Opinion

Improving the lives of Australians with dementia

October 3 2019

By Professor Greg Tegart and Anne Livingstone

Australia’s population is ageing. As in many other countries, a combination of improved health care, shifting birth rates and declining death rates are increasing the number and proportion of older people in our society.

In 2017, 3.8 million Australians were aged 65 and over – 15 per cent of the total population. By 2057, that number is projected to grow to 8.8 million, or 22 per cent of the population. The ageing of our society presents a number of challenges, including mounting pressure on national budgets and health and social services.

But there are also growing opportunities for ageing people to live a high quality of life independent from institutionalised care like nursing homes and hospitals. Digital technologies and data processing provide new tools for people to effectively manage their long-term care. Innovations in assistive technologies for security, safety, diagnosis, treatment and mobility are helping develop this concept of “ageing in place”.

A growing challenge

However, there is a significant cohort of older people who need special consideration: people with dementia. The number of dementia cases worldwide has increased at a disproportionate rate and the World Health Organization has stated that “dementia represents one of the greatest societal challenges for the 21st century”.

In 2019 there are an estimated 450,000 Australians living with dementia. This number is projected to increase to about 600,000 by 2028 and 1.1 million by 2058.

More starkly, dementia is the second leading cause of total death, the leading cause of women’s death and the primary cause of disability for people aged 65 and over.

More than half the people in residential aged care facilities have some form of dementia.

Dementia is a special case for assistive technologies because it isn’t a specific disease.

Senior Woman Holding Alarm Button

Communication devices such as sensors and alarms help older people life with more safety

Rather, it’s a syndrome that refers to groups of characteristic symptoms related to impairment of brain functions.

While various types of dementia have been identified – Alzheimer’s disease is the most common, at about 70 per cent of cases – the symptoms and patterns of deterioration are highly individualised.

Since there is currently no cure, the primary care goal is to maintain or even increase the quality of life for people with dementia. Carers need to identify changes and alter patterns of care accordingly. Technologies can make this easier by assisting in prevention, engagement, compensation, care support, enhancement and satisfaction.

Changing ageing

However, we are only just beginning to interpret how older adults perceive and interact with assistive technologies. This is particularly true for people with dementia, who may experience agitation in reaction to particular types of care.

Some of the assistive technologies currently applied in home environments are:

  • communication technologies such as real-time alarms, telecare, telemedicine and social support networking
  • robotics for cleaning, assistance with eating and companionship
  • home automation such as motion detection, safety monitoring and environment control.

Additionally, micro- and personal devices increasingly allow care to continue outside of the home. They include:

  • smart phones with suitable apps
  • wearable and flexible medical diagnostic instruments
  • tracking sensors for navigation and location.

Wandering can provide people affected by dementia with important physical activity and allow them to express emotions they may find difficult to communicate. But it’s important to ensure that safety issues are covered. Forms of dementia, especially Alzheimer’s, are associated with a severe decline in navigational skills. Technology can help address these needs.

Participation in green and gardening activities can also improve wellbeing and health for people with dementia. Virtual reality is being used to redesign homes, gardens and surrounding environments based on psychological and neuroscientific research.

There are now well-established principles for renovating and constructing new houses that support people with dementia to live in calm, coherent, orientating and gently stimulating environments.

Tech that cares

It’s especially important to minimise the amount of interaction required for everyday living because declines in procedural memory reduce people’s capabilities and place more demands on carers and family. Robots can be very beneficial in this regard – not to replace or compete with humans but to provide assistance and augment available care.

Together with Denmark, Germany and the United States, Australia has been an early adopter of robotic technologies such as telepresence robots, service robots and companion robots.

Carers and family can drive telepresence robots remotely to gain visual access for monitoring and to help with caring tasks like medication control. People with early stage dementia can use simpler service robots to assist with cleaning and routine activities.

There is evidence of a strong connection between companionship and caregiving. Older adults involved in testing robotic technologies can become emotionally attached to the robots performing tasks beyond their own capabilities.

This is particularly evident with companion robots that take the form of animals, such as PARO – a baby harp seal robot developed in Japan. PARO has sensors that change behaviour depending on the environment, so it is active in the day and “asleep” at night.

We need to develop all of these technologies further, particularly through co-design and co-evaluation with patients, formal and informal carers, and clinicians.

9948082-16x9-700x394

People living with dementia can find comfort in robot companions.

