FEATURE
Information Needs of Family Caregivers of People With Dementia
Victoria Steiner1, PhD, Linda L. Pierce2, PhD, RN, CNS, CRRN, FAHA, FAAN & Diane Salvador 2, PhD, RN 1 College of Medicine and Life Sciences, The University of Toledo, Toledo, OH, USA 2 College of Nursing, The University of Toledo, Toledo, OH, USA
Keywords
Abstract
Caregivers; cognitive; education; information needs. Correspondence Victoria Steiner, University of Toledo, 3015 Arlington Avenue, Mailstop 1027, Toledo, OH 43614. E-mail: [email protected] Accepted February 4, 2015. doi: 10.1002/rnj.214
Purpose: Understanding caregiver needs is essential when caring for people with dementia. The aim of this study was to identify family caregivers’ information needs as perceived by home care workers and the caregivers themselves. Design: This study used a descriptive survey design and convenience sampling. Methods: The two groups of care providers were given a list of 48 items and asked to choose caregivers’ top 10 information needs. Findings: Group 1 (n = 33 unpaid family caregivers) identified dealing with behavior changes and group 2 (n = 59 paid home care workers) identified providing personal care as most important. Conclusion: While differences between these groups emerged, both care providers chose more items related to needing help for the care recipient, than items related to needing help for the caregivers themselves, e.g., support group. Clinical Relevance: These information needs can be used by rehabilitation nurses and other healthcare professionals to develop educational materials and supportive interventions.
Introduction Alzheimer’s disease currently affects more than 5 million individuals in the United States. People with Alzheimer’s disease require around-the-clock care, lasting, on average, 7–8 years from the time of diagnosis (Alzheimer’s Association, 2014). The changes in a loved one’s personality and mental abilities; the need to provide constant, loving attention for years; and the demands of bathing, dressing and other caregiving duties, take a tremendous physical and emotional toll on family caregivers who provide a majority of this care (Alzheimer’s Disease Education and Referral Center [ADEAR], 2008). It has long been known that caregivers of people with Alzheimer’s disease report
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spending more time providing care than caregivers of family members with other chronic conditions. These family members experience poorer health (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; Haley, Roth, Howard, & Safford, 2010), increased levels of anxiety and depression (Cannuscio et al., 2002; Mahoney, Regan, Katona, & Livingston, 2005), and increased burden (Mack & Friedland, 2005; Torti, Gwyther, Reed, Friedman, & Schulman, 2004). Many caregivers are themselves older adults taking care of aging spouses or parents (Alzheimer’s Association, 2014). Caring for a person with Alzheimer’s disease or related dementia often results in the family caregiver being homebound and less able to take advantage of resources or ser-
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vices that might exist (Morgan, Semchuk, Stewart, & D’Arcy, 2002; Wright, Lund, Pett, & Caserta, 1987). Other caregivers live in rural or underserved areas, where no resources or services are available. Consequently, family members of people with dementia often do not receive adequate information or consultation about the disease, treatments, and community services, and feel abandoned by healthcare providers (Beisecker, Chrisman, & Wright, 1997; Connell & Gallant, 1996; Teel & Carson, 2003). This isolation interferes with the effectiveness of treatments for dementia and other coexisting health conditions (Menzin, Lang, Friedman, Neumann, & Cummings, 1999), and may lead to more costly hospital stays (Gottlieb, 1999; Lyketsos, Sheppard, & Rabins, 2000). Future population projections suggest that families will continue to be the principal source of support for people with dementia and that the home will remain the predominant setting for dementia care (Alzheimer’s Association, 2014; Czaja, Eisdorfer, & Schulz, 2000; Wahl & Gitlin, 2003). As family members provide the majority of care for people with dementia, they are an essential resource for that person, as well as an asset to the healthcare system. Understanding of, and attention to, unpaid family caregiver needs and challenges are therefore vital aspects of caring for the person with dementia. These family caregivers, with the assistance of paid caregivers such as home health aides, home care workers, and personal care attendants, form the core of the home care system, providing assistance with activities of daily living and the personal interaction that is essential to quality of life and quality of care for people with chronic conditions such as dementia (Pierce & Lutz, 2013). For example, these trained personnel provide services that include monitoring the person with dementia and caregiver’s health status and performing various skills (e.g., taking vital signs or changing wound care dressings or catheters) under the supervision of licensed professionals (e.g., physicians or rehabilitation nurses), as well as providing respite and homemaking support. All professional providers can work more effectively with and give direction to these family caregivers of people with dementia and unlicensed staff by being aware of caregivers’ issues that results in information needs. The aim of this study was to identify family caregivers’ information needs as perceived by home care workers and the caregivers themselves. Literature Review Several studies in the past decade have focused on the information needs of family caregivers’ of people with © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
