Beyond the project: Building a strategic theory of change to address dementia care,treatment and support gaps across seven middle-income countries

Abstract

Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22–49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process.

Keywords

theory of change low- and middle-income countries health planning

Introduction

In 2015, 46.8 million people were living with dementia worldwide (Prince, 2015). By 2050, this figure is expected to be 131.5 million, with more than two-thirds of this population living in low- and middle-income countries (LMICs) (Prince, 2015). While broad consensus exists about the importance of care, treatment and support systems for people with dementia and their unpaid carers, investment in developing these systems is inadequate in most world regions, particularly in LMICs.

The World Health Organization’s Global action plan on the public health response to dementia was unanimously adopted by Member States at the 70th World Health Assembly in 2017. Its first target is that 75% of countries will have adopted national dementia strategies or plans (NDPs) by 2025. At the end of December 2019, of the 32 member states that had NDPs, none were low-income countries and just six were middle-income countries (Alzheimer’s Disease International, 2019a). To attain its ambitious goal and address the marked variation in dementia responses between countries, the WHO published a manual for developing NDPs (World Health Organization, 2017, 2018). Research is required in addition to the WHO manual in LMICs, to develop and operationalise NDPs.

Strengthening Responses to Dementia in Developing Countries (STRiDE)

The STRiDE project aims to improve dementia care and support systems across seven middle-income countries by (1) building capacity to generate and use evidence and (2) generating evidence to understand the impacts of dementia and needs of people living with dementia and their carers, in order to (3) support the development and/or implementation of NDPs (London School of Economics and Political Science, 2020). Activities in the seven countries – Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa are led by university- or research institute-based researchers and practitioners from national Alzheimer’s or dementia associations. Other partners include Alzheimer’s Disease International and Dementia Alliance International. The overall project is led by researchers at the London School of Economics and Political Science, UK. The seven STRiDE countries were chosen because (a) there appeared to be good conditions for the project to have policy impact in those settings; (b) the co-applicants either had existing collaborations and networks or it was considered possible to establish effective collaboration between researchers and NGOs and (c) to represent a range of circumstances (population size, land mass sizes, different gross domestic product sector compositions) and degrees of progress towards meeting the challenges presented by dementia. High-income countries were not eligible. Although we aimed for geographical diversity, potential partners we had identified in the Middle East and Eastern Europe/Central Asia were not able to respond in the short space of time available to meet the application deadline for funding.

Despite the estimated prevalence of dementia among people aged 60 and above ranging from 2 to 9% (Farina et al. 2020) and the number of people living with dementia being expected to increase dramatically in the upcoming decades (Global Observatory for Ageing and Dementia Care, 2015), services in the seven middle-income STRiDE countries are few and poorly coordinated. Only Indonesia and Mexico have NDPs (Alzheimer’s Disease International, 2019a), for which funding has been limited and implementation restricted (Table 1).

Table 1.

Characteristics of countries and current dementia plans and policies.

Country	Population (millions) (United Nations Development Programme, 2018)	GDP per capita (2011 PPP$) (United Nations Development Programme, 2018)	Word Bank Income Classification (World Bank, 2020)	Age-standardised prevalence of dementia for those aged 60+ (%) (Global Observatory for Ageing and Dementia Care, 2015)	Estimated number of people living with dementia		Dementia plan or policy exists (Yes/No/in preparation) (Alzheimer’s Disease International, 2019a)	Dementia plan/policy implemented?
Country			Word Bank Income Classification (World Bank, 2020)		2015⁷	2050⁷		Dementia plan/policy implemented?
Brazil	209.5	14,283	Upper middle	8.41	1,620,000	6,581,000	No	N/A
India	1352.6	6,899	Lower middle	5.63	4,092,000	12,580,000	No	N/A
Indonesia	267.7	11,606	Lower middle	7.15	1,216,000	4,299,000	Yes	Partially implemented
Jamaica	2.9	8,266	Upper middle	7.58	17,000	49,000	No	N/A
Kenya	51.4	3,077	Lower Middle	5.47	72,000	332,000	No	N/A
Mexico	126.2	18,102	Upper middle	8.41	813,000	3,776,000	Yes	Partially implemented
South Africa	57.8	12,143	Upper middle	5.47	186,000	436,000	No	N/A

Theory of change

Theory of Change (ToC) is a planning and evaluation approach which is increasingly used to describe, develop and visually map the path to intended impact of programmes and projects (De Silva et al., 2014, Vogel, 2012). This includes the

impact or real-world change the project aims to achieve;

short-, medium- and long-term outcomes which will be achieved by the project;

activities which the project will implement to achieve these outcomes;

rationale or evidence base for why these activities are likely to lead from one outcome to the next;

assumptions about external conditions which are beyond the control of the project but necessary for the outcomes to occur;

indicators which measure whether the outcomes have been achieved and

ceiling of accountability: the point at which the project is responsible for the outcomes and after which outcomes are outside the scope of the funded project.

