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DonateThe McCusker Foundation for Alzheimers Disease Research
a world free of
Alzheimer’s disease
184 Hampden Rd,
Nedlands, WA 6009.
Telephone: (08) 9347 4200
Facsimile: (08) 9347 4299
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About Alzheimer's
What is Alzheimer's Disease?
Alzheimer’s disease is a form of dementia. There are many forms of dementia of which Alzheimer’s is the most common representing between 50% to 70% of all incidences of dementia (Access Economics Report, March 2003, "The Dementia Epidemic: Economic Impact and Positive Solutions for Australia".
Alzheimer's disease (AD) is a progressive, degenerative neurological condition caused by nerve cell death resulting in atrophy of the brain. It is a condition often associated with older persons but it also affects younger people. The progression of dementia over many years is often categorised as mild (early stage), moderate (middle stage) and severe or advanced (late stage), before the person dies. It results in increasing levels of disability requiring progressively higher levels of care to carry out activities required for day to day living and it can also result in changes in behaviour. There are currently no treatments that stop the progression of the condition.
AD is associated with neurofibrillary tangles within the nerve cell body and abnormal (senile) plaque deposits between nerve cells, containing the protein beta amyloid (Aâ).
Alois Alzheimer, a German psychiatrist and pathologist, first published his findings on these ‘tangles and plaques’ in 1907. They occur consistently in people with AD and, interestingly, have also been observed in older people free from dementia. The ‘tangles and plaques’ disrupt normal electrical conduction of messages within the brain. A nerve cell chemical acetylcholine is also deficient in AD.
AD primarily affects the Cerebral Cortex, Basal Forebrain and Hippocampus areas of the brain.
Current Understanding of Causes
As already noted, neurofibrillary tangles and plaque deposits containing the protein beta amyloid characterize the Alzheimer affected brain and are considered to be causes of the condition.
Neurofibrillary tangles within the nerve cell body. (information to be provided)
Abnormal (senile) plaque deposits between nerve cells, containing the protein beta amyloid (Aâ). Research has significantly increased our understanding of the abnormal processing of beta amyloid which results in its accumulation in the brain and how this results in cell death.
(Information being updated)
Symptoms of Alzheimer's include:
gradual memory loss;
decline in ability to perform routine tasks;
disorientation to time and space;
impaired judgement, abstract thinking and physical coordination;
difficulty in learning and concentration;
loss of language and communication skills;
changes in personality, behaviour and mood (up to two thirds of people with AD have depressive symptoms and about 20% exhibit aggression, more common in men);
hallucinations (experienced by 16%) and delusions (false beliefs), often paranoid (30%);
loss of initiative; and
altered sleep patterns, eating disturbances and screaming.
Cummings J (2001) “Treatment of Alzheimer's disease” Clin. Cornerstone 3(4), 27-39, lists the prevalence of neuropsychiatric symptoms that commonly accompany AD as agitation (60% to 70% of people), apathy (60% to 70%), depression (50%), anxiety (50%), irritability (50%), delusional disorders and psychosis (40% to 50%), disinhibition (30%) and hallucinations (10%).
Progression of Alzheimer's
The onset of AD is variable, with some developing the conditions as early as 30 years of age. The disease lasts from 3-20 years (an average of 8) from diagnosis. The average length of time from diagnosis may be increasing as people present earlier and are diagnosed. The first phase which typically lasts three to four years and represents about 30% of diagnosed cases, is characterised by mild symptoms of memory loss and disorientation requiring some assistance and surveillance. As the disease progresses, more difficulties with daily functioning occur and assistance with daily living is increasingly required. Moderate disease occurs in a further 40% of diagnosed AD cases. In the final years the disease is severe (the remaining 30% of diagnosed cases), with communication and movement problems and incontinence requiring high levels of specialised care, often in a nursing home setting (Access Economics Report [March 2003] “The Dementia Epidemic: Economic Impact and Positive Solutions for Australia). Death is often attributable to pneumonia or other infections.
Diagnosis of Alzheimer's
There are as yet no identified biological markers for dementia. Currently a diagnosis is made, based upon clinical observations and testing of cognitive capacity and memory loss. Additional testing is also required to rule out other conditions that have similar symptoms such as depression. As the diagnosis has to be based upon observable characteristics, it can only be diagnosed once the condition has progressed and considerable neurological damage has already occurred.
At this stage a confirmed diagnosis of AD can only be achieved through post mortem identification of the neurofibrillary tangles and / or abnormal plaque deposits on the brain known to be associated with AD.
