Don’t write us off: People with dementia press for more rights – and respect
dementia patients want to maintain control over their lives and be treated with respect

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006. “Everybody thinks that we are just a medical problem,” Mittler told his audience. “People…

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8 Comments

  1. My MIL lives in her own little bizarre world. There is no way she can make any decisions on her own. She has to be prompted to do the simplest of things, such as getting out of bed or putting pills in her mouth and swallowing them, instead of giving them to her teddy bear!

    Reply
  2. And as far as participating in life…maybe at earliest stages…but seriously if you have ever been a caregiver …for dementia…you would know that they tend to isolate…being social is not on their list…being out is confusing…frustrating and consternation…because they do not live in our reality…and because of associated depression…enjoyment of activities is just not there…their behavior dictates their social capabilities…if a person with dementia acts terrible when taken out…do you think the family is going to be eager to do that?…Of course not!…but they often do not remember their behavior or why they are kept home more…there comes a point…If they can live independently…take care of their selves..then this article might have some validity…but if they must have caregivers…then no…they are not capable and decision making needs to be left to those who do not have the disease…their rights need to end where the caregivers begin…because its a long and hard journey with many tough decisions along the way that must be made with clear thinking….

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  3. Whole thing just reeks of denial…

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  4. Neurodiversity!?!?….This is absolutely ridiculous…They have a fatal disease which not only affects memory and cognition..but personality…common sense…safety….you name it…the rights that need to be considered here need to be for the family who must deal with this…in the later stages..these people can be incapable of making the simplest of decisions…are prone to wandering…and need full time physical and mental care…they are not neurodiverse…they are very ill…and of course decisions need to be made for them…it is beyond cruel to think after a certain point that they can make proper decisions and run their lives..my loved one can’t even order from a menu or remember to drink water or fix a sandwich…c’mon…….

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  5. And as for cheat sheets…helps…I suppose they might help some…we tried…she forgets to look……

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    • My adult daughter is autistic and always forgets everything. Lists, and notes do not help. They can be right in her face and she can’t “see” them after the first time. I have to physically go remind or I learned a trick. She responds when her phone rings, or blings. I set up reminders on the phone and I text her from within a 1200 sq ft home. She doesn’t feel offended, and she still functions. Not sure it would work with dementia, but it’s worth a try.

      Reply
  6. I’m sorry..although they may want rights…who doesn’t?…the mere progression of the disease erodes that…and rightly so…there is a point…when family must step in and take over certain rights…whether they agree or not…sadly they must often be over ruled…because dementia is not just memory loss…it is a total brain breakdown that encompasses personality…memory…sequencing…language…motor skills and hugely…judgement…common sense…This is why Dad gets car keys taken away…mom gets bills paid…and cooking curtailed so she won’t burn the house down…you simply cannot let them become a danger to themselves or others…because a demented mind wants to retain some freedom that they are obviously incapable of handling…you let them do what they can…with oversight…but certainly in the case of dementia…you are not going to let the inmate run the asylum….:(

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