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dementia in the United States and serve as exemplars. Wackerbarth and Johnson (2002) surveyed caregivers (n = 128) and discovered that their most important needs were related to legal, financial, and diagnosis and treatment information. Edelman, Kuhn, Fulton, and Kyrouac (2006) also surveyed caregivers (n = 100) and found the top areas of interest to be on information about Alzheimer’s disease (e.g., stages and symptoms, treatments, and genetic aspects) and topics concerning day-to-day care (e.g., coping with symptoms and communicating with the care recipient). In a study examining a behavioral care intervention, Nichols et al. (2009) found that caregivers (n = 165) requested information on the topics of activities, combativeness, confusion, and communication. However, caregivers of people with mild dementia (n = 38) were more likely to request information on topics like confusion, driving, and patient depression as compared with caregivers of people with advanced dementia (n = 122). No studies in the past decade in the United States were found that reflect information needs of family caregivers of people with dementia from the paid caregivers’ perspective; however, three articles from other countries with different healthcare systems were discovered. In the United Kingdom, Cooper and Urquhart (2005) found that family carers (n = 7) asked for more information than they had in the past and that home care workers (n = 47) were expected to respond to a wide variety of inquiries about health, welfare, leisure, and domestic concerns. A study conducted by Vernooij-Dassen, Van Hout, Hund, Hoefnagels, and Grol (2003) evaluated the type of information provided in a memory clinic in the Netherlands to people with dementia and their caregivers (n = 51 dyads) following diagnosis of dementia. Specific information about behavior and professional care was given more frequently when people with dementia had more cognitive, behavioral, or instrumental activities of daily living problems and caregivers had a lower sense of competence. The results of this study, however, did not elucidate the specific information needs of these caregivers, but focused on ways of improving how healthcare providers inform people of this diagnosis. In a more recent study in the United Kingdom by Miranda-Castillo, Woods, and Orrell (2013), people with dementia and their caregivers’ (n = 150) met and unmet needs were compared with professionals’ (n = 152) ratings. The most frequent unmet needs reported by people with dementia, caregivers, and professionals were in the areas of daytime activities, company (loss of meaningful activities and relationships), and psychological distress.
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This study used a descriptive survey design to identify the information needs of unpaid family caregivers of people with dementia as perceived by home care workers and the caregivers themselves.
help they needed for themselves such as joining a support group or managing stress. Demographic questions were included in the survey to describe the subjects. An evaluation form, used in prior work with stroke caregivers (Pierce, Rupp, Hicks, & Steiner, 2003), was amended for use in documenting feedback regarding the survey. The survey was independently reviewed by experts in the field (six registered nurses and social workers with master’s degrees) to establish content validity. After review of the comments, changes were made to the survey, which included adding items to those listed on the survey (e.g., “alcohol consumption” was added to “managing his/her smoking”), and changing the wording of items to simplify the language or eliminate medical jargon. On the finalized survey, unpaid family caregivers were asked to choose from the list of 48 items, the top 10 needs they have experienced, now or in the past, when caring for a person with memory problems. Paid home care workers were asked to choose the top 10 needs they perceive caregivers experience in caring for someone with memory problems. At the end of the survey, respondents were encouraged to write any needs that were not listed.
Subjects
Procedure
The first group of subjects consisted of 33 adult unpaid family caregivers who attend support or education groups sponsored by the local chapter of the Alzheimer’s Association. The second group of subjects consisted of 59 paid home care workers from two local agencies who interface with people with dementia and caregivers in their homes. All subjects resided in northwestern Ohio or southeastern Michigan that includes urban, suburban, and rural areas.
Following Institutional Review Board approval, family caregivers attending support or education groups of the local chapter of the Alzheimer’s Association were given the survey and a cover letter explaining the study. They were given the option to complete the survey immediately or to complete the survey at home and return it in a sealed envelope to the local chapter. The two home care agencies mailed the surveys and cover letter to their employees, or passed them out with their paychecks. The completed surveys were returned or mailed to the home care agency in a sealed envelope. A research team member picked up the completed surveys at both locations. Subjects’ consent was implied upon completion of the survey.