A ToC is often developed through workshops (Breuer et al. 2014) with all the key stakeholders in the issue being addressed. This ensures that the resulting ToC is plausible, achievable and creates a system of local accountability. The resulting ToC can have several purposes, including outlining strategic direction and monitoring and evaluating progress to impact.

Although ToC is increasingly being used to plan and evaluate health-related programmes, examples of how this can be done in practice to develop both a strategic direction for a specific area of health or social care, as well as a programme theory for a specific research project, are limited (Breuer et al., 2016). In this article, we report on the process of ToC development using workshops and the resultant ToCs for the STRiDE project. A corresponding practical guide to conducting the workshop is available (Breuer et al., 2019).

We used ToC to:

Understand the strategic direction that the countries need to take to improve dementia care, treatment and support services;

Co-develop the project across and within STRiDE countries;

Develop a monitoring and evaluation framework for STRiDE activities and

Ensure stakeholder buy-in and knowledge exchange from the outset of the project.

Stages of ToC development

There were five stages in our ToC development process which resulted in an overarching STRiDE cross-country ToC and a series of country-level ToCs (Table 2):

Table 2.

Stages of ToC development.

Stages	ToC development	Date(s)	Length	Aims	Participants	Outputs
1	Initial cross-country ToC workshop, London, UK	March 2018	1 ½ days	1. Co-develop a logical STRiDE cross-country ToC which outlines the impact and pathways to impact for STRiDE research and training	STRiDE partners (including leadership and all work package leads, country researchers and NGO representatives, Dementia Alliance International, Alzheimer’s Disease International) World Health Organisation research council UK representative	Draft STRiDE cross-country ToC monitoring and evaluation framework for STRiDE
				2. Make explicit the assumptions and evidence base underlying the ToC and STRiDE project
				3. Generate research questions to answer the assumptions and knowledge gaps
				4. Use the ToC to inform the STRiDE monitoring and evaluation framework
				5. Ensure buy-in and knowledge exchange across all STRiDE partners
				6. Build capacity of STRiDE partners to conduct ToC workshops
2	Within-country ToC workshops	April–July 2018	1-2 days	1. Co-develop country-level ToCs with stakeholders which outline the impact and pathway to impact of STRiDE	Policymakers (government) (all countries), service planners and managers (6/7 countries), representatives of professional associations (6/7 countries), service providers (all countries), researchers (all countries), community and civil society (all countries), people living with dementia (5/7 countries) and their carers (6/7 countries) (see Table 3 for details)	STRiDE country ToCs (Supplementary Appendices 1–8) narrative reports
				2. Ensure buy-in and knowledge exchange within STRiDE countries
				3. Inform contextually feasible research questions, tools, training needs, contextual barriers and facilitating factors and indicators to measure success
3	Comparison between STRiDE country and project ToCs	September 2018	2× 2 hour Skype meeting	1. Compare STRiDE cross-country ToC with country ToC maps and refine STRiDE cross-country ToC	Core team (EB, ACH, EF and MS)	Final STRiDE cross-country ToC (Supplementary Appendix 1)
4	Comparison with WHO guidelines	February 2019	1 ½ hour Skype meeting	1. Compare STRiDE cross-country ToC with WHO action plan and guidance and refine STRiDE cross-country ToC	Core team (EB, ACH, EF and MS)
5	Final review, Cape Town, South Africa	March 2019	45 min	1. Final approval of STRiDE cross-country ToC map from STRiDE partners	STRiDE partners including representatives from all STRiDE countries and chair of the International Advisory Group

Note: STRiDE: Strengthening Responses to Dementia in Developing Countries; ToC: Theory of Change.

Stage 1: Initial cross-country STRiDE ToC development workshop

We held a 2-day ToC workshop with all STRiDE partners in March 2018 (Tables 2 and 3). The aim of the workshop was to produce a visual representation (ToC map) of the pathway to achieving STRiDE’s intended impact: that people with dementia and their carers live well and do not shoulder excessive costs, risk impoverishment or health problems (Figure 1, Supplementary Appendix 1) by making explicit the short-, medium- and long-term outcomes of the project and STRiDE activities which are expected to lead to the outcomes. The workshop also provided important training to enable the teams based in STRiDE countries to conduct further within-country ToC workshops (Stage 2).

Table 3.

Number and type of stakeholders represented in STRiDE ToC workshops (one stakeholder could fall into more than one category).

