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9 September 2022

Back to the drawing board: informing dementia response in Hong Kong with policy research and data tool (Project TIP-CARD)

Doris Yu, University of Hong Kong, Hong Kong
Kayla Wong, University of Hong Kong, Hong Kong
Gloria Wong, University of Hong Kong, Hong Kong
Yingyang Zhang, University of Hong Kong, Hong Kong

Abstract

The need of an informed dementia plan is acute across areas of different resources setting. Despite being a high-income area with established service systems largely modelling on western countries, Hong Kong faces unique challenges – including very rapid ageing and rise in dementia prevalence – that mandate us to go back to the drawing board and rethink about what sustainable solutions should look like. A government research grant funded policy research project, Tools to Inform Policy: Chinese communities' Action in Response to Dementia (TIP-CARD), was launched in 2019, drawing on policy research methods designed for lower-resource settings (Strengthening responses to dementia in developing countries, STRiDE).

In this symposium, we will share the lessons learned in TIP-CARD. We will first report our findings from two Delphi studies with multiple stakeholders (n=75) and carers/persons living with dementia (n=100), to allow critical comparison for identifying ‘unattended dementia voices’ in service and policy planning. The consensus statements from the Delphi studies, together with findings from a comprehensive situation analysis, were then fed into the second research study using a theory-of-change workshop method. The theory-of-change study involved government representatives, philanthropies, carers, private and public services, and other key stakeholders (n=32) to co-develop a 10-year road map for Hong Kong. This co-developed road map was then used as a blueprint for a planned simulation modelling analysis, which also required local data input regarding cost of dementia. Our third presentation reports findings from our primary data collection study (n=750 dyads) with detailed resource utilisation of social and health care by disease stage and care settings. Finally, we will present findings from a secondary cost data analysis using population-based electronic health records retrieved from the Hong Kong Clinical Data Analysis and Reporting System of people with a dementia diagnosis (n=88,151) to investigate all-cause healthcare utilization, with specific focus on the impact of multiple long-term conditions on utilization and costs.

These findings, together with an ongoing systematic review of dementia care and interventions in Chinese populations, will form the basis of a dementia plan informed by locally relevant data co-developed with stakeholders including policymakers.

Presentation 1: Dementia voice: a key drive for dementia care planning and policy setting

Doris Yu, University of Hong Kong

Cheng Shi, Kayla Wong, Jacky Choy, Gloria Wong, Terry Lum
University of Hong Kong

Background: The dementia ‘avalanche’ urges the development of an effective policy and service framework to enhance patient and cost outcomes. Personhood is recognized as the core care principle, and dementia voices have yet to be addressed in service and policy planning.

Aims: This study aimed to identify the priorities for dementia care and policy for persons with dementia and their families, for comparison with the perspectives of stakeholders who are involved in developing dementia service frameworks.

Methods: Two Delphi studies were conducted using online surveys with multiple stakeholders (n=75) and phone interviews with persons with mild dementia (n=45) and their family caregivers (n=55), to solicit their views on priority areas for dementia service, caregiver support, care policy and the infrastructure to support care provision. For each participant cohort, content analysis was used to generate the statements for subsequent priority rating. Critical comparison of their views was conducted to identify the ‘unattended dementia voice’ in service and policy planning.

Results: Through content analysis, statements from the two participant cohorts were merged into six common themes: (1) early prevention, detection and referral systems for dementia, (2) care and intervention services, (3) health and social care workforce capacity building within and across service sectors, (4) supportive services for family caregivers, (5) development of longer-term dementia service planning and a policy framework, and (6) promotion of a dementia-friendly community. Critical comparison of their priorities indicated that dementia voices pointed to more integrated and informed healthcare, sensitive care allocation, enabling seamless social inclusion, and proactive health orientation.

Conclusion: The study findings highlight the needs of persons with dementia and family caregivers for inclusion and information in care planning, service allocation, social inclusion and disease management. Dementia voices need to be attended not only in the service and policy planning, but also in the process of implementation.