In several of the studies discussed, results were not clearly separated between caregiver and care recipient information needs. In addition, many samples were from only one location and were not randomly selected from the population and thus may not be representative. Nonetheless, these studies help to understand the information needs of unpaid family caregivers in caring for people with dementia. This study contributes to the previous work by using a more comprehensive, focused survey approach to identifying these caregivers’ reported information needs. In addition, this study considers the perspective of paid home care workers in identifying family caregiver information needs. Method Design
Measure No survey instrument existed to assess caregiver information needs. Consequently, a survey was developed by a member of the university research team, based on a review of the literature and nursing practice experience. The instrument was verified for face validity by members of the research team. The first three authors and members of this team are professionals with years of experience in caring for people with dementia and their families. All team members collaborated to review and finalize the survey. The survey contained a list of items dealing with help family caregivers need in caring for people with memory problems. Examples include giving medications or medical treatments, dealing with behaviors such as wandering, or
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Table 1 Means of the demographic characteristics for the unpaid family caregivers and the paid home care workers
Characteristics
Family Caregivers (N = 33) M
Home Care Workers (N = 59) M
Age (years) Years of schooling Time caring (months)
62.2 13.4 38.6
44.8 13.8 57.0
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Table 2 Frequencies of the demographic characteristics for the unpaid family caregivers and the paid home care workers
Characteristics Gender Ethnicity
Relationship of the person for whom they are caring
Health status
Family Caregivers (N = 33) Frequency
Home Care Workers (N = 59) Frequency
29 Female 4 Male 31 White 1 Black 1 Asian or Pacific Islander 0 Hispanic origin 0 American Indian or Alaska Native
54 Female 5 Male 48 White 7 Black 2 Asian/Pacific Islander 1 Hispanic 1 American Indian/Alaska Native 0 Other or unknown
0 Other or unknown 2 Wife 9 Husband 14 Mother 4 Father 0 Brother 0 Sister 1 Friend 3 Other 4 Excellent 14 Very good 8 Good 5 Fair 2 Poor
Job title
8 Nurses 18 Nurse aides 26 Trained in-home caregivers 0 Social workers 6 Other 1 Missing
Findings The subjects who were unpaid family caregivers were primarily White females caring for their mothers, with a mean age of 62 years (see Tables 1 and 2). On average, they had been caring for the person for dementia for 3¼ years, had completed 13 years of schooling, and reported their health as good or better. The subjects who were paid home care workers were mostly White females who were nonprofessionals and either nurse aides or trained in-home caregivers, with a mean age of 45 years (see Tables 1 and 2). On average, they had been working with dementia clients for 4¾ years and had completed 14 years of schooling. © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
Table 3 Top 10 information needs chosen by unpaid family caregivers of people with dementia (N = 33) Information Needs
Frequency
%
Dealing with the care recipient’s forgetfulness/confusion Dealing with the care recipient repeating questions/actions Managing the caregiver’s stress Dealing with care recipient losing, hiding, or taking things Dealing with the care recipient’s loss of a sense of time Dealing with the care recipient seeing/ hearing things not there Assuming new caregiver roles and responsibilities Dealing with caregiver’s changing relationship with the care recipient Dealing with the care recipient’s stubbornness/uncooperativeness Managing the caregiver’s emotions
30
91
20
61
19 15
58 45
14
42
14
42
14
42
14
42
13
39
13
39
The top information needs identified by the unpaid family caregivers dealt mostly with behavior changes seen in the person for whom care was provided; more than 50% of the caregivers’ responses included information needs dealing with behavior problems. The most frequently identified information needs were dealing with forgetfulness/confusion (91%), repeating questions/actions (61%), losing, hiding, or taking things (45%), and a loss of sense of time (42%). Caregivers also identified a need for more information on managing their own stress (58%). The top 10 information needs identified by the family caregivers are listed in Table 3. The top information need identified by the paid home care workers was providing personal care (bathing, dressing, grooming) for the care recipient (61%). Although the top needs identified by the unpaid home care workers also concentrated on dealing with behaviors of the care recipient, the types of behaviors that they chose were different from those of the caregivers. Both caregivers and home care workers identified a need for more information on forgetfulness/confusion (91% and 49%, respectively), but home care workers also identified information on stubbornness/uncooperativeness (42%) and anger/ aggression (41%) as priority needs. In addition, they identified a need for more information on dealing with the caregiver’s changing relationship with the person with memory problems (41%). The top 10 information needs identified by the home care workers are listed in Table 4.
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Table 4 Top 10 information needs chosen by paid home care workers (N = 59) Information Needs
Frequency
%
Providing personal care to the care recipient Dealing with the care recipient’s forgetfulness/confusion Dealing with the care recipient’s stubbornness/uncooperativeness Dealing with the care recipient’s anger/aggression Dealing with caregiver’s changing relationship with the care recipient Managing the care recipient’s loss of bladder/bowel control Helping the caregiver communicate with the person Helping the caregiver manage his or her own health/safety Managing mobility problems of the care recipient Dealing with the care recipient repeating questions/actions
36
61
29
49
25
42
24
41
24
41
23
39
23
39
23
39
22
37
21
36
Discussion and Implications for Rehabilitation Nurses The responses from the two groups of subjects were different in many ways. The family caregivers’ top information needs dealt mostly with behavior changes seen in the person for whom care was provided, such as forgetfulness/confusion and repeating questions/actions. Although the home care workers’ top needs dealt with behavior changes, they also focused on activities of daily living and personal care, such as bathing, dressing, and grooming, as well as bladder/bowel control. Both family caregivers and home care workers, however, chose more items related to needing help for the care recipient, including dealing with behaviors, than items related to needing help for the family caregivers themselves, such as joining a support group. The findings from this study are consistent with prior research (Edelman et al., 2006; Nichols et al., 2009; Wackerbarth & Johnson, 2002), but this study provides greater elucidation of the information needs of family caregivers of people with dementia. This study has several important limitations. First, the results may not be generalizable to other settings or populations. The sample of unpaid family caregivers and paid
