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

In a list identifying “Barriers to dementia care in India” (Figure 4.2) the report includes “Poor awareness even within the medical fraternity”

My own caregiver experience includes incidents where specialists examined my mother but did not warn me where her cognitive decline was headed, and even when a kind doctor diagnosed her (and should I really feel so obliged to a doctor for doing what I went to him for?) he did not direct me to caregiver resources or mention their existence in any form. For well over a decade now, I have regularly faced problems getting medical help from my mother from non-neurology doctors or from hospitals, with doctors not listening to me and depending on my mother (who was clueless and confused and intimidated), doctors insisting I leave my mother alone in the emergency ward and then leaving her unattended, doctors saying they cannot do anything for her because she does not “comply”, technicians rude to her because she cannot follow simple instructions…it is a long list, and I have blogged about some of these earlier.

Nor am I the only one with alarming anecdotal experience. I have heard of similar stories from other caregivers, and just as a brief sample for hospital and nursing support for dementia, you can check a detailed caregiver interview here. Or another interview with a cursory initial diagnosis and lack of alertness on side-effects here. Yet all caregivers I talk to also feel deeply obliged and grateful when they happen to (usually after repeated misadventures) reach a doctor who is sensitive and informed instead of being ignorant, dismissive, disbelieving, or unconcerned.

And again I wonder, should getting a diagnosis, getting information and support from the medical fraternity be so heavily dependent on luck? I know individual practitioners will vary on how good they are, but perhaps there needs to be a minimal standard, or an average, which gives patients and their families more hope for a diagnosis and support.

So here is my wishlist related to healthcare. A disclaimer: I do not know the medical education and re-qualification systems in India nor do I know to what degree the medical fraternity defines or enforces protocols of treatment, and I am totally clueless about the degree to which the medical and nursing curriculum currently incorporates dementia, but here goes, anyway:

  • The curriculum of all healthcare professionals (doctors, nurses, technicians who operate medical equipment, and other healthcare staff) should include the basics of dementia; at a minimum, it should include how to communicate with and support such patients.
  • The continuing education requirements of practicing doctors (non-specialists) should include a minimal understanding of dementia
    • They should be able to spot a possible patient and redirect this person to a specialist
    • They should be able to communicate with and support such patients and also know how important the family member’s input is while interacting with a patient
  • If India does not have a continuing credit scheme, then a doctor who qualified years ago may not have had the opportunity to learn about dementia and if such is the case, perhaps the medical council (or any other body as appropriate) can circulate simple instructional videos and booklets on handling dementia patients to all current practitioners with a simple test and a certificate that the practitioner can display. While some doctors are self-motivated enough to read material if it is made available, others may be too busy or uninterested to do so without an incentive.
  • There should be clear guidelines for clinics, nursing homes, path labs, hospitals, etc., on how to support dementia patients. For example, family members should be allowed to be present with the patient, the patient should not be harried for answers, and the family member’s input should not be discarded.
  • Given the widely acknowledged fact of under-diagnosis of dementia, medical associations and other concerned bodies should encourage family doctors and hospitals offering “health checkups” to include preliminary dementia scanning as part of geriatric checkups. Inclusion of such preliminary checking for dementia in normal checkups of elders(just like BP and fasting blood sugar is) will increase early diagnosis and also improve awareness and alertness towards dementia; patients/ family members may then spot the symptoms themselves and approach doctors in time.
  • Regarding specialists who actually diagnose and support patients and interact with family members:
    • Specialists should get updated current information on how to perform a complete diagnosis, on how to rule out/ treat reversible causes, and what the current medication and side-effect understanding is. This information changes dynamically, so circulation of updates is an activity that some national body hopefully performs at a desirable frequency 🙂
    • Specialists should be sensitized about the effectiveness of non-pharmacological interventions by family caregivers. Perhaps this does not strictly fall in the scope of medicine, but it will be very helpful to caregivers if specialists are aware of, and convinced of the utility of these interventions.
    • Specialists should have access to guidelines on how to convey the diagnosis (currently, this varies very widely in practice).
    • Specialists should have information dockets that they can pass on to families so that families can understand the diagnosis and learn how to plan and cope. To expect a ten minute talk (often less) to be enough for the family to grasp dementia and its impact is grossly overoptimistic.
    • Specialists should not hesitate to provide any tips and suggestions they have on home care, and it will be good if they can let the family get a realistic and comprehensive picture rather than just know about medicines (and lack thereof). There could be recommendations on what the specialists tell caregivers (and this should include helping them avail caregiver support mechanisms and services).
  • End-of-life care and palliative care support should be available for dementia, and doctors should direct families to such specialists and guide families for the options and decisions.

