Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (Trained Attendants and Respite Care for dementia: Observations from India); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run 🙂

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

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Trained attendants and respite care for dementia: Observations from India

I keep getting queries because of my site Dementia Care Notes, and the most frequently asked questions by my site visitors are related to getting trained attendants for dementia home care, or getting information on old age homes where dementia patients can be admitted.

My website already contains information on these, but I think people want to hope, and when they are desperate, they want a personal and direct answer. Much of my correspondence time goes in personalized replies to such queries, but I thought I’d put together a sort of summary answer here, anyway.

First, old age homes for dementia patients.

statistics for dementia facilities in India

As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients. I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed.

Below are some observations I have to add on this topic–these are, of course, my observations, not an authoritative report, but they are based on multiple data points, and I welcome comments that may improve this understanding.

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All in a day: what care for a bedridden mother involves

My mother’s attendant (an excellent, competent and empathetic worker) is off to her village for a few weeks, and hubby and I are handling my mother’s care 24×7. My misadventures with the use of other trained attendants (and substitutes) is already well-documented (read this blog entry: Trained attendants for dementia home care: sharing experiences), and as ever, this time too, we’ve decided to handle the care ourselves rather than run around to agencies, pleading for another misadjusted, negligent, untrained, unhygienic attendant for the stop-gap arrangement.

In a post I made just a few weeks ago, I mentioned that late-stage care is very different from care of early and mid-stage dementia patients. I also mentioned what care involved, but didn’t quite describe the impact on the persons giving the care. But today, with my husband off for work for some days, and as I try to mentally and physically adjust to handling the care solo, the nitty-gritty of care is all I can think of, so that’s what this post will be about.

A few years ago, when my mother was in mid-stage dementia, my main challenge was handling her confusion, disoriented, rages, and despondence. I also had to prevent her from hurting herself, which often needed dashing to hold her when she would try to walk without support (because she had forgotten about her balance problem). I needed to help her bathe and eat, and though she sometimes resisted or argued, she cooperated at other times. She wanted to remain clean and well-fed; the only problem was, she had forgotten how to achieve all that. It was tricky to support her while walking, but I learnt techniques that were not too tiring. We managed, she and I, with the help of grab bars, stability exercises, and sheer luck.

My emotional connection with my mother during all this was sometimes positive, sometimes not so positive, but at no time did I forget that she was “there.”

Now that my mother is bedridden, the required caregiving is heavily physical. Care starts at 2:00 am, when her diaper is checked. If it hasn’t leaked, she just has to be turned, an activity that can be done using just a night light. If the diaper has leaked, that means removing the soiled diaper, removing the soiled underpad, clothes, sheets, cleaning and drying and powdering her, putting fresh sheets, clothes, diaper, underpad, all of which requires more strenuous and repeated turning this way and that, under the glare of a light, waking her up. Manipulating a diaper out and in is tricky because she locks her knees tight and it takes quite some energy to prise them open sufficiently to thread through the diaper flap. Keeping her steady enough to Velcro the diaper needs a lot of holding her straight, too. Often, she resists and glares. Or she lies there, lump-like, passive, unwilling. She was asleep, remember? This is intrusion.

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Been working on dementia care site

I’ve not blogged for a while, mainly as I decided to put in a burst of work on my site, based on the surveys I did earlier. The March survey had shown trained attendants as a major concern area, and I tackled this first, gathering information from multiple sources. I was looking for areas of concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog entry).

One upshoot of all that energy is that the Dementia Care Notes website now includes a detailed page on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here: Using Trained Attendants for Dementia Home Care The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care (PDF file).

I’ve also added other pages on some other important topics, like Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning and Long-Distance Caregiving for Dementia Patients in India

As I worked on these pages, I found myself coming up with a lot of ideas that merited blog entries. My experiences, my interactions with other caregivers, my realizations (during social gatherings and even medical trips) of how people outside my immediate circles seem as unaware of dementia now as they were three years ago. My comments on movies that depict dementia. Other stuff like that. I’ve jotted them down. I am hoping to make more frequent blog entries now, maybe even once a week, but I’m a bit wary of committing to that.

Time, now, for a break for a few days and then I hope to fall in a regular cycle of blogging…Let’s see…

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Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

Read the full post here

Where dementia caregivers in India need help

Because time and energy are limited, because there is so much that can be done, because I need to prioritize (or risk going crazy), I decided to use a simple, single question survey to gather data from dementia caregivers in India/ people involved with them. I put up the survey in the second week of February.

I am grateful to every caregiver/ friend of care giver who took time to share their thoughts or forward the link/ e-mail to someone else who may have been interested.

In this post I am analysing the first batch of responses received: the 17 responses I received up to March 14, 2011.

First, about the questionnaire (given below). My simple, single question survey collected no personal data, but also did not allow a person to respond twice. Respondents could choose as many options as they wanted. I expected them to tick any options they considered helpful, and if someone ticked all options, it would be because that person genuinely felt all the choices offered were helpful.

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I’m doing this post to capture the insights so far, and if any additional responses I get later provide any additional insight, I will add another post later.  

So far, for this first batch of 17 responses, the counts fell in two clear categories.

Most respondents chose the following options:

  • Availability of trained attendant (14)
  • Training programs for caregiving skills (12)
  • Home nursing services (12)

And fewer chose these other three options:

  • Support group meetings (6)
  • Caregiving books/ videos (6)
  • Day care/ respite care (7)

In the “others”, I received the following three comments:

  • And more information available in public which helps you understand that dementia is an illness not something that you need to hide away!
  • Professionally Trained Nurses who do not take the other inmates of the house for a ride.
  • knowledge of potential volunteers for caregiving

So, folks, that is the raw data: interpret it as you will. Below is my impression.
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The turning point, and becoming proactive

Thanks to Internet,  I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her after our move. A one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.
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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:
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