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home care workers was only from northwestern Ohio and southeastern Michigan. Although representative of this geographic area, the samples were also primarily White. Second, test–retest reliability of the survey has not been measured and the extent to which the survey would produce the same answers on repeated trials is unknown. Information needs will change over time, but there should be stability over a short period of time. Third, potential responder bias exists with any voluntary study that uses written surveys. No obvious differences exist between the caregiver responders and nonresponders in that the demographic characteristics of this sample of caregivers reflect the national statistics (i.e., a woman caring for her widowed mother). It is unknown whether differences exist between the home care worker responders and nonresponders. Fourth, many of the subjects who were family caregivers utilized supportive services (e.g., recruited from educational and support groups), and about one-third of the subjects who are home care workers had special training in dealing with people with memory problems. Therefore, their insights may not be reflective of family caregivers who do not use these services or home care workers who do not receive special training. The findings of this study do, however, have implications for rehabilitation healthcare providers who practice across the continuum of care: acute to community. It is important to appreciate the different responses by the unpaid family caregivers and paid home care workers with regard to information needs as they come from different perspectives. Nurses and other providers must seek to understand their clients’ wants and needs, and bring to their attention issues that they may have overlooked or of which they may not be consciously aware. For instance, nurses should realize how bothersome and challenging behavior problems of the care recipient are to the caregivers, such as losing, hiding, or taking things, and provide caregivers with strategies for dealing with these behaviors. One example might be telling caregivers to restrict a person with dementia access to wastebaskets and trashcans, and check all wastebaskets before disposing of their contents, in case objects have been hidden there. Conversely, family caregivers may be overlooking their own needs for more information on providing personal care, which might improve the daily functioning and quality of life for the person with dementia. To illustrate, nurses might explain that chewing and swallowing difficulties can develop as Alzheimer’s progresses and provide caregivers with methods to prevent choking. © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
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This study also reveals the importance of focusing family caregivers on their own needs, and not just on the needs of the individual for whom they are providing care. Compared with noncaregivers, family caregivers are at an increased risk of depression and anxiety, lower levels of subjective well-being, and deteriorating physical health (Burton et al., 2003; Cannuscio et al., 2002; Haley et al., 2010; Mack & Friedland, 2005; Mahoney et al., 2005; Torti et al., 2004). However, as this study demonstrates, caregivers often do not focus on their own health and well-being. Family caregivers’ needs must be met, so that they are able to keep their loved ones at home longer, maximizing the care recipients’ quality of life, and quality of care. Rehabilitation nurses and other providers can help caregivers manage their stress by helping them find respite services and reminding them to use this time to do something they find relaxing or enjoyable.
Key Practice Points
Conclusion and Clinical Relevance
Acknowledgments
It is clear that family caregivers require information to meet their needs and those of the person with dementia. This study identifies top information needs that rehabilitation nurses and other healthcare providers can use for education or intervention purposes both in-person or on the Internet. Information from this study can also be used by healthcare administrators, as they plan cost-effective measures to support both people with dementia and those providing care in the home. Given adequate information, unpaid family caregivers may be able to avoid costly visits to the providers and healthcare institutions, ultimately removing unnecessary costs from the system. The savings can then be invested in providing care that meets caregivers’ needs, and improves to some extent a struggling healthcare system. Nurses and other providers may get direct requests from family caregivers for information as part of their caring role. They are able to respond to these inquires and offer a wide variety of information and education, when they see people with dementia and their family caregivers in their homes. Considering the limitation of generalizing these results to other settings and populations, they could also administer information needs surveys (such as this study used) to quickly assess needs of the families of the individuals for whom they are providing care and target educational interventions to their specific needs.
This study was funded by a grant from the Center for Community Based Care, Ohio Council for Home Care. We thank the caregivers who completed our survey, as well as the staff at the home care agencies. The local chapter of the Alzheimer’s Association is recognized for their help in recruiting subjects for this study and their continued support. Noha Eltaki, research assistant, is also acknowledged for her help with this project.
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Family members provide the majority of care for people with dementia and are an essential resource for that person; little is known about the information needs of these unpaid caregivers. Based on the findings of this research, unpaid family caregivers identified needing information about dealing with care recipients’ behavior changes. This study also identified that paid home care workers perceived that information on personal care was of prime importance. Rehabilitation nurses are in an excellent position to develop caregiver educational materials and supportive interventions and provide supervision for home care workers that interact with dementia caregivers across the continuum of care: acute to home.
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survey. BMC Health Services Research, 13(43), 1–10. Retrieved from http://www.biomedcentral.com/1472-6963/ 13/43 Morgan, D.G., Semchuk, K.M., Stewart, N.J., & D’Arcy, C. (2002). Rural families caring for a relative with dementia: Barriers to use of formal services. Social Science and Medicine, 55(7), 1129–1142. Nichols, L., Martindale-Adams, J., Greene, W., Burns, R., Graney, M., & Lummus, A. (2009). Dementia caregivers’ most pressing concerns. Clinical Gerontologist, 32, 1–14. Pierce, L., & Lutz, B. (2013). Family caregiving. In I. Lubkin and P. Larsen (Eds.), Chronic illness: Impact and interventions (8th ed., pp. 245–288). Sudbury, MA: Jones and Bartlett. Pierce, L., Rupp, G., Hicks, B., & Steiner, V. (2003). Meeting the educational needs for caregivers and survivors of stroke. Gerontology and Geriatrics Education, 23(4), 75–90. Teel, C.S., & Carson, P. (2003). Family experiences in the journey through dementia diagnosis and care. Journal of Family Nursing, 9(1), 38–58. Torti, F.M., Gwyther, L.P., Reed, S.D., Friedman, J.Y., & Schulman, K.A. (2004). A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer’s Disease and Associated Disorders, 18(2), 99–109. Vernooij-Dassen, M.J.F.J., Van Hout, H.P.J., Hund, K.L.M., Hoefnagels, W.H.L., & Grol, R.P.T.M. (2003). Information for dementia patients and their caregivers: What information does a memory clinic pass, and to whom? Aging and Mental Health, 7(1), 34–38. Wackerbarth, S.B., & Johnson, M.M.S. (2002). Essential information and support needs of family caregivers. Patient Education and Counseling, 47, 85–100. Wahl, H.-W., & Gitlin, L.N. (2003). Future developments in living environments in the U.S. and Germany: Potentials and constraints. In K.W. Schaie, H.-W. Wahl, H. Mollenkopf, and F. Oswald (Eds.), Aging independently: Living arrangements and mobility (pp. 281–301). New York, NY: Springer. Wright, S.D., Lund, D.A., Pett, M.A., & Caserta, M.S. (1987). The assessment of support group experiences by caregivers of dementia patients. Clinical Gerontologist, 6, 35–59.
