During the last year and a half, as the pandemic has raged and destroyed many lives, things have not manifested very differently for families with dementia. With dementia day care services suspended in most cities of India including our city- Hyderabad, and the ongoing challenges in finding trained homecare attendants, caregivers of People With Dementia (PWD) have had an extra helping of frustration and misery added to their already over-flowing plate of difficulties. One of my client-families, which I’ve been working closely with since the past 3-4 years, was facing something similar.
For almost two and a half years prior to the complete lockdown in Hyderabad in March 2020, I’d been visiting my client’s home twice a week for cognitive stimulation therapy sessions with him. Apart from this we would schedule counselling sessions with his wife and children to help them each individually deal with their caregiving journey. We also created a WhatsApp group- just the family members and me- where we’d discuss my observations after each therapy session, and explore new research and findings in the area together. This we found had worked as a good model (or at least one as good as we could hope for) to help them, as a family, cope with many of the curve balls that dementia threw at them each day. Over time, the family had also come to feel very strongly (in consensus with global research in the area) that my bi-weekly cognitive therapy visits had greatly helped my client. We had no way of knowing of course, if as research indicated these sessions had indeed slowed down the progression of my client’s condition, but there was no doubt that they benefitted him greatly in other ways- by keeping his moods fairly stable, and by acting as some of the most emotionally fulfilling and intellectually stimulating social encounters that he was having, hence helping with his overall morale and demeanour.
COGNITIVE STIMULATION THERAPY BEFORE THE PANDEMIC
My visits to my client would typically begin with a rapport-rebuilding chat about how he’d been feeling lately, any physical or emotional complaints that he may have been facing, and tapering into us establishing the objectives of my visit. It took my client almost a year after him repeatedly asking me each time why I was there and why we were doing the things that we were doing, to reach a place of intuitive trust in me and the purpose of my visits. As people who’ve had any experience with dementia will agree, this intuitive trust (since my client couldn’t quite recall the visits or interactions themselves, this trust must obviously stem from something deeper) plays a major part in guiding social interactions of PWDs.
After this initial chat whose main purpose was to validate my client’s feelings about what he was going through, we’d do some stair climbing, which happened to be my client’s favourite form of exercise in the past. Our other option had been yoga (since I also happen to be a professional yoga trainer), or walking on the streets below, both of which my client strongly objected to- the former because he’d never been into yoga his whole life, and ‘wasn’t about to start now’, and the latter because after two trials, we realised these walks made him very worked up because of the state of roads below his apartment- too many people and vehicles, too narrow, and so on. So we stuck with the tried and tested (as is always best with PWDs) stair climbing and it worked well for us, because my client was still fairly young- in his early 60’s- and able to quite swiftly and comfortably climb the 5 floors of his apartment building. As an added benefit, these exercise sessions culminated in a visit to my client’s terrace, where we spent a good 10-15 minutes walking around its perimeter talking about the different buildings that surrounded it, one of which was my client’s own prior clinic (he is a world-renowned micro-surgeon, whose clinic was just across the street from his home). This made for a bittersweet reminiscing exercise for him, which he nevertheless cherished each time.
We’d return to his home after about half an hour to start our cognitive exercises. These exercises had been put together by me over the months I had spent with him, keeping in mind his diagnosis- early-onset Alzheimer’s disease dementia- and all the challenges it brought with it. We did a variety of these together- some attention, orientation and verbal memory exercises on the laptop, some counting, spelling, naming and fluency worksheets and activities by hand, and additionally playing games like scrabble (his all-time favourite) and caroms (which he beat me hollow at, thanks to his impeccable hand-eye coordination). My client’s favourite activity by far, which we reserved for the last part of my visit, was karaoke singing. Over the first few months, we had built a repertoire of songs that he loved to sing. Each visit, inevitably when I suggested one of these songs, my client’s face would light up with a mixture of joy, excitement and nostalgia, and he’d comment on how he hasn’t sung this particular song in ages (when we may have just sung it in the previous session). This was truly ‘living in the moment’, I’d think to myself with a smile. Over the months and now years we’ve spent singing these songs, they’ve come to become my client’s lifeline and balm. Any time I knew he was having a hard day with either focusing on a task or a blue mood or even just a day when his insight about his condition was very high, making him feel miserable and downcast, I knew I could pull this rabbit out of my hat, and he’d feel better in some time.
THE EFFECT OF THE PANDEMIC
Once the pandemic hit in early 2020, Hyderabad went into lockdown, and it became impossible to have our much-cherished one-on-one sessions. When a month or so passed without my visits, my client’s wife started noticing a deterioration in his mood and general abilities. That’s when she came up with the idea of online cognitive stimulation therapy sessions.
