Influence of hope,social support,and self-esteem in early stage dementia

Abstract

Background

People in the early stages of dementia adjust to the illness through stages of awareness, coping, and evaluation. Studies have found that hope, social support, and self-esteem facilitate coping, adjustment, and adaptation in chronic illness.

Objective

The purpose of this descriptive study was to examine the relationships between hope, social support, and self-esteem in individuals with early stage dementia.

Methods

Data were obtained from 53 individuals with early stage dementia. The scores on the Herth Hope Index, Social Support Questionnaire Short-Form, and the State Self-Esteem Scale were analyzed using linear regression.

Results

Hope was moderately associated with self-esteem (r = .49, p < .001). Hope accounted for 25% of the variance in self-esteem and was a key component in predicting self-esteem. No significant relationship was found between social support and self-esteem.

Conclusion

Findings suggest that hope may be an important factor to help individuals manage potential threats to self-esteem in the experience of early stage dementia. Strategies to inspire hope and then enhance self-esteem are promising for individuals living with early stage dementia.

Keywords

dementia hope self-concept social support coping

Early stage dementia is a highly personal experience for individuals with this chronic illness. There is growing recognition that the diagnosis results in a wide range of feelings related to their disease such as loss and uncertainty, placing major demands on their coping strategies (Martin, Turner, Wallace, & Choudhry, 2012; Steeman, Tournoy, Grypdonck, Godderis, & DeCasterle, 2013). Individuals living with early stage dementia also retain important strengths and have positive experiences (Karlsson, Savenstedt, Axelsson, & Zingmark, 2014; Wolverson, Clarke, & Moniz-Cook, 2016). They acknowledge and actively seek to understand and adjust to current and future loss of memory, independence, previous roles and lifestyle, as well as feelings of depression and frustration (Caddell & Clare, 2011; Clare et al., 2013; Lee et al., 2016). They cope by “holding on” and “compensating,” in keeping with Lazarus and Folkman’s (1984) theoretical framework; however, they also experience a continuum of reactions and emotional responses ranging from self-adjusting, in which self-concept is flexibly adapted to the new circumstances, to self-maintaining, in which the prior self-concept is emphasized (Clare et al., 2013).

Evidence suggests that the ability to experience a coherent sense of self or self-concept remains stable in the early stages of dementia (Caddell & Clare, 2011; Clare et al., 2013) and is a predictor of quality of life (Clare et al., 2013; Woods et al., 2014). While self-concept is a stable understanding of self, self-esteem is an evaluative component (e.g. perceived self-worth) and a resource that a person can draw on to avoid or to cope with the negative effects of stressors on one’s health (Garaigordobil, Perez, & Mozaz, 2008). Self-esteem is a global perception of an individual’s evaluation of themselves as a person. Low self-esteem is a risk factor for depressive symptoms across the adult lifespan (Orth, Robins, Trzesniewski, Maes, & Schmitt, 2009). Since clinically significant depressive symptoms are common, self-esteem has an important role in developing positive coping strategies in early stage dementia (Cheston, Christopher, & Ismail, 2015; Lee et al., 2016).

In early stage dementia, hope is an active process that is integral to living and important to maintain well-being and quality of life (Wolverson, Clarke, & Moniz-Cook, 2010). Hope is central to the adjustment process when trying to maintain a sense of normalcy and developing cognitive, social, and behavioral strategies to improve confidence (Karlsson et al., 2014; Wolverson et al., 2010). People in the early stages of dementia utilize intrapersonal strategies to enable them to continue to live in the present and find new ways of being in the world (Wolverson et al., 2010). Despite the scarcity of studies regarding hope in early stage dementia, high levels of hope have been associated with lower psychological distress and adaptation in other chronic illnesses such as cancer (Berendes et al., 2010; Rustoen, Cooper, & Miaskowski, 2011). Hope may serve as a protective factor that allows a person with dementia in the early stages to function effectively in spite of the disabling effects of dementia. Hopelessness is a strong predictor of adverse health outcomes in heart disease and cancer, independent of depression and other risk factors (Barefoot et al., 2000; Watson, Haviland, Greer, Davidson, & Bliss, 1999).

