Caregivers Must Take Care, Too

Looking after a person with dementia can be challenging, but caregivers can prevent burnout if they cope well and have the support of family members.

Caregiving for the elderly with dementia is a role that is set to increase in demand. In its last study in 2005, the Dementia Singapore found that there were 22,000 seniors (aged 65 and above) with dementia. These numbers are set to increase to 53,000 in 2020 and 187,000 by 2050, said Associate Professor Lim Wee Shiong, Senior Consultant with the Department of Geriatric Medicine, Institute of Geriatrics and Active Ageing, Tan Tock Seng Hospital (TTSH).

In Singapore, a large part of the caregiving responsibility falls on adult children, followed by spouses and grandchildren. Some of these adult children may not necessarily provide direct care but they are the decision-makers. Many of these adult caregivers are also sandwiched between having to look after their parents with dementia and their own children.

The World Alzheimer’s Report by Alzheimer’s Disease International has estimated that global dementia care cost was US$604 billion (S$645b) in 2010 — of which 40 to 60 per cent went to informal care provided by family, relatives and friends.
“Elderly with dementia have higher care needs. As a result of memory loss, they lose their ability to perform higher tasks such as navigating their way around and handling money, as well as basic functions like feeding, bathing and toileting. “Some become depressed and may have paranoid delusions and hallucinations. These can be very stressful to caregivers,” says A/Prof Lim.

Stressing About Stress

stressing about stress

Caregiver stress refers to the self-appraisal or strain that comes from one’s role as a caregiver. A/Prof Lim explains that no two persons have the same experience, “One could be super stressed when looking after Mum, but another may feel that ‘yes it’s tough but it’s meaningful’ — as that is what they should do as someone’s child.”

There are three kinds of caregiver stress: role strain, personal strain and worry about performance. In the last category, stress comes from two sources: The people around the caregivers and the caregivers themselves. Stress from others happens often in more complex or larger family structures. Siblings who are not involved in the caregiving process or live overseas, as well as relatives, may pass comments such as “Mum is looking thinner. Why are you not looking after her properly?” says A/Prof Lim. Then there is stress that caregivers put on themselves. First, they get anxious about their parents’ new diagnosis, then they start to worry about how to take care of them and how to ensure that the condition does not progress.

This is salient among Asians because of our emphasis on filial piety. So whether caregivers are thrust into the role willingly or unwillingly, they put a lot of expectations on themselves. But wanting to do better can also be a good thing. Traditionally, mild dementia is viewed as a relatively burden-free stage of the disease.

But if caregivers do not take care of themselves, role and personal strain may set in and affect their ability to cope with caregiving tasks when dementia progresses. Role strain is stress that comes from the demands of being a caregiver, such as worrying about how to look after a parent with dementia, and whether available finances can cover treatment costs.
Personal strain is the direct impact on caregivers, such as having less time for themselves, not being able to sleep well, or feeling embarrassed when they bring their parents out. “Mild dementia is the best time for caregivers to equip themselves with the right skills and resources to look after the patient,” recommends A/Prof Lim.

Don’t Let It Deteriorate

don;t let it deteriorate

The burden of care goes up as the patient’s condition becomes more severe. This happens during moderate stage of dementia where there are increased care needs from the patient, and the accompanying role and personal strain of the caregiver increase. When caregivers can’t cope well with the tasks and don’t take care of themselves, stress may lead to burnout.

An obvious pre-burnout sign is when caregivers don’t find meaning in their caregiving task anymore. They may also start to display physical symptoms such as loss of appetite, insomnia and chronic fatigue. Some may even have the feeling of being detached from the world. When the caregiver eventually says, “I quit”, burnout occurs.

When that happens, the care of the patient will be compromised. The burnt-out caregiver may deposit the patient at a hospital’s Accident & Emergency department on the pretext of a medical emergency, and say they do not want to look after the elderly anymore. Many of these patients then end up in a nursing home.

Recharge For Resilience

recharge for resilience

There are ways to prevent burnout. A/Prof Lim uses the analogy of a mobile phone battery: “Charge your phone even when it is at three to four bars. Don’t wait till one bar — when it drops to that level, you are running very thin.” Caregivers must first acknowledge that they cannot cope with the stress and seek professional help, he advises. He cites the example of a 60 year-old caregiver who came to see him as a patient because she felt she was losing her memory. She only revealed the stress of looking after her 80-something year-old father when she saw the clinic’s psychologist. She was not suffering from dementia herself. It was stress from the caregiving role that had affected her memory. By affirming her as a caregiver and equipping her with the necessary coping skills, the clinic team helped her to better manage stress and improve her memory.

Caregivers should also inform other family members of their stress. Another case study A/Prof Lim brought up was of a stoic man who was looking after his wife with dementia. He seemed cheerful during consultations. Another family member alerted the doctor that the caregiver was not coping well. The clinic arranged for daycare help for his spouse, so that the man could have some time to rest and unwind.

More importantly, A/Prof Lim highlights that family members should also support and affirm caregivers. “Treasure your caregivers — they are an invaluable resource. Give them time off by taking turns to look after their loved ones with dementia,” he says.

Advice for Caregivers

advice for caregivers

Familiarise yourself with the caregiving tasks, including how to administer medication and how to keep track of medical appointments
Look for resources that can ease your burden, including support groups and financial schemes
Don’t be afraid to ask others for help
Don’t be afraid to ask for rest from your caregiving duties
Meet up with friends
Eat well, have enough rest and exercise regularly
Try relaxation techniques such as going for walks, meditation, and doing things you enjoy
Don’t put too much pressure on yourself to perform
Recognise that the symptoms displayed by the patient is due to the disease and not the person. You will then find it easier to manage.
Aim to enjoy and find meaning in the process of caring.

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This article was last reviewed on 21 Dec 2021