A new study published in the New England Journal of Medicine identifies advanced or end stage dementia as a terminal illness. Hard for dementia caregivers to believe, but up to this point advanced dementia was not thought of as a true terminal disease.
This special study was conducted by the Institute For Aging Research of Hebrew Senior Life, an affiliate of the Harward Medical School and involved 22 Boston area nursing homes over an 18 month span. Of the 323 participants with advanced dementia in the study, 177 died mostly from issues like pneumonia, feeding problems or eating difficulties. Those who died had end stage dementia symptoms such as pain, breathing problems, pressure ulcers or aspiration.
The researchers point out that the symptoms seen in the study group are similar to those seen in persons in other terminal experiences such as cancer. This discovery led the researchers to use this study as a starting point to bring attention to the great need for improved palliative or comfort care in the end stages of dementia. They felt that bringing the results of this study to the New England Journal of Medicine would allow the clinical course of advanced dementia to be finally recognized as a terminal illness and proper treatment would follow.
Do you think the results of this study are a surprise? I'd like to hear your opinion. Like many dementia caregivers, I am so close to the experience that I was not surprised in the least. Let's hear from you!
My Mother had Demetia and in her final stages she was refused to eat. She was cold and wanted to just lay down in bed. Her stomach hurt probably from lack of food but she didn't comprehend she was hungry. She did start to turn blue from lack of oxygen and was promptly put on an oxygen machine which helped but her eyes were open wider than normal like she was afraid. She did nod her head when asked if she was thirsty and wanted a drink of water.
She did have pressure ulcers, one on her heel from the sheets and one on her upper buttox from pressure of laying and sitting. I sat with her thru the night holding her hand because she behaved like a toddler not knowing what to do and could not speak. In the early predawn hours her breathing became steady but her eyes were open and fixed with the pupils almost non-exhistant. I'm not sure if her mouth had an automatic reflex of trying to shut when a moist swab was introduced or she thought it was food and she was refusing.
Later in the early morning her breathing became slower and more shallow until she ceased breathing and her heart had stopped. She made no bodily movements in the last hours.
One of the LPN's had stated my Mother behaved like she had given up and had no will to live. I am not sure if this is a common behavior because of the confused state of mind and reverts back to a toddler stage of mentality. If this is the case then during this stage a patient should be treated with extra attention as a toddler would have and possibly Hospice should be recommended to be introduced at a much earlier stage so the patient is more at ease with the volunteers and staff and so the patient's last day(s) are more peaceful, not just for the patient but for the family members as well.