Person-centered care (PCC) is a care paradigm that urges long-term care (LTC) environments to provide more individualized and home-like support for residents (Cadieux, Garcia, & Patrick, 2013). Tailoring care toward each patient has been linked to beneficial health and subjective well-being (Doyle & Rubinstein, 2014). One of the key tenets to advancing PCC practices is assessment of individuals' values and preferences (Van Haitsma et al., 2014). Discussing everyday care preferences can provide valuable information to inform PCC delivery (Doyle & Rubinstein, 2014; Whitlatch, 2013).
Although practitioners have sought to modify care environments to address the unique needs of individuals with dementia (Cadieux et al., 2013), a lack of evidence exists examining the influence of cognitive ability on older adults' care preferences for everyday living. Older individuals who are experiencing functional decline may change which preferences for LTC are more important to them (Gun, Konetzka, Magett, & Dale, 2015). However, individuals with mild-to-moderate dementia can reliably report their preferences over short periods of time (i.e., 1 week) (Feinberg & Whitlatch, 2001). Given the increased risk for dementia and benefit of altering care to be more person-centered, better evidence is needed to understand how levels of cognitive ability may impact the importance of preferences for older adults in LTC over time.
Preferences in Care and Stability Over Time
Preferences serve as an expression of how individuals would like their needs in care met (Van Haitsma et al., 2014). Nursing home (NH) residents' preferences for everyday living can help care providers direct their services in a more person-centered manner (Bangerter, Abbott, Heid, Klumpp, & Van Haitsma, 2015; Bangerter, Van Haitsma, Heid, & Abbott, 2015; Heid, Bangerter, Abbott, & Van Haitsma, 2015; Heid et al., 2014; Van Haitsma et al., 2014). However, preference-based care can be complicated, as some preferences may remain stable while others change. Findings demonstrate consistency in reported preferences over a short test–retest period; yet, different types of preferences (i.e., personal growth and leisure activities) show more variability in scores than others (Van Haitsma et al., 2014).
In addition, preferences may shift with onset of age-related decline. For example, older adults typically report a preference to age in place (Spencer, Patrick, & Steele, 2009), but this tendency may weaken as a result of perceived lower functional ability (Gun et al., 2015). Furthermore, the preference to use life-sustaining treatments may decrease due to declined functional ability (Ditto et al., 2003). Similarly, preferences for everyday living may fluctuate due to within-person factors (e.g., functional impairment, cognitive ability) (Heid et al., 2014). However, although previous literature has examined the barriers and situational factors associated with fulfillment of everyday living preferences (Bangerter et al., 2015; Heid et al., 2014), there remains a gap in understanding the impact of cognitive ability on ratings of importance of preferences.
Assessing Preferences of Older Adults with Cognitive Impairment
Research has only begun to address the issue of assessing preferences of older adults with cognitive impairment. Factors such as memory, judgment, and executive functioning of the individual come into question. Protocols to assess preferences for individuals with dementia often call on the responses of family members, despite some research indicating that proxies may not always be accurate (Heid et al., 2015; Mesman, Buchanan, Husfeldt, & Berg, 2011; Reamy, Kim, Zarit, & Whitlatch, 2011). Initial work conducted on individuals with mild-to-moderate dementia has found that their responses for preferences are reliable over the short term (i.e., 1 week) (Feinberg & Whitlatch, 2001; Whitlatch, Feinberg, & Tucke, 2005). In addition, Mesman et al. (2011) found that individuals with severe cognitive impairment were still able to convey preferences for their own care. However, Whitlatch et al. (2005) highlight the possibility that cognitive impairment may influence an individual's changing preferences and expectations for care over longer periods of time.
The current study extends prior knowledge of the impact of cognitive ability on preference ratings by examining the impact of cognitive ability on importance ratings of preferences for everyday care over 3 months. The timeframe of 3 months was chosen due to its clinical relevance in NHs; Minimum Dataset (MDS) 3.0 assessments and care planning occur on a quarterly basis. Change over 3 months in preference ratings indicates the need to re-assess preferences to maintain accurate care plans.
