Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners

Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with... Abstract Purpose To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver’s care-related preferences, the person with dementia’s care-related preferences, and the caregiver’s perception of the person with dementia’s preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia’s well-being. Dementia, Caregiving, Care Planning, Preferences, Incongruence Alzheimer’s disease and related dementias are marked by progressive cognitive and physical decline. Consequently, persons with dementia typically require an increasing level of care due to a decline in ability to perform activities of daily living (Giebel et al., 2014; Giebel, Sutcliffe, & Challis, 2015), diminished cognitive function, and an increased frequency of problematic behavioral expressions of dementia (Gaugler, Davey, Pearlin, & Zarit, 2000; Gauthier et al., 2010). The majority of individuals who will take on the task of caring for persons with dementia are unpaid and untrained family members and friends (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Of the estimated 5.4 million persons living with Alzheimer’s Disease in the United States (Alzheimer’s Association, 2016), about 75% are cared for by these informal caregivers (Schulz & Martire, 2004). The relationship between a person with dementia and his/her caregiver is often characterized by interpersonal role and responsibility changes over the course of the disease (Prorok, Horgan, & Seitz, 2013). As these changes occur, persons with dementia often struggle to maintain a sense of independence and well-being within the context of the disease and their changing roles. As the disease progresses from the early stages to the moderate and advanced, caregivers frequently struggle to meet the physical and psychosocial demands of caregiving (Etters, Goodall, & Harrison, 2008). Over the course of the disease, decisions made by the caregiver regarding the provision of care for the person with dementia may fail to adequately reflect the person with dementia’s own preferences about care (Hawkins, Ditto, Danks, & Smucker, 2005). The impact of such incongruence regarding care preferences may result in or reflect maladaptive care planning, as well as negative psychosocial well-being for both the person with dementia and the caregiver, resulting in care partners who are “working separately” to cope with dementia rather than “working together” (Keady & Nolan, 2003). Care planning and decision making in dementia includes a wide range of care-related issues, from decisions related to sudden events or crises to decisions about the management and provision of daily care needs. The development of a care plan early in the course of the disease, preferably one that accommodates the values and preferences of both the caregiver and the person with dementia, is best undertaken before care needs become numerous and the cognitive abilities of the person with dementia interfere with the ability to engage in care planning and state preferences (Robinson et al., 2010). Many effective psychosocial interventions for persons with dementia utilize a “person-centered approach” focused on preserving autonomy while ensuring that persons with dementia are active, engaged, and independent as long as possible (Judge, Camp, & Orsulic-Jeras, 2000; Vernooij-Dassen, Vasse, Zuidema, Cohen-Mansfield, & Moyle, 2010). Unfortunately, these programs typically do not engage the person with dementia until the symptoms are in the moderate to advanced stages. Similarly, few interventions provide support to the caregiver early in their caregiving career. If the person with dementia’s perspective is not included early in the disease process, decisions made by the family caregiver regarding daily care and the development of a care plan may not reflect the wishes of the person with dementia (Menne & Whitlatch, 2007; Whitlatch, Feinberg, & Tucke, 2005b). Indeed, communication about future care often does not take place at all, leaving caregivers alone in the decision-making role without the knowledge of what their loved one wants. Current research on care planning in dementia focuses on advance care planning and end-of-life decision making for persons with dementia and their caregivers (Dening, Jones, & Sampson, 2011; Volandes et al., 2009; van Soest-Poortvliet et al., 2015; Poppe, Burleigh, & Banerjee, 2013). In contrast, care planning for everyday care has received less attention in the literature. This paper aims to contribute to the literature on care planning for everyday care in dementia by examining care preference-related incongruence for persons with dementia and their caregivers. We use a measure assessing the preferred provider of care (e.g., the caregiver, service providers, or friends/family) for a variety of care tasks. With this information, we examine differences in (1) actual preference incongruences (i.e., differences in caregiver and person with dementia self-reported preferences for who should help with care tasks) and (2) incongruences that are perceived by the caregiver (whether actual or not). Finally, incongruence of actual and perceived care preferences for three domains of care (i.e., socioemotional tasks, PADLs, and IADLs) is used to predict psychosocial well-being outcomes for the person with dementia and the caregiver. Preference Incongruence and Domains of Care To date, little research exists examining the psychosocial impact of care-related preference incongruence for persons with dementia and their care partners despite evidence that such discrepancies exist in both community and long-term care settings. For example, proxies reporting on behalf of persons with dementia often have limited knowledge about the care preferences of persons with dementia (Hawkins et al., 2005), and knowledge about psychosocial care preferences may be more limited when the care partner is more cognitively impaired (Carpenter, Kissel, & Lee, 2007). When there is a disagreement about care goals between care partners, adult daughter caregivers tend to reason with their parents who oftentimes yield to the preferences of the caregiver (Heid, Zarit, & Van Haitsma, 2016). Despite this literature, no studies to our knowledge have examined the link between preference incongruence and psychosocial well-being. Although discrepancies in appraisal of caregiving difficulty has been linked to greater relationship strain for the caregiver (Lyons et al., 2002), the psychosocial impact of discrepancies in preferences for care has yet to be examined. Research on care values indicates that informal caregivers consistently under-estimate the importance of the person with dementia’s values compared to the importance the person with dementia self-reports (Reamy, Kim, Zarit, & Whitlatch, 2011; Reamy, Kim, Zarit, & Whitlatch, 2013). In long-term care, for example, staff tends to perceive safety and a home-like atmosphere as most importance for residents, though residents most value autonomy and independence, including the ability to make choices, engage in activities, and make decisions about their own care (Popham & Orrell, 2012). The high importance placed on autonomy by persons with dementia is consistent with the finding that independence in ability to perform instrumental activities of daily living (IADLs) and personal activities of daily living (PADLs) is a strong contributor to quality of life for persons with dementia (Andersen, Wittrup-Jensen, Lolk, Andersen, & Kragh-Sørensen, 2004). It should be noted that these care “values” represent the importance of various aspects of care, and are therefore different from care “preferences,” which represent how the respondent would prefer for care to be provided. Nevertheless, we use the care values literature to emphasize the incongruences that often exist between the unique perspective of the caregiver and the person with dementia. Even though care-related preferences of persons with dementia remain relatively stable over time (Carpenter et al., 2007), it is important for caregivers to sustain communication with the person with dementia regarding care preferences over the changing course of the disease. Indeed, the ability to accurately report on values and preferences for everyday care remains relatively stable through the moderate stages of the disease (Clark, Tucke, & Whitlatch, 2008; Whitlatch, Feinberg, & Tucke, 2005a). Nevertheless, it is not uncommon for family members to doubt the response accuracy of persons with dementia (Woods, 1999). This discrepancy in ability and perception marks an important obstacle for ensuring that the person with dementia’s voice is heard throughout the care planning process. The perspective of persons with dementia regarding care values and preferences is shaped by their experience of the disease. In a review of 50 international articles, de Boer and colleagues (2007) identified a multifaceted illness experience marked by feelings associated with receiving a diagnosis, fear of loss of ability, and future care needs. The onset of symptoms and associated challenges place major demands on a person with dementia’s coping resources, leaving them feeling depleted and appearing more impaired than they actually are (Robinson, Clare, & Evans, 2005). Loss of autonomy, communication difficulty, cognitive and functional decline, as well as relationships with others serve as major stressors for persons with dementia (de Boer et al., 2007; Harman & Clare, 2006). The impact of dementia on family caregivers is distinctly different than the experience of the person with dementia. Caregivers often begin their caregiving role by providing help with IADLs such as shopping, making appointments, and providing transportation. As the dementia progresses, persons with dementia typically require increasingly greater levels of assistance with PADLs (e.g., bathing, dressing, and toileting) in addition to IADLs, oftentimes with no plan in place if the caregiver becomes ill or can no longer provide care. The socioemotional values and preferences of the person with dementia such as the desire to maintain autonomy and social relationships may be less salient to the caregiver, who is more focused on the person’s physical health and safety. The experience of each care partner within these social, cognitive, and physical domains may differentially influence their care-related preferences. This issue of care preference domains was raised by Carpenter, Van Haitsma, Ruckdeschel, & Lawton (2000) in a study of cognitively intact older adults. These authors suggest that there may be differences in preferences and perceived importance of preferences across a variety domains, including social contact, leisure activities, and support aids, for example. In the present study, preferences related to the provision of care tasks are organized into preferences for who will assist with PADLs, IADLs, and socioemotional tasks (see Tables 1 and 2 for a list of all items). Table 1. Percentage of Actual Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5    Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” care partners’ responses to who they would prefer to help with each task had to match exactly. View Large Table 1. Percentage of Actual Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5    Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” care partners’ responses to who they would prefer to help with each task had to match exactly. View Large Table 2. Percentage of Perceived Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2    Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” caregivers’ own preferences and the caregiver’s perception of their partner’s preferences for who they would prefer to help with each task had to match exactly. View Large Table 2. Percentage of Perceived Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2    Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” caregivers’ own preferences and the caregiver’s perception of their partner’s preferences for who they would prefer to help with each task had to match exactly. View Large Hypotheses We examined the impact of preference incongruence in domains related to physical care (PADLs) and nonphysical care (IADLs) which may foster feelings of dependence in the person with dementia, as well as socioemotional domains of care (the items corresponding to each of these domains of care are listed in Tables 1 and 2). We refer to discrepancies between the caregiver’s preferences and person with dementia’s preferences for the person with dementia’s care as actual incongruence. Thus, if a caregiver prefers to use paid help to provide transportation for the person with dementia, but the person with dementia prefers the caregiver to help with transportation, this would be an example of actual incongruence. Conversely, we refer to discrepancies between the caregiver’s own preferences and the caregiver’s perception of the person with dementia’s preferences as perceived incongruence. Thus, if the caregiver prefers to use paid help for transportation, but thinks that the person with dementia prefers a family member to help with transportation, this would be an example of a perceived incongruence. It is important to note that perceived incongruence is a reflection only of the beliefs of the caregiver and does not represent the person with dementia’s actual preferences. Given these definitions, we hypothesized that, 1a. Actual incongruence on IADL and PADL preferences will predict higher levels of dyadic relationship strain, more negative mood, and lower quality of life for the caregiver and the person with dementia. 