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Information Needs of Family Caregivers of People With Dementia
Victoria Steiner1, PhD, Linda L. Pierce2, PhD, RN, CNS, CRRN, FAHA, FAAN & Diane Salvador 2, PhD, RN 1 College of Medicine and Life Sciences, The University of Toledo, Toledo, OH, USA 2 College of Nursing, The University of Toledo, Toledo, OH, USA
Keywords
Abstract
Caregivers; cognitive; education; information needs. Correspondence Victoria Steiner, University of Toledo, 3015 Arlington Avenue, Mailstop 1027, Toledo, OH 43614. E-mail: [email protected] Accepted February 4, 2015. doi: 10.1002/rnj.214
Purpose: Understanding caregiver needs is essential when caring for people with dementia. The aim of this study was to identify family caregivers’ information needs as perceived by home care workers and the caregivers themselves. Design: This study used a descriptive survey design and convenience sampling. Methods: The two groups of care providers were given a list of 48 items and asked to choose caregivers’ top 10 information needs. Findings: Group 1 (n = 33 unpaid family caregivers) identified dealing with behavior changes and group 2 (n = 59 paid home care workers) identified providing personal care as most important. Conclusion: While differences between these groups emerged, both care providers chose more items related to needing help for the care recipient, than items related to needing help for the caregivers themselves, e.g., support group. Clinical Relevance: These information needs can be used by rehabilitation nurses and other healthcare professionals to develop educational materials and supportive interventions.
Introduction Alzheimer’s disease currently affects more than 5 million individuals in the United States. People with Alzheimer’s disease require around-the-clock care, lasting, on average, 7–8 years from the time of diagnosis (Alzheimer’s Association, 2014). The changes in a loved one’s personality and mental abilities; the need to provide constant, loving attention for years; and the demands of bathing, dressing and other caregiving duties, take a tremendous physical and emotional toll on family caregivers who provide a majority of this care (Alzheimer’s Disease Education and Referral Center [ADEAR], 2008). It has long been known that caregivers of people with Alzheimer’s disease report
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spending more time providing care than caregivers of family members with other chronic conditions. These family members experience poorer health (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; Haley, Roth, Howard, & Safford, 2010), increased levels of anxiety and depression (Cannuscio et al., 2002; Mahoney, Regan, Katona, & Livingston, 2005), and increased burden (Mack & Friedland, 2005; Torti, Gwyther, Reed, Friedman, & Schulman, 2004). Many caregivers are themselves older adults taking care of aging spouses or parents (Alzheimer’s Association, 2014). Caring for a person with Alzheimer’s disease or related dementia often results in the family caregiver being homebound and less able to take advantage of resources or ser-
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vices that might exist (Morgan, Semchuk, Stewart, & D’Arcy, 2002; Wright, Lund, Pett, & Caserta, 1987). Other caregivers live in rural or underserved areas, where no resources or services are available. Consequently, family members of people with dementia often do not receive adequate information or consultation about the disease, treatments, and community services, and feel abandoned by healthcare providers (Beisecker, Chrisman, & Wright, 1997; Connell & Gallant, 1996; Teel & Carson, 2003). This isolation interferes with the effectiveness of treatments for dementia and other coexisting health conditions (Menzin, Lang, Friedman, Neumann, & Cummings, 1999), and may lead to more costly hospital stays (Gottlieb, 1999; Lyketsos, Sheppard, & Rabins, 2000). Future population projections suggest that families will continue to be the principal source of support for people with dementia and that the home will remain the predominant setting for dementia care (Alzheimer’s Association, 2014; Czaja, Eisdorfer, & Schulz, 2000; Wahl & Gitlin, 2003). As family members provide the majority of care for people with dementia, they are an essential resource for that person, as well as an asset to the healthcare system. Understanding of, and attention to, unpaid family caregiver needs and challenges are therefore vital aspects of caring for the person with dementia. These family caregivers, with the assistance of paid caregivers such as home health aides, home care workers, and personal care attendants, form the core of the home care system, providing assistance with activities of daily living and the personal interaction that is essential to quality of life and quality of care for people with chronic conditions such as dementia (Pierce & Lutz, 2013). For example, these trained personnel provide services that include monitoring the person with dementia and caregiver’s health status and performing various skills (e.g., taking vital signs or changing wound care dressings or catheters) under the supervision of licensed professionals (e.g., physicians or rehabilitation nurses), as well as providing respite and homemaking support. All professional providers can work more effectively with and give direction to these family caregivers of people with dementia and unlicensed staff by being aware of caregivers’ issues that results in information needs. The aim of this study was to identify family caregivers’ information needs as perceived by home care workers and the caregivers themselves. Literature Review Several studies in the past decade have focused on the information needs of family caregivers’ of people with © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