	Cross-country	Brazil	India	Indonesia	Jamaica	Kenya	Mexico	South Africa
	London, UK	Sao Paulo, Brazil	Bangalore, India	Jakarta, Indonesia	Kingston, Jamaica	Nairobi, Kenya	Mexico City, Mexico	Johannesburg, South Africa
Language of workshop	English	Portuguese	English	Bahasa	English	English	Spanish	English
Dates	March 2018	June 2018	June 2018	April 2018	July 2018	June 2018	May 2018	July 2018
Length, days	1 ½	1	1 ½	1	1	2	1	2
Total number of participants (% women)	43 (72%)	31 (55%)	41 (44%)	31 (77%)	49 (88%)	35 (57%)	23 (50%)	22 (82%)
Type of participants^a
Policymakers (government)	1	1	5	7	6	7	9	5
Service planners and management	2	2	16	0	12	14	2	1
Representatives of professional associations	4	9	8	7	2	2	0	2
Service providers	13	19	26	9	13	9	14	5
Researchers	32	19	19	15	6	7	6	4
Community and civil society	15	7	10	10	13	23	5	8
People living with dementia	1	1	1	0	1	1	0	1
Carers of people living with dementia	4	3	4	1	7	4	0	3

Note: STRiDE: Strengthening Responses to Dementia in Developing Countries; ToC: Theory of Change.

^aParticipants can belong to more than one category; includes members of the STRiDE team and facilitators.

Figure 1.

STRiDE abbreviated ToC. See Supplementary Appendix 1 for full ToC. Note: STRiDE: Strengthening Responses to Dementia in Developing Countries; ToC: Theory of Change.

During the workshop, STRiDE partners identified challenges in developing appropriate care, treatment and support systems for people with dementia and their unpaid carers. Partners raised issues associated with

legal systems and understanding of ethics and human rights;

government and donor priorities, policy and politics and the availability of financial resources;

workforce and health and social care organisation;

identification of dementia, treatment and care, including end of life care;

lack of research evidence;

expectations of familial care (often ‘informal’ or ‘unpaid’) and other social norms;

lack of knowledge, shame and stigma associated with dementia and

the lack of involvement of people living with dementia in decision making.

We discussed STRiDE’s intended impact, as set out in the initial grant proposal that people with dementia and their carers live well and do not shoulder excessive costs, risk impoverishment or health problems, and after discussion agreed that this was a suitable impact statement for the STRiDE ToC. Then, working in small across-country groups, we considered the steps (outcomes) to achieve this impact in light of these challenges. Outcomes were mapped onto a ToC map, and connections between them were identified. We mapped both outcomes that needed to be achieved by STRiDE and those which were necessary to achieving the impact beyond STRiDE. This resulted in two distinct sections of the ToC, separated by the ceiling of accountability. The STRiDE activities, divided into ten work packages, which are expected to lead to the outcomes, were then additionally mapped.

After the first workshop day, the ToC model developed by hand was drawn electronically by EB and reviewed by a core group of authors (EB, ACH, EF and MS). This model was then distributed to workshop participants in the second workshop day. Again, working in small groups, participants reviewed the model, gave feedback on items and relationships as drawn, checked the logical plausibility of the ToC and highlighted the assumptions implicit in it. Finally, participants discussed how the outcomes which would be achieved by STRiDE could be measured. The indicators identified were refined after the workshops and are now being used to regularly monitor and evaluate the STRiDE project (see Supplementary Appendix 1 for details).

Stage 2: Within-country STRiDE country ToC development workshops

We held a single 2-day ToC workshop in each of the STRiDE countries between April and July 2018 (Tables 2 and 3). Workshops were facilitated by STRiDE teams based in each country, with support from the core ToC team where requested.

Within-country workshops were similarly structured. All began with a formal welcome and introductions to participants, the dementia situation within the country, the STRiDE project and the ToC process. Initially working in small groups, participants considered country-specific challenges related to dementia, followed by the potential impact of STRiDE. Country workshops afforded opportunity to assess, verify and revise the STRiDE impact statement agreed on at the cross-country workshop, ensuring the project is locally relevant. For example, in Kenya, participants felt the impact was too broad, so explicated it accordingly to achieve improved dementia prevention, care, treatment and support systems so that people with dementia, carers and family have highest possible well-being and functional ability.

As in the cross-country workshop, the within-country workshops focused on pathways to achieving impact within and beyond STRiDE, as well as the contribution of STRiDE activities to that impact. In some countries, additional sessions in the workshop aimed to help participants clearly understand local context and the extent of dementia care services. For example, in India, we wanted to ensure our ToC reflected the existing research, care and services addressing dementia, so invited stakeholders to speak about their own work.

Despite the different social, political, economic and health systems and norms in the seven STRiDE countries, many of the key workshop discussions were similar. Recurring themes were

lack of government commitment and leadership;

the need for evidence-based dementia care programmes;

the need for earlier diagnosis;

inadequate long-term care systems;

the importance of including people living with dementia in decision-making;

poor knowledge of dementia;

the stigmatisation of dementia and

reliance on gendered informal care (typically female and family-based) (see Table 4, Supplementary Appendices 2–8).

