When families need attendants to help them care for dementia patients (India)

One common problem caregivers face in India is finding nursing attendants who will take care of the dementia patients. Such assistance is needed when the dementia patient is in the middle or later stage and cannot be left alone because the patient may need help with activities of daily living, or is otherwise prone to wandering, and the family members cannot do this kind of care giving full-time.

In India, people employ a untrained maid in the beginning for such help, but once the patient starts getting incontinent or otherwise difficult to handle, we usually get a nursing attendant from a home nursing agency.

The problem is, even ‘trained’  attendants are rarely trained to care for dementia patients. Most attendants have undergone a week or two of training, and while they know about first aid, home nursing and bed sores, they do not know about dementia. So, faced with a dementia patient’s difficult behavior, they take every frustration, every anger, as a personal insult. When the family members say this is a disease, they do not believe it. They get upset and this comes out as either agitation with the patient, or depression, and the situation escalates. Most stints by attendants are short-lived and end with sorrow and bitterness as the attendants cannot cope with the situation.

Based on my experience, and experience of other caregivers I have talked to, here are some suggestions for family members who need attendants to care for dementia patients:

Gather resources: Every city has some resources that can help: To get information on support groups, societies, nursing agencies that can help you understand caregiving better and know where to locate attendants, or equipment and supplies you need to caregive, you can:

  • Ask your GP/ specialist
  • Check up with the neurology department of any major hospital
  • Ask any other caregivers
  • Contact city chapters of all-India societies, such as Alzheimer’s and Related Disorders Society of India

Specifically, for nursing attendants, most cities have agencies that supply them, and information about the agencies is usually available at nursing homes and hospitals, in addition to what you may get from doctors, support groups, and other caregivers. Organizations like Red Cross may also be able to help you or direct you to those who can.

Actively seek help from resources who are knowledgeable about caregiving of dementia patients.

You can probably obtain:

  • Literature on the disease that helps you understand the caregiving impact better
  • Pamphlets you can provide a nursing attendant
  • Some organizations may be conducting short-module training for caregivers
  • Some organizations may have a helpline that any caregiver (or attendant) can use to understand how to handle a problematic situation (an agitated attendant can directly talk to a help-line if needed)
  • There may be counselors who are willing to explain things, and even visit patient homes to do so.

Do not hesitate to avail help of these.

Educate yourself on the disease, and tools and techniques to reduce behavior problems–such as patient agitation, and to diffuse/ resolve such agitation when it occurs. It is not enough to know that dementia is a disease and that the patient behaves in a certain way because of this–the caregiver/ attendant needs to know how to make caregiving smooth and stress-free.

If you have understood these techniques and have used them, any attendant who observes you feels more confident about handling the situation. When an attendant sees you handle the patient compassionately and firmly without taking any comments personally, it is easier to accept that the problems are purely because of the disease. When the caregiver gets upset, morose, or agitated at the patient’s agitation, any attendant also gets more unnerved.

Educating yourself in proper ways to handle agitation/ abuse by patients is extremely important and also tricky, because it means setting aside a natural instinct to react and protect one’s ego. There are, fortunately, many books and other resources that clearly explain how to do this.  I have resource pages for dementia websites and for books and DVDs and online videos if you want a starting point. If the number of links on these pages are overwhelming, start with: Alz.org’s site;, simple brochure (PDF file) or advice on specific difficult behavior or download a comprehensive caregiver manual  from National Institute of Aging as individual topics or a PDF file.  (These links are all for US based caregiving, but they provide a good starting point even for those of us outside the USA).

Train the attendant for dementia caregiving. For this, if possible, tap someone else who is an authority. Perhaps someone from your local chapter of ARDSI or a doctor or a counsellor can talk to the attendant for a short while and explain what dementia means. Let the attendant see other patients in a home or day-care center, so that the attendant understands that this is a disease. If a dementia specific caregiving note is available in the attendant’s language, give this to him/ her.

The intention of such training is that the attendant:

  • Understands and believes that dementia is an irreversible disease where the brain is physically damaged and hence cannot function
  • Understands and believes that a person who cannot remember is likely to be frustrated, suspicious, frightened, angry, accusing, and out-of-control
  • Knows  the tools to reduce agitation and handle it
  • Knows that emotional connection is still possible, and that the patient needs affection and respect
  • Knows that in case the patient gets agitated and accusing, the attendant will not be blamed for it because the relatives understand that the reason is the patient’s illness
  • Knows a number of fall-back measures to use if the patient is out of control (such as, emergency calls to family members, helplines, etc)

If you cannot get someone to help you train, prepare a short training note yourself. You can include pictures of damaged and normal brains to emphasize he physical aspect. In addition to general tips as above, also include tips specific to your patient (mention what agitates her more, etc.). This training note can be used by you every time the attendant changes 🙂

In any case, make sure that the attendant knows that you will not start blaming or accusing the attendant based on ill-founded complaints of the patient. Most defensiveness of the attendant will go away with this assurance.

