These are challenging times as authorities across the world continuously adjust their advice and systems to minimize the impact of COVID-19 on multiple fronts while data on this new virus keeps coming in. Multiple aspects of family life are impacted, and in addition to adjustments required, there is fear, uncertainty, conflicting information, and a general sense of lack of support. Families already in vulnerable situations (such as old age, illnesses, socioeconomic situations, family dynamics and constraints etc) have been hit harder.
In this current scenario, online and phone support have become far more sought after and relevant. This post is about how non-COVID online care resources are integrating material relevant to the COVID context, and also my own attempts to contribute to this area. It is not about information on COVID 19 or the restrictions as such, or even about the status of spread- these are available in well-publicized, reliable sites of various ministries.
Additional support is needed by caregivers due to COVID
Families face difficulties providing care for regular medical problems – after all, other health challenges have not vanished just because COVID has become a prominent healthcare challenge. Actually COVID-19 has added to existing care challenges because families have to continue the regular care and also handle challenges like the risk of COVID infection and lockdown (including unlock) requirements. Unfortunately, available systems and support have reduced – like closing down of day care centers, reduced availability of trained attendants, reduced coverage of home health services , additional precautions imposed at places providing services.
Availability of online information, support and services plays a very important role in times like this. Unfortunately, the situation has caught most support organizations unawares and while some have been able to transition part of their work online, others have not. Some have started a few online sessions for families, for persons with dementia, for support groups, etc. There are so many webinars (ranging from absolutely useless to quite useful) that it gets difficult to select one that is useful. Just because webinars are free doesn’t mean caregivers have the time to keep watching them all for a few pearls of wisdom.
Unfortunately, online resources may not have been updated for the COVID context
Alas, many organizations are not updating their online data to reflect their operational status. Friends report that the website and social media data on the phone numbers and timings of helplines are not reliable – the organizations may have changed their phone numbers and reduced timings due to COVID, but not corrected this in their online presence. This leads to people feeling even less supported when no one responds to their calls.
When lockdowns began, dementia day care centers across the world closed. In-person services were suspended. Some residential care homes also closed down, or reduced the number of residents they were serving, or stopped new admissions. They also imposed various precautionary measures about visitors to protect residents from infection and implemented their own procedures (SOPs). Many home health care services also changed the services they continued with.
As I maintain pages on city-wise resources in India, I decided to check the status of various such resources by visiting their websites. But none of the websites I visited mentioned that day care and in-person services were suspended. The websites of full time care facilities did not mention COVID or steps taken by them for it. Some website had added a pop-up window mentioning COVID and related measures, but the pages describing the services remained as they were before COVID.
It became clear that I could not assume websites of such entities are up-to-date. So, I updated my website resources pages to mention closure of day care centers and asked people to call up the centers to get updates about re-opening.
For a family looking for information on services, this lack of updates is very misleading. This is even more so in times when people expect better data online. Hopefully some of these entities have made their online data more up-to-date by now.
COVID-related information and suggestions are relevant for multiple aspects of care
There are many sites that give information on dementia and care, and most have a section now on COVID, which is useful. This is mostly as one or more additional new pages on COVID.
However, the detailed care pages on these sites are typically not updated for how care needs to change for the COVID situation.
The COVID situation is not something that will vanish in a week or month or so. The changes required will remain relevant for a long while, especially those related to vulnerable sections like persons with dementia. Take, for example, “communication.” Advice on how to communicate with a dementia person needs to factor in aspects like use of masks, and it is not enough to have that on a separate, general page on COVID. Edits for such changes are required on pages that discuss communication.
My attempts to keep my work relevant in the COVID context
My own response in terms of website updates for COVID required understanding the situation better, seeing how various organizations were handling it, and what the authorities advised. I first published Dementia Home Care, the COVID-19 infection risk, and Lockdown/ Unlock challenges in April 2020. I have since revised this page multiple times to ensure it remains in sync with the situation and the latest advice and shared practices. I also created a series of Hindi posts on “डिमेंशिया देखभाल और कोविड-19 (COVID-19)” for my Hindi site, with four parts: भाग 1: व्यक्ति को वायरस से बचाएं, भाग 2: देखभाल कैसे एडजस्ट करें, भाग 3: दवा खरीदना, टेस्ट करवाना, टेलीमेडिसिन से सलाह लेना, अस्पताल जाना and भाग 4: कारगर देखभाल और तनाव मुक्ति के लिए अन्य सुझाव, सहायता के लिए संसाधन, इत्यादि.
By May, I realized that it was not enough to have a separate set of pages on COVID, howsoever comprehensive and updated. The fundamentals of COVID are not going to change in a hurry. I needed to incorporate COVID aspects in the care-related pages to keep the material relevant. I also got feedback from caregivers on the problems they faced due to reduced services, closed day care centers, and so on.
I therefore began updating my website to ensure that, wherever relevant, the pages acknowledged the complexities added by the COVID 19 situation, and included relevant data and suggestions. Thing is, just about every caregiving aspect is affected, whether ways to help the person, improve quality of life, handle remote care, handling caregiver stress, etc.
So, for example, the page on communication now also discusses how masks add to the challenge of communication and what can be done. The page on home adjustments factors in (1) the crowding and intrusions that work-from-home can cause and (2) the confinement because of the advice that seniors avoid going out. The page on changed behaviour highlights the additional risk of challenges because of the restlessness and frustration now present due to the constraints.
The entire sweep resulted in edits to around forty pages on the Dementia Care Notes site.
We need a wider perspective, as problems faced by families are not compartmentalized
To cope with extraordinary challenges, we need to get a broader view and accept that we cannot always do the best. Compromises and adjustments are essential because every family, every caregiver faces multiple challenges, not just supporting someone with dementia.
A lot of COVID related advice for dementia focuses on how to make the quality of life better for the person with dementia. So, typically, a lot will be said on the importance of keeping the person engaged. But how will an already overwhelmed caregiver facing additional challenges and reduced support take on such work? Most families do not operate from the point of privilege such advice assumes. Repeatedly, feedback from families shows how interwoven all challenges are. Suggestions cannot assume dementia care is all that matters. To keep tips practical and usable, the aspect of balancing multiple fronts has to be integrated. This is something I try in the content I create- it’s not always possible, but I try.
Another area I’ve been thinking hard about is how support systems need to be multi-dimensional – even more so now with COVID.
In May, I got an opportunity to make an online presentation on Dementia Home Care During COVID 19 at APHRDI (May 27, 2020). As this was for a more general audience, I pondered over dementia as a priority in COVID times. After all, a family does not face problems due to dementia in a separate compartment compared to the problems they are facing due to fear/ anxiety around COVID, economic problems, overcrowding, family conflicts, etc. And health care workers also need to look at a family’s situation and challenges and possible solutions as a whole, not just dementia or some other specific medical condition. To support families coping with dementia, these health care workers need to understand dementia just as they need to understand general ageing challenges, mental health problems, domestic abuse, substance abuse, chronic conditions like diabetes, and also appreciate the socioeconomic situations of families. It is time to actively integrate dementia awareness and support mechanisms into existing healthcare frameworks rather than work in isolation. (View the presentation here)
Swapna writes... 
This is a useful and excellent share. Will definitely share it with people I know.