When an elderly individual loses their voice, their identity is also at risk. A current aged care initiative is creating resources to assist.
As we age, the nuances of our identity often become intertwined with our ability to express ourselves. For many older Australians, losing their voice—whether due to physical ailments, cognitive decline, or social isolation—can lead not only to a diminished capacity for communication but also to a profound loss of identity. Recognizing this critical issue, a current aged care initiative is dedicated to creating resources that empower elderly individuals to articulate their perspectives and maintain their sense of self.
As a speech pathologist, Associate Professor Sarah Wallace is highly skilled in managing communication disorders. The University of Queensland researcher has a strong commitment to enhancing communication in the context of aged care.
“My grandmother was able to live at home until she reached 99, only spending her last six months in a residential aged care facility. This experience made me realize how vital it is for elderly individuals to preserve their independence, communicate their priorities, and make their own decisions,” Wallace states in an interview with Australian Ageing Agenda.
“When people lack these opportunities, it influences all aspects of their lives – from their quality of life to their health outcomes and sense of identity. Depression is frequently observed in aged care settings, and communication is central to many of these challenges. I am passionate about ensuring that older individuals have a voice.”
Wallace is now realizing her long-held research goals to assist older individuals in having a voice as the chief investigator and project lead of the Conversations about Care initiative.
The five-year co-design project, which was launched in 2023, aims to improve communication in residential and community aged care settings. It is supported by a $2 million Medical Research Future Fund grant, over 20 researchers, a lived-experience advisory group, and nine partner organizations.
Among the five post-doctoral researchers is Dr. Michelle King, a research fellow at the University of Queensland. As a sociologist and lawyer, King states that her interest is in exploring matters of capacity law, decision-making in practice, and how the law operates or fails in the daily lives of people.
“Major improvements are essential in the way we provide aged care services to ensure that the voices of individuals are recognized and to enhance the regulation of services while safeguarding rights,” King stated.
The Conversations about Care project is focused on experience-based co-design to enhance communication and will implement four main components:
- an assessment tool for communication support needs
- online training for communication partners for direct care workers
- guidelines for effective communication
- picture-based resources.
The initiative aims to address communication barriers caused by cultural and linguistic differences and to improve the overall quality of communication. The training is designed to be comprehensive and not condition-specific, addressing intergenerational communication and cultural diversity. Guidelines are also being developed to standardize communication practices in aged care settings, with a focus on effective communication.
Researchers are in the process of analyzing the data they have gathered and are attempting to grasp the communication needs and challenges, according to Wallace.
“The experiential aspect of the project has led us to conduct interviews with 70 senior citizens who receive aged care services, their relatives, aged care workers, and managers of aged care services, asking them to recount their positive and negative experiences and what improvements could be made,” she clarifies.
Most recently, the team has published its first paper, led by Bridget Burton, one of the two PhD students in the research group. Her review of current communication partner training programs for aged care workers, along with initial findings from the interviews, emphasizes the need for thorough, Australia-specific training.
“According to Wallace, “Bridget has been looking at issues from the perspective of the worker, striving to determine what constitutes effective communication in an aged care context and what skills aged care workers must possess to communicate effectively.”
Despite the availability of numerous community communication partner training programs that are “specific to a particular condition,” she points out that they found a notable gap.
“There is a lack of coverage for communication disabilities, intergenerational communication, and cultural linguistic diversity for direct care workers in Australia. We recognize how challenging these situations can be, especially in terms of resources and time for staff, along with the prevalent high turnover rates,” Wallace remarks.
“We have been reflecting on how we might provide training that is easily accessible to aged care staff, which can be delivered flexibly and takes into account the changing workforce. We have identified the need for a solution that is specifically tailored to our environment.”
Our aged care system fails to provide sufficient opportunities for meaningful care discussions.
King emphasizes that communication is a “crucial yet overlooked aspect” of inclusion.
“Numerous individuals have voiced their dissatisfaction with the fact that our aged care system does not allow for meaningful conversations about care,” she states.
The research indicates a necessity for tools that help identify when and how individuals prefer to receive support for their communication, as well as a demand for clear guidelines on how providers can ensure effective communication and adequate support, according to King.
“The same principle applies to supported decision-making,” she remarks. “We require clarity on what this entails and how to ascertain if effective support has been delivered.”
King also oversees the project’s advisory group composed of individuals with lived experience. This group includes six members, one of whom is Lesley Forster, representing older individuals with physical disabilities.
Forster notes that care for older adults and individuals with disabilities has historically been “patriarchal,” with decisions made on their behalf. To illustrate the absence of genuine choice in care decisions, she recounts a personal experience of being coerced by a physician to discontinue her eye injections.
She adds that decisions made in aged care facilities and home care often strip individuals of their right to support due to governmental regulations.
The project highlights the necessity for enhanced training and opportunities for authentic decision-making and person-centered care, according to Forster, who points out that this research also aims to improve care by taking into account the viewpoints of both care providers and consumers.
She emphasizes the importance of conducting the research accurately to ensure it aligns with the needs and desires of those receiving care.
“From my viewpoint, the research has been quite engaging… examining how it could enhance the experience for both parties, as content individuals are significantly easier to care for,” stated Forster.
The project team is set to collaboratively design training and tools alongside stakeholders, which include workers, residents, and representatives from partner organizations such as Wesley Mission Queensland, Southern Cross Care Queensland, and the Aged Care Quality and Safety Commission.
Wallace mentions that they have enlisted representatives from a variety of organizations to ensure the development of a successful initiative in aged care across Australia. Additional partners comprise the Ethnic Communities Council of Queensland, Older Persons Advocacy Network, Dementia Australia, Speech Pathology Australia, Audiology Australia, and Southern Queensland Rural Health.
Wallace expresses optimism that the co-design process will yield effective and significant interventions. The forthcoming step entails a series of workshops aimed at uniting groups of stakeholders to collaborate on various facets of the interventions.
“I hope that everyone contributes their viewpoint on what is crucial in those specific environments, what will facilitate progress, and what may pose challenges,” she remarked.
“The most productive co-design sessions are those where participants feel at ease sharing their experiences. I anticipate a wealth of fruitful discussions and ideas, which will then be transformed into the design of this training, the tools, and the guidelines.”
King shares Wallace’s enthusiasm but recognizes that there remains a “considerable distance to cover” in addressing the concerns highlighted by the Royal Commission into Aged Care Quality and Safety.
“There is a profound level of commitment and enthusiasm present throughout the sector, and I am dedicated to contributing to research that yields real-world benefits,” King remarked.
This includes “clarifying what enhanced communication and decision-making support should resemble in contexts such as residential facilities, aiding service providers and staff in offering improved communication and decision-making assistance and applying our insights regarding effective conversations to empower older adults to voice their preferences and be acknowledged,” she noted.
Forster hopes that the research will increase awareness among decision-makers and enhance the overall quality of care, despite the differing preferences that older adults, caregivers, and providers may possess.
“It is a balancing act between the rights of the individual, the duty of care, dignity, and risk. It is not straightforward, but there is a method that works well for all parties involved and allows everyone to feel more capable of providing care in a more modern and effective manner.”
Wallace, who has contemplated a research initiative of this kind for the last two decades, is optimistic about reaching their desired outcomes.
“If we sincerely collaborate with the individuals who will implement these interventions, and we listen and engage, we will create something truly useful. That is our aim; to develop something that will be beneficial,” she stated. “Something that will carry meaning.”