Proposal The Irish LongituDinal Study on Ageing

Proposal A proposal to Atlantic Philanthropies to become a co-sponsor of one of the most important research programmes in the history of the State: TILDA The Irish LongituDinal Study on Ageing Contents 1 2 3 4 5 6 Executive Summary Background and need for research Proposed longitudinal study Methodology, including pilot and developmental phase Costs Conclusion Appendices 1. Budget for the pilot phase 2. Indicative 10-year budget 3. Governance structure 30 January 2006 1 Executive Summary Atlantic Philanthropies are respectfully requested to consider supporting the first ever landmark Longitudinal Study of Ageing in Ireland. Ireland is unique among the developed countries in never having carried out such a study, and the data is sorely needed – for policy, research, cultural and commercial reasons. While Ireland is late in planning such a study, this delay in combination with the nature of our proposal carries two important advantages, namely: • • We have learned from the experiences of similar exercises in other countries We are approaching this from a truly multidisciplinary perspective, which promises to bring unique and exciting insights to the whole area of ageing research, both nationally and internationally This project will be guided by a cross-institutional consortium of partners with a prior track-record in age-related research. TILDA will be in the first instance a 10-year study of 7,000 to 10,000 participants which will take place in three waves; Year 1, Year 5 and Year 10 punctuated by annual telephone contact. There are a number of principal themes which include health, mental status, social factors, quality of life, genetics, nutrition, economics, experience of ageing, expectations of ageing, historical lived-life themes, technology and gender studies. There is a wide range of research groups from many disciplines involved in TILDA emphasizing the appetite from all quarters for strategic ageing research. In the spirit of cross-institutional collaboration, TILDA is a nationwide study with partners in UCC, UCG, Dundalk Institute of Technology, ESRI and the Royal College of Surgeons of Ireland representing a system-wide collaboration drawing on the collective strengths and talents throughout the campus and beyond. TILDA is the biggest intra-campus, inter-institutional adult research study to date in Ireland. Atlantic Philanthropies are requested to consider supporting this € 10 million project as follows: (a) Provide pilot funding to support the initial feasibility & developmental phase of the study. Trinity Foundation has already received a commitment from a corporate body to provide €100,000 towards this. Becoming co-sponsors of this ten-year project. (b) Please note that: Trinity Foundation has secured a verbal commitment of € 4 million towards TILDA from a major corporate sponsor and support towards the developmental/pilot stage. It is hoped that this will be finalised in mid-February 2006. This will be one of the largest corporate gifts ever made in Ireland. 2 Background and need for research One of the great success stories of modern times is the increasing number of people living into old age. However, this triumph of humanity is also one of our greatest challenges: • While the proportion of the population aged 65 and older in Ireland has remained steady at about 11% for the past 40 years, it is projected that this proportion will rise to 15% by 2011 and to 19% by 2031 (Irish Department of Health 1999). The greatest increase will be in the oldest old, the over 80’s, which is expected to rise by 66% by 2035 (Fahey 1995). Ageing on this scale is an unprecedented phenomenon in human history; ageing is pervasive and global as it affects everyone, both the young and the old; it has significant consequences for the economy, the society and politics; and it is an enduring phenomenon as the trend towards older populations is likely to continue. Indeed, many demographers are predicting that of the female children born today in the richest countries, over 50 % will survive to the age of 100 and beyond. This has great implications for us as citizens, for our policy makers and also for companies operating in the health, social care and life assurance businesses. In a stark contrast to the evident importance of ageing, there is a dearth of social, psychological and health information on older persons in Ireland needed to enable forward planning and to ensure a ‘healthy and happy’ life span in later life. For example, a recent conference on new forms of homecare support in Ireland (Farmleigh, 27 September 2005) highlighted the lack of data on the care needs of community-dwelling older persons: as a result, the estimates of the cost of covering these care needs vary widely. Furthermore disturbing mortality data underpin the urgent need for such information: o Ireland has the lowest life expectancy in Europe - in 1990, 1999 and 2002. The health, social, economic, environmental and genetic factors which contribute to such a strikingly higher mortality are unknown. o In a WHO healthy