Many people are fearful of interacting with those suffering from Alzheimer’s disease and other forms of dementia because of stigma and discrimination.
Communicating with people who have dementia can be challenging, particularly when their condition becomes more serious and causes them to lose their grip on the present and become increasingly confused.
It is common for people with dementia to not recognise family members or close friends or think that they are in another place and time.
What do you say, for example, when a person with dementia asks difficult questions such as inquiring on a parent who has long passed away? How do you explain that you are not their daughter, but a neighbour? That you are not trying to steal their money?
As challenging as it is, communicating with people living with dementia is essential in maintaining their quality of life, says Universiti Malaya communication disorder expert Dr Leela Koran.
Social interaction, she says, can even delay deterioration in those with dementia.
“The communication difficulties of people living with dementia can be very complex. Family and friends may have a hard time figuring out how to behave around them or how to talk to them.
“For family, dealing with the ‘loss’ of their loved one who, though physically present, appears to have become a different person, is difficult.
“Friends and relatives who don’t have regular contact with the person with dementia might be afraid of offending him or the family.
“What if their inability to act appropriately causes them distress? So, they stay away or seem to ignore the person with dementia,” explains Dr Koran.
Dementia is a syndrome associated with the ongoing deterioration in the brain and its functions.
This decline is often noticed when memory loss becomes more evident – not just forgetting where you left the car keys but unable to remember the people around you, things around the household or events that have taken place.
“Dementia also affects attention, comprehension, problem solving and communication, among others.
“For most family caregivers, taking care of the physical needs of their loved one is top priority, such as keeping them healthy, comfortable and safe, and seeing to their personal hygiene, particularly when they are no longer able to care for themselves.
“Communicating with the patient may seem less important. But while communication deficits are not life threatening, it can affect their well-being and general quality of life,” says Dr Koran who specialises in acquired communication disorders or language loss experienced by adults after an illness or injury to the head.
“When communication becomes an issue, people with dementia lose the opportunity to participate in social activities.
“This can affect their self-image and in many cases, depression is an associated problem. In order to maintain their quality of life, communication is essential. Some would even agree that it is a human rights issue,” she says adding that research shows that social interactions can significantly delay deterioration of dementia.
“Among bilinguals, for example, maintaining the use of two languages has the potential to improve their cognitive reserve,” she adds.
Not knowing how to talk to a person living with dementia is a common problem that needs to be addressed, says Dr Koran.
Organisations like the Alzheimer’s Disease Foundation Malaysia that run workshops and courses on caring for and communicating with people with dementia and raise awareness about the disease are crucial in building an understanding about the complexities of the disease.
“What should people know about people with dementia?
“Firstly, that they are individuals with all the qualities and quirks that come with being a person.
“Also, the condition affects people in different ways and we need to be aware that there are differences in the severity and stages of decline. No two people living with dementia are alike,” explains Dr Koran.
The onus, says UM neurogeneticist Dr Azlina Ahmad Annuar, is on caregivers to guide others and let them know that their loved one is still very much present.
“People don’t mean harm … they just don’t know how to respond,” says Dr Azlina, who is caring for her elderly mother.
Her mother was a sociable person before she got ill. But now people would talk to Dr Azlina about her mother as if she was not standing among them at gatherings, as though she was not present.
“What I do is to try and deliberately bring her into the conversation and get others to acknowledge her. People are unsure how much to say or what to say, and as caregivers, we need to guide them,” says Dr Azlina.
The underlying problem, says Dr Koran, is the lack of understanding in society about dementia.
“Awareness campaigns that target the community is one way to deal with the stigma surrounding dementia.
“They can address the ‘fear of the unknown’ by making knowledge accessible to the public.
“Perhaps we can start by educating people in our families and our circles,” adds Dr Koran.