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. Author manuscript; available in PMC: 2023 Aug 1.
Published in final edited form as: Aging Ment Health. 2021 Jun 24;26(8):1693–1698. doi: 10.1080/13607863.2021.1937055

Self-reported sense of purpose in life and proxy-reported behavioral and psychological symptoms of dementia in the last year of life

Angelina R Sutin a, Martina Luchetti a, Yannick Stephan b, Antonio Terracciano a
PMCID: PMC8976232  NIHMSID: NIHMS1766855  PMID: 34166597

Abstract

Behavioral and psychological symptoms of dementia (BPSD) are among the most challenging aspects of dementia for individuals living with dementia and their caregivers. Identifying factors associated with resilience to BPSD may inform interventions to reduce them. The present research examines whether purpose in life is associated with BPSD in the last year of life. Participants from the Health and Retirement Study were selected if they reported on their purpose, had evidence of a memory impairment, died across the follow-up, and a proxy completed the end of life survey that included BPSD (N=2,473). Purpose in life was associated with fewer BPSD overall. Of the individual symptoms, purpose was associated with less risk of psychological symptoms but not motor or perceptual symptoms. These results are consistent with growing evidence that purpose is associated with better cognitive outcomes. Purpose may be a useful target of intervention to improve outcomes across the spectrum of dementia.

Keywords: Purpose in life, BPSD, Behavioral symptoms, End of Life, Dementia

Behavioral and psychological symptoms of dementia (BPSD) are among the most difficult aspects of dementia to manage (Kales et al., 2015). BPSD are heterogenous and occur across a number of domains, including psychological (e.g., depression, apathy) and perceptual (e.g., hallucinations) symptoms and changes in motor function (e.g., wandering), circadian rhythms (e.g., changes in sleep patterns), and/or eating behavior (e.g., loss or increase in appetite) (Cerejeira et al., 2012). Estimates vary, but meta-analyses typically indicate the prevalence of BPSD to be about 50% for the most common symptoms (Zhao et al., 2016). BPSD predict the course of dementia and increase risk of early institutionalization (Connors et al., 2018). There is thus great interest in reducing BPSD to reduce the burden of dementia on caregivers and increase quality of life for individuals living with dementia (Deardorff & Grossberg, 2019; Terracciano et al., 2020). Given the variability of BPSD and that not everyone with dementia will experience BPSD, it is critical to identify factors that may help reduce risk of symptomatology. A better understanding of factors that increase/decrease risk of such symptoms may help tailor interventions to improve outcomes.

A sense of purpose in life has emerged as a consistent correlate of cognitive health across adulthood. A sense of purpose in life is the feeling that one’s life is goal-directed and driven (Ryff, 1989). Individuals who feel more purposeful have a lower risk of Alzheimer’s disease (Boyle et al., 2010) and other cognitive impairments (Sutin, Stephan, & Terracciano, 2018). Prior to the onset of dementia, purpose is also protective against pre-dementia risk syndromes (Sutin et al., 2021) and is associated with better cognitive function (Sutin et al., 2021; Windsor et al., 2015) and less cognitive decline (Kim et al., 2019; Wilson et al., 2013). Although purpose is associated with lower risk of dementia, some individuals higher in purpose will still develop cognitive impairments. The beneficial association of purpose in life with better cognitive outcomes may extend to BPSD.

