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. Author manuscript; available in PMC: 2023 Oct 17.
Published in final edited form as: Am J Hosp Palliat Care. 2019 Dec 19;37(9):683–691. doi: 10.1177/1049909119895497

Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia

Jennifer Gabbard 1,2, Devin Johnson 1, Greg Russell 3, Shenita Spencer 4, Jeff D Williamson 1,2, Laurie E McLouth 5, Keren G Ferris 1, Kaycee Sink 6, Gretchen Brenes 1, Mia Yang 1,2
PMCID: PMC10581031  NIHMSID: NIHMS1935199  PMID: 31854201

Abstract

Background:

Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.

Objective:

To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.

Design:

A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.

Results:

A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD’s physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD’s prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.

Conclusions:

Prognostic discussions between caregivers of PwD and the PwD’s physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.

Keywords: dementia, prognosis, palliative care, advance care planning, older adult

Introduction

Currently, there are approximately 46.8 million people affected by dementia worldwide and this number is expected to double in the next 20 years.1 Dementia is a progressive and incurable condition that, unlike most other terminal illnesses, can span years and is the sixth leading cause of death within the United States.2 Persons with dementia (PwD) typically had severe disability as the disease progresses, with a substantial decline in cognition and function in the past years of life, affecting their ability to care for themselves. During this time, most PwD also experience high symptom burdens that affect their quality of life,2-7 with many of these patients receiving aggressive interventions at the end of life, often without clear benefit.4,8-12

Caring for PwD can place substantial demand on family members who serve as informal caregivers.13 Up to 75% of PwD are cared for at home, primarily by spouses and adult children.14 In addition to serving as an informal caregiver, since capacity often becomes compromised as dementia progresses, caregivers are frequently required to make difficult medical decisions for their loved ones. Mortality is estimated to be at least 2 times higher in PwD than in patients with nondemented, with one study showing the mean time to death after diagnosis was 3.09 years.15-19 Caregivers of PwD need to understand their loved one’s prognosis to make informed treatment decisions. For example, studies have shown that good prognostic awareness leads to less aggressive care at the end of life.20-22 However, there is limited research examining caregivers of PwD’s prognostic awareness and understanding of the clinical trajectory of dementia. In addition, the complex, progressive nature of dementia and its sequelae both for PwD and their informal caregivers underscores the need for palliative care (PC). Palliative care has the potential to reduce the experience of uncontrolled symptoms, promote illness understanding, foster informed decision-making, and reduce caregiver distress.23-26 Unfortunately, multiple studies have shown poor integration of PC into the care of PwD.27-31 The goal of this study is to assess caregivers of PwD’s prognostic awareness, disease understanding of dementia, and PC and to determine whether this may be improving over time. We also looked at caregivers of PwD’s readiness for supportive care services along with rates of advance care planning (ACP) discussions, as these are important indicators of care quality.

Methods and Materials

Study Design

This is a cross-sectional study of 2 cohorts of caregivers of PwD who were seen in the Wake Forest Kulynych Geriatric Consultation Clinic (KGCC). In 2012, 200 hundred surveys were mailed to the primary caregiver of persons who were diagnosed with dementia of any stage and type who had been seen in the KGCC between 2009 and 2012. In 2018, an additional 80 surveys were mailed to a new set of primary caregiver of persons who were diagnosed with dementia of any stage and type who had been seen in the KGCC between 2015 and 2018 to assess trends over time. Consent was implied with completion of the survey. All participants received a $25 gift card for participation. This study was approved by the Wake Forest School of Medicine institutional review board.

Survey Instrument

We designed a 30-item questionnaire to obtain information from caregivers about demographic information, their knowledge of dementia, prognostic awareness, and PC understanding. There were 9 questions related to caregiver demographics (age, gender, race, marital status, relationship to PwD, live with PwD, hours spent caring for PwD, involvement of additional caregivers, and education) and 1 question related to caregiver stress (level of caregiver distress). Four questions related to disease understanding (type of dementia, stage of dementia, if dementia was curable, if dementia was terminal). Two questions related to prognostic understanding and discussions (discussion of PwD’s prognosis, estimated prognosis/life expectancy). Five questions related to readiness for PC services (related to education, goals of care discussions, home visits, spiritual care, and community resources). Three questions related to ACP (goals of care discussions, advance directive/living will, and if a physician had ever talked to them and PwD about ACP and goals/values).

