Dementia is not a specific disease; it is the term used to describe a collection of symptoms that are caused by disorders affecting the brain. Dementia is characterised by widespread impairment of mental function, decline in activities of daily living, and impaired social function. This means thinking, memory, communication, emotions, and other functions of the brain get worse over time, and cannot be cured. Most people with dementia will eventually require assistance to perform even simple tasks.
Memory loss, both short-term and long-term, is a main symptom of dementia. Short-term memory is usually affected more than long-term memory. Long-term memory is usually affected in the later stages of dementia.
There are more than 60 different types of dementia. Some of the common forms of dementia are: Alzheimer’s disease; vascular dementia; and Korsakoff’s (alcohol-related) dementia. It is possible for a person to have more than one type of dementia (for example, alcohol-related dementia and vascular dementia).
As well as these forms of dementia, for which there are no cures currently, some people develop dementia that can be at least partly reversed. The conditions contributing to reversible dementia include: dehydration; constipation; infection; vitamin imbalance; pain; medication poisoning; brain tumours; and depression.
Reflecting the various types of dementia, there is a range of factors contributing to its development:
Assessment of dementia consists of:
The treatment of dementia varies according to the type of dementia. The treatment of reversible dementia focuses on the specific cause (for example, reversal of dehydration or treatment of an infection).
Unfortunately, many types of dementia are not reversible. In these cases, it’s important to understand how the brain is damaged, which part of the brain is affected and how the disease may progress, so you can explain this to the person with dementia, their carer or families. Understanding which part of the brain is damaged will also help with understanding symptoms.
For irreversible forms of dementia, treatment focuses on the symptoms. This relates mainly to drugs that improve mental functioning and/or treat things like depression and anxiety.
Until very recently, there was minimal attention to and research about dementia in Aboriginal and Torres Strait Islander communities. This has had major implications for the provision of appropriate services.
In 2006, Alzheimer's Australia initiated a consultation process with a diverse range of people involved in caring for Indigenous people with dementia. The information from this process is outlined with the Beginning the conversation report (see Sources and further reading).
A year previously, dementia had been recognised as a National Health Priority. This recognition provided the focus for collaboration between the Australian and state and territory governments and other organisations to improve the quality of life and care for people living with dementia.
One of the main questions asked at the 2006 workshop was whether dementia was a priority in Indigenous communities. Participants noted the relative lack of data about dementia among Indigenous people, but, in recognition of the poor outcomes for Indigenous people across many areas, queried whether dementia was a priority.
After reviewing some preliminary prevalence data coming out of the Kimberley region of Western Australia (see below), participants acknowledged that dementia was an important issue that should be addressed and resourced. It was agreed that work addressing dementia among Indigenous people should be guided by six ‘action points’:
As a part of its efforts to improve dementia services and support for Indigenous communities, Alzheimer's Australia established a National Aboriginal and Torres Strait Islander Dementia Advisory Group (NATSIDAG).
The full extent of dementia among Indigenous people is not known, but preliminary data from the Kimberley region of Western Australia suggest that around one-in-eight (12.4%) Indigenous people aged 45 years or older are affected. This means that dementia is almost five times more common among this Indigenous population than among the total Australian population, for which around one-in-forty (2.6%) are affected.
The risk factors identified in the Kimberley study were, age, male gender, previous stroke, head injury and low education.
As is the case for non-Indigenous people, the accurate assessment of dementia among Indigenous people is essential in reaching the correct diagnosis, so that appropriate treatment can be provided.
Gaining early and accurate diagnosis for Aboriginal and Torres Strait Islander people has been problematic, however, due to a number of reasons. These include: lack of culturally appropriate cognitive assessment tools; reduced access to specialised investigations; and other barriers.
Due to the diversity of Aboriginal and Torres Strait Islander cultures across Australia appropriate and accepted cognitive assessment tools needs to be trialled and validated so that the assessment process takes into account cultural and language differences.
The Kimberley Indigenous Cognitive Assessment (KICA) tool has been developed to take into account language and cultural diversity of Aboriginal and Torres Strait Islander people living in rural and remote communities across northern Australia (north Western Australia, Northern Territory, Cape York and Torres Strait Islands).
The KICA assessment tool alone doesn’t diagnose dementia. But, if it suggests cognitive impairment, more detailed investigation by doctor and/or referral to specialist is needed.
The KICA assessment tool is currently being trialled in urban and rural Indigenous populations in New South Wales as a part of the Koori Growing Old Well Study (KGOWS); this study is also examining risk and protective factors for dementia.