1b. Actual incongruence on socioemotional preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for the person with dementia, but not for the caregiver. 2a. Perceived incongruence on IADL and PADL preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for both the caregiver and the person with dementia. 2b. Perceived incongruence on socioemotional preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for both the caregiver and the person with dementia. 2c. Caregivers with greater perceived incongruence on IADL, PADL, and socioemotional preferences will rate the person with dementia’s mood as more negative. It is important to underscore that socioemotional preference incongruence is hypothesized to have a different effect on the caregiver and the person with dementia. Previously, we hypothesized that actual incongruence for socioemotional preferences will negatively affect the person with dementia, but not the caregiver (H1b). Our rationale for this hypothesis is based on the psychosocial concerns reported by persons with dementia after diagnosis, such as fears about autonomy, not being a burden, and being able to maintain a social life (de Boer et al., 2007). As discussed earlier, socioemotional issues related to dementia may be less salient to caregivers, who may be focused more heavily on providing physical and instrumental care for their care partner. For perceived incongruence, we hypothesized the opposite (H2b). Since perceived incongruence is a measure of caregiver perception only, any incongruences in this respect are salient to the caregiver. Therefore, we hypothesize that we will see negative outcomes for those caregivers who believe that their own socioemotional preferences differ from those of their care partner. Methods Participants Secondary baseline data was analyzed that had been collected as part of a larger intervention study. A convenience sample of 128 dyads was included for analysis, with each dyad consisting of a person with mild-to-moderate dementia and an informal caregiver. Participants were recruited from the Northern Ohio region. Dyads met eligibility requirements if the caregiver was the primary provider of care, the person with dementia was living in the community, and the person with dementia either had a confirmed diagnosis of dementia or had symptoms of memory impairment consistent with dementia. Procedure Trained interviewers met separately with participants in their homes or other preferred locations. All self-report measures of the person with dementia were administered by a trained interviewer, whereas caregiver measures were self-administered. This methodology is consistent with research indicating that persons with early-to-moderate stage dementia are able to provide meaningful responses on a wide range of measures (Brod, Stewart, Sands, & Walton, 1999; Clark, et al., 2008; Krestar, Looman, Powers, Dawson, & Judge, 2012; Moyle, Murfield, Griffiths, & Venturato, 2012; Whitlatch et al., 2005a). Measures Demographics Sociodemographic information included age, race, gender, education level (ranging from 1 = less than high school to 6 = post-college degree), number of years providing care, coresidence, relationship to caregiver, employment status, and income (ranging from 1= Less than $10,000 annually to 11 = $100,000 or more annually). For a full account of demographic information, see Table 3. Table 3. Demographic Information   M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30    M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30  Notes: Dyad N = 128. Education (1 = less than high school, 2 = some high school, 3 = high school graduate, 4 = some college, 5 = college graduate, 6 = post-college degree). Household annual income (1 = less than $10,000, 2 = $10,000–$19,999, 3 = $20,000–$29,999, 4 = $30,000–$39,999, 5 = $40,000–$49,999, 6 = $50,000–$59,999, 7 = $60,000–$69,999, 8 = $70,000–$79,999, 9 = $80,000–$89,999, 10 = $90,000–$99,999, 11 = $100,000 or over). M = mean; MMSE = mini-mental status examination; SD = standard deviation, PWD = person with dementia. View Large Table 3. Demographic Information   M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30    M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30  Notes: Dyad N = 128. Education (1 = less than high school, 2 = some high school, 3 = high school graduate, 4 = some college, 5 = college graduate, 6 = post-college degree). Household annual income (1 = less than $10,000, 2 = $10,000–$19,999, 3 = $20,000–$29,999, 4 = $30,000–$39,999, 5 = $40,000–$49,999, 6 = $50,000–$59,999, 7 = $60,000–$69,999, 8 = $70,000–$79,999, 9 = $80,000–$89,999, 10 = $90,000–$99,999, 11 = $100,000 or over). M = mean; MMSE = mini-mental status examination; SD = standard deviation, PWD = person with dementia. View Large Dependent Variables The Quality of Life in Alzheimer’s Disease scale (Logsdon, Gibbons, McCurry, & Teri, 1999) is a gauge of overall quality of life, and includes items such as “How do you feel about your living situation?” and “How would you describe your life as a whole?” The Dementia Quality of Life scale (DQOL; Brod et al., 1999) is a measure of mood, with items such as “How often have you felt happy?” and “How often have you felt frustrated?” The relationship strain measure is a measure of positive dyadic interaction and negative dyadic strain, and contains items such as “My care partner and I treat each other as equals” and “My care partner gets on my nerves.” This measure was adapted from the Dyadic Relationship Scale (Sebern & Whitlatch, 2007; Bass, Tausig, & Noelker, 1989). Persons with dementia and caregivers completed each measure. In addition to self-reporting on each of these three measures, caregivers responded to a DQOL measure in which they were asked to rate their care partner’s mood. Dependent variable measures demonstrated good inter-item reliability using Cronbach’s alphas, with caregiver alphas ranging from .84 to .90, and alphas ranging from .85 to .92 for the person with dementia. Preferences for Care Tasks Scale The Preferences for Care Tasks Scale (PCTS; Whitlatch, 2010) is a 19-item measure assessing the preferences of the caregiver and the person with dementia. Respondents are asked to identify who they would prefer to have assist the person with dementia with various care-related tasks (e.g., Who would you prefer to help you with ____? (a) Your caregiver, (b) family/friends, (c) paid help/professional). The PCTS includes three subscales corresponding to PADL preferences (e.g., “Who would you prefer to help you with bathing or showering?”), IADL preferences (e.g., “Who would you prefer to help you with cooking or preparing meals?”), and socioemotional preferences (e.g., “Who would you prefer to help you when you need emotional support?”). For a full account of the items in the PCTS, see Tables 1 and 2. Both caregivers and persons with dementia responded to this measure, with (1) persons with dementia responding with their personal preferences for their own care, (2) caregivers responding with their own preferences for the person with dementia’s care, and (3) caregivers responding based on their perceptions of the person with dementia’s care preferences (i.e., a proxy-style response on behalf of the person with dementia). Results Scores on the Mini-Mental State Exam (MMSE; Folstein, Folstein, & McHugh, 1975) for the person with dementia ranged from 17 to 30, with an average score of 23.53. Thirty-two individuals scored more than 27 on the MMSE, but remained in the study because they had a confirmed diagnosis of dementia. Caregivers ranged in age from 39 to 87 years (mean [M] = 66.96 years, standard deviation [SD] = 11.25), with the majority being women (73%, n = 93). Persons with dementia ranged in age from 43 to 90 years (M = 72.72, SD = 8.85) and about half were women (46%, n = 59). Participants were predominantly White (caregivers, 90.6%, n = 116; persons with dementia, 89.8%, n = 115). Nine persons with dementia were African American (7%) and two were Hispanic (2%). Nine caregivers were African American (7%) and two were Hispanic (2%). The majority of caregivers were spouses (77%, n = 99) or children (16%, n = 21; see Table 3). Analytic Strategy Hierarchical regression analyses were used to test Hypotheses 1 and 2. A regression analysis was conducted for each dependent variable, totaling seven regression analyses for each hypothesis. The first step of each regression analysis included the covariates income, race, education, age, and gender of both the caregiver and the person with dementia (10 total covariates per analysis). After controlling for these factors, the independent variables of interest were entered in the second step of each analysis. Actual and perceived incongruence were calculated by counting the number of shared preferences within each of the three PCTS subscales. In order for preferences to be considered “shared” for a given item on the PCTS, the responses had to match exactly. Actual incongruence counts represented the number of nonshared preferences between the person with dementia and the caregiver. Perceived incongruence counts represented the number of nonshared preferences between the caregiver and the caregiver’s perceptions of the person with dementia’s preferences. Thus, higher scores represent a greater number of shared preferences, or congruence. To test Hypothesis 1, the number of shared preferences on each of the three subscales of the PCTS (IADL, PADL, and socioemotional preferences) were included as separate predictors in the analyses in order to examine the unique predictive ability of each subscale. The same method was used to test Hypothesis 2. Primary Analyses As shown in Table 4, results from the regression analyses for H1 indicated that actual incongruence of socioemotional preferences between the caregiver and person with dementia was related to greater relationship strain (β = −.29) and worse mood (β = .34) for the person with dementia, and the caregiver’s appraisal of the person with dementia’s mood (β = .26). However, actual incongruence was not related to the caregiver’s relationship strain, quality of life, or mood (p’s > .05), nor the person with dementia’s quality of life (p > .05). Actual incongruence for IADL preferences was related to greater relationship strain for the person with dementia (β = −.30) but was not related to any other outcomes for the person with dementia or the caregiver (all p’s > .05). Actual PADL preference incongruence was not associated with either the caregiver or the person with dementia’s relationship strain, quality of life, or mood, nor the caregiver’s appraisal of the person with dementia’s mood (all p’s > .05). Table 4. Hierarchical Regression Analyses for Predicting Outcome Variables From Actual Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  Note: Congruence is measured by the number of care-related preferences shared by care partners. Thus, lower scores indicate greater incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. Significance for bolded items is indicated with asterisks. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. †p = .07, *p ≤ .05, **p ≤ .01. View Large Table 4. Hierarchical Regression Analyses for Predicting Outcome Variables From Actual Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  Note: Congruence is measured by the number of care-related preferences shared by care partners. Thus, lower scores indicate greater incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. Significance for bolded items is indicated with asterisks. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. †p = .07, *p ≤ .05, **p ≤ .01. View Large Results from the regression analyses for H2 (see Table 5) indicated that greater perceived incongruence for socioemotional preferences was related to the person with dementia’s quality of life (β = .34), and mood (β = .34), as well as the caregiver’s appraisal of the person with dementia’s mood (β = .30). Greater perceived incongruence for socioemotional preferences was also related to lower quality of life (β = .30) and worse mood (β = .34) for the caregiver, but did not significantly predict relationship strain for either member of the dyad (p > .05). Perceived incongruence for IADL preferences predicted higher levels of relationship strain for persons with dementia (β = −.35), and the caregiver’s appraisal of the person with dementia’s mood (β = .25) but was not predictive of any other outcomes (p’s > .05). Contrary to our hypotheses, greater perceived incongruence for PADL preferences predicted significantly higher caregiver quality of life (β = −.31), better caregiver mood (β = −.29), and better caregiver appraisal of the person with dementia’s mood (β = −.41). Perceived incongruence for PADL preferences was not associated with relationship strain for either the person with dementia or caregiver, nor was it related to the mood or quality of life of the person with dementia (p’s > .05). Table 5. Hierarchical Regression Analyses for Predicting Outcome Variables from Perceived Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  Note: Perceived congruence is measured by the number of care-related preferences shared by the caregiver and the caregiver’s perception of the person with dementia’s care preferences. Thus, lower scores indicate greater perceived incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. *p ≤ .05, **p ≤ .01, †p = .08. View Large Table 5. Hierarchical Regression Analyses for Predicting Outcome Variables from Perceived Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  Note: Perceived congruence is measured by the number of care-related preferences shared by the caregiver and the caregiver’s perception of the person with dementia’s care preferences. Thus, lower scores indicate greater perceived incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. *p ≤ .05, **p ≤ .01, †p = .08. View Large Overall, actual incongruence in socioemotional preferences predicted feelings of relationship strain and worse mood for the person with dementia, but had little affect on caregiver outcomes. Conversely, caregiver outcomes were not associated with actual congruence in preferences, but were most strongly related to perceived incongruence for PADL preferences, albeit in the direction opposite to that hypothesized. Discussion The present study provides several insights with respect to the impact of perceived and actual preference incongruence. First, the results suggest that actual socioemotional preference incongruence may negatively affect the person with dementia’s mood and relationship strain. For caregivers, worries about future physical demands of caregiving (i.e., IADL and PADL assistance) may be a primary concern, whereas the social and emotional challenges associated with the illness experience may be less salient to the caregiver. Alternatively, the social and emotional aspects of dementia may be too painful for the caregiver to deal with and accept. Understanding a person with dementia’s experience with receiving a dementia diagnosis and initiating care discussions early on in the disease trajectory may help to raise awareness about the socioemotional preferences of the person with dementia and their importance compared to the provision of care for the person with dementia. The perceived incongruence analyses revealed an unexpected finding related to PADLs. Specifically, higher levels of perceived incongruence for PADL preferences were related to better, not worse, quality of life and mood for the caregiver. As a preliminary attempt to make sense of this finding, we examined the clinical notes from several cases that exemplified this finding. Case notes indicated that several of the caregivers who reported higher quality of life and mood in addition to higher levels of incongruence worked during the day, had a family of their own, and indicated that they were considering placing the person with dementia in a long-term care facility. Thus, it is possible that perceived incongruence of PADL preferences in this study represents caregivers who are not negatively affected by these types of future care tasks because they have already considered the factors that exist in their own lives that do not permit them to provide care without formal help. That is, it may be the case that these caregivers see the use of professional PADL assistance as an option for the person with dementia, even though they believe that the person with dementia would prefer for them to help with these tasks. Conversely, caregivers who are resistant to utilizing outside help may be aligned with their loved one in terms of care preferences (both care partners prefer the caregiver to do everything), but the responsibility of actually providing assistance with all of these care tasks can become a major source of stress for the caregiver. It may also be the case that the process of perspective-taking on the part of the caregiver is associated with understanding the person with dementia’s experience of his/her illness. The ability to take the perspective of the person with dementia might contribute to the caregiver’s ability to recognize preference incongruence. It should be noted that these explanations are exploratory and speculative in nature, extending well beyond the scope of our a priori hypotheses and analyses. Unfortunately, our data do not allow for further analyses into these speculations. Future research on this topic may shed light on this anomalous finding. The finding that perceived incongruence is more strongly related to psychosocial well-being relative to actual incongruence has implications for care planning interventions. Specifically, if incorrect perceptions of preference incongruence (especially for those preferences related to socioemotional care tasks) can be rectified through structured care-related discussions early in the course of the disease, this may have a positive effect on well-being. Moreover, even if preferences differ between care partners, understanding and communicating these preferences may help to create a stronger network of understanding between the caregiver and the person with dementia. The communication and cooperation that is characteristic of care partners working together is reflected in the dyadic approach to intervention in dementia (Braun, et al., 2009; Judge, Yarry, & Orsulic-Jeras, 2010; Keady & Nolan, 2003; Whitlatch, Judge, Zarit, & Femia, 2006; Whitlatch, 2013; Yarry, Judge, Orsulic-Jeras, 2010). An increasing number of research studies have found efficacious results for dementia care management techniques built upon the inclusion of both the caregiver and the person with dementia in the care process. Existing dyadic interventions in dementia demonstrate increased communication and mutual understanding, leading to improvements in the relationship of the care partners, social well-being, and cognitive function of the person with dementia (for an overview, see Moon & Adams, 2013). However, nonpharmacological research in the field of dementia often focuses on either the caregiver or the person with dementia in isolation, rather than taking a dyadic perspective. Interventions for the person with dementia are often designed for the more advanced stages of the illness, well after the best opportunity to make plans and discuss preferences has passed. Interventions targeted for the early stages of dementia often under-emphasize or overlook the perspective of the person with dementia, focusing instead on improving caregiver mastery and resources (Braun et al., 2009). Conclusion This study examined the effects of actual and perceived care-related preference incongruence on quality of life, relationship strain, and mood for persons with dementia and caregivers. The implications of these findings indicate that socioemotional care-related preferences be included in early care planning discussions about dementia. Moreover, if these discussions can serve to rectify any false perceptions about care preferences, it may help to reduce the negative effects of such perceptions for the caregiver. This study is among the first to examine the relationship between psychosocial well-being and incongruent care preferences in dementia. A significant limitation of this study is the use of correlative data. It is difficult to understand fully whether preference incongruence has a direct impact on outcomes, or if another factor may be influencing both well-being and perceptions about preferences. For instance, behavioral problems may affect quality of life and lead a caregiver to believe that the Person with dementia’s preferences are not aligned with his or her own. Future studies should further examine the role of perceived incongruence, especially PADL incongruence, on well-being for the caregiver. Including the perceived incongruence of the person with dementia, as well as the accuracy of the perceptions of the care partner’s preferences (i.e., perceptions of the care partner’s preferences compared to his/her actual preferences) may help to further clarify care planning incongruence and its relationship to well-being. To better understand the nature of the relationship between incongruence and psychosocial outcomes, open-ended interviews with care partners and qualitative data analyses may be a fruitful direction for future research. This approach may reveal interpersonal aspects of the care role from the perspective of both partners that might not arise using more structured quantitative methodology. Due to the use of secondary data from a care planning intervention study, the sample was restricted to persons with dementia in the early stages (i.e., the “planning stage”) who did not yet require an extensive level of care. The impact of preference incongruence on the well-being of the caregiver and the person with dementia may be substantially different over the course of the entire illness. Thus, preference incongruence across the disease trajectory may be a lucrative direction for future research. Finally, future research should examine the impact of care preference discussions on perceived and actual preference incongruence, as well as outcomes such as those examined in this study. Funding This work was supported by The Administration for Community Living (formerly Administration on Aging), U.S. Department of Health and Human Services [90AI0400]. References Andersen C. K. Wittrup-Jensen K. U. Lolk A. Andersen K., & Kragh-Sørensen P. ( 2004). Ability to perform activities of daily living is the main factor affecting quality of life in patients with dementia. Health and quality of life outcomes , 2, 52. doi: 10.1186/1477-7525-2-52 Google Scholar CrossRef Search ADS   Aneshensel C. S. Pearlin L. I. Mullan J. T. Zarit S. H., & Whitlatch C. J. ( 1995). Profiles in caregiving: The unexpected career . San Diego, CA: Academic Press. Alzheimer’s Association. ( 2016). 