Journal of Gerontological Nursing

Caring for Family with Alzheimer's Disease and Parkinson's Disease

Barbara Habermann, PhD, RN; Linda Lindsey Davis, PhD, RN

Abstract

NEEDS, CHALLENGES, AND SATISFACTIONS

A convenience sample of 40 family members caring for an individual with either Alzheimer's disease (AD) or Parkinson's disease (PD) completed the Caregiver Assistance Measure (CAM) to identify the types of assistance that would be most helpful in caring for a family member at home. The CAM measures three categories or types of assistance: care knowledge and skills, self-care, and resource acquisition. Caregivers also completed openended questions about the difficulties and the satisfactions of caregiving. The PD and AD caregivers agreed on the importance of 75% of the assistance items on the CAM. In addition, both groups of caregivers identified issues related to care knowledge and skills and self-care as the most difficult aspects of caregiving. These findings suggest many caregiver needs may be common across chronic illness populations and provide initial support for the development and testing of standardized interventions for caregivers.

Abstract

NEEDS, CHALLENGES, AND SATISFACTIONS

A convenience sample of 40 family members caring for an individual with either Alzheimer's disease (AD) or Parkinson's disease (PD) completed the Caregiver Assistance Measure (CAM) to identify the types of assistance that would be most helpful in caring for a family member at home. The CAM measures three categories or types of assistance: care knowledge and skills, self-care, and resource acquisition. Caregivers also completed openended questions about the difficulties and the satisfactions of caregiving. The PD and AD caregivers agreed on the importance of 75% of the assistance items on the CAM. In addition, both groups of caregivers identified issues related to care knowledge and skills and self-care as the most difficult aspects of caregiving. These findings suggest many caregiver needs may be common across chronic illness populations and provide initial support for the development and testing of standardized interventions for caregivers.

Family caregivers provide 80% of chronic illness home care services to individuals 50 and older, providing day-to-day services including management of a medical regimen, symptom management, hands-on care, and emotional support for their family members (Davis, 1996; Schumacher, Stewart, Archbold, Dodd, & Dibble, 2000). The number of family caregivers has increased during the past two decades (National Alliance for Caregiving & American Association of Retired Persons, 1997) and, based on trends in surveys of caregivers in the 1980s and the 1990s, will continue to increase during the next decade (Wagner, 1997).

Caregiving's negative effect on informal caregivers' health has been well documented. Research has shown family caregivers often experience stress (Aranda, 1997; Vitaliano, Russo, Young, Becker, & Maiuro, 1991), depression (Bodnar & Kiecolt-Glaser, 1994; Gallagher, Rose, Rivera, Lovett, & Thompson, 1989; Rose-Rego, Strauss, & Smyth, 1998), compromised physical and psychological health (Mastrian, Ritter, & Deimling, 1996; Rose-Rego et al., 1998), and even an increased risk for premature mortality (Schulz & Beach, 1999). Caregiver factors commonly reported to influence caregiving situations include caregiver age, gender, race, kin relation, and years of caregiving experience (KiecoltGlaser & Glaser, 1999; National Alliance for Caregiving & American Association of Retired Persons, 1997; Schulz & Beach, 1999).

More recently, the positive aspects of caregiving have received some attention in the literature. It has been suggested that the positive aspects of caregiving, such as finding meaning in caregiving, may act as a mediator of psychological well-being. Noonan and Tennstedt (1997) found that identifying meaning in caregiving was negatively associated with depressive symptoms and positively associated with self-esteem in caregivers. Being able to identify positive aspects of caregiving was associated with lower depression scores, lower burden scores, and better self-assessed health in a community based sample of caregivers (Cohen, Colantonio, & Vernich, 2002). Several authors have suggested that to fully understand the caregiving experience and to understand why some caregivers do well despite difficult caregiving circumstances, the positive effects of caregiving need further study (Parran, Miller, Kauf man, Donner, & Fogg, 1999; Konstam et al., 2003).