Purpose in life is conceptualized as an organizing framework that offers direction to one’s life (McKnight & Kashdan, 2009). It is theoretically thought to support better health in general through both greater goal engagement (Irving et al., 2017) and resilience to stress (Ong & Patterson, 2016). In particular, it helps to guide individuals to select proximal goals that are consistent with long-term strivings and promotes coping strategies that help buffer against stress that may impede goal striving (McKnight & Kashdan, 2009). This process may provide a cumulative advantage for health with aging (Irving et al., 2017; McKnight & Kashdan, 2009; Windsor et al., 2015). It is possible that these long-held strategies are maintained to some extent with cognitive impairment and may even become somewhat automatic. That is, individuals with a greater sense of purpose in life may maintain both their goal strivings and their regulatory capacity to attain those goals (e.g., maximize gains and minimize losses) despite cognitive impairment. And, in fact, purpose in life is associated with greater goal strivings among individuals living with dementia (Mak, 2011). The capacity to regulate goals and emotions may support health and well-being across adulthood into old age (Ryff et al., 2016). This support may continue through cognitive impairment to reduce the likelihood of experiencing BPSD.

The lived experience of people with dementia suggests that continuity is one factor that supports well-being (Robertson, 2014). One case study, for example, found that the subject of the case study actively worked to create continuity and coherence in her life story by interpreting her maintained capabilities as consistent with her sense of self and social identity. Although a struggle at times, this continuity helped support well-being and find meaning in the changes brought by dementia (Robertson, 2014). Another qualitative study indicated that individuals living with mild to moderate dementia strive to maintain important aspects of their identity despite their diminished capacity to engage with their interests prior to developing dementia (Phinney, 2011). This coherence was thought to support greater feelings of meaning (Phinney, 2011). This active psychological work to maintain continuity may extend to how individuals engage with their goals and manage stress. The result of this process may also be fewer BPSD. A quantitative study that measured meaning in life in participants living with dementia found that greater feelings of meaning (a construct related to purpose) were associated with higher well-being and fewer depressive symptoms (Dewitte et al., 2019).

The present study tests the hypothesis that a sense of purpose in life will be associated with fewer BPSD at the end of life among individuals living with a cognitive impairment. We test this association with self-report data on purpose in life and proxy-reported symptoms in the last year of life measured up to 10 years later with data from the Health and Retirement Study (HRS). The hypothesized association and analyses were pre-registered at https://osf.io/anemh/?view_only=ff1e8e8d5c904bf1b8059e362c7152f5. Note that the HRS is a large-scale study on the health and aging in the United States and these publicly available data have generated a tremendous amount of knowledge on how psychological factors contribute to aging outcomes. The present analysis builds on our work (Sutin et al., 2021; Sutin, Stephan, Luchetti, et al., 2018; Sutin, Stephan, & Terracciano, 2018) and the work of others (Kim et al., 2019) who have used the HRS to examine the relation between a sense of purpose and cognitive health. The present research extends this work on cognitive health to a relatively common experience in dementia – psychological and behavioral symptoms. There are likely other psychological factors, such as optimism or control beliefs, that may also be protective. The present research, however, focused specifically on sense of purpose because of the rapidly growing literature on its positive correlates with cognitive health earlier in adulthood.

Method

Participants and Procedure

Participants were from the Health and Retirement Study (HRS). More information about HRS and how to download the data can be found at https://hrs.isr.umich.edu. HRS is a longitudinal cohort study of the health and aging of individuals 50 years and older and their spouses. A random half of the HRS sample first completed a measure of purpose in life in the 2006 Leave Behind Questionnaire; the other half first completed it in 2008. These two assessments were combined as baseline. When an HRS participant dies, an effort is made to interview an individual close to the participant (e.g., spouse, adult child) about the health, well-being, and behavior of the participant in their last year of life; this survey included symptoms relevant to BPSD.

Participants were included in the analytic sample for this study if they had reported on their sense of purpose in either 2006 or 2008, died during the follow-up up through 2016 (the year with the most recent data available), a proxy completed an exit interview after their death, and had evidence of a memory impairment in life. Evidence of a memory impairment was defined as the presence of at least one of the following: (1) a score of <12 on the modified Telephone Interview for Cognitive Status (TICSm, see below) at any assessment between 2006 and 2016, (2) self-reported physician diagnosis of Alzheimer’s disease or dementia, or (3) proxy report of a memory impairment at the end of life. A total of 2,473 participants met these criteria; analytic samples for some analyses ranged from 2,291 to 2,465 due to missing data on individual BPSD.