Presentation 2: Challenges, vision, and priorities in developing dementia policy in Hong Kong: findings from situation analysis and theory of change stakeholder workshop

Kayla Wong, University of Hong Kong

Hao Luo, Terry Lum, Gloria Wong
University of Hong Kong

Background: A dementia policy should be informed by evidence and the views and priorities of stakeholders. This requires a thorough understanding of the situation to provide the evidence base for formulating strategies, to serve as a baseline for future monitoring and evaluation, as well as to engage stakeholders in the policy-making process.

Aims: To assess the current situation of dementia in Hong Kong, to identify the key challenges in dementia care, and to consolidate the vision and priorities in dementia among multisectoral stakeholders.

Methods: We conducted a desk review followed by a SWOT analysis (Strength, Weakness, Opportunity, and Threat) to assess the situation of dementia in Hong Kong, covering its prevention, care, intervention, information system, research, governance, policy, workforce, and financing of these activities. Informed by these findings and the expectations and priorities in dementia, we obtained from another survey 32 stakeholders including representatives of the government, statutory and policy advisory bodies, public LTC and healthcare services, self-financing and private services, philanthropies, academics, family carers, and the media. They participated in two rounds of theory-of-change workshops to co-develop a 10-year road map of dementia and identify the priorities in achieving the stakeholders’ vision.

Results: Hong Kong has a comprehensive care system that provides needs-based universal, affordable, and territory-wide public long-term care and healthcare services. Government, philanthropies, and non-governmental organisations have been funding and implementing numerous initiatives to support dementia care. Yet, there is no clear recognised body leading the development of dementia policy and coordination of dementia care across care systems and across public and private sectors. Informal carers, including unpaid family carers and paid foreign domestic helpers, play a huge role in dementia care and are at risk of high carer burden. Key challenges identified were inaccessible services due to heavy reliance on public services and shortages in the care workforce, and inefficient resource utilisation resulting from service fragmentation and limited cross-sectoral care coordination. Multi-sectoral stakeholders agreed on two 10-year visions: 1) a dementia-friendly city where people living with dementia and carers can lead normal life and age-in-place with dignity, meaning, and quality of life, and 2) a stabilised number of people living with dementia through effective prevention. To achieve these visions, priorities were to i) design a clear primary, secondary, and tertiary triage and care path, ii) promote education on ageing/dementia and care services in schools and among general public, iii) engage neighbourhood stakeholders in dementia care, iv) enable care managers to coordinate existing resources across sectors, and v) establish small locality support with informal carers and volunteers.

Conclusion: This study incorporated most of the up-to-date dementia information for policymakers in Hong Kong and, more importantly, revealed the possibility for engaging stakeholders from diverse backgrounds. Given a shared understanding of the situation and an environment with equal status for discussion, multisectoral stakeholders could work together and reach a consensus on their vision and priorities in dementia.

Presentation 3: Costs of healthcare, social care and informal care for dementia in the community: evidence from Hong Kong

Gloria Wong, University of Hong Kong

Cheng Shi, Jacky Choy, Kayla Wong, Hao Luo, Terry Lum
University of Hong Kong

Background: Individuals with dementia and mild cognitive impairment (MCI) require an increasing level of healthcare, social care and informal care, which can lead to substantial economic costs. Understanding the economic consequences of dementia is critical for engaging the public and motivating policymakers to invest in appropriate treatment, care, support and actions.

Aims: This study investigates the average cost of healthcare, social care and informal care for people living with dementia and MCI in community care settings.

Methods: A cross-sectional study was conducted between March 2021 and February 2022 in Hong Kong, including 750 dyads of community-dwelling participants (i.e., persons with screened/diagnosed dementia or MCI and their informant). Resource utilisation of social and health care was captured by the localised Client Service Receipt Inventory (CSRI). Care time of multiple informal carers was captured by the Resource Utilization in Dementia (RUD) questionnaire. Unit costs of formal care consists of government expenditure and self-reported out-of-pocket payment. Informal care time for the activity of daily living (ADL) was valued at the replacement cost of a formal home helper, while the time for the instrumental ADL and supervision was valued using an opportunity approach.

