- Dementia
Dementia is now referred to as a neurocognitive disorder (NCD) (American Psychiatric Association, 2013), that is, the result of chronic or progressive damage to the brain.
As people live longer, the shape of society has changed and is continuing to change; creating both benefits and challenges that humanity has not met before. One of these challenges is the increased prevalence of dementia (Productivity Commission, 2011). Dementia embodies our greatest fears: a living death; cognitive decline; lost abilities; increasing dependence; loss of the person as others know them. While acknowledging that a person with dementia and their families require complex care and support over an extended period of years, perhaps there are lessons to be learned by society about what it means to be human and the real priorities of living and dying.
Dementia in Australia
The Australian Institute of Health and Welfare (AIHW) (2012) has estimated that, in 2011, 298 000 Australians had dementia. Sixty-two per cent were women, 74% were aged 75 and over, and 70% lived in the community. Based on projections of population ageing and growth, the number of people with dementia will reach almost 400 000 by 2020 and 900 000 by 2050. However, it is not only the total number of people with the disease that causes concern because that number is, on the whole, in line with the projected growth of the total population. Dementia causes concern because it comes with an increased burden of disease and disability.
The disability-adjusted life year (DALY) is a measure of overall burden of disease and is expressed as the number of years lost due to premature death and/or ill health, disability or injury. Premature death is a social and economic loss because that person can no longer participate and contribute to society and is measured in years of life lost (YLL). When a person’s participation and contribution to society is limited through disease, disability or injury, or years of life lost due to disability (YLD), there is a cost to society for their care and assistance required. For people aged 65 or more, ischaemic heart disease is the leading cause of burden of disease. Approximately 75% of the burden is caused by YLL and 25% by YLD. Dementia is the second leading cause of overall burden of disease with approximately 75% comprising YLD, thus making it the leading cause of disability burden (AIHW, 2012).
Dementia is both a chronic and terminal condition. People with dementia also have, on average, more concomitant health conditions. Therefore, people with dementia and their families rely heavily on health and aged care services. People who identify as Aboriginal and Torres Strait Islander, or are from culturally and linguistically diverse backgrounds, or other special needs groups, are under-represented in numbers of people who access services. Fifty-three per cent of people living with dementia reside in the community and place a substantial demand on informal carers – for example, family, friends and neighbours – some providing as much as 40 hours of care per week (AIHW, 2012).
- Aged care services
The Australian government subsidises many different types of aged care services to help people stay at home. They are there to help people stay as independent as they can through a system that provides fair and equitable access to services for all older people living in Australia.
Special needs groups
Australian culture and lifestyles reflect great diversity. The non-health needs and preferences of some older Australians can be very different from those who live in the mainstream. Many have experienced stigma as a consequence of their identity or preferred lifestyle. The Aged Care Act 1997 specifies that people who identify as Aboriginal and Torres Strait Islander, are culturally and linguistically diverse, are living in remote or rural communities, and are financially and socially disadvantaged have special care needs to be addressed. In addition, the Allocation Principles 1997, associated with the Act, identified veterans, the homeless and people brought up in care as also having special needs. Other groups with needs that differ in certain ways but not specifically identified in legislation include people with a disability who cannot live independently in the community; ageing people with physical and/or mental disabilities; older gay, lesbian, bisexual, transgender and intersex people; and older refugees (Productivity Commission, 2011). For each of these specifically identified groups, and any other minority group, the experience of dementia can be more complicated. Consideration of the person’s cultural background, gender, race, ethnicity, religious belief, disability, social and family considerations, other medical conditions, and the availability of services all need to be taken into consideration for each individual.
- Culture
The main definition of culture used in this book is: ‘Culture is all aspects of life, the totality of meanings, ideas and beliefs shared by individuals within a group of people. Culture is learned, it includes language, values, norms, customs.’ (http://www.design.iastate.edu/NAB/about/thinkingskills/cultural_context/cultural.html).
What is a neurocognitive disorder?
Dementia, now referred to as a neurocognitive disorder (American Psychiatric Association (APA), 2013), is the result of chronic or progressive damage to the brain. It is the changed and changing behaviour and actions, such as communication difficulties, memory loss, mood and difficulties completing everyday tasks, that provide the external evidence for the altered brain physiology. In the beginning the changes of behaviour are often subtle and insidious in nature and easily ignored or explained away as a normal part of ageing, or a reflection of the person’s personality, or a natural reaction to stress or changed circumstances. It is, therefore, virtually impossible to determine when the disease begins.
- Communication
An exchange of information between individuals using speech, visual aids, body language, writing or behaviour.
Major neurocognitive disorder (NCD) is a syndrome, that is, a cluster of symptoms which when seen together indicate changes in the brain but each symptom can have many causes. It is an umbrella term to describe a collection of disease processes that cause different sequences of brain damage, and variations in appearance and severity of symptoms (APA, 2013). So not only can each sign or symptom be caused by something other than a neurocognitive deficit, for example, vision loss or lack of sleep, but the NCD can have many differing causes, for example, Lewy Body disease or Alzheimer’s disease. This can make diagnosis difficult as there are currently no easily tested biomarkers to confirm a diagnosis. Rather it is generally based on elimination of other possible causes of the behavioural changes, such as delirium, depression, physical ill health or medication side effects. Brain imaging may prove helpful, if feasible (Buntinx et al., 2011; Brodaty et al., 2013).
- Neurocognitive disorder (NCD)
Neurocognitive disorder is an umbrella term to describe a collection of disease processes that cause different sequences of brain damage, and variations in appearance and severity of symptoms (American Psychiatric Association, 2013).
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