Home care for patients with dirty homes: a qualitative study of the problems experienced by nurses and possible solutions.

BACKGROUND: Home-care nurses are often the first care professionals to enter a dirty home. The perceived problems and support needs of home-care nurses in these situations are largely unknown. OBJECTIVE: To examine the problems home-care nurses encounter in caring for patients living in dirty homes, and possible solutions for these problems. DESIGN: Qualitative descriptive research. SETTING: Communities across the Netherlands. PARTICIPANTS: Twenty-three participants to investigate the problems or needs experienced, and 20 participants to investigate solutions. Participants included patients, home-care nurses and other professionals working in the community. METHODS: Semi-structured interviews were conducted with 23 participants and analysed according to the principles of deductive thematic analysis. Subsequently, in interviews with 4 (representatives of) patients and four focus-group sessions with 16 professionals, the problems found were validated and solutions to the problems discussed. RESULTS: Ten subthemes emerged that were clustered into three main themes: 'dilemmas arise in choosing the right nursing care'; 'cooperation and an integrated approach are often necessary, but lacking'; 'home-care nurses have insufficient competencies'. Seven possible solutions were found: (1) strengthening collaboration between organizations in the community; (2) involving others sooner; (3) case management; (4) person-centred care; (5) taking more time; (6) providing home-care nurses with tools and support services; and (7) strengthening the competencies of nurses. CONCLUSIONS: Care for patients with a dirty home is complex. An integrated person-centred care approach is often necessary and home-care nurses need extra support to provide such care. Interventions should not only focus on patients, but address the nurses, the organization, and the collaboration between organizations in the community.

Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial.

BACKGROUND: Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8365.

Access to palliative care for homeless people: complex lives, complex care.

BACKGROUND: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. METHODS: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively. RESULTS: Three key themes were: 'late access', 'capricious trajectory' and 'complex care'. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network. CONCLUSIONS: The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness.

Self-Management Support and eHealth When Managing Changes in Behavior and Mood of a Relative With Dementia: An Asynchronous Online Focus Group Study of Family Caregivers' Needs.

The current article discusses how and by whom family caregivers want to be supported in self-management when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely. [Res Gerontol Nurs. 2018; 11(3):151-159.].

Online Self-Management Support for Family Caregivers to Help Them Manage Behavior Changes in Their Relative With Dementia: Study Protocol for a Randomized Controlled Trial and a Process Evaluation.

BACKGROUND: Online interventions are potentially effective ways to support family caregivers in the management of behavior changes in their relative with dementia. OBJECTIVE: The objective of this paper is to present the design of a study evaluating and comparing 3 intervention arms for online self-management support. METHODS: A randomized controlled trial (RCT) will be conducted with a total of 81 family caregivers of community-dwelling people with dementia in the Netherlands. Family caregivers will be randomly allocated to one of the following intervention arms: (1) a major self-management support intervention consisting of personal email contacts with a nurse specialized in dementia care, online videos, and electronic bulletins (e-bulletins); (2) a medium self-management support intervention consisting of only online videos and e-bulletins; and (3) a minor self-management support intervention with only e-bulletins. The primary outcome is the self-efficacy of the family caregiver. The secondary outcomes are the behavior problems of the person with dementia as reported by the family caregiver, and positive and negative aspects of the relationship. Background characteristics (eg, type of family relationship) will also be assessed. All data for the RCT will be collected via online questionnaires, administered before the intervention (T0), after 6 weeks (T1), and after 12 weeks (T2). Alongside the RCT, a process evaluation will be conducted, based on a number of evaluation questions and semi-open interviews with family caregivers. RESULTS: Data collection will be completed in August 2017. Study results will be reported in early 2018. CONCLUSIONS: The study will shed more light on the effect of online self-management support interventions and insights will be gained into whether a major intervention, consisting of personal email contacts with specialized nurses, videos, and e-bulletins, has more effect than smaller online interventions. This is relevant in an age with increasing numbers of people with dementia, growing pressure on family caregivers, more and more people using the Internet, and increasing healthcare costs. TRIAL REGISTRATION: Nederlands Trial Registry (NTR): NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC).

Dementia case management through the eyes of informal carers: A national evaluation study.

This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers' care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related ( p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.

Self-management-support in dementia care: A mixed methods study among nursing staff.

