House of Lords - Science and Technology

Select Committee on Science and Technology Minutes of Evidence

Memoranda by Help the Aged

Help the Aged warmly welcomes the opportunity to provide evidence to the House of Lords Select Committee inquiry on research on ageing. With the present global demographic trends, unprecedented numbers of older people are set to face the risks of disease, dependence and frailty. The issue of research on ageing is therefore of fundamental importance. We hope that the Committee's inquiry will serve to raise the national profile of research on ageing and will promote actions which will lead to practical benefits in the lives of older people.

Help the Aged is the only charity in the United Kingdom which dedicates its research portfolio exclusively to ageing. The charity invests some £2 to £3 million pounds per year in funding and supporting research. Through its special trust, Research into Ageing, we provide a range of studentships, fellowships and programme grants. Our biomedical research is of the highest quality, being published in leading academic journals and leading to practical outcomes which directly benefit the lives of older people. We commission high impact social research to support our policy base.

In addition to funding, Help the Aged forms strategic relationships with leading research organisations, such as the National Collaboration on Ageing Research, the Research Councils and government departments in order to influence both the magnitude and direction of research on ageing. Internationally, we have strong links with the UN, WHO, the International Association of Gerontology and the International Federation on Ageing, all of which have strong research interests.

Help the Aged (and Research into Ageing) publish a wide range of research reports and publications to disseminate important new findings to the practical benefit of older people.

SUMMARY OF RECOMMENDATIONS

Help the Aged calls on the government for:

— a "step-change" in funding levels for ageing research in the UK on a per capita scale of that of the USA. The current low order, inconsistent budget for research on ageing poses a real threat to the well being of older people. A stable, long-term regime of generous government funding must provide the basic research infrastructure to which charitable funding can contribute.

— the appointment of a "champion for ageing research" in a central government department, such as the Office of Science and Technology, to lead and direct a national research agenda on ageing.

— the development of mechanisms for building research capacity to invest in the career paths of researchers, including gerontology and geriatrics.

— emphasis to be given to the critical areas of cellular ageing biology (such as immunosenescence, molecular genetics, and replicative senescence) which not only provide vital new knowledge but which present the potential for the improvement of human health and well-being.

— funding of long term research to determine whether there is a compression or expansion of morbidity and the biological, and socio-economic impact of these changes.

— more research to identify the modifiable risk factors that contribute to healthy ageing and the effectiveness of early intervention programmes on healthy ageing. The interplay of environment with the organism (particularly genetics) must be the subject of further research.

— research to underpin preventative and treatment strategies of conditions that cause poor quality of life and dependence.

— tackling ageism to improve the public perception of the benefits of ageing research, to change attitudes to funding and to improve the involvement of older people in the research process.

— research to identify ageing differentials due to gender and ethnicity.

— greater involvement of older people and service providers in research agenda-setting to improve the delivery of tangible benefits to the older population from developments in science and technology.

— more research to provide a cost analysis of the preventative value of assistive technology to enable people to continue to live in their own homes.

— more translational research to ensure that research results enter into practice.

THE BIOLOGICAL PROCESSES OF AGEING

What are promising avenues for research? How will such research benefit older people and delay the onset of long-term illnesses and disabilities? What are the differences between the sexes, and between different social and ethnic groups in the UK?

The Challenge of an Ageing Population

Britain is an ageing society. The demographic trends that are taking place in the UK are widely recognised. For the first time, the number of people in the population aged over 65 exceeds those under the age of 16, as shown by the results of the 2002 census. The fastest growing sector of the population is the over-80s. In the next five years there will be a 10 per cent increase in this age group.[11] Globally there are similar trends. The proportion of the global population aged 65 and over in 1900 was 1 per cent (UK 5 per cent); in 2000 it was 7 per cent (UK 16 per cent); and by 2050 it is estimated to be 20 per cent, a figure the UK would reach in 2020. In Europe, 50 per cent of the population will be over 50 by 2030.[12] With these demographic trends, unprecedented numbers of older people are set to face the risks of disease, dependence and frailty. There are huge implications for the economy, for pension provision and for the costs of health and social care. The tremendous advances in biomedical, scientific and social research have improved our understanding of the ageing process, of age-related disease and of older people's experience of growing old. However, much remains to be done.

