Abstract
Background:
In older adults, serious illness comprises three manifestations: dementia, activity of daily living (ADL) impairment, and other advanced medical conditions (AMC; e.g. end-stage renal disease). Little is known about how dementia and other manifestations of serious illness co-occur. We aim to describe the prevalence of persons with dementia (PWD) who are living with additional manifestations of serious illness, and the implications on health care utilization, Medicare costs, caregiving hours and out-of-pocket expenses.
Methods:
In this cross-sectional study, we use data from the 2016 Health and Retirement Study (HRS) linked to Medicare fee-for-service claims. We limited inclusion to adults >65 years. Dementia was determined using validated methodology that incorporates functional and cognitive test scores from HRS. We classified PWD as having dementia alone, dementia and an AMC (irrespective of ADL impairment) or dementia and ADL impairment (without an AMC). Health care utilization and Medicare costs were measured in claims, caregiving hours and out-of-pocket expenses were self-reported.
Results:
Most PWD (67%) met criteria for another manifestation of serious illness (24% advanced medical condition, 44% ADL impairment). PWD and an AMC had the highest proportion of hospital use and the highest median total Medicare costs ($17,900 vs $8,962 dementia + ADL impairment vs $4,376 dementia alone). Mean total hours of caregiving per month were similar for PWD and an AMC and PWD and ADL impairment (142.9 and 141.9 hours, respectively), while mean hours were much lower for PWD alone (47.7 hours). Median out-of-pocket costs were highest for PWD and ADL impairment ($13,261) followed by PWD and an AMC ($10,837) and PWD alone ($7,017).
Conclusions:
PWD commonly face another manifestation of serious illness. Dementia and ADL impairment was associated with the highest costs for PWD and families while dementia and an AMC was associated with the highest costs for Medicare.
Keywords: Serious Illness, Costs of Care, Caregiving, Dementia
INTRODUCTION
Serious illness is “a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life, or excessively strains their caregivers.”1,2 In older adults, serious illness predominantly comprises three manifestations: dementia, activity of daily living (ADL) impairment, and other advanced medical conditions (e.g. heart failure requiring hospitalization).3 Dementia, ADL impairment and advanced medical conditions are heterogenous, with dementia perhaps distinguished by its intense care needs.4–6 Dementia is a serious illness, which progressively results in decreasing functional capacity, and which stands out among other illnesses in its more frequent and intense caregiving needs; meaning, its clinical course mirrors the definition of serious illness. Dementia typically results in increasing reliance on others for both physical and cognitive management of health issues, which makes it unique in its potential impacts on families and communities.
Care of persons with dementia (PWD) consumes vast societal resources while also placing burden on families. For PWD 65 years and older, Medicare costs are estimated to be three times higher than for those without dementia and Medicaid costs are estimated to be 22 times higher for PWD compared to those without dementia.7 Concurrently, families and friends of PWD provide the majority of care for PWD through unpaid caregiving assistance.4 In comparison to caregivers of older adults with other chronic illnesses, caregivers of PWD provide assistance with a larger number of daily tasks and are at higher risk of caregiver strain.4,8 Consequently, a disproportionate share of the higher costs associated with dementia care fall directly on PWD and their families due out-of-pocket spending, largely for caregiving support.9,10 A significant proportion of the spending for Medicare, Medicaid, and PWD and their families reflect the disproportionate need for long-term services and supports and institutional care for PWD; 24% of Medicare beneficiaries with dementia reside in a nursing home compared to 1% of beneficiaries without dementia and over a third of older adults in residential care settings (e.g. assisted living facility) have dementia.7,11
While the literature on care of PWD and older adults with other manifestations of serious illness (advanced medical condition, ADL impairment) is growing, studies often examine each manifestation of serious illness alone.8,12–14 Less is known about how the manifestations of serious illness differ from one another in their impact, and even less is known about the implications of having more than one manifestation of serious illness.15,16 Given that the natural history of dementia includes progressive functional impairment and an estimated 90% of PWD have a chronic condition (e.g. diabetes mellitus type 2), which could worsen and become an advanced medical condition (e.g. diabetes mellitus type 2 with a severe complication such as peripheral arterial disease), manifestations of serious illness co-occur.15,17 In a study of older adults with serious illness in the last year of life, one-third of older adults with dementia had an advanced medical condition; however, the frequency of dementia and an advanced medical condition co-occurring in a population that is not in the last year of life has not been described.15 In a time of increased policy and research attention on improving dementia care, we need a more nuanced understanding of coexistent manifestations of serious illness in PWD and the impact on the care experience of PWD, their caregivers and the health care system.18
We sought to describe the population of older adults in the United States who face not only dementia, but another manifestation of serious illness (i.e. ADL impairment or another advanced medical condition) and associations of these combinations of manifestations of serious illness with costs for society, individuals with serious illness and their families by measuring health care utilization, Medicare spending, intensity of caregiving assistance and out-of-pocket spending.
