Professional Caregivers Research Articles

Perspectives of people with young-onset dementia on future quality of life: a qualitative interview study with implications for advance care planning

Introduction:Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.Methods:Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.Results:Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.Discussion:Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

Reminiscence therapy and dementia care in the Pacific island of Guam

AbstractBackgroundPersons living with dementia often find it easier to remember experiences from long ago—including memories from their youth and early adulthood—than to recall recent events, such as what they did that week or even earlier that day. As a result, trying to navigate the present can be stressful and overwhelming, while reminiscing about the past can be a comforting experience. Connecting with valued memories from the past often helps persons living with dementia maintain their identity, preserve their sense of self, and enhance their overall quality of life. Reminiscence therapy was developed as a way to achieve these benefits by engaging older adults in the exploration of cherished memories to improve cognitive functioning and psychological well‐being. In recent years, reminiscence therapy has become an effective and popular approach to providing therapeutic support for persons living with dementia.MethodTraining in reminiscence therapy was provided to family and professional caregivers in the Pacific island of Guam through a weekly online support group. Training sessions were designed to help caregivers learn to use reminiscence therapy with persons with dementia in culturally sensitive ways reflecting the oral storytelling traditions of Pacific island cultures. Session topics addressed: (1) the benefits of reminiscence for persons with dementia, from maintaining memory health to building confidence and self‐esteem; (2) guidance from local writers and historians on how to talk with older adults about their life histories, including questions to ask and ways to evoke favorite memories; (3) the use of historical photos from Guam as conversation starters for older adults with memory loss; and (4) sharing stories about growing up in Guam in the 1930s, '40s, ‘50s, and ‘60s, along with readings from memoirs based on this period.ResultParticipants reported highly positive experiences with implementing reminiscence therapy with persons with dementia in their care. The techniques helped persons with dementia to relive beautiful memories and to share these memories with their families.ConclusionProgram outcomes indicate that online training in reminiscence therapy is an effective way to teach caregivers skills to promote memory health and psychological well‐being for persons living with dementia.

Home‐based solutions for dementia management: Results from a survey of dementia caregiver

AbstractBackgroundLiving with dementia affects almost every aspect of life. Medical care concepts, however, focus mainly on biological aspects of the disease so that many caregivers have to find solutions themselves for dealing with the other aspects of daily life. Aim of the present study was to identify such solutions.MethodWe conducted a survey with seven groups of stakeholders in dementia care, (1) caring spouses, (2) caring family members, (3) professional caregivers, (4) volunteering/nonprofessional caregivers, (5) therapists, (6) counselors for people with dementia, and (7) people with dementia themselves. A total of 131 participants reported their experiences and perceptions in structured interviews.ResultWe will report on home‐based solutions for dementia management our participants have reports. Specifically, we report on the type of solutions, by whom they are conducted, how often they are applied, how they are financed, and what positive effects are experienced. Further, we report on what our participants perceived as most effective for increasing well‐being, reducing cognitive decline, and dealing with behavioral problems or with depression.ConclusionOur results indicate a number of useful home‐based solutions for people with dementia. Given the many challenges that come with dementia, care concepts incorporating such solutions are urgently necessary to improve well‐being of those living with dementia.

P131: Co-creating good care in the care home: perceived roles and responsibilities

Background:An intersubjective understanding of mutual roles and responsibilities in the care process is needed to effectively co-create good care for residents of the care home.Objective:This study offers insight into the perspectives of professionals, informal caregivers, and residents on their own role and responsibilities and that of others, and examines how this affects their co-creative relationships.Methods:We conducted semi-structured interviews with professionals (n=9), informal caregivers (n=10), and residents (n=10) from two psychogeriatric wards. An inductive thematic analysis was then performed, using Margaret Urban Walker’s expressive- collaborative model of morality (1998) as a sensitizing concept.Results:Professionals and informal caregivers both view themselves as the main responsible for the resident’s wellbeing. Whereas professionals see themselves as experts on care for residents with psychogeriatric issues, informal caregivers see themselves as experts on the resident as a person. From these roles, both profess to know what is best for the resident. Further, professionals see themselves as someone naturally deserving trust due to their expertise, whereas they are seen by informal caregivers as someone who needs to win their trust. Informal caregivers see themselves as a warrantor for the residents wellbeing, whereas they are seen by professionals as someone who needs to relinquish control over care, so they can return to being the resident’s loved one. Although both professionals and informal caregivers ascribe a central role to the resident in the care process, their behaviors unintentionally urge residents towards a more passive role. Residents who are not generally compliant to the norms of the care home appear to view themselves as rebels. These (and more) differences in perceived roles and responsibilities lead to tensions in the co-creative relationships between professionals, informal caregivers, and residents.Conclusion:Professionals, informal caregivers, and residents have differing perspectives on mutual roles and responsibilities in the care process, which hampers their co-creation of good care. This study implies that interventions aimed at improving the co-creation of good care may be focused on those involved first becoming acquainted with each other’s perceived roles and responsibilities.

