The Economic and Social Effects of Care Dependence in Later Life
Lead Research Organisation:
King's College London
Department Name: Inst of Psychiatry School Offices
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Publications
Guerchet MM
(2018)
A cohort study of the effects of older adult care dependence upon household economic functioning, in Peru, Mexico and China.
in PloS one
Mayston R
(2014)
Exploring the economic and social effects of care dependence in later life: protocol for the 10/66 research group INDEP study.
in SpringerPlus
Lloyd-Sherlock P
(2017)
Allocating Family Responsibilities for Dependent Older People in Mexico and Peru
in The Journal of Development Studies
| Title | Sobrellevando (coping) - caring for dependent older persons in Peru |
| Description | A 17 minute short film (in Spanish with English subtitles) in which family carers of three older persons in Lima and Canete Province movingly describe the impact of caring for an older relative on their lives, their motivations, and hopes for the future. This is the first of four project films that have been realised. Footage from all four countries will be edited into a single film to be used for educational, awareness raising and advocacy purposes. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2013 |
| Impact | This film was used in edited form by Department of Health UK to illustrate the global impact of dementia at the G7 Dementia Legacy event in London, June 2014. |
| URL | https://www.youtube.com/watch?v=qNr5Vta17PQ |
| Description | In this mixed methods study in China, Mexico, Peru and Nigeria, we sought to assess the impact of living with a care dependent older person on wider household economic and social function, and to explore underlying mechanisms, and decision-making processes around care arrangements, using detailed household case studies. All quantitative and qualitative interviews have been completed in China, Mexico and Peru, and the qualitative work has been completed in Nigeria. Data has been analysed and several publications are currently under preparation. Project symposia to disseminate findings have been held/ will be held at the Alzheimer's Disease International annual conference (Puerto Rico, May 2014), International Federation on Ageing (Hyderabad, June 2014), World Federation for Mental Health/ Mental Health for All (Lille, April 2015), International Association of Gerontology and Geriatrics (Dublin, April 2015). An edited version of the project film shot in Peru was used by the Department of Health at the UK G7 Dementia Legacy Event to raise awareness of the global impact of the condition. Methodology developed for the project The study protocol has been published in an open access online journal (Mayston et al 2014, Springer Online PMC 25105086) The project questionnaires developed to assess household economic functioning seemed to perform well. Equivalised household income and expenditure/ consumption indicators were highest in China sites, followed by Peru and Mexico. In Latin America, income and expenditure were higher in urban than rural sites, but the opposite was true in China. All distributions were positively skewed, most particularly in China, suggesting higher levels of income inequality. Patterns of correlation between income and expenditure/ consumption varied between sites consistent with expectations regarding rural and urban economies, and the high saving rates in China. The questionnaires will be used in adapted form in a European Union funded network consortium (EMERALD) to assess the impact of increasing coverage of community-based treatment of serious mental disorders in 5 low income countries. We shall also be incorporating these and other selected measures (older adult autonomy and met/ unmet needs) in the next wave of our 10/66 population-based surveys in Latin America and China (2015-19, funded by the European Research Council) to achieve a richer and more detailed assessment of economic status and social protection. Testing of hypotheses Controlling for household assets, occupational social class of the index older person and household composition at 10/66 baseline survey, we tested for the possible impact of care dependence among older residents on household impoverishment. 1. There was evidence for reduced household expenditure and food consumption linked to care needs of older adult residents, particularly when needs for care had been longstanding. There was also moderate evidence for increased economic strain regardless of the duration of care 2. While there was a trend towards lower equivalised household incomes, particularly in chronic care households, this effect was not statistically significant. The absence of an association did not seem to be explained by higher levels of compensatory income from external sources (gifts from family, and charity). 