METHODS
Study Design and Data Sources
We used 2016 data from the Health and Retirement Study (HRS) linked to fee-for-service Medicare claims to conduct a cross-sectional, descriptive study. HRS is an ongoing longitudinal, nationally representative cohort study of adults over the age of 50 in the United States.19 Interviews are conducted with participants every 2 years since 1992 and include questions on sociodemographic characteristics, ADL and instrumental activities of daily living (iADL), caregiving needs, hours of support and cognitive tests. For those who are not able or willing to complete the interview for themselves, a proxy is interviewed. The HRS cohort includes approximately 20,000 older adults in each interview with periodic replenishment; the 2016 wave is a replenishment year. 87% of HRS respondents who report receipt of Medicare consent to an administrative linkage; for these individuals, Medicare claims are available to merge with survey responses. This study was approved by the Institutional Review Board of Icahn School of Medicine at Mount Sinai.
Study Population and Exposure
We limited our study to those who were >65 years and had continuous Medicare Part A and B claims in the 12 months before and after the 2016 HRS interview (n=4503). Serious illness was operationalized using previously published methods.3 Using the components of the operational definition, we assessed subjects for each of three different manifestations of serious illness: (1) advanced medical condition (2) ADL impairment (3) dementia. Those who did not meet criteria for any of these groups were in a separate category, no serious illness, to serve as a point of comparison.
To meet criteria for an advanced medical condition, older adults needed to have one or more of the following advanced medical conditions: (1) cancer, poor prognosis or metastatic; (2) chronic kidney disease stage 5 and end stage renal disease (ESRD); (3) chronic obstructive pulmonary disease or interstitial lung disease (COPD/ILD), only if using home oxygen or hospitalized for the condition; (4) diabetes, only if severe complications (ischemic heart disease, peripheral vascular disease, renal failure); (5) congestive heart failure (CHF), only if using home oxygen or hospitalized for the condition; (6) hip fracture; (7) neurodegenerative disease (e.g., amyotrophic lateral sclerosis); (8) advanced liver disease or cirrhosis; (9) acquired immune deficiency syndrome (AIDS). Severe medical conditions were identified using ICD-9 and 10 codes (as appropriate for time period) in claims from the 12 months prior to the 2016 interview. To meet criteria for ADL impairment, an older adult needed to report receiving assistance with one or more of the six ADLs: eating, bathing, dressing, toileting, transferring, or walking. Dementia was identified using a validated method based on results of cognitive test scores (a modified version of the Telephone Interview for Cognitive Status for self-respondents and the Informant Questionnaire on Cognitive Decline in the Elderly for proxy respondents) and functional measures (ability to perform six ADLs and five iADLs (preparing meals, grocery shopping, making telephone calls, taking medications, managing money) in HRS.20 This method uses ordered probit models to determine the probability that a given person has dementia based on their cognitive scores and functional status. Herein, we focus only on those who were identified by the models as having a 50% or greater probability of having dementia and categorize all others as not having dementia.
Outcome Measures and Covariates
We examined outcomes related to health care utilization, monetary costs, and caregiving intensity. Outcome measures were assessed in the 12 months following the date of the 2016 HRS interview. Health care utilization measures derived from Medicare claims include Emergency Department (ED) use and hospitalization. Monetary costs include total Medicare costs from claims which sum all spending for inpatient, outpatient, skilled-nursing facility, hospice, home care, and durable medical equipment. Out-of-pocket costs were determined from the HRS survey responses. Categories of spending include insurance, hospital, physician, medication, nursing home, hired helpers and in-home medical care. Caregiving intensity was measured by responses to HRS questions about number of individuals who help the older adult in the home, whether helpers were paid, and number of hours of help provided per month. Lastly, we report death in the year after the 2016 interview, determined by Medicare claims and HRS exit date of death.
