The influence of caregiver singing and background music on vocally expressed emotions and moods in dementia care: a qualitative analysis

Background

Music and singing are considered to have a strong impact on human emotions. Such an effect has been demonstrated in caregiving contexts with dementia patients.

Objectives

The aim of the study was to illuminate vocally expressed emotions and moods in the communication between caregivers and persons with severe dementia during morning care sessions.

Design

Three types of caring sessions were compared: the “usual” way, with no music; with background music playing; and with the caregiver singing to and/or with the patient.

Participants and setting

Nine persons with severe dementia living in a nursing home in Sweden and five professional caregivers participated in this study.

Methods

Qualitative content analysis was used to examine videotaped recordings of morning care sessions, with a focus on vocally expressed emotions and moods during verbal communication.

Results

Compared to no music, the presence of background music and caregiver singing improved the mutuality of the communication between caregiver and patient, creating a joint sense of vitality. Positive emotions were enhanced, and aggressiveness was diminished. Whereas background music increased the sense of playfulness, caregiver singing enhanced the sense of sincerity and intimacy in the interaction.

Conclusion

Caregiver singing and background music can help the caregiver improve the patient's ability to express positive emotions and moods, and to elicit a sense of vitality on the part of the person with severe dementia. The results further support the value of caregiver singing as a method to improve the quality of dementia care.     

Informal caregiver strain,preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: Results of a randomised controlled trial

Background

Informal caregivers play an important role in hospital-at-home schemes. However they may increase their burden, especially chronic diseases, like COPD. In the absence of clear differences in effectiveness and cost-effectiveness between hospital-at-home and usual hospital care, informal caregiver preferences play an important role. This study investigated informal caregiver strain, satisfaction and preferences for place of treatment with a community-based hospital-at-homes scheme for COPD exacerbations.

Method

The study was part of a larger randomised controlled trial. By randomisation, patients were allocated to usual hospital care or hospital-at-home, which included discharge at day 4 of admission, followed by home treatment with homes visits by community nurses until day 7 of treatment. Patients allocated to usual hospital care received care as usual in the hospital and were discharged at day 7. Patients were asked if they had an informal caregiver and who this was. Patients and their caregivers were followed for 90 days. Informal caregiver strain was assessed with the caregiver strain index. Satisfaction and preference were assessed using questionnaires. All measurements were performed at the end of the 7-day treatment and the end of the 90-days follow-up.

Findings

Of the 139 patients, 124 had an informal caregiver, of whom three-quarter was the patients’ spouse. There was no significant difference in caregiver strain between hospital-at-home and usual hospital care at both time points (mean difference at T + 4 days 0.47 95% CI −0.96 to 1.91, p = 0.514; mean difference at T + 90 days 0.36 95% CI −1.85 to 1.35, p = 0.634). At the end of the 7-day treatment, 33% (N = 15) of caregivers of patients allocated to hospital treatment and 71% (N = 37) of caregivers of patients allocated to home treatment preferred home treatment, if they could choose. Caregivers were satisfied with the treatment the patient received within hospital-at-home.

Conclusion

There were no differences in caregiver strain between the community-based hospital-at-home scheme and usual hospital care. Most caregivers were satisfied with the treatment. In addition to other outcomes, our results support the wider implementation of hospital-at-home for COPD exacerbations.     

Mutuality and preparedness as predictors of caregiver role strain

Data from 78 older persons and their family caregivers were obtained at 6 weeks and 9 months after hospital discharge. Hierarchical multiple regression was used to determine whether mutuality and preparedness for caregiving were related to lower levels of caregiver role strain. The results indicated that, after controlling for five other variables commonly found to be related to caregiver role strain, mutuality and preparedness ameliorated some but not all aspects of role strain.     

Factors associated with dementia care practices among community health nurses: Results of a postal survey

Background

The incremental prevalence of dementia is making dementia management a worldwide issue. The role of community health nurses must grow along with the increasing aging population and the resulting increase in dementia cases.

Objectives

Explore the factors related to dementia care practices among the different types of community health nurses in Taiwan.

Design

Cross-sectional study.

Setting

Primary care centers or institutions in New Taipei City.

Participants

Community health nurses who work in health care centers (district nurses), long-term care centers (care managers), or home care institutions (home health care nurses).

Methods

Self-completion questionnaires sent by mail.

