Improving the timely diagnosis, management and support of people living with dementia, their carers and family

One of the biggest issues facing those living with dementia, health professionals and carers, and our ability to implement appropriate management and care strategies, is that only fifty percent of all dementia cases in Australia are diagnosed. Of those that receive a diagnosis, the average delay between family members and close friends observing dementia symptoms and achieving a diagnosis is over three years.

Through early intervention, we can reduce the impact of dementia on our clients, their carers and families, and improve their quality of life – however, early intervention begins with timely assessment and diagnosis.

What is dementia?

Dementia is a chronic, progressive and terminal condition, consisting of a cluster of symptoms. There are over fifty subtypes of dementia, and each is associated with specific neurodegenerative pathology occurring in the brain. The most common forms of dementia are Alzheimer’s dementia, vascular dementia, and mixed Alzheimer’s and vascular dementia, followed by Lewy body dementia, frontotemporal dementias, and dementia due to Parkinson’s disease. Other less common forms include alcohol-related dementia, HIV-associated dementia and dementia due to Huntington disease.
Early signs are subtle and may be hard to pick up on, even for those close to the person concerned – the person with dementia may also have trouble recognising any changes within themselves. Early features vary a great deal, and depend on the underlying brain pathology. Importantly, while memory difficulties may be the first sign, impairment to language, behaviour, or personality, and/or disruption to everyday tasks may also be an early sign.

What is the prevalence of Dementia in Australia?

In 2015, it was estimated that 342,800 Australians were living with dementia, including one in ten Australians aged 65 or over, and three in ten of those aged 85 or over. In our Aboriginal and Torres Strait communities, initial data suggests that dementia is around three to five times higher when compared with the total Australian population, equating to one in eight people over the age of 45-years.


Timely Assessment and Diagnosis

Timely diagnosis begins to enable a person living with dementia and their family to:
• adjust to the diagnosis of dementia;
• prepare for the future;
• access appropriate medical intervention;
• manage other symptoms such as behaviour and mood changes; and
• review and manage current medications.

Symptoms similar to dementia can be caused by several different diseases and conditions, some of which are treatable and reversible, including infections, thyroid imbalances, depression, medication side-effects or nutritional deficiencies. The quicker an assessment can be conducted, the sooner appropriate management and treatment can begin.

 

Dementia can be diagnosed when there is a gradual decline in cognition, behaviour and/or personality that:

• interferes with everyday function (work, social and /or domestic function); and
• represents a decline from previous levels of functioning and performing; and
• cannot be explained by an acute or chronic medical condition, neurological condition, delirium, or a major psychiatric disorder.
The evidence collected in an assessment needs to be sufficient to determine a dementia subtype (differential dementia diagnosis) to ensure appropriate treatment and management.


New England Dementia Partnership

HealthWISE New England North West, Hunter New England Local Health District (HNELHD) and HNECC PHN are building on a collaboration that dates back to 2003, to work together to improve the health outcomes and quality of life for people living with dementia, their carers and family, living in the New England North West region of NSW.

One of the biggest challenges to the provision of timely dementia diagnosis, is the time-consuming nature of the comprehensive assessments required. While General Practitioners and Medical Specialists are able to provide a diagnosis, comprehensive dementia assessments can be undertaken and supported by dementia clinicians working within HealthWISE and HNELHD. The Dementia Partnership has created a standardised referral form for these services, including in an electronic format, which will soon be provided to general practices. The dementia clinicians also provide each other with peer support and use a documented Clinical Case Discussion framework to ensure reporting back to referring General Practitioners.

Documenting this information, and the contact details of the dementia clinicians and services, has formed the basis of the Dementia Care Information booklet for clinicians and health workers, containing information specific to the New England North West region of NSW. The purpose of the document is to assist healthcare providers to recognise, assess, diagnose and manage dementia, and the electronic version of the booklet contains links to further information, templates and training opportunities. As we strive to improve the information provided to clinicians, we would appreciate any feedback, changes or suggested additions to future versions through the Contact Us tab on the HNECC PHN website.

The New England Dementia Partnership would like to thank the NSW Agency for Clinical Innovation (ACI) for seed funding from the Building Partnerships program, which aims to improve care of older people with complex health needs.

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If you have specific questions or would like more info.