Advance Care Planning in Huntington Disease: The Elderly Care Physician's Perspective.

OBJECTIVE: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients. DESIGN: A qualitative interview study. SETTING AND PARTICIPANTS: Nine ECPs working in HD-specialized nursing homes in the Netherlands. METHODS: We conducted semistructured interviews with ECPs between June 2018 and July 2020. RESULTS: Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities. CONCLUSIONS AND IMPLICATIONS: ACP in HD can be classified into 2 phases, which differ in ECPs' approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD.

Nursing home residents with Huntington's disease: Heterogeneity in characteristics and functioning.

BACKGROUND: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. OBJECTIVE: Describing patient and disease characteristics, their functioning, and gender differences. METHODS: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. RESULTS: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22-23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. CONCLUSIONS: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.

The Disability Paradox? Trajectories of Well-Being in Older Adults With Functional Decline.

Objectives: The 'disability paradox' (DP) suggests that most older adults maintain subjective well-being (SWB) despite functional decline. However, this may depend the SWB component: positive affect (PA), negative/depressed affect (NA/DA) or life satisfaction (LS). We assessed trajectories of these components in older adults with substantial functional decline. Methods: Data originated from the Longitudinal Aging Study Amsterdam (N = 2545) observed during 1992-2008. Using latent class growth analysis, we distinguished a group with substantial functional decline and examined their SWB trajectories and individual characteristics. Results: The DP occurred more frequently for DA (Men:73%, Women:77%) and LS (Men:14%, Women:83%) than for PA (Men:26%, Women:17%). Higher perceived control (mastery) emerged as the most consistent factor associated with higher odds of the DP. Discussion: We provide a nuanced view of the DP, shifting the question from whether it exists to for which dimension of SWB and for whom it is more or less apparent.

Patient perspectives on advance euthanasia directives in Huntington's disease. A qualitative interview study.

BACKGROUND: Huntington's disease (HD) has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive (AED). Little is known about the perspectives of HD patients on their AED. AIM: To gain insight into patients' views on and attitudes towards their AED, and changes over time. METHODS: A longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (5 outpatient clinic, 3 day care, 1 assisted living facility) who either had an AED or were thinking about drawing it up participated in this study. RESULTS: We identified two themes that characterize patients' perspectives on their AEDs: (1) general character of the AED; (2) uncertainty around their AED. Ad (1) The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad (2) Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED. CONCLUSION: HD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care.

Family caregivers' perspectives on their interaction and relationship with people living with dementia in a nursing home: a qualitative study.

BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness.

Association Between Subjective Remaining Life Expectancy and Advance Care Planning in Older Adults: A Cross-Sectional Study.

CONTEXT: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE). OBJECTIVES: First, to describe the prevalence of ACP with health care providers or written directives ("formal engagement in ACP") and ACP with loved-ones ("informal engagement in ACP") among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP. METHODS: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015-2016. Participants (n = 1585) were aged ≥ 57 years. RESULTS: Median age was 69.4 years (IQR: 64.1-76.7), and median SRLE 25.9 years (17.7-36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93-1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93-0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP. CONCLUSION: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP.

Gaining insight into the views of outpatients with Huntington's disease regarding their future and the way they deal with their poor prognosis: a qualitative study.

BACKGROUND: Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. AIM: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. METHODS: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. RESULTS: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible. CONCLUSIONS: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Caregivers' perspectives on good care for nursing home residents with Korsakoff syndrome.

BACKGROUND: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. OBJECTIVES: The aim of this study was to explore the professional caregivers' perspectives on good care for residents with Korsakoff syndrome. METHODS: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. PARTICIPANTS AND RESEARCH CONTEXT: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. ETHICAL CONSIDERATIONS: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. FINDINGS: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. DISCUSSION AND CONCLUSION: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners' reflection on their own ideas about good care for people with Korsakoff syndrome.