What are promising areas for research? How will such research benefit older people and delay the onset of long-term illnesses and disabilities?

There are four areas, in our estimation, which are of particular concern. They are: the biology of ageing, the determinants and status of healthy ageing; age-related disease and its prevention; and the effectiveness of treatments for older people.

Biology of Ageing

Ageing is a summary term for a set of processes that predisposes us to deterioration of health and ultimately death with the passage of time. It can be thought of as a group of processes (including physiological, genetic and environmental) that contribute to increasing risk of frailty, disability, morbidity and mortality. The challenge for the science of ageing is to identify such processes and develop preventative and treatment strategies to delay the morbidity and ultimately mortality that occurs with the passage of time.

As good health is vital for older people to live full and active lives, it is essential to know more about the general biological principles underlying the ageing of cells, organs and organisms. There are many promising areas of research within this area: teasing out the mechanisms of the increase in longevity and health expectancy and translating such mechanisms into interventions; understanding the gender differences that exist in response to caloric restriction, and the role of the insulin-IGF1 axis. The genetics of long-lived and short-lived species is also important to determine the contribution of "longevity" genes. Promising avenues of cellular and organ ageing research include immunosenescence (the failure of the immune system to respond effectively to infection with age) causing the death of around 4-5,000 older deaths each year from influenza (up to 20,000 in a `flu epidemic) and many more deaths from subsequent conditions such as pneumonia. Studies on replicative senescence have the potential to bring clinical benefits in the future with strategies to block senescence and prevent oxidative damage. It is recommended that emphasis is given to the critical areas of cellular biology (such as immunosenescence, molecular genetics, and replicative senescence) which not only provide vital new knowledge but which present the potential for the improvement of human health and well-being.

Healthy Ageing

Life expectancy for UK citizens has been steadily increasing (approximately three months was added to life expectancy for each year of the last century) and while health expectancy (the number of years living in good health) has also been increasing, it is not clear to what extent the added years are experienced in good health.[13][14][15] There is a clear need for good reliable data to determine whether there is a compression or expansion of morbidity with the changing demographics and the biological, economic and social impact of these changes.

The science of ageing should be viewed as being wider than purely cellular changes, but viewed holistically as the wider factors contribute to morbidity and mortality. Lifestyle and environment contributes around 75 per cent of a person's chance of healthy ageing and longevity. The major indicator for health expectancies and life expectancy is socio-economic class with the greatest impact seen on health expectancies.[16] These inequalities in quality of life have been know for some time and should be urgently tackled at a political level. It is vital that these differences are explored further with longitudinal population studies and the environmental factors contributing healthy ageing identified and put into practice. Some of the modifiable risk factors are known: diet, exercise, smoking and can be the target of further governmental health promotion initiatives. These initiatives should take account of the data on health promotion in pregnancy, adolescence and throughout adulthood—ageing is not just about changes in middle age and beyond, many ageing processes start much early in life (bone loss starts in the third decade) and foetal health can contribute to these processes. More research is required to identify the modifiable risk factors that contribute to healthy ageing and the effectiveness of early intervention programmes on healthy ageing. The interplay of environment with the organism (particularly genetics) must be the subject of further research.

Age-related conditions

Preventing dependency, a key government issue,[17][18] not only depends upon minimising the risk factors and understanding of the basic biological processes, but also on research delivering on the understanding of age-related conditions, the development of effective treatment strategies and specific preventative measures. Some of the major causes of death (heart disease, cancer, and lung disease) are relatively well funded; others are not, notably stroke. The day to day health concerns of many older people are often focused on the non-disease issues—their feet, eyes, ears and teeth—as well as the more general frailty associated with ageing such as muscle wasting and poor balance causing poor mobility, loss of independence and an increased susceptibility to falls. Major causes of dependency and poor quality of life eg sensory loss, bone and joint degeneration, cognitive decline, muscle wasting, falls, and incontinence are relatively poorly funded and require substantial investment.

Incontinence is a case in point where there is a small research base within the UK, poor understanding of the biological process, little in the way of effective treatment and research funding in response mode competitive manner is rarely available. Without special initiatives of ring-fenced funds (such as that initiated by Research into Ageing in 2000) little change can be expected to help the six million people in the UK with this disabling and distressing condition.

