SPOR EA - Cost Accounting for Long-term Care Beds - Methodology - Data Sources

2022 03 22 - Mom and Tom wrote a song, 'Around and Around'

INTRODUCTION

This article is the fifth of ten short pieces reporting the work done to investigate what research has been completed to show evidence-based cost accounting for operating long-term care beds in institutional and home-based settings. The findings from this work were reported out in a knowledge mobilization event held on May 13 at Vancouver General Hospital. This was a hybrid event, with in-person and online attendance through a Zoom connection.

The findings from the Scoping Review were presented by two members of the research team,

Nora Fripp, Research Scientist, Centre for Clinical Epidemiology and Evaluation, UBC

Smita Roy, Master of Science (candidate), School of Population and Public Health, UBC

The findings from Family Caregiving were presented by Jenny Arntzen, Patient-Parnter Co-Lead and Primary Caregiver for a frail elder with complex needs.

In this article we provide detail into the data sources that we collected during this study. The Scoping Review focused on data sources from peer reviewed health science research publications. Family Caregiving focused on data sources developed through a single autoethnographic case study adapting practice standards and frameworks from the Project Management Institute. We include questions from the group discussion that followed each presentation.

1. SCOPING REVIEW

For the purposes of this scoping review, Long Term Care was defined as a range of services and supports provided to individuals who have difficulty managing activities of daily living. Institutional long-term care was defined as live-in facilities where care is provided 24/7. Medical and personal care are provided. Home-based long-term care refers to care provided in a personal residential setting - it can be the residence of the care recipient or the care recipient may have moved in with family. This care setting may include 24/7 coverage, but not necessarily, depending on the needs of the care recipient. Medical care is provided through a combination of community-based infrastructure (doctor's office, clinics, labs). Personal care is provided through a combination of formal Home Support (in BC) orders and informal (unpaid or privately paid) support provided by the family.

The Office of Seniors Advocates of BC provided statistics from 2023 reporting the state of institutional long-term care accessibility:

The average age of patients in residential long-term care (institutional settings) was 83 years old.
The wait time to access a bed in a long-term care facility averaged 101 days but varied across regions:

Shortest wait time was 65 days (Vancouver Coastal Health)
Longest wait time was 278 days (Northern Health)

Average length of stay was 827 days (2.3 years)
Estimated cost to operate a long-term care bed $255 per day

Average cost for average length of stay 827 days x $255 per day = $210,885 per person

Report from Statistics Canada survey (2018) reported there were 6.8 million caregivers in Canada who provided 5.7 billion hours of unpaid care per year. Replacement value for this annual caregiving was estimated to be worth $97 billion.

Data sources for the Scoping Review were limited to publications between 2014 and 2024. Thirty seven papers were selected from an initial pool of 3700 records identified from Medline, Embase and CINAHI.

The Scoping Review was carried out in four steps:

Search Strategy and Execution
Abstract Review and Full Text Data Extraction and Review
Synthesis
Report Write-Up and Briefing Notes

These thirty-seven papers were selected for full review, synthesis and report write-up.

This is the bibliography of the papers selected for full review and synthesis:

Achelrod, D., Schreyögg, J., & Stargardt, T. (2017). Health-economic evaluation of home telemonitoring for COPD in Germany: Evidence from a large population-based cohort. The European Journal of Health Economics, 18(7), 869–882. https://doi.org/10.1007/s10198-016-0834-x

Alwin, J., Karlson, B. W., Husberg, M., Carlsson, P., & Ekerstad, N. (2021). Societal costs of informal care of community-dwelling frail elderly people. Scandinavian Journal of Public Health, 49(4), 433–440. https://doi.org/10.1177/1403494819844354

Ballard, C., Corbett, A., Orrell, M., Williams, G., Moniz-Cook, E., Romeo, R., Woods, B., Garrod, L., Testad, I., Woodward-Carlton, B., Wenborn, J., Knapp, M., & Fossey, J. (2018). Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial. PLOS Medicine, 15(2), e1002500. https://doi.org/10.1371/journal.pmed.1002500

Bhattacharya, K., Bentley, J. P., Ramachandran, S., Chang, Y., Banahan, B. F., Shah, R., Bhakta, N., & Yang, Y. (2021). Phase-Specific and Lifetime Costs of Multiple Myeloma Among Older Adults in the US. JAMA Network Open, 4(7), e2116357. https://doi.org/10.1001/jamanetworkopen.2021.16357

