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The Stigma of Alzheimer's and Dementia: How to Cope

People stare. Most aren't unkind, they are just curious. But when someone "different" from the norm becomes part of their environment, they often oogle – without understanding how this affects others.

Anyone who has cared for a disabled child knows this. Anyone who has a visible disability of their own knows this. However, people who care for an elder with dementia may have more difficulty coping with the stares of the public because the person they are caring for was once their dignified father or magnetic mother. The pain of seeing others stare, not knowing how this person was robbed of his or her cognitive abilities, can bring out the little brat within us.

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When I used to take my dad to his doctor appointments at the local clinic (which was often since he had to have many skin cancers removed), I was also faced with the challenge that I never knew "which dad" I'd be escorting.

Dad's dementia descended, full blown, overnight following a surgery. This dignified intellectual who made it his life's work to be considerate and caring to others was suddenly capable of becoming a spectacle at a moment's notice. When Dad was sleepy, and I was wheeling him into the clinic, he was basically ignored. I could take him to his appointments in the para-transit bus, they'd wheel him off and I'd be on my own with dad in the clinic. But a sleepy Dad was a quiet Dad, so he didn't stir much interest.

Sometimes he was awake enough to know what we were doing, but again, those times were fairly low key. Anyone paying attention could note issues, but those looks came and went quickly.

However, when Dad was deep into one of his ultra-demented states, he did provide a show. A time I remember well was when he was alert and happy as could be, which should have been a positive thing. But in that mode, he was loudly having a conversation with someone who was not there – in Spanish, his second language. He was waving to "his public" as though riding on a parade float. Of course, people stared. And the little brat in me wanted to yell, "He's smarter than any of you! He can't help this – so stop staring!"

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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