Research is desperately needed to underpin preventative and treatment strategies of conditions that cause poor quality of life and dependence.

Treatments for older people

Research opportunities do exist and are emerging to treat degenerative and debilitating conditions eg tissue engineering using stem cells and genetic engineering for the treatment of degenerative conditions, hormones in osteoporosis and cognitive decline. Major advances in biomedical, social, physical and behavioural research have improved health and functioning, and continue to reduce rates of disease for older people, although this impact has been uneven across the older population.10 The representation of older people in pharmaceutical trials has improved with the new European Directive.[19] but there is still little funding available for the evaluation of clinical outcomes in trials involving interventions and treatment of older people.

Ageism affects attitudes to research on ageing at all levels. It influences both priorities and decision making in terms of funding and investment. Attitudes such as "incontinence and hearing loss are a normal part of ageing" are commonly experienced. Research activity is therefore low, the body of knowledge relatively poor, and hard fought for research funds hard to find. This vicious cycle needs to be broken. Similarly, the level of public awareness of the benefits of research on ageing, other than that in relation to specific diseases, appears to be poor. This particularly applies to research on healthy ageing which may not only prolong life but will improve its quality in the later years and have impact on public expenditure. Finally, there is a notable absence of the meaningful involvement of older people themselves in research, particularly in technology.[20] Ageism must be tackled to improve the public perception of the benefits of ageing research, to change attitudes to funding and to improve the involvement of older people in the research process.

What are the differences between the sexes, and between social and ethnic groups in the UK?

Gender differences have been identified in relation to response to caloric restriction[21] and in immunescenesence.[22] Ethnic differences clearly exist with demonstrable differences in longevity between countries.[23] The degree to which such ethnic differences can be attributable to genetic, socio-economic, nutritional, cultural or environmental factors is difficult to tease out,[24] but clearly all have a role to play. Help the Aged has well developed programmes working with the different ethnic communities and recognises the importance of inclusivity in this area. The scope for progress in identifying ageing differentials due to gender and ethnicity is large and warrants further investigation within identified priority areas of biological ageing.

RESEARCH IN TECHNOLOGY

The application of research in technology and design to improve the quality of life of older people, including: existing technologies which could be used to a greater extent to benefit older people; the development of new technologies

Introduction

Assistive technology (AT) has been defined very broadly as "any product or service designed to enable independence for disabled and older people".[25] With this in mind, it covers an extensive variety of aids, adaptations and supportive technologies including the following:

— Mobility aids, eg powered wheelchairs, stair lifts.

— Aids to daily living, eg accessible baths, showers or toilets.

— Environmental control systems, eg infra-red controls to allow the user to operate household equipment such as radios, TVs, light switches.

— Communication equipment, including accessible telephone equipment or videophones used for telemedicine.

— Security devices, eg community alarms to warn carers or other care services if anything is untoward.

— Smart Homes providing electronic or computer-controlled integration of assistive devices within the home.

— Beyond this, a range of more basic yet vital technologies aimed at assisting people to undertake activities of daily living. These include such aids as "jam-jar openers" and "stocking aids".

Priorities and gaps in research

Through the EQUAL programme the EPSRC has been the key government funder of research relating to design and AT over the past few years.[26] Within this successful programme there has been a real commitment to engage with users in delivering research which meets their needs—a progressive policy which should be developed upon.

Undertaking an assessment of research gaps and priorities would seem of little value unless there is greater and more transparent engagement with both older people in determining their priorites for technologies to support independence and those agencies responsible for providing and commissioning such technology. It remains the case that older people may not know what is available and those seeking to meet their needs don't always know what is wanted.[27] This is a real issue in that consumer demand must be one of the necessary elements of a successful introduction of services which should in turn inform the research agenda. Two key organisations, emPOWER and FAST (Foundation for Assistive Technology), are working to achieve a proactive approach to user involvement in this are. Help the Aged would greatly urge a more transparent process for agenda setting which begins from the perspective of older people.

Greater involvement of older people and service providers in research agenda-setting is recommended to improve the delivery of tangible benefits to the older population from developments in technology.

Barriers to transferring research into policy and practice

The translation of research into practice and policy remains a pressing concern. In their recent report,[28] the Audit Commission conclude that, in general, AT services in the UK are underdeveloped. As a result, new designs and technologies are not being transferred into practice. There may be a number of reasons for this.