Participants were stratified according to their level of cognitive ability on the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975) in line with prior research (Tombaugh & McIntyre, 1992): none-to-low cognitive impairment (score = 26 to 30), mild cognitive impairment (score = 21 to 25), and moderate cognitive impairment (score = 13 to 20). It was hypothesized that participants with less cognitive impairment (i.e., none-to-low and mild) would report significantly higher levels of importance for everyday living preferences on average compared to individuals with moderate cognitive impairment. It was also hypothesized that individuals with moderate cognitive impairment would change their reported importance for everyday living preferences significantly more from baseline (T1) to 3 months (T2) compared to those who had none-to-low or mild cognitive impairment.
In total, 581 individuals were recruited from NHs in a northeastern metropolitan region of the United States. Individuals met inclusion criteria if they had a MMSE score ≥13, were English-speaking, would enjoy participating in an interview about their likes and dislikes, had a length of stay of at least 1 week, were deemed medically stable, and provided consent or assent through a family proxy. Of 581 individuals, 255 completed the study, with 26% (n = 65) having a diagnosis of dementia. Reasons for non-completion were medical instability (n = 6), declined participation in the interview (n = 274), discharge (n = 10), family withdrawal (n = 1), health concerns (n = 2), death (n = 24), being deemed medically unstable at T2 (n = 7), or not maintaining an MMSE score ≥13 at T2 (n = 2). Attrition rate from T1 to T2 was 25% (N = 342 to N = 255). Participants who completed T1 and T2 were not significantly different than those who only completed T1 regarding age, race, years of education, or length of stay.
Participants completed an iterative consenting process approved by the study site's Human Subjects Institutional Review Board. If a participant was deemed unable to continue the consent process, a family proxy was asked to consent on his/her behalf. Only one participant provided assent by proxy. After consent/assent, the MMSE was administered to confirm participant eligibility (i.e., score ≥13). The importance ratings of individuals' everyday living preferences were then assessed with the Preferences for Everyday Living Inventory, Nursing Home version (PELI-NH; Van Haitsma et al., 2012). This procedure was then repeated in a follow-up interview 3 months later. Each interview lasted approximately 1 hour and was completed with a trained research staff member (A.R.H. and others). An attending physician and/or Director of Nursing confirmed medical stability of participants at each time point. Demographic data were acquired upon completion of T2 from MDS 3.0 data collected from each NH for all participants.
Demographics. Demographic information was recorded from the most recent MDS 3.0 assessment and included age, gender, race, length of stay, marital status, and years of education.
Cognitive Status. The 30-point MMSE (Folstein et al., 1975), well-known for its reliability and validity (Tombaugh & McIntyre, 1992), was used to assess orientation, short- and long-term memory, attention, recall, the ability to follow verbal and written commands, and writing capabilities. All necessary permissions were acquired to use the MMSE. Participants were categorized into three groups based on their T1 MMSE score: none-to-low cognitive impairment (score = 26 to 30; n = 131), mild cognitive impairment (score = 21 to 25; n = 83), and moderate cognitive impairment (score = 13 to 20; n = 41) (Tombaugh & McIntyre, 1992).
Importance of Everyday Living Preferences. The refined 72-item PELI-NH (Van Haitsma et al., 2012) was completed by participants at T1 and T2. The PELI was first developed for use with community-dwelling older adults and modified through rigorous cognitive interviewing procedures to confirm question relevance for the NH setting (Van Haitsma et al., 2012). PELI-NH questions cover a variety of everyday topics in five domains: social contact, leisure and diversionary activities, growth activities, self-dominion, and enlisting others in care (Carpenter, Van Haitsma, Ruckdeschel, & Lawton, 2000). Respondents were asked to rate each item on a 4-point Likert scale where 1 = very important and 4 = not important at all. Ratings were reverse coded to ease the interpretation of findings. Mean scores ranged from 1.53 (SD = 0.87) for ratings of importance of drinking alcohol on occasion to 3.81 (SD = 0.54) for ratings of importance of staff showing respect.
