Dementia Caregivers' Most Pressing Concerns

Abstract

This primary-care-based study was designed to determine needs as identified by the informal caregiver. A total of 165 caregivers identified selected topics of concern. Depressed caregivers requested more information about depression, adult day care, grief, caregiver feelings, and relaxation. Caregivers of individuals with mild dementia requested more information on confusion, driving, patient depression, shadowing, telling the patient and others, grief, and depression. Behavioral (activities, combativeness, communication, confusion) and stress (healthy lifestyle, grief, relaxation, depression) needs were similar across race, gender, and relationship. However, the clinical characteristics of caregivers (depression) and care recipients (cognitive impairment severity) affected behavioral and stress and coping needs.

KEYWORDS:

• primary care
• Alzheimer's disease
• race
• needs assessment

INTRODUCTION

Research has suggested that interventions and services for dementia caregivers will be most salutary when caregiver feedback is included in the protocol. As early as 1990, when Fortinsky and Hathaway (1990) called for more “high-quality educational material” for Alzheimer's caregivers, they also called for the increased use of former dementia caregivers in the educational process—a kind of indirect involvement of caregiver input into the educational process. Some researchers have surveyed the opinions of caregivers about what they need most, but these studies have stopped short of providing an actual intervention (Wakerbarth & Johnson, 2002). Quinn (1996) reported success when incorporating regular feedback from both caregivers and care recipients into a work therapy program. Another attempt to incorporate caregiver feedback has been in the work of Wald and colleagues (Wald, Fahy, Walker, & Livingston, 2003), where, in an initial interview, caregivers prioritized the information they wanted. This content was provided to caregivers as it related to the stage of dementia suffered by the care recipient. Farran and colleagues (Farran, Loukissa, Perraud, & Paun, 2003; Farran, Loukissa, Perraud, & Paun, 2004), in their qualitative, feedback-based approach, allowed for an analysis that could sort through the pragmatic skills most needed by caregivers (e.g., skills involving personal activities of daily living).

Yet, the problem goes beyond simply asking caregivers what they need to know about dementia and then educating them. Both care recipient behavioral and caregiving stress and coping topics are important for caregivers (Burns et al., 2003; Donaldson & Burns, 1999; Ory, Yee, Tennstedt, & Schulz, 2000; Peacock & Forbes, 2003), and interventions tailored to caregivers' unique needs have been shown to improve quality of life and depression among caregivers (Belle et al., 2006). The work of Mittlelman and colleagues suggests, however, that caregivers do not always know enough about their role to request the most pertinent information or training (Mittelman et al., 1993; Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996).

These issues are particularly critical in primary care. The primary care provider is often the first, and sometimes the only, health care contact for the Alzheimer's patient and caregiver (Fillit, Knopman, Cummings, & Appel, 1999a, 1999b). However, for dementia caregivers and primary care physicians, identifying issues of concern can be a difficult process (Alzheimer's Association, 2001). Physicians are often frustrated by caregivers' needs, and caregivers may not always be able to articulate these needs (Burns et al., 2003). In addition, some researchers (Caron, Pattee, & Otteson, 2000; Montgomery & Kosloski, 2000; Wald et al., 2003) have suggested that an emphasis on the stages of caregiving, rather than on stages of dementia, better equips health workers to address caregiver needs.

To combine necessary information with caregiver choice, we provided a primary care intervention at the University of Tennessee–Memphis site of the NIA-NINR–funded Resources for Enhancing Alzheimer's Caregiver Health (REACH) program, focusing on topics shown to be useful for caregivers, while being responsive to caregivers' needs and wants (Burns, Nichols, Martindale-Adams, & Graney, 2003). Using Lazarus and Launier's (1978) environment-focused stress and coping model (which de-centers the notion of stress being located solely within the individual, and additionally focuses on actions an individual can take to alter a stress-inducing environment), behavioral and stress topics were identified, and materials were developed to address these topics. Caregivers were consulted at the start of each intervention encounter as to the topic of chief concern at that time. Caregivers could select a topic repeatedly, as different suggestions were tried. Topics were presented in a list of possible choices to alert each caregiver about any gaps in his or her knowledge.