But in many cases, isolated technologies will have limited impact. We can multiply their benefits by combining them. There is a need for a common system concept to seamlessly integrate devices and service functions through secure networks.

This must be linked to a better understanding of the outcomes of care interactions, based on the processing of accumulated end-user data. The lack of a standardised language and evaluation criteria to define and describe the technologies and their outcomes is another major challenge.

Empowering the vulnerable

Two important issues arise from developing and using assistive technologies in the treatment of dementia.

The first is alarm fatigue. This commonly occurs across the different uses of technologies that warn of changes in behaviour. Carers can be so bombarded by alarm signals from various sensors that they become desensitised. This results in missed alarms and delayed response times. A solution is to use data processing to intelligently filter signals and guide the carer’s response.

The second issue is the ethical and legal aspects of developing and using assistive technologies. Dementia challenges traditional principles that guide research, particularly the need to obtain participants’ consent. Such consent depends on individuals having decisional capacity.

In the past, the rights of people with dementia have been overridden. Restrictive practices such as physical restraints and medication have been used to exclude older people from making decisions.

A solution is to use the United Nations Convention for the Rights of Persons with Disabilities to develop a robust, rights-focused regulatory framework for the use of assistive technologies in dementia care.

Dementia-friendly communities

Drawing all these threads together is the concept of dementia-friendly communities. Many of the difficulties faced by people with dementia relate to stigma and lack of awareness about dementia in society. In a dementia-friendly community:

  • people are aware of and understand dementia
  • people with dementia continue to be active participants in their own lives
  • health staff are educated about dementia and treat such people with respect and empathy
  • businesses provide accessible services to people with dementia and opportunities for their employment
  • the physical environment enables people with dementia to move about safely.

The concept has been implemented in Europe, where many countries have now designated dementia-friendly communities. These build on the Age-Friendly Cities movement promoted by the World Health Organization.

As an example, in 2015 the British Standards Institute published a document titled “The code of practice for recognition of dementia-friendly communities in England”.

A critical point is that people with dementia and their carers are an integral part of the process.

In Australia, the Federal Government has funded a program administered by Dementia Australia to develop dementia-friendly communities.

bigstock-164442407

 There are about 160 such communities across all states in Australia. The concept is easier to implement in smaller cities and towns. Three excellent examples are Beechworth, Kiama and Waverton.

Standards for living

It has become clear that we need a national commitment to innovation to drive changes in our approach to ageing and the delivery of aged care, particularly for people with dementia. The work of the British Standards Institute shows that standards could provide a way of setting out the principles for delivering the new products, services and solutions needed to make such changes.

In December 2017 the International Organisation of Standardization (ISO) established a new technical committee (ISO/TC 314 Ageing societies) to address these issues. An Australian national working group (MB-009-11 Ageing workforce) was established to enable our participation. The ISO Technical Committee has agreed on three priority areas:

  • inclusive ageing workforce
  • dementia-inclusive communities
  • carer-inclusive and accommodating organisations.

Three international ISO meetings have been held in the UK, China and Germany. They’ve aimed to gain consensus on the parameters for new standards in each of the priority areas. This work involves 19 countries as participating members and 17 countries as observers.

Specifically, the Dementia-Inclusive Community Committee has explored best-practice case studies from around the world and identified the common themes. It’s working to develop the framework for an international standard to be released in 2020.Australia is moving to set up its own national technical committee.

At a Leadership Roundtable in Sydney in December 2018 it was emphasised that Australia particularly needs to:

  • support activity on younger onset dementia
  • involve culturally and ethnically diverse people and groups
  • ensure that activities are driven “by the community for the community”.

When it comes to improving their quality of life, the future for people with dementia in Australia looks bright.

Greg Tegart - bio
Professor Greg Tegart AM FIE Aust. FTSE

Professor Tegart is a retired materials technologist who has had a long career in academia, industry and government. He is currently working on the application of assistive technologies for the aged and disabled. He was ACT Senior Australian of the Year in 2016.

Anne Livingstone - Projects and Research Director at Global Community Resourcing
Ms Anne Livingstone

Ms Livingstone is Projects and Research Director at Global Community Resourcing and has a particular interest in the application of digital technologies in community-based care and consumer-directed support. She is currently the Australian representative at ISO/TC 314 Working Group 02 Dementia – Inclusive Communities.