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dementia in the United States and serve as exemplars. Wackerbarth and Johnson (2002) surveyed caregivers (n = 128) and discovered that their most important needs were related to legal, financial, and diagnosis and treatment information. Edelman, Kuhn, Fulton, and Kyrouac (2006) also surveyed caregivers (n = 100) and found the top areas of interest to be on information about Alzheimer’s disease (e.g., stages and symptoms, treatments, and genetic aspects) and topics concerning day-to-day care (e.g., coping with symptoms and communicating with the care recipient). In a study examining a behavioral care intervention, Nichols et al. (2009) found that caregivers (n = 165) requested information on the topics of activities, combativeness, confusion, and communication. However, caregivers of people with mild dementia (n = 38) were more likely to request information on topics like confusion, driving, and patient depression as compared with caregivers of people with advanced dementia (n = 122). No studies in the past decade in the United States were found that reflect information needs of family caregivers of people with dementia from the paid caregivers’ perspective; however, three articles from other countries with different healthcare systems were discovered. In the United Kingdom, Cooper and Urquhart (2005) found that family carers (n = 7) asked for more information than they had in the past and that home care workers (n = 47) were expected to respond to a wide variety of inquiries about health, welfare, leisure, and domestic concerns. A study conducted by Vernooij-Dassen, Van Hout, Hund, Hoefnagels, and Grol (2003) evaluated the type of information provided in a memory clinic in the Netherlands to people with dementia and their caregivers (n = 51 dyads) following diagnosis of dementia. Specific information about behavior and professional care was given more frequently when people with dementia had more cognitive, behavioral, or instrumental activities of daily living problems and caregivers had a lower sense of competence. The results of this study, however, did not elucidate the specific information needs of these caregivers, but focused on ways of improving how healthcare providers inform people of this diagnosis. In a more recent study in the United Kingdom by Miranda-Castillo, Woods, and Orrell (2013), people with dementia and their caregivers’ (n = 150) met and unmet needs were compared with professionals’ (n = 152) ratings. The most frequent unmet needs reported by people with dementia, caregivers, and professionals were in the areas of daytime activities, company (loss of meaningful activities and relationships), and psychological distress.
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This study used a descriptive survey design to identify the information needs of unpaid family caregivers of people with dementia as perceived by home care workers and the caregivers themselves.
help they needed for themselves such as joining a support group or managing stress. Demographic questions were included in the survey to describe the subjects. An evaluation form, used in prior work with stroke caregivers (Pierce, Rupp, Hicks, & Steiner, 2003), was amended for use in documenting feedback regarding the survey. The survey was independently reviewed by experts in the field (six registered nurses and social workers with master’s degrees) to establish content validity. After review of the comments, changes were made to the survey, which included adding items to those listed on the survey (e.g., “alcohol consumption” was added to “managing his/her smoking”), and changing the wording of items to simplify the language or eliminate medical jargon. On the finalized survey, unpaid family caregivers were asked to choose from the list of 48 items, the top 10 needs they have experienced, now or in the past, when caring for a person with memory problems. Paid home care workers were asked to choose the top 10 needs they perceive caregivers experience in caring for someone with memory problems. At the end of the survey, respondents were encouraged to write any needs that were not listed.
Subjects
Procedure
The first group of subjects consisted of 33 adult unpaid family caregivers who attend support or education groups sponsored by the local chapter of the Alzheimer’s Association. The second group of subjects consisted of 59 paid home care workers from two local agencies who interface with people with dementia and caregivers in their homes. All subjects resided in northwestern Ohio or southeastern Michigan that includes urban, suburban, and rural areas.
Following Institutional Review Board approval, family caregivers attending support or education groups of the local chapter of the Alzheimer’s Association were given the survey and a cover letter explaining the study. They were given the option to complete the survey immediately or to complete the survey at home and return it in a sealed envelope to the local chapter. The two home care agencies mailed the surveys and cover letter to their employees, or passed them out with their paychecks. The completed surveys were returned or mailed to the home care agency in a sealed envelope. A research team member picked up the completed surveys at both locations. Subjects’ consent was implied upon completion of the survey.