Between Choice, Necessity, and Comfort: Deciding on Tube Feeding in the Acute Phase After a Severe Stroke.

This is an ethnographic study of decision-making concerning tube feeding in the acute phase after a severe stroke. It is based on 6 months of ethnographic research in three stroke units in the Netherlands, where the decision-making on life-sustaining treatment was studied in 16 cases of severe stroke patients. Data were collected through participant observation and interviews. For this article, the analysis was narrowed down to the decision whether or not the patient should receive tube feeding. The data on tube feeding were assembled and coded according to different modes of dealing with this decision in clinical practice, which we refer to as "repertoires." We discerned three different repertoires: choice, necessity, and comfort. Each repertoire structures clinical practice differently: It implies distinctive ethical imperatives, central concerns, sources of information, and temporalities. We hope our findings can improve decision-making by uncovering its underlying logics in clinical practice.

Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.

Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial.

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient-caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge.Implications for rehabilitationCaregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after strokeDoing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situationCaregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team.

Pressure in dealing with requests for euthanasia or assisted suicide. Experiences of general practitioners.

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide (EAS). This study aimed to explore the content of this pressure as experienced by general practitioners (GP). We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: (1) emotional blackmail, (2) control and direction by others, (3) doubts about fulfilling the criteria, (4) counterpressure by patient's relatives, (5) time pressure around referred patients and (6) organisational pressure. We conclude that the pressure can be attributable to the patient-physician relationship and/or the relationship between the physician and the patient's relative(s), the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account.

Awareness and its relationships with neuropsychiatric symptoms in people with Korsakoff syndrome or other alcohol-related cognitive disorders living in specialized nursing homes.

OBJECTIVES: Impaired awareness of functional deficits is often observed in people with Korsakoff syndrome (KS) and may result in refusal of care, although this area has been understudied. This study aimed to investigate levels of impaired awareness and their relationships with neuropsychiatric symptoms (NPS) in people with KS residing in specialized nursing homes. METHODS: A cross-sectional, observational study was conducted among 215 residents with KS or other alcohol-related cognitive disorders. Awareness was measured with the Patient Competency Rating Scale (PCRS). NPS and subsyndromes were measured with the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Adjusted multilevel regression analyses were performed to examine the relationships between the level of awareness and NPS. RESULTS: The mean level of impaired awareness was 39.3 (SD = 19.9) indicating moderate impairment. Twenty-nine percent of the residents had no or mildly impaired awareness; 37% were moderately impaired, and 34% were severely impaired. Residents with moderately impaired awareness showed more severe apathy than residents with no or mildly impaired awareness (difference 1.23; 95% CI 1.02-1.48; p = 0.03). No associations were found between the level of awareness and other NPI outcomes. Cognitive functioning seems to have the strongest impact on the association between level of awareness and NPS in KS residents. CONCLUSIONS: Impaired awareness of functional deficits is highly common in KS residents; however, apart from apathy, is not significantly related with NPS. Additional research should further examine, which interventions are effective in dealing with impaired awareness in these people, particularly when apathy is present.

Involuntary care - capturing the experience of people with dementia in nursing homes. A concept mapping study.

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

[Comprehensive geriatric care for frail elderly at home: a feasibility study]. / Ambulante geriatrische zorg voor kwetsbare thuiswonende ouderen: een haalbaarheidsonderzoek.

OBJECTIVE: To evaluate the feasibility of a study on the content and effect of comprehensive geriatric care (CGC) at home for frail elderly. METHOD: Case managers invited new CGC patients of one care organization for participation in the study. At two moments, questionnaires were conducted on (social) functioning, quality of life, perceived problems, perceived informal caregiver burden, and self-management. Information on received care was collected from the patients' medical records, In addition, a questionnaire was administered to the referring physician. Feasibility was evaluated descriptively on three domains; inclusion, follow up, and data collection. RESULTS: The intended number of 25 participants was not reached, mostly because clients did not comply with inclusion criteria, and because case managers felt uncomfortable asking patients for participation in the study. Of the 14 participants, 12 were followed until the follow-up measurement. Several questionnaire domains appeared difficult to answer for participants. It also appeared difficult to collect information on received care from the medical records. Questionnaire response among general practitioners was 6 out of 11. CONCLUSION: Due to the vulnerability of the targeted group and logistical challenges, the inclusion of participants for the study was more difficult than originally thought. In combination with the difficulties in data collection, this suggests that a large-scale study on the content and effect of CGC is not feasible. Qualitative research methodologies, preferably combined with quantitative methods, offer better opportunities to understand the value of CGC for frail elderly living at home.

