Dementia: ‘What it's like working for an Aged Care support line'

EVERY day, these Australians are the voice on the other end of the line helping everyday people through the biggest challenge of their life. This is what they want you to know.

Working with people who have dementia

They’re the voice on the end of the line talking everyday Australians through the challenges of a diagnosis of dementia. But what’s it like for the people answering calls on the Bupa Aged Care Support Line?

Mary Casey is a nurse and health coach working on Bupa’s Aged Care Support Line. Day in, day out, she provides straightforward advice to a steady flow of people seeking support for themselves or for a loved one. This includes people in the wake of a relative’s dementia diagnosis, who may be feeling helpless and unsure where to turn.

“Often they’re tired, frustrated, confused but always concerned for their relative. They simply don’t know where to start or what their options are and frequently feel disempowered. You can really feel the stress that some people are feeling,” she said. “The time it takes to get information together to organise an aged care placement and the conflicting advice they get about it can be frustrating. They sometimes also feel disappointment with the lack of adequate support available for older, frail people to stay in their homes.”

The latest data from Dementia Australia indicates more than 425,000 people live with the disease and an estimated 250 Australians are diagnosed every day. Without a medical breakthrough, those numbers will continue to rise. While 52 per cent of sufferers are in aged care, the rest reside at home.

Commonly, the signs of dementia are overlooked by family members and loved ones because the progression of the disease is so slow and the signs so subtle. Things like a forgotten power bill or retelling a story a number of times can easily be attributed to forgetfulness, viewed as a normal part of aging. It is often after a separate health crisis, such as a fall or stroke which lands the person in hospital, when a formal diagnosis is made, and it often comes as a shock.

“A phone call with a sympathetic listener can provide both reassurance and guidance,” Ms Casey said. We aim to help cut through the confusion, clarifying what support options are available and how you can access them

Sometimes people living with dementia or other conditions such as Parkinson’s call to request respite care for their carers, as they feel that the family they are living with need a break.

“Once an elderly customer called himself to ask about getting respite care as he wanted to make it easier for his family,” she said. “Due to his health conditions he required a lot of care and even talking on the phone was not always easy for him. He was able to use the phone service to not only help himself, but to show his family that he was still in control of his health. He wanted some time out for himself but also for his family so that they could have a rest too.”

The best part of her job is being able to talk with different people every day. Yet it’s also the most demanding aspect.

“It’s challenging speaking with people who are dealing with very sick or disabled relatives who are not able to return home after being in hospital,” she said. “It’s a difficult time: grief mixed with trying to navigate Centrelink and the residential aged care system as well as supporting their family member, while trying to maintain their own jobs and domestic life.”

Often, the best thing Ms Casey can do is listen and provide reassurance and acknowledgement of their efforts. In a system that’s notoriously difficult to navigate, the helpline team can outline the next steps necessary in the dementia care journey.

“Mostly they appreciate talking to a real person, being able to ask their own questions and feeling supported and that they are not alone,” she said. “I recommend families talk to each other about options and choices they may need to make in the future. Investigate different care options, such as in-home support, and visit retirement villages or care homes to get a feel. They’re not easy conversations to have, but it’s important to think through different scenarios, finances and preferences while they’re fit and able. Things can change so quickly.”

She often checks in with the carers’ welfare too.

“I always ask how they are being looked after — carers often ignore their own health to care for those they love. Carers Australia and Carer Gateway are very helpful with their own phone services and their own local GP can also be very helpful.

“I highlight the available government services that can come in to help with cleaning and other activities of daily living, including taking those living with dementia for an outing while the carers can have some time off for themselves.”

For more information about the Bupa Aged Care Support Line, visit https://www.bupaagedcare.com.au/getting-started/aged-care-support-line or contact us on 1800 780 038, 8am to 6pm, Monday to Friday.

For more information about caring for someone with dementia, visit Dementia Australia https://carers.dementia.org.au/ or phone the National Dementia Helpline on 1800 100 500.

Originally published as Dementia: ‘What it's like working for an Aged Care support line'