Blackburn, J., Locher, J. L., & Kilgore, M. L. (2016). Comparison of Long-term Care in Nursing Homes Versus Home Health: Costs and Outcomes in Alabama. The Gerontologist, 56(2), 215–221. https://doi.org/10.1093/geront/gnu021

Bray, J., Brooker, D., Latham, I., Wray, F., & Baines, D. (2020). Costing resource use of the Namaste Care Intervention UK: A novel framework for costing dementia care interventions in care homes. International Psychogeriatrics, 32(12), 1429–1438. https://doi.org/10.1017/S1041610218002314

Brian Cassel, J., Kerr, K. M., McClish, D. K., Skoro, N., Johnson, S., Wanke, C., & Hoefer, D. (2016). Effect of a Home‐Based Palliative Care Program on Healthcare Use and Costs. Journal of the American Geriatrics Society, 64(11), 2288–2295. https://doi.org/10.1111/jgs.14354

Cai, S., Intrator, O., Chan, C., Buxbaum, L., Haggerty, M. A., Phibbs, C. S., Schwab, E., & Kinosian, B. (2021). Association of Costs and Days at Home With Transfer Hospital in Home. JAMA Network Open, 4(6), e2114920. https://doi.org/10.1001/jamanetworkopen.2021.14920

Caravau, H., & Martín, I. (2015). Direct costs of dementia in nursing homes. Frontiers in Aging Neuroscience, 7. https://doi.org/10.3389/fnagi.2015.00146

Costa, N., Wübker, A., De Mauléon, A., Zwakhalen, S. M. G., Challis, D., Leino-Kilpi, H., Hallberg, I. R., Stephan, A., Zabalegui, A., Saks, K., Molinier, L., Wimo, A., Vellas, B., Sauerland, D., Binot, I., Soto, M. E., Meyer, G., Stephan, A., Renom Guiteras, A., … Vellas, B. (2018). Costs of Care of Agitation Associated With Dementia in 8 European Countries: Results From the RightTimePlaceCare Study. Journal of the American Medical Directors Association, 19(1), 95.e1-95.e10. https://doi.org/10.1016/j.jamda.2017.10.013

Dodel, R., Belger, M., Reed, C., Wimo, A., Jones, R. W., Happich, M., Argimon, J. M., Bruno, G., Vellas, B., & Haro, J. M. (2015). Determinants of societal costs in Alzheimer’s disease: GERAS study baseline results. Alzheimer’s & Dementia, 11(8), 933–945. https://doi.org/10.1016/j.jalz.2015.02.005

Dyer, S. M., Liu, E., Gnanamanickam, E. S., Milte, R., Easton, T., Harrison, S. L., Bradley, C. E., Ratcliffe, J., & Crotty, M. (2018). Clustered domestic residential aged care in Australia: Fewer hospitalisations and better quality of life. Medical Journal of Australia, 208(10), 433–438. https://doi.org/10.5694/mja17.00861

Ennis, L., Kinley, J., Hockley, J., & McCrone, P. (2015). The cost of providing end of life care for nursing care home residents: A retrospective cohort study. Health Services Management Research, 28(1–2), 16–23. https://doi.org/10.1177/0951484815607541

Farré, M., Haro, J. M., Kostov, B., Alvira, C., Risco, E., Miguel, S., Cabrera, E., & Zabalegui, A. (2016). Direct and indirect costs and resource use in dementia care: A cross-sectional study in patients living at home. International Journal of Nursing Studies, 55, 39–49. https://doi.org/10.1016/j.ijnurstu.2015.10.012

Guliani, H., Hadjistavropoulos, T., Jin, S., & Lix, L. M. (2021). Pain-related health care costs for long-term care residents. BMC Geriatrics, 21(1), 552. https://doi.org/10.1186/s12877-021-02424-2

Halling, C. M. B., Wolf, R. T., Sjøgren, P., Von Der Maase, H., Timm, H., Johansen, C., & Kjellberg, J. (2020). Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: The DOMUS trial. BMC Palliative Care, 19(1), 142. https://doi.org/10.1186/s12904-020-00645-7

Harrington, C., Mollot, R., Braun, R. T., & Williams, D. (2024). United States’ Nursing Home Finances: Spending, Profitability, and Capital Structure. International Journal of Social Determinants of Health and Health Services, 54(2), 131–142. https://doi.org/10.1177/27551938231221509