More than 5 million caregivers provide care for someone with Alzheimer's disease (AD) (Alzheimer's Association & National Alliance for Caregiving, 1999) and much of what is known about family caregivers comes from studies of these caregivers. Preliminary studies of caregivers of individuals with other illnesses suggest similar negative outcomes on caregiver health and well-being. For example, caregiver fatigue and sleep difficulties are reported to be significantly greater for spousal caregivers of individuals with AD, Parkinson s disease (PD), or cancer when compared with a control group with little or no caregiving requirements (Teel & Press, 1999).

Findings from this and other studies (Berry & Murphy, 1995; Carter et al, 1998; Draper, Poulos, Cole, Poulos, & Ehrilich, 1992; Dura, HaywoodNiler, & Kiecolt-Glaser, 1990) indicate caregiving distress and poor psychological health outcomes may be similar among caregivers managing different illnesses. The authors suggest that rather than continuing to document negative caregiver health outcomes in different chronic illness populations, it is time to explore whether a core set of caregiver needs exists across population groups. If cross-population studies document similar, unmet needs for assistance in different chronic illness populations, these data could provide a foundation for development of studies to test caregiver interventions across illness groups.

The purpose of this study was to compare caregivers for individuals with different chronic illnesses in terms of types of assistance they perceived as most important and the satisfying and difficult aspects of caregiving. This study was part of a larger program of research related to interventions for caregivers across chronic illness populations. For the purpose of this study, two chronic illness caregiver groups, AD and PD, were surveyed. These two chronic illnesses were selected for this caregiver study because, although similar in loss of function and downward illness trajectory, each illness presents unique caregiving challenges for families. When depressive symptoms have been compared in spousal caregivers of individuals with AD and PD, the two groups are similar in the length of time caregivers provided assistance and in caregiver distress (Dura et al., 1990). In addition, AD and PD caregiver groups were more depressed than comparison participants (Dura et al., 1990).

ALZHEIMER'S AND PARKINSON'S DISEASE

Alzheimer's Disease

By 2015, 3 to 4 million individuals with AD will need long-term care. This requires informal caregivers (usually the adult child or spouse of the AD care recipient) to provide services beginning with management of transportation and household finances and progressing to bathing, dressing, and feeding the care recipient, while coping with problem behaviors that often arise from the progressive cognitive impairment (e.g., agitation, physical aggressiveness, hallucinations, combativeness). As the illness progresses, AD caregivers spend as many as 70 hours per week primarily monitoring and managing the cognitive decline of the care recipient (Max, Webber, & Fox, 1995). Interventions are aimed mainly at controlling symptoms and managing problem behaviors and have not been found to alter the downward course of the disease.

Table

TABLECAREGIVER ASSISTANCE MEASURE (CAM)

TABLE

CAREGIVER ASSISTANCE MEASURE (CAM)

Parkinson 's Disease

PD is characterized by tremor, rigidity, bradykinesia, and postural instability. Estimates related to PD prevalence are imperfect, but the illness is projected to affect 1.3 million by 2040, with more than 85% of individuals older than 50 (Lilienfeld & Perl, 1994). Only approximately 7% of individuals with PD are admitted to a long-term care facility; most are cared for by their families at home (Mitchell, Kiely, Kiel, & Lipsitz, 1996). Although the need for assistance increases with illness progression (Whetten-Goldstein, Sloan, Kulas, Cutson, & Schenkman, 1997) and cognitive loss co-exists with mobility impairment in an estimated 27% to 44% of individuals with PD (Hobson & Meara, 1999; Slaughter, Slaughter, Nichols, Holmes, & Martens, 2001), PD caregivers report an average of 22 hours of caregiving per week. Those hours are spent managing physical mobility problems associated with the disease. Interventions are aimed primarily at symptom management and have not been found to alter the downward trajectory of the disease.