Background Self-management in patients and family caregivers confronted with dementia is not self-evident. Self-management skills may be limited because of the progressive cognitive decline of the patient and because family caregivers are often also very aged. Self-management support by nursing staff is therefore of paramount importance. Objectives To gain insight into how nursing staff perceive their self-management support tasks, and how they put them into practice. Research questions are: 'What are the opinions and experiences of Dutch nursing staff working in home care or residential elderly care regarding self-management support for people with dementia and their family caregivers?' and 'Do nursing staff feel sufficiently trained and skilled for self-management support?'. Methods A mixed methods approach was used, combining cross-sectional quantitative survey data from 206 Dutch nursing professionals with qualitative interviews among 12 nursing staff working in home care or residential elderly care in The Netherlands. Results Nursing staff working in home care experienced self-management support of people with dementia as a part of their job and as an attractive task. They consider 'helping people with dementia to maintain control over their lives by involving them in decisions in daily care' the essence of self-management support. Nursing staff saw family caregivers as their main partners in providing self-management support to the patient. They were less aware that family caregivers themselves might also need self-management support. Nursing staff often felt insufficiently trained to give adequate self-management support. RN's and CNA's did not differ in their opinions, experiences and training needs. Conclusions Nursing staff in home care do consider self-management support an important and attractive task in dementia care. Their skills for providing self-management support to patients with dementia and family caregivers need improvement. Recommendations Nursing staff need sufficient training to enable the proper provision of self-management support for people with dementia. More attention should also be given to the support of self-management for family caregivers.

Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study.

BACKGROUND: Self-management is important for family caregivers of people with dementia, especially when they face changes in their relative's behavior and mood, such as depression, apathy, anxiety, agitation and aggression. The aim of this study is to give insight into why these changes in behavior and mood are stressful for family caregivers, what self-management strategies family caregivers use when managing these changes and the stress they experience. METHODS: A qualitative study was conducted using four online focus groups with 32 family caregivers of people with dementia living in the Netherlands. Transcripts of the focus group discussions were analyzed using principles of thematic analysis. RESULTS: Managing changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences. CONCLUSIONS: Behavior and mood changes of a person with dementia are stressful for family caregivers. They use several self-management strategies to positively affect the mood and behavior changes, and also to manage their own stress.

The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review.

BACKGROUND: Informal caregivers of people with dementia are challenged in managing the consequences of dementia in daily life. The objective of this meta-review was to synthesize evidence from previous systematic reviews about professional self-management support interventions for this group. METHODS: In March 2014, searches were conducted in PubMed, CINAHL, Cochrane Library, Embase and PsycINFO. The PRISMA Statement was followed. Interventions were grouped using Martin's targets of self-management, covering 5 targets: relationship with family, maintaining an active lifestyle, psychological wellbeing, techniques to cope with memory changes and information about dementia. Using an evidence synthesis, the outcomes from the included interventions were synthesized and conclusions were drawn about the level of evidence for the effectiveness of interventions within each target. RESULTS: Ten high-quality systematic reviews were selected. Evidence exists for the effectiveness of professional self-management support interventions targeting psychological wellbeing on stress and social outcomes of informal caregivers. In addition, evidence exists for the effectiveness of interventions targeting information on ability/knowledge. Limited evidence was found for the effectiveness of interventions targeting techniques to cope with memory change on coping skills and mood, and for interventions targeting information on the outcomes sense of competence and decision-making confidence of informal caregivers. CONCLUSIONS: Scientific evidence exists for the effectiveness of a number of professional self-management support interventions targeting psychological wellbeing and information. Health care professionals could take account of the fact that psycho-education was integrated in most of the self-management support interventions that were found to be effective in this meta-review. Furthermore, longer and more intensive interventions were associated with greater effects.

Guided imagery in people with fibromyalgia: a randomized controlled trial of effects on pain, functional status and self-efficacy.

Studies on the effects of guided imagery in patients with fibromyalgia show varying results. This randomized controlled trial (n = 65) aims to give more insight into the effects on pain, functional status, and self-efficacy. Daily pain was assessed with a pain diary using a Visual Analogue Scale. Functional status and self-efficacy were measured at pretest, posttest, and follow-up using the Fibromyalgia Impact Questionnaire and the Chronic Pain Self-Efficacy Scale. No effects of guided imagery could be established. Explanations for the diverging results between studies might be found in the content of the exercises, length of the intervention period, and background of participants.

The effects of a nursing guideline on depression in psychogeriatric nursing home residents with dementia.