As I began planning for my online sessions, I realized that most of the cognitive exercises we were doing earlier would not be possible online. Given the nature of my client’s condition, instructions had always needed to be short, clear and repeated again and again. Now additionally since I wasn’t next to him, I wouldn’t be able to provide the essential visual cues and gestures for him to understand my instructions. So earlier when I’d just be able to point at a laptop screen or page of a book and ask my client a question, I’d have to now orient him to look at a specific part of the screen verbally. A bigger problem was that, since I was not in the same room as my client, his orientation towards me would be fluctuating. Our conversations would go something like this-
Me: Dr. S can you tell me what this image is? (I screen-share an image)
Dr S: Which image?
Me: This one on the screen in front of you.
Dr S: You mean this one…?
And he’d turn the laptop around, as if I was sitting across him and he wanted to show me the image on the screen.
Me: Dr. S could you please turn the laptop back towards you so that you can see me? (I stop screen-sharing, so that he can see me)
Dr. S (peers into the screen from the side): But I can see you.
Me: Ok. Can you turn it to face you so that I can see you too?
Dr S: Ah.. ok.. ok.. I keep forgetting that you’re not here in this room
He slowly turns the laptop around but now it faces downwards, so I can only see his torso.
Me: Dr. S could you turn the screen up a bit, I’d like to look at your face too?
And so, it would go on. But we soon learnt the ropes, both my client and me. He would turn the screen less and less away (though this impulse hasn’t completely stopped even now after more than a year of online sessions), and over time I understood which were the key words, which helped him grasp the activity better.
Our activities transformed into ones that could easily be followed by verbal instructions- like writing the spelling of a word and making a sentence with the same word afterwards. I would just say a word and my client would have to write down the spelling. After he had written it down, I’d ask him to give me a sentence with the word. After the initial confusion of a few minutes in understanding the instructions, which I’d have to make simpler and simpler each time I repeated them, my client would have a spark of clarity and say ‘Oh… I just write down the spelling… why didn’t you say so earlier?!’ And he’d get down to work, with me repeating the word again and again till he had it on paper. It also proved a worthy exercise for me to learn to make my speech as concise as possible. Also, I realised that it helped if I included myself as a ‘doer’ rather than an ‘instructor’. So instead of saying ‘Dr S, please write down the spelling of this word’, I’d say, ‘Dr S, we need to write down the spelling of this word… they want us to make a sentence with this word.’ Needless to say, the unidentified ‘they’ helped me navigate through many a sticky conversation with my client in the months to come.
On most days, my client really enjoys this activity since it reminds him of times when he used to ace his inter-collegiate spelling bee competitions. Many a time the activity trails off into a reminiscing conversation about his days of competing ‘all over the world’ as he puts it, since details of these competitions themselves have now faded in his memory. But it really boosts his confidence, nevertheless. But then there have been those days when his levels of insight into his condition being high, this very activity would submerge him into a wave of gloom, reminding him about how he has lost his ability to recall the meanings of words that earlier he had on the tips of his fingers. Further challenges emerged as we continued; within a matter of seconds when the instruction was once again forgotten, and if my client had difficulty in grasping the word I gave him, he insisted that I spell the word out to him, not realising that the whole point of the exercise was for him to do it himself. At this point knowing that any explanation would turn into an argument, I would start spelling out the word, but a new challenge arose due to the transmission of sound over the Internet. Try as I might, my ‘s’ would sound like ‘f’. I tried saying one day, ‘S… Dr S… S- like the first letter of your name’ But as I should have foreseen, because he couldn’t remember his name that instant, this only made matters worse. Over the course of a few sessions, we navigated these difficulties one by one, and found a great resource in the online dictionary for both the spelling and meaning of the word chosen. Be it after my client had spent some time writing down his spelling of the word (which had become completely phonetical over the months), and gave up on trying to rack his brains for the meaning, or when he just wanted me to spell the word itself, I found I could just search for the word in the online dictionary, share my screen, and my client would spend the next few minutes being completely immersed in dissecting the word, its meaning, and its synonyms that were in front of him. Given his innate love for words, this activity till date remains one of his favourites.
