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. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).

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.

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 character-istics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.

Background Advance care planning (ACP) is paramount for nursing home residents, who are typically frail and of old age. In The Netherlands, medical care for nursing home residents is provided by so-called 'elderly care physicians' (ECPs). This study aims to gain insight in how ECPs practice ACP with nursing home residents in The Netherlands and their surrogate decision makers, in order to get a comprehensive understanding of ACP in the context of daily clinical routine. Methods We conducted an ethnographic study at 8 locations of 2 nursing home organizations in The Netherlands. In total, 40 days of observation took place in February-March 2020 and August-November 2020 on wards for long-term stay. Field notes and day reports were written by the observer, who had regular debriefings with a senior researcher. After the observations, interviews were conducted with participating physicians (member check). Day reports and verbatim interview transcripts were coded and discussed by 3 researchers until consensus was reached. Results ACP discussions were observed in 33 care plan evaluations, 6 nursing home admittances, and 6 other meetings between a physician and a nursing home resident's surrogate decision maker. Observations showed that ACP was a regular agenda item at biannual care plan evaluations. However, ACP discussions were short and did result in non-explicit treatment orders such as no hospital admission if the prognosis is bad. ACP discussions were mostly used to prepare residents and their surrogates for decisions on limiting medical treatments in the future. Conclusions This ethnographic study shows that ACP discussions are common in nursing homes in The Netherlands. The present study did not provide enough longitudinal data to draw conclusions on the effect of the observed ACP discussions on actual treatment decisions in the future. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.

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.

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.

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. J Pain Symptom Manage 2021;62:757-767. (c) 2021 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

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.

Background For patients with Huntington’s disease in the Netherlands, one way of dealing with their poor prognosis, is by drafting up an advance euthanasia directive (AED). Little is known about the perspectives of patients on their AED. Aims To gain insight into patients’ motives for drafting up an AED and to explore the expectations patients have of their AED. Methods A qualitative longitudinal study design with 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who received outpatient care who either had an AED or were thinking about drafting it up participated in this study. Results Three themes were identified: the extent to which respondents (1) based their AED on personal values; (2) were aware that their AED could change over time; and (3) were guided by examples of family members with HD in drafting up their AED. Conclusions Our findings suggest that the personal character of the AED usually is limited and patients generally have doubts concerning the invariability of their AED in the future. Familiarity with HD in the family can play a role in drafting up an AED.

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.

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.

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.

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.

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. Clarification of underlying normative principles of ACP is crucial in understanding both motivation and hesitation to initiate ACP among health care professionals and patients. This study aims to clarify normative principles of ACP and to get insight in the range of normative principles that comprise the legitimacy of ACP. Methods Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library, using various search terms for ‘ACP’ and ‘ethics’. 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. Sensitivity analysis was performed to guarantee that unfrequently mentioned goals and objections were found as well. 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 211 codes concerning normative principles of ACP. We identified 5 main normative principles for ACP: respecting individual patient autonomy, improving quality of care, strengthening relationships, improving quality of life, and reducing overtreatment. Conclusion Defining normative principles of ACP should serve as a starting point when developing ACP interventions and selecting outcome measures to evaluate ACP interventions.

Oefenen met een naaste (caregiver-mediated exercises, CME) in aanvulling op de reguliere therapie is een nieuwe vorm van oefenen voor patiënten met een beroerte. Deze exploratieve kwalitatieve studie, onderdeel van de CARE4STROKE trial, richt zich op de ervaring van het samen oefenen. De onderzoeksvragen waren: 1) Hoe oefenen patiënt en naaste samen? en 2) Waar leidt het samen oefenen toe, behalve tot meer oefenmomenten? Er vonden semigestructureerde interviews plaats met zeven patiënten en zeven naasten uit de CARE4STROKE-interventiegroep. Analyse vond plaats met inductieve thematische analyse. We vonden drie manieren waarop de patiënt en naaste samen oefenden: 1) de controle lag bij de patiënt; 2) er was sprake van samenwerking; 3) de naaste nam de verantwoordelijkheid (in het verlengde van de rol als mantelzorger). De meerwaarde van het samen oefenen is in drie thema’s in te delen, namelijk: 1) actieve betrokkenheid leidt tot personalisatie, 2) voorbereiding op de thuissituatie en 3) betrokkenheid op elkaar. Geconcludeerd werd dat er verschillende rolverdeling bestaan bij het oefenen met een naaste. Het is van belang dat de fysiotherapeuten die de koppels begeleiden zich bewust zijn wat voor effect CME kan hebben op de belasting van de patiënt of de naaste. De meerwaarde van het samen oefenen reikt verder dan een intensivering van de therapie. Door de actieve betrokkenheid kan samen oefenen leiden tot een individualisering van het behandelplan en een betere voorbereiding op ontslag naar huis.

Background Huntington's disease (HD) is an inherited neurodegenerative disease, characterized by movement disorders, psychiatric symptoms, and cognitive decline. In the later stages of the disease patients often are no longer able to express their wishes for care, because of problems with communication and cognitive decline. Little is known about advance care planning, advance directives, and end of life care for HD patients. Aims: In this study we aim to explore HD patients' perceptions of their future, end of life, and end of life care, and whether these perceptions change over time. Furthermore, we aim to study the views of elderly care physicians on advance care planning and end of life care for HD patients. Methods A qualitative approach is adopted using semi-structured interviews. Approximately 10–15 HD patients will be interviewed every 6 months for a period of 2 to 2.5 years. Topics are: quality of life, the future, end of life, death, advance directives and talking to others about these subjects. In addition, approximately 10 elderly care physicians will be interviewed once. The physicians will be encouraged to describe their experiences with advance care planning, end of life care, patients' decision making capacity, advance directives, and euthanasia in HD. All interviews will be audio recorded and transcribed verbatim. Atlas.ti will be used for analysis. Results and conclusions Data collection started in 2017 and results are expected in 2020. The results of this study will provide valuable information on advance care planning and end of life care for HD patients.

De haalbaarheid onderzoeken van een studie naar de inhoud en het effect van ambulante geriatrische zorg (AGZ) voor kwetsbare ouderen.

Background Care for patients with Huntington’s disease (HD) in long-term care facilities (LTCFs) is complex and practice-based, consisting of interventions developed through years of experience. Little is known about the functional status, quality of life of these patients and end-of-life care, particularly advance care planning and patients’ perceptions of end-of-life. Aims Gain insight in motor, psychiatric, and cognitive symptoms, functional ability and quality of life of HD patients living in specialized LTCFs. Gain insight in perceptions of HD patients concerning their future and end-of-life, and whether these perceptions change over time. Gain insight in views of elderly care physicians on advance care planning and palliative care for HD patients. Methods This study consists of two parts: 1) a cross-sectional, descriptive study 2) a qualitative study. Results/outcome Data on the functional status and quality of life are collected in the period September 2017 – May 2019. We aim to include 250 HD patients living in 9 LTCFs in the Netherlands. The data will be obtained using observation scales and questionnaires. Data on end-of-life care are obtained by conducting multiple in-depth interviews every 6 months for the period of 2 to 2,5 years with 10–15 HD patients, and one in-depth interviews with elderly care physicians. Results are expected in 2021. Conclusions This study will provide valuable information on the functional status, quality of life and end-of-life care of HD patients living in LTCFs. Results may provide an evidence base to develop specific guidelines for care of institutionalized HD patients.