Higginson, I. J., Yi, D., Johnston, B. M., Ryan, K., McQuillan, R., Selman, L., Pantilat, S. Z., Daveson, B. A., Morrison, R. S., & Normand, C. (2020). Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: The international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study). BMC Medicine, 18(1), 344. https://doi.org/10.1186/s12916-020-01768-7

Hugo, C., Isenring, E., Sinclair, D., & Agarwal, E. (2018). What does it cost to feed aged care residents in Australia? Nutrition & Dietetics, 75(1), 6–10. https://doi.org/10.1111/1747-0080.12368

Isenberg, S. R., Tanuseputro, P., Spruin, S., Seow, H., Goldman, R., Thavorn, K., & Hsu, A. T. (2020). Cost-effectiveness of Investment in End-of-Life Home Care to Enable Death in Community Settings. Medical Care, 58(8), 665–673. https://doi.org/10.1097/MLR.0000000000001320

Kalluri, M., Lu-Song, J., Younus, S., Nabipoor, M., Richman-Eisenstat, J., Ohinmaa, A., & Bakal, J. A. (2020). Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic. Annals of the American Thoracic Society, 17(6), 706–713. https://doi.org/10.1513/AnnalsATS.201909-707OC

Kok, L., Berden, C., & Sadiraj, K. (2015). Costs and benefits of home care for the elderly versus residential care: A comparison using propensity scores. The European Journal of Health Economics, 16(2), 119–131. https://doi.org/10.1007/s10198-013-0557-1

König, H.-H., Leicht, H., Brettschneider, C., Bachmann, C., Bickel, H., Fuchs, A., Jessen, F., Köhler, M., Luppa, M., Mösch, E., Pentzek, M., Werle, J., Weyerer, S., Wiese, B., Scherer, M., Maier, W., & Riedel-Heller, S. G. (2014). The Costs of Dementia From the Societal Perspective: Is Care Provided in the Community Really Cheaper than Nursing Home Care? Journal of the American Medical Directors Association, 15(2), 117–126. https://doi.org/10.1016/j.jamda.2013.10.003

Leniz, J., Evans, C. J., Yi, D., Bone, A. E., Higginson, I. J., & Sleeman, K. E. (2022). Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis. Journal of the American Medical Directors Association, 23(12), 2015-2022.e5. https://doi.org/10.1016/j.jamda.2022.06.007

Maetens, A., Beernaert, K., De Schreye, R., Faes, K., Annemans, L., Pardon, K., Deliens, L., & Cohen, J. (2019). Impact of palliative home care support on the quality and costs of care at the end of life: A population-level matched cohort study. BMJ Open, 9(1), e025180. https://doi.org/10.1136/bmjopen-2018-025180

Marek, K. D., Stetzer, F., Adams, S. J., Bub, L. D., Schlidt, A., & Colorafi, K. J. (2014). Cost Analysis of a Home‐Based Nurse Care Coordination Program. Journal of the American Geriatrics Society, 62(12), 2369–2376. https://doi.org/10.1111/jgs.13162

Markle-Reid, M., Valaitis, R., Bartholomew, A., Fisher, K., Fleck, R., Ploeg, J., & Salerno, J. (2020). An integrated hospital-to-home transitional care intervention for older adults with stroke and multimorbidity: A feasibility study. Journal of Comorbidity, 10, 2235042X1990045. https://doi.org/10.1177/2235042X19900451

Meads, D. M., Martin, A., Griffiths, A., Kelley, R., Creese, B., Robinson, L., McDermid, J., Walwyn, R., Ballard, C., & Surr, C. A. (2020). Cost-Effectiveness of Dementia Care Mapping in Care-Home Settings: Evaluation of a Randomised Controlled Trial. Applied Health Economics and Health Policy, 18(2), 237–247. https://doi.org/10.1007/s40258-019-00531-1

Milligan, K., & Schirle, T. (2023). The Economics of Long-Term Care in Canada (w31875; p. w31875). National Bureau of Economic Research. https://doi.org/10.3386/w31875

Olazarán, J., Agüera-Ortiz, L., Argimón, J. M., Reed, C., Ciudad, A., Andrade, P., & Dilla, T. (2017). Costs and quality of life in community-dwelling patients with Alzheimer’s disease in Spain: Results from the GERAS II observational study. International Psychogeriatrics, 29(12), 2081–2093. https://doi.org/10.1017/S1041610217001211