Major outcomes of the intervention have been published elsewhere (Burns, Nichols, Martindale-Adams, & Graney, 2003). However, the design of topics and material, coupled with caregiver choice about which topics to access, provided information about a rarely studied issue: What topics are most important to caregivers? We also analyzed several other questions of interest, including which topics have immediate priority, which have ongoing high priority, and whether different kinds of caregivers express a need for different topics. Because our research had shown that interventions can have differential effects for caregivers of different racial/ethnic groups and relationships (Belle et al., 2006), we were particularly interested in whether demographic characteristics (race, gender), caregiving characteristics (relationship, length of caregiving), or clinical characteristics of the caregiver (depression) or the care recipient (dementia severity) would influence caregivers' needs for information.

METHODS

This study was a secondary analysis of data collected at the Memphis site of the Resources for Enhancing Alzheimer Caregiver's Health (REACH) study. REACH was a six-site feasibility trial, funded by the National Institute of Aging (NIA) and the National Institute of Nursing Research (NINR) from 1995 to 2000 to examine various interventions targeting caregivers of patients with Alzheimer's disease. The Memphis study was approved and monitored by the University of Tennessee and VA Medical Center Institutional Review Boards.

Sample

The design for the Memphis component of the REACH study was a primary-care–based, 2-year randomized trial targeting Black/African-American and White/Caucasian caregiver–care recipient dyads. Memphis caregivers and care recipients were recruited from 14 physicians' offices. Caregivers were over 21 years of ages, lived with the care recipient, and provided a minimum of 4 hours of supervision or direct care per day for at least the past 6 months. Caregivers were excluded if they were enrolled in another caregiver study or if they or their care recipients had a terminal or severe illness or disability that would prohibit them from participating in the study.

Care recipients had a medical diagnosis of probable ADRD, or scored < 24 on the Mini-Mental State Exam (MMSE) (Folstein, Folstein, & McHugh, 1975), and had at least one limitation in basic activities of daily living (ADL) (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963) or two dependencies in their instrumental activities of daily living (IADL) (Lawton & Brody, 1969) as reported by the caregiver.

Intervention

Across the 2-year intervention period, during the regularly scheduled primary care visit for the care recipient, caregivers in the intervention groups worked with a trained health interventionist on behavior management of the care recipient (Behavior Care Intervention), or behavior management plus management of their own stress (Enhanced Care Intervention). Of the 165 caregivers enrolled, 77 received the Behavior Care intervention with behavioral material only, and 88 received the Enhanced Care intervention with behavioral and stress/coping material. Thus, all 165 caregivers received behavior information while only 88 received stress/coping information.

During each session with the interventionist, caregivers would identify and select a topic to discuss, in addition to providing an update on problems and topics discussed at any previous session. Behavior Care used 25 pamphlets addressing particular behaviors (e.g., wandering, bathing, combativeness); Enhanced Care used, in addition, 12 pamphlets on caregiver stress/coping and improving the caregiver's own well-being (e.g., grief, assertiveness, communication). All pamphlets were written at a fifth grade reading level, with large print. They were based on a sampling of best practices from aging, nursing, and psychology theory and practice; the work of dementia-focused groups and organizations, such as the national Alzheimer's Disease and Related Disorders Association; and, the Office of Geriatrics and Extended Care, Veterans Health Administration, Department of Veterans Affairs. If a caregiver did not indicate a particular behavioral problem, Activities (identifying and modifying activities to keep the care recipient active) was recommended. The default stress/coping topic was Healthy Lifestyle (stress-reducing lifestyle tips, such as exercise, nutrition, time for self).

Data

Data collection

For this secondary analysis, baseline caregiver and care recipient information was used. These data were collected by masters-prepared research specialists who were masked to intervention assignment. Data on topic selection were recorded by the masters-prepared interventionists at each of the intervention sessions, which occurred approximately every 3 months for the 2-year duration of the active intervention.