Results

A total of 195 participants returned the questionnaires (response rate 81.9%). Although 65.8% of participants had experience in case finding, just 34.6% of them reported using validated cognitive testing tools. Only 15% of participants provided case management following dementia case findings. The regression models showed that the different types of community health nurses, number of years working as a nurse, and their level of confidence was significantly related to their dementia care practice. District nurses identified significantly less suspected dementia cases and provided less nursing care to caregivers of dementia patients than care managers and home health care nurses. Among community health nurses, the care managers most often used formal cognitive instruments. District nurses provided the least amount of supportive resources information, had the most negative attitude and the lowest level of confidence toward dementia care than care managers and home health care nurses.

Conclusions

This study presented the profiles of dementia care practice in Taiwan. It showed the considerable variation in knowledge, attitude, confidence and dementia care practices among the different community health nurses. The professional roles regarding dementia care in Taiwan remain blurred. Future training must focus on promoting the level of confidence of community health nurses to identify and manage people with dementia and raise awareness about demented person's and their caregiver's need. The priority of the policy on dementia care in the community must be raised to high, and the professional responsibilities and roles of the different types of community health nurses for the ever increasing dementia population in Taiwan must be redefined and optimized.     

Resources for people with dementia: the Alzheimer Society and beyond

Objective

To summarize services provided by the Alzheimer Society and discuss other supports and resources available for the management of people with dementia.

Sources of information

Ovid MEDLINE was searched using the terms dementia, Alzheimer disease, community health services utilization, and caregiver stress.

Main message

Early diagnosis of dementia has been shown to be of benefit to patients and caregivers. Referral to the Alzheimer Society can help with nonpharmacologic management of dementia at the time of diagnosis and at any time during the course of the illness. Services include education about dementia, caregiver support, coordination of community services, and a variety of written resources for patients and caregivers. When available, the First Link program can assist with referral by minimizing the need for patients or caregivers to contact their local society branches. Other resources, including respite care and technological approaches to managing wandering, are discussed.

Conclusion

The Alzheimer Society is an important part of dementia management, and family physicians should always consider referral at the time of diagnosis, regardless of the severity of the condition. First Link, when it is available, can facilitate referral. Resources such as respite care and day programs should be considered when available.     

Anxiety and Depression Associated With Caregiver Burden in Caregivers of Stroke Survivors With Spasticity

Objective

To investigate the relationship between anxiety/depression and caregiver burden in informal caregivers of stroke survivors with spasticity.

Design

Data were collected via online surveys from informal caregivers 18 years or older who cared for stroke survivors.

Setting

Internet-based survey.

Participants

2007 through 2009 U.S. National Health and Wellness Survey database or Lightspeed Research general panel respondents (N=153).

Interventions

Not applicable.

Main Outcome Measures

Anxiety and depression were self-reported by the caregiver as a physician diagnosis. Depression severity was measured by the Patient Health Questionnaire-9 (PHQ-9). Caregiver burden was measured by the Oberst Caregiving Burden Scale (OCBS) and the Bakas Caregiving Outcomes Scale (BCOS). Logistic regression analyses were conducted with anxiety, depression, and the PHQ-9 depression severity categories as a result of each caregiver burden scale.

Results

Data were analyzed for 153 informal caregivers; they were mostly women (70.6%) and white (78.4%), with a mean age of 51.6 years. For every 1-point increase in the OCBS Difficulty Scale, the odds of anxiety or depression were 2.57 times as great (P<.001) and 1.88 times as great (P=.007), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 2.48 times as great (P<.001). For every 1-point decrease in the BCOS, the odds of anxiety or depression were 2.43 times as great (P<.001) and 2.27 times as great (P=.002), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 4.55 times as great (P<.001).

Conclusions

As caregiver burden increases, caregivers are more likely to have anxiety and depression. Depression severity also increases. Providing treatment to stroke survivors with spasticity that lessens the time and more importantly, the difficulty of caregiving may lead to a reduction in caregiver anxiety and depression.     

What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?: A systematic literature review

Objective

To identify the attitudes and perspectives of the family physician towards the caregivers of demented relatives and to describe the caregivers’ satisfaction.

Design

Systematic review.

Subjects

The studied population consisted of dementia family and their general practitioners.

Main outcome measures

Outcome measures were the generic tasks and skills of the general practitioner to improve home care from the perspective of the family caregiver. Caregivers were assessed on satisfaction regarding the care provided by their general practitioner.

Results

The general practitioner is aware of his/her skills and limits in all aspects of dementia care and his/her role towards the family caregiver. They also acknowledged the importance of an adequate diagnostic process, but they felt uncomfortable disclosing the diagnosis to both the patient and the caregiver. They reported having more confidence in treatment matters than in diagnostic stages. Caregivers’ reports on the attitude of their general practitioner in the diagnostic process were rated from helpful to poorly empathized. General practitioners found themselves to be highly involved in dementia home care, but caregivers rated their involvement to be insufficient. The lack of appropriate communication skills of general practitioners was also not appreciated by the caregivers. A lack of time and reward was considered by the general practitioner to be a major obstacle in dementia care.

