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Quality Dementia Care: A Plea from a Patient Himself

Posted by on 7/24/2014
Caregivers of a person with dementia see the person's personality change - some say the person is "fading away". But is the person truly being "lost" or is he or she still there, just in a different fashion? Richard Taylor, PhD, a retired psychologist and author of Alzheimer's: From the Inside Out lives with dementia and has his own thoughts on how a person with dementia can be viewed, which he shared on a recent online conversation amongst dementia caregivers.

Richard says, "Every one, every life, every living moment has a quality to it. It may not be what we want, but while life exists so does its quality." When a person with dementia is viewed this way, caregivers might acknowledge that the person has changed in how he or she acts or functions in moments of the day, but does not minimize the importance or quality of those moments of the day.  Different, but still very important.

Richard goes on to beg of caregivers, "Please, please don't give up on us just because we seem to be less and less able to influence our own quality of life, and it times seem unable to appreciate your efforts. We increasingly depend on you to enable us to live as high a quality, as an enjoyable a life as is humanly possible given our disabilities."

It can be tough for caregivers to overlook the misunderstandings, repeated questions, and moments of frustration of the person with dementia and remember it is due to the disease.  New skills need to be learned to instead remain patient and understanding - in effect doing what Richard has asked caregivers to do - "don't give up on us".  Here are some suggestions to help caregivers:
  • Educate yourself.  Knowledge is power.  The more you can understand about the condition, the more prepared you can feel to take on the challenges. If you have found this MindStart blog, that is a great start.
  • Get your support team lined up.  Support groups and people to talk to can be your lifeline.  The Alzheimer's Association has 24/7 help available. Don't isolate yourself and schedule respite breaks for yourself.  
  • Enter the world of the person with dementia.  He or she does not interpret the happenings of the day appropriately, therefore, the responses may be unexpected and may not make sense.  Take a moment before responding to a situation to remember this.

Caregivers, both family and professional, can make the moments of the day quality ones for people with dementia, just as Richard's plea has requested. The place to start is a shift in thinking from viewing the patient as not a "person WITH DEMENTIA" but rather a 'PERSON with dementia" - a person not lost but just hidden by the disease.

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