There were additionally 5 questions related to knowledge and confidence for caring for PwD and understanding of palliative (knowledge of etiology of dementia, further challenges, knowledge of PC, confidence of needed support system at home, and confidence in ability to manage further challenges related to PwD).

Statistical Analysis

Descriptive statistics, including means and standard deviations for continuous data and frequencies and proportions for categorical data, were used to summarize the study measures. Fisher exact tests were used to test for differences between the 2 survey periods (2 cohorts). Pooled data were used to assess relationships between outcomes of dementia knowledge, prognosis, and knowledge/confidence with demographic measures, stage, and type of dementia; logistic regression was used to analyze these data. SAS version 9.4 (Cary, North Carolina) was used for all analyses; P < .05 was assumed to be significant. There were small numbers of missing data/nonresponse rate for questions (<5%); and these were not included in analyses.

Results

Baseline Caregiver Demographics

One hundred and fifty-four caregivers of PwD completed the survey (Table 1). There were 114 of 200 (response rate 57%) surveys completed in 2012 and 40 of 80 (response rate 50%) of surveys completed in 2018. With both cohorts combined, 74% (n = 115) were female. Most of the respondents were non-Hispanic white (92.8%) and 50.6% (n = 78) were spouses of the PwD. Fifty-eight percent of caregivers lived with the patient. Most (70%) reported spending ≤15 h/d in the role of a caregiver, and 74% reported there was more than 1 caregiver who provide assistance. The majority (82.2%) had a college or higher level of education. Among the 2018 cohort, 40% rated their stress as mild, 43% as moderate, and 16.7% as severe (this was not assessed in the 2012 cohort).

Table 1.

Caregiver and Care Recipient Descriptive Information.

Cohort 1 (2012), N = 114 Cohort 2 (2018), N = 40 Total Sample (Pooled Data) P a
Variable n (%) n (%) n (%)
Age, mean ± SD 66.5 ± 12.9 62.6 ± 13.8 65.5 ± 12.2 .11
Gender: Female 84 (73.6) 31 (77.5) 115 (74.7) .68
Education .10
 <9 years 0 (0.0) 0 (0.0) 0 (0.0)
 9-12 years 19 (16.9) 5 (12.5) 24 (17.8)
 Some college 34 (30.3) 6 (15) 40 (26.3)
 Bachelor’s degree 34 (30.4) 14 (35.0) 48 (31.6)
 Masters/PhD 22 (19.5) 15 (37.5) 37 (24.3)
Relationship to patient .026
 Spouse 65 (57.0) 12 (32.5) 78 (50.6)
 Daughter 37 (32.5) 16 (40.0) 53 (34.4)
 Daughter-in-law 1 (0.8) 1 (2.5) 2 (1.3)
 Son 6 (5.2) 4 (10.0) 10 (6.5)
 Sibling 1 (0.8) 1 (2.5) 2 (1.3)
 Other 4 (3.5) 5 (12.5) 9 (5.8)
Marital statusb
 Single/never married b 5 (15.6) 5 (15.6)
 Married/partner b 22 (68.8) 22 (68.8)
 Divorced/separated b 4 (12.5) 4 (12.5)
 Widowed b 1 (3.1) 1 (3.1)
Race .011
 White 108 (97.3) 34 (85) 142 (92.8)
 Black 3 (2.7) 5 (12.5) 8 (5.2)
 Hispanic 0 (0.0) 0 (0.0) 0 (0.0)
 Other 0 (0.0) 1 (2.5) 1 (2.5)
Lives with the patient (yes) 70 (61.9) 18 (45.0) 88 (57.5) .068
Hours a week with patient, hours .31
 0-5 13 (31.7) 3 (18.8) 16 (28.0)
 6-10 12 (20.3) 3 (18.7) 15 (26.3)
 11-15 6 (14.6) 3 (18.7) 9 (15.8)
 16-20 4 (9.7) 2 (12.5) 6 (10.5)
 20-40 6 (14.6) 3 (18.7) 9 (15.8)
 >40 0 (0.0) 2 (12.5) 2 (3.5)
Other caregivers provide care (yes)b b 23 (74.2) 23 (74.2)
Caregiver stressb
 Severe b 5 (16.7) 5 (16.7)
 Moderate b 13 (43.3) 13 (43.3)
 Mild b 12 (40.0) 12 (40.0)
 None b 0 (0.0) 0 (0.0)
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Abbreviation: SD, standard deviation.

a

Cohort 1 versus cohort 2.

b

Not assessed in cohort 1.

