Understanding dementia - Elderly Client Adviser

Feature

posted 1 Nov 1999 in Volume 5 Issue 1

Understanding dementia

In the UK dementia currently affects 5% of those aged 65 and over and this figure rises to 20% for the over 80s. The department of health has estimated that by 2040 there will be over 1.2 million people aged over 65 with dementia.

Dementia is the generic term for a number of diseases that affect the brain. Of these Alzheimer's disease is by far the most common form accounting for over fifty percent of the cases. Whilst symptoms vary from person to person and across the various forms of dementia those affected will commonly experience progressive loss of memory and their other mental faculties; in particular the ability to think clearly, speak, make decisions and often most disturbing to relatives, the ability to remember people and events.

The figures for the UK are striking but dementia is a global issue and medical and scientific advances will take place at an international level. It is undoubtedly one of the major health and social care challenge of the next century.

The Demographics

Dementia currently affects over 634,000 people in England and the total for the UK is over 700,000. As stated above the disease becomes increasingly prevalent with age and the table below demonstrates these stark variations:

Age Prevalence

40-65 1 in 1,000

65-70 1 in 50

70-80 1 in 20

80+ 1 in 5

With the age profile of the UK population increasing, there is predicted to be an associated and very considerable rise in the numbers of people with some form of dementia. Areas with high concentrations of older people, such as many coastal towns will need to take particular note of this in planning future service provisions.

As stated Alzheimer's disease is the most common form of dementia and the other most common variants are listed below:

Alzheimer's disease 55%

Vascular dementia 20%

Lewy body disease 15%

Pick's disease and frontal lobe dementia 5%

Other dementia's 5%

Whilst age is the most significant risk factor associated with dementia - most people are aged over 65; there are a number of sub-groups and the identification of their specific long term care needs is vital.

Younger people - there are estimated to be around 17,000 younger people with dementia in the UK. Although the symptoms of the disease may be similar across all age groups, the impact of dementia on younger people can be very different. Younger people, for example, are more likely to be in work, to have young families and require specialised genetic counselling and support. It is therefore vital that multidisciplinary services are well co-ordinated and inter-agency provision is essential. Fortunately, the needs of younger people with dementia are increasingly being recognised as an important medical and social problem.2

Down's syndrome - medical and social advances have increased the life expectancy of a person with Down's syndrome to the extent that nearly half of all people with Down's now live beyond 60 years of age. People with Down's syndrome, do however, experience premature ageing and a higher risk of developing dementia. An important genetic link with Alzheimer's disease has been identified - Down's syndrome is caused by having an extra copy of chromosome 21 and this is associated with the production of amyloid precursor protein (APP). Whilst there have been no population-based epidemiological studies, small scale studies indicate the following3:

Age range Prevalence

35-49 8%

60+ 50%

More generally, the life expectancy of people with learning disabilities is increasing and as a result, the number of older people with a learning disability who have dementia is also increasing. Again additional specialist support and services will be required to meet the needs of this group.

Ethnic minority community - proportionally the numbers of ethnic minority older people in the UK is relatively small butthe numbers are increasing steadily as this section of the population ages. There are many excellent examples of pioneering services which demonstrate an awareness of the particular experiences of people with dementia from ethnic minorities; for example the tendency for people to lose an acquired language with the onset of dementia. It has been demonstrated that where cultural needs are recognised and met through the provision of culturally appropriate services; people with dementia have begun to use the services in large numbers.4 It is clear therefore that all dementia services need to be culturally sensitive if the needs of all people with dementia are to be met in the most appropriate and effective way.

At any time over one third of all people with dementia will be in long term residential accommodation. Over the last 10 years there has been a considerable shift in the type of residential provision available to people with dementia.

The Alzheimer's Disease Society has documented that health authorities are providing fewer continuing care beds than in the past. The Society estimates, for example, that there was a 40% reduction in NHS continuing care beds over the five years from 1990 to 1995.5 Not only are there fewer NHS beds available, there are also few places offering specialist dementia care.

1997 department of health figures show that there are approximately 519,000 people of all ages living in long term care accommodation. The Alzheimer's Society estimates that this will increase proportionally as the very old make up an increasing percentage of residents. Currently, approxamitely three quarters of all residents of nursing and residetntial care have dementia.

It is a widespread assumption that people with dementia live in a residential establishment or with a carer. However, there are a large number of older people with dementia who live alone, many of whom will live very isolated lives. Such isolation is likely to contribute to further deterioration in their condition. Concerns about self-neglect, good nutrition and remembering to take medication remain particularly acute for people with dementia who live alone.10 The number of people who live alone has increased significantly, including the proportion of older people who live alone (62% of women and 49% of men aged 85 or over).9 In Home Alone the Alzheimer's Society estimated that in 1991 there were 154,000 people with dementia living alone.10 The results of a survey of 350 old age psychiatrists carried out by the Alzheimer's Society in conjunction with the old age section of the Royal College of Psychiatry indicated that 41% of the patients with whom they had contact, lived alone. This is a higher figure than had been previously estimated.

Dementia Care

Dementia is a debilitating and progressive disease and people with dementia experience a loss of both their physical and mental abilities. Ultimately, they will not be able to care for themselves without assistance. Although there is presently no cure, the type of treatment and care provided can have a very significant impact on the quality of life of people with dementia and their carers.

Dementia care services have advanced rapidly over the past decade and we expect improvements to continue and innovative models of care to be extended. We know that people with dementia and their carers want care services which recognise them as individuals, build on their own strengths and abilities and maintain their independence. Our knowledge of what works is constantly changing and developing. We need to continue to improve our understanding of which interventions work best with people with different types of dementia and which work best at which stage. It is a sad fact, however that in spite of this, many people with dementia continue to receive inadequate and inappropriate care.