Numerous studies have demonstrated a significant association between social support and protection from depression in older adults (Gariepy, Honkaniemi, & Quesnel-Vallee, 2016). Social support group interventions for people in the early stages of dementia increase self-esteem, reduce depression, and improve quality of life (Burgener, Yang, Gilbert, & Marsh-Yant, 2008; Logsdon et al., 2010). Social support has been closely linked with hope in cancer (Crothers, Tomter, & Garske, 2006) and depression (Grav, Hellzèn, Romild, & Stordal, 2012). Yet it remains unclear how factors such as hope or social support might influence self-esteem in persons with early stage dementia.

The purpose of this study was to examine the relationships of hope and social support to self-esteem in individuals with early stage dementia. Our specific hypotheses were as follows: (1) there will be a positive relationship between hope and self-esteem, (2) there will be a positive relationship between social support and self-esteem, and (3) there will be an interaction effect of hope and social support on self-esteem.

Method

Design

A cross-sectional, correlational design was used to examine the relationships of hope and social support on self-esteem in individuals with early stage dementia. Prior to analysis, data were assessed to meet the assumptions of linear regression. The level of significance for all tests was set at alpha .05.

Study setting

Potential participants were referred by physicians and nurse practitioners from two neurology practices, two continuing care retirement communities, and from the coordinator of an Alzheimer’s Association early stage dual support group.

Sample

To determine the appropriate sample size for study purposes, a power of 0.80 and an alpha level of 0.01 were used in the power analysis. A power analysis was calculated to determine the sample size necessary to provide adequate power to detect a difference of −0.40 between the null hypothesis correlation of 0 and the alternative hypothesis correlation of 0.40 using a two-sided hypothesis test. This was based on a study showing a significant relationship between social support and self-esteem (r (40) = .43, p < .01) (Foote, Piazza, Holcombe, Paul, & Daffin, 1990). Fifty-seven potential participants were referred for entry into the study; three (5.2%) were ineligible due to the severity of their dementia; one (1.7%) had Mild Cognitive Impairment; and one (1.7%) declined to participate. Fifty-three individuals were eligible to participate in the study based on the following inclusion criteria: (1) a diagnosis of dementia based on Diagnostic and Statistical Manual-IV-TR criteria including alert; deficits in at least two cognitive domains that interfere with daily functioning for at least one year, and memory impairment and deficits in one or more other cognitive domains (American Psychiatric Association, 2000); (2) a Mini-Mental State Exam (MMSE) (Folstein, Folstein, & McHugh, 1975) score of ≥19 (Reisberg et al., 2011); (3) able to read and speak English; and (4) able to complete study measures.

Measures

Hope was measured using the Herth Hope Index ([HHI]; Herth, 1991, 1992). The HHI is a 12-item scale that measures three dimensions of hope, including temporality and future, positive readiness and expectancy, and interconnectedness. Summed scores can range from 12 to 48, with higher scores indicating higher hope. The HHI is a reliable and valid measure in dementia patients (Hunsaker, Terhorst, Gentry, & Lingler, 2014). In this study, the HHI internal consistency alpha was r = .71, indicating reliability.

Social support was measured using the Social Support Questionnaire Short-Form ((SSQR), Sarason, Sarason, Shearin, & Pierce, 1987). The 12-item SSQSR (Sarason et al., 1987) consists of two subscales: network size (SSQR-N) and overall satisfaction with the support received (SSQR-S). The six satisfaction items are responded to on a 6-point Likert scale, ranging from very dissatisfied to very satisfied. Sarason et al. (1987) found internal consistency alphas of .97 for the SSQR-N and .96 for the SSQR-S. The SSQR-N and SSQR-S subscales have internal consistency alphas of .83 and .60, respectively, in the current study.