Caregiver data

Caregiver demographic data included age, sex, race, education, marital status, income, duration of caregiving, and relationship. Caregiver affect was assessed using the Center for Epidemiological Studies Depression scale (CES-D) (Radloff, 1977). The CES-D is a 20-item measure that assesses the frequency with which respondents have experienced depressive symptoms within the past week. Items are scored from 0 (rarely or none of the time) to 3 (most or almost all of the time). Items are summed for an overall score of 0 to 60, with higher scores indicating greater depressive symptoms. A CES-D score of 16 or over has been clinically associated with a greater risk for depression (Radloff & Teri, 1986). Therefore, we used this CES-D ≥ 16 cutpoint to examine the proportion of individuals at greater risk of depression.

Care recipient data

Patient demographic data included age, sex, race, and education. The patient's cognitive status was assessed using the MMSE, a 30-point scale used to assess orientation, short-term memory, visual construction, and language skills (Folstein, Folstein, & McHugh, 1975). Higher MMSE scores indicate better cognitive abilities. Care recipient functional status was assessed using the six-item Katz ADL scale (Katz et al., 1963) and the eight-item Lawton and Brody IADL scale (Lawton & Brody, 1969). Each item was scored 0 (no help needed) or 1 (help needed). ADL and IADL scores were created by summing scores across the items, with higher scores indicating greater functional impairment.

Data analysis

Demographic and clinical characteristics of caregivers and care recipients were computed for the sample. Data analysis was designed to examine topics selected by caregivers over the duration of their participation in the study. Measures of the frequency of topic selection reflect the number of caregivers who selected a topic at least once. Repeated requests for the same topic are not reflected in measures of frequency. Demographic and clinical characteristics of caregivers and their care recipients were compared between different demographic and clinical groups using chi-square tests for contingency tables, or independent-samples t-tests, as appropriate. A p value ≤ .05 was considered statistically significant.

RESULTS

A total of 165 caregiver dyads were part of the study. Among caregivers, 78.4% were women, and 38.3% were Black/African-American. Care recipients were, on average, 15 years older than caregivers (80.5 years), most were female (55.1%), and most were severely demented. Demographic characteristics are shown in Table 1 and Table 2.

TABLE 1 Characteristics of caregivers (N = 165)

Characteristic	Value
Age (years)	64.7 (13.5)
Sex (% female)	78.4
Race (% black)	38.3
Marital Status (% married)	70.7
Income ($K)	25.0 (15.0)
Education (0–17 years)	12.9 (2.5)
Relationship (%)
Spouse	50.3
Child	34.7
Other	15.0
Caregiving (years)	4.1 (3.9)
CES-D (0–60)	13.0 (10.9)
Notes: Subject characteristics are M (SD) or percent.
CES-D = Center for Epidemiological Studies Depression Scale.

TABLE 2 Characteristics of care recipients (N = 165)

Characteristic	Value
Age (years)	80.5 (7.9)
Sex (% female)	55.1
Race (% Black)	39.5
Education (0–17 years)	10.6 (3.6)
ADL (0–6)	3.2 (2.0)
IADL (0–8)	7.4 (1.1)
MMSE (0–30)	11.3 (7.1)
Notes: Subject characteristics are M (SD) or percent.
ADL and IADL = Activities of Daily Living and Instrumental ADL;
MMSE = Mini-Mental State Exam.

Topic Selection by Caregivers

Among the behavioral topics, the default topic of Activities was the most reviewed, being requested by more than a third of all participants. Combativeness, Confusion, and Communication were each selected by over one quarter of all caregivers, as shown in Table 3. The least requested topics were those concerning Visiting with the Care Recipient, Hospitalization, Care Recipient Sexuality, and Holidays (focusing on the care recipient). On average, each caregiver discussed 3.2 behavioral topics. However, a topic could be repeatedly discussed and the top four behavioral pamphlets were discussed, on average, 4.8 times (range, 1 to 15 times), with Combativeness being selected the most often.