O’Shea, E., & Monaghan, C. (2017). An economic analysis of a community-based model for dementia care in Ireland: A balance of care approach. International Psychogeriatrics, 29(7), 1175–1184. https://doi.org/10.1017/S1041610217000400

Panca, M., Livingston, G., Barber, J., Cooper, C., La Frenais, F., Marston, L., Cousins, S., & Hunter, R. M. (2019). Healthcare resource utilisation and costs of agitation in people with dementia living in care homes in England—The Managing Agitation and Raising QUality of LifE in Dementia (MARQUE) study. PLOS ONE, 14(2), e0211953. https://doi.org/10.1371/journal.pone.0211953

Sahlen, K.-G., Boman, K., & Brännström, M. (2016). A cost-effectiveness study of person-centered integrated heart failure and palliative home care: Based on a randomized controlled trial. Palliative Medicine, 30(3), 296–302. https://doi.org/10.1177/0269216315618544

Sandberg, M., Jakobsson, U., Midlöv, P., & Kristensson, J. (2015). Cost-utility analysis of case management for frail older people: Effects of a randomised controlled trial. Health Economics Review, 5(1), 12. https://doi.org/10.1186/s13561-015-0051-9

Yamauchi, Y. (2015). Decomposing Cost Efficiency in Regional Long-term Care Provision in Japan. Global Journal of Health Science, 8(3), 89. https://doi.org/10.5539/gjhs.v8n3p89

Yi, D., Johnston, B. M., Ryan, K., Daveson, B. A., Meier, D. E., Smith, M., McQuillan, R., Selman, L., Pantilat, S. Z., Normand, C., Morrison, R. S., & Higginson, I. J. (2020). 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, 34(4), 513–523. https://doi.org/10.1177/0269216319896745

Yu, M., Guerriere, D. N., & Coyte, P. C. (2015). Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada. Health & Social Care in the Community, 23(6), 605–618. https://doi.org/10.1111/hsc.12170

2. FAMILY CAREGIVING

Data sources for our case study of one family caregiving operation was derived from records collected caring for a fragile elder with complex needs who required 24/7 caregiving support.

The data source for our home-based caregiving operation was a family home in East Vancouver, BC. The caregiving suite was a two bedroom basement suite built in 2012.

Data for operating a home-based family caregiving bed was collected and processed using a scheduling application (OmniPlan), Google Calendar, and .csv downloads from banking and credit card institutions.

Time records and financial data were collected over a 33 month period and processed using Airtable database platform. Summary reports and graphs were exported to Google Sheets for processing and graphic outputs.

Detailed breakdown of financial cost distribution between Mom and the rest of the household.

Mom's suite occupied the basement of our house in East Vancouver. She had her own bedroom and a spare bedroom for her sleep-over care.

Costs were measured in time and financial outputs. Time records were collected through Google Calendar. For example, in the year 2023, the family received no respite care from Home Support. The family provided 24/7 coverage, which totalled 8,761 hours for the year. Mom could not be left alone overnight, so there had to be someone sleeping in her guest room every night.

Time data was collected and reported with a breakdown by caregiving role / family position. Mom had six children. There were five of us living within the lower mainland. Some of her children took on more responsibility than others. During the year 2023, we managed to look after Mom in-family, with one grandchild providing paid respite (below market rate).

For the year 2023, Mom was cared for at home by family at no cost to the healthcare system (for her personal care and housing). These are the hours worked by the family to care for Mom. The family compensated one family member who was able to offer respite time below market labour cost.

Financial costs were calculated to reflect costs specifically incurred as a result of Mom occupying our two-bedroom basement suite.

The proposed cost accounting framework from the Scoping Review was used to report home-based caregiving cost for the purposes of this report.

Time and material data were coded according to the proposed Cost Accounting Framework.

Time cost was coded under societal costs because every hour of caregiving duty is a direct reduction in time available for productive (ie. wage earning) and leisure (including mental health, physical therapy, etc.) time.

Financial data was identified and coded as if we were operating a rooming or boarding house and Mom's living space was eligible for tax deduction. I used generally accepted accounting methods for calculating Mom's share of costs - her medical costs were covered by MSP; anything relating to her personal care was deducted at 100%; medical equipment and consumables were deducted at 100%; housing infrastructure - based on square footage, was calculated at 37% for housing costs, 100% as the suite has its own Hydro account, and 10% for shared infrastructure; entertainment was calculated at 37%.