Conclusion

The key role of general practitioners as care providers and care planners is consolidated by the family caregivers’ confidence in their skills. Clear guidelines from early diagnosis to adequate referrals should improve the ability of the general practitioner to support these time and energy-consuming home-care situations. Intervention studies addressing the gaps in the skills of the general practitioners in dementia home care management could be helpful in supporting the family caregiver.     

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

Context

Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life.

Health care aides use of time in a residential long-term care unit: A time and motion study

Background

Organizational resources such as caregiver time use with older adults in residential long-term care facilities (nursing homes) have not been extensively studied, while levels of nurse staffing and staffing-mix are the focus of many publications on all types of healthcare organizations. Evidence shows that front-line caregivers’ sufficient working time with residents is associated with performance, excellence, comprehensive care, quality of outcomes (e.g., reductions in pressure ulcers, urinary tract infections, and falls), quality of life, cost savings, and may be affiliated with transformation of organizational culture.

Objectives

To explore organizational resources in a long-term care unit within a multilevel residential facility, to measure healthcare aides’ use of time with residents, and to describe working environment and unit culture.

Methods

An observational pilot study was conducted in a Canadian urban 52-bed long-term care unit within a faith-based residential multilevel care facility. A convenience sample of seven healthcare aides consented to participate. To collect the data, we used an observational sheet (to monitor caregiver time use on certain activities such as personal care, assisting with eating, socializing, helping residents to be involved in therapeutic activities, paperwork, networking, personal time, and others), semi-structured interview (to assess caregiver perceptions of their working environment), and field notes (to illustrate the unit culture). Three hundred and eighty seven hours of observation were completed.

Results

The findings indicate that healthcare aides spent most of their working time (on an eight-hour day-shift) in “personal care” (52%) and in “other” activities (23%). One-to-three minute activities consumed about 35% of the time spent in personal care and 20% of time spent in assisting with eating. Overall, caregivers’ time spent socializing was less than 1%, about 6% in networking, and less than 4% in paperwork.

Conclusions

Re-organizing healthcare aides’ routine practices may minimize the short one-to-three minute intervals spent on direct care activities, which can be interpreted as interruptions to continuity of care or waste of time. Fewer interruptions may allow healthcare aides to use their time with residents more effectively.     

Longitudinal analysis of resourcefulness,family strain, and depressive symptoms in grandmother caregivers

Background

Grandmothers living with grandchildren face stressors that may increase depressive symptoms, but cognitive-behavioral strategies, such as resourcefulness, may reduce the effects of stressors on mental health.

Purpose

This analysis examined the contemporaneous and longitudinal relationships among intra-family strain, resourcefulness, and depressive symptoms in 240 grandmothers, classified by caregiving status to grandchildren.

Methods

Grandmothers raising grandchildren, grandmothers living in multigenerational homes, and non-caregivers to grandchildren reported on intra-family strain, resourcefulness, and depressive symptoms using mailed questionnaires at three time points over 5 years. Structural equation modeling was used to evaluate the mediating effects of resourcefulness and the relationships between variables.

Discussion

Grandmother caregiver status had significant effects on depressive symptoms and intra-family strain but not on resourcefulness. At all waves, higher resourcefulness was associated with fewer depressive symptoms, which reduced appraisals of intra-family strain.

Conclusions

Interventions focused on strengthening resourcefulness could reduce depressive symptoms over time.     

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives

To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness.

Background

Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness.

Design

An exploratory qualitative study.

Methods

Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved.

Results

Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources.

Conclusion

Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles.

Relevance to clinical practice

It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.

     

The effects of participation in leisure activities on neuropsychiatric symptoms of persons with cognitive impairment: A cross-sectional study

Background

People with cognitive impairment have been shown to engage in few structured activities. During periods of unoccupied time or boredom, these patients most likely manifest neuropsychiatric symptoms.

Objective

The purposes of this study were to (1) describe the leisure-activity indicators (variety in leisure activities, appraisal of each activity's restorative function, and leisure dysfunction, i.e. failure to appreciate the importance of restorative aspects of leisure activity), of community-dwelling older Taiwanese adults with cognitive impairment, and (2) explore the relationships between these indicators and neuropsychiatric symptoms in this population.

Design

Cross-sectional.

Setting

Memory disorder and geriatric psychiatric clinics of two hospitals in northern Taiwan.

Participants

Patient-family caregiver dyads (N = 60).