METHODS

Design

A descriptive survey design with semi-structured interviews consisting of completion of a self-scored caregiving needs assessment and openended questions about the challenges and satisfactions of caregiving was used. Human participant protection procedures for the study were reviewed and approved by a university institutional review board.

Sample

A convenience sample of 20 caregivers of family members with AD and 20 caregivers of family members with PD was obtained through medical practices and support groups. The AD caregivers included 12 spouses, 2 adult daughters, and 6 other family members. The PD caregivers included 19 spouses and 1 other family member. The mean age of the AD caregivers was 60.9 years (range 28 to 83 years), and the mean age of PD caregivers was 71.3 years (range 56 to 85 years). The caregivers in both populations were predominately women (80% to 85%). The AD caregivers were 60% White and 40% Black, and all the PD caregivers were White. The AD caregivers had a mean length of caregiving of 29.1 months. PD caregivers had been involved in caregiving longer with a mean 82.7 months. Only 20% of the AD caregivers attended a support group, whereas 50% of the PD caregivers did.

Data Collection

Data were collected in a quiet room where privacy was ensured either at the medical practice location, support group meeting location, or at the caregiver's home if that was preferred. Caregivers completed the assistance measure, and were interviewed by one of the two authors.

Variables and Measures

Based on data from interviews conducted with caregivers (Smith, Smith, & Toseland, 1991) and findings reported by Navaie- Waliser et al. (2002) from a national survey of 1,002 caregivers as part of the National Family Caregiver Support Program, caregiver assistance needs were conceptualized as a three-dimensional phenomena:

* The need for caregiving knowledge and skills (4 items).

* The need to find and use community resources (7 items).

* The need to access personal assistance services (5 Ítems).

Items on the 16-item Caregiver Assistance Measure (CAM) required caregiver respondents to rank their needs for assistance in each area on a three-point measure (1 = assistance in this area is not important; 2 = assistance in this area is somewhat important; 3 = assistance in this area is very important). The Table shows the individual items of the CAM by category. The internal reliability coefficient, Cronbach's alpha, for the present sample was .79.

Additionally, caregivers were asked to identify the most difficult and the most satisfying aspects of caregiving. Although the question aimed at getting several answers, if a caregiver could only provide one or two aspects or could not identify any aspects, that response was accepted. These open-ended questions were included to qualitatively validate whether what caregivers expressed as the most difficult aspects of the caregiving situation was similar to what types of assistance they perceived as most important.

DATA ANALYSIS AND FINDINGS

The findings from the CAM are presented followed by the findings from the interview questions. Descriptive statistics were performed on the individual CAM items. Content analysis was used to identify the difficulties and satisfactions of caregiving.

Caregiver Assistance Importance

Mean and standard deviations were calculated for both disease caregiver groups for each item of the CAM (Table). On 12 of the 16 items, there was no statistically significant difference between the two caregiver groups. Thus, on 75% of the assistance needs, caregivers were in agreement about how important or beneficial the types of assistance would be. Only four Ítems indicated a statistically significant difference (p =£ .002) between the AD and PD caregiver groups' ratings of perceived assistance importance.

Difficult and Satisfying Aspects of Caregiving

The responses to the interview questions "What are the most difficult things about caregiving?" and "What are the most satisfying things about caregiving?" were transcribed verbatim. Each question was handled separately in the content analysis. The verbatim responses were reviewed for recurring words or themes (Patton, 2002).

After reviewing the verbatim responses to the difficult aspects of caregiving, the coding scheme of knowledge and skills needs, resources needs, and self-care needs was used. The initial review of the responses did not yield any responses that did not fit into this coding. This coding scheme was consistent with how caregiver needs were conceptualized in the development of the CAM, thus allowing CAM responses to be compared with the open-ended questions.