life expectancy survey (WHO 2001), Ireland was ranked 22nd for males and 23rd for females out of a total of 23 countries surveyed. o No less disturbing is the information we have on the economic circumstances of older people in Ireland: the proportion of older Irish people living in relative income poverty had increased to nearly 45 % by 2001. o The inadequacies in the health and social care of older people are also evident from recurring reports in the media. • • • • If ageing in Ireland is already such a negative experience for many people, what will the experience be like when significant population ageing has taken place in 20-30 years time? The World Health Organisation predicts that the growing numbers of older people in society will not lead to problems as long as ‘active ageing’ policies and programmes which enhance the health, independence and productivity of older citizens are enacted by governments, international organisations, private sector companies and voluntary sector bodies. Ireland is now in an ideal position to prepare for successful population ageing and to ensure that some of the lessons learned in societies that aged at an earlier stage are taken on board here – but to do this we urgently require accurate and representative health and socio-economic data. Atlantic Philanthropies have an opportunity to champion this major initiative to support successful ageing for the individual and society in a real, tangible way. 3 Proposed longitudinal study To develop an environment for ageing well we need to characterise the older Irish citizen and explore factors which determine successful aging. This can only be done with the help of a nationally representative survey of our older population that will act as the foundation on which we can plan appropriate health, medical, social and economic policies. The proposed study would provide a comprehensive and accurate picture of the characteristics, needs and contributions of older persons in Ireland that would be invaluable for: • • • policy-makers & public sector service planners, voluntary sector actors engaged in activities that seek to enhance the social integration of older citizens, and many private sector companies in the insurance and services industries. Furthermore the study will deliver quality cutting edge research consistent with the emerging national initiative towards a “knowledge society” built on innovations in science and technology. Virtually every other advanced industrialised country has carried out a national longitudinal ageing study to help model their health and social care policies suited to the individual countries’ needs. It is now imperative that a nationally representative study be carried out in Ireland. It is important that the survey provides an accurate picture of older people in Ireland as a whole. For this reason, the survey will be representative of both the rural and the urban population. The objective of this study is to provide up-to-date and on-going information which will drive reform of the health and social services and society to enable successful ageing, influence perceptions of ageing, commission and provide best models of care for older Irish citizens now and for future generations by determining 1. 2. 3. 4. 5. 6. the health needs of older people the social and economic needs of older people the health and social needs of families and carers of older people the biological and environmental components of ‘successful ageing’ the contributions that older people are making to society and economy how each of these key components (health, wealth, happiness) interact such that we can ensure that Ireland meets the needs and choices of its citizens in a personalized and positive environment and with due dignity and respect. This is an ambitious but crucial agenda. Factors Influencing the Experience of Ageing Happiness Health Wealth Initial Research Questions (to be finalized and fully expanded in the pilot & development phase): Q1. What are the key components and determinants of quality of life among older adults in Ireland (income, care, housing, families, morale, pensions, social networks, participation in paid and unpaid work)? What are the scale and scope of contributions made by older people to life in Ireland? What is the health status of older people, what factors impact on this? What is the mental status of older people in Ireland and what factors impact on this? What is the relationship between health and social, demographic and financial needs to determine successful ageing? Do environmental factors influence healthy life span? What are the expectations of older persons, what factors impact on this? How does this experience of ageing vary between men and women? What kind of social and historical information can we glean from narratives of older people and how do their life events shape the experience of ageing? How do genes influence disease processes or successful ageing and how do these interact with environmental and clinical factors? Q2. Q3. Q4. Q5. Q6. Q7. Q8. Q9. Q10. We hypothesize that by collating accurate socio-economic, health