Perspectives on Parkinson Disease Care in Dutch Nursing Homes

Introduction

Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers.

Methods

Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care.

Results

Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses.

Conclusions

PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders.     

Do Trajectories of At-Home Dementia Caregiving Account for Burden After Nursing Home Placement? A Growth Curve Analysis

Transitioning to the nursing home setting is a complex process for family caregivers of older adults with dementia. While nursing home placement (NHP) can alleviate certain caregiving responsibilities, new stressors can also emerge. In the present study, the researchers examined how care-related factors can change leading up to NHP and how these factors influence caregiver outcomes following NHP. A sample of 634 family dementia caregivers (n = 634) were surveyed at three six-month intervals prior to NHP and once during the 12 month period following institutionalization. Growth curve modeling revealed dynamic changes in certain factors leading up to NHP (e.g., caregivers' perceived health), while other factors remained stable (e.g., caregiver burden). Several factors emerged as significant predictors of caregiver burden following NHP, including pre-placement burden and adult day service utilization. For geriatric social workers, these findings may be useful in assessing family caregivers, and in the development and utilization of appropriate interventions.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers’ relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.     

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care‐giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.     

Home care nursing for persons with dementia from a family caregivers' point of view: Predictors of utilisation in a rural setting in Austria

The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care nursing utilisation of PwD and their informal caregivers in a rural setting, according to the Andersen Behavioural Model of Health Care Use. A mixed-methods study was conducted in a rural area of Austria. In using non-random multistage sampling, anonymous questionnaires were distributed to collect data on family caregivers of PwD. Data were analysed using sequential binary logistic regression to characterise home care service users. To reflect the complexity of the Andersen model, a regression tree model was used. In total, 107 family caregivers completed the survey. Predisposing factors for home care nursing utilisation were higher age of the caregiver, female gender of PwD and kinship of the PwD and caregiver. Disruptive behaviour and independence in activities of daily living of PwD were associated with need factors for service use. According to the Andersen model, the predisposing and need factors contributed most to the explanation of home care nursing utilisation. The enabling factors employment, education and income tend to predict service use. Our findings indicate that higher age of the family caregiver and female gender of PwD are the main predictors for utilisation of home care nursing in a rural setting. To improve utilisation, the advantages of professional care services should be promoted, and the awareness about the variety of services available should be increased. To ensure a better understanding of the barriers to accessing home care, PwD should more often be included in healthcare service research.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Video-phone communication with cognitively impaired elderly patients

We investigated the potential role of remote interactions via video-phone in the care of the elderly. Family members and nursing staff were interviewed about their experiences of communicating with elderly people via video-phone. Seven family members and seven nursing staff participated in the studies. The interviews were analysed using qualitative content analysis. The results showed that it was possible for elderly people with cognitive impairment to engage in remote communication when certain conditions were met. There were also indications that the video-phone interaction sometimes increased the attention and focus of the elderly subjects.     

Prevention of falls,malnutrition and pressure ulcers among older persons – nursing staff's experiences of a structured preventive care process

A structured and systematic care process for preventive work, aimed to reduce falls, pressure ulcers and malnutrition among older people, has been developed in Sweden. The process involves risk assessment, team‐based interventions and evaluation of results. Since development, this structured work process has become web‐based and has been implemented in a national quality registry called ‘Senior Alert’ and used countrywide. The aim of this study was to describe nursing staff's experience of preventive work by using the structured preventive care process as outlined by Senior Alert. Eight focus group interviews were conducted during 2015 including staff from nursing homes and home‐based nursing care in three municipalities. The interview material was subjected to qualitative content analysis. In this study, both positive and negative opinions were expressed about the process. The systematic and structured work flow seemed to only partly facilitate care providers to improve care quality by making better clinical assessments, performing team‐based planned interventions and learning from results. Participants described lack of reliability in the assessments and varying opinions about the structure. Furthermore, organisational structures limited the preventive work.     

Family caregiver of elderly patients in palliative care: the process of dying at home

This study sought to identify and analyze the significance of the process of dying for family caregivers of elderly patients in palliative care. It involved qualitative research with the use of interviews. The data were scrutinized by content analysis. The presence of chronic diseases that lead the elderly patient to require palliative care imposes a series of complex and ambivalent feelings on the family caregiver. The proximity and inevitability of death of the elderly patient exacerbate these feelings, but also lead the caregiver to reconsider how to handle this experience. Given this complexity, it becomes clear that the palliative tem need to work with family caregivers, to try to alleviate this situation.     

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCIT-model. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model.The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time.The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.     

Persistent family concerns in long-term care settings: meaning and management

PURPOSE: The aim of this study was to understand institutional and family caregiver characteristics that contribute to the failure to resolve families' persistent complaints about nursing home care of their relatives. DESIGN AND METHODS: Key informant interviews with 9 family members who had persistent concerns about the care of their relatives were conducted. Two focus groups with 5 nurse managers provided staff perceptions of families whose persistent concerns remained unresolved. Content analysis of both individual interviews and focus groups resulted in the extraction of salient themes. RESULTS: Factors associated with persistent discord between families and staff included caregivers' perceptions of staff as incompetent, interfamilial conflicts, and unresolved psychosocial issues. Institutional factors contributing to persistent negative perceptions of care included staff's vulnerability in the face of challenges to their professional competence and stress due to disproportionate amounts of time spent educating and supporting health care aids to cope with distraught families. IMPLICATIONS: The failure to settle, in a mutually satisfactory manner, the complaints of this subgroup of families is discussed in the context of unresolved family issues that interact with institutional failure to respond in a manner that conveys understanding of caregiver stress that is invariably exacerbated when a family member is placed in a long-term care facility.     

Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center

This study aimed at understanding the interactional experience between family caregivers and disabled elderly persons supported in a Day Care Center according to the caregiver's perspective. It also aimed at developing a representative theoretical model for the events experienced by such caregiver. The Grounded Theory was used as methodological framework whereas Interactional Symbolism served as the theoretical framework. Observation and interviews were used for data collection. The following phenomenon arose from the results: feeling of support by the Day Care Center, by the strength of the bond with the elderly and by spirituality in order to continue playing the challenging role of a family caregiver for a disabled elderly person. The study made possible to understand that, among these three supporting cornerstones for coping with the burden generated by the family caregiver role, the care model promoted by the Day Care Center was the intervenient variable in the process of improving the quality of life of the family caregiver-disabled elderly person binomial. This allowed the identification of the main category--moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a Day Care Center.