On diagnosis, on doctors who may not know or care

One thing that bothers me is this whole business of diagnosis of dementia and how often it gets delayed and how different specialists say different things and confuse us and delay us in getting started in adjusting our lives to this reality…

…and the problem continues even after diagnosis, because when we take the patient to doctors for other ailments, many doctors and medical staff do not understand how having dementia may affect the patient’s ability to communicate problems or explain what happened.

The Dementia India Report 2010’s foreword by Dr. K Jacob Roy states:

It is estimated that over 3.7 million people are affected by dementia in our country in 2010. This is expected to double by 2030. Despite the magnitude, there is gross ignorance, neglect and services are scarce for people with dementia and their families.

Dementia diagnosis is often delayed for multiple reasons.

For example, many people do not consult doctors when elders face memory problems, even if these problems are severe enough to affect their functioning and medically fall under the definition of “dementia.” What many people do not realize s that such memory loss is not “natural” with age and could even be caused because of reversible medical problems that respond to treatment. Quoting the Dementia India Report 2010:

 Some less common causes of dementia (like chronic infections, brain tumours, hypothyroidism, subdural haemorrhage, normal pressure hydrocephalus, metabolic conditions,and toxins or deficiencies of vitamin B12 and folic acid) are particularly important to detect since some of these conditions may be treated partially by timely medical or surgical intervention.

Unfortunately, not all doctors in India are alert about dementia. I suspect this is because they are part of a culture where, around them, all the years they have grown up, they have seen people treat dementia symptoms as part of “normal ageing.”  As part of the many interviews I’ve conducted with caregivers, one common observation is that doctors sometimes make caregivers and patients (in early stages) look silly by saying things like “what did you expect at your age!”

While some doctors are quick to diagnose the patient and provide information, others are not. But if families consult a doctor who acts dismissive, they may decide not to approach another doctor for a second opinion. They may be convinced there is no problem, and no need to investigate any more.

Dementia India Report 2010 states that: The public awareness about dementia in India is low.  

Here is a section from the report elaborating on this (PwD stands for Person with Dementia):

The typical features of dementia are widely recognized, and indeed named “Chinnan” (literally childishness) in Kerala (Shaji et al, 2003), “nerva frakese” (tired brain) in Goa (Patel and Prince, 2001), and “weak brain” in Banares (Cohen, 1995). However, in none of these settings was there any awareness of dementia as an organic brain syndrome, or indeed, as any kind of medical condition. Rather, it was perceived as a normal, anticipated part of ageing. Primary care doctors do not encounter many cases in their practice and there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals. Media interest in dementia and related healthcare issues remain low. This general lack of awareness has serious consequences.
1. Most PwD and their families do not understand dementia as a health problem. Hence, dementia does not get recognized early and the
diagnosis is often delayed.
2. There is little help sought from formal medical care services (Patel and Prince 2001) .
3. There is no structured training on the recognition and management of dementia at any level of health service.
4. Health care services remain insensitive to and do not provide the much needed information and support for carers and family members.
5. While family members are the main carers, they must do so with little support or understanding from other individuals or agencies

6. There is no constituency to place pressure on the government or policy makers to provide more responsive dementia care services.

For lay persons who assume doctors will detect problems and help, this is bad news indeed. It means that if we approach a doctor who is not well-informed of dementia, we will not get a proper investigation. A reversible dementia will not get treated. Early dementia patients will be deprived of the benefit of drugs (early dementia is a stage where drugs sometimes help reduce the intensity of symptoms). Even for dementias that are irreversible, the families may not get advice on how to handle the patient.

Sometimes, even though a diagnosis is given, carers do not get the information and advice they need, such as how dementia will affect the patient and how it will progress, and how to cope with it. As the above quote from the report says: While family members are the main carers, they must do so with little support or understanding from other individuals or agencies

That makes it all the more important for us to be alert about dementia in our family and friends circles.

A problem I’ve seen again and again, as have many acquaintances, is that doctors are not alert about cognitive decline and memory problems when checking the elderly.

