SPOR EA - Cost Accounting for Long-term Care Beds - Findings - Time Cost

2021 11 13 - Mom moved home on November 1, 2021 and was immediately laid low with pneumonia, an exacerbation of her COPD. She was very weak. There were times when I sat with her as she struggled to breath and wondered, "What am I supposed to do now?" Mom was adamant that she wanted to let nature take its course. We were all supportive of her wishes. However, what did that actually look like in practice? None of us had any experience with this. I called my sister and we talked about how to handle the situation.

INTRODUCTION

This article is the seventh of ten short pieces reporting the work presented on May 13, 2025. On that day we held a knowledge mobilization event to share out what we had learned from a Strategic Patient Oriented Research (SPOR) Evidence Alliance (EA) funded study to find out what research has been published on cost accounting for operating long-term care beds in institutional and family-based settings.

In the previous article we reported material costs as reported in the Scoping Review, and then actual material costs collected over 33 months in a family caregiving home.

In this article we report time costs reported in the Scoping Review, and the actual time costs incurred operating a long-term care bed for a frail elder with complex needs in a family caregiving home (case study of one).

Time cost includes all the incidental time spent communicating to make sure Mom's needs are met, everyone understands imminent tasks and risk mitigation strategies, and smooth transitions from one caregiving scenario to the next. Everyday there were careworkers visiting to take care of Mom's bathing needs. There was orchestration with Mom and family caregivers to make sure we had a successful visit.

Scoping Review findings for time cost were extracted from a collection of 37 studies selected for full text data extraction and review, synthesis, and reporting.

Family Caregiving time records were collected using Google calendar and tabulated using Airtable database application. Time records were collected over a 33 month duration, breaking down time contributed by unpaid family, paid (below market value) family, paid (market value) external supplier, and Home Support (MSP paid) respite. The final weeks of Mom's life at home we had Emergency Long-term Care on site 24/7 (Sep 24 to Oct 4, 2024).

Group discussion about time cost

Time cost includes continuous monitoring of multiple dimensions of the caregiving work. Mom's mental and emotional state, her strength, and complex disease / aging processes. Environmental factors such as late summer air quality when wildfire smoke was drifting into the lower mainland, impacting Mom's COPD condition. Housekeeping tasks ongoing.

1. SCOPING REVIEW

No specific research from our collection studied the cost of time to operate a long-term care bed, either in an institutional or a home-based setting.

We found one study from a joint project from the University of Alberta and the University of Manitoba. This team examined results from Statistics Canada's 2018 General Social Survey. This survey was conducted with respondents aged 15+ living in the ten Canadian provinces. They estimated the convective monetary value of unpaid care work using the generalist replacement cost method. Annual hours of unpaid care work in seven different care tasks were multiple by the national median hourly cost of hiring home support workers at $17 per hour. This rate was derived from the jobbank.gc.ca/wagereport/occupation/20667.

Eales, et al reported there were 7.8 million family caregivers providing 5.7 billion hours of unpaid care in 2018. They estimated the value of this work to be $97.1 billion, the equivalent of 2.8 million FTE positions.

According to their analysis, family caregivers' contributions to Canadian society are significant, contributing 4.2% of the Gross Domestic Product, 32.2% of national expenditures on health care and more than 3 times the national expenditures on home, community and long-term care. The percentage of Canadians 15 years and older providing unpaid family caregiver time is over 25% across all ten provinces.

- Eales, J., Fast, J. E., Duncan, K., & Keating, N. C. (2022, February 20). Family Caregiving Worth 97 billion.pdf. University of Alberta, Department of Human Ecology.

Time cost includes the time spent on dietary and nutrition concerns. Mom had a good appetite, but sometimes she had difficulty with heartburn, constipation and/or diarrhea. Different medications would have compounding impacts on her digestion, as well.

Time cost also includes caregiving overnight. Although I would sleep while Mom slept, it was a light sleep, ever sensitive to sounds of movement from her room. If I heard her moving I would get up to check on her and see if anything was needed.

One other study was presented for findings related to time cost. This was from Sweden, a team led by Jenny Alwin, studying the societal costs of informal care for community-dwelling frail elders. They used a questionnaire completed by primary informal caregivers of 408 frail elderly patients. They received responses from 176 informal caregivers reported providing an average of 245 hours over three months. The total annual societal cost of informal care of community dwelling frail elders aged 75 years and older was estimated to be 1,150 million EU. Their conclusion was that the time provided by information caregivers was extensive and represented a great economic value. their conclusion was that supporting informal caregivers in society should be a priority.

With regards to methodologies for calculating rate per hour for unpaid family caregiving, the Swedish study identified two scenarios:

1. Informal care was valued by a preference-based value taken from a study in the Netherlands;

2. Informal care was valued by replacement value, one hour of informal care was given the value of one hour of the cost of formal home-help services.