Let the attendant see enough examples of correct caregiving at home. Let the attendant see you interact with the patient in a way that emphasizes what you expect of the attendant. Show the compassion and patience you want the attendant to use. Patients often manage to hide their confusion/ failing memory behind bluster and anger, so let the attendant see instances where it is obvious that the problem is genuine.

Well, that’s all I have for now.

These are my preliminary suggestions, and I would love any comments that will help me improve this list.

To share my own case, I used to have a lot of problems with attendants I got for my mother. They were convinced my mother was lying and being mean and troublesome. NO amount of explaining that my mother had ‘confusion’ helped. I explained to one such attendant that, even if my mother accuses her, the attendant should not argue, but explain her point of view to me later. But no, the attendant would yell back at my mother even as I signaled to her to keep quiet.

One day my mother got very agitated and started accusing the attendant of all sorts of things that were patently impossible. The attendant started arguing back very loudly. I tried to take her aside and tell her not to get so worried, because I knew my mother was confused, and the attendant yelled at me, Confusion wonfusion kucchh nahin, Maa jhoot bolti hai. (This is not confusion/ wonfusion. Mother is lying). She yelled it out again, looking at my mother. It took me hours calming my mother down; my mother wanted the attendant dismissed immediately.

That was when I realized how absolutely deep the attendant’s conviction was that my mother was being mean on purpose. It was also the turning point for me to realize that it was not enough to just explain to the attendant, I needed to tackle her ‘training’ systematically and in a way that convinced her and also gave her tools to handle the agitation. It took me a few weeks, but the very attendant who yelled so at my mother became a reasonably calm caregiver.

The final touch was when she saw me play games with my mother. Earlier, I had hesitated to play games with my mother, thinking that my mother will refuse (games are for children) or feel inadequate (because she could not play them well enough). But finally, when I brought home a few games, I was surprised at how glad she was for them, and how each successful game made her feel so good about herself (the ‘game’ was a set of seven colored plastic rings that were to be stacked, like a cone on a rod).  And playing can be fun, too–a blog entry on my play-time with my mother, and another entry.

Day after day, my mother would struggle with that game and another (a jigsaw of six pieces), every day making the same mistake, every day, frowning and then beaming when she managed to complete the game. It took me a lot of patience to not intervene or force the pace, and a lot of courage to not get dejected. The attendant, watching from a side, looked amused and impatient (and I had to tell her not to laugh) on the first day. But a few days later, I saw the attendant watching my mother very carefully, and I realized that she had finally understood how compromised my mother’s memory and ability to think were. Sometimes a single episode that hits home is enough to change anger and defensiveness in a caregiver to compassion and patience.

I went about the ‘training’ of my next attendant very carefully. I prepared a set of instructions (in slide format). Before the attendant met my mother, I took her to a dementia daycare where she saw other patients, doctors, and caregivers, and saw that the patients were being treated in a special way when they said strange or offending things (not like any old cranky person).

By the time the new attendant met my mother for the first time, she had a framework to place my mother’s illness in. I spent quite a bit of time assuring the attendant that all behavior problems she will encounter are ones I have myself faced, and I also repeated a number of tips on how to handle agitation. I made sure that for the first few days I demonstrated often enough how to handle my mother through a variety of her ‘difficult’ moods. The attendant has been able to handle agitation far better, and has not (so far) taken any episode/ accusation personally. Her calm manner has also given my mother a more stable and secure environment, and reduced the number and intensity of agitation episodes. I am hoping this modality will work as well with the next attendant 🙂

Ideally, we should have places that train attendants for dementia care–short course, long courses–giving them theory and practice, and then certificates of completion. Till that happens, we caregivers need to effectively use available attendants to care for our patients in ways that are good for the patient and good for the attendant, and I hope the above suggestions work.

Any comments/ suggestions?

Edited to add links to recent, relevant entries and resource pages:

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

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.

3 Responses to When families need attendants to help them care for dementia patients (India)

  1. lian says:

    hello Swapna, i am looking for assignment materials on dementia care in india. i am amazed at how well you brought out the issue of attendant care. it could have gone unnoticed . thank you!

  2. Hallo Swapna. Your article is a very thought provoking one. I too need a dementia trained attendant to take care of my aged father.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s