Using Big Data to Estimate Dementia Prevalence in New Zealand: Protocol for an Observational Study (Preprint)

BACKGROUND Dementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand. OBJECTIVE This study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand. METHODS This study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data. RESULTS The results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice. CONCLUSIONS As of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/20225

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Using Big Data to Estimate Dementia Prevalence in New Zealand: Protocol for an Observational Study

JMIR Research Protocols ◽

10.2196/20225 ◽

2021 ◽

Vol 10 (1) ◽

pp. e20225

Author(s):

Claudia Rivera-Rodriguez ◽

Gary Cheung ◽

Sarah Cullum

Keyword(s):

Risk Factors ◽

New Zealand ◽

Home Care ◽

Informal Care ◽

Dementia Prevalence ◽

Health And Social Care ◽

Informal Care Costs ◽

The Cost ◽

Care Costs ◽

Prevalence Of Dementia

Background Dementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand. Objective This study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand. Methods This study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data. Results The results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice. Conclusions As of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning. International Registered Report Identifier (IRRID) DERR1-10.2196/20225

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COSTS OF INFORMAL CARE FOR PATIENTS IN ADVANCED HOME CARE: A POPULATION-BASED STUDY

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462303000618 ◽

2003 ◽

Vol 19 (4) ◽

pp. 656-663 ◽

Cited By ~ 15

Author(s):

Agneta Andersson ◽

John Carstensen ◽

Lars-Åke Levin ◽

Bengt Göran Emtinger

Keyword(s):

Home Care ◽

Informal Care ◽

Leisure Time ◽

Patient Characteristics ◽

Population Based ◽

Informal Care Costs ◽

The Cost ◽

Formal Caregiver ◽

Advanced Home Care ◽

Care Costs

Objectives: Several studies have sought to analyze the cost-effectiveness of advanced home care and home rehabilitation. However, the costs of informal care are rarely included in economic appraisals of home care. This study estimates the cost of informal care for patients treated in advanced home care and analyses some patient characteristics that influence informal care costs.Methods: During one week in October 1995, data were collected on all 451 patients in advanced home care in the Swedish county of Östergötland. Costs were calculated by using two models: one including leisure time, and one excluding leisure time. Multiple regression analysis was used to analyze factors associated with costs of informal care.Results: Seventy percent of the patients in the study had informal care around the clock during the week investigated. The patients had, on average, five formal care visits per week, each of which lasted for almost half an hour. Thus, the cost of informal care constituted a considerable part of the cost of advanced home care. When the cost of leisure time was included, the cost of informal care was estimated at SEK 5,880 per week per patient, or twice as high as total formal caregiver costs. When leisure time was excluded, the cost of informal care was estimated at SEK 3,410 per week per patient, which is still 1.2 times higher than formal caregiver costs (estimated at SEK 2,810 per week per patient). Informal care costs were higher among patients who were men, who were younger, who had their own housing, and who were diagnosed with cancer.Conclusions: Studies of advanced home care that exclude the cost of informal care substantially underestimate the costs to society, regardless of whether or not the leisure time of the caregiver is included in the calculations.

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Cost of informal care for community-dwelling mild–moderate dementia patients in a developed Southeast Asian country

International Psychogeriatrics ◽

10.1017/s1041610213000707 ◽

2013 ◽

Vol 25 (9) ◽

pp. 1475-1483 ◽

Cited By ~ 10

Author(s):

Mei Sian Chong ◽

Woan Shin Tan ◽

Mark Chan ◽

Wee Shiong Lim ◽

Noorhazlina Ali ◽

...

Keyword(s):

Resource Utilization ◽

Informal Care ◽

Asian Country ◽

Cost Of Care ◽

Community Dwelling ◽

Dementia Patients ◽

Moderate Dementia ◽

Domestic Help ◽

Informal Care Costs ◽

Care Costs

ABSTRACTBackground: Cost of informal care constitutes an important component of total dementia care cost. It also reflects resource utilization by patients and caregivers. We aim to quantify the informal cost of care for mild to moderate dementia patients.Methods: We recruited 165 patient–caregiver dyads with mild to moderate dementia. Informal care burden was assessed using the Resource Utilization in Dementia (RUD)-Lite instrument. A generalized linear model was fitted for association between cost of informal care and cognitive impairment, taking into account patient demographics, disease factors, and use of paid domestic help. Marginal estimates were obtained from the model for the purpose of illustration and discussion.Results: Total hours of informal care by primary caregiver doubled in moderate dementia patients, with 57.9% having paid domestic help to assist in care. Functional factors and use of paid domestic help were significantly associated with informal care costs. Costs were consistently higher for patients without paid domestic help for mild- and moderate dementia.Conclusion: This study demonstrates the informal care costs of caring for mild–moderate dementia patients in Singapore, with the unique cost savings provided by live-in paid domestic help, and potentially may aid policy-makers in allocation of resources and support to caregivers.