Neuropsychiatric Symptoms in People With Korsakoff Syndrome and Other Alcohol-Related Cognitive Disorders Living in Specialized Long-Term Care Facilities: Prevalence, Severity, and Associated Caregiver Distress.

OBJECTIVES: Caring for people with Korsakoff syndrome (KS) residing in specialized long-term care facilities (LTCFs) can be distressing because of challenging neuropsychiatric symptoms (NPS). However, good-quality studies on NPS in this under-researched population are lacking. This study examined the prevalence and severity of NPS in people with KS living in specialized LTCFs and the associated caregiver distress. DESIGN: Cross-sectional, observational study. Data were obtained using structured interviews with care staff, elderly care physicians, and residents. SETTING: Nine specialized LTCFs in the Netherlands. PARTICIPANTS: KS residents admitted for at least 3 months. MEASUREMENTS: The prevalence and severity of NPS were measured with the Neuropsychiatric Inventory-Questionnaire (NPI-Q). The associated caregiver distress was assessed with the NPI Distress Scale (NPI-D) according to the nurse or nurse assistant. RESULTS: Almost all of the 281 residents (96.4%) showed at least 1 NPS and 45.8% showed 5 or more symptoms. Irritability/lability (68.3%), agitation/aggression (58.7%), and disinhibition (52.7%) were most prevalent. Although the mean level of severity for all NPS was relatively low, half of the residents (49.1%) had at least 1 severe NPS. Care staff experienced low levels of distress associated with NPS. CONCLUSION: NPS are highly prevalent in KS residents. Unexpectedly, these did not have any severe impact on residents and care staff. Acquiring more insight into the persistence and course of NPS, and its associations, among KS residents is important to better understand and reduce these symptoms and, ultimately, improve the quality of care for these residents.

Prevalence and severity of behavioural symptoms in patients with Korsakoff syndrome and other alcohol-related cognitive disorders: a systematic review.

OBJECTIVE: Experiences from clinical practice suggest that behavioural symptoms in patients with Korsakoff syndrome (KS) are a frequent problem. Knowledge about behavioural symptoms is important in understanding and managing these symptoms. The aim of this study is to review the prevalence and severity of behavioural symptoms in KS. METHODS: Relevant articles were identified by searching Medline (PubMed), PsycINFO, Embase and CINAHL up to 4 June 2014. Two reviewers independently selected the studies, extracted their baseline data and assessed methodological quality using a standardized checklist. RESULTS: Fifteen studies fulfilled the inclusion criteria. A diversity of diagnoses was used indicating that KS and other alcohol-related cognitive disorders and terms were used interchangeably. None of the studies were primarily designed to estimate the prevalence or severity of behavioural symptoms in patients with KS. Most studies had serious methodological limitations. The reported prevalence estimates of behavioural symptoms in the included studies varied strongly. Most prevalent were depressive symptoms and disorders (2-50%, median 27%) and agitation and aggression (10-54%, median 27%). None of the reported, mean severity estimates met pathological thresholds. The highest severity estimates were found for apathy. CONCLUSIONS: Good quality studies on behavioural symptoms in patients with KS are lacking. Observational research designed to provide reliable estimates of the prevalence and severity of behavioural symptoms in patients with KS is needed. This could improve understanding and managing these symptoms and help care staff to better support the needs of this specific patient group. Copyright © 2016 John Wiley & Sons, Ltd.