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

Time cost includes all appointments and interactions with MSP personnel, including Mom's family doctor, the palliative care nurse, the long-term care case manager, the Home Support scheduler, the continuous flow of Home Support caregivers, pharmacists, and local health testing facilities for dropping off specimens or attending for diagnostics.

Time cost includes provisioning Mom's suite with groceries, personal care items from the drugstore, any clothing or footwear, all shopping / ordering errands. Purchasing needs to be coordinated to maximize efficiency and take advantage of family members who can run an errand to the store but don't have time to come and stay overnight.

2. FAMILY CAREGIVING

Time costs were collected and reported from a 33 month caregiving time (Jan 2022 through Sep 2024). Time records were kept on a Google calendar, documenting time that the primary caregiver was NOT looking after Mom. All other time was assumed to be covered by the primary caregiver, as Mom required caregiving 24/7.

Mom moved home Nov 1, 2021. The time data reported for this case study starts in January, 2022. The months of November and December, 2021 there was no Home Support, the service had not been put in place. The family provided unpaid caregiving 100% of the time.

Mom's needs changed over time which meant we were continuously removing and adding furnishings to meet her needs. Time cost includes assessing Mom's living situation, conducting risk assessments, and developing risk mitigation strategies.

The family caregiving team was comprised of Mom's six adult children, her youngest daughter took on the role and responsibility of primary caregiver. One adult grandson provided respite care, paid, but below market rate. With each passing year, the amount of time provided by her grandson increased, but his compensation did not, so, effectively, his time increased and his compensaton decreased as time went on.

The work of the primary caregiver covered a wide range of roles and responsibilities, from high function administration, management, leadership and planning; through coordination, liaison, and risk management; to cleaning out the commode three or four times a day, helping Mom get into and out of bed, and making sure Mom always had a glass of fresh water within reach.

In 2022 Home Support provided respite at a rate of 2 hours a week (paid by MSP). The primary caregiver still had paid work, so we hired external Home Service to buy time for paid work away from Mom. In November that year we came down with Covid. Both Home Support and Home Service cancelled visits. At the same time, primary caregiver's paid work ended. As 2022 drew to a close we decided to see if it would be more manageable for the primary caregiver to stay home with Mom. The 2 hours a week from Home Support only reduced the overall caregiving work by less than 1%, the amount of time and energy it took to accomodate the service was not enough to make a substantial improvement to the overall workload of caring for Mom.

Through 2023 the family managed Mom's caregiving, with the addition of Home Support for showers and sponge baths on a daily basis.

Halfway through 2024 the primary caregiver was burning out and we started to look for additional supports, specifically, if Mom could go and stay at the Family Respite Centre for an visit so the primary caregiver could make trips to see her grandchildren. Mom's health declined over the summer and by mid-September we decided we could no longer care for her and asked for her to be placed in a hospice or a long-term care facility. There were no beds available, so Emergency Long-Term care was put in place at home.

Time cost includes discussions to figure out how to respond to emerging, changing conditions. Mom's health went through many changes during our caregiving time. She started with pneumonia and dementia diagnosis in November, 2021. At that time we thought she had six months to live. She was put on the palliative care registry. After that her palliative care registry got updated every six months. We never quite knew how much time she had. On her last day, she was still not deemed ready for hospice care. We thought she was going to bounce back again.

Mom passed away at home with her daughter, daughter-in-law, grand-daughter, and great-granddaughter in attendance. She let nature take its course.

The primary caregiver provided the bulk of caregiving time, averaging 525 hours a month over 33 months. Mom's adult children contributions varied, depending on work and leisure schedules.

Mom's grandson provided 405 hours of respite in 2022, 871.25 hours in 2023, and 675.5 hours of respite in 2024.

The amount of time provided by external paid service was 425 hours in 2022. The amount of time provided by Home Support (MSP coverage) was 73 hours in 2022 and 230 hours in 2024, starting with 4 hour shifts of respite care in the month of August. Emergency long-term care started on Sep 24 and ended on Oct 4, when Mom passed away.

Mom's family, including the primary caregiver, contributed 7,858 hours of caregiving in 2022, 7,889.75 hours in 2023, and 5,726.50 in 2024.

The total number of hours of care required were 8,761 in 2022 and 2023, and 6,672 in 2024.

The family provided 21,474.25 hours of unpaid care out of a total of 24,194 hours. The family also paid the grandson's 1,951.75 hours of caregiving. The family also paid for 425 hours of external Home Service, at a cost of $14,875.