The lack of integration and collaboration between agencies to deliver AT and the lack of professional training on and awareness of new technologies among service providers, including GPs, are certainly major obstacles.[29] Further, the question of budgets also complicates the picture—those agencies in the position to provide AT are not necessarily those that will benefit from them. For instance, Housing departments can use "housing supporting community alarms" but social services or health will reap the benefit. In addition, the capital costs relating to AT are not as much an issue as the revenue costs associated with providing staff who can deliver and train users to make use of AT.

Installation and user training of AT can be labour intensive and maybe off-putting for service providers with limited budgets. However, it is arguable that the longer term benefits of reduced interaction with the clients themselves should outweigh these costs. The Assistive Technology Forum argue that "a vicious circle exists where arguments for investment are undermined by a lack of evidence and effective evidence cannot be produced due to a lack of robust infrastructure".[30] One of the problems is that devices are seldom offered as part of a support package with staff included. Successfully demonstrating the benefits of such technology is therefore problematic.

Whilst cost benefit analysis has taken place with some forms of assistive technology,28 more research is needed to provide a cost analysis of its preventative value, in enabling older people to continue to live in their own homes. Generally, more translational research is required to ensure that research filters into practice.

Beyond this, there is a real need to ensure that older people are offered proper training and choice when accessing AT without which older people may be reluctant to make use of such technology. The shortage of Occupational Therapists and other health professionals with knowledge of AT creates delays in providing support to older people and is likely to reduce the time available to therapists to work with clients in providing appropriate AT.29, [31][32] A Joseph Rowntree Foundation study[33] found that "Age . . . [is] one of the strongest predictors of someone's interest in living in a smart home". The most interested were aged 15-34—the "ambivalent" were more likely to include older people and the "uninterested" were most likely to be aged 55 and over. Older people were the group most concerned about potential technical problems with the systems. Certainly the stigma of "disability" associated with the need to use special equipment[34] affects uptake of AT. Mainstreaming its benefits would seem to be vital in attempting to remove this stigma.

STRATEGIC ISSUES

How effectively is research co-ordinated in the public, private and charitable sectors (including internationally)? Have the correct priorities been identified? Are there any gaps in research? Is there sufficient research capability in the UK? Is the research being used to inform policy?

Introduction

Between 2002 and 2004, Help the Aged played a leading role in the joint IAG/UN initiative "Research Agenda for the 21st Century". This initiative started with the Valencia Forum in 2002 and was followed by expert workshops in each of the four UN Regions (Cape Town, Barcelona, Santiago and Tokyo). An international comparison across the four UN Regions reveals three common strategic problems with ageing research which are applicable to the UK. They are: low relative investment; fragmentation and lack of capacity; and absence of strategic direction.

Investment

In terms of investment, the total Research and Development budget (all sectors) for the UK (2002-03) amounted to £18,817 million; government expenditure £2,841 million and accumulated research on ageing to less than £200 million, about 1 per cent of the total. Government funding for ageing research is principally in vested via four of the Research Councils. None of the Councils spends more than 5 per cent of their budget on ageing research. For example, in 2002-03, the EPSRC's total budget was £436.2 million with the "EQUAL" Programme worth £9 million, 0.7 per cent of the total. Not only so but the dedicated spend on ageing by the Research Councils appears to be decreasing.

In the 2002 Spending Review,[35] Government priorities were Genomics (£110 million); eScience (£98 million); and Basic Technology (£44 million). Ageing research was not identified as a priority and this holds true for the Spending Review 2004.[36] Ageing research was not mentioned in the Vision for UK Science, no research achievements in ageing science were mentioned and ageing research was not one of the six priority areas for Multidisciplinary Research.

The principal government departments with research budgets for ageing are the Department of Health (DH) and the Department of Work and Pensions (DWP). Help the Aged estimates that in 2002-03 on-going projects were worth £20.45 million (DH) and £3.57 million (DWP) with an annual expenditure of £4.80 million and £1.23 million respectively. These are relatively small amounts.