Table 4.

Themes covered by outcomes in the STRiDE ToCs. Black dots refer to themes represented before the ceiling of accountability and the white dot after the ceiling of accountability.

	STRiDE cross-country ToC	Country ToC
	STRiDE cross-country ToC	Brazil	India	Indonesia	Jamaica	Kenya	Mexico	South Africa
Outcome themes
Project functioning	●
Research capacity	●
Evidence	●	●	●	●	●	●○	●○	●
Knowledge, awareness and knowledge exchange	●	●	●	●	●○	●	●	●
Collaboration between multiple stakeholders	●	●		○	●○	●		●
Inclusion of people living with dementia and stigma	●○	●	●○	●	●○	●	○	○
Policy and plans	○	○	○	○	○	●○	○	●○
Accountability, data and monitoring	○	●○	○	○		●○	○	○
Prioritization of dementia and political will	○	○		●	●○		●	○
Government leadership	○	○	●				○
Financing	○	○					○	○
Health and social care systems and guidelines	○		○	○	○	●	○
Workforce and training	○	○	○	○			○
Identification and treatment/care	○	●○	●○	○	○	●○	○	○
Unpaid care	○	○	●○	○
Impact(s)	1) People with dementia and their carers live well and 2) people with dementia and families do not shoulder excessive costs, risk impoverishment or health problems	People with dementia, their carers and families live and die well	To contribute to reducing risk, improving dementia diagnosis, management and support systems, so that people with dementia are able to live well and that their family, carers and society are protected from excessive costs and health problems and 3) carers of people living with dementia have the capacity and are supported to provide quality care for people living with dementia	People with dementia, carers and family are able to live well	1) People living with dementia and their carers live optimally, 2) people living with dementia and their carers do not shoulder excessive financial burden (e.g. they access affordable formal and informal healthcare) and 3) carers of persons living with dementia have the capacity and are supported to provide quality care for persons living with dementia	Improved dementia prevention, care, treatment and support systems so that people with dementia, carers and family have highest possible well-being and functional ability	1) People with dementia and their carers live well and 2) people with dementia and families do not shoulder excessive costs, risk impoverishment or health problems	1) The ability of people with dementia to live a meaningful and dignified life is maximised and2) family and carers have the necessary support and resources for well-being and to be protected from undue financial hardship

Note: STRiDE: Strengthening Responses to Dementia in Developing Countries; ToC: Theory of Change.

As illustrated, despite similarities, some issues were salient only in particular countries. For example, the inequitable distribution and funding of services across private and public sectors was raised most strongly by the Brazilian workshop participants; only South African and Kenyan participants noted understandings of witchcraft and dementia as a dominant concern.

In most countries, the ToC workshop was the first multisectoral forum relating to dementia, which allowed stakeholders to exchange perspectives and work together towards one objective. In five countries (Brazil, India, Jamaica, Kenya and South Africa), the workshop was the first forum to have included people living with dementia, an important milestone in the inclusion of people living with dementia in care planning. The continued engagement and perspectives of stakeholders in the STRiDE project was secured by inviting some workshop participants to become part of National Advisory Groups. The role of these groups is to advise on the feasibility and relevance of STRiDE activities in each country, holding teams accountable for their activities and advocating for local dementia research and initiatives.

Following the workshops, ToCs were finalised by teams based in each country, with support from the core international ToC team. A ToC and a narrative report of the process were produced in each country (see Supplementary Appendices 2–8).

Stage 3: Comparison between STRiDE cross-country ToC and national ToCs

The core ToC team reviewed country ToCs and narrative reports to ensure that the overall STRiDE cross-country ToC reflected national priorities and pathways. These were discussed via two teleconferences, and changes were made to the cross-country ToC. Changes included phrasing and connections between outcomes. For example, People with dementia are seen as individuals and enabled to continue to contribute actively to society, make choices and to live with dignity was changed to People with dementia are empowered to seek help early, be seen as individuals and enabled to continue to contribute actively to society, make choices and to live and die with dignity.

Stage 4: Comparison between STRiDE cross-country ToC and WHO guidance

The core ToC team next reviewed the project ToC against the Global action plan on the public health response to dementia 2017–2025 (World Health Organization, 2017) and Towards a dementia plan: a WHO guide (World Health Organization, 2018) to ensure that outcomes were in alignment. Required changes were minor, consisting mainly of clarifying the wording of outcomes. The only aspect of the WHO guidance not reflected in the STRiDE cross-country ToC is primary prevention and cure. Participants at the initial cross-country workshop considered these to be beyond the scope of the project and its ToC.

