Feasibility of Tele-Prompt: A tablet-based prompted voiding intervention to support informal caregivers of older adults with urinary incontinence

Urinary incontinence (UI) is a highly prevalent condition, burdening older adults and their informal caregivers. This study explored the development and feasibility of a 6-week evidence-based, educational/skill building program delivered via tablet-personal computer aimed at developing informal caregiver UI knowledge; and enhancing informal caregiver skill set in prompted voiding and toileting strategies. Caregivers also received individualized weekly coaching sessions from a nurse expert. Feasibility and preliminary efficacy were tested in three caregiver/care-recipient dyads. Recruitment of eligible participants through community-based resources was a challenge to feasibility. Most caregivers found the technology acceptable, but adherence to prompted voiding was inconsistent. All caregivers rated the intervention highly, reported improvements in their care-recipient's urine leakage, found access to a UI expert beneficial, and would recommend it to a friend. The results suggest that the tablet-facilitated intervention was feasible and acceptable to informal caregivers and showed promise for improving both caregiver and care recipient outcomes.     

Use of day centers for respite by help-seeking caregivers of individuals with dementia

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipient's behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.     

Cost‐effectiveness of a telehealth intervention for in‐home dementia care support: Findings from the FamTechCare clinical trial

Determining the cost‐effectiveness of technological interventions is a crucial aspect in assuring these interventions can be adopted. The FamTechCare intervention is an innovative telehealth support that links family caregivers of persons living with dementia to tailored feedback from dementia care experts based on caregiver‐initiated video recordings of challenging care situations. The FamTechCare intervention has demonstrated significant reductions in caregiver depression and increases in caregiver competence when compared to standard telephone support. The purpose of this article is to report on the cost‐effectiveness of the FamTechCare telehealth intervention. Process‐based costing and a cost‐effectiveness analysis using the incremental cost‐effectiveness ratio (ICER) was completed with 68 caregiver and person living dementia with dyads. The cost of the 12‐week FamTechCare telehealth intervention was found to be greater ($48.43 per dyad per week) due to the telehealth equipment, recording application, and expert panel time compared with the telephone support intervention ($6.96 per dyad per week). The ICER was $18.51 for caregiver depression and $36.31 for caregiver competence indicating that it cost no more than $36.38 per dyad per week over 12 weeks to achieve significant improvement in depression and competence in the FamTechCare caregivers compared to the telephone support caregivers. The FamTechCare intervention appears to be cost‐effective when compared to the telephone support intervention and remains near the willingness‐to‐pay threshold for caregivers providing in‐home dementia care support.     

Evaluation of a weekend respite program for persons with Alzheimer disease.

The documented under-use of respite programs in the face of unmet family caregiver needs is puzzling. The purpose of this study was to explore family caregivers' experience with a pilot respite program of weekend care for persons with Alzheimer disease (AD) or a related dementia. The goal-free evaluation approach captured the responses of 18 family caregivers to a pilot program developed by a community nursing organization. A content analysis of the caregiver interviews identified 3 categories: caregiver self-care, relief for the caregiver, and safety and comfort of the family member. The results suggest a link between the family caregiver achieving respite and the safety and comfort of the family member. The caregivers' perspective regarding the costs and benefits of respite influences the frequency with which they use the program. Research implications are discussed.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Use of a Memory Notebook to Help Alzheimer Caregivers Manage Behavioral Excesses

Caregivers providing home care to someone with dementia often need assistance in managing the care recipient's behavioral excesses. Occupational therapists are uniquely qualified to provide needed services to these caregivers. This case study demonstrates the effect of educating a caregiver in the use of a memory notebook to reduce the behavioral excesses of her 87 year old mother with dementia. A single subject AB quasi-experimental design was used to assess the effects of the in-home caregiver education program. Results of the study suggest that memory notebook use was associated with a reduction in the rate of behavioral excesses for the care recipient. The discussion addresses the role of occupational therapy in dementia care and calls for further research on in-home treatment packages to address the behavioral excesses exhibited by individuals with dementia.     

The lived experience of spiritual well-being amongst family caregivers of persons with dementia on palliative care

Family caregivers of persons with dementia are known to experience caregiver burden, anxiety, and social isolation. Spiritual well-being may help ameliorate these characteristics. The meaning of this phenomenon, though, is not known to have been explored previously within this caregiving population. This hermeneutic phenomenological study examined the lived experiences of spiritual well-being in 10 family caregivers. The analysis of semi-structured interviews revealed 5 prominent themes: being connected, strength, presence, hardships, and duty. Phenomenological writing revealed the essence of spiritual well-being in the context of this study. This understanding will help nurses appreciate the importance some family caregivers place on spirituality and recognize when a family caregiver may benefit from a spiritual guidance referral. Further research is recommended to examine associations between spiritual well-being and burden, depression, and social isolation in caregivers of persons with dementia at different stages of receiving palliative care.     

Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?

PurposeOlder adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience.MethodsUsing data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving).FindingsAbout one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (–0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33).ImplicationsThe provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.     

Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report

To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient–caregiver dyads, a cohort study enrolled patient–caregiver dyads at a primary care geriatrics clinic. Thirty–two percent of persons with dementia self-report pain “right now.” Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater. Fifty-two percent of caregivers report their care recipients with dementia are in some pain “right now.” Of these, 52% report slight/mild pain, 30% moderate, and 18% severe pain or greater. Fifty-nine percent of dyads agree on the presence or absence of patient pain. In multivariate analysis of dyadic congruence of pain reports by patient and caregiver factors, only patient factors predicted congruence. The odds of congruence of pain reports increase 3.7 (1.2–12.3) if the patient is male and decrease 0.938 (0.93–0.99) as the patient becomes more agitated. These findings suggest that community-dwelling persons with dementia report less pain than those in the nursing home and caregivers do a fair job of predicting patient pain.     

The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter?

Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients’ comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients’ comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.     

Family caregiver burden by relationship to care recipient with dementia in Korea

The purpose of this study is to compare demographic and clinical characteristics of caregivers and care recipients by caregiver type (i.e., daughter, son, daughter-in-law, and spouse) and to compare the caregiver burden among each type of caregiver. A cross-sectional survey design was used involving 157 primary family caregivers and their care recipients who were diagnosed with dementia. Participants were from the Korean capital and the surrounding suburbs. Spouse caregivers rated themselves as having poorer health and less social support than adult child caregivers did. Those cared for by daughters-in-law were older and demonstrated more memory and behavioral problems than those by spouses, sons, or daughters. Spouses perceived the highest burden among caregivers. Nursing interventions could be developed on the basis of the specific type of burden that various caregivers experience. For future studies, exploring the earlier marital relationship between spouse caregiver and care recipient would be useful for understanding the burden of spouse caregivers.     

A family caregiver-oriented discharge planning program for older stroke patients and their family caregivers

Aims. To test the effectiveness of a discharge planning program for dyads of older stroke survivors and their family caregivers in Taiwan. Background. Family caregivers of stroke survivors often feel inadequately prepared to deal with the physical, cognitive and emotional needs of the stroke survivors. However, little information could be found on discharge planning programs for caregivers of stroke survivors in Asian families. Design. A randomised experimental design was used to explore the effects of a discharge planning program for 158 dyads of older stroke patients and their family caregivers. Methods. The control group (n = 86 dyads) received only routine hospital discharge planning services and the experimental group (n = 72 dyads) received routine hospital discharge planning services plus the caregiver‐oriented discharge planning program. Outcome variables were measured at baseline, before discharge and one month after hospital discharge. Variables were measured by the Nurse Evaluation of Caregiver Preparation Scale, Preparedness for Caregiving Scale, Caregiver Discharge Needs Satisfaction Scale and Perception of Balance between Competing Needs Scale. Results. Caregivers in the experimental group had significantly better nurse evaluation and self‐evaluation of preparation after the program than before, and greater satisfaction of discharge needs one month after discharge than before discharge. Caregivers in the experimental group had significantly better nurse evaluations and self‐evaluations of preparation and better satisfaction of discharge needs after the program compared with the control group. However, no significant difference was found between caregiver groups in perceived balance of competing needs. Conclusions. This discharge planning program benefited family caregivers of older stroke patients during the transition from hospitalisation to one month after discharge. Relevance to clinical practice. This caregiver‐oriented discharge planning program, with its emphasis on individualised health education and home visits following discharge may improve caregivers’ preparation and the satisfaction of their needs during the discharge transition.     

A practical guide to caring for caregivers

Patients who provide care to family members or friends with dementia are likely to be in a family physician's practice. The caregiver role can be stressful, and identifying these patients can give the family physician opportunities to help patients cope with the challenges of the caregiver role. Family physicians have a systematic approach for assessing the degree of caregiver burden in these patients. Because caregivers are at increased risk for depression and anxiety, screening should be done to exclude the presence of either disorder. The caregiver's skill in managing behavioral problems in the family member with dementia should be assessed. If there are problems, family physicians should provide practical counseling about common caregiving stresses and about resources that benefit caregivers. Helping the caregiver learn strategies for coping with difficulties may help reduce some of the stress the caregiver is experiencing.     

Caregiver satisfaction with preparation for discharge in a decreased-length-of-stay cardiac surgery program.

Preparing caregivers of cardiac surgery patients for early discharge is an essential component of patient care. This study examined caregiver satisfaction with preparation for discharge in a decreased length of stay cardiac surgery program. Data were obtained from caregivers (N = 53) of cardiac surgery patients discharged on postoperative day 4 or 5. Data were analyzed with regard to caregiver satisfaction with preparedness for discharge, preference for a longer hospitalization, benefit of an earlier discharge, and patient care expectations. Results indicted that the majority of caregivers preferred earlier discharge but did not feel prepared for the responsibility of patient care. Implications for education and support for the caregiver before early discharge are addressed.     