TABLE 3 Behavior topics selected by caregivers (N = 165)

Topic	% Requesting	Topic	% Requesting
Activities	34.6	Environmental Safety	9.7
Combativeness	28.5	Traveling	9.7
Communication	26.1	Shadowing	8.5
Confusion	26.1	Telling the Patient/Others	7.9
Eating	18.8	Depression (CR)	7.3
Incontinence	18.2	Dental Care	6.7
Nutrition	15.8	Driving	6.7
Wandering	15.8	Medications	5.5
Bathing	13.9	Hospitalization	4.9
Feelings (CR)	12.7	Visiting	4.9
Sleeping	12.7	Sexuality (CR)	3.0
Hallucinations	11.5	Holidays (CR)	2.4
Dressing	10.9
Note: CR = care recipient.

Among caregivers receiving Enhanced Care, the default topic of Healthy Lifestyle was the most reviewed topic—selected by half of caregivers, as shown in Table 4. The other most requested topics included Grief, Relaxation, and Caregiver Depression, all of which were requested by about one fifth or more of the Enhanced Care caregivers. The least requested topics in Enhanced Care were Assertiveness, Holidays (focusing on the caregiver), Making Friends, and Problem Solving. Caregivers in Enhanced Care discussed, on average, 1.6 stress and coping topics. The stress and coping topics could also be repeatedly discussed and the top four stress and coping pamphlets were discussed, on average, 3.9 times, with a range of 1 to 10 times, with Grief being selected most frequently.

TABLE 4 Stress and coping topics selected by caregivers (N = 88)

Topic	% Requesting	Topic	% Requesting
Healthy Lifestyle	50.0	Positive Thinking	4.6
Grief	23.9	Sexuality (CG)	4.6
Relaxation	22.7	Assertiveness	3.4
Depression (CG)	19.3	Holidays (CG)	3.4
Adult Day Care	14.8	Making New Friends	3.4
Feelings (CG)	12.5	Problem Solving	1.1
Note: CG = caregiver.

Also of interest was the relative initial selection of each topic, that is, the number of times a topic was a caregiver's first choice for discussion. In these terms, Incontinence was chosen first by more than one fifth of all caregivers, being selected almost three times more often than the next first choice, Eating.

Topic Selection by Caregivers of Different Genders, Races, and Relationships

The four most selected behavioral topics overall (Activities [the default topic], Combativeness, Communication, and Confusion) were generally the most selected in each of the six demographic groups (Black/African American/White/Caucasian, male/female, and spouse/non-spouse). Similarly, the overall top four stress/coping topics (Healthy Lifestyle [the default topic], Grief, Relaxation, and Caregiver Depression) were generally the most selected in each demographic group.

There were some trends among the demographic groups, although none were statistically significant. The use of Healthy Lifestyle (the default topic) was between 51 to 56% for each demographic group except men, who requested that topic almost 69% of the time. The percentage of men who requested help with Care Recipient Eating (32.3%) was twice that of women (15.3%). The percentage of spouses who requested help with Grief (34.2%) was twice that of non-spouses (17.1%). The percentage of spouses who requested help with dealing with their Feelings (19.5%) was almost three times that of non-spouses (7.3%). In contrast, the percentage of non-spouses who requested information on Dressing the Care Recipient (16.3%) was almost three times that of spouses (5.9%). Finally, the percentage of White/Caucasians who requested help with Wandering (20.8%) was twice that of Black/African Americans (9.8%).

Topic Selection by Depressed and Non-Depressed Caregivers

Behavioral issues were similar for the 56 depressed caregivers with CES-D scores ≥ 16, and for the 109 caregivers who were not depressed. However, stress and coping topics selected by depressed caregivers and non-depressed caregivers tended to be dissimilar, although the differences were not statistically significant. There were 79 caregivers with access to stress and coping topics, and of these, 25 were depressed caregivers. Depressed caregivers, compared with non-depressed caregivers, were almost three times more likely to ask about Adult Day Care (28.0% vs. 11.1%.), and about twice as likely to request information on Caregiver Feelings (20.0% vs. 9.3%).

