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The Risk Watch Column
By Dr Alan Waring
Seemingly from nowhere, a medical epidemic with horrendous ramifications for individuals, families, societies, economies and governments has descended with lightning stealth upon the world. Organic Brain Syndrome is the generic name for a collection of conditions, which includes those where the brain tissue shrinks and/or is starved of oxygen, resulting in memory loss, impaired faculties and functioning, mood swings and often bizarre and aggressive behaviour. Alzheimer’s Disease is the most prevalent. Typically, victims are aged 65 or more but a minority are younger. For brevity, I will use the general term ‘senile dementia’. As life expectancy continues to increase, the numbers of people suffering from dementia will also inevitably rise.
Some Alarming Data
The terrible affliction of dementia is likely to affect up to 1 in 4 people in their mid-late 70s and 1 in 2 of those aged 85 or more. Prof Ron Brookmeyer, an authority on the epidemiology of senile dementia, stated in 2007 that ‘We are facing a looming global epidemic of Alzheimer’s Disease as the world’s population ages.’
The growing cost burden and future projected costs of senile dementia are now causing governments concern. The World Alzheimer Report for 2010 (Alzheimer’s Disease International) included in its highlights the following thought-provoking cost statistics:
• The total estimated worldwide costs of dementia are US$604billion in 2010. By 2030, these costs will increase by 85%.
• If dementia were a country, it would be the world’s 18th largest economy, ranking between Turkey and Indonesia. If it were a company, it would be the world’s largest by annual revenue, exceeding Wal-Mart (US$414billion) and Exxon Mobil (US$311billion).
• Costs of informal care (unpaid care provided by families and others) and the direct costs of social care (provided by community care professionals and in residential care homes) each contribute similar proportions (42%) of total costs worldwide, while direct medical costs are much lower at 16%.
Impact on Families and Carers
Despite assistance from health care systems in many countries, the victim’s spouse and younger family members are often left to cope as best they can with the enormity of the disease and its many manifestations and consequences. It is often an exhausting and traumatic experience for the family. A lengthy period of degeneration before death is typical, which may extend for many years.
The Alzheimer’s Research Trust’s Dementia 2010 report notes the burden shouldered by informal carers: “Amongst all carers, the carers of people with dementia are one of the most vulnerable, suffering from high levels of burden and mental distress, depression, guilt and psychological problems. The behavioural and psychological symptoms of dementia patients, such as aggression, agitation and anxiety, are particularly difficult for carers and are a common cause for institutionalization of dementia patients in care homes. It is therefore well recognized that dementia has a significant economic impact on the health care system, on patients, on family and friends who provide unpaid care, and on the wide economy and society”.
Senile Dementia in Cyprus
Cyprus is affected by the same upward trend in senile dementia numbers as in other EU countries. According to Dr Christos Patsalides, the Cyprus Health Minister, some 14,000 people aged over 60 suffer from varying kinds of dementia, including 9,500 who have Alzheimer’s disease. In January 2010, he agreed to the need for a Cyprus Strategic Plan for Alzheimer’s Disease which will address the following key issues:
• To improve public and professional awareness about the disease for earlier diagnosis and intervention as well as a way to eliminate the social stigma.
• To upgrade further existing capabilities for early diagnosis and intervention, through joint efforts of various health professionals of private and public sectors.
• To plan for the provision of higher quality primary, secondary and tertiary health care for dementia patients as well as the provision of good quality information, professional support and advice for those diagnosed with the disease and their carers.
• To develop a supportive social network for patients and their carers, at home, in the community as well as in special care homes.
However, when Alzheimer Europe last conducted a survey of dementia facilities in Cyprus it reported only a single sentence: “Alzheimer Europe was unable to obtain sufficient information to describe the organization of home care in Cyprus”. This lack of information is almost certainly because no such organisation yet exists. One small organisation, the PanCyprian Alzheimer’s Association, does exist but appears to focus on policy and research rather than practical support for victims and carers. There is as yet no evidence of implementation of the noble words of the Cyprus Strategic Plan for Alzheimer’s.
The Thraki Rossidou Jones Case
An especially appalling case that the Strategic Plan was designed to prevent concerns that of the celebrated Cypriot artist Thraki Rossidou Jones. Once regarded as a national treasure and fêted by Cypriot Presidents and foreign governments, when she developed signs and symptoms of dementia she was in effect abandoned and rejected by the Cypriot state health care system. The catalogue of shocking abuses, medical and administrative, heaped on her and her close family carers over several years are too numerous to discuss here but a forthcoming book will reveal all. The hospital involved is now the subject of a civil action for medical negligence after Thraki was asphyxiated.
Health authorities regard senile dementia not as a medical condition but as a social problem for which they have no responsibility and any relative who dares say otherwise is an uppity troublemaker who has to be slapped down. This belief then ‘justifies’ the authorities keeping patients such as Thraki away from proper medical care. The belief that dementia is primarily a social problem feeds on a longstanding view in Cyprus, specifically challenged by the Cyprus Alzheimer’s Strategic Plan, that dementia is shameful and stigmatized, to be hidden away and ignored.
The State’s Responsibility
How we as individuals and as societies treat our elderly citizens who suffer from dementia is surely a test of our right to claim to be civilized. Our state health care institutions bear the primary responsibility for delivering an adequate response to the epidemic. Health authorities and the medical professions at every level should not regard dementia sufferers as hopeless, incurable cases who burden the health care system and who therefore should be treated reluctantly, if at all, in the hope that the patient will have one final stroke and die. Hospitals should not refuse to conduct proper psychiatric assessments and then deny admission to clearly ill dementia sufferers on the dubious grounds that the patient is not really ill and just needs to be looked after at home by his or her family. This is an archaic attitude in the 21st century.
Unfortunately, the Health Minister’s well meaning words and his Strategic Plan for Alzheimer’s all came too late for Thraki Rossidou Jones. Moreover, the long awaited National Health Service remains an idea in Cyprus, the only EU member state not to have an NHS. In the balance of risks, it is certainly costly to establish and run a National Health Service and an adequate Alzheimer’s Strategy; however, it is even costlier not to.
Dr Alan Waring is an international risk management consultant with extensive experience in Europe, Asia and the Middle East with industrial, commercial and governmental clients. He is a Fellow of the Institute of Risk Management and a Fellow of the Royal Society for Public Health and spent several years on studies in the UK National Health Service. Contact [email protected] .
©2011 Alan Waring
