More than dollars: Healthcare utilization among spouses of persons with dementia

Being the spouse of a person with dementia can be a significant source of strain and can negatively impact one's health.¹ Although not all spouses serve as the primary caregiver, many spouses provide physical or emotional support to the person with dementia. Studies have shown that spouses of persons with dementia are more likely to have depression, anxiety, and sleep disturbances compared with spouses of persons who do not have dementia.^2-4 Identifying opportunities to improve health among spouses of persons with dementia is essential. In the United States, families provide most of the long-term care to persons with dementia.¹ Family members need to maintain sufficient health to fulfill caregiving roles and responsibilities to sustain this system. Spouses of a person with dementia may have less time and fewer financial resources to participate in recommended health behaviors and receive healthcare services, which, over time, may impact their ability to care for the person with dementia.⁵

In this issue, Ingraham et al. present the results of a matched study examining Medicare Fee-for-Service expenditures for spouses of persons living with dementia compared with spouses of persons without dementia in the 5 years after the person with dementia was diagnosed with dementia.⁶ Using the Health and Retirement Study with linked Medicare Claims, the authors measured three categories of health utilization costs: (1) inpatient or hospital expenditures; (2) outpatient or ambulatory expenditures, which included emergency room visits if a hospitalization did not follow the visit; and (3) skilled nursing facility, hospice, and home health expenditures. In the adjusted analysis, there was no difference in total Medicare expenditures between spouses of persons with dementia and spouses of persons without dementia in the 5 years after dementia was diagnosed. However, in Year 5, there was an increase in total Medicare expenditures among spouses of persons living with dementia driven by an increase in inpatient expenditures, with a total difference of $2748 (95% CI $321–$5447).

The results of this study differ from prior matched studies examining healthcare expenditures among spouses of persons living with dementia.^{3, 4, 7, 8} As the authors note, prior studies had relied on claims data to identify persons with dementia, while the methods used by Ingraham et al. for identifying incident diagnoses of dementia from the Health and Retirement Study identified adults at an earlier stage of the disease. However, several other differences existed between this study and prior published studies. These include the methods by which spouses were identified, the type of insurance the spouse had, and the types of expenditures included in the total expenditures.^{3, 4, 7, 8} In addition, Ingraham et al. matched the spouses based on whether their partner needed help with activities of daily living and instrumental activities of daily living, which was not done in prior studies. Regardless, the study from Ingraham et al. adds to our overall understanding that healthcare expenditures for spouses of persons with dementia are at least the same as healthcare expenditures for spouses of persons without dementia and maybe greater for some types of healthcare expenditures.

With the broad categories of healthcare expenditures, it is impossible to know what the expenditures represent. In a study of older adults with multiple chronic medical conditions, one would expect there to be healthcare expenditures in both groups. However, similar healthcare expenditures between the two groups do not mean that the groups are receiving equivalent care. In the United States, where overuse, underuse, and misuse of health care are common, the broad categories of healthcare expenditures do not provide insights into the quality or value of the care received.⁹ In a study published 20 years ago, spouses of persons living with dementia had a higher number of emergency room visits compared with spouses of persons without dementia.⁴ Whether this is still the case is not addressed in the current study, but it does raise the question of whether there are meaningful differences in the care received that are not reflected in the total expenditures. Understanding differences in the care received between the two groups may provide insights into opportunities for interventions to improve the health of spouses of persons with dementia.

The increased inpatient expenditures for spouses in the fifth year following diagnosis are concerning. This is consistent with prior literature on caregivers of persons with dementia who are more likely to have an overnight hospitalization when the care recipient has more advanced impairments and when the caregiver has been providing care for a longer duration.^{10, 11} Hospital admissions are not benign. The functional and cognitive decline commonly seen in hospitalized older adults may impact the spouse's ability to fulfill caregiving responsibilities.^{12, 13} Persons with dementia are at increased risk for mortality, and in this study, 41% of persons with dementia died within the 5-year follow-up.⁶ Yet, that still leaves over half of the spousal dyads alive at the end of 5 years. For these couples, hospitalization of the spouse may create a domino effect where hospitalization of the spouse leads to unanticipated or unwanted changes for the person with dementia (Figure 1).

Focusing on only the care received by the spouse is an incomplete story. Just as caring for a person with dementia impacts the health of the spouse, hospitalization of the spouse likely impacts the person with dementia. Prior research has shown that hospitalization of an older adult can increase the risk of death in their spouse in the subsequent year.¹⁴ Hospitalization of a family member for a serious physical illness also increases the mean per person medical charges in the subsequent 3 years for the family.¹⁵ Although the literature specific to spouses of persons with dementia is limited, one study showed that persons with dementia are at increased risk for admission to the hospital if their spouse had been admitted to the hospital in the prior 180 days.¹⁶ Thus, it is likely that the expenditures seen in the spouse can impact healthcare expenditures and outcomes for the person with dementia. Examining healthcare expenditures for spouses in isolation may underestimate the actual cost of healthcare utilization.

The research literature on what happens after a spouse of a person with dementia is hospitalized is almost nonexistent. However, any clinician who cares for older adults has many anecdotes, and it is not a stretch to think of a plausible scenario for what could happen (Figure 1). Hospitalization of the spouse may result in acute declines in the spouse's function, cognition, and health. This may result in a mismatch between the person with dementia's care needs and the capacity of the spouse to provide the care needed, triggering hospitalization for the person with dementia. Less capable of meeting the person with dementia's care needs, the spouse may be forced to move the person with dementia to a nursing home before they had intended. Moving the person with dementia to a nursing home may trigger or worsen depression and anxiety in the spouse, resulting in further declines in their health.¹⁷ The initial hospitalization is not just a healthcare expenditure. It is the beginning of a story of what happens to two people whose health and well-being are connected.

Regardless of the total amount of healthcare expenditures of spouses of persons with dementia, these adults are receiving health care. They are coming to our clinics, visiting our emergency rooms, being admitted to our hospitals, and staying at our skilled nursing facilities. In the absence of more effective disease-modifying treatments, the need to support spouses and other family caregivers of persons with dementia will remain an urgent need. To truly understand what health systems can do, more nuanced information is needed about the types of care spouses are receiving and the impact of this care on spouses and persons with dementia.

MH created the concept for the editorial, wrote the editorial, and prepared the editorial for publication.

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This work is supported in part by the Office of Research and Development, Houston Health Services Research and Development Center for Innovations in Quality, Effectiveness and Safety (IQuESt) grant (CIN 13–413) at the Michael E. DeBakey VA Medical Center, Houston, TX. Dr. Horstman is supported by Career Development Award Number 1IK2HX003163-01A2 from the United States Department of Veterans Affairs Health Services Research and Development Service of the VA Office of Research and Development.