OBJECTIVE: To study the effects of introducing a nursing guideline on depression in residents with dementia of psychogeriatric nursing home wards. METHODS: A multi-center controlled clinical trial with randomization at ward level was used to study the effects of the guideline introduction. Nursing teams were trained in applying the guideline to their own residents diagnosed with depression in dementia. Key elements of the nursing guideline are increasing individualized pleasant activities and decreasing unpleasant events. Participating residents were 97 residents diagnosed with dementia and comorbid depression, from 18 psychogeriatric nursing home wards, in 9 Dutch nursing homes. Measurements took place at pre-test, post-test and follow-up. Primary outcome was severity of depression measured with the MDS/RAI-Depression Rating Scale (DRS) and the Cornell Scale for Depression in Dementia. Secondary outcome is mood as measured by the FACE-observation scale. RESULTS: Compliance with the nursing guideline was moderate. Despite this, residents on the experimental wards showed a significant reduction in depression on the DRS. With the Cornell scale a reduction of depression was found as well, although not significantly different from that in the control group. No effects on observed mood were found. CONCLUSION: This study shows significant reductions in depression severity by introducing a nursing guideline on psychogeriatric nursing home wards. Better compliance with the guideline could probably enlarge the effects. Some ways to achieve enhanced compliance are: (1) additionally train non-certified nurse assistants, and (2) emphasize necessary conditions for successful introduction of the guideline to nursing team managers.

Introducing a nursing guideline on depression in dementia: a multiple case study on influencing factors.

BACKGROUND: Successfully introducing care innovations depends on the type of care setting, the intervention and specific circumstances. In this study the factors influencing the introduction of an evidence based nursing guideline on depression in psychogeriatric nursing home residents were studied. METHODS: A mixed methods multiple case study design was used. The cases consisted of nine psychogeriatric wards participating in the intervention group of a controlled clinical trial. Eight types of data source (qualitative and quantitative) were used in the analyses. Triangulation of researchers, data and methods took place. Factors were categorized according to their organizational level: nursing home management (level 1), nursing team (level 2), CNAs (level 3), and residents (level 4). RESULTS: Factors influencing guideline introduction were mainly found at the levels of the nursing home management and the nursing team. Most factors concern stability of the organization and team (e.g. the inhibiting effects of reorganizations and other innovations), motivation (e.g. the facilitating presence of an opinion leader) and compatibility with current practice and vision (e.g. a facilitating emotion-oriented care vision). Factors influencing a successful application of the guideline are mainly found at CNA and resident level. At CNA level most factors relate to an emotion-oriented care vision (e.g. having a warm and creative personality). At resident level inhibiting factors mainly concern the residents' health status (e.g. feeling sick and/or having much pain). Important facilitating factors are positive attitudes of relatives and observing a reduction of depression severity. CONCLUSIONS: Special facilitating factors for the guideline introduction and application seem to be the presence of a local opinion leader and the positive attitudes of relatives. Together they can motivate a nursing team in using the guideline. After a successful introduction of the guideline it's important to focus on its consolidation in daily practice.

The introduction of a nursing guideline on depression at psychogeriatric nursing home wards: effects on certified nurse assistants.

BACKGROUND: To improve care for residents with depression in dementia, an evidence based nursing guideline was developed. Using the guideline has already shown positive effects on depression in psychogeriatric nursing home residents. OBJECTIVE: To study the effects of the introduction of the nursing guideline 'depression in dementia' on perceived professional autonomy, workload and feelings of powerlessness and confidence in Certified Nurse Assistants. DESIGN: A multi-center controlled intervention study with randomization at ward level, using pre-test, post-test and follow-up measurements. SETTING: 18 psychogeriatric wards in 9 Dutch nursing homes. PARTICIPANTS: 193 Certified Nurse Assistants working on psychogeriatric nursing home wards for at least 20 h per week. METHODS: An evidence based guideline for nursing teams of psychogeriatric nursing home wards was introduced on nine experimental wards to reduce depression in residents diagnosed with depression in dementia. The guideline introduction consisted of team training and the installation of a promotion group. The nine control wards continued providing usual care. Primary outcomes are: (1) perceived professional autonomy and (2) experienced workload in Certified Nurse Assistants measured with the VBBA subscales 'autonomy' and 'pace and amount of work'. Secondary outcomes are perceived powerlessness and confidence in caring for depressed and demented residents, using two self-developed scales. RESULTS: The guideline introduction had a small, significant, positive effect on generally perceived professional autonomy in the Certified Nurse Assistants of the experimental wards. No short-term effects were found on generally experienced workload, or on confidence and powerlessness in caring for depressed residents with dementia. CONCLUSION: The introduction of the nursing guideline 'depression in dementia' has small, positive effects on perceived professional autonomy among the Certified Nurse Assistants. Long-term effects on experienced workload should be studied.