Finding innovative ways to apply this knowledge and experience is key to improving the quality of life for people with dementia, all of whom will require long term care at some stage. We have identified three key factors which serve to undermine the delivery of good dementia care:

(a) the way in which dependency is encouraged

(b) the targeting of resources to those in greatest need and

(c) the way in which long term care costs are calculated.

Each of these factors contribute to a system which does not promote good long term dementia care. Six key values have been proposed which should underpin any system of long term care.11 These values have been endorsed by the Society's membership and they underpin the Alzheimer's Society's thinking on long term care.

I have detailed below these key values.

Ageless - service providers need to recognise that older people are not a single homogeneous group who exist in their own separate space, rather they are members of all of our communities. Older people have a wide diversity of experiences and opportunities. The long term care provided needs to be flexible enough to meet the needs of this diverse population. Changing assumptions and expectations surrounding age will also encourage long term care to be better integrated within the community. Few people under the age of 65 choose to live in a large group home with few personal possessions. Consequently, the design and planning of care services should take greater account of individual choice. Support systems should seek to underpin existing community structures rather than create new divisions by age and illness.

Although we recognise that most people with dementia are older people, there is a substantial minority of younger people who have dementia who require long term care. The needs of younger people with dementia and the needs of their carers are often unmet. Long term care should be ageless in the sense of being flexible enough to develop and adapt to the changing needs of the population with dementia, regardless of age.

Universal - we all know that the purchasing, planning and delivery of long term care in the UK is fundamentally flawed. Achieving high quality, reliable long term care requires an entirely new structure; one not founded on divisions nor caught between the boundaries of health and social services. Different systems of purchasing, different systems of delivery, different professional cultures and different forms of funding all compound the divisions between health and social services and those between private, voluntary and public provision. Good services depend on co-ordination and a shared framework.

The quality of long term care should be universal. People with dementia are among the most vulnerable members of our society and deserve the highest level of care and support. There are a number of initiatives which would increase universal access to care. These include the introduction of a single inspectorate responsible for improving the standards of care in all settings (day, residential, nursing, hospital and domciliary). National standards and guidelines for the administration of drug treatments would also ensure that eligibility is determined by need and not by geography.

We believe that there are a number of ways in which high quality care can be delivered. However, it is the approaches which advocate personal dignity and emphasise the individuality of the person with dementia as well as harnessing the expertise and experience of carers should underpin all models of long term care. The Society s Quality Care Initiative provides one model of care which focuses on the improvement in quality of life through the delivery of desirable outcomes. The emphasis is on personal relationships and reflects a quality policy for dementia care which can be applied to every setting and every stage of dementia. The Society is also working with the Royal College of Nursing on developing quality standards for dementia care in residential/nursing care homes.

The type of care received is often dictated by the place in which it is delivered and in spite of the trend towards care in the community, intensive support is most readily available to people in institutions. Flexible, intensive, person-centred support can and should be given in any setting (hospital ward, nursing/residential home, individual s own home or day centre) and yet, in many areas, community services are often restricted in both range and quantity.

Equitable - the current system is widely perceived to be inequitable, fragmented and highly variable in quality. Evidence from the Alzheimer s Society branches supports this and confirms the view that the system of rationing and allocating resources needs significant improvement. There is a strong desire for greater accountability and a more systematic way to evaluate real value for money .

One way of ensuring greater equity is to introduce national eligibility criteria which apply across all sectors (health, social and residential). This would ensure that access to dementia care is determined by need not postcode.

Any model of long term care must enable people to access adequate support irrespective of the setting in which they live. This is the only way in which equity can be promoted.

Independence long term care should promote independence. Recent research has demonstrated the success of new person-centred approaches which preserve dignity, treat people with respect, offer choice and safeguard privacy. It is vital that strong support for the carer should be integral to any dementia care service. Significantly, it is the promotion of independence which underpins all of the new approaches in dementia care. This promotion of independence can help to reinforce the values of self reliance and the feeling of being part of the community. However, one of the central mechanisms for obtaining support from both the public sector (social services and NHS continuing care) and the private sector (eg insurance companies) encourages dependency.

We should seek to maintain independence and promote interventions which enable people to exert maximum control over their own lives.

Transparent - it is critical that the system of long term care is made more transparent in two ways:

(i) People need to have confidence in the system of long term care. This will require an explicit understanding of what a person can expect in terms of what is paid in, how the system works, what it is for and what it does not cover. This transparency will allow people to plan for their future.

(ii) People with dementia and their carers need a more transparent gateway to access services. They should not be expected to navigate a bureaucratic system. Rather, the mechanisms should be clarified and both carer and user focused.

Affordable - long term care can only work if people contribute towards it. It must be affordable not only for those who benefit from it in the long term but also for those who have to see it through its transitional phase.

Although current estimates of the cost of long term care may appear be very high, it is likely that they are actually under-estimating the true cost. What is often forgotten is the cost of doing nothing, of not intervening early and of failing to meet the need. The greatest proportion of direct costs of dementia care are associated with institutional support, often provided at a crisis point. Acute care is always costly and is often precipitated by a lack of effective support. Moreover, whilst understandable as a response to increased pressure on resources and higher demands and expectations, the current practice of targeting resources solely at those in greatest need is perhaps short-sighted and counterproductive. By neglecting those in less need it hastens their descent into increased dependency and brings about the crisis which at last will trigger intervention; more often than not resulting in high cost, institutional care.

Julia Cream, Research and Policy Officer, Alzheimer s Society, Gordon House, 10 Greencoat Place, London, SW1P 1PH, Tel: 0171 306 0836, Fax: 0171 306 0808, jcream@alzheimers.org.uk