UNCLE Pak Chee, 73, rode his bicycle to a Covid-19 vaccination centre (PPV) in Ipoh and got his jab. He had not registered via MySejahtera and therefore did not have an appointment.
Congratulations to the staff at the centre for their compassion in making it possible for a high-risk individual to be vaccinated.
This is in stark contrast to my 86-year-old mother’s experience at a specialist hospital in Selangor. She is in an advanced stage of Alzheimer’s disease, which, along with comorbidities, makes her twice as likely to get infected with Covid-19 compared to her peers without dementia.
To complicate matters, when infected and hospitalised, dementia patients are prone to becoming delirious in unfamiliar settings. Hence, it was disheartening that the hospital did not vaccinate her on May 27 as per the confirmation date it gave with only a day’s notice.
Apparently, this was because the appointment details were not on my MySejahtera app. If that was the case, then why call and give my mother an appointment?
Soon after the fiasco, the hospital called again to offer vaccination for both my mother and me on the following day even though the details were not on the MySejahtera app. No explanation was given nor did I receive any response to my email to the hospital’s medical director.
Such disrespect for an older adult who has been a patient of the hospital since 2014 is disheartening.
I wish to share with this hospital the wise advice of Datuk Dr Christopher Lee, our own world renowned infectious disease specialist, who told junior doctors at the Sg Buloh hospital to “treat patients like you would want others to treat your parents”.
When there is so much loss with dementia, which I witness on a daily basis, every good moment, day and experience matters. A single trigger, especially a major one, affects her quality of life negatively.
To be sure, I neither feel entitled nor am I being difficult. People living with dementia and those who are affected by it are already living a very difficult life.
Globally, the pandemic has forced millions in a similar situation into isolation. Being denied access to social interactions and services, and disruption to their routine have accelerated the decline in their overall well-being and, in many cases, led to death.
My mother’s condition is bound to deteriorate because dementia is progressive and terminal. Therefore, the sooner she and others like her get vaccinated, the greater their chances of living well.
It is commendable that older adults in residential care/nursing homes are slowly getting vaccinated on site, and that those living with disabilities and who are immobile may soon enjoy similar arrangements or via drive-through options.
Nevertheless, here are some suggestions for the authorities to consider to make things easier for people with dementia who do not fall into these categories and would have to go to a vaccination centre.
1. Prioritise vaccination for all people living with dementia regardless of age and other risk factors for Covid-19, and their primary caregivers who are the frontliners for their loved ones. Vaccination of caregivers indirectly protects those they are looking after.
2. Ensure appointments are given in advance to allow caregivers to make the logistical and mental preparations.
3. Assign morning appointments with flexible hours to prevent sundowning behaviours, where the individual experiences enhanced confusion, anxiety, aggression and difficulty understanding/following directions. This is common in early evening.
4. Allow organisations like Persatuan Mobility Selangor Dan Kuala Lumpur to operate during the MCO to help those with mobility issues to get to vaccination centres.
5. Establish a calm space at vaccination centres for people with dementia. Crowds, noise and cramped spaces are triggers for challenging situations.
6. Allow caregivers to accompany the person with dementia all the way through the vaccination process.
7. Include “dementia” and “mobility challenged” in the registration form to allow identification and execution of the above suggestions.