Human costs of concealing a dementia diagnosis

Sometimes, even after a doctor has confirmed that a patient has an irreversible dementia, the doctor may not tell the patient or family about it, thinking there is no cure, so nothing can be done, why upset the family unnecessarily? The note below expresses my view on this. (I am not talking of situations where diagnosis is delayed because some doctors do not know enough about dementia, which is a vast topic of a different nature)

Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict. They sometimes even split up or fight legal cases because the patient misunderstands/ forgets things, says wrong things, flings accusations, takes wrong decisions, gets violent, or even acts in an uninhibited or “vulgar” way. Such painful situations could have been avoided if family members had realized that the behaviour was because of a dementing disease. Family fortunes are sometimes squandered because families, unaware of the dementia, let the patient take major decisions.

Essentially, not knowing that the patient has dementia means that families continue their old ways of interacting with the patient, which often makes problems worse for everyone concerned.

Many families feel very upset when they realize later that their doctor had known about, but chosen to conceal the dementia diagnosis. Family members deeply regret years wasted in bitterness and bewilderment which knowledge about dementia would have reduced; they continue to feel guilt about things they said or didn’t say, things they did or didn’t do, for years after the patient’s demise.

On the other hand, families aware of the diagnosis are able to change their ways of talking to and helping the patient. They are able to arrange things so that they and the patient can enjoy what is still possible rather than only notice the reduction in capabilities. All this improves the quality of life of the patient and the family, even if the underlying dementing disease cannot be cured.

Families aware of the diagnosis are also able to re-arrange their lives to minimize the impact of dementia caregiving on their other responsibilities. They can plan for the caregiving required across years by rearranging business and personal commitments, relocating their home, changing jobs, deciding how to share work with siblings, etc.

Then, of course, let us consider the patients’ right to know, especially as they may be worried by what is happening to them. A lot of patients diagnosed early have talked of the sheer relief of knowing that there was a reason they were facing the problems, that merely knowing a diagnosis reduces their stress and makes them more capable of handling things, even if there was no medical relief possible for their form of dementia. They feel better off knowing the diagnosis though they may not always remember it (thanks to dementia).

I believe the debate on whether doctors should reveal the dementia diagnosis is not confined to India, it exists in other countries too. Perhaps some doctors don’t understand the human cost of their silence about the diagnosis; to these doctors, if there is no medicine, there is no point telling people of the problem. Their concern centres on only the medical aspect, and they view the debate of whether to tell or not as “academic.”

Currently, even if the doctor has figured out that a patient has an irreversible form of dementia, the doctor may or may not tell the family; the concealing or revealing of the diagnosis depends on the individual doctor’s conviction about revealing the diagnosis, and how knowledgeable and sensitive the doctor is about problems beyond the ones medicines can solve. The problems of living with dementia, so to say. Not just the academic listing of symptoms, but the facing of the problems in real life. Currently, go to one doctor and you will get appropriate information and support; go to another, and you may hear something wishy-washy about how such problems happen to some people when they age.

Ideally, it would be great if patients and families were confident of some sort of minimal level of information and support from doctors, regardless of the doctor’s personal convictions.

From what I remember, some decades ago, there was a similar reluctance amongst many doctors regarding revealing a “cancer” diagnosis. That has changed, possibly because cancer has been “de-demonized”.

Regarding dementia: maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening. They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. And maybe even create, as a community, suitable guidance that all doctors will conform to.

Definitely the patients and famililes would be better off for it.

This is my opinion; I’d love to hear your views.

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About doctors, hospitals, healthcare, and a dementia care support wishlist

One thing that concerns me deeply, both as a caregiver and as someone interacting with many other caregivers, is that luck plays a big role in the quality of support received from doctors and various medical support systems. Many times, alas, it is bad luck.

There are dedicated, compassionate, and well-informed doctors who support family caregivers through timely diagnosis, sensitive handling of the explanation, and appropriate medication with due attention towards possible side-effects. They also guide the families to various support systems and counselors who can then help the families care for the patient without the caregivers becoming basket-case burnouts themselves. We also have GPs (General Practitioners) and family doctors who notice the early symptoms in a patient and alert the family about the need to check for dementia, and direct them to appropriate specialists.

But this is rare.

The Dementia India Report 2010 admits that awareness of dementia is low even amongst the medical community and support providers; some excerpts:

…there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals

There is no structured training on the recognition and management of dementia at any level of the health service

Health care services remain insensitive to and do not provide the much needed information and support for carers and family members

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Dementia Awareness in India: Some Recent Observations

Some days ago, I was asked whether dementia awareness had improved over these last few years in India. Not an easy question to answer, for two major reasons. One, I don’t socialize much, and most people I end up meeting are people I know because I am a caregiver and a volunteer in dementia care — obviously a biased sample. Two, even when I do get to meet other people, I don’t really go around surveying them to understand the level of dementia awareness.

But I do have some recent anecdotes to narrate –  all these instances happened in the last few months.

Earlier, when I met people outside my dementia care circles, I would not mention my caregiver role in any detail. All I’d say was that my mother needed care. This was because I found most people uncomfortable with any mention of illness, and anyway they did not understand dementia. Even a factual statement from me about what occupied a large portion of  my life was enough to make them start avoiding me, as if getting pulled into a caregiver role is contagious.  But for the last two years, as I have increased my blogging and my volunteer work in dementia care, if someone asks me what I “do”, I say I am a caregiver and that I also do volunteer work in the area of dementia care. This has led me to some of the experiences that I am sharing below.

