In the year 2020, Malaysia became an aging society. One of the pressing issues associated with an aging society is the increasing number of dementia patients. According to the Alzheimer Disease Foundation Malaysia, the population of persons living with dementia will leap by 312 percent by 2050. Are we ready for this?
In the field of mental health, how counsellors can play a role in this issue has yet to be unfolded. As IMU is a healthcare-centred institution, preparing our Master of Counselling students to engage with mild dementia elderly patients is not only helpful in sensitising our students on how to interact with elderly patients but also in understanding the stress of caregivers.
In the IMU Master of Counselling programme, we have undertaken a project entitled – Humanising Deterioration of Cognitive Functioning. In this platform, students will learn ways to interact with elderly mild dementia patients in a dementia care community. They were guided by the person in charge (PIC) and the centre’s caregivers at the initial stage of engagement.
Ten students were volunteers in this project. At the completion of the project, the students shared touching reflections on how they were intrigued and influenced by being involved in this project. In the midst of the well-written reflective reports, although I wish all the reflective reports could be shared on this platform, one reflective report, as presented below, highlights important questions on care. Due to confidentiality, the names were anonymized.
Engaging with Dementia Patients
As I reflect on my involvement in an outreach engagement with mild to moderate dementia patients, I’m deeply moved by the privilege that has been given to me. The moments spent with them had left me lost for words. It was truly a profound honour to connect and engage with them.
I found that two main themes still stir strongly within me. First of all, the awareness sparked by the PIC in the Care Centre on dementia has stirred a desire in me to illuminate this illness for everyone’s understanding and support—be it family, friends, or anyone who has dementia.
It’s my first time being educated about dementia illness and understanding the patients’ needs has brought a profound change within me. In the past, my experience with dementia was limited, leaving me uncertain and perhaps even ignorant about how to support these individuals. I found through the experience here, learning the simplest of things were crucial.
I remember vividly one Friday where we accompanied the patients for a walk outside for some fresh air and sunshine; I held on to one of the patient’s hand (hand-in-hand) and I was walking happily with her as she showed her anticipation for this walk. Smiles were bright and wide across our faces. Quickly, we were then taught to hold them with one hand on their arm, another around their waist. This was to ensure their safety by preventing any falls.
It struck me – why didn’t it occur to me? I found as much attention and care that I’m trying to provide the patients, being educated on proper care truly is crucial to ensure the patients get the best care possible. At the same time, to hold space in my heart to learn was such a key aspect. I wasn’t just here to engage with them, I was here also to learn from the patients and to learn how to support them.
The next theme, which to me is the most impactful reflection. Thoughts that haunts me during every visit – Is what I’m doing really helping the patients here?
Despite our good intentions, I ponder if my actions genuinely enhance their lives, making a positive impact. Every day I was there, I observe each patient reacting differently to the activities.
AC dismisses activities, usually saying things like “I don’t want, you do it.”; prompting me and the caretaker to find alternative approaches to gain her interest. I usually give her the autonomy to decline, would then sit with her and do certain activities in hope to catch her attention, which ultimately make her time more enjoyable at the care centre.
Ah S participates whenever we ask of her, yet I sense an underlying fear in her compliance. It seems that she is not familiar with the realm of autonomy. I often wonder if that’s true in her life, which saddens me. It usually results in me trying to provide her with more options, and checking with her if she really wants to do certain activities.
Ah Y avoids joining activities due to her physical pain and discomfort. It’s often a challenge to engage her in conversations and activities due to this reason. However, once I helped her to the washroom and stood by as she poo, which surprisingly encouraged her to open up and chat more with me afterwards. Just reflecting on these few patients, I truly believe there is no one-size-fit all method to care for people. Yet what are the ways to customize our care for each unique individuals? Are we equipped to find these ways for each of them?
Despite my efforts to employ Person-Centered Care, I’m left pondering if I’m genuinely contributing to their life. As I scrutinize this, I’m aware of my intention to serve and assist, yet I constantly question whether it aligns with the patients’ needs and even, their wants. The Centre’s Person-Centered Care approach resonates deeply with me.
However amidst our daily planned activities, I wonder, do we truly listen to their wishes if the patients decline? Do we dislike or even judge if they refuse to work on the activities planned for them? How much autonomy is given or should be given? Do they truly have the autonomy we claim to give them?Is my presence with them, truly enhancing their lives, leaving a positive footprint?
Written by Dr Teoh Gaik Kin and Chin Yong Jun