Topic Selection by Caregivers of Care Recipients with Mild and Moderate/Severe Dementia

Neither behavioral nor stress issues were similar for caregivers of family members with mild dementia (MMSE = 18 to 23) versus those caring for those with moderate/severe dementia (MMSE = <18). Compared with the 122 caregivers of care recipients with more advanced dementia, the 38 caregivers of care recipients with mild dementia were more likely to request the following behavioral topics: Confusion (37.8% vs. 11.8%, χ² = 4.502, df = 1, p = .034), Driving (18.9% vs. 2.5%, χ² = 12.599, df = 1, p = .002), Care Recipient Depression (16.2% vs. 5.0%, χ² = 4.936, df = 1, p = .026), Shadowing (16.2% vs. 5.9%, χ² = 3.922, df = 1, p = .048), and Telling the Patient and Others (about the diagnosis) (18.9% vs. 5.0%, χ² = 3.922, df = 1, p = .014).

For stress issues, the 17 caregivers of care recipients with mild dementia were almost three times as likely to request help in dealing with Grief (41.2%) compared with the 60 caregivers of care recipients with more advanced dementia (15.0%). This difference was significant (χ² = 5.514, df = 1, p = .019). Caregivers of care recipients with mild dementia were also more than twice as likely to request help in dealing with Caregiver Depression (35.3%) compared with care recipients with more advanced dementia (15.0%), although this difference was not statistically significant.

Finally, there were no statistically significant differences in behavioral or stress and coping topic requests between those who were new caregivers (≤ 2 years) and those who had been caregivers for more than 2 years.

CONCLUSIONS

This study complements intervention research that aims to delineate caregiver needs more carefully. To our knowledge, this was the first primary care intervention study in which caregivers themselves drove the topic selection process, and in which the details of these choices were closely tabulated for later analysis. The innovation of the Memphis-based REACH I primary care intervention was to systematically design caregiver feedback into the intervention protocol itself and to categorize this information. Caregivers were consulted at the start of each intervention encounter as to the topic of chief concern at that time. At the same time, interventions were not devoid of directed content, as topics were presented in a list of possible choices, thus giving each caregiver a sense of any gaps in his or her knowledge.

As noted above, the analysis of topics requested by caregivers in group support sessions by Farran et al. (2003, 2004) also brings our view of caregiver intervention needs into focus. Although their work, based on analysis of group leader reports, outlined the themes of greatest importance to caregivers (e.g., “behavioral approaches,” “emotional support,” “family issues”), and offered many detailed examples for each, we believe a stricter accounting of specific topics and strategies is also necessary. Thus, although Farran et al. note that most caregivers were more concerned with discussing activities of daily living (ADL—bathing, dressing, toileting, etc.) than instrumental activities of daily living (IADL—paying bills, shopping, etc.), our data provide a more subtle portrait.

After an initial greater interest in Incontinence, or Eating (two ADLs), our caregivers most often chose, over the long term, topics considered more related to emotional or interpersonal aspects of care recipient behavior: guiding Activities, avoiding Combativeness, decreasing Confusion, and enhancing Communication. These, we believe, address the fundamental motivation for caregivers to care for the care recipient in their home—enhancing daily quality of life. While the urgency of addressing stressors such as Incontinence is initially great, such problems may be of secondary importance to the goal of remaining connected to the care recipient as a person (Caron & Bowers, 2003).

The difference between the most and least selected stress/coping topics was also revealing. Studies by Farran and colleagues (2003, 2004) found what our own interventions confirmed: familial relationships play a crucial role in shaping the caregiving experience and a caregiver's response to the care recipient's behavior. Yet, the most common stress/coping topics for subjects receiving Enhanced Care were individualized emotional issues: Grief, Relaxation, and Caregiver Depression. Among the least selected topics in this area were those that deal with improving social relationships: Assertiveness, Holidays, and Making Friends. This may reflect caregivers' lack of time, or the importance of a caregiver's most intense social relationship—the relationship with the care recipient.

