Family Caregivers for People with Dementia and the Role of Occupational Therapy

ABSTRACT. As the population continues to age, the prevalence of Alzheimer's disease and related dementia (ADRD) will increase, along with the number of informal (e.g., family and friends) caregivers needed. The negative physical, mental, and financial impact providing such care has on the caregiver, in addition to the tremendous economic value of their care, has been well documented. Furthermore, the quality of care and the amount of care that is provided has also been shown to influence the overall health and wellbeing of the care receiver and caregiver. The current qualitative, phenomenological study explored the experience of these family caregivers and how occupational therapists can better assist caregivers for people who have dementia. Five themes emerged: Personal Changes, Obstacles/Challenges, Support Network, Emotions, and Healthcare Thoughts. A discussion of the themes and how occupational therapists can assist these caregivers is included.     

Factors associated with high strain in caregivers of Alzheimer's disease (AD) in Malaysia

A cross-sectional study design involving a total of 230 participants, recruited through Alzheimer's Disease Foundation Malaysia (ADFM), was adopted to access and correlate caregiver strain index (CSI) and resilience (RES) levels of the AD caregivers with various patients’ and caregivers’ factors. Findings revealed that 77.7% of caregivers had a high level of stress, and there was a significant negative correlation between RES and CSI (P < 0.001). Care recipients’ physical function was negatively associated with CSI level. Caregivers’ gender and employment status were not directly associated with CSI but were significantly associated with caregivers’ RES level. Among the mediator variables, years of care was related to increase CSI and adult-children of AD patients experienced a higher level of caregiver strain compared to the other caregiver groups (P = 0.025). Thus, interventions to improve the family caregivers’ RES level, and support for AD patients will be helpful in lowering the strains of AD caregivers.     

Effects of formal supports on stress outcomes in family caregivers of Alzheimer's patients

The aim of this study was to examine whether formal support and coping would mediate the effects of primary stressors and caregiver characteristics on three stress outcomes: yielding of role, anxiety, and physical health. Secondary analysis of longitudinal data from a convenience sample of 452 spouse and adult child caregivers of Alzheimer's patients was used for model testing. Path analysis suggested that decreased physical health of the caregiver was best explained by caregiver overload. Caregiver anxiety was explained by lower levels of care receiver dependency, higher levels of caregiver overload, and higher levels of caregiver anxiety measured 1 year earlier. Yielding of the caregiver role was explained by the direct effect of higher levels of care receiver problem behaviors as well as more use of formal supports. Spouse relationship had a negative effect and care receiver dependency had a positive effect on yielding of the role through the mediating influence of formal support. Neither coping nor formal support mediated primary stressors and caregiver characteristics in the directions hypothesized. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 27–37, 1997     

Differential attrition in a caregiver skill training trial

Participant attrition in randomized trials can reduce statistical power and bias outcomes. However, elective withdrawals are seldom discussed in trial reports. We examined factors associated with elective withdrawals for the first 131 Alzheimer's disease (AD) and Parkinson's disease (PD) caregiver participants that entered Project ASSIST (Assistance, Support and Self-health Initiated through Skill Training), an on-going trial of caregiver skill training interventions. After 20 months of recruitment, 14 (11%) of the 131 ASSIST participants had electively withdrawn before completing the final assessment. Survival analysis demonstrated AD caregivers and non-spousal caregivers dropped out earlier than PD and spousal caregivers, even after controlling for selected baseline covariates. Findings suggest caregiver trial contact strategies may need to be tailored to retain different caregiver groups.     

Tailored music listening intervention to reduce sleep disturbances in older adults with dementia: Research protocol

Sleep disruption in older adults living with Alzheimer's disease and related dementias (ADRD) is debilitating and contributes to increased institutionalization, reduced cognitive function, and accelerated disease progression. Furthermore, sleep disruption is linked to poor health outcomes in caregivers, such as decreased quality of life and increased caregiver burden. Given the potentially harmful side effects of pharmacologic treatment, nonpharmacologic approaches, such as music, may provide a safer alternative to reducing sleep disruption in this vulnerable population. A growing body of literature suggests that calming tailored music may improve sleep quality in older adults with memory loss, but its efficacy has not been demonstrated in older adults with ADRD in the community, where most older adults with ADRD live. If shown to be feasible and acceptable, tailored music interventions can then be tested for efficacy in reducing sleep disruption. This protocol details a wait-list randomized controlled trial (NCT04157244), the purpose of which is to test the feasibility, acceptability, and examine the preliminary efficacy of a tailored music listening intervention in older adults with ADRD who report sleep disruption. Music selections will be tailored to the music genre preferences of older adults with ADRD and account for known sleep-inducing properties. The feasibility of processes that is key to the success of the subsequent study will be examined. Preliminary efficacy of the intervention will be assessed using objective (actigraphy) and subjective (proxy-reported) sleep quality measures. In addition, qualitative data will be solicited, examining the acceptability and satisfaction with the intervention by individuals with ADRD.     