Additional variables drawn from HRS included age, sex, race/ethnicity, educational attainment (less than or greater than high school diploma), marital status, nursing home residence, proxy respondent, Medicaid insurance, self-rated health, mean number of comorbidities (sum of 7 self-reported chronic conditions).
Statistical Analysis.
First, we categorized older adults into the three non-mutually exclusive manifestations of serious illness (dementia, advanced medical condition, ADL impairment). To understand the overlap between the manifestations of serious illness with dementia, specifically, we then created three mutually exclusive groups representing the potential combinations of dementia with advanced medical condition and ADL impairment: dementia alone, dementia and advanced medical condition (regardless of ADL impairment), dementia with ADL impairment. Given the small size of PWD and an advanced medical condition but no ADL impairment (n=35) we combined this category with those who had dementia, an advanced medical condition and ADL impairment. We recognize that dementia alone and dementia with ADL impairment could also be described as early dementia and advanced dementia respectively; however, herein we use terminology reflecting combinations of manifestations of serious illness to explore how this framework might highlight unique subgroups of PWD. We describe differences in demographic characteristics, health care utilization, Medicare spending, out-of-pocket costs, caregiving intensity and mortality across the three groups. We used survey weights, which mathematically account for sampling frame and differences in response rates by key demographic characteristics, to project estimates of the national population. All analyses were done in Stata 16.
RESULTS
We included a population of 4503 adults age >65 who, when survey weights were applied, represent an estimated population of 22,210,703. Approximately 27% of older adults met criteria for serious illness (n=6,021,866), including 9% with dementia (n=2,024,558), 16% with advanced medical condition (n=3,491,104), and 13% with ADL impairment (n=2,850,707) (proportions represent groups that are not mutually exclusive). Most PWD (67%) met criteria for another manifestation of serious illness, most commonly ADL impairment (Figure 1). Approximately 24% of PWD also had an advanced medical condition (8% advanced medical condition alone, 16% advanced medical condition and ADL impairment).
Figure 1.
Venn Diagram of Weighted Prevalence of Overlap of Three Manifestations of Serious Illness Health and Retirement Study Linked to Medicare fee-for-service claims, 2016. 1Weighted venn diagram made using metachart. Available at: meta-chart.com, accessed November 7, 2022
PWD and another manifestation of serious illness had more chronic conditions and worse self-rated health than PWD alone (Table 1). Compared to PWD alone, PWD and ADL impairment were on average older (89.0 vs. 85.9 years), more likely to be female (75.3% vs 66.7%)and non-Hispanic white (83.6% vs 78.2%), while PWD and an advanced medical condition had approximately the same mean age (85.7 years) and less likely to be female (58.8% vs 66.7%) and non-Hispanic white (68.7% vs 78.2%) than PWD alone. Of the nine advanced medical conditions, diabetes with severe complications and ESRD were proportionally more likely to be comorbid with dementia than the other advanced medical conditions.
Table 1.
