Cognitive impairment and dementia – using evidence to make a difference

A blog post written by Dr. Katrina Erny-Albrecht & Susan Gravier

A 2022 report card for the life-limiting illness of dementia might state: No cure and no effective treatment to slow progression, but an increasing awareness of the many ways to make a positive difference. The number of people affected by dementia is growing by about 250 Australians each day. [1]

Directly affecting almost half a million mostly older people in Australia, 65% of them living in the community (as opposed to cared accommodation), dementia is already our second leading cause of death. [2,3]

Recognising that our focus on the growing prevalence and urgency of finding a cure has distracted us from the needs of those living with dementia, the Australian Dementia Network (ADNeT) was established. In July 2022, ADNeT Registry released their first report providing a ‘real world’ snapshot of care received by people newly diagnosed with dementia and mild cognitive impairment (MCI). Key findings included that nearly 40% of participants were born overseas, 30% are living alone, 60% had hypertension, and 38% cardiovascular disease. As the number of participating sites grows, this national effort will help us to better understand care needs and where care can be improved at this early stage of dementia. For those at an advanced stage of disease with palliative care needs, good data and evidence can help us to understand what is needed and where we can improve.

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.

Regular review of content against available research evidence is one of the palliAGED quality processes. This ensures ongoing accuracy of palliAGED content and relevance to the Australian aged care context. In 2021-2022, the first round of comprehensive review was completed for all 38 palliAGED topics.

A significant amount of new evidence was revealed for Cognitive Issues which was renamed Cognitive Impairment and Dementia to reflect the increased breadth of the updated content and prominence of dementia.

The summarised evidence describes cognitive changes that can occur and the importance of screening for MCI, delirium, and dementia so that appropriate assistance can be put into place in a timely manner. The revised evidence synthesis also includes new sections on symptom management, decision-making, intimacy and sexuality, and dementia and multimorbidity.

Some of the findings include:

• Recognition that MCI or mild neurocognitive disorder (NCD) is distinct from and does not always progress to dementia with the associated functional decline in daily activities.
• Symptoms of delirium may be dismissed as a normal part of ageing, or seen as dementia, potentially delaying appropriate care responses.
• Many validated assessment tools are available for dementia including MMSE, MoCA, KICA, and 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.
• 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 considered when planning and delivering care.
• Common symptoms such as pain, depression, and agitation are often under-recognised and under-treated.

Given the inevitable loss of capacity and communication, advance care planning is highly relevant for adults living with dementia but can also represent a challenge. The value of supported decision-making to provide a person with cognitive impairment the tools they need to make decisions for themselves is emerging. So too is evidence on approaches to intimacy and sexuality in the context of dementia, a sensitive and sometimes challenging topic for aged care providers and care organisations.

In 2022 the palliAGED Practice Tip Sheets have also undergone review in line with our quality processes. Responding to requests from the aged care sector, we have added five new topics to the collection including Advanced Dementia - Behavioural Changes. This Tip Sheet alongside Advanced Dementia can be a useful tool for self-directed learning or in-house training to support new staff to provide quality dementia care.

We started by noting that currently there is no cure and no effective treatment to slow progression, but many ways to make a positive difference to the lives of people with dementia. The latest palliAGED evidence update and resources show us some of the ways we might bring about those positive differences. Seeing the person rather than the disease is probably the most important starting point and should help us to do things with rather than to people living with dementia.