Stage 5: STRiDE cross-country ToC final review

The draft STRiDE cross-country ToC was presented to all partners and the chair of the STRiDE International Advisory Group at the project’s Annual Meeting in March 2019. The final ToC, outlined below, reflects additional minor changes suggested by the group. For example, adding the word assessment to Policymakers across sectors is convinced that actions to improve dementia prevention, assessment, care, treatment and support are a priority. In order to compare the ToCs across countries, we developed themes which grouped several outcomes together (Table 4).

Final STRiDE cross-country ToC

The final STRiDE cross-country ToC (Figure 1 and Supplementary Appendix 1) is divided into two distinct sections by the ceiling of accountability (the point after which the project is no longer responsible for achieving the outcomes). On the left of the ceiling of accountability is the STRiDE project ToC and on the right is the ToC of what will be needed in STRiDE countries to build on the project’s outcomes and activities so that people with dementia and their carers live well.

STRiDE project ToC

The left side of the ceiling of accountability resembles a standard project ToC, outlining the outcomes STRiDE is responsible for achieving related to the following themes: project functioning, research capacity, evidence, knowledge, awareness and knowledge exchange, collaboration between multiple stakeholders and inclusion of people living with dementia and stigma (Table 4). It outlines activities (STRiDE work packages) which will ensure that the project achieves its outcomes. This section of the ToC forms the basis of the monitoring and evaluation framework for STRiDE (see Figure 1 and Supplementary Appendix 1).

ToC for the strategic direction for dementia care, treatment and support in LMICs

To the left side of ceiling of accountability, the ToC describes the hypothesised outcomes necessary for STRiDE countries to build on the project’s outcomes and activities so that people with dementia and their carers live well. This can also be seen as a ToC for developing and implementing government-led NDPs. Outcomes in this section of the ToC can be categorised into the following themes: inclusion of people living with dementia, stigma, policy and plans, accountability, data and monitoring, prioritization of dementia and political will, government leadership, financing, health and social care systems and guidelines, workforce and training, identification and treatment/care and unpaid care. Within this section, the evidence and recommendations generated by the STRiDE work packages are mapped as the rationale underpinning the ToC.

Like the cross-country ToC, each within-country ToC has two distinct sections divided by a ceiling of accountability. The first section (to the left of the ceiling of accountability) outlines the activities and outcomes which are the responsibility of the STRiDE project, and the second section identifies the outcomes required to develop adequate dementia care and services nationally. These are the responsibility of the governments in the STRiDE countries but will be informed by evidence generated by STRiDE. Major themes reflected in the STRiDE country ToCs include evidence, knowledge awareness and exchange, inclusion of people living with dementia, dementia policy and plans, accountability, governance, data, treatment and care. Table 4 compares the outcome themes and impacts across STRiDE country and cross-country ToCs.

Lessons learned

ToC can be used to develop a common vision for dementia care, treatment and support among diverse stakeholders

The ToC approach helped the STRiDE team to co-develop a common vision of the strategic direction for dementia care and services in middle-income countries. STRiDE partners come from different world regions (Europe, The Caribbean, Central and South America, Sub-Saharan Africa and Asia), different fields (economics, epidemiology, demography, geriatrics, neurology, mental health, policy, health services research and long-term care research), national and international Alzheimer’s and dementia associations and people living with dementia, among others. Within-country workshops brought together national stakeholders who, by design, were external to STRiDE. The series of ToC workshops required all participants to pool knowledge about challenges related to dementia as well as previous experiences in their field and work together to identify steps to mitigate these challenges both within and beyond the scope of STRiDE.

Because the ToC workshop is a structured event with the specific goal of developing a ToC map, it gives stakeholders a sense of purpose and direction. The task-orientated nature of the ToC workshops encouraged participants to maintain focused discussions. Where possible, the structure of the workshops facilitated the active participation of people living with dementia and their carers.

The proposed contribution of the project and broader strategic direction for dementia care, treatment and support should be clearly delineated

A risk and a strength of the ToC approach are the necessity for stakeholders to think broadly and creatively about achieving an impact. Participants at both cross-country and within-country ToC workshops developed ambitious ToCs outlining the strategic direction for dementia over the longer term. However, since STRiDE is a 4-year project with specific research and capacity-building objectives, its role needed to be clearly delineated. This was particularly important in the country workshops with ‘external’ participants who expected STRiDE to have a larger role. We used our ceiling of accountability to clearly delineate STRiDE, government and NGO responsibilities for treatment, care and support for dementia. The workshops have already prompted action by Government and NGO stakeholders to establish a National Dementia Working Group in South Africa and to develop a national dementia plan in Kenya.

