Decision making for dementia patients

As I mentioned earlier, one of the most frightening parts of caregiving for me is taking decisions on behalf of the patient.

In most aging, the elder takes his or her own decisions, but in the case of dementia patients, decision-making is the caregiver’s responsibility. Is the patient in pain or not, and should I call the doctor? What, exactly, is paining, and how much? Did the patient’s pain reduce with the medication? If the doctor offers a choice, should antibiotics be given or not, if the patient may not benefit from them? How aggressive and invasive should treatment be? Should the patient be hospitalized?

My current phase of caregiving may require tough decisions that my mother can no longer participate in, as she just does not understand anything. There is so much confusing information around, so much “there is no right answer” type of advice, so many pros and cons to weigh.

Let me illustrate with an example.

Consider the decision: if there is a serious medical condition, should the patient be hospitalized? It seems so simple – if a person is unwell, and treatment is more effective in the hospital, he or she should be admitted to the hospital.

But the decision is not as straightforward for a dementia patient. A hospital stay may be good for medical treatment (some may contest that, too), but a dementia patient is traumatized by a changed surrounding. In almost all hospitals, the nurses and junior doctors are pressed for time, impatient, and not trained to handle a confused dementia patient. They expect quick and correct answers to questions like: are you better now, where is the pain. They often (I speak from experience across a number of hospitals) refuse to listen to the accompanying family member and insist they will only listen to the patient (who cannot answer, or answers wrongly). Then, hospitals have rules about visiting hours, food, and a whole set of stuff, so the atmosphere in the ward cannot be made anywhere like what the patient is used to. Patient attendants are not allowed to enter ICU or emergency wards, so the patient is left alone, bewildered, scared. He or she feels abandoned, insecure, and no one rushing around him seems familiar. They poke around the patient with needles, tie armbands to take BP readings, squish gel tubes on bare flesh for imaging equipment. The patient has no idea why he or she is being “tortured.”

The medical condition may improve (or may not, because the doctors cannot communicate with the patient), but the patient is emotionally traumatized.

Two years ago, my mother fell down and suffered a head injury. There was blood all over. We put ice to stop the flow and rushed her to the emergency ward of a well-known hospital .

As she was being wheeled into emergency, I approached the doctor on duty (probably a sleep-zombie on a 36 hour shift). I told him that about her cerebral and cerebellar atrophy and mentioned the precise name of her problem.   I mentioned dementia and said she would not be able to communicate well because of it. I told them she was unable to bear the air-conditioning cold, and that she must be kept warm (I had swathed her in woolens) I handed over her medical files and reports, which included, right on top, a one page medical history summary and current medication details. I showed the page to them while giving him the file.

They shrugged and grabbed the file, very busy with the emergency. They bustled around my mother and shooed me out of the Triage. I kept trying to find out what was happening; they treated me as a disruptive element 🙂

Anyway, after a while, I managed to enter the Triage area. My mother was sitting on a metal chair in her nightgown and without slippers, her woolens on her lap, shivering and obviously scared. She thought I had forgotten her or left her. She grabbed my hand. I made her wear her woolens. There was no doctor or nurse anywhere near her. She wanted to go to the bathroom, and had tried telling them that (those days, she was moderately continent) but no one was listening.

Turns out they stitched her head and took her for a scan, which meant removing her clothes. They never bothered to help her wear her clothes after that.  They did not wrap a blanket around her. They didn’t ask her what she wanted. The scan was normal, so the case needed no further action. Show over, interest over. None of all my cautions and pleas were remembered. It took me another hour to complete the formalities and get her out of that room.

This is what her discharge slip said: dementia with OCD.

OCD? Obsessive Compulsive Disorder? Excuse me? I’d said a variant of OPCA, even expanded the phrase: olivo-ponto-cerebellar-atrophy. OPCA was written in the summary in her file, and to me, it sounded very different from OCD. Possible, the attending doctors, not being neurophysicians, had not heard of OPCA. But they’d heard of OCD, so they wrote that down…

And they’d treated her in a way that would traumatize any dementia patient. Had they not heard of dementia, either?

I didn’t have a choice about taking my mother to the hospital in this instance- a head injury requires a checkup. But it was emotionally traumatic to her and the impact of that visit stayed with her for days.

More recently, my mother injured her eye, which turned a frighteningly-bright red that did not subside. Again, I had to take her to the hospital. The doctors and nurses were considerate and helpful, but even so, my mother showed a distinct dip in her mood for days after it.

When my mother was young, she lost two sisters and a mother to TB and her father to a heart-attack before she turned 12. The TB deaths were particularly bad – this was the era before TB had a cure; the sisters and mother were sent off to sanitariums so that the remaining members of the family (such as they were)  did not get TB. To my mother, as a child, a hospital was where you dumped people to die, and places where family would not visit.

As she grew up, her revulsion/ fear of hospitals reduced, and she was normal enough, but as her dementia progresses, older memories have become stronger than recent ones, and hospitals have reverted to being a punishment and a token of abandonment and death.

How does this affect me as a caregiver?

There may be times I have to decide whether the advantages of hospital treatment outweigh the disadvantages, given her mental state and my personal knowledge of her past and the dread she has. I may feel a hospital is unavoidable for an accident-type of emergency, but detrimental for other treatments, like infections, which can be given at home.

Decisions like this are tough, and often faced by caregivers of dementia patients. What makes them even tougher when people around you don’t understand (and don’t want to understand) how having dementia can affect such decisions. They are quick to judge and criticize/ blame family members, not acknowledging that the carers are trying to do their best.

It is in this context that I find reports like the Nuffield report very helpful. It recognizes the complexity of issues, and sensitizes people to them. I hope to evolve clear criteria for decision-making after studying such reports and other literature – but whatever I do, there is a rather large element of subjectivity that will remain an emotional challenge.

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, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

One Response to Decision making for dementia patients

  1. austere says:

    The image of your mom lost and shivering in the emergency room will stay with me for long.


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