Analyses of variance (ANOVA) with Bonferroni post-hoc tests were used to examine group differences on continuous demographic variables (i.e., age, length of stay, and years of education). Differences between cognitive groups on education were tested because prior work has shown an association between education and cognitive testing scores (Crum, Anthony, Bassett, & Folstein, 1993). Chi-square tests of independence were performed to identify differences between categorical demographic variables (i.e., gender, race, and marital status). Significant differences were accounted for in analyses that followed.
To examine between-group differences of cognitive status on individuals' preference importance ratings (Hypothesis 1) and identify significant differences of change over 3 months in importance of preference ratings by cognitive group (Hypothesis 2), repeated measures analyses of covariance (ANCOVAs) were used. When cognitive groups had significant between-group differences on demographic variables and the assumptions needed to include covariates in the analyses were satisfied (e.g., significant correlation between demographic and dependent variable, homogeneity of regression slopes), the covariate(s) was/were controlled for. The current authors controlled for continuous demographic variables in the repeated measures ANCOVAs, but only if the statistical assumptions were met. Each PELI-NH item was tested as an independent outcome variable in accordance with past work (Van Haitsma et al., 2014), as these items do not load as empirical scales. Bonferroni adjusted post-hoc tests were interpreted to account for the high number of statistical tests completed (p < 0.001).
Demographic characteristics of participants by cognitive group are presented in Table 1. One-way ANOVAs revealed significant differences between groups for years of education (p = 0.008) and length of stay (p = 0.012). Bonferroni-post hoc analyses indicated that the none-to-low cognitive impairment group had significantly more years of education than the moderately cognitive impaired group, and the none-to-low cognitive impairment group reported significantly fewer days spent in the NH than the moderately cognitive impaired group. Years of education and length of stay were used as covariates.
Sample Demographic Characteristics (N = 255)
No significant differences were found in the importance of preferences for everyday living across the three cognitive groups at the p < 0.001 level. Furthermore, analyses revealed no significant time effects or group × time interactions at the p < 0.001 level (Table 2).
Repeated Measures ANCOVA Results Examining the Impact of Cognitive Ability on Importance Ratings for Preferences for Everyday Living Over Time (N= 255)
The current study investigated the differential importance of preferences for everyday living for older adults residing in a NH with varying levels of cognitive functioning and the stability of recorded preferences over 3 months. Results indicate that individuals with varying levels of cognitive ability do not differ significantly in their reported importance of preferences for everyday living. Overall stability for ratings of importance of everyday living preferences was found, regardless of cognitive group. Results carry implications for research and practice.
Regarding Hypothesis 1, no significant differences were found in importance ratings across cognitive groups. Older adults with mild-to-moderate cognitive ability can participate in discussions about their care and reliably report their preferences (Feinberg & Whitlatch, 2001). Knowing this, the current study's findings may be indicative of the importance that older adults with or without cognitive impairment place on their everyday living preferences (Bangerter et al., 2015). Researchers and health practitioners should assess older individuals' (even those with moderate cognitive impairment) preferences to determine differential importance levels for each domain on the PELI-NH (Heid et al., 2014) to inform care and policy. Future research should focus on the development of methods that use preference importance ratings to drive more effective care.
In terms of the stability of the importance of everyday living preferences, no significant differences were found between groups over 3 months. Prior work indicated that cognitive ability could impact an individual's preferences and expectations for care (Whitlatch et al., 2005), yet this was not found in the current study. Similar to 1-week test–retest studies on preference importance (Feinberg & Whitlatch, 2001), stability over 3 months may indicate that cognitive ability does not influence change in importance ratings. Such a finding supports the notion that, wherever possible, individuals with cognitive impairment should be given the opportunity to express their preferences and take more control of their social situations, whether through engagement in social learning groups or individual pursuits of learning (Scholl & Sabat, 2008). Prior work has shown that individuals with dementia may have difficulty conjuring words during support groups, yet they still have the capacity to remain as active participants (Scholl & Sabat, 2008). Future work should explore ways to keep individuals with cognitive impairment engaged in preference assessments and individualized care planning over time, as their preferences are likely to remain stable for at least 3 months.