Palliative Excellence in Alzheimer Care Efforts (PEACE): a program description

Hospice is the standard method for providing quality end-of-life care in the United States. However, studies reveal that persons with dementia are infrequently referred to hospice, that barriers exist to increasing hospice utilization in this population, and that patients with dementia would benefit from hospice or hospice-like services earlier in the disease course. The Palliative Excellence in Alzheimer Care Efforts (PEACE) program responds to these deficiencies, striving to improve end-of-life care of persons with dementia and to integrate palliative care into the primary care of patients with dementia throughout the course of the illness. The PEACE program is a disease management model for dementia that incorporates advance planning, patient-centered care, family support, and a palliative care focus from the diagnosis of dementia through its terminal stages. PEACE is coordinated through the primary care geriatrics practice of the University of Chicago. Patients and caregivers are interviewed every 6 months for 2 years, and a postdeath interview is conducted with caregivers. These interviews assess care domains important for the optimal care of persons with dementia and their caregivers. A nurse coordinator reviews interviews and provides feedback to physicians, facilitating enhanced individual care and continuous quality improvement for the practice. Initial feedback suggests patients have adequate pain control, satisfaction with quality of care, appropriate attention to prior stated wishes, and death occurring in the patient's location of choice. Families voiced similar high marks regarding quality of care. This program demonstrates an innovative model of providing quality palliative care for dementia patients and their caregivers.     

Development of Self-Efficacy Questionnaire for Chinese Family Caregivers

The purpose of this study was to develop a Self-Efficacy Questionnaire for Chinese Family Caregivers. Semi-structured interviews with 10 family caregivers of people with dementia were conducted to explore how Chinese caregivers manage caregiving and what difficulties they face. The findings of the study assisted in the development of the instrument. Five categories of caregiver behaviours were identified from the qualitative data: gathering information about treatment, symptoms, and health care; obtaining support; responding to behaviour disturbances; managing household, personal, and medical care; and managing distress associated with caregiving. The challenges of caregiving were also identified, including deterioration of care recipients, particularly their behaviour disturbances, a shortage of supportive resources, stigmatization of dementia among the general population, as well as increased distress and decreased social activities due to increased care demand. The findings were used to develop the Self-Efficacy Questionnaire for Chinese Family Caregivers, and 35 items comprising five subscales (representing the above five categories of caregiver behaviour) were generated.     

A Model of Consequences of Need-Driven, Dementia-Compromised Behavior

PURPOSE: To extend the original need-driven, dementia-compromised behavior (NDB) model by explaining the consequences of behavioral symptoms for the person with dementia. ORGANIZING CONSTRUCT AND METHODS: Literature is reviewed and the consequences of expressing needs through need-driven, dementia-compromised behaviors are posited. The consequences of need-driven, dementia-compromised behavior (C-NDB) theory is proposed as a framework to improve understanding of the person with dementia and the consequences of behavioral symptoms and unmet needs. FINDINGS: Instead of normative verbal communication, people with significant dementia commonly communicate need via non-normative behaviors, making it difficult for caregivers to know that the person has a need and the extent of such need. Not meeting needs of people with dementia affects the person with dementia, care factors, and contextual factors. Cascading effects occur in which not meeting the original need results in new needs and behavioral symptoms. CONCLUSIONS: This framework indicates the consequences of expressing need behaviorally rather than verbally and shows that caregiver actions might moderate the events that lead to many needs being unresolved. Suggestions are made regarding future research questions deduced from the model.     

Determinants of the discrepancy in patient‐ and caregiver‐rated quality of life for persons with dementia

Aims. To determine factors related to the discrepancy in patient‐ and proxy‐rated quality of life for patients with dementia; whether this discrepancy is associated with characteristics of patients, caregivers or the caregiver–patient relationship; and which characteristics best predict this discrepancy. Background. To increase the reliability of quality of life measurements for persons with dementia, many researchers have incorporated proxy reports. However, their investigations have indicated that caregiver‐rated quality of life is not the same as the patient’s own rating. The factors related to this discrepancy have previously been explored, but studies rarely focussed on the quality of the caregiver–patient relationship as a determinant of the discrepancy. Design. A cross‐sectional design was used. Methods. Data were gathered from community‐based interviews with 120 dyads of patients with Alzheimer’s disease or related dementia and their caregivers in Taipei. A structured questionnaire was used to collect data, and the main variable (quality of life–Alzheimer’s disease) was rated separately by patients and caregivers. The data were analysed using intraclass correlation coefficients and multivariate regression methods. Results. The agreement between patients’ and caregivers’ quality of life–Alzheimer’s disease ratings was low. This discrepancy was significantly associated with disturbing dementia behaviour, caregivers’ perceived distress for problem behaviours, caregivers’ overall quality of life and quality of the caregiver–patient relationship. Conclusions. The observed discrepancy between caregiver‐ and patient‐rated quality of life for persons with dementia was largely predicted by the quality of the caregiver–patient relationship. Relevance to clinical practice. Medical professionals should cautiously deliberate when using caregiver‐reported quality of life to substitute for patient‐reported quality of life. When using a proxy report or a combined caregiver–patient rating, medical professionals should assess the quality of the relationship between patient and proxy.     

Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial

Among over 5 million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6 months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3 months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6 months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.