Demographic and Clinical Characteristics of Older Adults by Manifestation of Serious Illness
| Not Mutually Exclusive | Mutually Exclusive | ||||||
|---|---|---|---|---|---|---|---|
| Dementia N(%) N=489 |
ADL Impairment N(%) N=661 |
Advanced Medical Condition N(%) N=789 |
Dementia only N(%) N=158 |
Dementia & ADL impairment only N(%) N=215 |
Dementia & Advanced Medical Condition +/− ADL impairment N(%) N=116 |
No Serious Illness N(%) N=3115 |
|
| Age, mean (SD) | 87.26(7.82) | 82.92(9.64) | 78.02(8.33) | 85.91 (7.78) | 89.0 (7.24) | 85.68(8.13) | 75.09 (6.96) |
| Female | 336(68.75) | 442(66.72) | 450(55.42) | 109 (66.69) | 155 (75.34) | 72 (58.82) | 1851 (56.29) |
| Race/Ethnicity | |||||||
| Non-Hispanic White | 347(78.41) | 469(80.05) | 583(81.29) | 115 (78.24) | 161 (83.62) | 71 (68.73) | 2569 (88.08) |
| Non-Hispanic Black | 82(11.69) | 117(10.13) | 126(10) | NR | NR | NR | 321 (5.73) |
| Hispanic | 48(7.66) | 61(8.09) | 61(6.23) | NR | NR | NR | 165 (3.85) |
| ≥High School Education | 317(67.95) | 452(71.48) | 601(79.12) | 107 (70.48) | 144 (70.29) | 66 (60.3) | 2738 (90.4) |
| Married | 145(27.58) | 235(34.53) | 362(47.64) | 62 (40.75) | 50 (20.74) | 33 (23.83) | 1706 (58.45) |
| Nursing Home Resident | 168(38.15) | 189(30.2) | 70(8.81) | NR | 115 (57.26) | NR | 29 (.94) |
| Proxy Respondent | 234(48.77) | 220(32.84) | 72(8.46) | 27 (16.6) | 155 (71.52) | 52 (46.43) | 42 (1.41) |
| Has Medicaid | 142(32.42) | 199(32.38) | 155(19.58) | NR | 70 (36.74) | NR | 201 (5.74) |
| Self-Rated Health (Poor/Fair) | 289(56.14) | 467(69.47) | 466(58.70) | 51 (28.19) | 152 (67.29) | 86 (70.51) | 655 (19.06) |
| No. of Conditions, mean (SD) | 2.32(1.14) | 2.54(1.17) | 2.93(1.11) | 1.59 (1.04) | 2.35 (1.1) | 2.83 (0.93) | 2.23 (.95) |
| Dementia (>1 ICD code) | 37(7.31) | 36(5.01) | NR | NR | NR | NR | NR |
| Metastatic Cancer | NR | 34(5.32) | 133(18.77) | 0 (0) | 0 (0) | NR | 0 (0) |
| Advanced kidney disease | 29(6.2) | 49(7.37) | 168(19.89) | 0 (0) | 0 (0) | 29 (25.89) | 0 (0) |
| Advanced Heart Failure | NR | 44(6.22) | 122(14.48) | 0 (0) | 0 (0) | NR | 0 (0) |
| COPD/ILD | NR | 45(6.73) | 174(22.76) | 0 (0) | 0 (0) | NR | 0 (0) |
| Diabetes w/complication | 57(10.65) | 102(15.3) | 320(39.38) | 0 (0) | 0 (0) | 57 (44.49) | 0 (0) |
| Cirrhosis | NR | NR | 61(8.22) | 0 (0) | 0 (0) | NR | 0 (0) |
| ADL Dependent | 296(62.01) | 661(100) | 220(26.84) | 0 (0) | 215 (100) | 81 (68.66) | 0 (0) |
| iADL Dependent | 350(78.37) | 506(79.43) | 273(34.77) | NR | NR | 92 (83.36) | 231 (6.71) |
ADL=Activity of Daily Living
iADL= Instrumental Activity of Daily Living
NR=Not reportable
Proportionally more PWD and an advanced medical condition had an ED visit or hospital stay in the year after the 2016 HRS interview than PWD alone or PWD and ADL impairment (Table 2). Similarly, mean hospital days were highest among PWD and an advanced medical condition (5.2 days) compared to PWD alone (3.3 days) and PWD and ADL impairment (2.6 days). PWD and ADL impairment were proportionally most likely to die in the year after the 2016 HRS interview when compared to PWD and an advanced medical condition, (37.2% vs 31.2%). Median one-year total Medicare costs were also higher among PWD and an advanced medical condition ($17,900), than among PWD and ADL impairment ($8,962) and PWD alone ($4,376). Further, median one-year total Medicare costs for PWD and an advanced medical condition were also 40% higher than for the overall population of older adults with an advanced medical condition ($17,353 vs $12,013), though costs for PWD and ADL impairment were slightly lower than costs for the overall population of older adults with ADL impairment ($8,962 vs $11,665).
Table 2.