3. Household healthcare costs were significantly higher, and catastrophic healthcare spending more likely among care households in some sites (particularly Peru). This association was not apparent in all sites, likely explained by differences in social protection mediated through modes of healthcare financing. 4. There was a trend towards not working because of the demands of caring for an older household member being considerably more common in incident and chronic care than control households. 5. Care exit households were defined as those where all older adults needing care (in most cases, all of the older residents) had died. These households were characterised by much lower income from external sources than all other household types, and significantly lower household healthcare costs. This suggested an important impact of the presence of older household members on healthcare costs, and that households with older residents tended to benefit from income from external sources, regardless of needs for care. Our qualitative research, comprising 25 detailed household case studies (61 open-ended interviews with multiple family members) in Peru, Mexico, China and Nigeria, identified that the state and local government and health services were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a 'journey without maps'. Women were de facto caregivers, but often not decision-makers. In some settings the traditional role of a female relative as caregiver was begining to be contested. Household composition was flexible and responsive to the changing needs of multiple generations. Stretched finances were a frequent cause of family dissent. In summary, we have identified a clear link between the development of needs for care in an older household member, and economic strain and relative impoverishment impacting adversely upon all household members. In most low and middle income countries, long-term care arrangements remain the sole responsibility of family members, with the requirement to provide for basic needs and financial support often enshrined in law. The implications of our findings are 1. Population ageing, with the attendant rapid increases in dependent older people, is a development issue 2. Social pensions, and targeted benefits (disability benefits, and compensatory caregiver allowances) would help to bolster and incentivise informal family care systems. The introduction of such policies would be pro-poor, and would promote equity by pooling risk across society 3. There is a need to develop and evaluate community-based health and social care interventions for older people that might reduce the incidence of disability and dependence, and mitigate their impacts on the quality of life of the older person and wider household functioning. Such interventions are not routinely available in any of the countries studied. |
| Exploitation Route | All of our data, qualitative and quantitative, will be made available in anonymised form to the wider scientific community, for secondary data analysis. As far as our findings relate to the specific issues around dementia care, we are working with several stakeholders linked to the G7 Dementia Legacy process. Specifically we are seeking to ensure that project findings are included in an OECD/ WHO report on long term care systems currently being prepared for the World Dementia Council. Alzheimer's Disease International is considering making 'Women and Dementia' the focus for its 2016 World Alzheimer Report, by which time we will be able to contribute rich and fully analysed data from the INDEP study relating to gendered aspects of care (both informal and paid) across three continents. We are currently working with the WHO Ageing and Lifecourse Department to develop a new evidence-based health and social care intervention for frail and dependent older people (WHO-COPE). The cross-cutting theme of caregiver support will be strongly informed by emerging INDEP evidence. We also anticipate that INDEP evidence will be constitute an important basis for WHO-led advocacy for governments to invest in scaling up of the package of care and its training procedures within their community health systems. We currently have a grant under review with the EU Horizon 2020 program for the phase 2 and phase 3 evaluation of the WHO-COPE intervention in sites in Latin America, Romania and Ethiopia |
| Sectors | Communities and Social Services/Policy,Education,Healthcare,Government, Democracy and Justice |
| URL | http://www.alz.co.uk/1066/indep.php |
| Description | The greatest interest in our research to date has been in the policy communities in Latin America. Hence our investigators have made invited presentations to CEPAL (Comision Economica para America Latin y el Caribe - https://twitter.com/geriatriamexico/status/652546053799964672) and for the Conference Series on Aging in the Americas supported by the Mexican Government (Secretaria de Salud) and the Instituto Nacional de Geriatria http://www.geriatria.salud.gob.mx/descargas/investigacion/Ponencias_USC_2015/11_SOSA_INDEP_STUDY.pdf Among other regional dissemination activities, these presentations have been influential in the development of the Mexican National Dementia Plan and the PAHO regional Dementia Plan http://www.paho.org/hq/index.php?option=com_content&view=article&id=11322&Itemid=41586?=en |