Disease Understanding

See Table 2 for caregiver disease understanding for the overall combined sample, individual cohorts, and cohort comparisons. Almost all caregivers reported they knew what type of dementia their loved one had (96%) and their loved one’s stage of disease (92%). Most reported their loved one’s dementia was not curable (81%). Caregiver reports of knowledge of dementia type, stage, and curability of dementia did not differ between cohorts. Despite most stating dementia was not curable, only 42.2% of the combined sample reported that dementia is a terminal disease. Caregiver reports of dementia as a terminal disease differed between cohorts (39% in 2012 vs 52% in 2018, P = .015). The majority (58.5% of overall sample) felt they were knowledgeable about future challenges that would occur in PwD. Caregiver reports of knowledge about future challenges did not differ significantly between cohorts (54% in 2012 vs 70% in 2018, P = .25).

Table 2.

Caregiver Disease Understanding.

Cohort 1 (2012),
N = 114		 Cohort 2 (2018),
N = 40		 Total Sample
(Pooled Data)		 P a
Variable n (%) n (%) n (%)
Caregiver-reported knowledge about patient’s disease and prognosis
Dementia type
 Mild cognitive impairment 34 (29.8) 7 (17.5) 41 (26.6) .15
 Dementia 37 (32.4) 16 (40.0) 53 (34.4) .44
 Alzheimer disease 35 (30.7) 19 (47.5) 54 (35.0) .08
 Vascular dementia 4 (3.5) 3 (7.5) 7 (0.4) .38
 Lewy body dementia 11 (9.6) 2 (5.0) 13 (0.8) .52
 Frontotemporal dementia 5 (4.3) 1 (2.5) 6 (0.4) >.99
 Old age 5 (4.3) 0 (0.0) 5 (0.3) .33
 Other 15 (13.1) 0 (0.0) 15 (0.9) .01
 Don’t know 4 (3.5) 2 (5.0) 6 (0.4) .65
Stage of dementia .94
 Early 46 (41.0) 15 (37.50) 61 (40.1)
 Middle 35 (31.3) 15 (37.5) 50 (32.9)
 Advanced 22 (19.6) 7 (17.5) 29 (19.1)
 Don’t know 9 (8.04) 3 (7.5) 12 (0.7)
Dementia is curable .32
 Yes 3 (2.65) 0 (0.0) 3 (0.2)
 No 88 (77.9) 36 (90.0) 124 (81.0)
 Don’t know 22 (19.5) 4 (10.0) 26 (17.0)
Dementia is terminal
 Yes 44 (38.6) 21 (52.5) 65 (42.2) .015
 No 37 (32.46) 16 (40.0) 53 (34.4)
 Don’t know 33 (28.9) 3 (7.5) 36 (23.3)
Knowledgeable about cause of dementia .25
 Yes 58 (54.21) 28 (70.0) 86 (58.0)
 No 14 (13.1) 4 (10.0) 18 (12.2)
 Neutral 58 (54.2) 8 (20.0) 86 (58.5)
Knowledgeable about future challenges .38
 Yes 58 (54.0) 28 (70.0) 86 (58.5)
 No 35 (32.7) 8 (20.0) 43 (29.0)
 Neutral 14 (13.1) 4 (10.0) 18 (12.2)
Doctor talked with you/PwD about life expectancy/prognosis .027
 Yes 28 (25.0) 18 (45.0) 46 (30.2)
 No 84 (75.0) 22 (55.0) 106 (69.7)
Estimated life expectancy/prognosis, years .36
 >10 15 (13.4) 5 (12.5) 20 (13.2)
 5-10 31 (27.7) 8 (20.0) 39 (25.7)
 3-5 11 (9.8) 5 (12.5) 16 (10.5)
 0-2 6 (5.4) 6 (15.0) 12 (7.9)
 Don’t know 49 (43.8) 16 (40.0) 65 (42.8)
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a

Cohort 1 versus cohort 2.

