With a rapidly ageing population, a widespread conversation about the largely unspoken issues associated with Alzheimer’s is long overdue. There are more than 81,000 people living with dementia in Victoria, a figure projected to triple by 2050. Alzheimer’s Australia, the country’s leading organisation for treating Alzheimer’s, is setting high standards on ‘Creating a Dementia-Friendly Nation’.
Meanwhile, many individuals and families are driven into social isolation following a diagnosis, as cuts on dementia care and the limited number of carers burden the ageing Australian society.
Anne Fairhall, 71, whose husband is now in full time care due to fronto temporal dementia, is a member of Alzheimer’s Australia Vic’s Consumer Advisory Committee. Anne used to home care for her husband for more than nine years.
“My husband’s first symptoms started about 25 years ago,” she tells Neos Kosmos, adding that he was in his early fifties, a father with two young children.
“He went into high-care four years ago, but I still share a lot of his care and stay very involved,” she adds, noting that the journey of caring is a very complex one due to the stress, grief and loss associated with the diagnosis.
“The first things I noticed were personality changes, communication issues, which didn’t suit his well-educated, high intelligence profile.”
Anne’s husband was a senior executive at the time and an academic, fluent in seven different languages. He had complex hobbies like aircraft flying and navigation. People like him often compensate for their losses, being able to mask their symptoms for a very long time.
“The other thing about our situation is that his type of dementia is quite rare, thus we had a lot of difficulty in the early years having doctors to believe there was a dementia onset,” she says, stressing the importance of an early diagnosis.
“I think it’s crucial for GPs and doctors to instantly direct people to Alzheimer’s when there is a suspicion of dementia so they can be properly assessed. Unfortunately, most patients don’t get diagnosed unless it’s too late.”
The family’s first GP and his specialist thought he had depression and anxiety, which is of course a dementia side-effect. Anne changed doctors and once they had a diagnosis she was able to get the support of Alzheimer’s and Carer’s Australia Victoria.
“I was finally able to get in contact with the right people, join training programs, access benefits and services I didn’t even know existed,” Anne mentions. When she first rang and talked to a consultant at Alzheimer’s Australia Vic, they helped her comprehend the situation and realise that she wasn’t the only person in the world dealing with a loved one suffering from dementia.
“They put me onto help sheets, counselling advice about the different types of dementia and were very supportive with the carer, not just the person with dementia.”
Many people with dementia cannot accept their condition and as a result all the responsibility, the burden, falls on the carer’s shoulders. The person with the disorder will get angry and be non-responsive. The carer is the one who has to adjust and process the whole situation, which is bound to create a lot of frustration, stemming from loss of capacity on both ends.
“I became unwell, and a lot of carers doing it for years get seriously ill, being overloaded.
“In the early stages I could still manage but when his behaviour became dangerous,” she says, “I had to close my business and take care of him at home, dealing with some catastrophic symptoms since he wasn’t on medication yet.”
Dementia has financial implications for the family if a carer is a partner, as two people will end up out of work. Anne was a managing consultant running her own business, which along with being a wife and a mum was very demanding. She eventually had to step down from her position – which came with high responsibility – in order to take care of her husband.
“He eventually had to give up his job and I became the main income earner.”
“No one really tells you how to get on to the much-needed government funding, especially if you are a self-funded retiree not in contact with Centrelink,” Anne explains.
When she closed her business, she received a government-provided carer allowance via Centrelink and was made aware of various home-care and dementia specific packages, which are limited but help lift some of the burden, given that the patient is still manageable at home. During the time he was at home, Anne would ring the Alzheimer’s Australia helpline whenever she was faced with very severe behavioural difficulties with her husband and they would guide her through the situation.
“I had the dementia experience in part once before with my husband’s parents, but most people who come across dementia in the family have never imagined it could happen to them.”
“In the case of a partner, you do actually lose the person you know, as the communication and emotional connection break down further.”
Anne insists that the number of carers in high-care facilities isn’t enough, which can lead to remaining carers getting burnt out, tired, unable to provide proper care.
“When the government cuts funds the hospitals cut staff among other things, but as the number of patients increases, reducing the number of carers is definitely not the way to go,” she says.
“Even in a good facility doing its best, things are rough, especially during the night.”
Meanwhile, she believes that funding for more care staff in facilities is imperative as there is a staggering increase of dementia in our ageing demographic, and she opposes to the way the government is approaching things at the moment.
“It is possible to get people to work at aged care facilities, however, there is a whole different story behind finding human resources and training people on how to work in such environments,” Anne explains.
“Dementia requires knowledge on how to communicate in subtle ways, how to deal with behaviours very similar to mental health disorders.”
For Anne, there needs to be not just basic but advanced training for carers at home and specialised training for carers who work in high-care facilities, in order to help them establish effective forms of communication with the patients.
“As patients lose their communication and cognitive skills they can’t even interpret pain into words,” she adds, stressing that dementia carers aren’t just hands and numbers.
A dementia carer needs to have the patience to trigger all of the cognitive elements left within the elderly person, a skill that requires deep and ongoing education – at the beginning of someone’s caring journey as well as during.
“Carers are usually not academics, so the information cannot be absorbed all in one go, in one seminar or workshop,” Anne says. At the same time, when many of the supervisors and team leaders working in aged care haven’t had the chance to skill themselves, they are less able to train others.
“The need for Australia to become a more dementia-friendly and educated community is vital. We will all grow old one day – what will happen to us if we find ourselves in these shoes?”
The goal is to encourage Australians to become dementia-aware, have a better understanding of what it is like for a person to live with dementia, and ultimately be encouraged to create communities where people with dementia and their carers are supported to live a high quality of life, with meaning, purpose and value.