Results: The percentages of participants with MCI, mild, moderate and severe dementia were 22%, 31%, 27%, 20%, respectively. Two-thirds (60%) have a formal diagnosis for dementia or MCI. The majority (89%) used healthcare in the past three months and 39% used social care in the past month. Half (57%) have at least two informal carers and one-third (37%) have at least two main informal carers. The average monthly informal care time of multiple carers was 400 hours per person with dementia or MCI, 40% of which are attributable to supervision, 25% to the ADL tasks and 35% to the instrumental ADL tasks. Total average monthly care costs are valued at €3,205, 77% of which are attributable to informal care (€2,349), 18% to healthcare (€583) and 9% to social care (€273). After controlling dementia severity, demographic and number of informal carers, a formal diagnosis significantly predicted higher costs in all types of care, particularly in healthcare; social care recipients had significantly higher total care costs but lower health care costs. Generally, all types of care costs increased with a higher level of dementia severity.

Conclusions: Informal care is the major cost element for community-dwelling people with dementia or MCI, particularly when including multiple informal carers. Healthcare service use is common but may be partly substituted by social care. A formal diagnosis for dementia can trigger more service utilisation in health, social and informal care regardless of the dementia severity. Better support for people with dementia and their informal carers, as well as equitable and appropriate resources allocation, are essential to address the current and future challenges of dementia.

Presentation 4: Healthcare utilization and costs associated with multiple long-term conditions among people living with dementia in Hong Kong, 2010-2019: a population-based cohort study

Yingyang Zhang, University of Hong Kong

Hao Luo, University of Hong Kong
Terry Lum, University of Hong Kong
Martin Knapp, London School of Economics and Political Science
Davide Vetrano, Stockholm University
Celine Chui, University of Hong Kong
Gloria Wong, University of Hong Kong

Background: People living with dementia often have multiple long-term conditions (or multimorbidity) that may complicate their clinical management and care.

Aims: This study aimed to quantify healthcare utilization and costs associated with multiple long-term conditions for people living with dementia.

Methods: We conducted a retrospective cohort study using population-based electronic health records retrieved from the Hong Kong Clinical Data Analysis and Reporting System including all individuals aged 35 years and older receiving a dementia diagnosis between 1 January 2010 and 30 June 2019. Outcomes were rates of all-cause healthcare utilization, i.e., hospitalizations, Accident & Emergency (A&E) department visits, outpatient visits, and their associated costs. Negative binomial regression models were used to estimate associations between multiple long-term conditions and utilization and costs.

Results: We identified 88,151 individuals (mean [SD] age, 82.9 [8.6] years; 59.3% female) with a median follow-up time of 2.5 years. People with two and eight comorbidities accounted for 81.2% and 16.0% of the total sample, respectively. Healthcare utilization and costs increased monotonically with the number of co-occurring long-term conditions. Among individuals with eight or more conditions, hospitalizations, A&E visits, outpatient visits, and healthcare costs were 2.74, 1.92, 1.48, and 2.37, respectively, compared to those with one or no long-term condition other than dementia. Chronic kidney diseases were associated with the highest adjusted rate ratios of hospitalizations (1.81), outpatient department visits (1.61), and healthcare costs (1.58), whereas chronic ulcer of the skin was associated with the highest adjusted rate ratios of A&E department visits (1.73) and the second highest rate ratios of healthcare costs (1.52).

Conclusions: Healthcare utilization and costs for individuals with dementia differed substantially by both the number of long-term conditions and the presence of some specific conditions. These findings further highlight the importance of taking account of multiple long-term conditions in tailoring the approach to care and developing healthcare and related plans for people living with dementia.


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