Scanning technology such as magnetic resonance imaging (MRI), computed tomography (CT) and positron emission tomography (PET) can reveal atrophy of the brain and are being studied as to their efficacy in identifying evidence of amyloid plaque build up and the relationship of this build up to the progression of AD.
Genetic testing is another area being studied. Though this is unlikely to become a means of diagnosis on its own, current evidence indicates it has potential as an early indicator of risk.
Differential diagnosis and assessment by a specialist is important, in particular for distinguishing AD from “normal” memory and cognitive impairment of ageing, and from other types of dementia and other disorders such as delirium and major depression.
There is some evidence to indicate that GPs are cautious about making a diagnosis of AD. A survey of 281 GPs in the UK found that only 39% would inform their patients of a diagnosis of dementia, compared to 95% who would inform them of a diagnosis of terminal cancer (Black et al, (2001) Diagnosing Dementia: a reference paper, Alzheimer’s Australia, September 2001). Reasons for not telling include emotional distress and other negative impacts for the person and their family, fear of incorrect diagnosis, a judgment that there is no benefit in the person knowing, or a request from the family or carer not to tell.
There is no evidence however that informing the person is detrimental. On the contrary information may assist future planning and the development of strategies for managing the illness and associated disability. It would also facilitate access to services including medical treatments and community services, and assist families, carers and others to understand what is happening.
Treatments for Alzheimer's disease
There is currently no effective treatment for Alzheimer’s disease.
There are some drugs in use that may temporarily reduce symptoms. However, there is currently no known drug to stop the progression of Alzheimer’s disease. Through our research we are however, gaining an increasing understanding of physiological and genetic influences as well as lifestyle factors associated with the onset of AD
Research is significantly enhancing our understanding of AD and we are now aware of a number of mechanisms implicated in the body developing abnormal levels of beta amyloid in the blood and its deposition on the brain.
We have found that hormonal changes that are associated with ageing have also been implicated in the increased risk of developing Alzheimer's disease. As a result we are currently exploring if the control of the levels of these hormones can be a therapeutic strategy for treating this disease.
In another study we aim to assess the ability of certain drugs (that are also used in trials to manage artheroschlerosis) to reduce the levels of beta amyloid and oxidative stress in brains of mice. This project will determine whether this inhibitor has value as a therapeutic agent for AD.
The role of diet as an environmental factor associated with AD is also becoming well known. In particular, indications that a low dietary intake of omega-3 essential fatty acids (Fish Oils) and certain nutritional supplements could also be possible risk factors for AD. If our trials with these are successful, they have the advantage of being able to progress rapidly to clinical trials as they are already known as safe foods.
Prevention of Alzheimer's
There is currently no know way to prevent Alzheimer's Disease.
We urgently need to develop an effective treatment to minimise the enormous impact Alzheimer’s disease will have on the nation’s health, quality of life and economy in the coming years.
It can no longer be ignored that dementia, of which Alzheimer’s disease comprises about 70 per cent of all cases, is a major and growing public health issue. Only urgent significant investment in research can deliver the preventative measures or effective treatments needed to halt this looming crisis.
Dementia is more common than skin cancer, yet with significantly less investment in public health initiatives and research.
Incidence of Alzheimer's disease
The Access Economics Report [March 2003] “The Dementia Epidemic: Economic Impact and Positive Solutions for Australia” reported that:
In 2005 the number of Australians with dementia passed the 200,000 mark (and reach 1.0% of the population).
By 2050, the total number will exceed 730,000 (2.8% of the projected population) – a fourfold increase since 2000.
In 2005 there were nearly 52,000 Australians newly diagnosed with dementia.
By 2050, there are projected to be over 175,000 new cases every year, more than the total number of people with dementia in Australia in 2000.
Their further report in 2005 – “Dementia estimates and projections: Western. Australia and its regions” presented the following stark prevalence and incidence statistics.
In 2004 there were over 17,000 Western Australians with dementia.
Growth of dementia in WA is the third fastest in Australia, after the Northern Territory and Queensland.
By mid-century, the number of Western Australians with dementia is projected to increase to over 79,000, 5.5 times the number of those with dementia in WA in 2000.
Consequently, the proportion of Australians with dementia that live in WA is projected to increase from 8.5% to 10.8%.
To put it another way as a proportion of Western Australia’s population, the number of people with dementia is projected to increase from 0.8% in 2002 to 2.7% in 2050;
Around 80% of people with dementia in WA live in metropolitan areas. Growth rates, however, are generally slightly higher in the regional areas.
Socio Economic impact of Alzheimer's disease
Dementia is a major factor in the structural ageing of the population, the costs of which are estimated to exceed revenue within 15 years, leading to a deficit equal to 5 per cent of GDP (or $87 billion in today’s dollars) by 2041-42, if no action is taken.