Although this work is strengthened by its use of a large clinical sample of older adults residing in NHs, it is not without limitations. First, the generalizability of findings is limited because referred participants may not be similar to residents at other NHs in the United States. Second, the current study focused on cognitive ability, but other variables (e.g., environmental factors, fatigue) may exist that were not measured that may have affected preference importance ratings. It is possible that supplementation of qualitative data could provide insight into these additional factors (Heid et al., 2014). Third, the cognitive ability subgroups (i.e., none-to-low, mild, and moderate cognitive impairment) were unequal and may have limited the ability to detect group differences. Lastly, due to limited change in MMSE scores across 3 months, the impact of change in cognitive ability on change in importance ratings over time could not be examined. Longitudinal studies that continuously record individuals' preferences and changing cognitive ability are recommended to further understand the factors that could change one's preferences.
Assessment of everyday care preferences is valuable for the implementation of PCC (Van Haitsma et al., 2012; Whitlatch, 2013). Allowing older adults to express their preferences is empowering and can result in positive mental health outcomes (Doyle & Rubinstein, 2014; Van Haitsma et al., 2014; Whitlatch, 2013). The current findings show that individuals with and without cognitive impairment place relatively high importance on everyday living preferences and these reports are stable across 3 months. Individuals with moderate cognitive impairment can report what preferences are important to them, similar to those with none-to-low and mild cognitive impairment. Additional work should experimentally test the effects of personalized care practices with preference assessment compared to other traditional modes of care for individuals with cognitive impairment and healthy older adults.
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Sample Demographic Characteristics (N = 255)
|Variable||n (%)||F/X2 (df)|
|Total||None-to-Low CI (n = 131)||Mild CI (n = 83)||Moderate CI (n = 41)|
|Gender (female)||173 (67.8)||91 (69.5)||53 (63.9)||29 (70.7)||0.92 (2,255)|
| Caucasian or other||197 (77.3)||101 (77.1)||65 (78.3)||31 (75.6)|
| African American||58 (22.7)||30 (22.9)||18 (21.7)||10 (24.4)|
|Marital status||0.14 (2,252)|
| Not married||208 (81.6)||107 (81.7)||68 (81.9)||33 (80.5)|
|Age (years)||81.0 (11.2)||80.1 (11.4)||81.5 (11.3)||82.9 (10.6)||1.06 (2,252)|
|Length of stay (days)||890.5 (795.9)||782.2 (678.8)||912.6 (907.3)||1,213.63 (843.1)||4.49 (2,246)*|
|MMSE score (0 to 30)||24.6 (3.9)||27.55 (1.34)||23.25 (1.44)||17.59 (2.21)||—|
|Education (years)||13.7 (2.0)||14.1 (2.2)||13.6 (1.9)||12.9 (1.1)||4.88 (2,224)**|
Repeated Measures ANCOVA Results Examining the Impact of Cognitive Ability on Importance Ratings for Preferences for Everyday Living Over Time (N= 255)
|Preference: How important is it to you to...||Group Effect||Time Effect||Group × Time Effect|
|MS (df)||F||MS (df)||F||MS (df)||F|