In several of the studies discussed, results were not clearly separated between caregiver and care recipient information needs. In addition, many samples were from only one location and were not randomly selected from the population and thus may not be representative. Nonetheless, these studies help to understand the information needs of unpaid family caregivers in caring for people with dementia. This study contributes to the previous work by using a more comprehensive, focused survey approach to identifying these caregivers’ reported information needs. In addition, this study considers the perspective of paid home care workers in identifying family caregiver information needs. Method Design
Measure No survey instrument existed to assess caregiver information needs. Consequently, a survey was developed by a member of the university research team, based on a review of the literature and nursing practice experience. The instrument was verified for face validity by members of the research team. The first three authors and members of this team are professionals with years of experience in caring for people with dementia and their families. All team members collaborated to review and finalize the survey. The survey contained a list of items dealing with help family caregivers need in caring for people with memory problems. Examples include giving medications or medical treatments, dealing with behaviors such as wandering, or
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Table 1 Means of the demographic characteristics for the unpaid family caregivers and the paid home care workers
Characteristics
Family Caregivers (N = 33) M
Home Care Workers (N = 59) M
Age (years) Years of schooling Time caring (months)
62.2 13.4 38.6
44.8 13.8 57.0
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Table 2 Frequencies of the demographic characteristics for the unpaid family caregivers and the paid home care workers
Characteristics Gender Ethnicity
Relationship of the person for whom they are caring
Health status
Family Caregivers (N = 33) Frequency
Home Care Workers (N = 59) Frequency
29 Female 4 Male 31 White 1 Black 1 Asian or Pacific Islander 0 Hispanic origin 0 American Indian or Alaska Native
54 Female 5 Male 48 White 7 Black 2 Asian/Pacific Islander 1 Hispanic 1 American Indian/Alaska Native 0 Other or unknown
0 Other or unknown 2 Wife 9 Husband 14 Mother 4 Father 0 Brother 0 Sister 1 Friend 3 Other 4 Excellent 14 Very good 8 Good 5 Fair 2 Poor
Job title
8 Nurses 18 Nurse aides 26 Trained in-home caregivers 0 Social workers 6 Other 1 Missing
Findings The subjects who were unpaid family caregivers were primarily White females caring for their mothers, with a mean age of 62 years (see Tables 1 and 2). On average, they had been caring for the person for dementia for 3¼ years, had completed 13 years of schooling, and reported their health as good or better. The subjects who were paid home care workers were mostly White females who were nonprofessionals and either nurse aides or trained in-home caregivers, with a mean age of 45 years (see Tables 1 and 2). On average, they had been working with dementia clients for 4¾ years and had completed 14 years of schooling. © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
Table 3 Top 10 information needs chosen by unpaid family caregivers of people with dementia (N = 33) Information Needs
Frequency
%
Dealing with the care recipient’s forgetfulness/confusion Dealing with the care recipient repeating questions/actions Managing the caregiver’s stress Dealing with care recipient losing, hiding, or taking things Dealing with the care recipient’s loss of a sense of time Dealing with the care recipient seeing/ hearing things not there Assuming new caregiver roles and responsibilities Dealing with caregiver’s changing relationship with the care recipient Dealing with the care recipient’s stubbornness/uncooperativeness Managing the caregiver’s emotions
30
91
20
61
19 15
58 45
14
42
14
42
14
42
14
42
13
39
13
39
The top information needs identified by the unpaid family caregivers dealt mostly with behavior changes seen in the person for whom care was provided; more than 50% of the caregivers’ responses included information needs dealing with behavior problems. The most frequently identified information needs were dealing with forgetfulness/confusion (91%), repeating questions/actions (61%), losing, hiding, or taking things (45%), and a loss of sense of time (42%). Caregivers also identified a need for more information on managing their own stress (58%). The top 10 information needs identified by the family caregivers are listed in Table 3. The top information need identified by the paid home care workers was providing personal care (bathing, dressing, grooming) for the care recipient (61%). Although the top needs identified by the unpaid home care workers also concentrated on dealing with behaviors of the care recipient, the types of behaviors that they chose were different from those of the caregivers. Both caregivers and home care workers identified a need for more information on forgetfulness/confusion (91% and 49%, respectively), but home care workers also identified information on stubbornness/uncooperativeness (42%) and anger/ aggression (41%) as priority needs. In addition, they identified a need for more information on dealing with the caregiver’s changing relationship with the person with memory problems (41%). The top 10 information needs identified by the home care workers are listed in Table 4.
