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 extended 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.  Take the survey here: Trained attendants for dementia home care

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.

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 survey is still open and can be taken here)

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 suspect more responses may be on the way. I will present the analysis of the remaining responses later, after the responses trickle down to zero again–or this post will never get done.  

For this first batch of 17 trickle-in-one-by-one 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.

Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either.

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.

shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.

learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.

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: