In these paired articles, a doctor and a caregiver reflect on their experiences jointly caring for a dementia patient
Doctors need to be on lookout for caregiver stress
Running through the clinic patient list as I hurried from the ward, I saw that Mr Lim was due for his clinic review. I made a mental note to check in with his son Eric about how things were going, as I recalled that Eric had got married since Mr Lim's last clinic review.
I first started seeing Mr Lim in my clinic two years ago when he was referred for agitation and restlessness by a physician from a community hospital, where he was undergoing rehabilitation after a stroke. Mr Lim's domestic helper had left as she was unable to manage his aggression towards her. Alarm bells were ringing in my mind as I read the referral letter - Mr Lim's family and caregivers were at high risk of experiencing caregiver stress, which, if not managed adequately, would result in poor healthcare outcomes.
A survey on informal caregiving commissioned by the Ministry of Community Development, Youth and Sports in 2011 showed that caregiver stress is related to both caregiver and care recipient factors.
It found that caregivers with more chronic diseases have higher caregiver stress, likely due to reduced physical ability to provide care to the recipients. Caregivers who are adult children of the care recipients also experience higher caregiver stress levels compared with spousal carers. This is in part due to the multiple commitments that these caregivers have, such as work duties and, for some, parental duties to their own children.
Care recipients who have depression, memory problems and disruptive behaviours also add to caregiver stress.
Despite the challenges faced, caregiving can be a positive experience. They feel satisfaction in knowing that their loved ones are well taken care of, enjoy a sense of giving back to someone who has cared for them as well as experience increased meaning and purpose in one's life.
Caregivers with positive self-esteem who have greater emotional support from family and friends experience less caregiver stress and enjoy more positive experiences in caregiving.
Many caregivers say that what helps most in reducing stress is a listening ear and empowerment, rather than unsolicited advice on how to provide care.
In my practice, I find that many caregivers do not recognise they are facing caregiver stress until it is too late. Early signs of caregiver stress include irritability, anxiety, poor concentration, loss of interest in activities and sleep problems.
Some carers have told me that they constantly ruminate about how different their loved ones have become, worry about what will happen to them and, inevitably, feel helpless about their situation.
The first step to management is recognition that they are experiencing caregiver stress. In our memory clinic, we ask caregivers with high stress levels to answer a questionnaire, focusing on the key contributing aspects of role strain, personal strain and worry about performance. This allows healthcare professionals to take a targeted approach in assisting them.
For example, we worked with Mr Lim's caregiver, his son Eric, to explore what might have triggered his dad's aggression and how to manage it.
Eric was able to maintain a calm disposition despite the challenges faced in caring for his father. He was conscientious in observing his dad's responses, and very much involved in caring for him. He and Sunik, the family's new domestic helper, could soon understand what Mr Lim was feeling from his facial expressions and gestures, truly demonstrating the concept of patient-centred care.
From Eric, I have learned much about a caregiver's journey and struggles faced. I am greatly encouraged by how Eric had normalised the situation he was in, scheduling his different responsibilities and integrating care for his dad into his daily routine. Eric could also continue with his life journey of setting up his own family alongside his role as his dad's caregiver. Adopting a teamwork approach, Eric actively partners Sunik in caring for his dad; he regularly steps in so that Sunik is able to get some rest. This is important in avoiding caregiver burnout for both of them.
American author Brian Tracy once said: "You cannot control what happens to you, but you can control your attitude towards what happens to you."
Eric is able to use his caregiving journey as an opportunity to make positive changes, taking up mindfulness practice and coaching others who may be facing similar challenges in caregiving.
He is a positive role model for caregivers, and an inspiration for us healthcare professionals to continuously partner with caregivers and patients in achieving meaningful healthcare outcomes.
Dr Lim Jun Pei is associate consultant at the Centre for Geriatric Medicine, Tan Tock Seng Hospital.
A version of this article appeared in the print edition of The Straits Times on October 13, 2017, with the headline 'Caregiver stress'. Print Edition | Subscribe
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