Settlement Guide

Settlement Guide: dementia care for migrants

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Dementia is not a normal part of ageing and yet Alzheimer’s Australia predicts by mid-century almost a million people will be living with the illness. Patients from diverse backgrounds face additional challenges in getting an early diagnosis and care support which meets their needs. Carers and health experts advocate a cultural approach to dementia care.

Dementia is a general term for a collection of symptoms caused by disorders or diseases that affect the brain. Common symptoms are frequent memory loss, confusion, personality change, apathy, withdrawal and the loss of ability to perform everyday tasks. Vincent Poisson Program Manager at Rural Services of Alzheimer's Australia says short term memory loss is often a first sign.

Dementia is a general term for a collection of symptoms caused by disorders or diseases that affect the brain

“Often the short term memory will be affected; the person will have difficulty with remembering things that happened in relatively short term. It might be 5 minutes to a day. The thinking may be affected, so the person may have difficulty thinking clearly or making decisions for example. For some forms of dementia their behaviour might change and some of these behaviours might be quite complex and difficult to manage as well. And this is very often where the family will struggle quite a bit.”

Short term memory loss impacts on the patient’s day-to-day living

Vincent Poisson says short term memory loss also impacts on the patient’s day-to-day living.

“We are not talking about someone who just forgets their keys, it’s really someone who constantly is forgetting where things are constantly is forgetting what is the name of the person, so therefore its really affecting their life of daily basis.”

Kasia Bergner works as a Community Carer for Focus Care Solutions, which provides services to welfare organisations such as Jewish Care, Benevolent, Anglicare and Catholicare. She says some patients lose the ability to carry out simple daily tasks.

Alzheimer’s Australia says it’s critical to visit a doctor to get a diagnosis early

“They lose their orientation, if they leave their home they cannot come back on their own, they cannot even remember where the bathroom is or where the bedroom is, forgetting when cooking leaving it to burn, or opening the tap and leaving the water pouring, sometimes they don’t know how to dress or even how to open the door that is shut they don’t know that you have to turn the nob, not to mention answering a phone call, they can even forget how to write.”

Research reveals people from diverse communities are diagnosed later than the rest of the population

Alzheimer’s Australia says it’s critical to visit a doctor to get a diagnosis early. Yet their research reveals people from diverse communities are diagnosed later than the rest of the population. Some patients from diverse backgrounds may be unwilling to discuss the illness in fear that they will be labelled as ‘crazy’.

 

Carers working in African, Chinese and Latin-American communities found people thought an elderly relative’s memory loss was due to normal ageing

Carers working in African, Chinese and Latin-American communities found people thought an elderly relative’s memory loss was due to normal ageing. When a patient needs intensive care, migrant families are often faced with the difficult decision of finding residential care. Alzheimer’s Australia’s 2008 report says the perception that most patients from diverse backgrounds are cared for by family members isn’t true. Family counsellor Vincent Poisson says he’s seen migrant families pressured to act as carers.

Very often people of diverse backgrounds will put a lot of pressure on the daughter or the daughter in-law to be the carer for the person with dementia

“This process is quite difficult for a lot of families and especially for those coming from a CALD background, so our role is to demystify information that might be around. Very often people of diverse backgrounds will put a lot of pressure on the daughter or the daughter in-law to be the carer for the person with dementia. Many of these females very often feel that they don’t have a choice in their caring role. They don’t feel as if it’s necessarily something that they want to do but they have to do.”

Very often especially if someone has a form of dementia like Alzheimer’s disease, which tends to affect the language part of the brain, people will have more and more difficulty speaking a second language and will tend to revert back to their native tongue

Vincent Poisson says language is another barrier for those living with dementia.

“Very often especially if someone has a form of dementia like Alzheimer’s disease, which tends to affect the language part of the brain, people will have more and more difficulty speaking a second language and will tend to revert back to their native tongue.”

Alzheimer’s Australia 2008 report found that patients prefer to be informed about their illness in their native language. Written information in English is often too complex. Dementia carers like Kasia Bergner, who speaks Polish, are in high demand.

Many factors go into a care plan like access to services to facilitate early diagnosis, integrated and coordinated care, and planning for future care and ensuring that patients and families understand what support is out there for them

“[The patients] they reverse back to their native language, they can understand English usually, but they can’t speak it, and so they would respond to you in their native language. I have a Polish lady now. When I come to her she usually speaks English to me, but then when we walk to the shops she starts speaking to the people there in Polish. So she mixes the two languages. She prefers Polish, because she was asking and her family was asking for a Polish carer.”

Dementia researcher at UTS Professor of Palliative Medicine Meera Agar says many factors go into a care plan.

“Early diagnosis, access to services to facilitate early diagnosis, integrated and coordinated care, and planning for future care and ensuring that patients and families understand what support is out there for them and also the kinds of decisions both from financial style care and health care that they need to think about and plan for and consider what their values and wishes around those things are.”

It’s essential to know a patient’s long term wishes

She says it’s essential to know a patient’s long term wishes.

“What we found was that if you haven’t received the proper diagnosis of dementia or that was delayed, you miss out on the opportunity to plan in a timely fashion, that there was lots of gaps between care settings, and communication about people’s wishes regarding the future care were often lost when people went from home to hospital or from home to residential care.”

If you haven’t received the proper diagnosis of dementia or that was delayed, you miss out on the opportunity to plan in a timely fashion

Professor Agar’s research led to the development of the national guidelines for dementia services. Recommendations include that bilingual staff or professional interpreters are provided especially during care assessment. She says health professionals should ask about the wishes of the patient, not the patient’s family or carers.

Alzheimer's Australia provides dementia information in 43 languages

“What we are hoping the guidelines provide is a process and structure by which families are not finding themselves in a crisis decision where the only option to solve that crisis is going to hospital.”

Alzheimer’s Australia provides dementia information in 43 languages. Counselling support services are available on the National Dementia Helpline by calling 1800 100 500.

If you need an interpreter you can contact the National Dementia Helpline through the Telephone Interpreting Service on 131 450.


 

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