Health Care Utilization and Total Medicare Costs for Older Adults with Serious Illness by Manifestation of Serious Illness
| Not Mutually Exclusive | Mutually Exclusive | ||||||
|---|---|---|---|---|---|---|---|
| Dementia N(%) N=489 |
ADL Impairment N(%) N=661 |
Advanced Medical Condition N(%) N=789 |
Dementia only N(%) N=158 |
Dementia & ADL impairment only N(%) N=215 |
Dementia & Advanced Medical Condition +/− ADL impairment N(%) N=116 |
No Serious Illness N(%) N=3115 |
|
| Emergency Department Visit | 278 (57.3) | 385 (57.1) | 453 (55.6) | 87 (56.2) | 115 (53.6) | 76 (65.94) | 881 (26.2) |
| Hospital Admission | 193 (39.6) | 269 (40.0) | 312 (36.8) | 59 (39.7) | 77 (33.9) | 57 (50.23) | 437 (13.3) |
| Total Hospital Days, mean (SD) | 3.4 (8.6) | 4.3 (10.0) | 4.2 (10.5) | 3.3 (10.2) | 2.6 (5.3) | 5.2 (10.94) | 1.1 (5.0) |
| Total Medicare Costs, mean (SD) | $19,640 (28,734) | $25,199 (36,838) | $23,209 (35,892) | $14,839 (25,482) | $18,029 (22,391) | $28,821 (36,244) | $7,518 (16,910) |
| Total Medicare Costs, median (IQR) | $8,734 ($2,011 – $28,630) | $11,665 ($2,738 – 29,606) | $12,013 ($4,174 – 32,077) | $4,376 ($915 – 16,108) | $8,962 ($2,465 – $28,630) | $17,900 ($5,394 – 41,084) | $2,293 ($778 – 5,985) |
| Died | 123 (26.7) | 145 (21.8) | 99 (12.1) | NR | 79 (37.2) | NR | 55 (2.1) |
ADL= Activity of Daily Living
NR= Not reportable
In contrast, mean total hours of help per month were similar for PWD and an advanced medical condition and PWD and ADL impairment (142.9 and 141.9 hours respectively), while mean hours of help were much lower for PWD alone (47.7 hours) (Table 3). PWD and an advanced medical condition had fewer hours of paid help (32.4 vs 47.9 mean hours per month) but more hours of unpaid help (139.2 vs 94.0 mean hours per month) than PWD and ADL impairment. Median one-year out-of-pocket costs for patients and families were highest for PWD and ADL impairment ($13,262) followed by PWD and an advanced medical condition ($10,837) and then PWD alone ($7,018) (Figure 2). Compared to the overall population of older adults with an advanced medical condition, PWD and an advanced medical condition had almost three times the mean number of caregiving hours per month (142.9 vs 51.4 hours) and mean out-of-pocket costs were higher for PWD and an advanced medical condition than for the overall population with an advanced medical condition alone ($42,714 vs $24,112) though median costs were similar across the two groups.
Table 3.
Estimated Caregiving Hours per Month, Number of Caregivers and One-Year Out of Pocket Expenditures for Older Adults by Manifestation of Serious Illness
| Not Mutually Exclusive | Mutually Exclusive | |||||||
|---|---|---|---|---|---|---|---|---|
| Dementia N(%) N=489 |
ADL Impairment N(%) N=661 |
Advanced Medical Condition N(%) N=789 |
Dementia only N(%) N=158 |
Dementia & ADL impairment only N(%) N=215 |
Dementia & Advanced Medical Condition +/−ADL impairment N(%) N=116 |
No Serious Illness N(%) N=3115 |
||
| Total hours help per month | Mean (SD) | 113.4 (239.0) |