Prognostic Understanding and Discussions

Only about 30.2% of the combined sample of caregivers reported that the PwD’s primary care provider had talked to them about prognosis (Table 2). Furthermore, 42.8% of the combined sample of caregivers reported they did not know the PwD’s estimated life expectancy/prognosis (Table 2). Caregiver reports of discussing prognosis with the PwD’s physician differed between cohorts (25% in 2012 vs 45% in 2018; P = .027). Caregiver reports of estimated life expectancy of their loved one did not differ significantly between the 2012 and 2018 cohorts (Table 2).

Correlates of Prognostic Understanding

Multivariate logistic models were created for the outcomes using all variables that had a P value <.10 in the univariate setting. Models varied in the included covariates, as some outcomes (such as knowledge of the disease) had multiple covariates, including college education, stage, and type of dementia, while other models had no covariates (such as “I feel knowledgeable about the causes of the patient’s memory conditions”) with significant associations. Significant associations were found between prognostic understanding and reported stage of dementia by caregivers. Caregivers who reported their loved one had advanced-stage dementia were more likely to understand that the disease is terminal and is not curable (odds ratio [OR] = 8.4, 95% confidence interval [CI], 2.3-30.2, P = .014) compared to caregivers who reported their loved one had early-stage dementia. Caregivers who reported that dementia was not curable along with was terminal occurred more frequently in those who had reported Alzheimer dementia (OR = 4.4, 95% CI, 1.8-10.4, P < .001). In addition, we found that those with Lewy body dementia (P = .029, OR = 4.4, 95% CI, 1.2-16.6) and those with frontotemporal dementia (P = .049, OR = 10.1, 95% CI, 1.01-101) were more likely to have talked to PwD’s primary care provider about prognosis.

Palliative Care Readiness, Understanding, and ACP

See Table 3 for caregiver PC readiness, knowledge, and ACP for the overall combined sample, individual cohorts, and cohort comparisons. When assessing whether caregivers wanted additional education and support for future problems either now or later that may occur in PwD (like agitation, insomnia, etc), 76.9% in 2012 and 75.0% in 2018 were interested (P = .56). Though 63.6% in 2012 and 47.5% in 2018 stated they would be interested in home-based care either now or in the future for PwD (P = .15), the majority in 2018 (76.9% vs 48.9% in 2012; P = .027) did not feel spiritual care for PwD would be useful. In addition, 81.5% in 2012 and 62.5% in 2018 of caregivers were interested either now or later in being better educated of community resources available for PwD (P = .10). Knowledge of PC did not differ by cohort (32.3% in 2012 vs 40.0% in 2018, P = .39). A large percentage (46.2% in 2012 and 57.5% in 2018; P = .75) felt they had sufficient support at home to care for PwD and were confident in their ability to manage future challenges in PwD (39.8% in 2012, 56.4% in 2018; P = .20).

Table 3.

Palliative Care Readiness, Knowledge, and Advance Care Planning.

