Dementia Role Reversal: Who Is the Caregiver Now?

But What Happened?

Dementia causes brain cells to die at a faster rate than normal. As a result, the mental abilities of a person with dementia decline over time.

Dementia in Singapore

As Singapore's population ages, the number of people suffering from dementia is expected to rise. In Singapore, about 1 in 10 (amongst the elderly aged 60 years and above) suffers from dementia. This corresponds to approximately 82,000 people with dementia in 2018 and is projected to increase to 152,000 by 2030.

The Institute of Mental Health attributes this increase in the number of people with dementia to Singapore's ageing population. There is also a growing number of people who suffer from stroke, obesity, diabetes, and hypertension, which are risk factors for dementia.

This damage can be caused in several ways, the most common of which is Alzheimer's disease. This is a degenerative condition that is caused by the death of nerve cells. It mostly affects people over the age of 65 and accounts for 50% of dementia cases in Singapore.

Strokes may cause vascular dementia, which occurs when the blood supply carrying both oxygen and nutrients to the brain is interrupted by blocked or diseased blood vessels. Vascular dementia accounts for about 50% of dementia cases in Singapore. Former British Prime Minister Margaret Thatcher might have suffered from this form of dementia as she had a series of strokes.

Unlike Alzheimer's disease, one can reduce the risks of vascular dementia. The risk factors of vascular dementia include high blood pressure, a history of stroke, diabetes, obesity, and smoking.

Besides Alzheimer's disease and vascular dementia, there are also other forms of dementia, such as Lewy body dementia and Huntington's disease.

While it is normal to have some memory loss with old age, a person only receives a diagnosis of dementia if the symptoms interfere with their daily life. These symptoms should affect more than one area of brain function – whether memory, language, or communication.

Dementia Caregivers, You Are Not Alone

Nursing homes can provide respite care for the caregiver and dementia patient. When Zenia found out that her mother-in-law had dementia, Madam Goh was already at the moderate stage of dementia, where she had trouble doing the routine tasks that she used to do. As a result, the family persuaded Madam Goh to move in with them to provide a stronger support network to better care for her.

As Madam Goh needed continuous care and support, the family sent her to an Eldercare day centre that provided her with a structured day care programme from Monday to Friday. When she is home in the evenings and weekends, Zenia, Zenia's daughter and their domestic helper take turns to care for her.

Caring for someone with dementia can be challenging both physically and emotionally. Dementia can cause a person's personality and behaviour to change. Dementia caregivers have to manage someone who may display signs of depression, anxiety, hallucinations, aggression or wandering behaviour.

Growing Level of Caregiver Support

For Madam Goh, having a strong support network has helped family members to cope better with caring for her. There are different stages of dementia, and as the illness progresses, the brain becomes more damaged, so more support would be needed over time.

Not only do the caregivers have to manage the patient's nutrition, hygiene needs and even sleeping habits, they also have to consider how to communicate sensitively with someone with dementia.

Today, Madam Goh's dementia has progressed to an advanced stage since it was diagnosed five years ago. She requires assistance with her day-to-day activities.

"Her ability to communicate has deteriorated a lot. Sometimes she may say a few words, other times she can repeat after you with amazing accuracy, but much of the time, she is blabbering," said Zenia.

For Zenia, being sensitive to her mother-in-law's needs and understanding towards her changed behaviour is a helpful approach to caring for her. By responding with compassion to people with dementia, we can help them to retain their sense of dignity and self-worth.

Madam Goh hardly communicates verbally now, and she can wander and become lost if not supervised. She also needs help with toileting and has problems swallowing and drinking water as liquids can cause her to choke. She needs to eat blended food and sometimes needs to be coaxed to eat.

The main challenge of caring for a person with dementia is that communication is not always easy. Madam Goh's support network can be emotionally affected by her dementia. There have been difficult moments, such as when she accused the family of stealing from her.

"We learned not to take offence when we understood her condition. Going for seminars and talks helped us to understand where she was coming from," said Zenia.

Dementia care recipients may sometimes behave aggressively, either physically or verbally. This can endanger the person with dementia and their caregivers. Aggressive behaviour may be verbal like swearing, screaming, or making threats, or physical like hitting, pinching, or scratching.

The causes could be biological, social, or psychological. Understanding what is causing the person's behaviour can help caregivers find a solution.

Another form of support is to join a support group, such as the dementia support groups at Khoo Teck Phuat Hospital or Alexandra Hospital. Being in a community of people with dementia or groups of families with dementia can be helpful. You can share experiences, learn tips, and gain useful insights about those who are having similar experiences.

Dementia Caregiver Stress: Taking Care of Yourself

Caring for your family member who has dementia can be rewarding, but the commitment can cause caregiver stress, and take a toll on the caregiver in the long term. Mental and emotional strain can be caused by stress, exhaustion, worry and continuous care demands. So, caregivers should make the effort to relieve stress, care for their personal well-being, and ensure that their own needs are met first.

Always remember part of your duty as a caregiver is to look after yourself. Pick up some simple relaxation techniques, such as deep breathing exercises—a few deep breaths can help relieve stress. Exercise at least 150 - 300 minutes a week as regular exercise not only improves your mood and appearance, but it will also give you opportunities to meet new people. Ensure you eat healthily and use My Healthy Plate as a guide to plan your meals and last not least get sufficient sleep. Most caregivers may not get enough sleep because their carer needs help at night hence sought help from family members to take turns to stay awake and tend to the dementia patient.

Self-care is not being selfish, but it is about taking responsibility of one's own health and well-being. 

With dementia, one of the hardest things is to see someone you love change and become like a stranger. One way of looking at it is that the individuality of the person is not lost, just increasingly concealed, where they still have their spirit and essence even though their personality has changed.

"My mother-in-law has not lost her personhood. There may be a lot of things she is not able to do now. But I don't see that as having lost her totally. We don't feel that sad, we try to make her as comfortable as possible and to enjoy her as long as she is with us," said Zenia.