123.0 (231.7) | 51.4 (149.5) | 47.7 (150.7) | 141.9 (261.1) | 142.9 (258.2) | 3.2 (27.8) |
| Median (IQR) | 15 (0 – 120) |
5 (30 – 150) |
0 (0 – 29) |
0 (0 – 23) |
30 (3 – 160) |
36 (1 – 185) |
0 (0 – 0) |
|
| Hours of help from paid helpers | Mean (SD) | 37.9 (143.4) |
34.4 (122.3) | 25.7 (93.7) |
11.7 (49.9) |
47.9 (164.4) | 32.4 (122.6) | 8.2 (36.7) |
| Median (IQR) | 0 (0 – 0) |
0 (0 – 0) |
0 (0 – 0) |
0 (0 – 0) |
0 (0 – 0) |
0 (0 – 0) |
0 | |
| Hours of help from unpaid helpers | Mean (SD) | 106.1 (210.9) |
96.6 (195.2) | 105.7 (194.2) | 98.2 (206.6) | 94.0 (192.7) | 139.2 (245.8) | 43.9 (96.3) |
| Median (IQR) | 28 (2 – 120) |
2 (27 – 90) |
30 (3 – 120) |
30 (2 – 93) |
24 (2 – 90) |
60 (5 – 185.1) |
12 (3 – 39) |
|
| Total number of helpers | Mean (SD) | 1.9 (1.6) |
2.2 (1.4) |
0.8 (1.3) |
0.7 (1.1) |
2.5 (1.3) |
2.1 (1.7) |
0.1 (.4) |
| Median (IQR) | 2 (1 – 3) |
2 (1 – 3) |
0 (0 – 1) |
0 (0 – 1) |
2 (2 – 3) |
2 (1 – 3) |
0 (0 – 0) |
|
| Number of paid helpers | Mean (SD) | 0.8 (0.8) |
0.7 (0.8) |
0.5 (0.7) |
0.2 (0.5) |
1.0 (0.9) |
0.7 (0.6) |
0.2 (0.6) |
| Median (IQR) | 1 (0 – 1) |
0 (0 – 1) |
0 (0 – 1) |
0 (0 – 0) |
1 (1 – 1) |
1 (0 – 1) |
0 (0 – 0) |
|
| Number of unpaid helpers | Mean (SD) | 1.6 (1.2) |
1.5 (1.3) |
1.5 (1.3) |
1.4 (0.9) |
1.5 (1.2) |
1.8 (1.4) |
1.4 (0.8) |
| Median (IQR) | 1 (1 – 2) |
1 (1 – 2) |
1 (1 – 2) |
1 (1 – 2) |
1 (1 – 2) |
1 (1 – 2) |
1 (1 – 2) |
|
| One-Year Total Out of Pocket Expenditures | Mean (SD) | $55,767 (136,320) |
$53,052 (133,972) | $24,112 (72,209) | $18,959.7 (57,215.7) | $87,478.6 (169,858.9) | $42,714 (109,887) | $13,061.5 (28,394.0) |
| Median (IQR) | $10,835 (4,367 – 25,526) | $11,077 (4,184 – 22,125) | $10,577 (5,256 – 17,300) | $7,017.6 (4,388 – 15,556) | $13,261.9 (4,999 – 44,761) | $10,837 (3,149 – 25,526) | $9,881.4 (5,667 – 14,685) |
|
ADL= Activity of Daily Living
Figure 2.
Median One-Year Fee-for-Service Medicare and Out of Pocket Expenditures For Older Adults with Dementia by Manifestation of Serious Illness. Bar chart of Median Medicare costs and out-of-pocket costs for patients and families across four groups: dementia (all encompassing), dementia only (without ADL impairment or advanced medical condition), dementia and ADL impairment, dementia and an advanced medical condition. ADL= Activity of Daily Living
DISCUSSION
We found that additional manifestations of serious illness are common among PWD and have important implications for health care utilization, Medicare costs, caregiving intensity and out-of-pocket costs for patients and families. The combination of dementia and an advanced medical condition is more costly for Medicare and associated with more hospital and ED use, while the combination of dementia and ADL impairment is more costly to patients and families. These results suggest that older adults with dementia comprise a heterogenous group with varying needs, and policies and interventions aimed at improving care for PWD may need to consider these differences to effectively design and target their services.