2016 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia , 12( 4), 459– 509. doi: http://dx.doi.org/10.1016/j.jalz.2016.03.001 CrossRef Search ADS   Bass D. M. Tausig M. B., & Noelker L. S. ( 1989). Elder impairment, social support and caregiver strain: A framework for understanding support’s effects. Journal of Applied Social Sciences , 13, 80– 117. Braun M. Scholz U. Bailey B. Perren S. Hornung R., & Martin M. ( 2009). Dementia caregiving in spousal relationships: A dyadic perspective. Aging & Mental Health , 13( 3), 426– 436. doi: http://dx.doi.org/10.1080/13607860902879441 Google Scholar CrossRef Search ADS   Brod M. Stewart A. L. Sands L., & Walton P. ( 1999). Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). The Gerontologist , 39( 1), 25– 35. doi: http://dx.doi.org/10.1093/geront/39.1.25 Google Scholar CrossRef Search ADS   Carpenter B. D. Van Haitsma K. Ruckdeschel K., & Lawton M. P. ( 2000). The psychosocial preferences of older adults a pilot examination of content and structure. The Gerontologist , 40( 3), 335– 348. doi: http://dx.doi.org/10.1093/geront/40.3.335 Google Scholar CrossRef Search ADS   Carpenter B. D. Kissel E. C., & Lee M. M. ( 2007). Preferences and life evaluations of older adults with and without dementia: reliability, stability, and proxy knowledge. Psychology and Aging , 22( 3), 650– 655. doi: http://dx.doi.org/10.1037/0882-7974.22.3.650 Google Scholar CrossRef Search ADS   Clark P. A. Tucke S. S., & Whitlatch C. J. ( 2008). Consistency of information from persons with dementia; An analysis of differences by question type. Dementia , 7( 3), 341– 358. doi: http://dx.doi.org/10.1177/1471301208093288 Google Scholar CrossRef Search ADS   Dening K. H. Jones L., & Sampson E. L. ( 2011). Advance care planning for people with dementia: A review. International Psychogeriatrics , 23( 10), 1535– 1551. doi: http://dx.doi.org/10.1017/s1041610211001608 Google Scholar CrossRef Search ADS   de Boer M. E. Hertogh C. M. P. M. Dröes R.-M. Riphagen I. I. Jonker C., & Eefsting J. A. ( 2007). Suffering from dementia—the patient’s perspective: A review of the literature. International Psychogeriatrics International Psychogeriatric Association , 196, 1021– 1039. doi: http://dx.doi.org/10.1017/s1041610207005765 Etters L. Goodall D., & Harrison B. E. ( 2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners , 20( 8), 423– 428. doi: http://dx.doi.org/10.1111/j.1745-7599.2008.00342.x Google Scholar CrossRef Search ADS   Folstein M. F. Folstein S. E., & McHugh P. R. ( 1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research , 12( 3), 189– 198. doi: http://dx.doi.org/10.1016/0022-3956(75)90026-6 Google Scholar CrossRef Search ADS   Gaugler J. E. Davey A. Pearlin L. I., & Zarit S. H. ( 2000). Modeling caregiver adaptation over time: The longitudinal impact of behavior problems. Psychology and Aging , 15( 3), 437– 450. doi: http://dx.doi.org/10.1037//0882-7974.15.3.437 Google Scholar CrossRef Search ADS   Gauthier S. Cummings J. Ballard C. Brodaty H. Grossberg G., Robert P., & Lyketsos C. ( 2010). Management of behavioral problems in Alzheimer’s disease. International Psychogeriatrics/IPA , 22( 3), 346– 372. doi: http://dx.doi.org/10.1017/s1041610209991505 Google Scholar CrossRef Search ADS   Giebel C. M. Sutcliffe C., & Challis D. ( 2015). Activities of daily living and quality of life across different stages of dementia: A UK study. Aging & Mental Health , 19( 1), 63– 71. doi: http://dx.doi.org/10.1080/13607863.2014.915920 Google Scholar CrossRef Search ADS   Giebel C. M. Sutcliffe C. Stolt M. Karlsson S. Renom-Guiteras A. Soto M., … Challis D. ( 2014). Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: A European study. International Psychogeriatrics C International Psychogeriatric Association , 268, 1283– 1293. doi: http://dx.doi.org/10.1017/s1041610214000775 Google Scholar CrossRef Search ADS   Harman G., & Clare L. ( 2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research , 16( 4), 484– 502. doi: http://dx.doi.org/10.1177/1049732306286851 Google Scholar CrossRef Search ADS   Hawkins N. A. Ditto P. H. Danks J. H., & Smucker W. D. ( 2005). Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. The Gerontologist , 45( 1), 107– 117. doi: http://dx.doi.org/10.1093/geront/45.1.107 Google Scholar CrossRef Search ADS   Heid A. R. Zarit S. H., & Van Haitsma K. ( 2016). Older adults’ influence in family care: How do daughters and aging parents navigate differences in care goals? Aging & Mental Health , 20( 1), 46– 55. doi: http://dx.doi.org/10.1080/13607863.2015.1049117 Google Scholar CrossRef Search ADS   Judge K. S. Camp C. J., & Orsulic-Jeras S. ( 2000). Use of Montessori-based activities for clients with dementia in adult day care: Effects on engagement. American Journal of Alzheimer’s Disease and Other Dementias , 15( 1), 42– 46. doi: http://dx.doi.org/10.1177/153331750001500105 Google Scholar CrossRef Search ADS   Judge K. S. Yarry S. J., & Orsulic-Jeras S. ( 2010). Acceptability and feasibility results of a strength-based skills training program for dementia caregiving dyads. The Gerontologist , 50( 3), 408– 417. doi: http://dx.doi.org/10.1093/geront/gnp138 Google Scholar CrossRef Search ADS   Keady J., & Nolan M. ( 2003). The dynamics of dementia: Working together, working separately, or working alone. In M. Nolan U. Lundh G. Grant, & J. Keady (Eds.). Partnership in Family Care  (pp. 15– 32). Buckingham: Open University Press. Krestar M. L. Looman W. Powers S. Dawson N., & Judge K. S. ( 2012). Including individuals with memory impairment in the research process: The importance of scales and response categories used in surveys. Journal of Empirical Research on Human Research Ethics , 7( 2), 70– 79. doi: http://dx.doi.org/10.1525/jer.2012.7.2.70 Google Scholar CrossRef Search ADS   Logsdon R. G. Gibbons L. E. McCurry S. M., & Teri L. ( 1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging , 5( 1), 28– 36. Lyons K. S. Zarit S. H. Sayer A. G., & Whitlatch C. J. ( 2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences , 57( 3), 195– 204. doi: http://dx.doi.org/10.1093/geronb/57.3.p195 Google Scholar CrossRef Search ADS   Menne H. L., & Whitlatch C. J. ( 2007). Decision-making involvement of individuals with dementia. The Gerontologist , 47( 6), 810– 819. doi: http://dx.doi.org/10.1093/geront/47.6.810 Google Scholar CrossRef Search ADS   Moon H., & Adams K. B. ( 2013). The effectiveness of dyadic interventions for people with dementia and their caregivers. Dementia , 12( 6), 821– 839. doi: http://dx.doi.org/10.1177/1471301212447026 Google Scholar CrossRef Search ADS   Moyle W. Murfield J. E. Griffiths S. G., & Venturato L. ( 2012). Assessing quality of life of older people with dementia: A comparison of quantitative self‐report and proxy accounts. Journal of Advanced Nursing , 68( 10), 2237– 2246. doi: http://dx.doi.org/10.1111/j.1365-2648.2011.05912.x Google Scholar CrossRef Search ADS   Popham C., & Orrell M. ( 2012). What matters for people with dementia in care homes? Aging & mental health , 16( 2), 181– 188. doi: 10.1080/13607863.2011.628972 Google Scholar CrossRef Search ADS   Poppe M. Burleigh S., & Banerjee S. ( 2013). Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PloS ONE , 8( 4), e60412. doi: http://dx.doi.org/10.1371/journal.pone.0060412 Google Scholar CrossRef Search ADS   Prorok J. C. Horgan S., & Seitz D. P. ( 2013). Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal , 185( 14), e669– e680. doi: http://dx.doi.org/10.1503/cmaj.121795 Google Scholar CrossRef Search ADS   Reamy A. M. Kim K. Zarit S. H., & Whitlatch C. J. ( 2011). Understanding discrepancy in perceptions of values: Individuals with mild to moderate dementia and their family caregivers. Gerontologist , 51( 4), 473– 483. doi: http://dx.doi.org/10.1093/geront/gnr010 Google Scholar CrossRef Search ADS   Reamy A. M. Kim K. Zarit S. H., & Whitlatch C. J. ( 2013). Values and preferences of individuals with dementia: Perceptions of family caregivers over time. Gerontologist , 53( 2), 293– 302. doi: http://dx.doi.org/10.1093/geront/gns078 Google Scholar CrossRef Search ADS   Robinson L. Bamford C. Beyer F. Clark A. Dickinson C. Emmet C., … & Rousseau N. ( 2010). Patient preferences for future care-how can Advance Care Planning become embedded into dementia care: A study protocol. BMC geriatrics , 10( 1), 1. doi: http://dx.doi.org/10.1186/1471-2318-10-2 Google Scholar CrossRef Search ADS   Robinson L. Clare L., & Evans K. ( 2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health , 9( 4), 337– 347. doi: http://dx.doi.org/10.1080/13607860500114555 Google Scholar CrossRef Search ADS   Schulz R., & Martire L. M. ( 2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry : Official Journal of the American Association for Geriatric Psychiatry , 12, 240– 249. doi: http://dx.doi.org/10.1097/00019442-200405000-00002 Google Scholar CrossRef Search ADS   Sebern M. D., & Whitlatch C. J. ( 2007). Dyadic relationship scale: A measure of the impact of the provision and receipt of family care. The Gerontologist , 47( 6), 741– 751. doi: http://dx.doi.org/10.1093/geront/47.6.741 Google Scholar CrossRef Search ADS   van Soest-Poortvliet M. C. van der Steen J. T. de Vet H. C. Hertogh C. M. Deliens L., & Onwuteaka-Philipsen B. D. ( 2015). Comfort goal of care and end-of-life outcomes in dementia: A prospective study. Palliative Medicine , 29( 6), 538– 546. doi: http://dx.doi.org/10.1177/0269216315570409 Google Scholar CrossRef Search ADS   Vernooij-Dassen M. Vasse E. Zuidema S. Cohen-Mansfield J., & Moyle W. ( 2010). Psychosocial interventions for dementia patients in long-term care. International Psychogeriatrics/IPA , 22( 7), 1121– 1128. doi: http://dx.doi.org/10.1017/s1041610210001365 Google Scholar CrossRef Search ADS   Volandes A. E. Paasche-Orlow M. K. Barry M. J. Gillick M. R. Minaker K. L. Chang Y., … & Mitchell S. L. ( 2009). Video decision support tool for advance care planning in dementia: Randomised controlled trial. Medical Decision Making , 30( 1), 29– 34. doi: http://dx.doi.org/10.1136/bmj.b2159 Google Scholar CrossRef Search ADS   Whitlatch C. J. ( 2010). Assessing the personal preferences of persons with dementia. In Lichtenberg P. ( Ed.). Handbook of Assessment in Clinical Gerontology  (pp. 557– 580). Elsevier Publishing. doi: 10.1016/B978-0-12-374961-1.10021-1 Whitlatch C. J. ( 2013). Person-centered care in the early stages of dementia : Honoring individuals and their choices. Generations , 37( 3), 30– 37. Whitlatch C. J. Feinberg L. F., & Tucke S. ( 2005a). Accuracy and consistency of responses from persons with cognitive impairment. Dementia , 4( 2), 171– 183. doi: http://dx.doi.org/10.1177/ 1471301205051091 Google Scholar CrossRef Search ADS   Whitlatch C. J. Feinberg L. F., & Tucke S. ( 2005b). Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers. The Gerontologist , 45( 3), 370– 380. doi: http://dx.doi.org/10.1093/geront/45.3.370 Google Scholar CrossRef Search ADS   Whitlatch C. J. Judge K. Zarit S. H., & Femia E. ( 2006). Dyadic intervention for family caregivers and care receivers in early-stage dementia. The Gerontologist , 46( 5), 688– 694. doi: http://dx.doi.org/10.1093/geront/46.5.688 Google Scholar CrossRef Search ADS   Woods B. ( 1999). The person in dementia care. Generations , 23( 3), 35. Yarry S. J. Judge K. S., & Orsulic-Jeras S. ( 2010). Applying a strength-based intervention for dyads with mild to moderate memory loss: Two case examples. Dementia , 9, 549– 557. doi: http://dx.doi.org/10.1177/1471301210384315 Google Scholar CrossRef Search ADS   © The Author(s) 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Gerontologist Oxford University Press

Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners

Loading next page...
 
/lp/ou_press/does-it-matter-if-we-disagree-the-impact-of-incongruent-care-uZPMp1I8vS
Publisher
Oxford University Press
Copyright
© The Author(s) 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
ISSN
0016-9013
eISSN
1758-5341
D.O.I.
10.1093/geront/gnw202
Publisher site
See Article on Publisher Site

Abstract

Abstract Purpose To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver’s care-related preferences, the person with dementia’s care-related preferences, and the caregiver’s perception of the person with dementia’s preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia’s well-being. Dementia, Caregiving, Care Planning, Preferences, Incongruence Alzheimer’s disease and related dementias are marked by progressive cognitive and physical decline. Consequently, persons with dementia typically require an increasing level of care due to a decline in ability to perform activities of daily living (Giebel et al., 2014; Giebel, Sutcliffe, & Challis, 2015), diminished cognitive function, and an increased frequency of problematic behavioral expressions of dementia (Gaugler, Davey, Pearlin, & Zarit, 2000; Gauthier et al., 2010). The majority of individuals who will take on the task of caring for persons with dementia are unpaid and untrained family members and friends (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). Of the estimated 5.4 million persons living with Alzheimer’s Disease in the United States (Alzheimer’s Association, 2016), about 75% are cared for by these informal caregivers (Schulz & Martire, 2004). The relationship between a person with dementia and his/her caregiver is often characterized by interpersonal role and responsibility changes over the course of the disease (Prorok, Horgan, & Seitz, 2013). As these changes occur, persons with dementia often struggle to maintain a sense of independence and well-being within the context of the disease and their changing roles. As the disease progresses from the early stages to the moderate and advanced, caregivers frequently struggle to meet the physical and psychosocial demands of caregiving (Etters, Goodall, & Harrison, 2008). Over the course of the disease, decisions made by the caregiver regarding the provision of care for the person with dementia may fail to adequately reflect the person with dementia’s own preferences about care (Hawkins, Ditto, Danks, & Smucker, 2005). The impact of such incongruence regarding care preferences may result in or reflect maladaptive care planning, as well as negative psychosocial well-being for both the person with dementia and the caregiver, resulting in care partners who are “working separately” to cope with dementia rather than “working together” (Keady & Nolan, 2003). Care planning and decision making in dementia includes a wide range of care-related issues, from decisions related to sudden events or crises to decisions about the management and provision of daily care needs. The development of a care plan early in the course of the disease, preferably one that accommodates the values and preferences of both the caregiver and the person with dementia, is best undertaken before care needs become numerous and the cognitive abilities of the person with dementia interfere with the ability to engage in care planning and state preferences (Robinson et al., 2010). Many effective psychosocial interventions for persons with dementia utilize a “person-centered approach” focused on preserving autonomy while ensuring that persons with dementia are active, engaged, and independent as long as possible (Judge, Camp, & Orsulic-Jeras, 2000; Vernooij-Dassen, Vasse, Zuidema, Cohen-Mansfield, & Moyle, 2010). Unfortunately, these programs typically do not engage the person with dementia until the symptoms are in the moderate to advanced stages. Similarly, few interventions provide support to the caregiver early in their caregiving career. If the person with dementia’s perspective is not included early in the disease process, decisions made by the family caregiver regarding daily care and the development of a care plan may not reflect the wishes of the person with dementia (Menne & Whitlatch, 2007; Whitlatch, Feinberg, & Tucke, 2005b). Indeed, communication about future care often does not take place at all, leaving caregivers alone in the decision-making role without the knowledge of what their loved one wants. Current research on care planning in dementia focuses on advance care planning and end-of-life decision making for persons with dementia and their caregivers (Dening, Jones, & Sampson, 2011; Volandes et al., 2009; van Soest-Poortvliet et al., 2015; Poppe, Burleigh, & Banerjee, 2013). In contrast, care planning for everyday care has received less attention in the literature. This paper aims to contribute to the literature on care planning for everyday care in dementia by examining care preference-related incongruence for persons with dementia and their caregivers. We use a measure assessing the preferred provider of care (e.g., the caregiver, service providers, or friends/family) for a variety of care tasks. With this information, we examine differences in (1) actual preference incongruences (i.e., differences in caregiver and person with dementia self-reported preferences for who should help with care tasks) and (2) incongruences that are perceived by the caregiver (whether actual or not). Finally, incongruence of actual and perceived care preferences for three domains of care (i.e., socioemotional tasks, PADLs, and IADLs) is used to predict psychosocial well-being outcomes for the person with dementia and the caregiver. Preference Incongruence and Domains of Care To date, little research exists examining the psychosocial impact of care-related preference incongruence for persons with dementia and their care partners despite evidence that such discrepancies exist in both community and long-term care settings. For example, proxies reporting on behalf of persons with dementia often have limited knowledge about the care preferences of persons with dementia (Hawkins et al., 2005), and knowledge about psychosocial care preferences may be more limited when the care partner is more cognitively impaired (Carpenter, Kissel, & Lee, 2007). When there is a disagreement about care goals between care partners, adult daughter caregivers tend to reason with their parents who oftentimes yield to the preferences of the caregiver (Heid, Zarit, & Van Haitsma, 2016). Despite this literature, no studies to our knowledge have examined the link between preference incongruence and psychosocial well-being. Although discrepancies in appraisal of caregiving difficulty has been linked to greater relationship strain for the caregiver (Lyons et al., 2002), the psychosocial impact of discrepancies in preferences for care has yet to be examined. Research on care values indicates that informal caregivers consistently under-estimate the importance of the person with dementia’s values compared to the importance the person with dementia self-reports (Reamy, Kim, Zarit, & Whitlatch, 2011; Reamy, Kim, Zarit, & Whitlatch, 2013). In long-term care, for example, staff tends to perceive safety and a home-like atmosphere as most importance for residents, though residents most value autonomy and independence, including the ability to make choices, engage in activities, and make decisions about their own care (Popham & Orrell, 2012). The high importance placed on autonomy by persons with dementia is consistent with the finding that independence in ability to perform instrumental activities of daily living (IADLs) and personal activities of daily living (PADLs) is a strong contributor to quality of life for persons with dementia (Andersen, Wittrup-Jensen, Lolk, Andersen, & Kragh-Sørensen, 2004). It should be noted that these care “values” represent the importance of various aspects of care, and are therefore different from care “preferences,” which represent how the respondent would prefer for care to be provided. Nevertheless, we use the care values literature to emphasize the incongruences that often exist between the unique perspective of the caregiver and the person with dementia. Even though care-related preferences of persons with dementia remain relatively stable over time (Carpenter et al., 2007), it is important for caregivers to sustain communication with the person with dementia regarding care preferences over the changing course of the disease. Indeed, the ability to accurately report on values and preferences for everyday care remains relatively stable through the moderate stages of the disease (Clark, Tucke, & Whitlatch, 2008; Whitlatch, Feinberg, & Tucke, 2005a). Nevertheless, it is not uncommon for family members to doubt the response accuracy of persons with dementia (Woods, 1999). This discrepancy in ability and perception marks an important obstacle for ensuring that the person with dementia’s voice is heard throughout the care planning process. The perspective of persons with dementia regarding care values and preferences is shaped by their experience of the disease. In a review of 50 international articles, de Boer and colleagues (2007) identified a multifaceted illness experience marked by feelings associated with receiving a diagnosis, fear of loss of ability, and future care needs. The onset of symptoms and associated challenges place major demands on a person with dementia’s coping resources, leaving them feeling depleted and appearing more impaired than they actually are (Robinson, Clare, & Evans, 2005). Loss of autonomy, communication difficulty, cognitive and functional decline, as well as relationships with others serve as major stressors for persons with dementia (de Boer et al., 2007; Harman & Clare, 2006). The impact of dementia on family caregivers is distinctly different than the experience of the person with dementia. Caregivers often begin their caregiving role by providing help with IADLs such as shopping, making appointments, and providing transportation. As the dementia progresses, persons with dementia typically require increasingly greater levels of assistance with PADLs (e.g., bathing, dressing, and toileting) in addition to IADLs, oftentimes with no plan in place if the caregiver becomes ill or can no longer provide care. The socioemotional values and preferences of the person with dementia such as the desire to maintain autonomy and social relationships may be less salient to the caregiver, who is more focused on the person’s physical health and safety. The experience of each care partner within these social, cognitive, and physical domains may differentially influence their care-related preferences. This issue of care preference domains was raised by Carpenter, Van Haitsma, Ruckdeschel, & Lawton (2000) in a study of cognitively intact older adults. These authors suggest that there may be differences in preferences and perceived importance of preferences across a variety domains, including social contact, leisure activities, and support aids, for example. In the present study, preferences related to the provision of care tasks are organized into preferences for who will assist with PADLs, IADLs, and socioemotional tasks (see Tables 1 and 2 for a list of all items). Table 1. Percentage of Actual Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5    Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” care partners’ responses to who they would prefer to help with each task had to match exactly. View Large Table 1. Percentage of Actual Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5    Congruencea (%)  IADL preferences   1. Taking medications  84.1   2. Medical appointments  86.5   3. Health decisions  68.3   4. Legal/financial  75.0   5. Housework  51.2   6. Shopping  83.3   7. Cooking  71.2   8. Laundry  77.8   9. Transportation  68.3  PADL preferences   10. Eating  78.2   11. Dressing  79.4   12. Bathing  72.2   13. Toileting  70.4   14. In/out of bed  78.2   15. Nighttime help  85.5  Socioemotional preferences   16. Companionship  65.1   17. Activities  60.5   18. Going out  72.2   19. Emotional support  60.5  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” care partners’ responses to who they would prefer to help with each task had to match exactly. View Large Table 2. Percentage of Perceived Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2    Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” caregivers’ own preferences and the caregiver’s perception of their partner’s preferences for who they would prefer to help with each task had to match exactly. View Large Table 2. Percentage of Perceived Congruence by Item   Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2    Congruencea (%)  IADL preferences   1. Taking medications  95.2   2. Medical appointments  94.4   3. Health decisions  89.7   4. Legal/financial  88.1   5. Housework  79.4   6. Shopping  92.1   7. Cooking  88.9   8. Laundry  91.3   9. Transportation  84.9  PADL preferences   10. Eating  90.5   11. Dressing  92.9   12. Bathing  86.5   13. Toileting  86.5   14. In/out of bed  89.7   15. Nighttime help  96.8  Socioemotional preferences   16. Companionship  86.5   17. Activities  83.3   18. Going out  82.5   19. Emotional support  76.2  Note: IADL = instrumental activities of daily living; PADL = personal activities of daily living. aTo be considered “congruent,” caregivers’ own preferences and the caregiver’s perception of their partner’s preferences for who they would prefer to help with each task had to match exactly. View Large Hypotheses We examined the impact of preference incongruence in domains related to physical care (PADLs) and nonphysical care (IADLs) which may foster feelings of dependence in the person with dementia, as well as socioemotional domains of care (the items corresponding to each of these domains of care are listed in Tables 1 and 2). We refer to discrepancies between the caregiver’s preferences and person with dementia’s preferences for the person with dementia’s care as actual incongruence. Thus, if a caregiver prefers to use paid help to provide transportation for the person with dementia, but the person with dementia prefers the caregiver to help with transportation, this would be an example of actual incongruence. Conversely, we refer to discrepancies between the caregiver’s own preferences and the caregiver’s perception of the person with dementia’s preferences as perceived incongruence. Thus, if the caregiver prefers to use paid help for transportation, but thinks that the person with dementia prefers a family member to help with transportation, this would be an example of a perceived incongruence. It is important to note that perceived incongruence is a reflection only of the beliefs of the caregiver and does not represent the person with dementia’s actual preferences. Given these definitions, we hypothesized that, 1a. Actual incongruence on IADL and PADL preferences will predict higher levels of dyadic relationship strain, more negative mood, and lower quality of life for the caregiver and the person with dementia. 