Examining spiritual support among African American and Caucasian Alzheimer's caregivers: A risk and resilience study

Research shows African Americans at greater risk of developing Alzheimer's disease (AD) compared to the Caucasian population, suggesting African American AD caregivers are rising in numbers at a greater rate than Caucasian counterparts. Over a decade ago, an article in Geriatric Nursing revealed spiritual well-being differences among these caregiver groups. The purpose of this study was a quasi-follow-up, utilizing a larger caregiver sample to test spiritual support as a moderator via a risk-and-resilience framework. Secondary data analysis from a sample of 691 AD caregivers examined data on demographics and standardized measures of spiritual support, caregiver burden, and psychological resilience. One-third of the sample reported as African American. Resilience negatively regressed, though not significantly, on caregiving burden among both groups. Spiritual support positively, significantly impacted resilience among both groups, slightly stronger among African Americans. Spiritual support did not significantly moderate risk with either group. Implications for professional healthcare practice are discussed.     

Alzheimer's disease caregiving information and skills. Part II: family caregiver issues and concerns

In recent years researchers have carried out an increasing number of clinical trials with family caregivers of the elderly. The results of these interventions have suggested that caregiver skill-building interventions may be more effective than information/support interventions. Although researchers have given considerable attention to the information and support needed by family caregivers, less is known about how this information and support translates into caregiver skills or into changes in behavior. This is the second in a series of three articles on a study in which researchers used qualitative methods to analyze summaries from the group component of a larger caregiver clinical trial. In this article we describe caregiver issues and concerns in five major areas: (a). dealing with change, (b). managing competing responsibilities and stressors, (c). providing a broad spectrum of care, (d). finding and using resources, and (e). experiencing emotional and physical responses to care. We identify specific skills needed by caregivers in addressing these caregiving issues and concerns, and we compare and contrast skilled with less skilled caregivers. Further work is needed concerning the focus and methods of future caregiver skill-based interventions.     

Experiences of caregivers by care recipient's health condition: A study of caregivers for Alzheimer's disease and related dementias versus other chronic conditions

This study described experiences of caregivers of persons with Alzheimer's disease and other dementias (ADRD) and caregivers of persons with other chronic conditions on self-reported health, type of assistance they provide, perceptions of how caregiving interferes with their lives, and perceived level of support. A secondary analysis was conducted of the 2013 Porter Novelli SummerStyles survey data. Of the 4033 respondents, 650 adults self-identified as caregivers with 11.6% caring for people with ADRD. Over half of all caregivers reported that caregiving interfered with their lives to some extent. The greater the perceived support caregivers reported, the less they thought that caregiving interfered with their lives (p?<?.001). No significant differences were found between ADRD and non-ADRD caregivers regarding general health, types of assistance they provided, and perceived level of support. These findings have the potential to inform future research and practice in the development of supportive services for caregivers.     

Alzheimer's disease caregiving information and skills. Part I: care recipient issues and concerns

Increasing attention has been given to testing clinical trials with family caregivers of the elderly. More recent intervention studies indicated that caregiver skill-building interventions may be more effective than information/support interventions. Researchers have given considerable attention to the content and support needed by family caregivers, but we know less about how this content and support translates into caregiver skills. This is the first in a series of three articles on a study in which qualitative methods were used to analyze summaries from the group component of a larger caregiver clinical trial. In this article we identify content and skills that dementia family caregivers need in addressing three major care recipient issues and concerns: (a) difficult behaviors and emotional responses, (b) personal and instrumental activities of daily living, and (c) cognitive decline.     

Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial

This article presents the efficacy of the recruitment framework used for a clinical trial with sedentary family caregivers of persons with Alzheimer's disease. An integrated social marketing approach with principles of community‐based participatory research provided the theoretical framework for organizing recruitment activities. This multi‐pronged approach meant that caregivers were identified from a range of geographic locations and numerous sources including a federally funded Alzheimer's disease center, health care providers, community based and senior organizations, and broad‐based media. Study enrollment projections were exceeded by 11% and resulted in enrolling n = 211 caregivers into this clinical trial. We conclude that social marketing and community‐based approaches provide a solid foundation for organizing recruitment activities for clinical trials with older adults. © 2011 Wiley Periodicals, Inc. Res Nurs Health 35:70–81, 2012     