| First Year Of Impact | 2015 |
| Sector | Communities and Social Services/Policy,Healthcare |
| Impact Types | Economic,Policy & public services |
| Description | Ghana Education Trust PhD studentship for Nana Ageyman |
| Amount | £30,000 (GBP) |
| Organisation | Ghana Education Trust |
| Sector | Public |
| Country | Ghana |
| Start | 10/2013 |
| End | 10/2016 |
| Title | 10/66 INDEP household interview |
| Description | A structured approach to assessing and attributing household income, household consumption, and indicators of economic strain |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2013 |
| Provided To Others? | Yes |
| Impact | The questionnaires will be used in adapted form in a European Union funded network consortium (EMERALD) to assess the impact of increasing coverage of community-based treatment of serious mental disorders in 5 low income countries. We shall also be incorporating these measures in the next wave of our 10/66 population-based surveys in Latin America and China (2015-19, funded by the European Research Council) to achieve a richer and more detailed assessment of economic status and social protection. |
| URL | http://www.alz.co.uk/1066/indep.php |
| Title | INDEP 10/66 older person autonomy and met/ unmet needs scales |
| Description | Self-report ordinal scales to assess decision-making autonomy, and the extent to which basic needs for food, shelter, and medical care are met, partly met, or unmet |
| Type Of Material | Physiological assessment or outcome measure |
| Provided To Others? | No |
| Impact | We shall be incorporating these measures in the next wave of our 10/66 population-based surveys in Latin America and China (2015-19, funded by the European Research Council) to achieve a richer and more detailed assessment of economic status and social protection. |
| URL | http://www.alz.co.uk/1066/indep.php |
| Title | 10/66 INDEP houshold and individual interviews |
| Description | This data base comprises a) household interviews with data on household composition, assets, income (and sources), and consumption, health status, needs for care, and healthcare expenditure for all household members b) individual interviews with all older residents (aged 65 years and over) with information on health, disability, care given and received, personal income and sources, decision-making autonomy, and basic needs met and unmet. The data base currently includes data from urban and rural sites in Mexico, Peru and China. Data from Nigeria will be added shortly. We have completed 874 household interviews across the six sites in Mexico, Peru and China, from the 1283 households originally selected (an overall household response rate of 68%). At household level, response rates were lower in urban China (52% -mainly due to tracing difficulties following urban redevelopment) and Peru (55% and 59% - with a higher rate of refusal than other sites) but ranged from 78% to 91% in other settings. Household response rates were understandably much lower for care exit households (55%) where all index older persons had died, but similar for incident care (77%), chronic care (67%) and control (70%) households. Once access to the household had been secured, participation rates for index older people were high. Overall, in 672/ 715 households (94%) where interviews of index older people were required, all eligible older people completed an individual interview. In only two of the 715 households were none of the index older people willing or available to be interviewed. |
| Type Of Material | Database/Collection of data |
| Provided To Others? | No |
| Impact | Anonymised data will be made freely available to the wider scientific community, according to 10/66 Dementia Research Group policies |
| URL | http://www.alz.co.uk/1066/indep.php |
| Title | The 10/66 INDEP mixed methods study of the economic and social impact (at household level) of residing with a care dependent older person in China, Mexico, Peru and Nigeria |
| Description | This is a fully documented anonymised data archive for all qualitative and quantitative data generated by the INDEP project, filed with the UK Data Service (SN 852071) |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | No registered users to date |
| URL | https://discover.ukdataservice.ac.uk/catalogue/?sn=852071&type=Data%20catalogue |
| Description | The epidemiology of dementia, and care arrangements of older adults in Ghana - collaboration with Legon University Accra, and Kintampo Demographic Surveillance Site |
| Organisation | Kintampo Health Research Centre |
| Country | Ghana |
| Sector | Hospitals |
