Isabelle Vullings

Summary

Evaluating ageing-in-place reforms
developing policy assessment tools and understanding care preferences of older adults and informal caregivers in the Netherlands

The overall aim of this thesis was to develop a system-level framework for the evaluation of ageing-in-place (AIP) reform policies, whilst capturing the preferences and needs of older adults and informal caregivers ageing in place. Chapter 1 described that the rapid ageing of the world population and corresponding rising long-term care (LTC) demand and costs are pressuring the LTC systems. Many Organisation for Economic Cooperation and Development (OECD) countries, including the Netherlands, have reformed their LTC systems in response, promoting ageing in place as a cost-saving alternative to institutionalised care. AIP reform policies commonly aim to shift care form institutional towards home- and community based settings, encouraging older adults to live at home for as long as possible with the support of informal caregivers.

Whilst ageing in place is often presented as a win-win solution, cost-saving and aligned with the preferences of older adults who commonly wish to continue living at home, it is important to assess whether ageing in place is fulfilling this policy ideal and what the potential societal implications are. From a system-level perspective, it is important to evaluate whether the goals of AIP reform policies are met, including whether these reforms are genuinely cost-saving, and what their impacts are on the demand for LTC, the utilisation of care services, and the continuity of care. From an individual-level perspective, it is important to assess the impact of AIP reform policies on the wellbeing of older adults and informal caregivers. Despite ageing in place being in line with their preferences, factors such as declining physical health, cognitive impairment, and a diminishing social network can affect their ability to live independently at home. When appropriate care is not provided, this may increase the risk of loneliness or crisis situations such as unplanned hospitalisations or falls. It is therefore important to identify the AIP needs and preferences of older adults and informal caregivers, including those of underrepresented groups such as persons with dementia and persons with a migration background, who have distinct care needs yet are frequently excluded from research and policy development. Persons with dementia often experience complex and evolving care needs, while persons with a migration background are at increased risk of developing dementia and have a higher prevalence of chronic conditions.

In the first part of this thesis, AIP reform policies were approached from a system-level perspective through the development of an assessment framework. The framework was developed to align with underlying policy objectives and incorporate a broad set of performance indicators covering health system structures, processes and outcomes.

As a first step towards building this AIP policy assessment framework, we reviewed the international literature to identify performance indicators used for AIP reform evaluation in Chapter 2. We included 58 articles that described one or more performance indicators in relation to a (sub)national AIP reform. Many of the included articles (28, 48.3%) reported performance indicators relating to the input of the health system, covering 71 nonunique indicators in the domains of expenditures, care availability, and workforce. In addition, many articles (36, 62.1%) discussed indicators related to the delivered care services, comprising of 80 indicators covering domains of care utilization, care service quality, and care satisfaction. In contrast, fewer articles (20, 34.5%) reported indicators demonstrating the impact on patients and society, with 34 indicators split between two domains: health status and informal caregiver burden. Even though some identified indicators are similar to those included in existing Health System Performance Assessment (HSPA) frameworks, others are more specific for ageing in place. For example, indicators related to the shift in costs from institutional care to home and community-based care, or informal caregiver burden and well-being. However, overarching developments such as the scarcity in healthcare professionals or the diversification of the older adult population might require additional performance indicators related to health equity.

Building on the findings from our review, Chapter 3 focused on assessing the actionability of identified performance indicators in the Dutch policy setting. We conducted a Delphi study with a diverse panel of AIP experts, including policymakers or advisors, researchers, healthcare professionals, older adults, and informal caregivers, to develop a context-specific set of actionable performance indicators for evaluating AIP reforms in the Netherlands. Consensus was reached on 53 indicators across 10 domains (older adult health status, informal caregiver burden, health inequalities, care satisfaction, person-centered care, care availability, coverage of care, care utilization, workforce, and financing), resulting in a comprehensive framework that places the needs and preferences of those ageing in place at is centre, whilst capturing the health system resources, healthcare services, and a broad range of outcome-oriented indicators. These findings highlighted a need to reorient AIP evaluation frameworks towards a stronger emphasis on the outcomes for older adults and informal caregivers, such as wellbeing, mental health, informal caregiver burden, and health inequalities. Commonly used quality of care indicators were considered less actionable for ageing in place, reflecting a tension between risk prevention and prioritising quality of life and autonomy in the care for older adults. Furthermore, capturing people’s needs and preferences in standardised performance indicators was considered challenging, pointing to the need for complementary approaches to better capture the diverse and evolving preferences of older adults and informal caregivers ageing in place.

In the second part of this thesis, we focused on identifying the AIP preferences of older adults and informal caregivers, providing evidence from an individual-level perspective. Special attention was given to underrepresented groups with distinct care needs, including persons with dementia and persons with a migration background, who are frequently excluded from research and policy development despite being disproportionately affected by AIP reform policies. Qualitative methods were used to gain a deeper understanding of the experiences of those ageing in place, giving a voice to those directly affected by AIP reform policies. This evidence informed the development of future Discrete Choice Experiments (DCEs) to quantify AIP preferences, ultimately providing policymakers with guidance for person-centered policy development and service planning.

