Dementia poses ongoing challenge: Services, carers in need

By | September 16, 2019

Dementia service providers and carers are calling out for help now as predictions show rates of people living with the condition will double. Danielle Cetinski investigates.

Dementia is used to describe a range of illnesses affecting the brain, leading to memory loss, behavioural changes and in some cases hallucinations or Parkinsons-like symptoms – it is also terminal.

Dementia Australia currently employs two staff members in Dubbo to educate people across the Central West affected by, or volunteering with people with, dementia and connect families with services.

Educator Jenny Roberts said 6500 across the Calare and Parkes federal electorates lived with the condition, which would double in the next 50 years.

“It’s a big adjustment to get used to a diagnosis of dementia,” she said.

“You don’t realise that if it’s someone you haven’t seen for awhile, their abilities might have changed a lot.”

Ms Roberts said people with dementia often suffered discrimination, particularly during conversation, and assumptions could be made about a person’s capacity to make decisions, drive, cook or even continue to work.

“People will turn straight to the carer and talk as if they’re not there,” she said.

With dementia affecting every patient differently, she urged people instead to take any out-of-context comments or agitation in their stride and encourage them to do the things they were good at.

Dementia Australia dementia care navigator Sharon Doyle and educator Jenny Roberts are based in Dubbo and help families across the Central West.

Dementia Australia dementia care navigator Sharon Doyle and educator Jenny Roberts are based in Dubbo and help families across the Central West.

“They’re still human and they can still contribute to the community – we’ve got to keep them engaged,” she said.

Charles Sturt University Associate Professor Maree Bernoth, who worked in aged care for 35 years before completing her PhD, said working with dementia was rewarding but also very frustrating at times.

She said during that time the ratio of registered nurses working was higher, many of whom specialised in dementia care.

They treat the behaviour that’s confronting rather than looking at the cause.

Charles Sturt University Associate Pprofessor Maree Bernoth

“That’s an issue that needs to be addressed now,” she said.

Associate Professor Bernoth said people with dementia, particularly those suffering delirium, were less likely to be treated correctly for pain.

“They treat the behaviour that’s confronting rather than looking at the cause,” she said.

Charles Sturt University Associate Professor Maree Bernoth turned to research after decades in the aged care sector.

Charles Sturt University Associate Professor Maree Bernoth turned to research after decades in the aged care sector.

“I’ve been involved in a few studies and that issue doesn’t seem to be going away.”

She said there were several branches of research and trials under way, but dementia remained difficult to diagnose.

“There’s research around looking at the optic nerve because the optic nerve is closest to the brain and there’s another group of scientists looking at a blood test,” she said.

Associate Professor Bernoth said research for many years was focused on a protein in the brain called tau, which was linked with Alzheimer’s Disease, a form of dementia.

With little result, she said focus had switched to the carotid artery linking the heart and the brain and whether build-up in the artery could cause tau to be released.

But she said good work was being done in keeping patients well.

There’s research around looking at the optic nerve because the optic nerve is closest to the brain and there’s another group of scientists looking at a blood test.

Charles Sturt University Associate Pprofessor Maree Bernoth

Trials she conducted in the 1990s proved how important sensory experiences were in helping with memory, including the use of lavender.

“That was very effective with the ladies, but wasn’t so successful with the men,” she said.

“The smell of lavender brings back memories of mothers and wives.”

She said St Catherine’s in Bathurst ran film activities with patients where they could make films and “have a laugh” and virtual reality was starting to become an option.

“Often they want to go home and they get agitated, but we’ve got the capacity to film where they grew up and show it to them,” she said.

“Music is a strong factor in memory, and singing – people who have lost the ability to speak can often sing and they remember the words.”

Music is a strong factor in memory, and singing – people who have lost the ability to speak can often sing and they remember the words.

Charles Sturt University Associate Pprofessor Maree Bernoth

Although there is no cure for dementia, she said everyone could cut their chances of contracting the disease by eating well, taking care of their cardiovascular health, managing alcohol intake and staying social.

