As I alluded to in my initial blog post, I started serving persons with dementia as part of a specialty house calls practice over a decade ago. During this time I had the opportunity to serve many persons with dementia and their caregivers. However, from the start, I knew something wasn't quite right in how these patients were being treated. I kept receiving calls from home health and hospice clinicians asking what were some very basic questions about dementia care. Being a PhD student at the time, I wondered if there had been any programs reported in the literature specifically for persons with dementia receiving home healthcare or hospice, and I was astounded by the lack of research in these areas. Home based care, helping persons with dementia to stay in their homes, and helping their caregivers through this process, is so important, yet it largely with few exceptions was not covered in the literature. In the end though, it wasn't the literature that made this the focus of my career, but this story:
I was taking care of a patient, we'll call her Jane, who had Parkinson's Dementia. She resided in the memory care unit of an assisted living facility as she had severe dementia but still could express herself from time to time and show pleasure in life. Jane was receiving hospice care and had a wonderfully dedicated hospice nurse. This nurse called me one day and said, "you know, I think Jane is declining, she's not talking any more or eating or drinking, should we call her family and let her know." I asked her in what way Jane was declining and she said that Jane was no longer speaking and was just sitting in her wheelchair mute. As an experienced dementia care provider, something just didn't sit right, and I asked her to hold off and would make a visit that day to see Jane.
When I got to Jane's residence, I also saw that her personality had changed and while her eyes were open, she was staring out in fear and was sitting still in her wheelchair. This was a new, acute change, in behavior. Upon performing a head to toe assessment, I found that Jane had developed a stage III pressure injury on her coccyx. The cause of Jane's change in behavior was pain from an avoidable pressure injury. While the pressure injury took several months of vigilant care to improve, the pain we managed right away, in this case, since she was already on a standing dose of acetaminophen 1000mg 3x daily, we discontinued it and replaced it with a half a percocet (5/325) 4x daily. This did the trick. I came back to see Jane the next day and she was back to her usual self.
When I went back and talked to the hospice nurse about the case, I asked her if she had performed a head to toe, and she said "no, I didn't want to disturb her and cause her discomfort." I asked if she had ever heard of delirium, and she said she had but that she didn't think persons with dementia could develop delirium. After providing 1:1 education to her about delirium superimposing on dementia and that acute changes are not always "a turn for the worse" but can be caused by another underlying clinician, she said she had never been taught any of these concepts.
So, it is possible, that if I had not been able to go out on a house call, the patient would have suffered significantly more. Even more heart wrenching was that she could have died prematurely as she would have developed worse and worse delirium from her pain, and dehydration would have onset. Instead, Jane lived another 4 months where she still could interact and take joy from meetings with her children and grandchildren, even if she didn't always know who they were. She passed away peacefully in her sleep from an aspiration pneumonia.
I feel blessed that I got to help Jane, but this is a scene, maybe one with different details, or different symptoms, that plays out in home health and hospice cases across the country all to often, where basic good practices are not followed not because the clinician doesn't care, but because they don't know and don't have the resources or training to effectively care for the person with dementia.
This was the inspiration for Aliviado, that it is possible to create a systematic program to improve quality of care in organizations that serve persons with dementia and their caregivers. And now, with its final formation after years of development and research I hope that we can make many more cases like "Jane's" be a thing of the past.