Self-esteem was measured using the State Self-Esteem Scale ((SSES); Heatherton & Polivy, 1991). The 20-item SSES (Heatherton & Polivy, 1991) assesses fluctuations in different aspects of self-concept including self-feelings or state levels of self-esteem in three domains: performance self-esteem, social self-esteem, and appearance self-esteem. The sum score of the scale (ranging from 20 to 100) reflects the respondents’ perceived degree of self-esteem, with higher scores indicating higher self-esteem. The SSES has high internal consistency (α=.92) for the total score (Heatherton & Polivy, 1991). The SSES has been used in studies with older adults (Chang & Mackenzie, 1998; Maxfield, Solomon, Pyszczynski, & Greenberg, 2010), but has not been validated in an early stage dementia population. The Cronbach’s alpha for the SSES in this study was .86.

Demographics questionnaire

The demographic questionnaire included data on the following: age, gender, marital status, education, religious preference, current residence, employment/volunteer status, diagnosis of dementia, and use of support groups to analyze any history that may relate to self-esteem.

Procedures

The study received institutional review board approval. Recruitment was conducted through an Alzheimer’s Association’s early stage dual support group and with referrals from two neurology practices and two continuing care communities. Each potential participant was contacted by the study coordinator; the study was discussed over the phone or in person. When a potential participant was referred, permission was sought to talk with their family member to confirm a diagnosis of dementia. All participants in this study had been previously diagnosed with Alzheimer’s disease (AD) or another dementia and deemed to be in the early stages by a physician or nurse practitioner. Participants who met eligibility criteria and agreed to be in the study were scheduled for a 45 minute face-to-face interview with the study coordinator in their home. At that visit, the study purpose and what was expected in their participation were explained and written informed consent obtained. Although all participants had a medically confirmed diagnosis of some type of dementia, 21% were unaware or unsure of their specific dementia diagnosis.

Data analysis

Descriptive statistics, including means and standard deviations, were examined for hope, social support, self-esteem, and demographic characteristics to determine the shape of distribution. Pearson or Spearman correlation coefficients were used to examine the linear association between hope, social support, and self-esteem. Simple linear regression models were used to examine whether hope and social support were associated with self-esteem. All analyses were performed using SPSS and a p < 0.05 level was chosen for significance.

Results

Sample characteristics

The demographic and clinical characteristics of the study sample are summarized in Table 1. The sample was predominantly White (87%), female (68%), highly educated (64% college education or higher), married (51%), and identified with a Christian religion (85%). The majority of the participants reported being diagnosed with a dementia other than AD (70%) and scored in the mild range of cognitive impairment on the MMSE (M = 25.5, SD = 3.5). There were no significant relationships between the study variables (hope, social support, self-esteem) and demographic variables (age, gender, race/ethnicity, marital status, years of education, religion, residence, MMSE scores, dementia diagnosis, involvement in a support group),

Table 1.

Sample characteristics.

Characteristic	N= 53
Age, year (mean ± SD)	80.7 ± 7.8
Sex, n (%)
Female	36 (68%)
Male	17 (32%)
Ethnicity, n (%)
Caucasian	46 (87%)
Other	7 (13%)
Marital status, n (%)
Married/partnered	27 (51%)
Widowed/divorced	16 (30%)
Single	10 (19%)
Education, n (%)
Graduate/professional training	21 (40%)
Completed college	13 (24%)
<College	19 (36%)
Religion, n (%)
Christian	45 (85%)
Jewish	3 (6%)
None/atheist/unknown	5 (9%)
Residence, n (%)
House/apartment	26 (49%)
CCRC	27 (51%)
MMSE, score (mean±SD)	25.5 ± 3.5
Diagnosis, n (%)
Alzheimer’s disease	15 (28%)
Dementia	9 (17%)
Frontotemporal dementia	1 (2%)
Memory loss/cognitive impairment	13 (24%)
Seizures/multisystem atrophy	2 (4%)
Vascular dementia	2 (4%)
None/not sure	11 (21%)
Involved in support group, n (%)
Yes	10 (19%)
No	43 (81%)

MMSE: Mini-Mental State Exam.

Descriptive statistics for study variables

The mean, standard deviation, and range of scores for the hope, social support, and self-esteem scales, and the reliability of test scores are presented in Table 2. The study participants had moderately high hope scores (M = 39.34, SD = 4.17, range 31–48) and high social support satisfaction (M = 5.85, SD = 0.26, range 4.67–6).

Table 2.

Descriptive statistics for study variables (N = 53).

