SINGAPORE: I first gained an insight into the crucial role the human spirit plays in a person’s well-being when I first met a patient, Mdm C. Then, I had only worked for less than a year as a doctor at Hua Mei mobile clinic, a team-managed home-based primary care programme by Tsao Foundation. The clinic supports the well-being of home-bound elders and their family caregivers.
Mdm C was in her late eighties. She had multiple chronic medical conditions, including dementia resulting from stroke, and was bed- and chair-bound for the most part. Her daughter-in-law was her main caregiver.
Mdm C was easily agitated and constantly asked to be moved about. She would request to be moved from the bed to the chair, only to demand a few minutes later to be brought back to the bed. The cycle repeated itself day and night. There were no indicators of pain, other physical discomfort or acute illness. Her daughter-in-law could not understand why she had become so attention-seeking in recent years; Mdm C had been reduced to a pale shadow of the kind and understanding woman the family knew her to be.
A patient having his blood pressure checked at Tsao Foundation’s Community for a Successful Ageing clinic in Whampoa. (Photo: TODAY)
Raised in Penang, Mdm C was an adopted child. She used to lament that her sister was more beautiful and deeply loved by her parents. Her mother would frequently compare them. She seemed to have an unhappy childhood. Could it be that her past memories were taking a bigger toll on her, now that her physical and cognitive faculties were disabled?
HOW DO YOU HEAL A BROKEN SPIRIT?
Over the years, I have seen many elderly patients with similar life stories. They had been mild-mannered and kind in their younger days, but became restless and easily agitated, resisting care and accusing people around them without reason, after they develop dementia. As a doctor whose prime responsibility is enhance the well-being pf patients, I cannot help but wonder how to heal their broken spirit.
On the other hand, there are other stories that stand in stark contrast.
Another patient I see, Mdm L lives with her daughter and a foreign domestic helper. I first visited her after she was discharged from the hospital following a prolonged stay in the Intensive Care Unit. While she was in the hospital, the family was briefed and emotionally prepared themselves for the worst – Mdm L had suffered a massive stroke caused by internal bleeding in the brain.
With much love and great attention to the smallest details paid to the care given to Mdm C, the family and the clinic team managed to wean her off a feeding tube and urine catheter. Over the years, with careful management of her hypertension and nutrition, supervised nursing care at home, as well as expert rehabilitation care from a visiting physiotherapist, Mdm L regained her abilities to walk, with the help of a walking frame, and converse coherently. She has improved so much that she no longer requires home-based primary care but only needs to see me regularly at our ambulatory clinic.
It has been over five years now. Mdm L has lost some linguistic abilities and developed cognitive impairment with the early onset of dementia, yet she is easily one of the happiest people I know.
Senior citizens in a mass qigong event at Singapore Botanic Gardens. (Photo: CNA)
These two cases have convinced me that happiness in old age is not entirely a function of physical and cognitive health.
PREPARING FOR OLD AGE IS A LIFE-LONG UNDERTAKING
If one’s way of coping with emotional pain in one’s youth was through acts of excitement, material possession, immersion in work or other forms of escapist distractions, there can be no eschewing mental distress when one becomes disabled, poor, isolated or cognitively impaired.
Even if one can exercise self-control and maintain composure in the face of adversity, will patience, faith and courage alone be sufficient to help us cope when we are physically frail or disabled, and succumb to dementia?
What does someone who is severely disabled and cognitively impaired think of each day? Do they ask, “why me?” or what the point of all this was for? Are they subject to random recollections of events and faces that bring about a flood of more extreme emotions?
CAN YOU TREAT DEMENTIA?
Two authors come to the mind when considering the issue of dementia and the best ways to go about managing the challenges of ageing.
Professor Tom Kitwood (1937 – 1998), a psycho-gerontologist widely regarded as the father of person-centred care in dementia, famously defined dementia as the manifestation of dementia behavior:
- Dementia behavior = P + B + H + NI + SP
The P represents personality; B represents a person’s biography; H is the state of their health; NI is the extent of their neurological impairment; and SP represents their social psychology.
While a person’s personality and life histories are largely fixed, caregivers such as family members and healthcare professionals who interact with a dementia patient can shape their pathology and social psychology, and reduce the manifestation of challenging behaviour by the patient. This is somewhat logical; if you think about it, the actions of dementia patients are really ways through which they express their inner emotions.
In my line of work, I have also learnt that interactions that regard the dementia patient as a person, and make connections based on respect, trust, love and compassion have always been helpful in treating dementia patients.
What does it take to age successfully? The answers might not be what you expect. (Photo: AFP)
A second author Viktor Frankl (1905 – 1997), a Holocaust survivor and famous psychiatrist, had a provocative definition of despair:
Where despair equals suffering (S) without meaning (M).
In this context, what does “meaning” entail? I believe that meaning is an individual’s ability to find a satisfactory answer to the question of why he or she does things. A man can suffer and work hard but still stay sane, so long as he believes his labour is purposeful. And each person has to find their own meaning.
I once asked a lady in her late eighties what she defined as successful ageing. “To do many new things and learn many things even as I grow older,” was her reply. This was a highly educated American lady.
Yet, many elderly Singaporeans are less expressive. I routinely ask my patients if they had things they wanted to do or needed help with.
“What else do I need? My children are grown up and filial. They are very kind. I have nothing to ask for. As long as I am not a burden I will be happy,” is a typical reply.
Sometimes, I get darker responses like “I hope I don’t have to live for too long.”
Elderly men chat at their void deck in Tiong Bahru. (Photo: CNA)
HEALTHCARE PROFESSIONALS MUST ESTABLISH A HUMAN CONNECTION WITH THEIR ELDERLY PATIENTS
After so many years, over the course of our work, my team and I have been inspired by many seniors. Our experience teaches us that if healthcare professionals make an effort to establish a human connection, healing and health will follow. If healthcare practitioners only target the physical aspects of health, we might not help our patients achieve better total well-being.
Why? Because it is the social and psychological impact of physical illnesses that weighs down the person’s spirit – and healing the spirit is what really matters in enhancing people’s well-being.
This is especially true for the elderly who face the relentless challenge of physiological decline. Every loss of function and painful incident reinforces existential loneliness and helplessness, unless the patient can somehow see meaning in all these.
Since 1948, the World health Organization recognised that health is not merely the absence of disease but the presence of complete physical, psychological and social well-being. If health is so comprehensively defined, then surely the providers of healthcare services must have the determination, focus and savvy to look into all bio-psychosocial aspects of our patients’ needs.
They should be sufficiently resourced and supported with a strong care infrastructure that can alleviate their patients’ suffering and meet their care needs.
With or without dementia, such needs are human and universal.
Really, once we get to know the person behind their frailty, there is no real difference between us.
Dr Ng Wai Chong is chief of Clinical Affairs at Tsao Foundation, a Singapore-based non-profit organization that works towards a positive transformation of the ageing experience through innovation in community-based eldercare, training and education, policy-relevant research, collaboration and advocacy.