There were 552 participants who reported on their purpose in life at baseline, who had evidence of a memory impairment in life, and died over the follow-up but did not have a proxy complete the exit interview. Compared to participants in the analytic sample, participants with missing data were older at baseline (d=.17, p<.001), had a higher sense of purpose (d=.18, p<.001), and were less likely to have a cognitive impairment at the baseline purpose assessment (χ2=6.412, p=.011). There were no differences in gender (χ2=.257, p=.637), race (χ2=.495, p=.482 for African American and χ2=.169, p=.681 for other race compared to white), or education (d=.01, p=.823).

Measures

Sense of purpose in life.

Sense of purpose in life was assessed with a 7-item version of the purpose subscale from the Ryff Measures of Psychological Well-being (Ryff, 1989) Participants rated items (e.g., “I have a sense of direction and purpose in my life.”) on a scale from 1 (strongly disagree) to 6 (strongly agree). Items were reverse scored when necessary and the mean taken in the direction of greater purpose in life (alpha=.71).

BPSD.

Behavioral and psychological symptoms in the last year of life were assessed in the End of Life survey that a knowledgeable proxy completed after the participant’s death. Seven items from the End of Life survey were identified as broadly measuring common BPSD (Cerejeira et al., 2012, McKhann et al., 2011). Specifically, proxies were asked, “Was there a period of at least one month during the last year of his/her life when he/she had…” Items related to BPSD were “depression,” “periodic confusion,” and “uncontrolled temper.” Proxies were also asked, “Did he/she ever…” “see or hear things that were not really there,” “get lost in a familiar environment,” “wander off alone?” Finally, proxies were asked, “In the last two years, could he/she be left alone for an hour or so?” Response options for all items were yes, no, don’t know, or refused. All items were scored as 1=yes and 0=no, except for the last item which was reverse scored to be consistent with the other items. Don’t know and refused were coded as missing. For some analyses, the sum was taken across symptoms.

Cognitive function.

Participants were administered the modified Telephone Interview for Cognitive Status (TICSm; Crimmins et al., 2011) at every HRS assessment. The total TICSm score is the sum of performance on three tasks: immediate and delayed recall of 10 words (20 points), serial 7 subtraction (5 points), and backward counting (2 points). A score of <12 was taken as evidence of a cognitive impairment (Crimmins et al., 2011; Langa et al., 2005).

Statistical Approach

Logistic regression was used to predict each individual symptom from purpose in life, controlling for age, gender, race, education, and time between the assessment of purpose and the End of Life interview. Linear regression was used to predict the sum of the seven symptoms from purpose in life, controlling for the same covariates. Across both the logistic and linear regressions, we ran two supplemental analyses. First, we included baseline cognitive impairment status as an additional covariate to test whether it accounted for the association between purpose and BPSD. Second, to address the potential impact of missing data, we used inverse probability weighting to examine whether attrition patterns had an effect on the pattern of results.

Exploratory analyses tested whether the association between sense of purpose and the sum of BPSD was moderated by any of the sociodemographic characteristics (age, gender, race, education), baseline cognitive function, or time between the assessment of purpose and the End of Life survey. No correction was made for multiple comparisons. We report the p-value to three decimal places to allow readers to make their own judgements. All analyses were done in SPSS 26. Syntax and output are available on OSF.