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Table 4 Top 10 information needs chosen by paid home care workers (N = 59) Information Needs
Frequency
%
Providing personal care to the care recipient Dealing with the care recipient’s forgetfulness/confusion Dealing with the care recipient’s stubbornness/uncooperativeness Dealing with the care recipient’s anger/aggression Dealing with caregiver’s changing relationship with the care recipient Managing the care recipient’s loss of bladder/bowel control Helping the caregiver communicate with the person Helping the caregiver manage his or her own health/safety Managing mobility problems of the care recipient Dealing with the care recipient repeating questions/actions
36
61
29
49
25
42
24
41
24
41
23
39
23
39
23
39
22
37
21
36
Discussion and Implications for Rehabilitation Nurses The responses from the two groups of subjects were different in many ways. The family caregivers’ top information needs dealt mostly with behavior changes seen in the person for whom care was provided, such as forgetfulness/confusion and repeating questions/actions. Although the home care workers’ top needs dealt with behavior changes, they also focused on activities of daily living and personal care, such as bathing, dressing, and grooming, as well as bladder/bowel control. Both family caregivers and home care workers, however, chose more items related to needing help for the care recipient, including dealing with behaviors, than items related to needing help for the family caregivers themselves, such as joining a support group. The findings from this study are consistent with prior research (Edelman et al., 2006; Nichols et al., 2009; Wackerbarth & Johnson, 2002), but this study provides greater elucidation of the information needs of family caregivers of people with dementia. This study has several important limitations. First, the results may not be generalizable to other settings or populations. The sample of unpaid family caregivers and paid
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home care workers was only from northwestern Ohio and southeastern Michigan. Although representative of this geographic area, the samples were also primarily White. Second, test–retest reliability of the survey has not been measured and the extent to which the survey would produce the same answers on repeated trials is unknown. Information needs will change over time, but there should be stability over a short period of time. Third, potential responder bias exists with any voluntary study that uses written surveys. No obvious differences exist between the caregiver responders and nonresponders in that the demographic characteristics of this sample of caregivers reflect the national statistics (i.e., a woman caring for her widowed mother). It is unknown whether differences exist between the home care worker responders and nonresponders. Fourth, many of the subjects who were family caregivers utilized supportive services (e.g., recruited from educational and support groups), and about one-third of the subjects who are home care workers had special training in dealing with people with memory problems. Therefore, their insights may not be reflective of family caregivers who do not use these services or home care workers who do not receive special training. The findings of this study do, however, have implications for rehabilitation healthcare providers who practice across the continuum of care: acute to community. It is important to appreciate the different responses by the unpaid family caregivers and paid home care workers with regard to information needs as they come from different perspectives. Nurses and other providers must seek to understand their clients’ wants and needs, and bring to their attention issues that they may have overlooked or of which they may not be consciously aware. For instance, nurses should realize how bothersome and challenging behavior problems of the care recipient are to the caregivers, such as losing, hiding, or taking things, and provide caregivers with strategies for dealing with these behaviors. One example might be telling caregivers to restrict a person with dementia access to wastebaskets and trashcans, and check all wastebaskets before disposing of their contents, in case objects have been hidden there. Conversely, family caregivers may be overlooking their own needs for more information on providing personal care, which might improve the daily functioning and quality of life for the person with dementia. To illustrate, nurses might explain that chewing and swallowing difficulties can develop as Alzheimer’s progresses and provide caregivers with methods to prevent choking. © 2015 Association of Rehabilitation Nurses Rehabilitation Nursing 2016, 41, 162–169
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This study also reveals the importance of focusing family caregivers on their own needs, and not just on the needs of the individual for whom they are providing care. Compared with noncaregivers, family caregivers are at an increased risk of depression and anxiety, lower levels of subjective well-being, and deteriorating physical health (Burton et al., 2003; Cannuscio et al., 2002; Haley et al., 2010; Mack & Friedland, 2005; Mahoney et al., 2005; Torti et al., 2004). However, as this study demonstrates, caregivers often do not focus on their own health and well-being. Family caregivers’ needs must be met, so that they are able to keep their loved ones at home longer, maximizing the care recipients’ quality of life, and quality of care. Rehabilitation nurses and other providers can help caregivers manage their stress by helping them find respite services and reminding them to use this time to do something they find relaxing or enjoyable.
Key Practice Points
Conclusion and Clinical Relevance
Acknowledgments
It is clear that family caregivers require information to meet their needs and those of the person with dementia. This study identifies top information needs that rehabilitation nurses and other healthcare providers can use for education or intervention purposes both in-person or on the Internet. Information from this study can also be used by healthcare administrators, as they plan cost-effective measures to support both people with dementia and those providing care in the home. Given adequate information, unpaid family caregivers may be able to avoid costly visits to the providers and healthcare institutions, ultimately removing unnecessary costs from the system. The savings can then be invested in providing care that meets caregivers’ needs, and improves to some extent a struggling healthcare system. Nurses and other providers may get direct requests from family caregivers for information as part of their caring role. They are able to respond to these inquires and offer a wide variety of information and education, when they see people with dementia and their family caregivers in their homes. Considering the limitation of generalizing these results to other settings and populations, they could also administer information needs surveys (such as this study used) to quickly assess needs of the families of the individuals for whom they are providing care and target educational interventions to their specific needs.
This study was funded by a grant from the Center for Community Based Care, Ohio Council for Home Care. We thank the caregivers who completed our survey, as well as the staff at the home care agencies. The local chapter of the Alzheimer’s Association is recognized for their help in recruiting subjects for this study and their continued support. Noha Eltaki, research assistant, is also acknowledged for her help with this project.
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Family members provide the majority of care for people with dementia and are an essential resource for that person; little is known about the information needs of these unpaid caregivers. Based on the findings of this research, unpaid family caregivers identified needing information about dealing with care recipients’ behavior changes. This study also identified that paid home care workers perceived that information on personal care was of prime importance. Rehabilitation nurses are in an excellent position to develop caregiver educational materials and supportive interventions and provide supervision for home care workers that interact with dementia caregivers across the continuum of care: acute to home.
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