For the purposes of this case study, we used a $5/hr rate to value the unpaid time contributed by the family. Our thinking was that we could not imagine funding for replacement cost for a single frail elder at home who needs 24/7 caregiving. At the same time, there was a value for our time that would make it so that we could have sustained our caregiving commitment without increasing our own socio-economic vulnerability. This was a rate that would have made the difference between operating our home-based caregiving bed at a deficit or at a sustainable rate. If we had received compensation at the rate of $5 an hour, it would have made a significant difference in sustaining our household through our caregiving time.

The cost of time for the family operating a long-term care bed for a frail elder with complex needs was as follows:

Unpaid family caregiving - 21,474.25 hours at $5/hr = $107371.25

Paid family caregiving - internal = $19,694.94

Paid Home Service - external = $14,875

Total Time Cost to Family = $141,941.19

Estimate cost per month over 33 months = $4,301.25

Estimate cost per day (30 day month) = $143.37

This is the amount that would have made a significant impact on burnout, financial distress, and debt accumulation over the duration of caregiving.

Time cost can be considered in terms of the loss of time to pursue other activities of daily living - these have been divided into the loss of productive time (wage earning) and the loss of leisure time (time for rest and relaxation).

3. GROUP DISCUSSION

Scoping Review - Time Cost

How was time cost calculated in the Swedish study? What rate did they use? In the Swedish study cost was based on the human capital approach, informal care was valued by its opportunity cost. Opportunity cost was valued in terms of leisure time loss or productive time loss. Leisure time was calculated at 35% of the gross wage rate, productive time was calculated on data on average monthly salary in Sweden, plus social fees.

The Swedish study provided a way to think about how to value time that is used for family caregiving.

Family Caregiving - Time Cost

Did the time you spent on administration, scheduling, coordination, etc, was that included in the time cost? Yes.

How does the $5 an hour rate you used compare to the rate reported from the Seniors Advocate Centre of the operating cost for a long-term care bed ($255/day)? We don't know, we don't know what that number represents in terms of material and time cost breakdown.

CONCLUSIONS

In this article we have reported findings on Time cost from the Scoping Review and from a home-based long-term care operation for a frail elder with complex needs.

Time cost includes unpaid family caregiving time by all family members, not just the primary caregiver. My sister spent overnight with Mom the night before she died. She passed at 4:05 pm the following afternoon. My sister and I sang songs with Mom that morning, not knowing they would be our last time the three of us would sing together.

There was no evidence-based data in the research publications reporting the cost of operating a long-term care bed in an institutional or a home-based setting. The analysis of family caregiving data from Statistics Canada (2018) indicates a significant amount of time, and a significant value of that time, is being expended every year by families. The amount of time and the value of that time indicate that the healthcare system is depending on family caregiving resources to bolster the existing healthcare system. If family caregivers were to stop providing the time and care at current levels the healthcare system would collapse. These findings were supported by a study in Sweden estimating the quantity of time and the value of that time to the Swedish healthcare system.

The family in our case study essentially provided caregiving for almost 100% of the time to look after their Mom. Time provided by the healthcare system for respite totalled 343 hours out of 24,194 hours required. This amounts to 1.42% of the time compared to the family contribution.

Time cost for family caregivers has to account for the time spent learning how to be a caregiver, how to manage and support the needs of a frail elder with complex needs. For many family caregivers, this is our first experience providing end of life geriatric care to our parent. We don't know what we don't know. We do know that the impact of any error in judgement that we make may be the difference between life and death. We may never have had this level of responsibility combined with this lack of practical skill, experience and knowledge.

Time is a fixed commodity. There are 24 hours in a day. A frail elder with complex needs that requires 24 hour care is going to draw down time resources from either the healthcare system or family caregivers. If the time is being contributed from the family, it is going to draw down from either leisure or productive time. If it is drawing from leisure time, it means the family is working longer hours and going into deficit for rest and relaxation. If it is drawing from productive time, it means the family is working but bringing in less cashflow to support the household, it means the family is going into debt to meet the financial requirements for the household.

Assuming any family preparing to look after a care recipient in their home is already working to maintain work/life balance and financial well being, the addition of family caregiving time is going to need an inflow of external supports to manage the draw down on time.

The fact that there is no research published that has studied the cost of long-term care in either institutional or home-based settings is very concerning. At present, the cost of time for long-term care, is invisible. It has not been measured.

How will we manage when fully one quarter of our population is entering the last years and decades of their lives? How are we going to ensure we have supports in place to meet the needs of declining ability to independently manage our activities of daily living?

Time cost needs to account for the time a family, and a primary caregiver, need to recover from the intensity and loss of providing end of life care to a frail elder with complex needs. There needs to be time, similar to maternity leave, where a family caregiving household can recover, re-organize and refurbish their home in the aftermath of running a home-based caregiving operation.

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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