Abstract
Background:
Heart failure (HF) and dementia both have profound effects on function and mortality in older persons. However, we have limited knowledge about the impact of co-occurring HF and dementia. Our goal was to understand how often persons with HF have dementia and the impact of their cooccurrence.
Methods:
Retrospective analysis of participants (age > 65) in the 2015 wave of the nationally representative Health and Aging Trends Study (NHATS) with linkage to Medicare claims. 912 participants with HF (45% older than 80, 51% women) using Medicare claims. We used the validated NHATS dementia algorithm to identify those with probable dementia. Outcomes of interest included the need for help with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) at baseline, functional decline, hospitalization over 1 year, and mortality over 2-years. Baseline functional status, functional decline, and hospitalization were compared using adjusted logistic regression, mortality was analyzed using adjusted Cox regression models adjusted for demographics, socioeconomic status, baseline health, and baseline functional status.
Results:
200 (21%) of the participants with HF also had dementia. For each I/ADL, patients with both HF and dementia were more likely to need help than those with HF without dementia. 71.8% of participants with HF and dementia needed help with medications versus 16.6% with HF without dementia (p < 0.001). Having HF and dementia was associated with an increased risk of requiring help with additional ADLs after one year (aOR = 2.69, 95% CI 1.53, 4.73). Participants with HF and dementia had an increased risk of being hospitalized within one year (aOR = 2.02 95% CI 1.16, 3.54), or dying within two years (aHR = 1.52 95% CI 1.03, 2.26).
Conclusions:
One-fifth of persons over age 65 with HF also have comorbid dementia. Co-occurring HF and dementia markedly increase functional impairment and subsequent ADL decline, hospitalization, and death. These results highlight the need for physician awareness for signs of dementia, and appropriate adjustments in the management of HF.
BACKGROUND
Both heart failure (HF) and dementia markedly increase in prevalence with advancing age. Over 15% of persons 70 years of age and above compared to just 1%–2% of the population under 70 have HF1. The prevalence of dementia nearly doubles every 5 years in persons over 60, starting at 1%–2%, rising to over 20% at age 80.1 Thus, it is likely that a substantial proportion of persons with HF also have dementia, whether diagnosed, or not diagnosed.2 Clinical guidelines for patients with HF pay scant attention to the possibility of co-existing dementia, and it is not clear how often clinicians tailor the management of patients with HF to the needs of those with co-existing dementia.3
There are several reasons dementia might impact the clinical characteristics of patients in ways that have profound implications for the care of persons with HF. Dementia impacts a patient’s ability to complete basic and instrumental activities of daily living, but we are aware of little data that compares instrumental activities of daily living (IADL), and activities of daily living (ADL) needs of HF patients with and without dementia. These data are important because the need for help with these activities may have profound implications for a patient’s care and the wellbeing of their caregivers. For example, most patients with HF require treatment with diuretics, often necessitating multiple additional bathroom trips each day. For patients who need help with toileting or in-home mobility, this can lead to even greater dependence on family and paid caregivers to provide mobility and toileting assistance. Similarly, HF care demands managing complex medication and dietary regimens,3 which would need to be completed by caregivers for patients who need help with managing medications or preparing meals.
In addition, all persons with HF or dementia should be invited to engage in advanced care planning. Patients with these conditions benefit when palliative care is integrated into their care plans. Understanding the risks for potential adverse outcomes including death, hospitalization, and progression of disability4 can be useful in helping patients and caregivers plan for future needs and guide the provision of palliative care.
To address these concerns, we used the nationally representative National Health and Aging Trends Study (NHATS) to better understand the implications of co-existing HF and dementia. First, we determined the prevalence of dementia among persons with HF. Second, we compared prevalence of ADL and IADL dependence among HF patients with and without dementia. Third, we examined how comorbid dementia impacts the risk of death, disability progression, and hospitalization in patients with HF.