While doctors often check an elderly patient for BP and suggest a baseline ECG or fasting sugar level reading, even if no symptom is reported, they do not think of conducting a one-minute cognition test for the elderly. When someone mentions poor memory, they often console and say “it happens with age” or suggest a tonic or Chyawanprash or start complementing the person and saying they are doing fine. It is bad enough that patients (and their families) assume their problems are an integral part of old age; this general lack of concern of many of the doctors adds to the problem.

Some doctors are anyway dismissive of problems of elders.

An elderly gentleman I knew, very alert mentally, but very frail physically, once mentioned to a doctor that he was having problems recognizing people when walking, and asked whether he should be getting his eyes tested. This gentleman had suffered a few falls, and was osteoporotic. The doctor laughed and said, Can you see me and recognize me (the doctor was sitting opposite this gentleman). The gentleman nodded. The doctor laughed again, and said, Then why bother to get your eyes tested? How does it matter whether you recognize someone at a distance? And that was that.

I’ve often read a guideline for fall-prone people saying that one reason for falls is poor vision, and surely it was for the specialist to decide whether this gentleman’s vision was good enough or not, not the decision of this GP? This sounded like mockery to me, like saying, hey old man, what do you expect at your age, 20/20 vision? Come on, stop expecting everything to be okay.

While not all doctors think this way, I’ve come across enough doctors who reduce their standard of care for elders, and even discourage patients from doing things that would improve their quality of life, implying that they are “old enough to not expect better.”

And here’s a bit of personal anecdotal data on how ignorance of dementia amongst non-specialists hits us.

My mother often needed to be rushed to hospitals for eye problems. She’d suddenly complain of extreme pain in the eye, her eye would be swollen and she could not open it. She could not explain what had happened, and I’d got no way of knowing whether she had banged her eye and hurt it, or whether the problem was internal. As she was a glaucoma patient, and this could be an emergency, I’d give her the emergency med and rush her to a hospy, where she again could not answer any questions. They’d play safe and double her galucoma medication anyway. After a few such incidents, she was on to an extremely high dose of medication, and I began wondering whether she really needed it. So I asked a glaucoma specialist and she suggested a test to check the glaucoma.

Turned out the test unfortunately needed my mother to follow a few simple instructions (stare at xxx spot). The technician wanted her to keep her head still. He’d tell her to keep her head still, and she’d nod to show she understood. He would again repeat the instruction and ask her if she’d understood, and she’d nod to show. I told him it would be simpler if he didn’t ask her whether she’s understood, because she wa sonly nodding to show she understood, but he couldn’t understand that 😦 After half-an-hour of repeated frustration of all concerned, he beat his head and told her that she was making him go mad. She did not nod her head this time. Finally, I went to the senior doctor and explained what was happening, and within two minutes she had checked the eye herself without uttering any instructions.

The problem is usually higher with junior doctors, who are very fixed on procedure. They will ask my mother questions, she will give wrong answers (how long have you have the cough, where is it hurting, what happened yesterday). I’ll pass the junior doctor a sheet where I’ve already written the full sequence of events and so on, and say I’ve written this because my mother has memory loss. The sheet contains a note with my mother’s formal diagnosis. The junior doctors frown at me, brush away the sheet, and inform me self-righteously that they’ve been trained to get the information from the patient and not the relatives. Senior doctors are usually better, but not always. Sometimes they all act like they’ve judged you to be a negligent carer covering up for a delay in seeking treatment by lying 😦

But back to diagnosis…

A diagnosis is the first point in understanding the patient’s state and preparing oneself to give appropriate care. Persisting to get a satisfactory diagnosis that explains the problems becomes the responsibility of the family in an environment where awareness is low, even amongst the doctors. I’ve known some families that got a diagnosis from the first doctor they consulted, but there are others that had to meet many doctors before they finally got a diagnosis that explained the patient’s problems. People give up, too, as patients are not always cooperative in visiting doctors (they don’t know they have a problem, or do not want to admit it). Or people are scared that the patient will be diagnosed as being “mental”, something that has a lot of stigma to it in India. But persisting can help…

Over the next few days, I’ll share my own experiences of getting a diagnosis for my mother. It took three specialists…

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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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