Alzheimer's Australia (2007) Dementia: a major health problem for Indigenous people: briefing prepared for Parliamentary Friends of Dementia. Canberra: Alzheimer's Australia
Alzheimer's Australia (2005) Tests used in diagnosing dementia. Retrieved 9 May 2011 from http://www.alzheimers.org.au/understanding-dementia/tests-used-in-diagnosing-dementia.aspx
Alzheimer's Australia (2005) Types of dementia. Retrieved 9 May 2011 from http://www.alzheimers.org.au/understanding-dementia/types-of-dementia.aspx
Alzheimer's Australia (2005) What is dementia? Retrieved 9 May 2011 from http://www.alzheimers.org.au/understanding-dementia/what-is-dementia.aspx
Dementia Care Australia (2011) What is dementia? Retrieved 9 May 2011 from http://www.dementiacareaustralia.com/library/what-is-dementia.html
Alzheimer's Australia (2006) Beginning the conversation: addressing dementia in Aboriginal and Torres Strait Islander communities: workshop report, 8-9 November 2006, Adelaide. Hawker, ACT: Alzheimer's Australia
Arkles RS, Jackson Pulver LR, Robertson H, Draper B, Chalkley S, et al. (2010) Ageing, cognition and dementia in Australian Aboriginal and Torres Strait Islander peoples: a life cycle approach. Sydney: Neuroscience Research Australia and Muru Marri Indigenous Health Unit, University of New South Wales
Garvey G, Simmonds D, Clements V, O'Rourke P, Sullivan K, et al. (2011) Making sense of dementia: understanding among Indigenous Australians. International Journal of Geriatric Psychiatry;26(6):649–656
Lindeman M, Smith K, LoGiudice D, Shadforth G, Carroll E, et al. (2010) Model of care for people living with dementia and disabilities in remote Aboriginal communities. Presented at 2010 PHC Research Conference: Primary health care research and health reform: Improving care 30 June-2 July 2010, Darwin
Living Black, SBS (2009) Lost memories. Accessed May 2011 at: http://news.sbs.com.au/livingblack/lost_memories_563601
Logiudice D (2008) Dementia in remote Indigenous communities. Presented at 3rd NARI Biennial Seminar: the challenge of dementia: what has been achieved and what remains to be done? 7th November 2008, South Melbourne
LoGiudice D, Smith K, Thomas J, Lautenschlager NT, Almeida OP, et al. (2006) Kimberley Indigenous Cognitive Assessment tool (KICA): development of a cognitive assessment tool for older Indigenous Australians. International Psychogeriatrics;18(2):269-280
LoGiudice D, Strivens E, Smith K, Stevenson M, Atkinson D, et al. (2011) The KICA screen: the psychometric properties of a shortened version of the KICA (Kimberley Indigenous Cognitive Assessment). Australasian Journal on Ageing; Early View (http://dx.doi.org/10.1111/j.1741-6612.2010.00486.x)
Smith K, Flicker L, Dwyer A, Atkinson D, Almeida OP, et al. (2010) Factors associated with dementia in Aboriginal Australians. Australian and New Zealand Journal of Psychiatry;44(10):888–893
Smith K, Flicker L, Dwyer A, Marsh G, Mahajani S, et al. (2009) Assessing cognitive impairment in Indigenous Australians: Re-evaluation of the Kimberley Indigenous Cognitive Assessment in Western Australia and the Northern Territory. Australian Psychologist;44(1):54-61
Smith K, Flicker L, Lautenschlager NT, Almeida OP, Atkinson D, et al. (2008) High prevalence of dementia and cognitive impairment in Indigenous Australians. Neurology;71(19):1470-1473
Smith K, LoGiudice D, Dwyer A, Thomas J, Flicker L, et al. (2007) ‘Ngana minyarti? What is this?’ Development of cognitive questions for the Kimberley Indigenous Cognitive Assessment. Australasian Journal on Ageing;26(3):115-119
Alzheimer's Australia (2007) Dementia learning resource for Aboriginal and Torres Strait Islander communities.
This kit of resources and materials is designed to be used for preparation and delivery of dementia awareness raising and information sessions, as well as educational and training programs, specifically for Aboriginal and Torres Strait Islander communities.
The resource’s facilitators guide, student handbook, and assessment items are aligned to nationally accredited Units of Competency: CHCAC319A Provide support to those affected by dementia; CHCAC416A Facilitate support responsive to the specific nature of dementia; and HLTIR404B Work effectively with Aboriginal and Torres Strait Islander People.
Resource accessible at: http://www.alzheimers.org.au/understanding-dementia/dementia-learning-resource-for-aboriginal-and-torres-strait-islander-communities.aspx
Alzheimer's Australia (2007) Looking out for dementia.
This suite of themed resources has been developed to inform Indigenous people living in remote communities of Northern Territory about dementia The resources have been developed in English and three Indigenous languages; Djambarrapuyngu, Warlpiri and Kriol.
Resource accessible at: http://www.alzheimers.org.au/northern-territory/looking-out-for-dementia.aspx
An evaluation of the resource is accessible at: http://www.alzheimers.org.au/northern-territory/evaluation-of-a-dementia-awareness-resource.aspx