METHODS
Study sample and design
NHATS is a nationally representative longitudinal study of Medicare beneficiaries ages 65 and older with oversampling of the oldest age groups and non-Hispanic Black persons. NHATS participants, or their proxies, are interviewed annually to assess the functional status and health of older adults. The first wave of NHATS participants was enrolled in 2011 and then replenished in 2015. Details of the complete NHATS study design, survey questionnaire, and sampling methodology can be found elsewhere.5,6
Our HF cohort was identified from the 2015 wave of NHATS by filtering for a diagnosis of HF using the Chronic Conditions Warehouse International Classification of Disease-9 (CCW ICD-9) data for all valid codes associated with a diagnosis or treatment of HF. The full list of HF codes used for this study can be found in the 27 CCW Chronic Conditions Algorithms Reference List.7
NHATS identifies patients with cognitive impairment utilizing a validated dementia algorithm: report of dementia from a physician, the AD8 dementia screening interview, or cognitive testing such as clock drawing, 10-item recall, Stroop test, and orientation to time and place.8 The cognitive tests target 3 specific domains of cognitive function: memory, orientation, and executive functioning. Participants who score 1.5 standard deviations below the mean in a cognitive domain are classified as having an impairment of that domain. Impairment in at least two domains met the criteria for probable dementia. The cutoff of 1.5 standard deviations is based on commonly used guidelines for determining cognitive impairment.9,10
Outcome measures
NHATS records detailed assessments on ADLs and IADLs. The six basic ADLs include dressing, walking across a room, bathing, eating, getting in and out of bed, and toileting. The five IADLs include preparing a hot meal, shopping for groceries, making phone calls, taking medications, and managing money. The NHATS survey question of whether participants needed help to perform ADLs and IADLs was used to measure baseline function and functional decline. Functional decline was defined as requiring help with one or more new ADLs one year after baseline measurement of ADL status. NHATS also asks whether a participant spent a night in a hospital within the last 12 months. Mortality is measured using Medicare records. If a participant died before the follow-up interview, they were classified as having the outcome.
Outcome analysis
Comparisons of baseline function focused on the prevalence of needing help with each ADLs and IADLs measurement in 2015. We compared the prevalence of functional disability in HF patients between those with and without dementia, adjusting for age and gender. Both functional decline and hospitalizations were assessed using multivariable logistic regression, adjusting for age, gender, race/ethnicity, education, and comorbidities including cancer, lung disease, stroke, diabetes, and baseline functional status. Mortality rate comparisons were analyzed with Cox regression analysis, adjusting for the same variables listed for the functional decline logistic regression analysis.
RESULTS
Prevalence of dementia in persons with HF
Out of 7609 NHATS participants in 2015, we identified 912 with a diagnosis of HF. Of those, 712 participants were classified as not having dementia, and 200 (21%) were classified as having probable dementia. Table 1 compares the demographics and characteristics of study patients with and without dementia.
TABLE 1.
Weighted descriptive statistics of sample characteristics at baseline (2015).
| Demographics | Total (N = 912) | HF, no dementia (n = 712) | HF and dementia (n = 200) | Overall p-value |
|---|---|---|---|---|
| Age in 2015 | ||||
| <80 | 356 (55.3%) | 318 (60.6%) | 38 (30.4%) | <0.001 |
| 80–84 | 214 (18.8%) | 169 (18.3%) | 45 (21.1%) | |
| 85–89 | 174 (14.1%) | 119 (11.8%) | 55 (25.4%) | |
| 90+ | 168 (11.8%) | 106 (9.4%) | 62 (23.2%) | |
|
| ||||
| Gender | ||||
| Men | 399 (48.6%) | 316 (50.1%) | 83 (41.7%) | 0.0522 |
| Women | 513 (51.4%) | 396 (49.9%) | 117 (58.3%) | |
|
| ||||
| Marital status | ||||
| Not married/partnered | 568 (53.9%) | 429 (51.5%) | 139 (65.3%) | 0.0246 |
| Married/partnered | 343 (46.1%) | 283 (48.5%) | 60 (34.7%) | |
|
| ||||
| Race/Ethnicity | ||||
| White, non-hispanic | 615 (77.7%) | 504 (79.8%) | 111 (67.4%) | 0.0156 |
| Black, non-hispanic | 200 (9.1%) | 142 (8.3%) | 58 (12.7%) | |
| Other/DKRF | 97 (13.3%) | 66 (11.9%) | 31 (19.8%) | |
|
| ||||
| Education HS or higher | ||||
| No | 256 (22.9%) | 164 (18.4%) | 92 (45.3%) | <0.001 |
| Yes | 634 (77.1%) | 537 (81.6%) | 97 (54.7%) | |
|
| ||||
| Health variables | ||||
| Cancer | 151 (20.1%) | 124 (21.1%) | 27 (15.2%) | 0.1813 |
|
