dementia caregiving in India, some preliminary thoughts…

(As this blog entry received both online and offline feedback, and as its content is very relevant for anyone who wants to understand the cultural context of dementia care in India, I have moved the content to a page so that I can keep updating it based on comments received. You can see the page here: The Cultural Context of India and its Impact on Dementia Care.

A lot of people talk of how countries like India have more family values than other countries, and how elders are more valued, cared for and respected here. While many countries end up spending a lot in institutional care facilities for the aging population, this cost is relatively low in India where most families look after their own.

As I see it, there are plus and minus points of every society, and while our setting works well in some ways, I think we should not ignore the problems it can result in. (Note, I am not a sociologist or counselor or any such thing, just an ordinary caregiver sharing my opinion.)

In India, children live with their parents, and their children with them (Going two, three, even four generations). While in many countries a son or daughter living with parents past the age of eighteen can cause a few raised eyebrows, and a married son or daughter staying with parents is far from common, here it is assumed that children will stay with their parents as far as possible. You stay with your parents as a child, as a youngster, as a college student, and after employment, if you are in the same town. You try to be in the same town. After marriage, the son stays with the parents, and the daughter-in-law moves in too, adjusting to the in-laws (food, dress, TV programs, schedule of day, way of talking, etcetera). A daughter, conversely, moves out after marriage to her in-laws place. This is normal. If the employed son is in another city, well, he has to live separately, but he is expected to try and find a job in the same city. Sometimes sons live separately even when in the same city as their parents, but they have to always justify to others why they do so🙂 .

As the parents age and retire/ fall ill (say, first heart-attack, first stroke, first stent operation), even if they were living separately, they move in with the children (or the children move in with them). Usually, when there is more than one son, the eldest son is the privileged person to get the parents.

(The above is just an excerpt. Read the full entry here: The Cultural Context of India and its Impact on Dementia Care.

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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.

12 Responses to dementia caregiving in India, some preliminary thoughts…

  1. Jenue says:

    “most old age homes do not know how to handle dementia patients.”

    I would have never thought of that.

  2. austere says:

    So true. Hurts to read.

    I am watching a caregiver- in his eighties himself- falling apart at having to take care of his wife, who has Motor Neuron Disease/ ALS.

    Helplines.
    Something on involving different generations in home care.
    A database of services. Where to get raw helpers- bais. Where to get a nurse. Where to get special diets, home delivered.

  3. Ekta says:

    Hi…I am a former Dementia care-giver. I am planning to start a support group in Ahmedabad for care-givers of people who’re either terminally or mentally ill. If you have come across other groups in India, please do let me know. It will be an advocacy and therapeutic group.

    • swapnawrites says:

      Hi Ekta

      Yes, there are support groups in India, mostly by chapters of ARDSI (Alzheimer’s and Related Disorders Society of India) which has a website at http://ardsi.org/ (list of chapters available on the site) and some prominent hospitals.

      I don’t think there is anything in Ahmedabad, but you can contact them to see if they know others from Ahmedabad you can link up with, or otherwise get resources from.

      All the best,

      Cheers,

      Swapna

  4. A says:

    Hi

    As the daughter of a patient with FT dementia I really identified with your article. I have faced a complete lack of understanding from my extended family on what this disease has done to me emotionally.

    We have such a poor set up in India. Even the best doctors do not know how to treat a patient holistically- neurologist, physician and psychiatrist is usually needed. It is very frustrating.

    A

    • swapnawrites says:

      Hi

      Yes, it’s a pity our doctors often forget that caregivers need help coping in a holistic manner, and do not direct them to appropriate resources. Sometimes, they focus so much on medicines (and there are no medicines for most situations) that they do not mention other aspects. For example, there are a whole host of excellent resources to assist caregivers handle the situation in ways less stressful to them and to the patient–books, websites, support groups.

      BTW, in case you want to know about resources, I have links to them/ information about them on my website (link given above). I have found support groups particularly helpful for sharing the agonies of caregiving, and getting tips. Many cities in India now have them thanks to ARDSI. Chapter information can be obtained from their website at: http://alzheimer.org.in/

      All the best for your caregiving.

      Cheers, Swapna

  5. Seuli Sridhar says:

    hi, i m seuli…..my 71 yrs old mother is suffering from lewy body dementia (DLB) for last 4 yrs. could anybody throw some light about caregiving organisations situated either in kolkata or mumbai?

  6. Anjali says:

    Hi , I am looking for caregiving organisation in Ahmedabad? As my mum in law has dementia.

    • Please check available resources across India and in various cities on my Dementia Care Notes website at http://dementia-care-notes.in While there is nothing specific listed for dementia in Ahmedabad, you will find several tips on how to locate relevant resources in your city, as well as information on resources in nearby cities. You will also find discussions on how to find and use trained attendants on this page: http://dementia-care-notes.in/caregivers/toolkit/using-trained-attendants-for-dementia-home-care/ and plenty of caregiving discussions (all relevant for India) in the pages of the section: http://dementia-care-notes.in/caregivers/

      In case you find some useful resources in Ahmedabad, please do share the information so that other families may also benefit.

      Best of luck!

    • Amitabh Verma says:

      Dear Anjali Ji

      Could you find any caregiving organisation in Ahmedabad for Dementia Patients. Even my mother who is 87 years old is suffering from partial Dementia. earlier it was full fledged dementia but with treatment she improved a lot. But even now she get Dementia strokes sometimes. Being 87 year old lady she needs a female attendant with her who can be of some assitance when in need . She is about to move to Ahmedabad to stay with me for some time.
      If you come accross such an organisation which provides care giving attendants, kindly share with me.

      Regards
      Amitabh

      • Dear Amitabh and Anjali

        I contacted some ex-caregivers from Ahmedabad to see if I could get any relevant information, but they are unaware of any organization that supplies trained attendants. They all recommend trying to locate a nursing bureau, selecting an attendant who seems reliable and competent and then training this attendant the way you need. As I mentioned earlier, the topic of trained attendant is discussed at length on my website page, and the page includes tips on how to locate attendants in this section: http://dementia-care-notes.in/caregivers/toolkit/using-trained-attendants-for-dementia-home-care/#who . The page also discusses ways to train attendants and to monitor their work and so on.

        I hope you are able to find a satisfactory solution. In case you find any agency that does supply trained attendants, please do share that information here so that other caregivers may also benefit.

        Regards,
        Swapna

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