| choose when to get up in the morning?||1.57 (251)||1.47||0.08 (251)||0.16||0.14 (251)||0.28|
| follow a routine when you wake up in the morning?a||0.24 (244)||0.27||0.06 (244)||0.11||0.88 (244)||1.81|
| take care of your personal belongings?||1.21 (252)||2.50||0.22 (252)||1.07||0.20 (252)||0.94|
| choose between a tub bath, shower, bed bath, or sponge bath?||3.02 (251)||3.50*||0.00 (251)||0.01||0.49 (251)||1.31|
| choose how often to bathe?||0.03 (250)||0.05||0.01 (250)||0.04||0.15 (250)||0.52|
| choose what time of day to bathe?||0.39 (251)||0.34||0.16 (251)||0.34||0.65 (251)||1.41|
| choose what clothes to wear?||0.12 (252)||0.11||1.34 (252)||3.77||0.13 (252)||0.35|
| take a nap when you wish?||3.73 (251)||2.34||2.63 (251)||3.91*||0.14 (251)||0.21|
| choose what to eat?||2.59 (251)||3.16*||1.83 (251)||4.73*||0.26 (251)||0.68|
| choose when to eat?||0.36 (251)||0.31||1.28 (251)||2.28||1.06 (251)||1.89|
| choose where to eat?||0.95 (250)||0.72||0.23 (250)||0.45||0.10 (250)||0.20|
| choose your own bedtime?||2.31 (252)||2.67||0.53 (252)||1.19||0.26 (252)||0.60|
| follow a routine when you go to bed?||1.53 (252)||1.38||0.12 (252)||0.26||0.81 (252)||1.70|
| choose how to care for your mouth?||1.74 (250)||3.16*||0.06 (250)||0.26||0.07 (250)||0.29|
| choose how often to care for your nails?||1.31 (252)||1.31||3.44 (252)||8.75**||0.55 (252)||1.40|
| lock things up to keep them safe?||2.90 (251)||1.64||0.00 (251)||0.00||1.06 (251)||2.67|
| have privacy?||0.30 (251)||0.31||0.00 (251)||0.00||0.15 (251)||0.51|
| keep your room at a certain temperature?||0.02 (251)||0.03||0.04 (251)||0.14||1.34 (251)||4.99**|
| do what helps you feel better when you are upset?||0.81 (242)||1.33||0.01 (242)||0.02||0.15 (242)||0.45|
| set up your bed for comfort?||1.30 (249)||2.11||0.06 (249)||0.17||0.39 (249)||1.06|
| be involved in choosing your roommate?||0.70 (171)||0.46||0.16 (171)||0.29||0.05 (171)||0.08|
| have your daily caregiver know your bathroom needs?||0.46 (249)||0.43||1.10 (249)||2.56||0.86 (249)||2.01|
| choose how to care for your hair?||0.94 (250)||1.16||0.30 (250)||0.85||0.00 (250)||0.00|
| set up your room the way you want?||0.03 (252)||0.03||0.04 (252)||0.11||0.12 (252)||0.28|
| adjust the lighting in your room?||2.46 (252)||3.18*||0.18 (252)||0.38||0.30 (252)||0.63|
| choose what name you would like to be called?a||0.28 (244)||0.21||0.19 (244)||0.40||0.26 (244)||0.55|
| order take-out food?||1.11 (250)||0.56||0.10 (250)||0.19||0.13 (250)||0.27|
|Enlisting Others in Care Preferences|
| choose who is involved in discussions about your care?||0.96 (251)||1.70||0.21 (251)||0.64||0.56 (251)||1.71|
| choose your medical care professional?||2.08 (252)||3.59*||0.09 (252)||0.28||0.02 (252)||0.08|
| talk to a mental health professional if you are sad or worried?||3.37 (251)||1.65||1.57 (251)||2.80||1.09 (251)||1.94|
| choose whether your daily caregiver is male or female?||0.87 (250)||0.40||0.74 (250)||1.26||0.74 (250)||1.26|
|Leisure and Diversionary Activities|
| drink alcohol on occasion?||0.63 (250)||0.50||1.03 (250)||2.88||1.70 (250)||4.73*|
| watch or listen to TV?||0.94 (249)||0.98||0.28 (249)||0.91||0.05 (249)||0.15|
| take care of the place you live?||2.71 (250)||3.94*||0.11 (250)||0.33||0.42 (250)||1.32|
