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What happens when a family member starts to exhibit the warning signs of dementia? How do you handle your new role as a caregiver? Caring for people with dementia can take a toll on your mental health. Find out how self-care, supportive friends and family, and support groups can help everyone affected by the disease.
When her mother-in-law yet again accused the family of stealing her money, it dawned on Zenia Goh Kong Yong, 55, that something was not right.
“When it happened repeatedly, I realised that she could be suffering from dementia. My suspicions were confirmed when I did some research on the Internet,” says Zenia.
She found that dementia sufferers have problems with thinking and remembering information. Some of the warning signs of dementia are: they become more forgetful and can forget recent events like whether they have eaten. They may also misplace things and keep repeating themselves.
All this happened a few years ago. Then, Mdm Goh Khoon May, 85, was in the earlier stages of dementia, where she would misplace her money, forget where she put it, and then accuse her family of stealing.
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.
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)1 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.
When Zenia found out that her mother-in-law had dementia, Mdm 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 Mdm Goh to move in with them to provide a stronger support network to better care for her.
As Mdm Goh needed continuous care and support, the family sent her to an Eldercare day centre that provided her with a structured daycare 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.
The stress and challenge of caring for someone with dementia can be seen in Royston Tan’s movie 3688. There the title character Fei Fei (singer Joi Chua), a single 38-year-old parking attendant, looks after her father (stage actor Michael Tan) who struggles with dementia.
Fei Fei has her hands full coping with a demanding boss, realising her singing dreams and supporting her father. She pins her hopes of fulfilling her dreams on a talent contest. On the night of the finals of the contest, her father disappears. The film explores how some of the relationships of the everyday people surrounding a dementia patient can help in being supportive.
For Mdm 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, Mdm 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.
Mdm 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. Mdm 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, National Neuroscience Institute 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.
Caring for your family member who has dementia shows love and 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.
It is a good idea to pick up some simple relaxation techniques, such as deep breathing exercises—a few deep breaths can help relieve stress almost immediately.
Self-care applies to both the caregiver and the person with dementia. It is about taking responsibility for one’s own health and well-being. It involves taking steps to be physically fit, maintaining good mental health, staying active and avoiding accidents.
This self-care can apply to people in the early stages of dementia, where they are able to live independently, look after their own homes, and care for themselves while receiving support from those around them. However, as dementia advances, they may need help with daily activities, like housework and shopping.
For a person with dementia, eating habits may change, but it remains important to live a healthy lifestyle, to eat well and exercise. These healthy habits also help to prevent dementia. Staying in touch with others and maintaining a social life can keep the person with dementia active, connected and stimulated.
With dementia, one of the hardest things is to see someone you love change and become like a complete 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.
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This article was last reviewed on
Friday, December 11, 2020
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