People living with dementia should be included in ToC workshops in LMIC, but additional support will be required

The rights of people living with dementia and their carers to participate in research and programme planning as ‘experts by experience’ is increasingly being recognised in many high-income countries (Gove et al., 2018). This has not been common in the seven middle-income STRiDE countries. Reasons for this include low societal awareness of dementia, late-stage diagnosis when the person living with dementia has severely reduced functional abilities (Prince et al., 2016), high levels of stigma-related to dementia (Herrmann et al., 2018) (Alzheimer’s Disease International, 2019b) and non-disclosure of dementia diagnosis (Raicher et al., 2008).

We invited people living with dementia to all our ToC workshops but were unable to secure their participation in two of the country workshops due to stigma-related concerns from people living with dementia about sharing their diagnosis and experiences in public. As noted above, workshops were structured to facilitate the active participation of people living with dementia and their carers (e.g. using small groups and specifically eliciting input). In India, a psychologist was paired with the participant living with dementia and their carer throughout the workshop to encourage participation and monitoring for signs of stress. On the other hand, in Jamaica, the participant with dementia was given the freedom to observe and participate in workshop activities before choosing whether or not to disclose their diagnosis. The participant later decided to address the workshop and to take questions.

Conclusion

Our experience of using the ToC approach in STRiDE highlights how ToC can provide a framework to foster international multidisciplinary collaboration to outline a strategic direction for dementia care and policy. We used ToC workshops to bring together diverse stakeholders, including people living with dementia, in order to develop both a common vision for, and buy-in to the STRiDE project and broader dementia care, as well as to help clearly delineate the areas for which STRiDE is accountable. Additional strategies may be needed to ensure appropriate participation from people living with dementia and their carers in the ToC process. The ToC approach, using the STRiDE ToC as a starting point, could provide governments in LMICs an approach to inclusive planning with and for people living with dementia to understand how to ensure that people with dementia live well.

Supplemental Material

sj-pdf-1-dem-10.1177_14713012211029105 – Supplemental Material for Beyond the project: Building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries

Supplemental Material, sj-pdf-1-dem-10.1177_14713012211029105 for Beyond the project: Building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries by Erica Breuer, Adelina Comas-Herrera, Emily Freeman, Emiliano Albanese, Suvarna Alladi, Rochelle Amour, Sara Evans-Lacko, Cleusa P Ferri, Ishtar Govia, Claudia Iveth Astudillo García, Martin Knapp, Michael Lefevre, Mariana López-Ortega, Crick Lund, Christine Musyimi, David Ndetei, Deborah Oliveira, Tiffany Palmer, Meera Pattabiraman, Tara Puspitarini Sani, Dubglas Taylor, Eileen Taylor, Imelda Theresia, Priya Treesa Thomas, Yuda Turana, Wendy Weidner and Marguerite Schneider in Dementia

Footnotes

Acknowledgements

We acknowledge all the contributions of all the stakeholders who attended the STRiDE ToC workshops and gave input into the STRiDE ToC development process.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1). WW and ML are employed by Alzheimer’s Disease International (ADI) which receives funding from several pharmaceutical companies (see for details). The funding is related to the work of STRiDE, and the STRiDE work is not directly relevant to ADI’s funders. WW received honoraria from Eisai and Roche for presentations outside the submitted work.

Patient and public involvement

The planning process described in this article involved people living with dementia, their carers and members of non-governmental organisations. Representatives of these groups were involved in the workshops, providing feedback and the writing and reviewing of this paper.

Ethical approval

This article does not include research on human subjects, and therefore, we did not obtain ethical approval.

ORCID iDs

Erica Breuer

Adelina Comas-Herrera

Michael Lefevre

Christine Musyimi

Deborah Oliveira

Priya Treesa Thomas

Supplemental Material

Supplemental material for this article is available online.

Erica Breuer (PhD, MPH (Epidemiology)) is a Post-doctoral Research Fellow at the University of Newcastle. Dr Breuer is a public health researcher with skills and expertise in mental health, health services research, prison health, monitoring and evaluation and theory driven evaluation.

Adelina Comas-Herrera is an Assistant Professorial Research Fellow within CPEC at LSE and co-leads the STRiDE project. She is a consultant for the WHO, working on the development of a tool for countries to self-evaluate their long-term care systems. She has previously worked on making projections of future long-term care expenditure for the United Kingdom and other countries and also on evaluating the potential role of private insurance and private/public partnerships in long-term care financing.

Emily Freeman is Assistant Professorial Research Fellow at the Care Policy Evaluation Centre, London School of Economics and Political Science. Her multidisciplinary research is positioned at an intersection of social science approaches to understanding health, ageing, gender and development.

