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The Alzheimer’s Disease International (ADI) group has recenty published their 2009 report (ADI 2009).

It provides an overview and analysis of the current worldwide situation and offers predictions for the future. This report is particularly pertinent given the recent launch of the National Dementia Strategy in the UK and it also provides up-to-date information regarding financial and research aspects of dementia in the UK.

The dementia ‘epidemic’
With a new case of dementia in the world every seven seconds, this report highlights the growing need to prioritise dementia care. There will be an estimated 35.6 million people with dementia worldwide in 2010, compared with 24.2 million in 2001, expanding to 65.7 million by 2030 and 115.4 million by 2050. It is thought the majority of this growth will come from low and middle income countries.

ADI Recommendations from the World Alzheimer Report 2009
The salient recommendations from the report include:

1. The World Health Organisation (WHO) should declare dementia a world health priority.

2. National governments should declare dementia a health priority and develop national strategies to provide services and support for people with dementia and their families.

3. High income countries should develop national dementia action plans with designated resource allocations.

4. Develop services that reflect the progressive nature of dementia.

5. Distribute services with the core principle of maximising coverage and ensuring equity of access, to benefit people with dementia regardless of age, gender, wealth, disability, and rural or urban residence.

6. More research needs to be funded and conducted into the causes of Alzheimer’s disease and other dementias, pharmacological and psychosocial treatments, the prevalence and impact of dementia, and the prevention of dementia.

Overview of the research
In low and middle income countries in particular, there is a general lack of awareness of dementia, with it being perceived as a normal part of ageing. This has contributed to the lack of pressure on government and policy makers with a subsequent deficit in spending and research.
Even in the UK, as highlighted by the National Dementia Strategy, there prevails ‘two false beliefs’ within society (that dementia is a normal part of ageing and that nothing can be done). In the UK only 31 per cent of primary care doctors believe they have received adequate training to diagnose and manage dementia and the sufferer tends to present on average three years after the onset of their symptoms, partly because 58 per cent of caregivers believe the symptoms to be a ‘normal part of ageing.’

Since The Lancet published its dementia prevalence estimates in 2005 (Ferri et al., 2005) with a projection of over 80 million sufferers globally by 2040, many previously under represented regions have released studies allowing for more accurate predictions to be made. Of the 21 Global Burden of Disease (GBI) regions represented, 11 were suitable for meta-analysis. Direct comparison revealed a four-fold variation in prevalence, ranging from 2.07 per cent in West Sub-Saharan Africa to 8.5 per cent in Latin America. The majority of national prevalence rates lie between 5 and 7 per cent. These updated estimates are approximately 10 per cent higher than predicted in 2005 by The Lancet.

When considering Dementia prevalence by world regions, low and middle income countries are predicted to show a more rapid increase than high income countries, for example, over the next 20 years, this ranges from a predicted rise of 40 per cent in Europe compared to 125 per cent in North Africa and the Middle East.

Relationships between Alzheimer’s and other dementias and mortality and morbidity
The relative risk of death when diagnosed with dementia is 2.63, rising to as much as 5.16 (Nitrini et al., 2005) in low and middle income countries. In general, the more severe the dementia, the higher this relative risk becomes.

As many as 75 per cent or more of nursing home residents have dementia, and 33-50 per cent of those in residential care. When compared to other chronic health conditions, cognitive impairment is by far the strongest predictor of institutionalisation in high income countries, but in low and middle income countries, residential care is often unavailable.

Adding years to life and life to years
It is sometimes difficult to compare the impact of dementia directly with, say, cardiovascular disease where intervention/prevention may add years to life, whereas in dementia, intervention/ prevention can be seen to add ‘life to years.’ The NHS spends an estimated £4.3 billion annually on treating coronary heart disease, £2.1 billion on cancer care, £2.1 billion on stroke, but only £1.4 billion on treating dementia.

More striking is the imbalance of spend on research. In the USA, an estimated $5.6 billion is spent on cancer research, $2.3 billion on cardiovascular disease but only $0.4 billion on dementia.

When considering the available research publications over the past 10 years, it may therefore not be too surprising to find that only 44,168 research publications were identifiable with regard to dementia compared with 701,876 relating to cancer, or 476,487 relating to heart disease. The upshot of this is that the more disabling the disease, the less it has been researched, whereas the greater the disease’s contribution to mortality, the more it has been researched.

Global cost of dementia
The global cost of dementia is estimated at $315 billion per year, with 72 per cent of this cost coming from high income countries. It can be broken down into direct cost and that arising from informal care. There are significantly more informal care costs in low income countries as a result of there being limited formal services in these countries. The estimated annual cost per person in high income countries is $17,964 compared to just $1,521 in low income countries. Dementia care costs are rising fast in low and middle income countries.

Caregiving
Reliability and universality of the family care system is often overestimated in developing countries but the norm is for a sufferer to live with a larger family unit. The average caregiver time, including general supervision is 7.4 hours per day and most caregivers are women. In contrast with developing countries, in Europe, 85 per cent of couples where one has dementia, lived on their own.

Caregivers of people with dementia often experience high levels of psychological morbidity, with only 13 per cent from a Canadian sample reporting either fulfilment or enjoyment as part of their caregiving role (Cohen et al., 2002). In the USA, over 40 per cent of unpaid caregivers rate the level of emotional stress of caregiving as high or very high. Despite the often larger immediate support network in low and middle income countries, caregiver strain remains similarly high when compared with high income countries with levels of major depressive disorder estimated to be as high as 30 per cent among caregivers.

From recognition to action
The ADI has developed a 7-stage process for implementing dementia services, with a graduated approach recommended for poorly resourced countries. Raising awareness and understanding is an important first step in service development because when awareness is raised, expectations will also be raised. Primary healthcare workers can reduce carer stress by providing information and advice on caregiving.

Conclusions
This report constitutes the best available estimates for basing decisions on the future of dementia care. The growing numbers of dementia sufferers in low, middle and high income countries should be of great concern to policy makers and warrants a high political priority. The prevalence rates of dementia are unlikely to alter, but across all nations, life expectancy, and subsequently the total number of dementia sufferers are likely to continue to rise.

The WHO has an important lead role in encouraging nations to plan for the future care of their dementia sufferers and in improving awareness of this growing problem. There should be an inevitable shift of resource expenditure in the coming decades and nations cannot afford to underestimate the implications of the expanding dementia ‘epidemic.’

This report rightly suggests that raising awareness will be one of the first key measures in preparing for the future.

Investment in primary prevention is important, but equally, more needs to be done to address the deficit in research and treatments. The massive carer burden, both formal and informal also represents a huge global concern and the report highlights the urgent need for strong and decisive action to be taken by governments across the world to address this growing problem.

Richard McCollum
ST6 in old age psychiatry

References

Alzheimer’s Disease International: The International Federation of Alzheimer’s Disease and Related Disorders Societies, Inc (2009) World Alzheimer Report. http://www.alz.co.uk/research/worldreport/

Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry 2002 February;17(2):184-8.

Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005 December 17; 366(9503):2112-7.

Nitrini R, Caramelli P, Herrera E Jr, de C, I, Bahia VS, Anghinah R et al. Mortality from dementia in a community-dwelling Brazilian population. Int J Geriatr Psychiatry 2005 March; 20(3):247-53.

BGS Newsletter, November 2009
Issue 24 ISSN 1748-634000 24