| PI Contribution | As a direct result of the INDEP study information available on our website, we were contacted by a prospective PhD student Naana Ageyman, a demographer and social scientist from Accra, with an interest in conducting a similar study in Ghana. We were able to introduce Naana to the Kintampo Demographic Surveillance Site in rural mid-Ghana where we had previously conducted collaborative research on adult mental health, with an interest among our partners there in developing further work on ageing and dementia. As a result of this Naana registered with King's College London for her PhD, with two INDEP post-docs, Maelenn Guerchet and Rosie Mayston as her supervisors. Naana has successfuly completed a pilot population-based survey of over 800 older adults aged 70 and over, and then completed detailed household case studies using the INDEP qualitative study methodology and topic guide in order to explore care arrangements for frail and dependent older people in a second sub-Saharan African setting. A paper on the qualitative component of this work is shortly to be submitted. Subsequently, Maelenn Guerchet has built on the collaboration with the Kintampo DSS team, and is now working with the on plans for a larger epidemiological study, hopefully to be conducted in a network of SSA DSS. |
| Collaborator Contribution | Provision of research infrastructure in Kintampo DSS, and academic input and support into the research protocol and its realisation |
| Impact | The outputs from this collaboration are largely still to be realised. A paper on the qualitative component of the mixed methods study is shortly to be submitted. Nana's PhD thesis is due for submission in October 2016. A futher paper on the quantitative survey will be drafted after that date. Alzheimer's Disease International will issue an Africa Regional Report later this year, and we anticipate that Nana's research, among the first of its kind from Ghana, will feature. |
| Start Year | 2014 |
| Description | The epidemiology of dementia, and care arrangements of older adults in Ghana - collaboration with Legon University Accra, and Kintampo Demographic Surveillance Site |
| Organisation | University of Michigan |
| Department | School of Public Health |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | As a direct result of the INDEP study information available on our website, we were contacted by a prospective PhD student Naana Ageyman, a demographer and social scientist from Accra, with an interest in conducting a similar study in Ghana. We were able to introduce Naana to the Kintampo Demographic Surveillance Site in rural mid-Ghana where we had previously conducted collaborative research on adult mental health, with an interest among our partners there in developing further work on ageing and dementia. As a result of this Naana registered with King's College London for her PhD, with two INDEP post-docs, Maelenn Guerchet and Rosie Mayston as her supervisors. Naana has successfuly completed a pilot population-based survey of over 800 older adults aged 70 and over, and then completed detailed household case studies using the INDEP qualitative study methodology and topic guide in order to explore care arrangements for frail and dependent older people in a second sub-Saharan African setting. A paper on the qualitative component of this work is shortly to be submitted. Subsequently, Maelenn Guerchet has built on the collaboration with the Kintampo DSS team, and is now working with the on plans for a larger epidemiological study, hopefully to be conducted in a network of SSA DSS. |
| Collaborator Contribution | Provision of research infrastructure in Kintampo DSS, and academic input and support into the research protocol and its realisation |
| Impact | The outputs from this collaboration are largely still to be realised. A paper on the qualitative component of the mixed methods study is shortly to be submitted. Nana's PhD thesis is due for submission in October 2016. A futher paper on the quantitative survey will be drafted after that date. Alzheimer's Disease International will issue an Africa Regional Report later this year, and we anticipate that Nana's research, among the first of its kind from Ghana, will feature. |
| Start Year | 2014 |
| Description | Engagement with third sector advocacy groups |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This exposure helped raise awareness among HelpAge International and Age International staff about the INDEP project and the importance of dependence as an emerging issue on the international development agenda Martin Prince (PI) was subsequently asked to contribute a chapter for an Age International publication "Facing the facts: the truth about ageing and international development". |
| Year(s) Of Engagement Activity | 2013 |