Cohort 1 (2012),
N = 114		 Cohort 2 (2018),
N = 40		 Total Sample
(Pooled Data)		 P a
Variable n (%) n (%) n (%)
Readiness for services
 Education and support for future problems .56
  Useful now 33 (31.7) 11 (27.5) 44 (30.5)
  Useful later 47 (45.2) 19 (47.5) 66 (45.8)
  Not useful 24 (23.0) 10 (25.0) 34 (24.6)
 Interested in discussing goals of care .70
  Useful now 28 (27.2) 10 (25.0) 38 (26.5)
  Useful later 21 (30.1) 12 (30.0) 43 (30.0)
  Not useful 44 (42.7) 18 (45.0) 62 (43.3)
 Physician home visits/home-based care .15
  Useful now 15 (15.0) 7 (17.5) 22 (15.7)
  Useful later 48 (48.0) 12 (30.0) 60 (42.8)
  Not useful 36 (36.0) 21 (52.5) 16 (11.4)
 Counselors for spiritual care .027
  Useful now 16 (16.3) 2 (5.13) 18
  Useful later 34 (34.6) 7 (17.9) 41
  Not useful 48 (48.9) 30 (76.9) 78 (56.9)
 Information about community resources .10
  Useful now 28 (27.2) 9 (22.5) 37 (25.9)
  Useful later 56 (54.4) 16 (40.0) 72 (50.3)
  Not useful 19 (18.4) 15 (37.5) 34 (23.7)
Knowledge
 Knowledgeable about palliative care .39
  Yes 34 (32.3) 16 (40.0) 50 (34.4)
  No 35 (33.3) 15 (37.5) 50 (34.4)
  Neutral 36 (34.3) 9 (22.5) 45 (31.0)
 Confident in family/support system to help physically care for patient .75
  Yes 50 (46.2) 23 (57.5) 73 (49.3)
  No 31 (28.7) 10 (25.0) 41 (27.7)
  Neutral 27 (25.0) 7 (17.5) 34 (22.9)
 Confident in ability to manage future challenges .20
  Yes 43 (39.8) 22 (56.4) 65 (44.2)
  No 33 (30.5) 8 (20.5) 41 (27.9)
  Neutral 32 (29.6) 5 (12.8) 31 (21.1)
Advance care planning
 Discussion with PwD about end-of-life wishesb
  Yes b 21 (67.74) 21 (67.74)
  No b 9 (29.03) 9 (29.03)
  Don’t know b 1 (3.23) 1 (3.23)
 Patient has advance directive or living willb
  Yes b 19 (61.3) 19 (61.3)
  No b 8 (25.8) 8 (25.8)
  Don’t know b 4 (12.9) 4 (12.9)
 Goals of care and values discussion with physicianb
  Yes b 12 (38.7) 12 (38.7)
  No b 18 (58.1) 18 (58.1)
  Don’t know b 1 (3.23) 1 (3.23)
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Abbreviation: PwD, persons with dementia.

a

Cohort 1 versus cohort 2.

b

Not assessed in cohort 1.

The majority of caregivers (68%) in 2018 had talked with their loved one about ACP, with 61% stating their loved one had an advance directive (this was not assessed in the 2012 cohort). However, when asked whether the physician had ever talked to them and the PwD about ACP and their overall goals and values, only 39% of caregivers related this ever occurring. When asked if they were interested in having a goals of care discussion with the PwD’s physician, almost half of caregivers (43% in 2012 and 45% in 2018, P = .70) did not feel that would be useful.

Discussion

This study examined caregivers of PwD’s prognostic awareness, disease understanding of dementia, and PC, and evaluated whether this may be improving over time. Among caregivers of PwD, most understood that dementia was not a “curable” disease and reported having good disease understanding related to the type and stage of dementia without significant difference between cohorts; however, there was a large failure to recognize the terminal nature of dementia among many caregivers. We did find that in PwD who had advanced-stage dementia, that caregivers were more likely to understand that dementia was a terminal illness (OR = 8.4) along with in those particularly who had Alzheimer dementia (OR = 4.4) compared to other types of dementia. Thus, this highlights a need to discuss the normal clinical disease trajectory of dementia along with the terminal nature of the disease in earlier stages of dementia and especially in those with non-Alzheimer types of dementia.2,32-35 This is very important since awareness of the terminal nature of dementia correlates with a higher likelihood of receiving comfort care at the end of life.36

Although this study suggested prognostic discussions may be becoming more common between physicians and caregivers of PwD, findings suggest the need to improve prognostic discussions and awareness in caregivers of PwD, especially in certain subgroups. Over 40% of caregivers in the combined cohorts did not know their loved one’s prognosis and over 50% reported that dementia was either not terminal or did not know whether it was terminal. This suggests a major knowledge gap. Caregivers who’s loved one did not have Alzheimer or advanced-stage dementia appeared to be at elevated risk for not understanding that dementia is terminal. This highlights a potential need to discuss the terminal nature of the disease with these subgroups.2,32-35