One of the visual memory activities that also hit their mark in the same manner with him was drawing- I’d show the line drawing of an object on the screen and my client would have to copy it on paper. Initially I had tried very simple everyday objects like a post-box, a telephone, and such, wondering about my client’s abilities, but soon I found that he enjoyed more complex drawings, and especially of objects that were relevant to him- like musical instruments, a microscope, and antique cars. A unique challenge we faced for a few sessions in between, which still holds me in awe of my client’s ingenuity even in the face of his cognitive deterioration, was when in the middle of a drawing he flattened out the laptop screen, placed the paper on top of it and started tracing it out over the paper. Of course, this meant that I couldn’t see him, and would have to explain to him about how the laptop screen needed to be upright; further he had completely done away with the ‘visual memory’ aspect too! It nevertheless, made for a very interesting interlude, and for which I applauded my client about his quick thinking. This seems to have been forgotten now, because he doesn’t try this trick anymore.
Another activity, which has consistently worked over the months, has been a visuospatial activity of counting objects on the screen. I created a PPT with slides of categories of objects, like one with different kinds of fruits, another with different kinds of vehicles; and I would screen share this with my client going over one slide after another. I’d then ask him to count one of the objects on the sheet- ‘Dr S we need to count the apples on the page’. Just like with the other activities, the instruction would need repeating most often, but after a few repetitions, when he had understood, my client would quieten down and become focused on the task. A few minutes later, he would either give me a number, or he’d ask me to repeat the instruction. While initially, my client would be able to count visually, of late he’s been having to point to the objects to count them. But this activity still works like a charm and has him focused for long periods of time.
In this manner over the months, we’ve been able to come up with a variety of activities via the computer related to several areas of cognition. Of these, last but certainly not the least happen to be our singing sessions, which we have managed to continue online in rather a spirited fashion. I tried to continue the karaoke singing with lyrics shared on screen, but without me being there in person to give my client the facial and vocal cues he needs, he found it difficult to sing along. So, we devised other ways of singing; we sing along to songs on YouTube that I screen-share- the video of the songs provides the cues needed, and also acts as a great source of reminiscing for him; or we just sing the whole song by ourselves without any aid, also doing the instrumentals vocally, something that my client is very good at, and something that has us both often in splits as our version of the song becomes more and more animated. Another version he enjoys is if I give him a word and say we have been asked to sing a song using the word. And he’ll come up with some really choice songs from his repertoire of music, sometimes surprising me with one I’ve never heard before. Best of all is that we transgress languages, often going back and forth between the different languages that my client is fluent in, sometimes bringing back old cherished childhood memories of how and when he learnt these songs. Over time my client has been forgetting the lyrics of these songs more and more, but it’s amazing how the music remains intact in his memory, every single note and beat etched into his very being. I’ve realized that singing, no matter how it is done always proves to be real manna for his brain and his spirit.
As the pandemic continues, rearing its ugly head time and again just when we think things are back to normal, these online sessions have proved to be a real boon for my dementia-family and me as a team. I cannot begin to imagine how my client and his family would have fared this last year and a half if not for these brief but wholesome encounters during the week. I for one would have been worried sick not knowing what his condition was first-hand, and how his wife was carrying on caring for him, without being able to help in any way.
Given all our initial challenges, I’d say my client and me together have really settled into the online mode of doing cognitive stimulation therapy together. There’s no doubt that my instructions have improved by leaps and bounds, we spend more and more time on constructive activities rather than navigating through them, and regardless of his condition, my client seems to have honed the art of focusing on the task given, albeit on the laptop. I have no doubt that this intervention, complemented by the regular phone and video counselling sessions with the family members, and our thriving WhatsApp group, has helped reduce this dementia-family’s burden during the pandemic to some extent.
But what makes it most gratifying is that despite his deteriorating cognitive condition, one of my client’s persisting questions to his wife is about when our next therapy session will be. This pattern makes me quite certain that what really matters is not that he can’t get the instructions at the first go, or that he often doesn’t get most of the answers right, or even that his condition is most certainly deteriorating, but instead that he still has something to look forward to, something he values ‘doing’ with someone who he believes is an ally, and something that still makes a difference to his life. I’m ever grateful to technology that has helped us continue this kinship even in these most challenging times.
About the Author
Amulya Rajan is a dementia psychologist and consults at Kshetra Assisted Living and Dementia Care Facility, Hyderabad. As dementia care specialist, her work currently involves carrying out cognitive assessments and care interventions for persons with dementia, counselling of their family members, training of bedside attendants and staff, and acting as a liaison between neurologists and persons with dementia. Amulya has co-authored several research publications in the field of dementia and continues to be actively involved in dementia research. Amulya is also a design thinking education consultant and a personalized yoga trainer. Her work in these diverse fields over the last decade has been immersed in understanding human cognition, emotions and behaviour across lifespan, and in innovating novel and holistic ways of alleviating disturbances and facilitating harmony within the brain-body-mind-soul framework.