues specific to living independently, person centered care, and younger onset dementia. She facilitates a remote access DAI peer support group for persons living with dementia, represents DAI to the LEAD coalition, and consults to the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) to help states, tribes, and territories to implement person-centered practices. She is also participating on a five year To Whom I May Concern dementia awareness and advocacy project in partnership with Michigan’s Assisted Living Community and DAA.