Quantifying time data in terms of financial equivalence is not a simple valuation. For the purposes of this report, we valued family caregiving time in terms of sustaining our household caregiving operation, rather than charging market rate for hours worked. This topic is discussed further in 7/10 Time Cost and 8/10 Comparative Cost.

3. GROUP DISCUSSION

Questions from the attendees after the Scoping Review:

Clarifying costs for informal (home-based) care - do they include costs for Medical Doctor, Registered Nurse, Healthcare Aid? No - these numbers only report the cost of time estimated to have been spent by family to provide personal care, medical assistance and emotional support.
Is there any data comparing the amount of care provided by family to those in institutional long-term care? There was one study that estimated 40 hours a month contributed by family to support a family member in an institutional setting.
What are the differences between in-home, long-term care and home-care services? In-home long-term care refers to care that someone receives in-home that would otherwise be provided in an institution.
What was the rate they were using to come up with a dollar figure to quantify the cost of time - how did they determine an hourly rate to assign cost to time? It depends, it varies across studies, for the Canadian study, they used a replacement value, what it would cost to replace someone doing that task.

Questions from the attendees after the Family Caregiving Report:

In terms of time records, did you include administration time coordinating schedules? Yes, that time was included in the hours I was on caregiving duty looking after Mom. It was impossible to parse the different roles I was playing from one moment to the next, which included:

Administration
Care Coordination
Resource Assignment
Schedule Management
Budget Management
Risk Management
Medical Liaison
Nurse
Dietician, Nutritionist
Procurement
Operations Manager
Housekeeping
Food Service
Groundskeeping
Facilities Management
Stakeholder Engagement
Communication Management
Personal Care
Social Coordinator

How did you quantify time data to an hourly rate? There was no baseline or benchmark amount we found in the research to use so we developed our own rationale for pricing family time.
There is so much that is not captured in the title of caregiving, this presentation has helped us to understand what this work entails.
Was there consideration for the usual cost of living as deduction from your cost accounting? Yes. We apportioned regular family cost of living outside the costs reported in this presentation.
We need a societal conversation about what should be reasonably expected to be contributed from families (to care for their elderly family members) and what can we reasonably expect our social and healthcare systems to provide?

CONCLUSIONS

The Scoping Review yielded 37 studies published between 2014 and 2024 from the PRISMA search strategy and execution. There were no studies reporting cost accounting in long term care, cost accounting in home-based family caregiving or comparing the cost of operating caregiving beds in long-term care and home-based family settings.

Statistics reporting the state of institutional long-term care accessibility were collected from the Office of BC Seniors Advocates of BC. In 2018 Statistics Canada reported there were 6.8 million family caregivers in Canada, providing 5.7 billion hours of unpaid caregiving time per year. Replacement value for this time was estimated to be worth $97 billion per year.

The Family Caregiving case study presented data sources from a home-based caregiving operation for a frail elder with complex needs. This particular home-based caregiving operation provided 24/7 support. The data was collected over a 33 month caregiving period, from when Mom moved home to her finally passing away at home in her bed. Time records were collected using a shared Google calendar. Financial records were collected from credit card and bank statements.

Time records showed unpaid family time, minimally compensated internal family time, market compensation to external home care provider, and respite care provided by Home Support.

Financial costs were calculated using a formula to assign costs specific to the caregiving operation, separate from the household normal expectations for cost of living.

Questions from the attendees were collected after the Scoping Review. These questions focused on clarifying cost represented in the studies, studies looking at family caregiving time contributed in institutional settings, definitions of services, and how to quantify the rate for the cost of time spent caregiving.

Questions from attendees were collected after the Family Caregiving presentation. These questions focused on how caregiving roles and responsibilities are represented in the time records, how was family caregiving time quantified for the presentation, how the cost of living for the family was separated from the cost of operating the caregiving bed, and how do we, as a society, discuss expectations for caregiving contributions on a personal level and on a societal level.

In the next article, Findings - Material Cost - 6/10 we will provide a detailed report on what we learned about material costs reported in the research literature and what we learned from a family caregiving setting.

=========================================================================

Strategic Patient Oriented Research (SPOR) Evidence Alliance

COST ACCOUNTING FOR LONG-TERM CARE

Table of Contents

Introductory - Follow up / Thank You - 0/10

Introduction - Context - 1/10

Introduction - Project Development - 2/10

Problem to be Addressed - 3/10

Methodology - Approach - 4/10

Methodology - Data Sources - 5/10

Findings - Material Cost - 6/10

Findings - Time Cost - 7/10