and personal data we will drive and shape strategic policies which will change and greatly enhance the ageing experience for Irish people today and in the future. We expect that the research themes will interact and overlap to paint a bigger picture: Factors affecting the experience of Ageing Genes Genes Health Health Nutrition Nutrition Mental Mental health health Experience Experience ofof Ageing Ageing Family Family Networks Networks Income Income and and assets assets Social Social Participation Participation Work and Work and Retirement Retirement Marital Marital Status Status Household Household Structure Structure Education Education 4 Methodology A large sample of individuals in the Republic of Ireland will be drawn with the view to gathering data representative of the 55+ population, urban and rural. Three waves of the survey will be conducted (estimated times are January 2008, January 2013 and January 2018), punctuated by annual telephone follow-ups and smaller-scale add-on studies for all consenting participants. Survey of Older People in Ireland – Time line and Sample Wave One 2008 Core Sample CAPI administered questionnaire N=7,000 Follow-Up • 2013 Soc-Economic Sub-sample Self-Administered Questionnaire Bio-Medical Sub-sample In-home assessments Hospital assessments Personal History Sub-sample Unstructured interviews Residential Care Sample Bio-psycho-social questionnaire and assessments Wave two conducted • 2018 Wave three conducted • Annual - telephone follow-up with all respondents Core questionnaire will examine: • socio-demographics: living arrangements, family data, • physical health (self-assessed), lifestyle, nutrition, • social support and participation, use & perceived need for health & social care, • attitudes to ageing. Socio-economic sub sample (self-completion questionnaire) will include questions on • inter-generational transfers (monetary and in-kind), • estimated value of assets and savings (including housing), • political preferences Medical measurements will track: • Cardio-vascular (blood pressure), • neuro-psychological (mood, sleep, cognition), • locomotor (gait, balance), • disability, • oral health, • blood samples for routine haematology and bio-chemistry, lipid profile, • • • nutritional markers, inflammatory markers (including cytokines), bio-markers of ageing (DNA repair and damage and telomere and DNA and serum for future genetic-proteone analyses. Note:Dissemination - public awareness and a high profile for TILDA is key to success Participation is key to this exercise – this means that TILDA will be a high-profile project that engages the enthusiasm of the whole population, especially the participants. A wellmanaged communication programme will be central to planning – already RTE and various newspapers have expressed interest in broadcasting/publishing findings & interesting stories arising from TILDA research and activity. The qualitative elements of TILDA Note: The Lived Life – A Qualitative perspective Mme Jeanne Louise Calment: February 21, 1875 - August 4, 1997 20 years 40-45 years 117 years 1 2 2 y e a rs One of the most interesting and unique aspects of this project is the Qualitative Interviews. Using a smaller sample , interviewers will probe deeper into the experience of getting older. The output of this will be fascinating in itself and may yield surprising and challenging insights, but it will also bring greater understanding and clarity to the “hard data” collected in the quantitative stage. While analysis of health and wealth is largely quantitative, analysis of happiness is largely qualitative. Where quantitative data could show that very few people planned their post retirement income, qualitative discussions might give some insights into why; perhaps most people don’t think they will live that long, or have little idea of how the processes of ageing will affect them, or have their concerns primarily focused on providing for those who will survive them. Taking a random sub-group from the larger study, the fourth element of TILDA, the Lived Life project, will use the skills of a multidisciplinary group to investigate the cohort’s view of itself, it expectations and its experiences. It will concentrate on individual stories, valuing each respondent as an individual and seeking to capture the diversity of experience and range of ways of being older among the group, to see whether the data gathered from the quantitative analysis is reflected in older people’s own view of themselves. In a series of individual interviews across the lifetime of the project it will ask the following questions: Q 1. How do you feel about being, and getting, older? Q 2. What most affects your quality of life? Q 3. What is the single most important thing in your life at the moment? Q 4. What did you think it would be like to be older when you were younger, and what plans did you make because of that? Q 5. How does your experience of being older now compare with what your expectations were of being older? Q 6. Is that changing the plans you’re making for being older again? Q 7. When you see