| play games?b||0.05 (221)||0.30||0.80 (221)||1.64||0.54 (221)||1.11|
| go shopping?b||0.48 (222)||0.28||0.01 (222)||0.02||0.91 (222)||1.69|
| have snacks available between meals?||2.03 (252)||1.14||0.73 (252)||1.54||0.51 (252)||1.08|
| eat at restaurants?||1.67 (252)||0.91||1.30 (252)||2.18||0.47 (252)||0.78|
| watch movies with others?||3.66 (249)||2.34||1.02 (249)||2.00||1.48 (249)||2.89|
| do outdoor tasks?b||0.40 (219)||0.23||0.06 (219)||0.10||0.15 (219)||0.26|
| use tobacco products?||0.01 (10)||0.02||0.35 (10)||0.73||0.68 (10)||1.42|
| have staff show they care about you?||0.85 (247)||1.67||0.20 (247)||0.76||0.36 (247)||1.36|
| have staff show you respect?||1.70 (251)||4.36*||0.99 (251)||4.11*||0.26 (251)||1.09|
| spend time one-on-one with someone?||0.27 (252)||0.31||0.10 (252)||0.21||0.12 (252)||0.24|
| have regular contact with family?||3.10 (247)||3.12*||0.02 (247)||0.15||0.03 (247)||0.20|
| have regular contact with friends?||1.25 (252)||1.44||0.01 (252)||0.01||0.21 (252)||0.59|
| do things with groups of people?||0.63 (252)||0.43||0.17 (252)||0.30||0.07 (252)||0.12|
| give gifts?||0.34 (250)||0.29||0.14 (250)||0.27||0.37 (250)||0.74|
| meet new people?||0.69 (252)||0.51||0.47 (252)||1.35||0.05 (252)||0.16|
| be around children?||0.80 (252)||0.54||0.33 (252)||0.73||0.22 (252)||0.47|
| spend time by yourself?||2.69 (252)||2.46||1.15 (252)||2.57||0.51 (252)||1.13|
| be a member of a club?||0.26 (251)||0.16||0.25 (251)||0.40||0.10 (251)||0.16|
| be able to use the phone in private?||0.34 (250)||0.23||0.54 (250)||1.18||0.60 (250)||1.31|
| volunteer your time?||1.27 (251)||0.84||0.30 (251)||0.61||0.30 (251)||0.62|
| go outside when the weather is good?b||1.26 (221)||1.01||0.00 (221)||0.00||0.48 (221)||1.46|
| do your favorite hobbies?||0.80 (241)||1.02||1.56 (241)||3.62||1.27 (241)||2.94|
| attend entertainment events?||0.24 (250)||0.20||0.30 (250)||0.58||0.71 (250)||1.35|
| do your favorite activities?||0.29 (245)||0.35||0.00 (245)||0.00||0.03 (245)||0.08|
| learn about topics that interest you?||1.76 (250)||2.13||0.88 (250)||3.22||1.11 (250)||4.04*|
| have reading materials available to you?b||5.67 (219)||5.11**||1.10 (219)||3.27||0.20 (219)||0.61|
| keep up with the news?||0.63 (250)||0.73||0.00 (250)||0.00||0.10 (250)||0.36|
| reminisce about the past?||6.11 (251)||4.99**||0.04 (251)||0.08||0.46 (251)||0.95|
| use the computer?b||4.05 (218)||1.79||0.01 (218)||0.02||0.03 (218)||0.10|
| do things away from here?||0.61 (251)||0.44||0.60 (251)||0.96||1.09 (251)||1.76|
| listen to music you like?||0.73 (250)||0.85||0.00 (250)||0.01||0.08 (250)||0.30|
| participate in religious services or practices?||0.59 (250)||0.36||0.13 (250)||0.32||0.68 (250)||1.72|
| play sports?||1.21 (250)||0.58||0.26 (250)||0.61||0.78 (250)||1.87|
| exercise?||1.84 (250)||1.35||1.39 (250)||3.48||0.64 (250)||1.61|
| take care of plants?||0.47 (248)||0.20||1.39 (248)||2.86||1.05 (248)||2.16|
| participate in your cultural traditions?||0.13 (251)||0.08||0.19 (251)||0.32||0.79 (251)||1.35|
| be around animals?||3.07 (250)||1.27||1.08 (250)||2.96||0.64 (250)||1.75|
| be involved in cooking?||0.03 (249)||0.01||0.03 (249)||0.05||1.01 (249)||2.07|