1b. Actual incongruence on socioemotional preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for the person with dementia, but not for the caregiver. 2a. Perceived incongruence on IADL and PADL preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for both the caregiver and the person with dementia. 2b. Perceived incongruence on socioemotional preferences will predict higher levels of dyadic relationship strain, negative mood, and lower quality of life for both the caregiver and the person with dementia. 2c. Caregivers with greater perceived incongruence on IADL, PADL, and socioemotional preferences will rate the person with dementia’s mood as more negative. It is important to underscore that socioemotional preference incongruence is hypothesized to have a different effect on the caregiver and the person with dementia. Previously, we hypothesized that actual incongruence for socioemotional preferences will negatively affect the person with dementia, but not the caregiver (H1b). Our rationale for this hypothesis is based on the psychosocial concerns reported by persons with dementia after diagnosis, such as fears about autonomy, not being a burden, and being able to maintain a social life (de Boer et al., 2007). As discussed earlier, socioemotional issues related to dementia may be less salient to caregivers, who may be focused more heavily on providing physical and instrumental care for their care partner. For perceived incongruence, we hypothesized the opposite (H2b). Since perceived incongruence is a measure of caregiver perception only, any incongruences in this respect are salient to the caregiver. Therefore, we hypothesize that we will see negative outcomes for those caregivers who believe that their own socioemotional preferences differ from those of their care partner. Methods Participants Secondary baseline data was analyzed that had been collected as part of a larger intervention study. A convenience sample of 128 dyads was included for analysis, with each dyad consisting of a person with mild-to-moderate dementia and an informal caregiver. Participants were recruited from the Northern Ohio region. Dyads met eligibility requirements if the caregiver was the primary provider of care, the person with dementia was living in the community, and the person with dementia either had a confirmed diagnosis of dementia or had symptoms of memory impairment consistent with dementia. Procedure Trained interviewers met separately with participants in their homes or other preferred locations. All self-report measures of the person with dementia were administered by a trained interviewer, whereas caregiver measures were self-administered. This methodology is consistent with research indicating that persons with early-to-moderate stage dementia are able to provide meaningful responses on a wide range of measures (Brod, Stewart, Sands, & Walton, 1999; Clark, et al., 2008; Krestar, Looman, Powers, Dawson, & Judge, 2012; Moyle, Murfield, Griffiths, & Venturato, 2012; Whitlatch et al., 2005a). Measures Demographics Sociodemographic information included age, race, gender, education level (ranging from 1 = less than high school to 6 = post-college degree), number of years providing care, coresidence, relationship to caregiver, employment status, and income (ranging from 1= Less than $10,000 annually to 11 = $100,000 or more annually). For a full account of demographic information, see Table 3. Table 3. Demographic Information   M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30    M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30  Notes: Dyad N = 128. Education (1 = less than high school, 2 = some high school, 3 = high school graduate, 4 = some college, 5 = college graduate, 6 = post-college degree). Household annual income (1 = less than $10,000, 2 = $10,000–$19,999, 3 = $20,000–$29,999, 4 = $30,000–$39,999, 5 = $40,000–$49,999, 6 = $50,000–$59,999, 7 = $60,000–$69,999, 8 = $70,000–$79,999, 9 = $80,000–$89,999, 10 = $90,000–$99,999, 11 = $100,000 or over). M = mean; MMSE = mini-mental status examination; SD = standard deviation, PWD = person with dementia. View Large Table 3. Demographic Information   M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30    M  SD  Range  Caregiver   Age  66.96  11.25  39–87   Gender (female = 1)  0.73  0.45  0–1   Education  4.49  1.16  1–6   Household annual income  6.58  2.92  2–11   Spouse of PWD (yes = 1)  0.77  0.42  0–1   Child of PWD (yes = 1)  0.16  0.37  0–1   Live with PWD (yes = 1)  0.84  0.37  0–1   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1  Person with dementia   Age  72.72  8.85  43–90   Gender (female = 1)  0.46  0.5  0–1   Education  4.3  1.24  1–6   Hispanic (yes = 1)  0.02  0.13  0–1   Black (yes = 1)  0.07  0.26  0–1   MMSE score  23.53  4.86  16–30  Notes: Dyad N = 128. Education (1 = less than high school, 2 = some high school, 3 = high school graduate, 4 = some college, 5 = college graduate, 6 = post-college degree). Household annual income (1 = less than $10,000, 2 = $10,000–$19,999, 3 = $20,000–$29,999, 4 = $30,000–$39,999, 5 = $40,000–$49,999, 6 = $50,000–$59,999, 7 = $60,000–$69,999, 8 = $70,000–$79,999, 9 = $80,000–$89,999, 10 = $90,000–$99,999, 11 = $100,000 or over). M = mean; MMSE = mini-mental status examination; SD = standard deviation, PWD = person with dementia. View Large Dependent Variables The Quality of Life in Alzheimer’s Disease scale (Logsdon, Gibbons, McCurry, & Teri, 1999) is a gauge of overall quality of life, and includes items such as “How do you feel about your living situation?” and “How would you describe your life as a whole?” The Dementia Quality of Life scale (DQOL; Brod et al., 1999) is a measure of mood, with items such as “How often have you felt happy?” and “How often have you felt frustrated?” The relationship strain measure is a measure of positive dyadic interaction and negative dyadic strain, and contains items such as “My care partner and I treat each other as equals” and “My care partner gets on my nerves.” This measure was adapted from the Dyadic Relationship Scale (Sebern & Whitlatch, 2007; Bass, Tausig, & Noelker, 1989). Persons with dementia and caregivers completed each measure. In addition to self-reporting on each of these three measures, caregivers responded to a DQOL measure in which they were asked to rate their care partner’s mood. Dependent variable measures demonstrated good inter-item reliability using Cronbach’s alphas, with caregiver alphas ranging from .84 to .90, and alphas ranging from .85 to .92 for the person with dementia. Preferences for Care Tasks Scale The Preferences for Care Tasks Scale (PCTS; Whitlatch, 2010) is a 19-item measure assessing the preferences of the caregiver and the person with dementia. Respondents are asked to identify who they would prefer to have assist the person with dementia with various care-related tasks (e.g., Who would you prefer to help you with ____? (a) Your caregiver, (b) family/friends, (c) paid help/professional). The PCTS includes three subscales corresponding to PADL preferences (e.g., “Who would you prefer to help you with bathing or showering?”), IADL preferences (e.g., “Who would you prefer to help you with cooking or preparing meals?”), and socioemotional preferences (e.g., “Who would you prefer to help you when you need emotional support?”). For a full account of the items in the PCTS, see Tables 1 and 2. Both caregivers and persons with dementia responded to this measure, with (1) persons with dementia responding with their personal preferences for their own care, (2) caregivers responding with their own preferences for the person with dementia’s care, and (3) caregivers responding based on their perceptions of the person with dementia’s care preferences (i.e., a proxy-style response on behalf of the person with dementia). Results Scores on the Mini-Mental State Exam (MMSE; Folstein, Folstein, & McHugh, 1975) for the person with dementia ranged from 17 to 30, with an average score of 23.53. Thirty-two individuals scored more than 27 on the MMSE, but remained in the study because they had a confirmed diagnosis of dementia. Caregivers ranged in age from 39 to 87 years (mean [M] = 66.96 years, standard deviation [SD] = 11.25), with the majority being women (73%, n = 93). Persons with dementia ranged in age from 43 to 90 years (M = 72.72, SD = 8.85) and about half were women (46%, n = 59). Participants were predominantly White (caregivers, 90.6%, n = 116; persons with dementia, 89.8%, n = 115). Nine persons with dementia were African American (7%) and two were Hispanic (2%). Nine caregivers were African American (7%) and two were Hispanic (2%). The majority of caregivers were spouses (77%, n = 99) or children (16%, n = 21; see Table 3). Analytic Strategy Hierarchical regression analyses were used to test Hypotheses 1 and 2. A regression analysis was conducted for each dependent variable, totaling seven regression analyses for each hypothesis. The first step of each regression analysis included the covariates income, race, education, age, and gender of both the caregiver and the person with dementia (10 total covariates per analysis). After controlling for these factors, the independent variables of interest were entered in the second step of each analysis. Actual and perceived incongruence were calculated by counting the number of shared preferences within each of the three PCTS subscales. In order for preferences to be considered “shared” for a given item on the PCTS, the responses had to match exactly. Actual incongruence counts represented the number of nonshared preferences between the person with dementia and the caregiver. Perceived incongruence counts represented the number of nonshared preferences between the caregiver and the caregiver’s perceptions of the person with dementia’s preferences. Thus, higher scores represent a greater number of shared preferences, or congruence. To test Hypothesis 1, the number of shared preferences on each of the three subscales of the PCTS (IADL, PADL, and socioemotional preferences) were included as separate predictors in the analyses in order to examine the unique predictive ability of each subscale. The same method was used to test Hypothesis 2. Primary Analyses As shown in Table 4, results from the regression analyses for H1 indicated that actual incongruence of socioemotional preferences between the caregiver and person with dementia was related to greater relationship strain (β = −.29) and worse mood (β = .34) for the person with dementia, and the caregiver’s appraisal of the person with dementia’s mood (β = .26). However, actual incongruence was not related to the caregiver’s relationship strain, quality of life, or mood (p’s > .05), nor the person with dementia’s quality of life (p > .05). Actual incongruence for IADL preferences was related to greater relationship strain for the person with dementia (β = −.30) but was not related to any other outcomes for the person with dementia or the caregiver (all p’s > .05). Actual PADL preference incongruence was not associated with either the caregiver or the person with dementia’s relationship strain, quality of life, or mood, nor the caregiver’s appraisal of the person with dementia’s mood (all p’s > .05). Table 4. Hierarchical Regression Analyses for Predicting Outcome Variables From Actual Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  Note: Congruence is measured by the number of care-related preferences shared by care partners. Thus, lower scores indicate greater incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. Significance for bolded items is indicated with asterisks. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. †p = .07, *p ≤ .05, **p ≤ .01. View Large Table 4. Hierarchical Regression Analyses for Predicting Outcome Variables From Actual Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .05  .15**  .13*  .04  .01  0.05  0.08†  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   IADL preference congruence  0.44  .14  −1.24*  −.30*  1.00  .19  0.65  .21  −0.11  −.04  0.81  .18  0.88  .17   PADL preference congruence  −0.15  −.05  −0.01  −.01  −1.05  −.20  −0.27  −.09  −0.11  −.04  −0.81  −.18  −0.74  −.14  Socioemotional preference congruence  1.00  .21  −1.76*  −.29*  2.73**  .34**  0.37  .08  −0.86  −.18  1.07  .16  1.99 *  .26*  Note: Congruence is measured by the number of care-related preferences shared by care partners. Thus, lower scores indicate greater incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. Significance for bolded items is indicated with asterisks. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. †p = .07, *p ≤ .05, **p ≤ .01. View Large Results from the regression analyses for H2 (see Table 5) indicated that greater perceived incongruence for socioemotional preferences was related to the person with dementia’s quality of life (β = .34), and mood (β = .34), as well as the caregiver’s appraisal of the person with dementia’s mood (β = .30). Greater perceived incongruence for socioemotional preferences was also related to lower quality of life (β = .30) and worse mood (β = .34) for the caregiver, but did not significantly predict relationship strain for either member of the dyad (p > .05). Perceived incongruence for IADL preferences predicted higher levels of relationship strain for persons with dementia (β = −.35), and the caregiver’s appraisal of the person with dementia’s mood (β = .25) but was not predictive of any other outcomes (p’s > .05). Contrary to our hypotheses, greater perceived incongruence for PADL preferences predicted significantly higher caregiver quality of life (β = −.31), better caregiver mood (β = −.29), and better caregiver appraisal of the person with dementia’s mood (β = −.41). Perceived incongruence for PADL preferences was not associated with relationship strain for either the person with dementia or caregiver, nor was it related to the mood or quality of life of the person with dementia (p’s > .05). Table 5. Hierarchical Regression Analyses for Predicting Outcome Variables from Perceived Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  Note: Perceived congruence is measured by the number of care-related preferences shared by the caregiver and the caregiver’s perception of the person with dementia’s care preferences. Thus, lower scores indicate greater perceived incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. *p ≤ .05, **p ≤ .01, †p = .08. View Large Table 5. Hierarchical Regression Analyses for Predicting Outcome Variables from Perceived Congruence (N = 128) R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  R2 Change from step onea  Person with dementia  Caregiver  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Quality of life—AD  Dyadic relationship strain  Mood (DQOL)  Appraisal of partner’s mood  .09*  .15**  0.08†  .08*  .06  .09*  .16**  Independent variable  B  β  B  β  B  β  B  β  B  β  B  β  B  β   Perceived IADL preference congruence  0.28  .07  −1.96**  −.35**  0.47  .07  0.25  .07  −0.85  −.21  0.72  .13  1.65*  .25*   Perceived PADL preference congruence  −0.56  −.12  0.94  .16  −1.95  −.25  −1.39*  −.31*  0.29  .06  −1.92*  −.29*  −3.04**  −.41**   Perceived socioemotional preference congruence  1.98**  .34**  −1.65  −.23  3.32*  .34*  1.63*  .30*  −0.83  −.15  2.64*  .33*  3.06*  .33*  Note: Perceived congruence is measured by the number of care-related preferences shared by the caregiver and the caregiver’s perception of the person with dementia’s care preferences. Thus, lower scores indicate greater perceived incongruence. Higher scores on dependent variable measures represent better outcomes, with the exception of dyadic relationship strain, for which higher scores indicate higher levels of strain. AD = Alzheimer’s disease; DQOL = Dementia Quality of Life scale; IADL = instrumental activities of daily living; PADL = personal activities of daily living. aReported statistics represent the second step in a hierarchical regression analysis after controlling for both the person with dementia and the caregiver’s income, race, education level, age, and gender in step one. *p ≤ .05, **p ≤ .01, †p = .08. View Large Overall, actual incongruence in socioemotional preferences predicted feelings of relationship strain and worse mood for the person with dementia, but had little affect on caregiver outcomes. Conversely, caregiver outcomes were not associated with actual congruence in preferences, but were most strongly related to perceived incongruence for PADL preferences, albeit in the direction opposite to that hypothesized. Discussion The present study provides several insights with respect to the impact of perceived and actual preference incongruence. First, the results suggest that actual socioemotional preference incongruence may negatively affect the person with dementia’s mood and relationship strain. For caregivers, worries about future physical demands of caregiving (i.e., IADL and PADL assistance) may be a primary concern, whereas the social and emotional challenges associated with the illness experience may be less salient to the caregiver. Alternatively, the social and emotional aspects of dementia may be too painful for the caregiver to deal with and accept. Understanding a person with dementia’s experience with receiving a dementia diagnosis and initiating care discussions early on in the disease trajectory may help to raise awareness about the socioemotional preferences of the person with dementia and their importance compared to the provision of care for the person with dementia. The perceived incongruence analyses revealed an unexpected finding related to PADLs. Specifically, higher levels of perceived incongruence for PADL preferences were related to better, not worse, quality of life and mood for the caregiver. As a preliminary attempt to make sense of this finding, we examined the clinical notes from several cases that exemplified this finding. Case notes indicated that several of the caregivers who reported higher quality of life and mood in addition to higher levels of incongruence worked during the day, had a family of their own, and indicated that they were considering placing the person with dementia in a long-term care facility. Thus, it is possible that perceived incongruence of PADL preferences in this study represents caregivers who are not negatively affected by these types of future care tasks because they have already considered the factors that exist in their own lives that do not permit them to provide care without formal help. That is, it may be the case that these caregivers see the use of professional PADL assistance as an option for the person with dementia, even though they believe that the person with dementia would prefer for them to help with these tasks. Conversely, caregivers who are resistant to utilizing outside help may be aligned with their loved one in terms of care preferences (both care partners prefer the caregiver to do everything), but the responsibility of actually providing assistance with all of these care tasks can become a major source of stress for the caregiver. It may also be the case that the process of perspective-taking on the part of the caregiver is associated with understanding the person with dementia’s experience of his/her illness. The ability to take the perspective of the person with dementia might contribute to the caregiver’s ability to recognize preference incongruence. It should be noted that these explanations are exploratory and speculative in nature, extending well beyond the scope of our a priori hypotheses and analyses. Unfortunately, our data do not allow for further analyses into these speculations. Future research on this topic may shed light on this anomalous finding. The finding that perceived incongruence is more strongly related to psychosocial well-being relative to actual incongruence has implications for care planning interventions. Specifically, if incorrect perceptions of preference incongruence (especially for those preferences related to socioemotional care tasks) can be rectified through structured care-related discussions early in the course of the disease, this may have a positive effect on well-being. Moreover, even if preferences differ between care partners, understanding and communicating these preferences may help to create a stronger network of understanding between the caregiver and the person with dementia. The communication and cooperation that is characteristic of care partners working together is reflected in the dyadic approach to intervention in dementia (Braun, et al., 2009; Judge, Yarry, & Orsulic-Jeras, 2010; Keady & Nolan, 2003; Whitlatch, Judge, Zarit, & Femia, 2006; Whitlatch, 2013; Yarry, Judge, Orsulic-Jeras, 2010). An increasing number of research studies have found efficacious results for dementia care management techniques built upon the inclusion of both the caregiver and the person with dementia in the care process. Existing dyadic interventions in dementia demonstrate increased communication and mutual understanding, leading to improvements in the relationship of the care partners, social well-being, and cognitive function of the person with dementia (for an overview, see Moon & Adams, 2013). However, nonpharmacological research in the field of dementia often focuses on either the caregiver or the person with dementia in isolation, rather than taking a dyadic perspective. Interventions for the person with dementia are often designed for the more advanced stages of the illness, well after the best opportunity to make plans and discuss preferences has passed. Interventions targeted for the early stages of dementia often under-emphasize or overlook the perspective of the person with dementia, focusing instead on improving caregiver mastery and resources (Braun et al., 2009). Conclusion This study examined the effects of actual and perceived care-related preference incongruence on quality of life, relationship strain, and mood for persons with dementia and caregivers. The implications of these findings indicate that socioemotional care-related preferences be included in early care planning discussions about dementia. Moreover, if these discussions can serve to rectify any false perceptions about care preferences, it may help to reduce the negative effects of such perceptions for the caregiver. This study is among the first to examine the relationship between psychosocial well-being and incongruent care preferences in dementia. A significant limitation of this study is the use of correlative data. It is difficult to understand fully whether preference incongruence has a direct impact on outcomes, or if another factor may be influencing both well-being and perceptions about preferences. For instance, behavioral problems may affect quality of life and lead a caregiver to believe that the Person with dementia’s preferences are not aligned with his or her own. Future studies should further examine the role of perceived incongruence, especially PADL incongruence, on well-being for the caregiver. Including the perceived incongruence of the person with dementia, as well as the accuracy of the perceptions of the care partner’s preferences (i.e., perceptions of the care partner’s preferences compared to his/her actual preferences) may help to further clarify care planning incongruence and its relationship to well-being. To better understand the nature of the relationship between incongruence and psychosocial outcomes, open-ended interviews with care partners and qualitative data analyses may be a fruitful direction for future research. This approach may reveal interpersonal aspects of the care role from the perspective of both partners that might not arise using more structured quantitative methodology. Due to the use of secondary data from a care planning intervention study, the sample was restricted to persons with dementia in the early stages (i.e., the “planning stage”) who did not yet require an extensive level of care. The impact of preference incongruence on the well-being of the caregiver and the person with dementia may be substantially different over the course of the entire illness. Thus, preference incongruence across the disease trajectory may be a lucrative direction for future research. Finally, future research should examine the impact of care preference discussions on perceived and actual preference incongruence, as well as outcomes such as those examined in this study. Funding This work was supported by The Administration for Community Living (formerly Administration on Aging), U.S. Department of Health and Human Services [90AI0400]. References Andersen C. K. Wittrup-Jensen K. U. Lolk A. Andersen K., & Kragh-Sørensen P. ( 2004). Ability to perform activities of daily living is the main factor affecting quality of life in patients with dementia. Health and quality of life outcomes , 2, 52. doi: 10.1186/1477-7525-2-52 Google Scholar CrossRef Search ADS   Aneshensel C. S. Pearlin L. I. Mullan J. T. Zarit S. H., & Whitlatch C. J. ( 1995). Profiles in caregiving: The unexpected career . San Diego, CA: Academic Press. Alzheimer’s Association. ( 2016). 