Method

Patients’ dementia severity, based on Clinical Dementia Rating scores, was 0.5–2.0.Family caregivers completed the Chinese Neuropsychiatric Inventory to assess patients’ behavioral problems and the Restorative Activity Questionnaire to assess patients’ participation in leisure activities, restorative experience, and leisure dysfunction.

Results

On average, patients participated in approximately five individual leisure activities, but very few group leisure activities. The top three leisure activities were watching TV, taking a walk, and talking to relatives and friends. The leisure activities in which participants least commonly engaged were fishing, attending cultural exhibitions, and chess/card playing. All leisure-activity indicators were significantly correlated with disease stage, global cognitive function, and neuropsychiatric symptoms. Two leisure-activity indicators (leisure dysfunction and restorative experiences) were significantly correlated with depressive symptoms. Only leisure dysfunction significantly and consistently predicted neuropsychiatric symptoms.

Conclusion

These results can be used by home health or community health nurses to design tailored leisure-activity plans for improving the care quality of patients with cognitive impairment. Health professionals can develop leisure-education programmes to emphasize the value of leisure pursuit and to modify attitudes toward participating in leisure activities. Finally, parks and recreational agencies may re-examine their services and facilities to meet the increasing needs of this population.     

A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Abstract

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

• Implications for Rehabilitation

• Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

• The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

• Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

• Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

     

Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives

Purpose

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient’s illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers’ key challenges in coping with their family member’s advanced colorectal cancer from the perspective of patients and caregivers.

Methods

Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.

Results

In nearly all cases, patient and caregiver reports of the caregiver’s key challenge were discrepant. Across patient and caregiver reports, caregivers’ key challenges included processing emotions surrounding the patient’s initial diagnosis or recurrence and addressing the patient’s practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient’s potential functional decline and prognosis and observing the patient suffer from various physical symptoms.

Conclusions

Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers’ challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

     

The influence of relationships on personhood in dementia care: a qualitative,hermeneutic study

Background

In dementia personhood can be understood as increasingly concealed rather than lost. The sense of being a person evolves in relationships with others. The aim of this study was to increase the understanding of the nature and quality of relationships between persons with dementia, family carers and professional caregivers and how these relationships influenced personhood in people with dementia.

Methods

This Norwegian study had a qualitative hermeneutical design based on ten cases. Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for persons with dementia were (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 ie. moderate dementia (4) able to communicate verbally.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. Data were analysed in two steps: (1) inductive analysis with an interpretive approach and (2) deductive analysis, applying a theoretical framework for person-centred care.

Results

Relationships that sustained personhood were close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia.Relationships that diminished personhood were task-centred relationships and reluctant helping relationships between family carers and persons with dementia and unprofessional relationships between caregivers and persons with dementia.

Conclusions

A broad range of relationships was identified. Understanding the complex nature and quality of these relationships added insight as to how they influenced the provision of care and the personhood of persons with dementia. Personhood was not only bestowed upon them by family carers and professional caregivers; they themselves were active agents who gained a sense of self by what they said and did.

     

The association between nursing diagnoses, resource utilisation and patient and caregiver outcomes in a nurse-led home care service: longitudinal study

Background

The information generated by nurses through standardised nursing languages is insufficiently evaluated and exploited, mainly in home care services, as is its potential impact on outcomes.

Objectives

To find out how often nursing diagnoses are made during nursing home care visits, and to explore their relation with use of resources, mortality, institutionalisation and satisfaction.

Design

Observational, longitudinal follow-up study.

Settings

Home care services delivered by Primary Healthcare Districts in Málaga, Costa del Sol, Almería and Granada, in Spain.

Participants

Patients and caregivers who initiated the Home Care Programme.

Methods

The accumulated incidence of nursing diagnosis was analysed over 34 months of follow-up. Diagnoses were made by nurse case managers in their daily practice. Several regression models were devised to analyse their linkage with the use of resources, mortality, institutionalisation and satisfaction.

Results

Two hundred and forty-seven subjects were included (129 patients and 118 caregivers). 93.8 had been diagnosed (2.8 diagnoses per subject). Risk of caregiver strain and mobility impairment accounted for 40% of total home visits (p = 0.033). Significant differences were observed in the use of physiotherapy and rehabilitation services. The home visits for caregivers were, in 78% of cases, due to the recipient’s baseline functional status. No relation was detected for institutionalisation or for patient satisfaction. There was a higher rate of anxiety diagnosed in the caregiver when the recipient was at greater risk for mortality (RR: 2.08 CI 95%: 1.26-3.42) (p = 0.012).

Conclusions

These data confirm results from other studies which find nursing diagnoses to be sound predictors of resources use. Their synergy with other case-mix systems in home care should be investigated.