Palliative care in dementia

In a support group meeting I attended in December 2009, I was introduced to the concept of Palliative Care and how it may be applied to a patient with dementia.

The thrust of palliative care is ensuring the patient’s quality of life, and keeping that in focus while taking decisions such as how aggressive medical treatment should be.

A few years ago, I had assumed that medical intervention is a must. If one has an infection, an antibiotic course is inevitable. Last year, in September, my mother’s lab results showed a urinary infection, and the doctor started her on an antibiotic, based on the culture report. It did not work. Again, based on the fresh culture, a new antibiotic was given. Again, no effect.  Medication for the infection was discontinued finally, on advice of the specialist, after confirming that my mother was not exhibiting any symptoms of the infection (asymptomatic infections are often not treated).

While we were lucky that the infection was asymptomatic and treatment was not necessary, the incident still left me shocked. I had not envisaged a situation when, despite the sensitivity report showing the antibiotic was suitable, the medicine would not work. It had not occurred to me that medicines worked only because the body processed them in a way that allowed them to work…that the body can reach a point where it cannot use the medicines fed to it. Suppose, I thought, the infection had not been asymptomatic? Would the treatment have become increasingly aggressive? What is the trade-off between suffering symptoms of a disease as against the stress on a tired, aging metabolic and excretory system which is plied with stronger and stronger medication?

As my mother becomes frail, I can see a number of such trade-offs that will need to be made. She already has swallowing problems, and these are going to increase. Aspiration pneumonia is likely to occur. She is bed-ridden, and though we are using an alternating-pressure air mattress, we are apprehensive about bed-sores. Then, there are other infections, like chest infections, that can occur however well we guard her. There may be a stage when she cannot swallow enough food to sustain her. For all these situations, there are aggressive approaches,but these do not always work, and sometimes they worsen the situation by introducing other problems.

As a lay person I know very little of the trade-offs, but I am keen to understand enough so that when a doctor suggests something I can ask the right questions and understand how the treatment helps, and how it may not help. The concepts of palliative care as applied to dementia seem relevant and worth studying, and I am searching for comprehensive documents that discuss these.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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