I have qualified in engineering and management from reputed institutions, and worked in well-known organizations before starting my own consulting practice. So there are people who expect me to be a “professional” and whom I meet in various alumni meets. It was in one such alumni party that I met a high-profile social worker, whom I shall call ”Cee”.  A person in the mid-50s, with a family that included parents and elderly in-laws, Cee spends most of the time helping some big volunteer organizations with their strategy, getting them funding, doing  advocacy – things like that.

Cee and I got talking, and I tried to understand more of what Cee was doing. I was asked, in turn, about my own work and career, and I explained that I was a dementia caregiver and volunteer. Cee looked blank at the word “dementia.” So hey, I have practice on this, and I gave Cee a very simple explanation of what dementia was. Blank. I gently pointed out that, as Cee lived with four elders in their seventies and eighties, and probably knew many others in that age group, perhaps this could be relevant, because otherwise Cee and family could mistake early stages of dementia with normal ageing, and thus miss the window where treatment was effective. Also, there are reversible dementias.

Cee was polite, and made the usual, social comments, but I did not sense any real interest or curiosity. I was a bit disappointed; to me, Cee was the profile that needed to be aware of dementia  — because of age, living with elders in high-risk age groups, and because of Cee’s social work background.  But I reminded myself that dementia is probably not appropriate party talk, and we exchanged e-mail ids and moved on to the food tables.  We sent each other emails later, and I repeated a few basics of dementia and gave links in case Cee wanted to read up more, but I got  a feeling that Cee felt that dementia was irrelevant to Cee’s personal situation, and just another sphere of social work.

At the next alumnus meet, I encountered another person (let me call this person ”Dee”). When, at introduction time, I mentioned that I was a dementia caregiver and volunteer, Dee took me aside. “Tell me, if you don’t mind,” said Dee. “What is the difference between Alzheimer’s and dementia?” Over the next hour, we nibbled at snacks as I explained things about dementia and answered Dee’s questions.

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Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.
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Finally, some clarity about the diagnosis

After our interaction with the second specialist, my mother was understandably quite upset with neurologists in general, and not willing to venture out again.

Our GP, who was also a neighbor and knew us quite well, had no suggestions about what we could try (other than try another specialist). He said the problem was most probably neurological, but did not give a name to it (I think he suspected the diagnosis, but felt it had to be delivered by a specialist).

My mother, meanwhile, tried a round of homeopathy, gave up. She would tell friends about the walking problem, and even if she didn’t, it was visible enough. A family friend brought along a doctor sister, who examined my mother very carefully, and then said she suspected Parkinson’s. This lady was working as a volunteer doctor in a village and she told us that problems like my mother’s were often undiagnosed. She reiterated that people usually labeled such problems as ageing, but these were not ageing, and we would have to take care of her as the problem would get worse. This was a short visit; perhaps she would have said more if we had met her for a longer time.
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When the specialist laughed at her

The first specialist we consulted may have shrugged off follow-up visits, but his manner had been so unsympathetic and the information he gave so scanty that we were not sure we’d done enough for the situation. On the other hand, the whole experience had also left all of us–and especially my mother–reluctant to go to another doctor. My mother felt insulted, and probably was shaky inside because she was experiencing more cognition problems than were obvious to us. Now she did not feel she could talk to a doctor…

It took my mother a while to agree to consult another doctor. Her walking problems were alarming by now, and her memory loss quite obvious within the family. We finally narrowed down to a hospital that specialized in neurology, and where every doctor was a superspecialist. Surely my mother would get suitable attention there.

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Our first consultation with a specialist

My mother’s initial problems were mainly related to balance, though her memory loss had also started by the time we reached our first neurologist. Her balance and coordination problems (ataxia) were visible, while problems such as memory loss, disorientation, and inability to do things were in a very initial state.

I was only peripherally involved in her health at that time; I did not see myself as someone responsible for her health and helped out when she asked for help. My parents were independent, and would have resented any “interference” and I was engrossed in my life. Most of us do not get involved in parental health unless pulled into it, which often happens only after symptoms have crossed a threshold of alarm.

My mother complained of minor dizziness problems in 1991/ 1992. As she had a medical history of cervical problems, and the dizziness seemed minor and very occasional, she was not too concerned. In 1992,when I’d gone out of town for a trip, my mother drove to Pallika Bhawan, then visited an emporium on Baba Kharagh Singh Marg, where she swayed when climbing one of those arty spiral staircases. She fell, hurt her head. There was plenty of blood. A good Samatarian rushed her to a hospital where they stitched up in her head. She managed to remember the home phone number, and my father was contacted. The doctors did a CT scan which was normal,and their report mentions no “age-related” anything in it.
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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.
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Not Alzheimer’s or Parkinson’s? Then why’s there a problem?

When my mother started facing balance problems, I had no clue what was happening, but I’d heard of Parkinson’s and that was my first suspicion. When she started facing memory loss, the only disease I knew related to that was Alzheimer’s. I didn’t know much about either Parkinson’s or Alzheimer’s, but I’d heard these names, and seen articles on them. I’d made a quick mental note saying I may need to know more about these problems some day. I’d even kept some cuttings “carefully” for later; I wonder where they went 🙂

As it happens, my mother’s diagnosis was neither Parkinson’s nor Alzheimer’s. We went through multiple neurologists before I was given a documented diagnosis, and I took pains to memorize the phrases in it so that I could tell anyone who was interested the exact problem.
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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.
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