| ||||
| Lung disease | 268 (29.7%) | 212 (29.5%) | 56 (30.4%) | 0.8405 |
|
| ||||
| Stroke | 110 (13.6%) | 73 (12%) | 37 (21.1%) | 0.0348 |
|
| ||||
| Diabetes | 350 (38.5%) | 281 (40.3%) | 69 (29.9%) | 0.0593 |
|
| ||||
| Hypertension | 746 (81%) | 597 (83.1%) | 149 (71%) | 0.0014 |
|
| ||||
| Depression | 183 (21.4%) | 122 (18.2%) | 61 (37.7%) | <0.001 |
|
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| BMI category | ||||
| Normal | 273 (26.9%) | 195 (24%) | 78 (42.6%) | <0.001 |
| Overweight | 298 (35.4%) | 238 (35.5%) | 60 (34.7%) | |
| Obese | 291 (37.7%) | 258 (40.5%) | 33 (22.7%) | |
Impairments in ADL and IADL that will complicate management of HF
In terms of baseline functionality, after adjustment for age and gender, 9.3% of study participants with HF without dementia reported needing help with at least one ADL compared to 36.4% of participants with HF and dementia (p < 0.001). For example, help using the toilet increased from 4.3% to 20.8% (p < 0.001), and help moving inside the home increased from 7.9% to 38.8% (p < 0.001). When comparing IADLs, 22.9% with HF without dementia reported needing help compared to 58.4% of participants with HF and dementia (p < 0.001). Notably, needing help with taking medication greatly increased, from 16.6% in the HF without dementia group to 71.8% with HF and dementia (p < 0.001). Comparisons on baseline function are illustrated in Figure 1.
FIGURE 1.
The percentage of study participants needing help with all ADLs and IADLs increases in patients with HF and dementia compared to HF without dementia. All comparisons are age and gender adjusted and statistically significant (p < 0.001).
Impact of dementia on outcomes over time
Hospitalization, functional decline, and mortality were the three clinical outcomes measured in this study. We found that participants with HF and dementia had a 2.02 (CI 95% 1.16, 3.54) increased risk of being hospitalized within one year compared to participants with HF without dementia after adjusting for potential confounders. Participants with dementia also had a 2.69 (95% CI 1.53, 4.73) increased risk of functional decline at one year. Finally, participants with HF and dementia had a 1.52 (95% CI 1.03, 2.26) increased risk of dying within two years compared to SPs with HF without dementia. Odds ratios of functional decline, hospitalization, and death are summarized in Table 2. Mortality over time is illustrated in Figure 2.
TABLE 2.
Functional decline or death and hospitalization within 1 year and death within 2 years following interview.
| Outcome rate | Unadjusted OR (95% CI) | Fully adjusted OR (95% CI) | |
|---|---|---|---|
| Functional ecline | 101 (53.2%) | 3.57 (2.26,5.63) | 2.69 (1.53,4.73) |
| Hospitalization | 121 (67.2%) | 2.27 (1.41,3.65) | 2.02 (1.16,3.54) |
| Two-year mortality | 0.99 (44.7%) | 2.98 (2.11,4.19) | 1.52 (1.03,2.26) |
FIGURE 2.
Decreased survival over two years since 2015 NHATS interview in patients with HF and dementia compared to those with HF without dementia.
DISCUSSION
Management of HF is complex, often involving multiple medications, diet and exercise changes, symptom recommendations, and clinical appointments over an extended period. Our study presents important findings about the prevalence of dementia in patients with HF and its implications for management and outcomes. First, dementia is common in persons with HF, present in 21% of patients. Second, patients with co-existing dementia are much more likely to need help with ADLs and IADLs that have implications for patient management including medication management, cooking, toileting, and transferring out of a chair. Finally, dementia was independently associated with multiple adverse outcomes, including hospitalization, loss of ADL function, and mortality.
The need for help with medication management can have profound impact on HF outcomes. Currently, the USPSTF has found insufficient evidence for or against screening for cognitive impairment in individuals with no symptoms.11 However, several previous studies12,13 have found that memory deficits predict decreased medication adherence and thus worse outcomes like hospitalization and death. Due to the increased frequency of cognitive impairment in older adults, including those with HF, medication non-adherence should prompt a screen for cognitive decline, and potentially medication management adjustment. Adjustments to HF medication management may include decreasing the number of prescribed medications, using drug combinations to reduce pill burden, or easy-to-follow schedules and alarms to remind patients to take their medication. More frequent memory and cognitive testing may also be necessary when a physician notices a previously adherent patient, become less so.