I think one problem is this: often doctors see their role as more limited than what the patients and their families see their role as. Perhaps many doctors feel that advising a family on home care is beyond their responsibility area, and therefore do not comment on this. But if families are not directed to alternate sources of support, their “take home” message at the end of the doctor visit is that nothing can be done. Family members therefore do not realize that even if there is no medicine, other changes at home and in the way of interacting with the patient can make a lot of difference for the patient and caregivers. Families consider doctors as the most knowledgeable persons for any disease, and when the doctor does not say anything, the family assumes that means nothing can be done in any way.

I can speak for myself…When I took my mother to doctors for her various problems, I assumed that the doctors would let me know anything that would help my mother, or that they would point me to it. When one doctor claimed my mother’s problems were normal for her age, I assumed nothing could be done. He did not warn me that this cognitive decline could worsen and that I should get checkups done later. Even after another doctor gave me a diagnosis but the medication he prescribed led to hallucinations and he admitted that medicines don’t always work, again, I assumed that if there are no medicines, I could do nothing proactive to improve my mother’s life (or mine). The doctor told me that I should keep her as active as possible and be ready to help her more and more, but that sounded generic (like helping any old person) and did not set me on the path to look for caregiver tools. I dare say specific caregiver tools are not part of medical advice, but the point was, I did not know that I could benefit from such non-medical advice and that it was available. A lot of my problems (and my mother’s) would have reduced had I received even a half-hour worth of guidance or at least, pointers.

So that’s my wishlist above, and as always, I would love to hear what others have experienced, and what they think about this wishlist…

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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.

6 Responses to About doctors, hospitals, healthcare, and a dementia care support wishlist

  1. anusuya says:

    My two thoughts: The nodal agency (lets says ARDSI in the absence of any govt approved centre) should have a citywise list of good and effective hospitals/diagnosis centres/doctors they would like to recommend. As you mentioned, misdiagnosis or dismissive attitude of the doctors often delays diagnosis. This leads to (possible) faster deterioration of the patient, squabbles in the family about the patient’s behaviour in the early and mid stages, often leading to his/her further isolation. I speak from my own experience. After years of dismissive attitude by doctors and misdiagnosis, my father was diagnosed with dementia when he couldnt walk or perform any daily activities. Even then Vimhans, after 2 months of keeping him, dismissed him as not dementia but “something else” (which they couldn’t explain, of course) simply because his memory was more or less intact. Thankfully, I had connected with you by then and you guided me to a proper doctor (Dr Om Prakash) whose took a only day for catch the problem. Even though the disease is degenerative and his team hasnt been able to treat Dad (simpy because no treatment is effective or available) but our understanding of the fact that dad’s behaviour has a reason has changed his life. From being all of us angry at his mood swings and crazy demands, and such other behavioural problems, we now try to go beyond our abilities/patience to make him comfortable. But the guilt of those years of us screaming, yelling and finally isolating him stays with all of us. Only if someone had guided us to check with some doctor like Dr Om Prakash and NOT told us to consult “some good neurologist”. Because good neurologists, howsoever good they are at what they do, often miss out signs of dementia. They call it personality disorder, psychological problem and what not (in our case one doctor even said it was his marital discord with mom and started counselling both for marital harmony!!!)

  2. kalpana malani says:

    In my case when I realised that my mum had a memory problem I asked my GP – he was clueless about what had to be checked – luckily my friend who worked at Nair recommended a visit to the memory clinic at Nair where a proper diagnosis along with a psychological evaluation was done. I did tell my GP about the clinic and suggested he tell his patients too.Maybe we need some film star to appear on TV to drum up awareness about dementia the way AIDS, Polio vaccine, Eye donation etc has a presence on TV.

    • swapnawrites says:

      Kalpana, thanks for sharing. Yes, we definitely need informed GPs because that is the person that families approach. As for publicity, I think that takes a lot of lobbying and ends up competing with other causes. I don’t have the faintest idea how the powers-that-be select what to highlight through campaigns and what not…

      I also wish that families of famous persons who have had a patient with dementia would go vocal about it in a big way. But somehow it is not happening. I wonder why.

  3. anusuya says:

    Ditto me. So we add that to our wishlist too: more awareness on dementia. And yes, may be Shah Rukh Khan or Amitabh Bachchan to appear for TV ads. Awareness could also include big banners, posters on city flyovers or traffic lights or big ads in news papers from the govt issued in public interest, giving some 4.5 give-away signs of dementia and where to go and what to go. As Kalpana says, just like they do for TB or polio. We just need more awareness and on ASAP basis… rest will slowly fall in place hopefully.

    • swapnawrites says:

      Yes, awareness is the starting point and we need it by the ton. I hope people in a position to lobby for visibility of the cause are doing so…

      Also, some of these well-known persons have faced relatives with dementia in their own lives. I wish they would take the initiative, or be persuaded to.

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