The other day, while going through my emails, I found a discussion on LinkedIn under this heading:
“Should people with dementia have the same rights as the rest of us?”
“This can’t be serious!” was my first thought. I was appalled by the question and incredulous as I read where the conversation went.
It started out with Susan Macauley, (those of you who read SCA blogs know Susan is one of my online heroes in dementia advocacy) posing the question as an introduction to The Dementia Bill of Rights, the ensuing posts that often are characteristic of online forums degenerated into semantics and arguments about who is right and who is wrong. Whoa. What are we talking about here, anyway?
Newsflash, people! This is a very serious and important question that again shines a light on the unfortunate way that society views people who are living with dementia. The stigma, the assumptions, the lack of respect, and most of all, the inability of that person to be seen by their loved ones for who they are....and they are, indeed, someone. A person with a name, face, history, and yes, a disease. We get so tangled up in our own fear about dementia that we sometimes forget about the person sitting right in front of us, wanting and needing not much more than to be loved, touched, and valued.
This conversation made me want to cry. Clashing opinions, challenging each other, and sorry to say, forgetting what the whole point of the Dementia Bill of Rights is about – that someone with dementia has the same rights as anyone else.
Read this list of twelve rights. Which ones do you think should be adjusted, removed, or ignored when a person’s cognition becomes compromised? How would it feel if any of these rights were taken away from you?
The Best Friends™ Dementia Bill of Rights (by David Troxel and Virginia Bell)
Every person diagnosed with Alzheimer’s disease or other dementia deserves:
- To be informed of one’s diagnosis.
- To have appropriate, ongoing medical care.
- To be treated as an adult, listened to, and afforded respect for one’s feelings and point of view.
- To be with individuals who know one’s life story, including cultural and spiritual traditions.
- To experience meaningful engagement throughout the day.
- To live in a safe and stimulating environment.
- To be outdoors on a regular basis.
- To be free from psychotropic medications whenever possible.
- To have welcomed physical contact, including hugging, caressing, and handholding.
- To be an advocate for oneself and others.
- To be part of a local, global, or online community.
- To have care partners well trained in dementia care.
If there is someone in your life who is living with dementia, ask yourself if their rights are being protected and honored. If they are not, there’s work to do.
If you have any questions or would like to be in touch with a Senior Care Authority Advisor in your area call (888) 854-3910 for a no-cost phone consultation. We have many resources to share with you. You can also find a local advisor on our website at www.seniorcareauthority.com.
Marcy Baskin is an Elder Care Manager, and Managing Director of Senior Care Authority. She is also the author of Assisted Living: Questions I Wish I Had Asked.