The 20 AD caregivers responded with 38 aspects of caregiving that were difficult. Eighteen of the responses were coded as self-care issues or needs (e.g., getting some time off), and 18 responses were coded as knowledge and skill needs (e.g., how to bathe and dress the individual with AD), and only 2 responses were coded as resource needs. The 20 PD caregivers identified 46 aspects of caregiving that were difficult. Twenty-four of the responses were coded as knowledge and skill needs (e.g., being sure adult with PD is taking medications correctly), and 22 responses were coded as selfcare issues or needs (e.g., being here all the time). No responses were coded as resource needs.

In response to the satisfying aspects of caregiving, the AD caregivers had 13 responses, with several caregivers unable to identify any aspect. The majority could identify only one aspect or area of satisfaction. The most common sources of satisfaction were "knowing that he is getting good care," "I'm the only relative," and "It helps the family." The PD caregivers identified 27 satisfying aspects. Again, several caregivers could not identify any satisfying aspect, however, the majority identified at least two aspects. The most common sources of satisfaction were "being able to help," "being able to still be together," "feeling appreciated," and "love for this person."

DISCUSSION AND LIMITATIONS

Before discussing the results, the study limitations must be acknowledged. The sample was a small convenience sample. No attempt was made to match the two caregiving groups on variables previously mentioned as factors influencing caregiving situations (e.g., age, gender, race, kin relation, years of caregiving experience).

Results suggest caregivers* needs and the situations caregivers find difficult to manage may be common to these two illnesses. The agreements on 75% of the assistance measures on the CAM, along with additional agreement about the difficult aspects of caregiving, suggest caregivers of family members with AD and PD may have common needs. Although there were four items on the CAM on which caregiver groups did not agree, this may be because of differences in the groups that were not controlled for in the sample (e.g., length of time caregiving, length of time with illness). The level of agreement merits development of interventions specifically including both a knowledge and skills component and a self -care component that can be tested in these two caregiver populations. This is consistent with a recent meta-analysis that suggests multicomponent interventions are effective because caregivers have multiple interrelated needs (Sorensen, Pinquart, & Duberstein, 2002).

Although the PD caregivers were able to identify more sources of satisfaction in caregiving than the AD caregivers, it is not possible to conclude from this sample whether this is related to significant differences in the caregiving situation or rather a reflection of the differences in the two caregiving groups. Almost all of the PD caregivers were spouses, while the AD caregivers had a greater diversity of family members. Although much of caregiving research has shown differences in spouse caregivers versus non-spouse caregivers in the areas of depression (Pruchno & Resch, 1989; Schulz, O'Brien, Bookwala, & Fleissner, 1995) and burden (Donaldson, Tarrier, & Burns, 1998), most studies have included either spouses or adult children. Less is known about other caregiver relatives who comprised a portion of the AD caregiver sample (Chumbler, Grimm, Cody, & Beck, 2003). In this sample, the nature of the satisfaction of the PD caregivers (e.g., "being able to still be together," "love for this person") suggests marital relationship is a factor.

Whether caregivers for other chronic illnesses would identify similar assistance needs and difficult aspects of caregiving warrants study. This study explored two chronic illnesses with downhill trajectories that primarily affect elderly individuals. Future research could include chronic illnesses with different trajectories, illness that occur at different points in the lifespan, and illnesses for which caregivers are predominately young to middle aged adults.

IMPLICATIONS

The implications of this study for clinicians that work with the AD and PD populations and their family caregivers are that informal caregivers can identify the need for more information and practical training on how caregivers can care for their family member. The need for information about the illness was rated very high by both caregiver groups. This is an area that nursing, especially home health nursing, traditionally focuses on. In addition, and equally as important, family caregivers need information and support in self-care activities that promote their health and well-being. Clinicians working with caregivers may be able to identify simple activities that can promote well-being, such as taking short walks, reading, or taking 15 minutes a day for one's self. Caregivers often need encouragement from professionals that it is important to take care of their own health.

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TABLE

CAREGIVER ASSISTANCE MEASURE (CAM)

10.3928/0098-9134-20050601-11

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