The following information is taken from Access Economics Report [March 2003] “The Dementia Epidemic: Economic Impact and Positive Solutions for Australia".
In Australia, dementia already costs $6.6 billion - $5.6bn in real economic costs and $1bn in transfer costs.
Direct health costs: Dementia is the most expensive mental health item in Australia, costing $3.2 billion in 2002, dominated by residential care costs ($2.9 billion). By the end of the decade, these costs will nearly double. In addition, home and community care costs are also rising steeply; currently $175m of
Real indirect costs: These are dominated by carer costs ($1.7 billion) valued at replacement cost, together with the lost earnings and mortality burden of patients ($364m) and the cost of aids and home modifications ($120m).
Transfer costs: $592m of tax is foregone each year for people with dementia and their families and carers. Carer payments represent another $324m, while additional welfare payments total $52m.
By mid-century, dementia costs may exceed 3% of GDP, from nearly 1% today.
The socio-economic and disability burden of dementia is severe.
98.5% of people with dementia are disabled and use medical services more than the age-average.
People with dementia have lower than average incomes and are under-represented in the workforce – 2.3% compared to the Australian average of 8.5% for people over age 65.
Dementia costs over 117,000 years of healthy life (disability adjusted life years or DALYs) in 2002, and severe dementia has the highest disability weight of all conditions, equal with severe rheumatoid arthritis and higher than terminal stage cancer.
Dementia is the second largest cause of disability burden in Australia after depression, and will become the largest by 2016, continuing to outpace other chronic illnesses.
The opportunity cost of lost employment has been estimated at $355 million. This will increase significantly with the rising incidence of Alzheimer’s disease.
Dementia costs more over more years than any other national health priority area.
There is some evidence to suggest that AD is under-diagnosed and under-reported. A survey of 281 General Practitioners in the UK found that only 39% would inform their patients of a diagnosis of dementia, compared to 95% who would inform them of a diagnosis of terminal cancer (Black et al, 2001). The fact that incidence may be considerably higher than estimated underscores the urgent need for well-funded research to find ways to halt this looming crisis.
In addition it is highly probable that there will be major increases in incidence among certain genetically predisposed groups - indigenous people and those with Down’s syndrome –as gains in health increase their longevity.
Importance of Research
Research into AD in Australia is under funded relative to the current and projected costs and the scope for huge savings from investment in research for cause, prevention and care.
Access Economics in their 2003 report estimates that $1 is spent on research for each $342 of the total costs of dementia (0.29%). Though this has changed somewhat with recent Government initiatives aimed at issues related to an ageing population, there remains a need for a significant resources focused on medical research into AD. In addition Access Economics recommends that:
Dementia should be a national health priority and the funding of dementia research should form an essential part of the government’s response to the dementia epidemic, as well as forming part of a more general reprioritisation of health research resources on the basis of projected prevalence, costs and disease burden. In view of Australia’s international comparative advantages in health research investment, as well as the potentially enormous cost-effective returns (potentially saving up to $4 trillion in Australia in long term health costs), urgent action should be taken to substantially boost the level of research funding for dementia.
Research should be directed towards:
Understanding of the biomedical causes of dementia, including:
epidemiological (population based) medical risk factors and public health research;
Identifying treatments that prevent or postpone the onset of dementia, or that slow or reverse disease progression;
Effective models of care (best clinical practice) for people with dementia, including ways to enhance primary care, dementia services (as per Section 3.2.5) and effectiveness of training interventions.
Identifying means of preventing the condition as the most efficacious means of alleviating the looming crisis that will be caused by the massive increases in incidence of AD. is imperative.
Identifying means of early intervention as the effectiveness of any treatments will be limited by the current inability to diagnose AD until significant neurological damage has already been sustained.
Carer's tips
The diagnosis of Alzheimer's Disease is a shock to the individual, their family and their friends. Often people do not know what will happen next, how it will impact on them and how they can manage through the challenges they face.
One organisation that offers practical support to individuals, families and friends is the Alzheimer's Australia WA association. Click on the link below to visit their initial carer's page.
Click on this link to view the initial carer's page.
Summary
Australia needs to move towards a more positive public awareness of dementia, encouraging the community to view this disabling condition with more optimism and hope. We still have further to go in understanding its causes and best treatment practices. However significant progress has been made. The rate of research and discoveries is increasing and it is only a matter of time before significant treatments and preventative strategies are discovered. We already have considerable understanding of the genetic influences and of lifestyle factors that can be used to assist a person defer the onset of the condition. This understanding will be increasingly built upon in the coming years.