Ageing and dementia

The link between ageing and various forms of dementia is well established. Most sources report prevalence above the age of 65 as at least 5%. Delayed or imperfect diagnosis, especially of milder cases, could even raise this general estimate towards 10%. Approximately two-thirds of all dementia cases are widely reported as being Alzheimer's Disease.

Although reports that the prevalence of Alzheimer's Disease doubles every five years after the age of 65 have been disputed as too simplistic a mode of 'ready reckoning', there is no doubt that prevalence advances dramatically between the 65s and the 'oldest old'. Various studies have reported levels of prevalence as high as 20-35% for the over-85s.

By the mid-1990s, 'established' risk factors for Alzheimer's Disease (as distinct from 'likely' or suspected factors) were reported by the Writing Committee, Lancet conference 1996, as:

• Old age
• Down's syndrome
• Family history of dementia
• APOE genotype
  ("The challenge of the dementias", Lancet, May 11,1996)

The fact that the 'oldest old' are now the most rapidly increasing age group in the population of industrialised countries underlines the problem that medicine and caregiving will have to face unless advances and a better understanding of both - and of their relationship to one another - can improve the effectiveness of living with dementias and treating them..

The degree of severity of symptoms and the speed of progression of the disease add to the problems which patients, caregivers and health care systems will have to face in the years ahead. The average degree of severity is reported as approximately 30% mild, 40% moderate, and 30% severe; and progression was illustrated by a study which showed increases from 19% severe cases at the start, to 48% after 3 years and 67% after 7 years (reported by Fratiglioni, "Epidemiology" in "Health Economics of Dementia", ed. Wimo, Jönssen et al, 1998).

At home or in institutions?

The 'natural history' of Alzheimer's Disease has been mapped, as follows:

CONDITION	YEARS from onset
Symptoms	0-3
Diagnosis	1-4
Loss of functional independence	1½-4½
Behavioural problems	2-6
Nursing home placement	2½-8½ ----- DEATH 3-9

(Feldman and Gracon, "Alzheimer's Disease: symptomatic drugs under development" in "Clinical Diagnosis and Management of Alzheimer's Disease", 1996)

The possible delay in actual diagnosis and the loss of independence which can occur shortly after a delayed diagnosis; the widening area of uncertainty over the advent of behavioural problems which can be a major cause of nursing home placement: these elements portray a sombre and complex background to the medical, social and economic problems of the disease.

Placement in institutions is widespread and costly. A study of Medicare beneficiaries (i.e. mainly the elderly) in the USA in 1995 showed that 64.6% of enrollees who had been diagnosed by a doctor as having Alzheimer's Disease, were in a long-term facility. The same study showed that 45% of Medicare enrollees who were in nursing homes had Alzheimer's Disease (Eppic and Poisal, "Mental Health of Medicare Beneficiaries: 1995", Health Care Financing Review, Spring 1997).

In the UK, the degree of institutionalisation has been reported as considerably lower but rising. Whereas, in 1986, 36% of persons with 'advanced cognitive impairment' were in residential homes, nursing homes and hospitals, this had risen to 40% by 1992 (Kavanagh, quoted by Bosanquet, May and Johnson in "Alzheimer's Disease in the United Kingdom", 1998). It may well be closer to 45% by now.

The main predictive factors for the institutionalisation of dementia patients are, firstly, social variables (marital status and availability of caregivers); secondly, the heaviness of the burden on caregivers; and thirdly, the degree of severity of the disease in terms of both functional and cognitive impairment (Fratiglioni, op.cit. 1998). The first two of these three factors point to the social dimension of Alzheimer's as being no less grave than its medical aspects:

"It challenges our deepest preconceptions about human nature, the basis of consciousness, the freedom of the will, and personhood." (Lancet Conference, op.cit. 1996) Caregivers, often family members who are as old or older than the patient, face pressures under which their own health is damaged unless there is adequate social and financial support, caregiver training, and opportunities for time off. "Le maintien à domicile est la solution idéale sur le plan humain pour les malades. Ce n'est pas simple à mettre en oeuvre.....Les structures d'aide manquent cruellement."

["Domestic care for patients is the ideal solution in human terms. That is not easy to bring about...There is a cruel lack of structural support"]. (Prof. Bruno Dubois, "La maladie d'Alzheimer n'est pas une fatalité héréditaire", Le Figaro, September 21, 1999).

The art of shifting burdens

If that is the situation in France, it is equally true elsewhere. Society is content to take advantage of the caregiver's sense of devotion to the patient (especially when looking after a parent, sibling or spouse), and is shamefully delighted to receive that service 'free', or else inadequately remunerated by the social services. Who wants to pay when something is on free offer? After all, budgets are budgets, especially in health care.

An analysis of average costs of treating 'advanced cognitive impairment' in 1993 in the UK in various residential settings, split by funder showed that, whereas the National Health Service was funding over 95% of the cost in hospitals and in its own nursing homes, this fell to around 10-15% when the patient was looked after at home, and to less than 5% for residents in private and voluntary institutions (Kavanagh et al, quoted by Bosanquet et al, op.cit. 1998). Outside the NHS, the financial burden fell on the social services and the family.

The case for integrated care

Evidently, when budgets are constrained and tightly controlled, there is little incentive to alter the perverse temptations of burden shifting in favour of moves towards integrated care management. Yet that is precisely what is needed: the integration of medical care (through better diagnosis, more effective patient management, and the use of innovative drugs), with the development of stronger support structures for caregivers, financially and by way of training, advice and practical help.

The social as well as medical pressures set up by Alzheimer's Disease in ageing populations are too serious to be ignored by budgetary 'silo' management. Such problems do not have single, magic solutions. Even spectacular advances in drug development and gene therapy will not 'cure'
Alzheimer's Disease overnight or in the near future: and even if they did, 'silo' management of The Drug Budget would regard the cost of such new treatments as excessive, because the financial benefits would not accrue to the budget holder who is bearing the cost of purchasing such treatments.

The creation of decision-making structures that can integrate medical and social care, drug innovation and caregiving, is urgently necessary. Only by offsetting costs and benefits irrespective of the source of funds, can problems of the medical and social complexity of Alzheimer's Disease move towards constructive solutions.