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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Bioethics and dementia

Just saw this site, Nuffield Council on Bioethics, and read their work on dementia.

I have only one word. Wow!

Sometimes, someone catches every thought you have or could have had.

Every section, every point, every sentence resonated. I wish  could make this compulsory reading for…oh, well, everyone, because dementia and caregiving is something that affects everyone. Anyone can get dementia, anyone can be thrust in the role of a caregiver. And even if not, there are people around you who are patients or caregivers, and they deserve a life, too. What I loved about these reports is that they address a wide range of impacts. They don’t just talk about the patients’ right, they acknowledge the carer, and they acknowledge the role of society in it all, even that of shops and restaurants a patient may visit (or should be able to).

Dignity. Ethics. The right to life fully, despite the condition. The dilemmas and difficulties. The carer’s own life, and the balancing act. How every case is different. How difficult it is. How it hurts. What can help. It’s all there.

I thought I would place a summary here, but I can’t do justice with a summary, so go ahead to the Nuffield download page and have a look yourself….

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Palliation

A support group meeting I hope to attend will be including an expert who will talk on palliative care. I am really looking forward to this meeting. Such meetings provide me a forum to share my experiences and insights with others, and also get input from them. There’s nothing as effective as interacting with fellow-travelers on this caregiving journey, where we get a compassionate and helpful environment to understand how we can handle our roles effectively.

The meeting is particularly welcome right now because of my changed caregiving situation.

Around three months ago, my mother slipped into a bed-ridden state. She nods and smiles occasionally, but does not talk, except for a word or two–around five words a day 😦  .  She cannot prop herself up on bed, or turn sides without assistance.  As I, along with the medical and nursing resources available to me, examine ways to improve her situation, I am also trying to adjust to this new reality. Stuff that was priority a few months ago seems trivial, or at least, not important in my immediate context, and I am redefining my life.

One casualty along the way has been my blogging. It is as if I had decided that I will blog only when I am free to do so, and when I am feeling good and relaxed enough to compose something. I suspect that’s not going to be likely for a while, and so I am wondering whether I should blog anyway, even if the posts are small, to share my current caregiving situation and the thoughts it brings to me. I haven’t decided yet, but perhaps there is a merit in sharing this part of my life as it happens…

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