Results

A total of 2,473 HRS participants reported on their purpose in life in 2006/2008, had evidence of a memory impairment, and died over the follow-up. Descriptive statistics are in Table 1. Bivariate correlations are in Supplemental Table S1. Proxy respondents who reported on participants’ symptoms were primarily spouses (31.2%), adult children (53.8%), or another family member (11.9%); 3.1% were from outside the family. Across the seven symptoms, periodic confusion was the most common symptom (60.8%) and wandering off was the least common symptom (6.4%). A higher sense of purpose in life reported at baseline was associated with reduced risk of three of the seven specific symptoms in the logistic regressions (Table 2). Note that the odds ratios indicated the odds of experiencing each symptom for every point increase in sense of purpose (odds ratios below 1.00 indicated reduced odds of experiencing the symptom). To facilitate interpretation, we report the effect sizes here as Cohen’s d, in addition to the odds ratios in Table 2. Participants who reported a higher sense of purpose in life were less likely to have depression (d=.22), periodic confusion (d=.10), or uncontrolled temper (d=.12) in their last year of life, as reported by a knowledgeable proxy. Purpose was unrelated to hallucinations (d=.04), getting lost in a familiar environment (d=.06), wandering off alone (d=.04), and ability to be left alone for short periods of time (d=.08). Sense of purpose was further associated with the sum of BPSD in the linear regression (Table 2): Participants higher in purpose had fewer symptoms overall. Across the logistic and linear regressions, the pattern of results was the same in supplemental analyses that included baseline cognitive impairment as an additional covariate (Supplemental Table S2) and in analyses that used inverse probability weighting to account for the pattern of missing data (Supplemental Table S3).

Table 1.

Descriptive Statistics for All Study Variables

Variable Mean (SD) or % (n)
Baseline age (years) 76.43 (9.67)
Gender (female) 54.1% (1337)
Race (African American) 14.2% (352)
Race (Other/Unknown) 2.6% (64)
Education (years) 11.72 (3.18)
Time (years1) 6.23 (2.66)
Purpose in life 4.23 (.95)
Baseline cognitive impairment (n=2,441) 45.8% (1117)
Behavioral and Psychological Symptoms
 Depression (n=2,391) 56.1% (1341)
 Periodic confusion (n=2,458) 60.8% (1494)
 Uncontrolled temper (n=2,465) 20.1% (495)
 Hallucinations (n=2,295) 25.9% (594)
 Get lost (n=2,291) 22.8% (522)
 Wander off (n=2,327) 6.8% (158)
 Left alone (n=2,320) 18.3% (425)
Total BPSD 2.03 (1.60)
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Note. N=2,473 unless otherwise noted.

1

Years between self-reported purpose and proxy-reported symptoms.

Table 2.

Association Between Purpose in Life and Behavioral and Psychological Symptoms of Dementia

Predictor Depression
 Periodic Confusion
 Uncontrolled Temper
 Hallucinations
OR (CI) p OR (CI) p OR (CI) p OR (CI) p
Age (years) .97 (.96–.98) <.001 1.00 (.99–1.01) .706 .98 (.97–.99) <.001 1.01 (1.00–1.02) .215
Gender (female) 1.11 (.94–1.31) .235 1.40 (1.19–1.65) <.001 .89 (.73–1.09) .260 1.53 (1.26–1.85) <.001
Race (African American) .45 (.35–.58) <.001 .78 (.62–.99) .041 1.08 (.81–1.44) .584 .91 (.69–1.21) .528
Race (Other/Unknown) .84 (.50–1.44) .528 .83 (.49–1.39) .472 1.16 (.64–2.10) .614 .58 (.28–1.21) .148
Education (years) 1.01 (.98–1.04) .564 1.05 (1.02–1.08) .001 .98 (.95–1.01) .204 .96 (.94–.99) .016
Time (years) .98 (.95–1.01) .244 1.03 (1.00–1.06) .050 1.04 (1.00–1.08) .069 1.03 (1.00–1.07) .081
Purpose in life .80 (.73–.87) <.001 .89 (.82–.97) .010 .87 (.78–.97) .011 .95 (.86–1.06) .360
N 2,391 2,458 2,465 2,295
Get Lost
 Wander Off
 Left Alone
 BPSD Sum
OR (CI) p OR (CI) p OR (CI) p β p
Age (years) 1.01 (.99–1.02) .226 1.01 (.99–1.03) .470 1.01 (.99–1.02) .222 .00 .903
Gender (female) 1.10 (.90–1.35) .330 1.08 (.78–1.50) .648 1.18 (.95–1.46) .142 .06 .003
Race (African American) 1.02 (.76–1.37) .910 1.06 (.66–1.72) .811 1.31 (.97–1.77) .081 −.05 .021
Race (Other/Unknown) .66 (.31–1.43) .296 .28 (.04–2.03) .207 .85 (.39–1.84) .681 −.03 .135
Education (years) 1.01 (.98–1.04) .612 1.00 (.95–1.05) .923 .97 (.94–1.01) .973 −.01 .697
Time (years) 1.09 (1.05–1.14) <.001 1.02 (.96–1.09) .457 1.08 (1.04–1.13) <.001 .08 <.001
Purpose in life .92 (.83–1.02) .128 .95 (.80–1.14) .596 .90 (.80–1.01) .076 −.08 <.001
N 2,291 2,327 2,320 2,473
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Note. OR=odds ratio. CI=confidence interval. β=standardized beta.