Scale	Mean	SD	Range	Cronbach α
Hope	39.34	4.17	31–48	0.71
Social support
Network size	3.02	1.58	0.67–8	0.83
Social support satisfaction	5.85	0.26	4.67–6	0.60
Self-esteem	79.40	9.36	56–96	0.86

Bivariate associations between hope, social support, and self-esteem

As predicted, hope was significantly correlated with self-esteem (r = 0.49, p < 0.001); however, there was no statistically significant relationship between social support network size and self-esteem (r = 0.05), and social support satisfaction and self-esteem (r = 0.18). The correlations obtained between hope, social support, and self-esteem are summarized in Table 3.

Table 3.

Bivariate correlations between measures of hope, social support, and self-esteem.

	Self-esteem r
Hope	0.49**
Network size	0.05
Social support satisfaction	0.18

r = Pearson Correlation Coefficient, **p < 0.001.

Predictors of self-esteem

As shown in Table 4, hope and social support together explained more variance in self-esteem than either variable considered independently. The overall association was statistically significant, F (2, 50) = 8.32, p = .001, and together hope and social support satisfaction accounted for 25% of the variance in self-esteem (R² = .25). However, only hope made a statistically significant, unique contribution to the estimation of self-esteem (β = .49, p < .001). There was no interaction effect between hope and social support satisfaction on self-esteem. Effect size was calculated for the overall model as well as the significant predictor hope using Cohen’s (1988) $f^{2}$ where values of 0.10 represent a small effect, 0.30 a medium effect, and 0.50 a large effect. The overall model had an effect size of 0.33 indicating a medium effect. In the absence of any other significant predictor in the model, it is evident that hope was mostly responsible for the effect size (.32) in the overall model, and entirely for the effect size of its own unique contribution.

Table 4.

Regression analysis summary for variables predicting self-esteem.

Predictor variable	B	SE	β
Hope	1.10	0.28	.49^**
Social support satisfaction	3.83	4.35	.11
Constant	13.81	27.83

Note: R² = .25, F (2, 50) = 8.32, p = .001.

p < .001.

Discussion and clinical implications

This correlational research study demonstrated that hope is moderately associated with self-esteem and may be a key component in predicting self-esteem in early stage dementia. Our study findings indicate that individuals with higher levels of hope had a greater sense of self-worth or positive feelings about themselves. Hope as a positive factor may help the individual balance the potential threats to self-esteem. This view is supported by Karlsson et al. (2014) and Wolverson et al. (2016), who found that hope was central to the adjustment process in early stage dementia.

The lack of significant findings in social support as a predictor of self-esteem is not consistent with other studies (Burgener et al., 2008; Logsdon et al., 2010). The lack of consistencies in the findings may be attributed to the low reliability score (.60) of the SSQSR-S subscale on satisfaction with social support in this sample. Consistent with previous studies of older adults, an inverse relationship emerged between small social support network size and high levels of satisfaction (Cornwell & Waite, 2009; McLaughlin et al., 2012) indicating that perceived satisfaction with social support is more important than the number of people in the network. This sample reported high levels of social support satisfaction without enough variability, which likely contributed to the lack of correlation between self-esteem. The SSQR-S may also be less sensitive to detect small differences in scores between very high and moderately high levels of social support satisfaction in this sample. Future research is needed to examine the relationships between social support and self-esteem in early stage dementia. Specifically, the inclusion of persons with early stage dementia with various levels of social support.

Although all participants had a diagnosis of some type of dementia, 21% (n = 11) were unaware or unsure of their specific dementia diagnosis. This finding supports previous research related to the ongoing cycle of awareness in the early stages of dementia and the tension to protect the self from threat and integrate the experience into the self (Caddell & Clare, 2011; Clare, 2003; Macquarrie, 2005). It is also possible that individuals with high levels of self-esteem were more confident acknowledging their dementia diagnosis (Cheston et al., 2015).