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Informal care costs have "strong impact" on economic analyses

PharmacoEconomics & Outcomes News ◽

10.1007/s40274-014-1679-0 ◽

2014 ◽

Vol 715 (1) ◽

pp. 21-21 ◽

Cited By ~ 1

Keyword(s):

Informal Care ◽

Strong Impact ◽

Informal Care Costs ◽

Economic Analyses ◽

Care Costs

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Dementia Prevalence, Comorbidities, and Lifestyle Among Jatinangor Elders

Frontiers in Neurology ◽

10.3389/fneur.2021.643480 ◽

2021 ◽

Vol 12 ◽

Author(s):

Paulus Anam Ong ◽

Febby Rosa Annisafitrie ◽

Novita Purnamasari ◽

Chandra Calista ◽

Noveline Sagita ◽

...

Keyword(s):

Risk Factors ◽

Health Risk ◽

Leisure Activities ◽

Age Groups ◽

Health Risk Factors ◽

Dementia Prevalence ◽

Dementia Risk ◽

Lower Education Level ◽

Related Risk ◽

Prevalence Of Dementia

Introduction: Research on dementia prevalence and the potentially related risk factors from Indonesia is scarce. We sought to identify the prevalence of dementia, health risk factors, and lifestyle in Jatinangor elders.Methods: A total of 686 participants completed questionnaires on lifestyle, health risk factors, and cognitive and functional tests from September 2013 to December 2013. We determined the prevalence of dementia; and the associations between health, leisure activities, dietary pattern, and dementia were analyzed using logistic regression.Results: The prevalence of dementia was 29.15%. The risk factors differed between age groups. Those aged 60–74 years and who have a lower education level, lower occupational attainment, and less active intellectual and recreational activities were associated with higher dementia risk. Those aged > 75 years living in a rural area and who take less fruit were associated with a higher risk of dementia.Conclusions: The prevalence of dementia in Jatinangor is high. The identified modifiable risk factors are a potential target for intervention and valuable for designing public health policies.

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Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States

Palliative Medicine ◽

10.1177/0269216319896745 ◽

2020 ◽

Vol 34 (4) ◽

pp. 513-523 ◽

Cited By ~ 1

Author(s):

Deokhee Yi ◽

Bridget M Johnston ◽

Karen Ryan ◽

Barbara A Daveson ◽

Diane E Meier ◽

...

Keyword(s):

United States ◽

Palliative Care ◽

Home Care ◽

Service Use ◽

The United States ◽

Care Services ◽

Health And Social Care ◽

Total Care ◽

Palliative Care Services ◽

Care Costs

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

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A comparative study on costs of cancer and access to medicines in Europe.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e19051 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e19051-e19051

Author(s):

Nils Erik Wilking ◽

Gunnar Brådvik ◽

Peter Lindgren ◽

Christer Svedman ◽

Bengt Jönsson ◽

...

Keyword(s):

Informal Care ◽

Cancer Care ◽

Health Expenditure ◽

Productivity Loss ◽

Premature Mortality ◽

Access To Medicines ◽

Cancer Drug ◽

Large Country ◽

Informal Care Costs ◽

Care Costs

e19051 Background: Cancer care is evolving rapidly, and costs and value of new treatments are often causing headlines without being discussed in a larger context. This study estimates the cost of cancer and access to medicines in Europe in 2018 and extends a previous analysis for 1995–2014. Methods: Cancer-specific health expenditure for 31 countries (EU-27 plus Iceland, Norway, Switzerland, and the UK) were derived from national estimates. Data on cancer drug sales were obtained from IQVIA. The productivity loss from premature mortality was estimated from data from Eurostat and the WHO. Estimates of the productivity loss from morbidity and informal care costs were based on previous studies. Results: The total cost of cancer was €199 billion in 2018. Total costs ranged from €160 per capita in Romania to €578 in Switzerland (after adjustment for price differentials). Health expenditure on cancer care was €103 billion, of which €32 billion was spent on cancer drugs. Informal care costs were €26 billion. The total productivity loss was €70 billion, composed of €50 billion from premature mortality and €20 billion from morbidity. Between 1995 and 2018, cancer incidence increased by 50 percent from 2.1 million to 3.1 million cases in Europe. Cancer mortality increased only by 20 percent. Health spending on cancer care doubled from €52 billion to €103 billion (in 2018 prices and exchange rates), whereas the share of cancer care on the total health expenditure remained stable at around 4 to 7 percent. A shift from treatment in inpatient care to ambulatory care has probably saved costs. Expenditure on cancer medicines more than tripled from €10 billion to €32 billion between 2005 and 2018 (excluding confidential rebates). Productivity loss from premature mortality decreased over time, linked to mortality reductions in working-age patients. Conclusions: There are large country differences in spending on cancer care and outcomes in Europe. Access to new cancer medicines is low or very low in certain parts of Europe. Inequalities are mainly related to countries’ economic strength and not to the disease burden of cancer.

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