There was some evidence that this association was moderated by age. Although the association was apparent across age, it was stronger among relatively younger participants than relatively older participants (βpurpose x age=.05, p=.008). The association was not moderated by the other sociodemographic characteristics, baseline cognitive status, or years between the assessment of purpose and the End of Life survey. This pattern indicated that the protective association between purpose in life and BPSD was similar across both genders, race, education, and baseline cognitive status (all interaction terms ns).

Discussion

A sense of purpose in life was associated with fewer BPSD in the last year of life among participants with evidence of a cognitive impairment in life. This association adds to the growing literature that indicates that purpose in life is associated with healthier cognitive outcomes across the spectrum of dementia: It is associated with better cognitive function (Lewis et al., 2017), maintaining subjective memory over nine years (Dewitte et al., 2020), less age-related cognitive decline (Kim et al., 2019; Wilson et al., 2013), lower risk of pre-dementia syndromes (Sutin et al., 2021), and lower risk of Alzheimer’s disease (Boyle et al., 2010) and other cognitive impairments (Sutin, Stephan, & Terracciano, 2018). The present research indicates that purpose in life maintains its protective association over the course of the clinical state of dementia in the form of fewer behavioral and psychological symptoms.

Individuals who reported a higher sense of purpose in life had fewer BPSD overall in their last year of life, as reported by a knowledgeable proxy. It should be noted that the last year of life is a specific context for individuals living with dementia and their families. Although the associations may differ if BPSD were measured at a different point, the findings supported our hypothesis and are consistent with the broader literature on purpose and cognitive-related outcomes prior to the last year of life (Kim et al., 2019; Lewis et al., 2017; Sutin, Stephan, & Terracciano, 2018). In contrast to work on clinical outcomes (Boyle et al., 2010), the association was slightly stronger among relatively younger individuals, although purpose was also protective for relatively older participants. The moderation analyses also indicated that purpose was protective regardless of most sociodemographic characteristics and baseline cognitive status, which indicates that purpose is equally protective in the most vulnerable groups.

The association between purpose in life and individual BPSD was specific to psychological symptoms and not symptoms related to perception or motor function. There are several mechanisms that may contribute to the relation between purpose and fewer psychological symptoms. First, sense of purpose is an aspect of well-being, and earlier in adulthood it is associated with better mental health, including lower risk of depression (Laird et al., 2019; Wood & Joseph, 2010). Individuals with purpose may maintain their psychological well-being even through dementia at the end of life. Second, individuals with a strong commitment to goal strivings may hold on to that mindset and continue to feel goal oriented, even with diminished cognitive capacity. And, indeed, individuals living with dementia who report a higher sense of purpose in life continue to pursue meaningful activities consistent with their motivations (Mak, 2011). These strivings may also help to buoy against risk of psychological symptoms. Third, purpose is associated with personality traits that promote effective emotion regulation, including emotional stability and conscientiousness (Anglim et al., 2020), that have also been associated with lower BPSD (Sutin, Stephan, Luchetti, et al., 2018). Purpose is likewise associated with greater resilience to stress (Irving et al., 2017; Ong & Patterson, 2016). This tendency may be maintained in dementia and protect against the development of psychological symptoms. More research is needed with longitudinal assessments to empirically test these mechanisms. In contrast, there was less evidence that purpose was associated with motor or perceptual symptoms.