In this study, hope emerged as a primary factor most closely associated with self-esteem among individuals with early stage dementia. This finding suggests that hope is an inner resource and strength which may help a person adjust to living in the present and to influence life’s trajectory in a perceived meaningful direction (Lundman et al., 2010). It is increasingly recognized that chronic illness is experienced within an interpersonal environment, and a shared health threat that affects both patients and partners (Helgeson & Zajdel, 2017). It is plausible that the meanings of the dementia diagnosis were viewed more positively by the participants due to hopefulness from other persons that they felt strong support from (Duggleby, Williams, Wright, & Bollinger, 2009).

Limitations

There are several limitations to this study. The first is the small sample size. Although statistically significant findings were reported, additional variables might be significantly related with a larger sample size. Another limitation is that the majority of study participants were underrepresented by African-Americans, Hispanics, and other racial and ethnic minority groups (13%, n = 7). As such the findings reflect the experience of this sample and may not be representative of more diverse groups of people. Future research should include individuals from diverse backgrounds. The social support instrument (SSQR-S) used in this study had a low reliability (.60) indicating that for this sample the tool was not reliable. Additionally, there is a lack of variability in the social support scores indicating that the tool is not sensitive to detect small differences between high and moderately high social support since most of the participants scored high or moderately high in social support.

Conclusions

Despite these limitations, the results of this study provide support on the relationship between hope and self-esteem in persons with early stage dementia. Findings from this study hold promise that hope may be a key factor influencing self-esteem that serves to motivate the person with early stage dementia to maintain quality of life. With increasing awareness of dementia and its early signs, as well as advances in diagnostic technologies, a growing population of people will be diagnosed earlier. Health care providers are challenged when assessing how much of an impact the diagnosis can have on a person living with early stage dementia. Chronic illness is a shared health threat that affects both patients and partners (Helgeson & Zajdel, 2017). Future research should focus on hope as a potential protective factor in persons with early stage dementia and also their partners as both are involved in managing the illness. Growing evidence supports a person-centered approach in early stage dementia to practice together with the interpersonal environment and recognizes the importance of one’s social context and quality of life (Clare et al., 2013; Duggleby et al., 2009; Wolverson et al., 2016).

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received the following financial support for the research, authorship, and/or publication of this article: From Sigma Theta Tau International, Xi Chapter, University of Pennsylvania School of Nursing, Philadelphia, PA., USA.

Author Biographies

Valerie T Cotter is an assistant professor at Johns Hopkins School of Nursing, Baltimore, MD, USA. Her research focuses on care of older adults with early stage dementia and applying primary palliative care to improve quality of life. She worked with the Alzheimer’s Association, Delaware Valley Chapter, Philadelphia, PA to start the first specialized support group for people with early stage dementia. Cotter is a nurse practitioner at the Johns Hopkins Memory and Alzheimer’s Treatment Center, and a Sojourns Scholar, Cambia Foundation (2017–2019).

Elizabeth W Gonzalez is an associate professor emerita and former Department Chair of Doctoral Nursing Program at Drexel University, Philadelphia, PA, USA. She earned a PhD in Nursing from New York University. She was a Hartford Foundation Nurse Scholar in Geriatric Nursing Research Institute at New York University. As a certified clinical specialist in Adult Psychiatric and Mental Health Nursing her research focuses on aging populations including family caregivers for persons with Alzheimer’s disease, minority health issues, resourcefulness, and chronic stress.

Kathleen Fisher is a professor of Nursing at Drexel University, Philadelphia, PA, USA. Fisher has clinical, administrative, and research expertise in community-based programs and working with vulnerable populations. These vulnerable groups include persons with intellectual and developmental disabilities, dementias and caregivers of persons with dementia, serious mental illness, and substance abuse disorders. She has completed several funded studies including federal, state, and foundation grants. These interdisciplinary investigations have employed qualitative, mixed methods, conjoint analysis, and participatory action research.

Kathy C Richards is a research professor, University of Texas Austin. She is funded as the principal investigator on two R01 projects that focus on neurodegeneration and sleep in persons with Alzheimer’s disease. She previously served as the director of the Center for Integrative Science in Aging at University of Pennsylvania; and Alice Sun Professor, director of the Tailored Biobehavioral Interventions Center, and Associate Director of the VA Geriatric, Research, Education, and Clinical Center at the University of Arkansas Medical Sciences.

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