images of older people in the media, in advertising, on television, in art, or when you read about them in the newspapers or in books or magazines, do you identify with those images? Q 8. How do the images of older people projected by society sit with your own view of yourself? Q 9 Do you think your expectations of yourself are the same as the expectations of older people you see reflected in society? The gathering of such data will give us a richer, more developed result from the statistical data, and identify better what motivates older people in their choosing of their lifestyles. The qualitative data will be used in comparison with the quantitative data, and will show whether there are important points not being picked up in the statistical analysis. In order to match the individual responses against the projected social images, we need to analyse those images. We have already commissioned a set of seven Masters’ studies in this area as listed below, with expert supervision in the areas of history, gender and women’s studies, art history, electrical and electronic engineering and English literature. The studies will be carried out JanuarySeptember 2006 with a symposium presenting the results in autumn 2006. Pilot and developmental phase 1. Scope and extent of the study Identifying key questions, assessment and survey protocols Prioritising the research themes and questions which will inform policy but also deliver high-quality research output is central to the success of this project. A key outcome of the developmental stage is identifying and prioritising key multidisciplinary questions. Following this, we will develop the assessment process based on the key questions i.e. the survey instrument, telephone questionnaires, home assessments and institutional care assessments. The assessment process will then be piloted to establish the duration of the assessments, acceptability of the assessments, travel requirements, and the number of survey staff required to apply assessments both in the community and residential care settings. Knowledge transfer from previous studies Because TILDA is taking place after many international longitudinal studies, we are in a unique position to capitalise on output and lessons from previous studies. In this context we plan to work closely with partners in the US National Institute on Ageing that has both co-ordinated the Health and Retirement Study and played a significant role in the current English Longitudinal Study on Ageing. Links will also be forged with other international partners in research institutes that have been closely involved with designing and implementing longitudinal studies. Feasibility of an all-Ireland study There may be advantages in conducting an all-Ireland study i.e. including Northern Ireland in the survey design. The key considerations to be evaluated are: - the added value to be derived from including and comparing NI with the Republic - the sample size required to make meaningful comparisons between the two samples - the possible sources of funding for the NI component Existing datasets will be explored to establish the quantity and quality of relevant data in Northern Ireland (sources include the recent HARP study and Northern Ireland Life and Times survey). This exploration will also include making links with agencies and institutions with extensive experience of cross-border research collaboration, such as the Institute of Public Health. 2. Partnerships and long-term sustainability Exploration of funding opportunities and buy-in from government agencies (such as Department of Health, Department of Finance, Department of Transport) is of key importance for ensuring that TILDA influences policy and becomes a long-term project with a lifespan well beyond the 10 initial years. The researchers behind this proposal intend to ensure that TILDA will become indefinitely embedded both in the policy making and research infrastructures of Ireland. The project team have identified strengths within Trinity; in areas where there were deficiencies in Trinity, collaborating partners in other institutions were established. For example, Professor Hannah McGee in the Royal College in Surgeons will lead on quality of life components, Professor Eamonn O’Shea NUI Galway will lead on rural gerontology and Ivan Perry from UC Cork will take the lead on epidemiology. Other close collaborators include the Economic and Social Research Institute and Dundalk Institute of Technology. Part of the feasibility stage will be to develop further links with experts in areas that can add value to the study identified through the pilot phase. 