Monday, May 7

The 10 Rights of People with Dementia


The Global Dementia Charter outlines the self-evident rights of people living with dementia. Watch this video on these 10 most basic rights. Then download the charter entitled, 'I Can Live Well with Dementia'.

As the largest international provider of specialist dementia care, and the only international federation of Alzheimer associations and global voice on dementia, Bupa and the Alzheimer's Disease International intend to revolutionize care and to campaign to ensure people living with dementia live well, and that their family and friends are properly supported.

That is why we have joined forces to outline, for the first time, what we believe are the rights of people living with dementia, wherever they are in the world. Our joint Global Dementia Charter has been written for, and endorsed by, people living with the condition.

We are committed to shaping global dementia care and having people living with dementia lead happier lives, for as long as they can. That is our vision. This is our purpose.


The charter

  • Bupa

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  1. It's also important for families of a loved one with dementia to know that oftentimes people with dementia are wrongfully taken into guardianship or conservatorship under the guise of "protection." The proceedings (meant to protect) strip the alleged incompetent person of his/her fundamental liberties, including the right to complain. Families get shunted aside and are often completely in the dark in regard to care and medical issues related to their loved ones. It's a nightmare that never ends and it's not only happening in our country, but it's growing.

    Join the national movement for reform of unlawful and abusive guardianships and conservatorships. Join NASGA: www.StopGuardianAbuse.org.

  2. This is all idealistic and ‘pie-in-the sky’ but realistically it doesn’t provide much to patients or their families.

    1.Access to a diagnosis? OK sure, but I know of no Alzheimer’s organization that has developed any ethical standards that must be included in an accurate diagnosis. Some people get a million dollar work up with CT, MRI and the latest PET scans. Others get a prescription for Aricept after they could not remember the date during a cursory exam. How about publishing the minimum tests and exams that MUST BE included in a dementia exam?

    2. Access to information? How about MANDATORY information. At one time any AIDS diagnosis was REQUIRED to be followed up with counseling. But sadly a dementia patient can leave their doctor’s office without receiving any follow up information. How about requiring classes for the patient AND their family? How about the mandatory distribution of the book The 36 Hour Day to every new diagnosis?

    3. Living independently, Having input into a care plan and Receiving high quality care have nothing to do with dementia specifically. These are things the EVERY person with ANY DISEASE has or should have the right to.

    4. Access to medicine that helps? Certainly! However does this include STOPPING medicines that are no longer effective? Does this mandate third party coverage for EVERY new medication that comes along? Then what about powerful psych medications that calm a person, stop hallucinations, and make them less violent and manageable so that they can receive compassionate care? Anti-psychotic meds are not all bad.

    5. Family to have good memories of me? Sorry, but it will be a very long time before I have any memories of my wife as a capable, competent, educated person. Unfortunately the memories of her unable to read, speak, dress & toilet herself or even walk, will last a very long time. The memories of performing her care having almost killed me will never go away. I WISH I had good memories of my wife but Alzheimer’s took them from me and replaced them with a monster.

    6. End of life decisions? Does this include a ‘suicide’? Very nicely portrayed in Still Allice (book & movie) she WANTED to kill herself before she became a burden to her family. However this end of life plan was denied her. Sometimes end of life care means dropping out of the race before you have gone the complete distance.

    Sadly this is list is too superficial to make any real impact on the lives of dementia patients or their families.

    1. Thank you, your reply articulated my thoughts beautifully!!


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