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Commentary: Living with dementia, anguish and guilt plague families caring for loved ones
Families often learn to adapt to new physical needs, but are ill-equipped to deal with the emotional resolve the condition demands, says Melissa Chan, Head of Community and Outreach at Homage, a health-tech social enterprise in Singapore.
An elderly woman is being helped while walking on the road. (Photo: TODAY)
SINGAPORE: Earlier this year, our team received a distress call from a client Aysha*.
Her 70-year old mother, Madam Wahidah*, had refused to offer daily afternoon Salah (Islamic prayers) unless she had taken a shower.
Aysha had already given her a shower and reminded her so, but Madam Wahidah did not remember and was unconvinced.
Madam Wahidah, who never misses her daily prayers, grew agitated. In a moment of anger, she locked herself inside her bedroom.
After hours of persuasion, apologies and patience, Aysha finally convinced her mother to unlock the door.
For the rest of the week, this agonising episode repeated with Aysha finally engaging us for professional assistance, since it was compromising her ability to get to work.
The care professional was able to convince Madam Wahidah to open up and freshen herself. She also discovered the root of Madam Wahidah’s temperamental episodes.
Madam Wahidah’s memory was fading. This acknowledgement was devastating to her. Her repeated insistence was her way of convincing herself that her memory was intact.
But her daughter Aysha’s difficulty in understanding her mother’s mental anguish, due to the progression of dementia, and the increased dependence on others, gave her greater grief.
DEMENTIA’S PSYCHOLOGICAL TOLL
Madam Wahidah displayed the earliest signs of dementia - forgetfulness and occasionally repeated behaviour.
As dementia progresses, changes in mood, behaviour and personality become more common. Feelings of withdrawal, communication issues and impaired social behaviour can arise. Persons with dementia may even forget the names of their loved ones and their personal attributes.
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They begin to lose a sense of self as their memory and hold on reality fades.
Those living with dementia find their confidence and emotions challenged, and can sometimes lash out because of anger and frustration.
The Alzheimer’s Disease Association in Singapore (ADA) defines dementia as “an illness which affects the brain, causing the brain cells to die at a faster rate than normal - leading to a decline in one’s mental abilities, failing memory, deterioration of intellectual function and personality changes”.
But the challenge with dementia is also the lack of understanding of its psychological impact on families coming to terms with this disease.
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I have observed first-hand the severe emotional toll dementia exacts on family members as the condition progresses, leading to caregiver burnout and familial tensions.
Families often learn to adapt to new physical needs, but do not grasp and remain ill-equipped to deal with the emotional resolve the condition demands.
ACKNOWLEDGING EMOTIONAL CHALLENGES
Acknowledging, accepting and addressing the emotional challenges of this condition faced by persons with dementia and loved ones caring for them, is a critical part of effectively dealing with dementia that frequently goes under the radar.
Families must first acknowledge the physical and emotional hurdles that this condition imposes on a patient and themselves.
Our research drawn from hours of care delivered by Homage across Singapore shows that in the early to middle stages of the condition, individuals might display changes in behaviour.Â
In the earlier stages, this could include a level of obsessive-compulsive behaviour since routine and repetition are reassuring and can prevent mistakes.
As the condition progresses into the middle stages, individuals might shout, scold those around or even get physically aggressive, because they cannot vocalise their feelings and assert themselves.
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Such actions should prompt families to get an early diagnosis done, and look out for signs of memory lapses or withdrawal from social interactions.
More importantly, caregivers should develop an acute sense of the routines, habits and relationships that help their loved one build confidence and a sense of worth.
For most, it’s the ability to carry out daily living activities we take for granted like grooming, preparing a meal, driving, and socialising, that give them a sense of independence but may require additional support with dementia.
When they begin to experience difficulty in carrying out such tasks, they may feel irritated, confused and in some cases, engage in self-harm.
ACCEPTING AND OWNING THE JOURNEY
Accepting the emotional rollercoaster that accompanies dementia is the second step to overcoming the disease.
Three in four living with dementia feel rejected and lonely, according to a survey of 5,600 people done by ADA and Singapore Management University. More than half feel less competent because of their condition.
Nearly 30 per cent also expressed feeling embarrassed in public while looking after their loved one.
These figures are alarming reminders of the deep-seated stigma our society continues to have against those with personal challenges, making it difficult to seek help in time. “Feeling awkward” to be seen with a person with dementia, is directly linked to shame, guilt and even depression.
The longer one harbours these feelings, the more difficult it becomes for the person with dementia and their caregivers to manage the condition. Acceptance of the situation allows families to finding better avenues of care and undertake pivotal changes in one’s lifestyle.
With Singapore’s life expectancy reaching nearly 85 years, many youths around us are or will be caregivers in their lifetimes. So why the shame?
The journey is demanding but can be undertaken with clarity and confidence along with the right support and attitude.
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ADDRESSING CAREGIVING SUPPORT
Singapore’s ageing population, smaller families and eventual increase in our dependency ratio will mean more cases of caregiver burnout.
An ageing population also means a higher incidence of dementia - in 2012, about 28,000 people in Singapore aged 60 and older had dementia. The number is expected to soar to 80,000 by 2030.
At the same time, the country is seeing a steadily declining old-age support ratio, from 7.4 in 2010 to 4.5 in 2019.
And in our fast-paced society, heavier professional and personal responsibilities mean less time for caregiving and meeting one’s emotional needs.
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Most of those we’ve seen requesting for help are young caregivers. Almost half are aged 44 and below, with 29 per cent aged between 25 to 34 years.
To help our seniors age confidently, we need a stronger respite care support system.
Trained, experienced and motivated caregivers can play a key role by helping, assessing and recognising the needs of seniors, spot symptoms of the onset of dementia, and engage them and their families in customising a care plan based on their unique needs.
The care recipient builds self-confidence through meaningful engagements with others. Loved ones, on the other hand, gain better insight into their collective needs, and get time to refuel.
I often recall the years when my father was living with dementia while my mother attended to him. The physical stress of taking care of his needs created enormous emotional anguish.
His behaviour changed as the condition progressed. I often worried he would forget me too. My mother, siblings and I did the best at that time, but couldn’t bridge the distance between us and him that dementia brought.
Now I realise how a professional caregiver’s support for a few hours each week would have helped.
HOLISTIC CARE
With greater awareness, government efforts including the Ministry of Health’s Home Caregiving Grant and caregiver programmes under the National Council for Social Service have mushroomed, but more is needed to improve our understanding of dementia and galvanise efforts on the part of the medical, civic, and caregiving community.
As Singapore gives greater attention to the needs of caregivers, we must also strike a better balance in allocating resources between the physical aspects of care and mental wellbeing for the entire family unit when caring for a loved one with dementia.
Like Madam Wahidah and Aysha, many families may not have the tools to handle the challenges associated with dementia.
We all can play a part in improving the quality of life for people with dementia and their families, by recognising dementia not just as a physical condition, but a social challenge that can be managed better with stronger support mechanisms and holistic care.
* Names used are pseudonyms
Melissa Chan is Head of Community and Outreach at Homage. She is also the Founder of Project We Forgot, and a Steering Group Member of the World Young Leaders in Dementia Network, driving the development of innovative dementia solutions across disciplines and borders in Asia Pacific.