There is evidence that purpose in life is malleable and can be increased through intervention (Park et al., 2019). Conducted primarily with cancer survivors, interventions designed specifically to increase purpose are effective, as are interventions that aim to change other aspects of psychological function. Given this confluence of evidence, purpose in life may be a significant target of intervention both because it may improve outcomes across the continuum, from preventing cognitive impairment to reducing BPSD at the end of life, and because it is sensitive to change. There is further evidence that purpose helps caregivers cope with the emotional and physical difficulties of caregiving (Polenick et al., 2018). Effective interventions to increase purpose may thus have the potential for wide ranging effects given that purpose in life is associated with better outcomes, both for individuals living with dementia and their families. And, in fact, reminiscence interventions have been found to enhance meaning in life and increase well-being in individuals living with dementia (Ching-Teng et al., 2020; Mackinlay & Trevitt, 2010; Wu & Koo, 2016).

Individuals living with dementia are able to adapt their condition and maintain positive psychological functioning (Wolverson et al., 2016). In particular, some personal strengths can be preserved in dementia, such as perseverance, that may help to support greater well-being after the development of the cognitive impairment (Clarke & Wolverson, 2016). And there is some evidence that feeling that one’s life is meaningful is associated with fewer depressive symptoms among individuals living with dementia (Dewitte et al., 2019). Building and maintaining a greater sense of purpose in life may help promote well-being in dementia and reduce the experience of BPSD. A greater sense of purpose may help individuals living with dementia maintain their well-being and feelings of autonomy, which may reduce some symptoms of dementia, particularly symptoms related to psychological functioning. Such a process is likely to improve quality of life for both the individual living with dementia and their family/caregivers.

The present study had several strengths, including a relatively large sample, long follow-up interval, and a multimethod approach that included observer rated BPSD in the last year of life. There were also some limitations, including a non-standard measure of BPSD and no information on the course of symptoms, only those that occurred in the last year of life. Relatedly, without multiple assessments of BPSD and without a measure of sense of purpose in the last year of life, we could not examine the reciprocal relations and how the two changed together over time. Although reverse causality could also be a concern (e.g., neurodegeneration causes both lower purpose and BPSD), the interaction between purpose and baseline cognitive function was not significant. This finding indicates that the association between purpose and BPSD was similar in participants without cognitive impairment, who would also presumably have less neurodegeneration than participants with impairment. Finally, there are a number of other positive psychological factors that could also protect against BPSD, such as optimism, faith, and social connectedness. A sense of purpose may overlap with these constructs, and there may be a core of positive psychological function that is protective rather than something specific about each of these constructs. Still, we focus on sense of purpose because of its consistent association with cognitive health (Dewitte et al., 2020; Kim et al., 2019; Sutin et al., 2021) and the evidence that it can be increased through intervention (Park et al., 2019). Despite these limitations, the present findings add to the literature on purpose and cognition to show that the protective association of purpose in life on cognitive outcomes does not stop with dementia but extends to symptomatology experienced in the last year of life.

Supplementary Material

Supplementary Material

Acknowledgements

The Health and Retirement Study is sponsored by the National Institute on Aging (NIA-U01AG009740) and conducted by the University of Michigan.

Footnotes

Disclosure of Interests

The authors report no conflict of interest.

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