Our data also suggest the problem of caregiver reluctance to discuss issues. As noted, more than half of all Enhanced Care subjects discussed Healthy Lifestyle, which is an important topic because caregivers tend to neglect their own health. However, it was also the default topic and may reflect hesitancy by caregivers, particularly men, to address more sensitive issues, at least initially. The relative lack of interest in the care recipient Sexuality topic may also be alerting us to the delicacy of the issues we see as important: although the more emotional topics may be of great importance, the intervention environment which must be cultivated to address such issues must be personalized and the contact more frequent than our study design allowed.

As for addressing the needs of diverse caregivers, despite differences found in how caregivers perceive the caregiving process (Connell & Gibson, 1997), the most striking feature of our analysis was the similarities of interests even among contrasting demographic groups. However, in terms of race, we only examined Black/African American and White/Caucasian racial groups. The contrasts we did find may point out some promising directions for future research—for example, men's greater concern with eating, or the greater need by non-spouses for help with dressing. These may reflect areas of unfamiliarity (serving food for men) or discomfort (dressing a parent for children). Spouses' greater interest in grief and dealing with their feelings may reflect the changes occurring in their long-standing marital relationship. But for now, these must remain speculations until they are clarified with further research.

Differences in caregiver needs are clear when we examine clinical characteristics of both caregivers and care recipients. Depressed caregivers, although dealing with the same behavioral topics, struggle more with stress and coping issues than do caregivers who are not depressed. Depressed caregivers were more likely to request information on Adult Day Care, and Caregiver Feelings than non-depressed caregivers. Our research has shown that caregivers who do not receive assistance with their own stress and coping issues are more at risk for adverse outcomes (Burns, Nichols, Martindale-Adams, & Graney, 2003). The selection of topics by depressed caregivers and, conversely, the infrequent selection of these same topics by non-depressed caregivers, suggest what we know clinically, that depressed caregivers need additional support.

As has been shown by Wald and colleagues (2003), caregiver needs are also related to the stage of dementia. Caregivers of family members with mild dementia, compared with those caring for those with moderate/severe dementia, requested information on a wider variety of topics. The behavioral topics reflect the life changes and behavioral disturbances that are found in early dementia: Confusion, Care Recipient Depression, Driving, Shadowing, and Telling the Patient and Others. Caregivers of persons with mild dementia requested information on Grief and Caregiver Depression 2 to 3 times more often than those caring for persons with moderate/severe dementia, perhaps reflecting their efforts to assimilate the changes brought into their lives by dementia. However, we did not find significant differences by length of time caregiving.

Our study had several limitations. This study reports on a secondary analysis that was not part of our original hypotheses. Given our sample size (165 caregivers) and the large number of topics available for caregivers to choose from, we believe some of our findings have clinical significance, even though they did not reach statistical significance. Another limitation concerns the Activities and Healthy Lifestyle topics. If caregivers were hesitant to choose a topic, these were the default topics in their respective areas, so their selection was artificially inflated. Finally, the majority of our care recipients had significant cognitive impairment and caregivers had been providing care for an average of four years. These two factors may have influenced which topics caregivers chose.

This study has expanded our knowledge about the delicate balance of the caregiving role and the individual needs of the caregiver. The critical finding from our study is that the involvement of the caregiver in selection of educational information is important in helping educate the caregiver about relieving stress or improving the care they provide. Furthermore, clinical characteristics of both the caregiver and care recipient appear to influence selection of educational areas for the caregiver. As the primary care provider is usually the first health care professional to whom Alzheimer's patients and their caregivers turn (Fillit et al., 1999a, 1999b), promoting interventions in this setting may achieve the greatest impact for the cost. Moreover, enlistment of the caregiver may help improve clinical outcomes in both clinical practice and future intervention research.

Acknowledgments

This research was part of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) project, which was supported by the National Institute on Aging and the National Institute of Nursing Research (Grant: U01-AG13313). It was also supported in part by the Office of Research and Development, Department of Veterans Affairs, and the Memphis VA Medical Center. Our thanks to Barbara Higgins, MA, and Juliana Lindenberg, M.Div, for assistance with data collection and intervention. We also want to thank our caregivers for providing excellent care to their family members and for finding the time to participate in this study.