Comorbid depression in dementia on psychogeriatric nursing home wards: which symptoms are prominent?

OBJECTIVE: To provide insight into the prevalence and clinically relevant symptoms of comorbid depression among dementia patients in psychogeriatric nursing home wards, to enhance depression recognition. DESIGN: Cross-sectional analyses of multicenter diagnostic data. SETTING: Psychogeriatric wards of Dutch nursing homes. PARTICIPANTS: Five hundred and eighteen residents with dementia. MEASUREMENTS: 1) Diagnosis of depression in dementia (Provisional Diagnostic Criteria for Depression of Alzheimer disease [PDC-dAD]), 2) dementia (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-PC), and 3) stage of dementia (Geriatric Depression Scale). RESULTS: The point prevalence of comorbid depression in dementia (Stages 2-6) on psychogeriatric nursing home wards was 19%. "Depressed mood," "irritability," and "fatigue" were the most prevalent depressive symptoms. Residents taking antidepressants at the time of the PDC-dAD depression diagnosis showed more depressive symptoms than residents who were not. The mean number of depressive symptoms was 5.6 (SD 1.84), which did not differ between the dementia stages. Also, no differences were found in the point prevalence of the shown symptoms between dementia stages. CONCLUSION: Irritability was put forward by the developers of the PDC-dAD, as one of the specific symptoms of depression in Alzheimer disease. This study shows that irritability is one of the most prevalent depressive symptoms in psychogeriatric nursing home residents diagnosed with comorbid depression. Irritability should therefore alert caregivers to the presence of depression and could help early recognition. The high-prevalence rate of comorbid depression in dementia in this setting justifies attention to early recognition and intervention.

The relationship between severity of Alzheimer's disease and prevalence of comorbid depressive symptoms and depression: a systematic review.

OBJECTIVES: To gain more insight into the association between severity of Alzheimer's Disease (AD) and prevalence of comborbid depression. METHODS: A systematic literature review based on the Cochrane methodology was performed. PubMed, PsychINFO and EMBASE databases were searched for existing studies that fulfilled predefined inclusion criteria. The studies were divided into: (1) those that analysed the association between severity of AD and prevalence of depressive symptoms ('continuous' approach) and (2) those that investigated the association between severity of AD and diagnosed depression ('categorical' approach). The quality of existing studies was rated and the results were synthesized with a best evidence synthesis. RESULTS: Twenty-four studies fulfilled the inclusion criteria. Nineteen reported results for a continuous approach and seven for a categorical approach. Three of the four high quality studies within the continuous approach did not find a significant association between severity of AD and prevalence of depressive symptoms. None of the three high quality studies using the categorical approach found a significant association between the severity of AD and the prevalence of diagnosed depression. CONCLUSIONS: There is evidence for a lack of association between the severity of AD and the prevalence of comorbid depressive symptoms or diagnosed depression. Until new studies contradict this conclusion, prevention and intervention strategies for comorbid depression in AD should be aimed at all patients irrespective their disease severity.

The effects of psychosocial methods on depressed, aggressive and apathetic behaviors of people with dementia: a systematic review.

OBJECTIVES: This systematic review seeks to establish the extent of scientific evidence for the effectiveness of 13 psychosocial methods for reducing depressed, aggressive or apathetic behaviors in people with dementia. METHODS: The guidelines of the Cochrane Collaboration were followed. Using a predefined protocol, ten electronic databases were searched, studies selected, relevant data extracted and the methodological quality of the studies assessed. With a Best Evidence Synthesis the results of the included studies were synthesized and conclusions about the level of evidence for the effectiveness of each psychosocial method were drawn. RESULTS: There is some evidence that Multi Sensory Stimulation/Snoezelen in a Multi Sensory Room reduces apathy in people in the latter phases of dementia. Furthermore, there is scientific evidence, although limited, that Behavior Therapy-Pleasant Events and Behavior Therapy-Problem Solving reduce depression in people with probable Alzheimer's disease who are living at home with their primary caregiver. There is also limited evidence that Psychomotor Therapy Groups reduce aggression in a specific group of nursing home residents diagnosed with probable Alzheimer's disease. For the other ten psychosocial methods there are no or insufficient indications that they reduce depressive, aggressive or apathetic behaviors in people with dementia. CONCLUSIONS: Although the evidence for the effectiveness of some psychosocial methods is stronger than for others, overall the evidence remains quite modest and further research needs to be carried out.