Dementia Action Week (19-25 September) seeks to encourage all Australians to increase their understanding of dementia and learn how they can make a difference to the life of people around them who are impacted by dementia.

Not a normal part of ageing, dementia is a progressive and life-limiting condition. Today it is the second leading cause of death in Australia and the leading cause of death for women.

Currently, close to half a million Australians are living with dementia and almost 1.6 million Australians are involved in their care. With a rising prevalence, nurses and allied health professionals are increasingly likely to care for people with cognitive impairment or dementia in many care settings.

Two in three residents of aged care facilities in Australia have moderate to severe cognitive impairment. The Final Report from the Royal Commission into Aged Care (March 2021) recognised that dementia care should be core business in aged care services. To transform the way dementia care is delivered across the community and in residential care, one of the Commissions’ recommendations was mandatory dementia and palliative care training, with every aged care organisation having the responsibility to invest in staff education.

Education, specialised training, and skills acquisition are hallmarks of good dementia care.

What it is

Dementia represents one of the biggest global health problems facing society today. Rather than a specific disease, dementia describes a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. Advanced dementia is characterised by profound cognitive impairment, affecting functional ability and communication.

Why is dementia complex?

Dementia is individual and varied. A person living with cognitive impairment may:

• have trouble remembering, learning new things, concentrating, or making decisions that affect their daily life.
• find it difficult to follow a conversation or find the right word.
• have altered vision and spatial orientation skills, for example, they may have difficulty in judging depth or distances, such as steps and stairs and seeing patterns or objects in three dimensions including articles of clothing.
• have altered orientation to time, place and people which can lead to confusion and anxiety.
• have changes in personality, mood, and emotion, they may become apathetic and withdrawn, or anxious and easily upset. In some cases this might include the psychiatric symptoms of dementia in the form of hallucinations and paranoia.

Cognitive impairment occurring with dementia ranges from mild to severe. With mild cognitive impairment, the changes in cognitive function do not interfere with the person’s functional capacity for activities of daily living, however, achieving some tasks may need additional effort.

Severe cognitive impairment interferes with a person’s functional ability. This can include their ability to understand the meaning or importance of something, to recognise familiar people and places, to plan and carry out tasks, and make decisions. Severe cognitive impairment also interferes with a person’s range of movement, balance and strength, and there is an increased risk of falls and skin injuries. Difficulty swallowing (dysphagia) or failure to recognise the symptoms of hunger or thirst also impact body condition. These losses progressively impact on their ability to live independently.

Research – some new developments

Until recently, the focus on dementia research has been on prevalence and the urgency of finding a cure. This work continues but currently there is no cure for dementia and no effective treatment to slow progression. However, we do know some of the risk factors and many ways to make a positive difference to the life of people with dementia.

There are at least twelve modifiable risk factors for dementia: hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, excessive alcohol consumption, traumatic brain injury, air pollution, low level of education, and low social contact. These are thought to be associated with four in ten cases of dementia.

To help Australians with dementia, the Australian Dementia Network (ADNeT) has established the Clinical Quality Registry (CQR) for dementia and mild cognitive impairment (MCI). The CQR systematically measures the quality of diagnosis and care for people newly diagnosed with either dementia or MCI. Using co-designed surveys, the CQR gathers important perspectives of people living with dementia and their carers. In July 2022, ADNeT Registry released their first report providing a ‘real world’ snapshot of care received by people newly diagnosed with dementia and MCI, which is the 866 registry participants. Key findings include that Alzheimer’s disease is the most common dementia subtype (55.4%), almost half the participants were aged 75-84 years, 40% of participants were born overseas, and 30% were living alone. This already informs us as to some of the care considerations that could make a difference when providing care.

As dementia progresses, an approach to care based on palliative care and individual needs of the person is appropriate. This might seem overwhelming given the degree of variation outlined above indicating that a standardised approach would not be appropriate. However, referring to the evidence can help improve your understanding of dementia and cognitive impairment and to identify what might help based on what others have already learnt in similar circumstances.

Evidence-based resources to support dementia care in practice

Evidence informs care decisions and provides a guide to effective and appropriate care. Awareness of the evidence can also confirm where best practice is already in place. Commissioned by the Australian Government and launched in 2017, palliAGED is the palliative care evidence resource for the aged care sector. Not surprisingly, Cognitive Impairment and Dementia is included in this major resource.

Recent updating of this topic’s evidence summary and evidence synthesis highlighted some important considerations including:

• recognition that MCI or mild neurocognitive disorder is distinct from and does not always progress to dementia.
• people with cognitive impairment are at increased risk of treatable health problems and most have at least one other chronic condition that needs to be included in planning and delivering care.
• symptoms of delirium may be dismissed as a normal part of ageing, or seen as dementia, potentially delaying appropriate care.
• many validated assessment tools are available for dementia including Mini-Mental Sate Examination (MMSE), Montreal Cognitive Assessment (MoCA), Kimberley Indigenous Cognitive Assessment tool (KICA), and Rowland Universal Dementia Assessment Scale (RUDAS) which are being used by the ADNeT Registry.
• responses to challenging behaviours should emphasise identifying and responding to the underlying causes of the person’s behaviour; there are many ways to do this and how this is communicated with family is important.
• common symptoms such as pain, depression, and agitation are often under-recognised and under-treated.

This information has now been used to update the palliAGED Practice pages for cognitive impairment and dementia where you will find suggestions on what you can do and what your organisation can do to provide best practice care.

In 2022, the palliAGED Practice Tip Sheets were also reviewed and five new topics added to the collection including Advanced Dementia - Behavioural Changes. This Tip Sheet alongside the Advanced Dementia Tip Sheet can be a useful tool for self-directed learning or in-house training to support new staff to provide quality dementia care.

There are ways to make a positive difference to the life of people with dementia and their family and carers. The latest palliAGED evidence update and resources show some of the ways that, as a health professional, you and your team can be part of bringing about those positive differences.


Authors:

Susan Gravier, Research Officer, CareSearch and palliAGED, Flinders University.

Michelle Harris-Allsop, RN and Dementia Consultant, Care Partnerships Australia.

Dr Katrina Erny-Albrecht, Senior Research Fellow, CareSearch and palliAGED, Flinders University.