The need for assistance with IADLs and ADLs is likely to be associated with impairments in health literacy and disease management, which physicians should be aware of. For example, the high prevalence of difficulty with in-home mobility also has significant implications for diuretic management as each trip to the bathroom can become a significant ordeal. Diuretic use may increase the risk of urinary incontinence and falls, necessitating the need for personal caregiver assistance. Advocating for supportive services at home may be necessary if the patient does not have access to a regular caregiver.
Caregiver education is effective in improving disease management for older adults with caregivers. Studies have also shown that meeting with caregivers and ensuring their needs are met has indirect health benefits for the care recipient.14 Caregivers of patients with dementia are at high risk for depression and often endure significant negative economic consequences from caregiving.15 The high rate of functional decline makes it likely that the capacity for self-care and management of HF will continue to decline over time which could result in further clinical deterioration as well as increasing work and stress on the caregiver.
The limited prognosis of persons with both HF and dementia highlights the need to balance the quality of life needs of the patient and caregiver with what might be considered standard guideline-directed HF care in less complex patients. In some cases, patients may have better outcomes with simplified HF regimens rather than the more complex regimens recommended by guidelines because patients will actually be able to adhere to the simpler regimen. Also, complex medical regimens often necessitate long-term care placement, yet many patients and families will prefer the option of being able to age in place with a simplified management approach. While such treatment plans may seem discordant with traditional guideline-directed care, these options may in fact be more aligned with the personal goals and preferences of the patient.
A community-based study from 20224 found that the risk of hospitalization increased by 73% in patients with pre-existing HF who then developed Alzheimer’s disease or Alzheimer’s related dementia compared to patients with HF without dementia. Similarly, we found that patients with dementia had a 2.02 (1.16, 3.54) increased risk of being hospitalized within one year. These increased hospitalization rates increase strain on already stressed healthcare systems as evidenced by a recent meta-analysis which found the average cost of HF-specific hospitalization to be 10× more expensive than an outpatient visit for HF.16
LIMITATIONS
Since we used claims data to identify HF, we had limited data on the severity of HF and could not identify whether patients had HF with reduced or preserved ejection fraction. Second, our study sample was limited to NHATS subjects with fee-for-service Medicare as we lacked claims on subjects with Medicare Advantage. Third, we do not have data on the severity of dementia, or the specific domains of cognitive function most affected. Finally, as subjects are interviewed every year, we are unable to identify subjects who became disabled between their last interview and the time of death. For this reason, we used composite outcomes, counting death as having the outcome in question.
CONCLUSION
We found that 21% of patients with HF also have dementia. HF patients with co-existing dementia were significantly more likely to need assistance in activities such as in-home mobility, using the toilet, and using medicines that complicate the management of HF. Finally, dementia markedly increases the risk of disability progression and death. Our results highlight the need for physicians who care for patients with HF to be alert to the possibility of cognitive impairment, and if present, tailor management based on the capacity of the patient and caregiver. In addition, the goals of care need to be carefully considered, with palliative care integrated within the traditional HF care framework.
Key points
21% of persons over age 65 with HF also have comorbid dementia.
Participants with HF and dementia had significant reduction in function over one-year, increased risk of being hospitalized within one year, or dying within two years.
Why does this paper matter?
Management of HF in patients with co-occurring dementia should be adjusted to maintain optimal quality of life and harm reduction.
Funding information
National Institute on Aging, Grant/Award Number: P01 AG066605; National Institute of Health, Grant/Award Number: K24 AG062785; UCSF Pepper Center, Grant/Award Number: P30AG044281
Funding provided by the University of California San Francisco, Medical Student Training and Aging Research (MSTAR) program, P01 AG066605 grant award and NIH funding K24 AG062785
SPONSOR’S ROLE
This article was supported by the NIH/NIA through grants P01 AG066605 and K24 AG062785. The National Institute on Aging had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Footnotes
CONFLICT OF INTEREST STATEMENT
Amy S. Kelley, MD, MSHS, is the deputy director of the National Institute on Aging (NIA) at the National Institutes of Health (NIH). Funding for this project was secured prior to her taking the deputy director position. The other authors report no relevant disclosures.
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