2016 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia , 12( 4), 459– 509. doi: http://dx.doi.org/10.1016/j.jalz.2016.03.001 CrossRef Search ADS   Bass D. M. Tausig M. B., & Noelker L. S. ( 1989). Elder impairment, social support and caregiver strain: A framework for understanding support’s effects. Journal of Applied Social Sciences , 13, 80– 117. Braun M. Scholz U. Bailey B. Perren S. Hornung R., & Martin M. ( 2009). Dementia caregiving in spousal relationships: A dyadic perspective. Aging & Mental Health , 13( 3), 426– 436. doi: http://dx.doi.org/10.1080/13607860902879441 Google Scholar CrossRef Search ADS   Brod M. Stewart A. L. Sands L., & Walton P. ( 1999). Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). The Gerontologist , 39( 1), 25– 35. doi: http://dx.doi.org/10.1093/geront/39.1.25 Google Scholar CrossRef Search ADS   Carpenter B. D. Van Haitsma K. Ruckdeschel K., & Lawton M. P. ( 2000). The psychosocial preferences of older adults a pilot examination of content and structure. The Gerontologist , 40( 3), 335– 348. doi: http://dx.doi.org/10.1093/geront/40.3.335 Google Scholar CrossRef Search ADS   Carpenter B. D. Kissel E. C., & Lee M. M. ( 2007). Preferences and life evaluations of older adults with and without dementia: reliability, stability, and proxy knowledge. Psychology and Aging , 22( 3), 650– 655. doi: http://dx.doi.org/10.1037/0882-7974.22.3.650 Google Scholar CrossRef Search ADS   Clark P. A. Tucke S. S., & Whitlatch C. J. ( 2008). Consistency of information from persons with dementia; An analysis of differences by question type. Dementia , 7( 3), 341– 358. doi: http://dx.doi.org/10.1177/1471301208093288 Google Scholar CrossRef Search ADS   Dening K. H. Jones L., & Sampson E. L. ( 2011). Advance care planning for people with dementia: A review. International Psychogeriatrics , 23( 10), 1535– 1551. doi: http://dx.doi.org/10.1017/s1041610211001608 Google Scholar CrossRef Search ADS   de Boer M. E. Hertogh C. M. P. M. Dröes R.-M. Riphagen I. I. Jonker C., & Eefsting J. A. ( 2007). Suffering from dementia—the patient’s perspective: A review of the literature. International Psychogeriatrics International Psychogeriatric Association , 196, 1021– 1039. doi: http://dx.doi.org/10.1017/s1041610207005765 Etters L. Goodall D., & Harrison B. E. ( 2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners , 20( 8), 423– 428. doi: http://dx.doi.org/10.1111/j.1745-7599.2008.00342.x Google Scholar CrossRef Search ADS   Folstein M. F. Folstein S. E., & McHugh P. R. ( 1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research , 12( 3), 189– 198. doi: http://dx.doi.org/10.1016/0022-3956(75)90026-6 Google Scholar CrossRef Search ADS   Gaugler J. E. Davey A. Pearlin L. I., & Zarit S. H. ( 2000). Modeling caregiver adaptation over time: The longitudinal impact of behavior problems. Psychology and Aging , 15( 3), 437– 450. doi: http://dx.doi.org/10.1037//0882-7974.15.3.437 Google Scholar CrossRef Search ADS   Gauthier S. Cummings J. Ballard C. Brodaty H. Grossberg G., Robert P., & Lyketsos C. ( 2010). Management of behavioral problems in Alzheimer’s disease. International Psychogeriatrics/IPA , 22( 3), 346– 372. doi: http://dx.doi.org/10.1017/s1041610209991505 Google Scholar CrossRef Search ADS   Giebel C. M. Sutcliffe C., & Challis D. ( 2015). Activities of daily living and quality of life across different stages of dementia: A UK study. Aging & Mental Health , 19( 1), 63– 71. doi: http://dx.doi.org/10.1080/13607863.2014.915920 Google Scholar CrossRef Search ADS   Giebel C. M. Sutcliffe C. Stolt M. Karlsson S. Renom-Guiteras A. Soto M., … Challis D. ( 2014). Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: A European study. International Psychogeriatrics C International Psychogeriatric Association , 268, 1283– 1293. doi: http://dx.doi.org/10.1017/s1041610214000775 Google Scholar CrossRef Search ADS   Harman G., & Clare L. ( 2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research , 16( 4), 484– 502. doi: http://dx.doi.org/10.1177/1049732306286851 Google Scholar CrossRef Search ADS   Hawkins N. A. Ditto P. H. Danks J. H., & Smucker W. D. ( 2005). Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. The Gerontologist , 45( 1), 107– 117. doi: http://dx.doi.org/10.1093/geront/45.1.107 Google Scholar CrossRef Search ADS   Heid A. R. Zarit S. H., & Van Haitsma K. ( 2016). Older adults’ influence in family care: How do daughters and aging parents navigate differences in care goals? Aging & Mental Health , 20( 1), 46– 55. doi: http://dx.doi.org/10.1080/13607863.2015.1049117 Google Scholar CrossRef Search ADS   Judge K. S. Camp C. J., & Orsulic-Jeras S. ( 2000). Use of Montessori-based activities for clients with dementia in adult day care: Effects on engagement. American Journal of Alzheimer’s Disease and Other Dementias , 15( 1), 42– 46. doi: http://dx.doi.org/10.1177/153331750001500105 Google Scholar CrossRef Search ADS   Judge K. S. Yarry S. J., & Orsulic-Jeras S. ( 2010). Acceptability and feasibility results of a strength-based skills training program for dementia caregiving dyads. The Gerontologist , 50( 3), 408– 417. doi: http://dx.doi.org/10.1093/geront/gnp138 Google Scholar CrossRef Search ADS   Keady J., & Nolan M. ( 2003). The dynamics of dementia: Working together, working separately, or working alone. In M. Nolan U. Lundh G. Grant, & J. Keady (Eds.). Partnership in Family Care  (pp. 15– 32). Buckingham: Open University Press. Krestar M. L. Looman W. Powers S. Dawson N., & Judge K. S. ( 2012). Including individuals with memory impairment in the research process: The importance of scales and response categories used in surveys. Journal of Empirical Research on Human Research Ethics , 7( 2), 70– 79. doi: http://dx.doi.org/10.1525/jer.2012.7.2.70 Google Scholar CrossRef Search ADS   Logsdon R. G. Gibbons L. E. McCurry S. M., & Teri L. ( 1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging , 5( 1), 28– 36. Lyons K. S. Zarit S. H. Sayer A. G., & Whitlatch C. J. ( 2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences , 57( 3), 195– 204. doi: http://dx.doi.org/10.1093/geronb/57.3.p195 Google Scholar CrossRef Search ADS   Menne H. L., & Whitlatch C. J. ( 2007). Decision-making involvement of individuals with dementia. The Gerontologist , 47( 6), 810– 819. doi: http://dx.doi.org/10.1093/geront/47.6.810 Google Scholar CrossRef Search ADS   Moon H., & Adams K. B. ( 2013). The effectiveness of dyadic interventions for people with dementia and their caregivers. Dementia , 12( 6), 821– 839. doi: http://dx.doi.org/10.1177/1471301212447026 Google Scholar CrossRef Search ADS   Moyle W. Murfield J. E. Griffiths S. G., & Venturato L. ( 2012). Assessing quality of life of older people with dementia: A comparison of quantitative self‐report and proxy accounts. Journal of Advanced Nursing , 68( 10), 2237– 2246. doi: http://dx.doi.org/10.1111/j.1365-2648.2011.05912.x Google Scholar CrossRef Search ADS   Popham C., & Orrell M. ( 2012). What matters for people with dementia in care homes? Aging & mental health , 16( 2), 181– 188. doi: 10.1080/13607863.2011.628972 Google Scholar CrossRef Search ADS   Poppe M. Burleigh S., & Banerjee S. ( 2013). Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PloS ONE , 8( 4), e60412. doi: http://dx.doi.org/10.1371/journal.pone.0060412 Google Scholar CrossRef Search ADS   Prorok J. C. Horgan S., & Seitz D. P. ( 2013). Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal , 185( 14), e669– e680. doi: http://dx.doi.org/10.1503/cmaj.121795 Google Scholar CrossRef Search ADS   Reamy A. M. Kim K. Zarit S. H., & Whitlatch C. J. ( 2011). Understanding discrepancy in perceptions of values: Individuals with mild to moderate dementia and their family caregivers. Gerontologist , 51( 4), 473– 483. doi: http://dx.doi.org/10.1093/geront/gnr010 Google Scholar CrossRef Search ADS   Reamy A. M. Kim K. Zarit S. H., & Whitlatch C. J. ( 2013). Values and preferences of individuals with dementia: Perceptions of family caregivers over time. Gerontologist , 53( 2), 293– 302. doi: http://dx.doi.org/10.1093/geront/gns078 Google Scholar CrossRef Search ADS   Robinson L. Bamford C. Beyer F. Clark A. Dickinson C. Emmet C., … & Rousseau N. ( 2010). Patient preferences for future care-how can Advance Care Planning become embedded into dementia care: A study protocol. BMC geriatrics , 10( 1), 1. doi: http://dx.doi.org/10.1186/1471-2318-10-2 Google Scholar CrossRef Search ADS   Robinson L. Clare L., & Evans K. ( 2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health , 9( 4), 337– 347. doi: http://dx.doi.org/10.1080/13607860500114555 Google Scholar CrossRef Search ADS   Schulz R., & Martire L. M. ( 2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry : Official Journal of the American Association for Geriatric Psychiatry , 12, 240– 249. doi: http://dx.doi.org/10.1097/00019442-200405000-00002 Google Scholar CrossRef Search ADS   Sebern M. D., & Whitlatch C. J. ( 2007). Dyadic relationship scale: A measure of the impact of the provision and receipt of family care. The Gerontologist , 47( 6), 741– 751. doi: http://dx.doi.org/10.1093/geront/47.6.741 Google Scholar CrossRef Search ADS   van Soest-Poortvliet M. C. van der Steen J. T. de Vet H. C. Hertogh C. M. Deliens L., & Onwuteaka-Philipsen B. D. ( 2015). Comfort goal of care and end-of-life outcomes in dementia: A prospective study. Palliative Medicine , 29( 6), 538– 546. doi: http://dx.doi.org/10.1177/0269216315570409 Google Scholar CrossRef Search ADS   Vernooij-Dassen M. Vasse E. Zuidema S. Cohen-Mansfield J., & Moyle W. ( 2010). Psychosocial interventions for dementia patients in long-term care. International Psychogeriatrics/IPA , 22( 7), 1121– 1128. doi: http://dx.doi.org/10.1017/s1041610210001365 Google Scholar CrossRef Search ADS   Volandes A. E. Paasche-Orlow M. K. Barry M. J. Gillick M. R. Minaker K. L. Chang Y., … & Mitchell S. L. ( 2009). Video decision support tool for advance care planning in dementia: Randomised controlled trial. Medical Decision Making , 30( 1), 29– 34. doi: http://dx.doi.org/10.1136/bmj.b2159 Google Scholar CrossRef Search ADS   Whitlatch C. J. ( 2010). Assessing the personal preferences of persons with dementia. In Lichtenberg P. ( Ed.). Handbook of Assessment in Clinical Gerontology  (pp. 557– 580). Elsevier Publishing. doi: 10.1016/B978-0-12-374961-1.10021-1 Whitlatch C. J. ( 2013). Person-centered care in the early stages of dementia : Honoring individuals and their choices. Generations , 37( 3), 30– 37. Whitlatch C. J. Feinberg L. F., & Tucke S. ( 2005a). Accuracy and consistency of responses from persons with cognitive impairment. Dementia , 4( 2), 171– 183. doi: http://dx.doi.org/10.1177/ 1471301205051091 Google Scholar CrossRef Search ADS   Whitlatch C. J. Feinberg L. F., & Tucke S. ( 2005b). Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers. The Gerontologist , 45( 3), 370– 380. doi: http://dx.doi.org/10.1093/geront/45.3.370 Google Scholar CrossRef Search ADS   Whitlatch C. J. Judge K. Zarit S. H., & Femia E. ( 2006). Dyadic intervention for family caregivers and care receivers in early-stage dementia. The Gerontologist , 46( 5), 688– 694. doi: http://dx.doi.org/10.1093/geront/46.5.688 Google Scholar CrossRef Search ADS   Woods B. ( 1999). The person in dementia care. Generations , 23( 3), 35. Yarry S. J. Judge K. S., & Orsulic-Jeras S. ( 2010). Applying a strength-based intervention for dyads with mild to moderate memory loss: Two case examples. Dementia , 9, 549– 557. doi: http://dx.doi.org/10.1177/1471301210384315 Google Scholar CrossRef Search ADS   © The Author(s) 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

Journal

The GerontologistOxford University Press

Published: Jan 11, 2017

There are no references for this article.

You’re reading a free preview. Subscribe to read the entire article.


DeepDyve is your
personal research library

It’s your single place to instantly
discover and read the research
that matters to you.

Enjoy affordable access to
over 18 million articles from more than
15,000 peer-reviewed journals.

All for just $49/month

Explore the DeepDyve Library

Search

Query the DeepDyve database, plus search all of PubMed and Google Scholar seamlessly

Organize

Save any article or search result from DeepDyve, PubMed, and Google Scholar... all in one place.

Access

Get unlimited, online access to over 18 million full-text articles from more than 15,000 scientific journals.

Your journals are on DeepDyve

Read from thousands of the leading scholarly journals from SpringerNature, Elsevier, Wiley-Blackwell, Oxford University Press and more.

All the latest content is available, no embargo periods.

See the journals in your area

DeepDyve

Freelancer

DeepDyve

Pro

Price

FREE

$49/month
$360/year

Save searches from
Google Scholar,
PubMed

Create lists to
organize your research

Export lists, citations

Read DeepDyve articles

Abstract access only

Unlimited access to over
18 million full-text articles

Print

20 pages / month

PDF Discount

20% off