3. Governance It is important in the context of intra- and inter-institutional relationships and intellectual property (Academic Resource Allocation Model - ARAM1) that clear governance structures are put in place at the outset of a major research initiative such as TILDA. This is also important for ensuring accountability and continuity, and for 1 Universities in Ireland have recently implemented an academic assessment model whereby the research activity of an academic unit is an important determinant of the resources that are channelled for departmental use and development. maximising access to the resulting datasets for existing and new partners. The governance structure will be established in co-operation with key partners and will be modelled on best practice models from other longitudinal studies. Part of the governance structure will be a mechanism for dispute resolution. Clear and transparent rules and procedures will be established to cover issues such as authorship and intellectual property. 4. Communications and public relations We will explore and put in place means for maximising communication within the research community, between the research community and media, and also within the international academic community. Successful communications strategy will involve anticipating sensitive issues and minimising attrition rates. Media links will be developed and cultivated to raise awareness of TILDA and to assure maximum response rates: the aim here is to ensure that the people of Ireland are signed up to TILDA 5. Key roles and appointments The following roles are instrumental for the success of the pilot phase and TILDA in the long-term: Project manager PR consultant (1 day per week) Personal assistant to project manager We will also employ four Researchers, two with bio-medical (e.g. nursing) background who can deliver on the necessary bio-medical components and two with a social science background to deliver on the socio-economic components. 2 x researchers with social science/economics background 2 x researchers with bio-medical expertise In addition to the personnel costs, allowance has been made in the budget for travel and conferences for project staff, international advisers (travel, accommodation, honoraria) and overheads (including office accommodation). Milestones By 4 months the project team will have: recruited and trained key staff secured office space established the governance structure secured commitment to full funding of the first 10 years set up a website launched TILDA By 8 months we will have: - - completed the initial scoping regarding the survey design accessed the relevant databases and datasets written an exhaustive literature review on the methods and findings of previous longitudinal studies established pilot screening and assessment procedures for rural and urban respondents, and for both community-dwelling and residential care respondents developed a communications and public relations programme By 12 months we will have: decided upon inclusion or exclusion of the Northern Ireland component secured commitment to long-term collaboration from government agencies conducted the first meeting with external advisers By 18 months we will have piloted survey data secured office space and recruited staff for the first wave of TILDA By 24 months we will have analysed the pilot data refined survey design have commenced the first wave of TILDA TILDA Core Project Team To facilitate rapid progress at this early stage of TILDA, the core project team comprises a small number of key participants from across TCD: Prof RoseAnne Kenny, Medical Gerontology Prof. Paddy Prendergast, Bio-Engineering Dr Virpi Timonen, Social Policy Prof Charles Normand, Health Economics and Management Dr Amanda Piesse, English A key outcome of the developmental stage is ensuring that the Steering Committee of TILDA comprises a broad range of individuals representing different disciplines, institutions and governmental and voluntary sector organisations, including a consultative forum of older persons. 5 Costs Appendix 1 shows the costs of the 24-month pilot phase. Appendix 2 shows the costs of the survey for the initial 10-year period (to incorporate three data sweeps). Realistically, € 10 million will need to be secured before we can properly embark on this initiative. This need not be paid up front: scheduling of payments can be discussed. 6 Conclusion Now that Ireland is facing all the challenges and opportunities of an ageing population, this is an opportune time to undertake a nationally representative survey of the ageing population in Ireland. A survey that accurately depicts the characteristics and circumstances of older people is urgently needed in order to be able to design health, pensions and long-term care policies in a truly ‘evidence-based’ manner. This will ultimately translate into a better quality of life for older people in Ireland. Appendix Draft governance structure Proposed TILDA Team: 1. 2. Lead Institution: Collaborating Instituions: Trinity College Dublin UCD, UCG, RCSI, ESRI, Dundalk Institute of Technology To be decided Professor Rose Anne Kenny External advisors from funding bodies, HSE, CSO, National Council on Ageing and Older People Prof Paddy Prendergast, Prof Robert Gilligan, Prof Rose Anne Kenny, Prof Charles Normand, Amanda Piesse, Nick Sparrow, Dr. Virpi Timonen; members from collaborating institutions to be identified and appointed. To be decided To be decided 3. 3. 4. Trustees Principal Investigator: Board: 5. Management Group: 6. 7. Administrator: Consultants: