Covid-19: Vaccinating people living with dementia: Stop making the incredibly difficult even harder — Sharifah Tahir

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JUNE 11 — Uncle Pak Chee, 73, rode his bicycle to a vaccination centre (PPV) in Ipoh and received a Covid-19 vaccination. No prior registration on the MySejahtera app. He had no prior appointment. Just his curiosity and courage to ask questions.

Congratulations to the staff at the vaccination centre for compassion and thinking outside the box to make it easy for a high-risk individual to be protected.

This story is a stark contrast to the bad experience at a private hospital which denied vaccination to my mother when the hospital extended an offer in the first place.

My 86-year-old mother has Alzheimer’s, the most common form of dementia that affects mainly older adults, and often has underlying health conditions.

She is in the advanced stage of the disease and naturally, along with co-morbidities, is highly susceptible to Covid-19 infection. Given her condition, she is twice as likely to get infected compared to her peers without dementia.

To complicate matters, when infected and hospitalised, dementia patients are prone to becoming delirious in unfamiliar settings thus complicating the management of their health and overall wellbeing.

A senior citizen receives their Pfizer-BioNTech Covid-19 vaccine during the National Covid-19 Immunisation Programme at Dewan Kompleks Sukan Pandamaran in Klang May 7, 2021. — Picture by Yusof Mat Isa
A senior citizen receives their Pfizer-BioNTech Covid-19 vaccine during the National Covid-19 Immunisation Programme at Dewan Kompleks Sukan Pandamaran in Klang May 7, 2021. — Picture by Yusof Mat Isa

Hence it was disheartening that the private hospital failed to vaccinate my mother when she was present at the hospital on May 27 as per their confirmation with only a day’s notice.

Apparently, this was because the appointment details were not on the MySejahtera app. So 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 for the following day even without the details on the MySejahtera app, the very reason they gave for not honouring their initial offer, which appeared on the MySejahtera app a day after the appointed date.

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, who was put at risk and endured hardship to travel to the hospital and needed a week to recover from the exhaustion of the trip and the trauma of seeing people in masks.

To the private hospital, I share 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 like 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, may set her back a few notches down the dementia progression trajectory and affect her quality of life negatively.

To be sure, I neither feel entitled nor am I trying to be difficult. People living with dementia and those who are affected by it are already living a very difficult life. But in Malaysia, the Covid-19 vaccination processes and inconsistencies in implementing them, have made the incredibly difficult even harder. So please, stop making what should be a simple process difficult.

Globally, Covid-19 has forced millions in a similar situation into isolation. Being denied access to social interactions, regular support and services, and disruption to routines has accelerated the decline in overall wellbeing, and in many cases, death.

My mother’s condition is bound to deteriorate because dementia is progressive and terminal. Therefore, the sooner she and her peers get vaccinated, the greater their chances of some resemblance to pre-Covid normalcy and the better their chances for a good quality of life.

It is commendable that older adults in residential care/nursing homes are slowly getting vaccinated in place, 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 to the authorities 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 independent of age and other risk factors for Covid-19, as well as their primary care partners who are the frontliners for their loved ones, plus the indirect protection that vaccination offers for the former.

2. Ensure advance appointment notice to allow care partners to make the logistical and mental preparations.

3. Assign morning appointments with flexible hours only to avoid sundowning symptoms, where the individual experiences enhanced confusion, anxiety, aggression, and difficulty understanding/following directions, common during early evening.

4. Urgently allow organisations like the Persatuan Mobiliti Selangor and KL that offer essential mobility van services to operate during the MCO as those with mobility issues depend on them to get to the vaccination centres.

5. Establish a calm space at every vaccination centre, and use it as the waiting lounge and vaccination station for people with dementia. Crowds, noise, and cramped spaces are triggers for challenging situations.

6. Allow care partners to accompany the person with dementia all the way through the vaccination process as people with dementia need reassurances from their care partners especially when they are in an unfamiliar environment and/or activities.

7. Include “dementia” and “mobility challenged” in the registration form to allow identification and execution of the above suggestions.

* Sharifah Tahir is her own person, a daughter, a faith-inspired dementia care partner, a dementia expert by experience, and an invisible second patient who is living life to the fullest despite dementia.

** This is the personal opinion of the writer or organisation and does not necessarily represent the views of Malay Mail.

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