Charitable spending on ageing research for on-going projects in any one year resides at about £125 million (£124.26 in 2002-03). However, two important caveats must be made. It is very difficult to portion out the costs of research because much expenditure is age-related and is not necessarily categorised as "ageing research". For example, the AMRC does not categorise its research expenditure by "age" but many of its members, eg British Heart Foundation, Alzheimer's Society, etc fund research which is clearly age-related. Secondly, the high impact of charitable funding, which is often variable and insecure, depends on sustainable, high order, reliable central funding on which the UK research infrastructure is dependent.

In spite of the low order of spending, the UK compares well with Europe which under the 6th Framework Programme (FP6) does not currently identify ageing as a research theme, though

1,155 million are being spent on combating major diseases, some of which are age-related. Under FP5 only

190 million was spent directly on ageing research over four years (1998-2002) through Key Actions 1 and 6.[37]

However, the UK compares poorly with the USA which through the National Institute of Aging (NIA) combines high order strategic thinking with enviable levels of funding. NIA has a budget of $994 million in 2004-05, a rise of 44 per cent over the last five years ($688 million in 2000-01). Of this sum, at least $669 million are being spent on Research Project Grants and a further 9 per cent on Institutional support.[38] The result is substantial progress in reducing illness and disability among older people in the USA and large reductions in projected healthcare costs.37, [39][40]

A "step-change" in funding levels for ageing research in the UK is required on a per capita scale of that of the USA. Questions must be asked as to why the UK has persisted with a low order, inconsistent budget for research on ageing which poses a real threat to the well being of older people. Help the Aged, with others in the voluntary sector, will play its part in maintaining funding for research. However, it has to be recognised that a stable, long-term regime of generous government funding must provide the basic research infrastructure to which charitable funding can contribute.

Research Capacity

Research capacity building is an issue because of the generalised problem of the absence of a research career structure in the Universities and the way they are funded. Charitable expenditure on research in the universities went from £250 million in 1990-91 to £550 million in 2000-01 and much of this investment was targeted to support research capacity. At the present time, such capacity as exists is threatened by the absence of adequate funding and is tiny in relation to the scale of the UK problem. Between 2000 and 2004 the demand for funding at Research into Ageing rose from 100 to 250 applications per year and with funding levels constant, the rejection rate consequently rose to 1:31. High rejection rates threaten capacity and do not augur well for the maintenance and expansion of the research base. In our current Major Gifts Campaign, 32 proposals mostly of outstanding international merit, have been submitted. Each proposal required £10-15 million. Of the total fundable volume of £450 million, only one proposal will be funded. The remainder of the proposals are highly likely to be lost to UK science. Finally, charitable support for capacity building will not be helped by the government requirement for universities to move to a "full economic cost" model by 2005, though the government has provided some £90 million in 2007-08 in support of the voluntary sector (the Charity Research Support Scheme).39

The development of mechanisms for building research capacity is necessary to invest in the career paths of researchers, including providing opportunities for research training in gerontology and geriatrics.

Strategic Direction

There is no central organising body for ageing research in the UK. Ageing and age-related research is carried out independently in the universities with little strategic direction. The National Collaboration of Ageing Research (NCAR) was set up in 2001 and has been largely successful in promoting a cross-council model of research which has led to the inauguration of a new programme, the New Dynamics of Ageing. The Funders Forum on Ageing Research (FFOAR), a parallel development to NCAR, is a co-operative body made up of the Research Councils, six major charities and the Department of Health. It meets once per year to receive reports from its members and to make recommendations for research and development. It has advisory powers only and lacks the authority to direct a national agenda. There is no government department which takes the strategic lead on research into ageing.

In the USA, the NIA provides a high degree of strategic direction. It provides substantial funding for four major Extramural Programs (Biology of Aging; Behavioral and Social Research; Neuroscience and Neuropsychology of Aging; Geriatrics and Clinical Gerontology), Intramural Programs at a dedicated gerontology research centre, Conferences, Workshops & Meetings, Funding & Training and Scientific Resources.

In view of the profound demographic changes taking place in the UK, Help the Aged calls on the government for a clear statement making research on ageing a greater national priority.

There must be the appointment of a "champion for ageing research" in a central government department, such as the Office of Science and Technology to lead and direct a national research agenda on ageing. This appointment must combine strong leadership with budgetary control and must involve partnership working with existing bodies, such as NCAR and FFOAR to promote and co-ordinate research on ageing.

October 2004

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