Emiliano Albanese is physician with an FMH in public health, an MSc in public health and an MD-PhD in clinical neuropsychology. He is Assistant Professor of public mental health in the Department of Psychiatry and Director of the WHO Collaborating Center for Research and Training in mental health at the University of Geneva. The focus of his research is cognitive ageing and dementia and their epidemiology from a broad public health and evidence base perspective.

Suvarna Alladi is a Professor of Neurology at the National Institute of Mental Health and Neurosciences, Bangalore, India. Her work in dementia has focused on developing and adapting cognitive tests in different languages, to enable early diagnosis of dementia in the Indian cultural context. Her research also involves investigating the complex influence of life-course experiences especially bilingualism, education and social engagement in order to better understand how resilience can be developed against dementia.

Rochelle Amour (MSc Gerontology) has worked in ageing and mental health for the past 10 years, with a focus on policy and communications. As a certified creative and cultural specialist, she leads knowledge exchange and translation efforts for academic and corporate projects. She is passionate about making research accessible and practical for stakeholders, which guides her contributions to grant proposal development. Rochelle is based at the University of the West Indies, Mona.

Sara Evans-Lacko is an associate professorial research fellow at the Care Policy and Evaluation Centre, London School of Economics and Political Science, UK. She is a mental health services researcher with a particular interest in the role of health services and social support in the prevention and treatment of mental illness. Her research focuses on developing innovative methods to improve access to and quality of mental health care for young people and the evaluation of public health interventions.

Cleusa P Ferri is a psychiatrist and epidemiologist, and a professor in the post-graduation programme of the Psychobiology Department at the Universidade Federal de Sao Paulo, Brazil. She has returned to her home country, Brazil, where she continues to carry out research, leading the INDEPI-BR study, which focuses on the epidemiology of dementia and care provision for late-life mental disorders within the context of the limitations and possibilities of the current public Brazilian health system (SUS – Sistema Unico de Saude).

Ishtar Govia is a Senior Lecturer in Epidemiology with the Caribbean Institute for Health Research at the UWI Mona Campus. Her methodological areas of expertise include qualitative; mixed methods; equitable co-production; design, development and evaluation of complex interventions. Her substantive areas include social determinants of health; shared risk and protective factors; context-, lifespan- and gender-sensitive holistic and integrated approaches for prevention and management of NCDs, especially mental and neurological conditions, dementia and cardiovascular disease.

Claudia Astudillo-García, a researcher in medical sciences, affiliated to the Psychiatric Care Services of the Ministry of Health, Mexico, collaborator of the STRiDE project ‘Strengthening Responses to Dementia in Developing Countries’ in partnership with the National Institute of Geriatrics of Mexico, PhD in public health sciences and Master in Psychology. Her lines of work are focused on Mental Health Epidemiology, methodology and information analysis, as well as training of human resources in mental health.

Martin Knapp is Professor of Health and Social Care Policy at the London School of Economics and Political Science (LSE), based in the Health Policy Department. He is a Professorial Research Fellow in the Care Policy and Evaluation Centre (CPEC; formerly PSSRU) at the LSE. In addition, since 2009, Martin has been Director of the School for Social Care Research, part of the National Institute for Health Research (NIHR) in England.

Michael Lefevre is General Manager of Alzheimer’s Disease International (ADI). Since joining the charity in 1998, he has worked across a number of areas as ADI’s team has grown and changed over the years. Michael gained a degree in maths and computer science from the University of Sussex has worked in roles in IT support, data analysis and financial administration.

Mariana López Ortega holds a PhD in Public Health and Policy from the London School of Hygiene and Tropical Medicine (2010) and Master in Public Policy from the University of Chicago (1997). She works as a researcher at the National Institute of Geriatrics, Mexico. Her research includes disability, long-term care, social support systems for older adults, social and economic determinants of ageing, the value of unpaid care and policies and models of care for older adults.

Crick Lund, BA (Hons), MA, MSocSci (Clinical Psychology), PhD, is Professor of Global Mental Health and Development in the King’s Global Health Institute, Health Services and Population Research Department, Institute of Psychiatry, Psychology and Neuroscience, King’s College, London, and Professor in the Alan J. Flisher Centre for Public Mental Health at the University of Cape Town. His research interests include mental health policy and planning and the relationship between poverty and mental health in low- and middle-income countries.

Christine Musyimi is a researcher at the Africa Mental Health Research and Training Foundation (AMHRTF). She promotes excellence in community-based mental health research with a focus on dementia, depression and intimate partner violence. She is a researcher on the Strengthening Responses to Dementia in Developing countries (STRiDE) project and has been the Principal Investigator for several projects aimed at training non-mental health specialists to deliver evidence-based mental health care to increase access in community settings.