There are multiple reasons likely for this poor prognostic awareness, including inaccurate physician prognostics skills,37 limited training in communication skills related to conveying prognosis,38-40 and caregiver misperceptions of prognosis.41 It is essential to communicate prognostic information clearly and in a way that has contextual meaning for the PwD and their caregiver. There are multiple prognostic tools available to help estimate mortality risk in PwD.42-48 When relaying prognostic information, it is important to focus on what the normal clinical course might look like and how dementia may affect their quality of life and daily functions while providing anticipatory guidance.49,50 The use of the clinical dementia rating scale or global deterioration scale can aid in this discussion.51,52 It is important to check for understanding after having prognostic discussions to assess and clarify any misunderstandings. In addition, providers can facilitate enhanced prognostic awareness among PwD and their caregivers through the use of advanced communication techniques, such as VitalTalk, Geritalk, and Serious Illness Conversational Guide.53-56

This study also shows that there continues to be a poor understanding of PC among caregivers of PwD, with less than half reporting knowledge of PC. Our findings are consistent with a recent study by Trevedi and colleagues that demonstrated that 71% of adults had limited awareness of PC within the United States.57 Thus, physicians should not make assumptions that caregivers of PwD know about nor know the benefits of PC and that misperceptions of PC likely exist. Grossman and Kaestner stated that patients and their loved ones need to be knowledgeable of health services to truly drive utilization, which is supported by prior studies showing higher rates of PC utilization in those with good literacy about PC.58-60 Therefore, patients and their caregivers cannot truly make informed medical decisions if they are not aware of all the care options available. Furthermore, often PC is mistakenly equated with hospice. The availability of PC has rapidly expanded over the years but patients and their caregivers may be unwilling to accept referrals to PC due to this knowledge gap.61-65 Thus, when discussing PC, it is important to distinguish it from end-of-life/hospice care, discuss it early and normalize PC as part of their treatment course, and to present PC as a positive service (eg, can improve quality of life). Another barrier to PC is that often physicians in addition have a poor understanding of what constitutes PC along with when patients should be considered for this service.66 Targeted educational interventions toward PwD, their caregivers, and providers are needed to improve knowledge of PC to truly increase access to this supportive service.

Our study showed that the majority of caregivers (68%) in 2018 actually reported having ACP discussions with the PwD, with 61% stating the PwD had completed an advance directive, which is higher than previous reported studies.67,68 However, when asked whether the physician had ever talked to them and the PwD about ACP and their overall goals and values, only 39% of caregivers related this ever occurring. Prior studies have shown one of the major barriers to ACP discussions is physician’s own discomfort and lack of training in communication related to ACP.69-72 Interesting enough though, almost half of caregivers were not interested in having goals of care discussions with PwD’s physician. This highlights a limited health literacy about the importance of discussing ACP with the medical team and presents a substantial barriers to communication that could lead to PwD receiving care that is not in alignment with their goals. Prior studies have shown the lack of goals of care discussions is associated with higher rates of aggressive care at the end of life and mortality in the hospital.73-76 Thus, clinicians would benefit from having ACP with PwD and their caregiver, especially early in the disease course when capacity is still intact, emphasizing the importance of discussing ACP with the medical team to promote engagement and improve documentation within the electronic health record, and checking for understanding to assess and clarify any misunderstandings.

This study did have several limitations. First, the study sample consisted largely of white, well-educated participants. Thus, the findings may not be generalizable to those with lower education or non-Caucasian race. The survey response rate was modest (55%), but we cannot exclude differential bias in response rates among caregivers with higher versus lower caregiving burden. This study occurred at a single-academic medical center, which may limit generalizability. In addition, a validated survey was not used, and future research is needed for the development of validate ways to survey caregivers of PwD related to prognostic awareness and disease understanding.

Conclusion

Dementia is a progressive neurodegenerative disease with high morbidity and mortality. This study highlights that more clinicians are having prognostic discussions, but there still appears to be poor understanding that dementia is a terminal illness and poor understanding of PC among caregivers of PwD. Additional work is needed to improve prognostic awareness and PC understanding among caregivers of PwD.

Acknowledgment

The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis).

Footnotes

Declaration of Conflicting Interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article. K.S. was a full-time faculty member at Wake Forest School of Medicine and led the development of the first survey. She is now a full-time employee of Genentech, a member of the Roche Group. Genentech had no role in the conduct of this study.

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