In Chapter 4, a methodology was developed to design DCEs identifying AIP preferences, applicable to different populations such as older adults, people with dementia, and their informal caregivers. DCEs present participants with a series of hypothetical choice scenarios, asking them to select their preferred option based on key care services (attributes) and characteristics of care service delivery (attribute levels), thereby capturing how people value and prioritise different aspects of care. To identify the most relevant characteristics and their levels, semi-structured interviews were conducted to explore participants’ daily experiences and the types of care and support they considered important for ageing in place, followed by focus group discussions to further refine and prioritise these findings. The final DCE consisted of three rounds, one for older adults or persons with dementia, one for informal caregivers, and a joint round capturing shared preference. The outcomes provided insights into the relative importance of different care characteristics. Beyond generating population-level data on what care services people value, the qualitative components of this methodology provide important in-depth insights about the experiences of those ageing in place. To ensure that the methodology was inclusive and able to capture the AIP preferences of diverse populations, specific strategies were presented to include underrepresented and underserved groups such as persons with dementia and persons with a migration background. We explained the importance of assembling a diverse research team, building trusting relationships, collaborating with local community organisations serving these populations, and seeking advice from experts in health inequalities an inclusive care.

We provided more in-depth insight in the experiences and needs of Dutch persons with dementia and informal caregivers ageing in place in Chapter 5. Semi-structured interviews were conducted with persons with dementia (N=5) and informal caregivers (N=14) to identify important components of care and support that enabled ageing in place. Five themes were identified, including the need for informal support from a social network, formal care, information about dementia, emotional support, and help navigating the healthcare system. The informal caregivers of persons with dementia assisted them with a variety of activities of daily living that fell outside of the scope of formal caregivers, such as doing groceries, accompanying them to appointments, or administrative tasks. In addition, persons with dementia frequently used formal care services including daycare facilities, home care, meal services, and case management. The experiences with case management were mixed, as some participants considered their case managers to be highly involved in coordinating care and attending to person needs, whilst others were perceived less engaged, leaving informal caregivers and persons with dementia uncertain about what support hey could expect. Informal caregivers expressed a need for emotional support and information about how to cope with the behavioural changes of the persons with dementia. Finally, the dementia care system was considered complex and fragmented, with informal caregivers expressing that they found in hard to navigate the system and organise care and support.

In Chapter 6 we presented the AIP preferences of persons with dementia (N=8) and informal caregivers (N=20) with a migration background through another interview study. The findings highlighted that informal caregivers felt a strong responsibility and sense to duty to care for their relatives with dementia. They assisted them with a variety of daily tasks, including personal care such as showering, getting dressed, or cleaning the house. Whilst informal caregivers expressed positive associations and feelings of fulfilment from the provision of care, they also experienced a considerable caregiving burden that led to the desire to share care with professionals. However, linguistic barriers, less familiarity with the healthcare system, and a lack of culturally sensitive care services made it harder to formulate concrete needs or access services. The proactive involvement of professionals is needed to build trust and identify opportunities to integrate formal care and support options, lowering the burden for informal caregivers. It was emphasized that care services such as daycare facilities, in-home care, and information about dementia need to be culturally sensitive to be beneficial for persons with a migration background. Even though the identified key components of care and support aligned with our previous study on Dutch persons with dementia (chapter 5), differences exists in how these services must be shaped for different populations to benefit from them.

Chapter 7 described the findings of our mixed-methodology developed to identify and later quantify the AIP preferences of older adults and their informal caregivers. We recruited a heterogeneous sample of older adults and informal caregivers with variation in socioeconomic status, educational background, frailty, living situation, and cultural background. Through semi-structured interviews and focus group discussions with a ranking exercise, five attributes with corresponding levels were identified for use in a future DCE. The five attributes covered: housing, reflecting options to adapt the living environment such as home modifications, moving to a smaller apartment, or relocating to communal housing; personal care and household support, with levels capturing different frequencies; social activities, ranging from daycare attendance and local clubs to home-based social visits; and navigating the healthcare system, with levels reflecting support from different professionals such as a practice nurse, case manager, or contact persons from the health insurer. Beyond informing the development of our DCE, these finding provide valuable insights into the diversity of AIP preferences and experiences. Notably, cultural sensitivity emergers as an important prerequisite for the relevance of care services, as persons with a migration background indicated that they would not benefit from services designed for persons with different cultural or linguistic backgrounds. This underlines the importance of inclusive sampling in DCE development, to ensure that resulting preference data meaningfully reflects the diversity of AIP needs present in society.

Chapter 8 presented a general discussion, reflecting on main findings, and providing implications for policy, practice, and research. The findings underline the need to move beyond fragmented monitoring efforts towards a more systematic evaluation of AIP reform policies, incorporating actionable performance indicators across health system inputs, service delivery, and outcome-oriented domains such as informal caregiver burden, mental wellbeing, and health inequalities. The consensus-based, context-specific framework developed in this thesis demonstrates how evaluation approaches can be aligned with policy objectives whilst remaining adaptable to specific policy contexts. At the same time, person-centered care proved difficult to capture through standardised indicators alone, pointing to the value of complementary approaches such as DCEs and qualitative methods to identify and understand the diverse and evolving preferences of older adults and informal caregivers. From our qualitative studies, it became clear that opportunities for ageing in place are not equally distributed, differences in income, housing, social networks, and cultural backgrounds shape both the ability to remain safely at home and the range of support available. This underlines that policies failing to account for this diversity risk deepening existing inequalities. Taken together, the findings of this thesis demonstrate that to support suitable, equitable, and person-centered LTC systems, a more comprehensive and inclusive evidence base is needed for AIP reform evaluation that combines system-level performance assessment with a deeper understanding of the experiences and preferences of those ageing in place.