Ms Roberts said challenging the mind was also important.

“Even if it’s just swapping hands when you brush your teeth,” she said.

Services support carers in need

CEO of the Seymour Centre, Terisa Ashworth, was named a Living Legend earlier this year. Photo: CHRIS SEABROOK 111418cterisa2

CEO of the Seymour Centre, Terisa Ashworth, was named a Living Legend earlier this year. Photo: CHRIS SEABROOK 111418cterisa2

LOSING memory and the ability to live independently may be traumatic for dementia patients, but the deterioration is also tough for carers.

With waiting periods up to 18 months for home care packages through My Aged Care, several community organisations are helping carers navigate the assessment process and other assistance.

Dementia Australia educator Jenny Roberts said the organisation was trialling a care navigator until June 2020 for the specific purpose of connecting families with services.

The Seymour Centre in Bathurst also provides a guiding hand, in addition to providing activities for about 75 clients with dementia.

Chief executive Terisa Ashworth said staff could help patients and carers through the assessment process.

“While we’re doing that, we can also talk about what they want,” she said.

St Vincent’s Health and Community Services social worker Steve Walls said digital counselling was becoming increasingly popular.

Social worker Steve Walls facilitates a carer support group from St Vincents Health and Community Services in Bathurst. Photo: JACINTA CARROLL

Social worker Steve Walls facilitates a carer support group from St Vincents Health and Community Services in Bathurst. Photo: JACINTA CARROLL

“We’re partnering with Leep, a group from Sydney and in either September or early November, carers can come with questions about their iPads or laptops and have a mentor for about an hour in a hub,” he said.

“There’s a big push by the government to get people IT literate and complete all their business online, but there are a lot of people who are older or have a disability who are being left behind.”

Facilitating a carer support group each month, he said it was important to cater for carers’ health, otherwise the person with dementia could need residential care sooner.

“We try to keep four wheels on the ground rather than the bus running on three,” he said.

LiveBetter, based in Orange, is one of the organisations in the region providing respite services for 30 clients through Anson Cottage, as well as at-home help for another 200.

LiveBetters Sim Madigan and Ben Chiarella outside Anson Cottage in Orange, where the clients come for dementia respite. Photo: JUDE KEOGH

LiveBetters Sim Madigan and Ben Chiarella outside Anson Cottage in Orange, where the clients come for dementia respite. Photo: JUDE KEOGH

Aged and community services area manager Ben Chiarella said the at-home arrangement was flexible to give carers much-needed time to themselves.

“They can take them to a cafe or it can be overnight in the home,” he said.

Anson Cottage currently provides activities such as memory games and arts and crafts but Mr Chiarella said he wanted to see it become a hub, a safe place where clients could garden and socialise.

However, he said LiveBetter and other organisations were approaching capacity and needed extra funding next year to handle demand.

Community services, who to call

During Dementia Action Week this week, Dementia Australia has asked the community to complete a short survey to help to create an informed, national picture to better understand how and when discrimination against people living with dementia occurs and what it would take to shift the behaviour.

The data will be used to create a roadmap and the survey can be accessed on its website.

The following is a list of services recommended for families seeking assistance.

Dementia Australia

  • National Dementia Helpline – 1800 100 500
  • Jenny Roberts – Carer education, volunteer training and community awareness talks – 0407 615 480
  • Sharon Doyle – Connecting with services and support – 0438 663 530
  • NSW Health: Aged Care Access Centre 1800 942 433
  • Catholic Community Services – Dementia counsellor and dementia carer support group – 6881 3704
  • Celebrating Memories – Group for people living with dementia – 0407 615 480
  • Steven Wall – Social worker, dementia counsellor, carer support group – 6332 8900
  • Seymour Centre – Social support, respite and carer group – 6332 1449
  • LiveBetter dementia respite services – 1800 052 222
  • Amanda Rodwell – Dementia art tours – 6393 8053
  • Jenny Stephens – Orange dementia carer support group – 0412 171 974

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