Dementia‐friendly faith village worship services to support African American families: Research protocol

African American caregivers for persons living with dementia frequently experience emotional strain, burden, social isolation, and depression. One source of support for them when in distress is their church community. However, many African American churches do not have programs to support families and congregants living with dementia. Dementia often restricts persons living with dementia and their caregivers from attending church. Both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the behavior of the person living with dementia, and shame. Church attendance and religion has been shown to be beneficial for caregivers and elders living with dementia. However, there is little work exploring how involvement in religious practices together (caregivers and persons living with dementia) might enhance the quality of life for these families. This protocol is written to detail the designing and testing of the feasibility and preliminary efficacy of a dementia‐friendly faith village worship service. In the study, we will examine how dementia‐friendly faith village worship services support the well‐being of caregivers and care recipients in three African American churches through observation, interviews, and surveys. A sample of 30 dyads of African American caregivers and persons living with dementia will be asked to attend six modified worship services together over 6 months. In this study, we hope to demonstrate the significant role of churches in the lives of African American family caregivers and persons living with dementia and show that a faith‐based, family‐oriented approach can promote a greater quality of life for African American families living with dementia.     

The influence of caregiver burden on patients' management of Parkinson's disease: implications for rehabilitation nursing.

In this study, we examined how the perceived burdens of caregivers influence how people with Parkinson's disease (PD) manage their condition. Burden has previously been defined as the extent to which caregivers perceive that their health, social life, and financial status are being adversely affected because of their care giving. We hypothesized that when caregivers perceive that their burden is increasing, the level of management by PD patients of their disease decreases. A purposive sample of 41 couples in which one spouse or partner had PD was obtained through physician referrals, PD educational programs, and support groups in six Midwestern states. Twenty-eight of the PD patients were men and 13 were women; their spouses or partners included 28 women and 13 men. How patients managed the disease was measured with the Management of Parkinson's Disease Instrument, developed by the first author. The Zarit Perceived Burden Inventory was used to measure the caregivers' perceived burdens. A significant path (p < .02) was noted between the spouse or partner's perceived burden of care and the patient's management of the disease (beta = -.067). A path coefficient of beta = -365 was obtained. The role of the rehabilitation nurse in the relationship of caregiver and care recipient is that of counselor, educator, and supporter.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Development and testing of the resistiveness to care scale

A conceptual model and objective scale for measuring resistiveness to care in individuals with advanced dementia of the Alzheimer type (DAT) were empirically generated from the perspective of nursing staff caregivers and through observation of residents with DAT. The resistiveness to care scale (RTC‐DAT) was judged to have content validity and reduced to 13 items. Quantifiable scoring procedures and methods for rating videotapes and conducting clinical observations were developed. The RTC‐DAT was tested with 68 subjects at three sites. The RTC has a range of 0–156. Initial testing provided reliability estimates of .82–.87 for internal consistency and good to excellent kappas. Criterion‐related validity with observed discomfort and construct validity by factor analysis support the RTC‐DAT. Measurement issues and recommendations for use in research are discussed. © 1999 John Wiley & Sons, Inc. Res Nurs Health 22: 27–38, 1999.     

The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia

Aim. The aim of this study is to examine associations between caregiver burden, perceived health and sense of coherence in family caregivers to persons with dementia living at home. Background. Most of the studies on family caregivers have focused on burden and morbidity. However, the caregiver's sense of coherence and perceived health have not been studied earlier in relation to caregiver burden. Design. A cross‐sectional investigation design was used. Methods. Older persons, 2238 subjects, with any form of social services, were invited to an assessment of cognitive capacity. Those who had cognitive decline (255) were invited for a medical examination and 130 persons were diagnosed as having dementia. The family caregivers to persons with dementia answered a questionnaire including a caregiver burden scale, the Nottingham health profile scale, sense of coherence scale and the Euroqol instrument. Results. The family caregivers experienced moderate burden, and strong associations were noted between burden, especially isolation, disappointment and emotional involvement with perceived health and sense of coherence, adjusted for age and relationship. Caregivers with lower burden reported significantly better perceived health and higher mean score of sense of coherence than caregivers with higher burden. Conclusions. Assessment of status of family caregivers of persons with dementia living at home seems to be gaining considerable importance. The caregiver burden scale and the sense of coherence scale seem to be highly useful for identifying carers at risk of stress, pattern of burden and coping strategies. Relevance to clinical practice. Nurses can help family caregivers to identify their negative experiences about caregiving and can help them reflect upon their coping strategies to find balance in their situation. Risk groups of caregivers may be identified, especially those with low perceived health and sense of coherence, for early interventions to reduce burden.