| Description | Mexico geriatrician workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Peter Lloyd Sherlock in the course of a field trip to the Mexican site in November 2013 gave a presentation to the Latin American Academy of Medicine for Older People, attended by over 100 leading geriatric practitioners and policy-makers from the region. Ana Luisa Sosa (Mexico PI) is a leading advisor to the Ministry of Health for the development of a national dementia plan, working with the Federación Mexicana de Alzheimer and the National Institute of Geriatrics. The event helped to raise awareness of the relevance of the INDEP project to this process among key stakeholders. A series of further dissemination events are planned for August 2014 linked to the 50th Anniversary of the National Neuroscience Institute, which all INDEP PIs will attend, and this policy window. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Newspaper interviews in Peru |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The Peru PI Mariella Guerra has published a series of interviews in the Peru national broadsheet newspaper "El Comercio", the more recent examples highlighting the INDEP Project in its rural and urban catchment sites. This publicity has been linked to advocacy for an 'Alzheimer's law' mandating the Peru government to create a national plan for the prevention and treatment of dementia. With the help of Congressman Michael Urtecha, this was passed into law in October 2013. "Ley N° 1491/2012, el cual propone LA CREACIÓN DEL PLAN NACIONAL PARA LA PREVENCIÓN Y TRATAMIENTO DE ENFERMEDAD DE ALZHEIMER Y OTRAS DEMENCIAS" |
| Year(s) Of Engagement Activity | 2012 |
| Description | Nigeria World Mental Health Day (older people) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Martin Prince was guest keynote speaker at a public event organised by the State Ministry of Health in Lagos to celebrate World mental Health Day October 11, 2013. His presentation, which focused on the contribution of dementia and mental disorders to disability and long-term needs for care, drawing attention to the INDEP project and its preliminary findings http://www.ngrguardiannews.com/index.php/features/natural-health/135791-lagos-cemhri-tackle-mental-health-disorder-in-adults- The event was was widely reported on State and national radio, television and print media. It was co-sponsored by a network of 10 non-governmental organisations generating a contact resource for future dissemination and use of project findings (e.g. the 3rd Age Initiative for Elderly Rights and Welfare) |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.ngrguardiannews.com/index.php/features/natural-health/135791-lagos-cemhri-tackle-mental-h... |
| Description | Peru workshop/ symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Linked to a project field trip to Peru, we organised a well-attended symposium at the 5th World Congress of the International Association of Women's Mental Health (Lima, Peru, March 4-7, 2013). Martin Prince and Mariella Peru made presentations highlighting the INDEP project in Peru, and the research agenda on gendered aspects of caring for older people across the INDEP study countries. During the same visit, we convened a one day educational workshop in Lima comprising physicians, geriatricians, gerontologists, public health and social science researchers, and third sector representatives Increased collaboration between the INDEP team in Peru and other professional groups, particularly geriatricians and public health specialists with influence with national policymakers |
| Year(s) Of Engagement Activity | 2013 |
| Description | Project launch - Alzheimer's Disease International Conference, Puerto Rico |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | The Alzheimer's Disease International Conference is attended by people with dementia, caregivers, policymakers, health and social care professionals, and researchers. The plenary presentation by Peter Lloyd Sherlock, and a very well attended project launch symposium stimulated a lot of interest and discussion among attendees, particularly in the project film from Peru as a powerful medium of communication. Many of those present mentioned how this showed 'the reality of caregiving' which was rarely represented or discussed Many requests for copies of the film. Engagement of some important stakeholders in the dementia community with wider stakeholders advocating for improved support for older people in general, and with the ageing/ development agenda |
| Year(s) Of Engagement Activity | 2014 |
| Description | WHO seminar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | We shared information about the INDEP project with World Health Organisation staff from different departments including Ageing and Lifecourse, Mental Health and Substance use, and Non-Communicable Duseases The talk was successful in increasing levels of collaboration with the WHO Ageing and Lifecourse Department, energising our joint work on the WHO-COPE intervention package, and securing our participation in the planned 2015 WHO world ageing report. |
| Year(s) Of Engagement Activity | 2012 |