SINGAPORE, March 31 — His mother was diagnosed with early-stage dementia eight years ago, but coping with her condition took a challenging turn for Robing Ng two years ago. That was when the gentle and mild-mannered woman he had known all his life began to have episodes of aggression and anger.
The deterioration of her condition began with hallucinations at night, which agitated her. Then came the flare-ups.
“She’d throw things and scold other residents at the dementia day-care centre she was attending. She would also lash out at my dad. Previously, she was never the type who went around scolding or shouting at people,” said Ng, who is the main caregiver of his mother, Sally Tan, 70.
Last year, Tan went ballistic during a stay at Changi General Hospital (CGH), where she was admitted for observation of her worsening symptoms.
“Every morning, it would take four nurses to change her diaper. She would push or pinch them, sometimes until they bruised. She is very strong for her age,” said Ng, who works as a manager at the hospital.
For caregivers of those with dementia who may display aggressive or violent behaviour such as hitting, biting, scratching, pushing or lashing out verbally, symptoms such as worsening memory loss, confusion, anxiety and forgetfulness may seem easy to manage in comparison.
While not exceptionally common in individuals with dementia, aggressive or violent behaviour is one of the major reasons for significant caregiver burden and institutionalisation, said Dr Magadi Gopalakrishna Harish, senior consultant at the department of geriatric psychiatry at the Institute of Mental Health. The majority of dementia patients at IMH are admitted for severe behavioural issues like aggression.
According to data worldwide, behavioural and psychological symptoms of dementia — which includes aggression — are seen in one in three dementia patients living in the community, and 80 per cent of those residing in care or nursing homes, he said.
Aggression is more commonly observed in male patients and those with aggressive personality traits prior to the onset of the disease, said Dr Harish. But it is also seen in usually placid individuals.
Why aggression occurs
Structural and neurochemical changes that occur in dementia, coupled with other psychological and environmental factors, can result in aggressive behaviour, said Dr Harish.
About nine in 10 people with Alzheimer’s disease, the most common cause of dementia, develop some behavioural symptoms during the course of their disease. Of this group, about 20 to 40 per cent experience aggression, agitation and irritability, usually in the late stages, said Dr Lim Si Ching, senior consultant at CGH’s geriatric medicine department, who is currently treating Tan.
Symptoms may occur earlier for other types of dementia, such as vascular dementia and frontotemporal dementia. Personality change is an early feature of frontotemporal dementia, which Tan has.
It affects the frontal lobes of the brain that control human behaviour and personality. This part of the brain also keeps urges and desires in check by exerting inhibitory effects when the situation is inappropriate, said Dr Lim.
“Once the frontal lobes are affected, especially in frontotemporal dementia, the inhibition no longer exists, so the patient’s behaviour becomes unpredictable and disinhibited. (This can) cause great distress among family members and caregivers,” she said.
Emotional or physical discomfort from unmet needs can also set off challenging behaviours in individuals with dementia, who are often unable to express themselves in appropriate ways.
Behavioural and psychological symptoms of dementia can cause high levels of caregiving stress and burnout. “It is not uncommon to see family or caregivers wanting to place their relatives in formal care settings, not just due to the level of aggression itself, but also due to poor understanding of the nature of dementia and/or poor relationship with the patient,” said Dr Harish.
But it is possible to minimise or eliminate aggressive behaviour in a significant proportion of patients, especially if the triggers are identified and appropriately addressed, he said.
Understanding the triggers
One way is to have a better understanding of the person’s likes and dislikes, and preferred activities.
“Family and caregivers can then organise the patient’s day such that they anticipate and avert problems before they occur. For instance, if the patient prefers to take a shower after lunch instead of in the morning, schedule it accordingly to avoid tantrums,” said Dr Harish.
Having dementia does not equate to aggression, said Nisha Abdul Kader, senior social worker at AWWA Dementia Day Care Centre. “Instead, caregivers should ask what the triggering factor of the aggressive behaviour might be. For example, is their loved one trying to express some unmet needs?”
Staff members at AWWA Dementia Day Care Centre take a person-centred approach, which has been effective in preventing and managing challenging behaviours. Among the 80 seniors the centre caters to each year, two to three may have some aggression issues, said Nisha.
She recalled an attendee who used to grab everything in sight and might slap or hit anyone who tried to stop her. The centre’s staff worked closely with the family to understand her background and preferences better, and came up with a solution after “some trial and error”.
“We learnt that the lady used to work several jobs to support her nine children when they were young. Due to her dementia, she forgot that they have all grown up and are working but her maternal instincts remained. She told me that everything she had been collecting were for them,” said Nisha.
The woman displayed less aggressive behaviour after the staff gave her two bags filled with stuffed toys to carry around the centre.
“She was particularly fond of baby dolls. Knowing her past, likes and dislikes, helped,” said Nisha, adding that it is important to keep the person engaged in meaningful activities and social interaction in spite of their condition. Caregivers should seek help from professionals and community services if they have trouble coping.
Caregivers should also look out for new medical issues such as urinary infections, fever and imbalances in electrolyte or sugar levels, which can lead to delirium, said Dr Lim. This is particularly common among elderly with dementia, who may then develop sudden behavioural changes, she said.
“This new change in behaviour should improve when the underlying medical condition is treated but full recovery may take up to two months. In some cases of repeated episodes of infections or after a long, complicated hospital stay for example, recovery may take up to six months. Having said that, some patients never make a full recovery back to their baseline,” said Dr Lim.
In some cases, certain psychotropic medication may be used to control aggression, said Dr Harish.
But drugs may have side effects such as increasing one’s risk of falling and are usually a last resort, said Dr Lim.
If all strategies fail, a patient may need to be hospitalised in a safe setting to stabilise his mental state, said Dr Harish.
For Ng, it meant moving Tan to a nursing home designed for dementia patients last year, after he was unable to manage his mother’s challenging behaviour and on the brink of caregiver burnout.
“Even if I were to hire two live-in helpers to care for my mum, we might not be able to manage her unpredictable behaviour and hallucinations which would keep her up at night,” he said.
While this has provided some respite, it has also brought on a sense of guilt, although Ng visits his mother almost daily after work so that she does not feel abandoned.
“Every dementia patient is different and no amount of advice can ever prepare caregivers enough. But know that the person with dementia is also suffering, and that showing agitation or aggression is probably one way of expressing themselves,” he said.
Families should nonetheless treasure moments with their loved ones, he said. “Because when they (pass) on, we will definitely miss their presence.” — TODAY