David M. Ndetei: MBChB; MD; DSc; Professor of Psychiatry, University of Nairobi, Kenya and the founder and director of the Africa Mental Health Research and Training Foundation. He has served as the PI/Co-I for most Kenyan published clinical and community epidemiological studies on mental health and substance abuse. He has over 350 scholarly publications, authoring 6 books and 21 monographs – on psychiatry and mental health.

Déborah Oliveira (RN, MSc, PhD) is a Senior Researcher for the STRiDE research programme (Strengthening Responses to Dementia in Low- and Middle-Income Countries: ). She is an external adviser for the mDementia initiative and a consultant on long-term care for the World Health Organization. She has experience on qualitative and quantitative research on ageing, dementia, health promotion, long-term care and public health.

Tiffany Palmer (MSc Clinical Psychology, University of the West Indies, Mona) is a clinical psychology associate and researcher who specialises in qualitative project management and coordination. With mental health as her central interest, Tiffany’s work helps to ensure that projects are designed and executed for real-world impact. Her specialist approach to supporting group participant processes involves stakeholder engagement and collaboration at various levels, as well as tailored knowledge translation and dissemination.

Meera Pattabiraman is the Chair of the Alzheimer’s and Related Disorders Society of India (ARDSI) and has been associated with the organization for over 24 years. She has been a major contributor to dementia advocacy in India including developing a Memorandum of Understanding with the Kerala Government for the Kerala State Initiative on Dementia. She is board member of Alzheimer’s Disease International and a member of the World Dementia Council.

Tara Puspitarini Sani is a researcher and lecturer at the Neurology Department, School of Medicine and Health Sciences, Atma Jaya Catholic University of Indonesia and the Research Coordinator of Alzheimer’s, Indonesia. She did an MSc in Dementia: Causes, Treatments and Research in UCL Institute of Neurology, UK, and volunteered for St. Joseph’s Hospice during her time in London. She is currently working on the Strengthening Responses to Dementia in Developing Countries (STRiDE-Dementia) multinational research project.

Dubhglas Taylor (MSc) is a retired social worker. Together with his wife, Eileen Taylor, he has presented at national and international conferences and workshops and is actively involved as a dementia advocate with Dementia Australia and Dementia Alliance International. He is a dementia consumer advisor for the Brisbane Metro South Health PHN and two local Brisbane hospitals a co-founder of the Dementia Awareness Advocacy Team, together with his wife, Eileen Taylor.

Eileen Taylor (MS Hons) is a retired social worker. Together with her husband, Dubhglas Taylor, she is actively involved as dementia advocate presenting nationally and internationally at conferences and workshops. She is the vice-chair of their advisory committee for Dementia, Australia, a board member for Dementia Alliance international and a consumer advisor for the Brisbane Metro South Health Public Health network and two local Brisbane hospitals, including several community dementia alliances groups promoting dementia friendly communities.

Imelda Theresia has extensive experience in project management and project implementation for social protection and awareness-raising programme on various issues including older people issue, especially dementia Alzheimer’s for numerous donors and agencies. She is currently working in research and scientific division at Alzheimer Indonesia, and involved in the Strengthening Responses to Dementia in Developing Countries (STRiDE-Dementia) multinational research project as an early career researcher.

Priya Treesa Thomas is an Associate Professor of Psychiatric Social Work at the National Institute of Mental Health and Neurosciences, Bangalore. She was awarded PhD in Psychiatric Social Work from NIMHANS Bangalore in 2011, for her work with family caregivers of children with Duchenne Muscular Dystrophy. In NIMHANS, her work focuses on contributing to the routine care of patients and families of the neurologically ill and is specially interested in supporting culture specific long-term care for dementia.

Yuda Turana is lecturer and researcher of the Department of Neurology, School of Medicine, Atma Jaya Catholic University of Indonesia. He is Chairman of the Neurogeriatrics Study Group of the Indonesian Society of Neurologists, on the Board of Trustees of Alzheimer’s Indonesia and on the Advisory Board of ADI Asia Pacific. His research activities focus on biomarkers and clinical markers of cognitive decline and Alzheimer’s disease.

Wendy Weidner is the Research and Policy Project Lead for Alzheimer’s Disease International (ADI) where she leads on all research and organises ADI’s Medical and Scientific Advisory Panel. Wendy leads ADI’s participation in the STRiDE project in partnership with the London School of Economics and Political Sciences (LSE) Care Policy and Evaluation Centre (CPEC), international university partners and Alzheimer associations in seven countries in Asia, Africa and the Americas.

Marguerite Schneider is an Associate Professor in the Alan J. Flisher Centre for Public Mental Health at the University of Cape Town. She has extensive experience in applied disability studies and public mental health research. She has published on disability measurement, the intersection of disability, poverty and social protection and in public mental health. She is an active member of the Washington Group on Disability Statistics since 2002 and is the co-chair of the Psychosocial functioning measures workgroup.

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