Rights of People Living with Dementia
Welcome to Memory Care Support’s July 2015 newsletter!
A recent landmark decision by U.S. Supreme Court helped expand the rights of the LGBT people by ruling in favor of same sex marriage. In the majority opinion, Justice Kennedy wrote, that it would “disparage their choices and diminish their personhood to deny them this right,”
This declaration, “disparage their choices and diminish their personhood” is also applicable to the current situation of many people today living with dementia. For many reasons, people affected by dementia, are a vulnerable group, whose rights are often unrecognized.
Some of the reasons that people living with dementia are vulnerable include:
* They often are of an older age and older people tend not to be valued in our culture. Youth is celebrated and when you can no longer show the beauty of young age your worth is diminished.
* They may not immediately demonstrate the traits of what are considered “powerful” or “successful” people such as health, wealth, valuable possessions, and sharp intellect.
* They are not able to advocate for themselves. Diminished communication abilities and confusion make it difficult to articulate their needs.
Like other vulnerable populations, it is significant not to dehumanize and make broad sweeping assumptions regarding their characteristics and abilities. So often I see family members and medical professionals discount the needs and preferences of those affected by dementia.
My list of fundamental rights for those affected by dementia would include:
* The right to an early and correct diagnosis to allow maximum participation in decision making for future care.
* The right to participate in their care decisions. The saying “Nothing About Me Without Me”, is a good mantra to keep at the forefront as plans are discussed for medical or social care.
* The right to personalized care to fit the preferences and abilities of each individual – it is “person-centered”
* The right to supportive care to maximize choice and dignity and independence.
* The right to be loved and experience loving relationships.
* The right to not experience any form of abuse, such as financial, physical, sexual or emotional.
* The right to a peaceful, comfortable and dignified end- of- life experience.
Some countries are much further ahead than the United States in recognizing the rights of those living with dementia. The Dementia Action Alliance of England has a detailed National Dementia Declaration which is quite wonderful to read: http://www.dementiaaction.org.uk/nationaldementiadeclaration
I hope you’re all having a wonderful summer!
I look forward to hearing from you,
Anne Ellett, N.P., M.S.N.
AANC Certified Gerontological Nurse
Founder, Executive Director - Memory Care Support
Ph. 949 933-6201