Is an unhealthy work environment in nursing home care for people with dementia associated with the prescription of psychotropic drugs and physical restraints?

BACKGROUND: Research showed that long-term care facilities differ widely in the use of psychotropic drugs and physical restraints. The aim of this study is to investigate whether characteristics of an unhealthy work environment in facilities for people with dementia are associated with more prescription of psychotropic drugs and physical restraints. METHODS: Data were derived from the first wave (2008-2009) of a national monitoring study in the Netherlands. This paper used data on prescription of psychotropic drugs and physical restraints from 111 long-term care facilities, residing 4,796 residents. Survey data of a sample of 996 staff and 1,138 residents were considered. The number of residents with prescribed benzodiazepines and anti-psychotic drugs, and physical restraints were registered. Work environment was assessed using the Leiden Quality of Work Questionnaire (LQWQ). RESULTS: Logistic regression analyses showed that more supervisor support was associated with less prescription of benzodiazepines. Coworker support was found to be related to less prescription of deep chairs. Job demands and decision authority were not found to be predictors of psychotropic drugs and physical restraints. CONCLUSIONS: Staff's job characteristics were scarcely related to the prescription of psychotropic drugs and physical restraints. This finding indicates that in facilities with an unhealthy work environment for nursing staff, one is not more likely to prescribe drugs or restraints. Further longitudinal research is needed with special attention for multidisciplinary decision making - especially role of physician, staff's knowledge, philosophy of care and institutional policy to gain further insight into factors influencing the use of psychotropic drugs and restraints.

[Feasibility of a geriatric multidisciplinary outpatient rehabilitation program-lessons learned]. / Haalbaarheid van een poliklinisch geriatrisch Revalidatieprogramma - lessen uit een pilotproject.

OBJECTIVE: To describe the feasibility of a geriatric multidisciplinary outpatient rehabilitation program, developed in Vivium Naarderheem. DESIGN: A prospective pilot study using a pretest-posttest design with measurements of the level of (social) participation, health related quality of life, and caregiver strain at the start (T0) and the end (T1) of the program. Feasibility was studied by structured interviews with participants, professionals and management. RESULTS: We included 18 patients, fifteen of which were admitted after stroke. The program was highly appreciated by patients. Management and professionals thought that factors of influence on the program were transportation of patients, adequate planning and deployment of staff, and adequate financing. The program was regarded feasible. Although some patients reported a higher level of participation, the only statistically significant finding was a deterioration in self-perceived health. CONCLUSION: In this study most of the patients participated after stroke. The geriatric multidisciplinary outpatient rehabilitation program, following inpatient geriatric rehabilitation, was highly appreciated by patients, and considered feasible by management and professionals.

[Home after a stroke; 'that's when it really begins'. A qualitative study into the needs for aftercare of stroke patients after being discharged home]. / Thuis na een CVA: 'Dan begint het pas'. Een kwalitatief onderzoek naar de behoefte aan nazorg van CVA-patiënten na terugkeer naar huis.

AIM: To explore stroke patients needs of care after discharge from hospital or rehabilitation facility. METHOD: Semi-structured interviews with twenty stroke patients and their partners in the region Midden-Kennemerland in the Netherlands. RESULTS: 'That's when it really begins'; at home it becomes clear what the real consequences of the stroke are on daily life. After returning home patients would have liked to (1) have had more information/support and they have a need for support for a long time after their stroke; (2) have had the possibility to get support later on (after having said 'no' in the first place). On the other hand there are (3) patients who are inclined to search for solutions by themselves. CONCLUSION: Only after returning home stroke patients and their partners can really assess what their need for care is. Therefore the need for care of stroke patients should be assessed after a period of time after the patients return home. The care should be available for a long time after the stroke. Because patients don't realize that they can get help for the neuropsychological consequences, it is important that the initiative to organize the care lies in the hands of the caregivers.