This framework using three key manifestations of serious illness can help identify unique subgroups of PWD who may benefit from more targeted interventions. For example, focusing on Medicare costs, our data suggest that median annual total Medicare costs are twice as high for PWD and an ADL impairment and four times as high for PWD and an advanced medical condition than for PWD alone. This means that interventions or policies focused on lowering Medicare costs for the highest cost subset of PWD are likely including a large proportion of PWD who also have an advanced medical condition and many who also have ADL impairment. Therefore, interventions focused on high cost Medicare beneficiaries with dementia would ideally be focused not only on dementia care, but also on ADL supports and aligning care for advanced medical conditions with the older adult and family goals and priorities for care. Several promising interventions for PWD exist, in particular collaborative care models which include multiple components such as continuous monitoring and assessment of the PWD and caregiver’s needs, development of a care plan, caregiver support in management of behavioral and neuropsychiatric symptoms, and coordination of care. These interventions have been associated with longer time to transition from home to nursing home, reduction in risk of emergency department visits and reduced caregiver burden.21,22 However, dissemination of these interventions has been limited by current reimbursement models, and policy changes are needed to more broadly support dissemination. Further, while these interventions have demonstrated important outcomes, these interventions were designed with a dementia-specific lens and it is unclear if these interventions would need further adaptation to address the more complex needs of PWD who also have another manifestation of serious illness.
Interventions or policies focused on improving support for caregivers of PWD or lowering financial strain for PWD may also be most impactful by targeting the subgroup of PWD who also have another manifestation of serious illness. We found that mean total caregiving hours were approximately three times higher and out-of-pocket costs were also higher for PWD and another manifestation of serious illness than for PWD alone. This means that for PWD alone, caregiving interventions may want to consider a focus on planning for the future, such as creating a caregiver plan and a financial plan that anticipates an increase in caregiving needs and out-of-pocket costs over time as the person with dementia either develops ADL impairment or has progression of a comorbid chronic illness to an advanced medical condition. For PWD and ADL impairment or an advanced medical condition, interventions and policies focused on caregiver respite, financial support for caregiving hours or other out-of-pocket expenses are needed.
Beyond examining individual subgroups of PWD, our results also indicate when older adults with an advanced medical condition also have dementia, that it comes at a great cost to Medicare and is associated with greatly increased caregiving needs. Compared to the overall population of older adults with an advanced medical condition, the subset with an advanced medical condition and dementia are more costly for Medicare, and are more likely to have hospital and emergency department visits. This is in line with other studies of dementia and advanced medical conditions which demonstrate high costs of care, higher risk of mortality and/or increased health care utilization when dementia and an advanced medical condition co-occur.23–25 Interestingly, the same pattern was not observed when the overall population of older adults with ADL impairment were compared with the subset who had ADL impairment and dementia. While disability in the setting of dementia is known to increase the risk of mortality and costs of care, our results add novel evidence that costs are not substantially greater for older adults with ADL impairment and dementia than for the general population with ADL impairment.16,26
There are limitations to this study. First, we used cross-sectional design and report on averages observed during a given year. It is likely that health care use and caregiving needs vary substantially over the course of a person’s illness and longitudinal methods may be needed to more fully understand the relationships studied herein. Second, we use validated methods to identify older adults with probable dementia in HRS, which may not reflect the population that has a clinical diagnosis of dementia. Third, our study is limited to those with fee-for-service Medicare and thus does not represent the population of older adults with Medicare Advantage.
In sum, PWD commonly have one or more additional manifestations of serious illness. Using the framework of manifestations of serious illness, we identified unique subgroups of PWD who have varying needs and may benefit from targeted interventions and policies.
Key Points.
Most persons with dementia (67%) have another manifestation of serious illness (either an advanced medical condition or impairment in an activity of daily living).
PWD and an advanced medical condition have more than twice the median annual Medicare costs of PWD and an ADL impairment and more than four times the median annual Medicare costs of PWD alone.
PWD and another manifestation of serious illness have significantly greater caregiving needs and out-of-pocket costs than PWD alone.
Why does this paper matter?
Understanding the heterogeneity of the population of PWD can help target interventions and policies at appropriate subgroups.
Acknowledgements
Funding Sources:
Stephanie Nothelle, MD acknowledges K23AG072037, Amy Kelley, MS MSHS acknowledges P01AG066605 and K24AG062785, Ken Covinsky P01AG066605 and P30AG044281 all from the National Institutes on Aging.
Sponsor’s Role: The sponsor had no role in the design, analysis or preparation of the paper.
Footnotes
Conflict of Interest: The authors have no conflicts of interest to declare.
Previous presentations: An earlier version of this work was presented at the American Geriatrics Society Annual Meeting in Orlando, FL in May 2022.
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