Personalised activity cards, goal‐directed daily (physical) activity and rest‐activity rhythm in institutionalised persons living with dementia

AbstractBackground(Physical) inactivity and disturbances in the rest‐activity rhythm (e.g. more daytime sleeping and more night‐time restlessness) are common in institutionalised persons living with dementia (iPwD). Both are associated with worse quality of life (QoL), which underlines the need for non‐pharmacological interventions. The purpose of this study was to examine if the implementation of personalised activity cards (PACs) could enhance the amount of time spent on goal‐directed daily (physical) activities and improve the rest‐activity rhythm in iPwD.MethodThis prospective longitudinal quasi‐experimental multicentre study was conducted on 11 wards in 8 nursing homes in the Netherlands. The intervention consisted of PACs, a structured method for offering personalised activities based on input from (professional) caregivers. The PACs were implemented on 5 wards. The other 6 wards received care as usual (control group). Intervention compliance was checked every two weeks with an online survey. Outcome variables included minutes spent on goal‐directed daily (physical) activity as measured with an adjusted version of the Physical Activity Survey in Long‐Term Care (PAS‐LTC; observations by researchers), and rest‐activity rhythm was assessed using Actiwatch activity monitors. Outcomes were assessed at baseline (T0), and after 12‐15 weeks (T1).ResultWe analysed the data of 84 iPwD; intervention group: n = 35, control group: n = 49 (Table 1). Intention‐to‐treat mixed model analyses showed no significant interaction effects of the intervention (group × time) on goal‐directed daily (physical) activity and rest‐activity rhythm variables (Table 2). One ward in the intervention group did not implement the PACs. The four wards that did implement the PACs reported diverging percentages of the execution of planned activities, even as low as 33.5% (range 33.5‐74.2%). The most reported reason for not executing activities on the PACs was that employees were too busy.ConclusionContrary to our expectations, implementing PACs did not show any effect on goal‐directed daily (physical) activity in iPwD. The lack of improvement in activity level might be an explanation for the lack of improvement in rest‐activity rhythm. These findings support previous research that it can be difficult to implement new methods in the nursing home environment, and underline the importance of more implementation research

Digital technologies in ISupport implementation in Russia

Objective:More than 1.5 million people have been diagnosed with dementia in Russia. Although we have all the necessary doctors and medicines, there is no clear, expert-approved special care system for people with dementia: caregivers do not have a manual for working with people with cognitive impairments. Our adapted web-guide and mobile application aim to educate professional and informal caregivers, and society about the principles of taking care for people with dementia, it’s any age prevention, creating an environment of equality.The objective of this study is to explore the level of raising awareness of the Russian society about dementia after the implementation of our digital technologies.Methods:Conducting an in-depth expert interview and a focus group with caregivers who got acquainted with the adapted ISupport guide were applied in order to evaluate the appropriateness of care practice for people with dementia in terms of medical standards and to uncover practical infelicities and improve them. Collected data and respondent’s replies analyses, content-analysis that we made became the basic principles of our new application. The quantitative method allows us to track user activity and assess the level of social involvement in dementia issues. Moreover, we have collected caregivers' opinions after they used our application and web-version for the first time by virtue of a qualitative method.Results:We have reached various aims during our ISupport implementation and working on the research project. First, the number of users of our mobile application is steadily growing (+ 4 people per day at the launch stage). Second, we have received a lot of feedback about our ISupport web version: “it is easy to use; it has a good design, sipid content and a logical structure, which in turn facilitates the process of caring for a person with dementia. Third, medical experts approved our adaptation, web-version and mobile application and recommended it for use in Russian-speaking countries.Conclusion:we have come to both theoretical and practical results of ISupport implementation in Russia and successfully launched two digital projects. Thanks to the work we have done the dementia issue in Russia will become more popular among society and will prevent the disease of thousands of people.

The influence of everyday acoustic environments on the challenging behaviour in dementia: a participatory observation study in Nursing Homes

AbstractObjectiveDementia is a progressive illness characterized by cognitive and functional decline and often co‐occurs with a behaviour change. ‘Challenging behaviour’ (CB) is a group of behaviours, reactions and symptoms due to dementia, which can be challenging for the (professional) caregivers. The study aims to research the influence of acoustic on CB in people with dementia (PwD).DesignAn ethnographic design was used to study the daily life of PwD in their nursing homes with a specific focus on how people react to everyday environmental sounds.Setting/participantsThirty‐five residents were included in the sample based on a purposeful, homogeneous group characteristics sampling. Empirical data were collected using 24/7 participatory observations. The collected data were analyzed using a phenomenological‐hermeneutical Method: a naïve understanding, a structural analysis, and a comprehensive understanding.ResultsThe onset of CB depends on whether the resident feels safe and is triggered by an excess or lack of stimuli. The excess or shortage of stimuli and whether and when it affects a person is highly personal. It depends on various factors, such as the person’s state and the time of day. In addition, the nature of the stimuli, familiarity or strangeness is also a determining factor for the onset and progression of CB.ConclusionCB is an indirect consequence of something that threatens the well‐being of the PwD. This unsettling feeling can find its cause in the acoustic environment. The results can form an essential basis for developing soundscapes to make the PwD feel safe and reduce CB.

P167: Informal activities may explain improved depressive symptoms and resilience in nursing home residents: A cross-sectional study in Dutch and Flemish nursing homes

Objective:Pleasant, meaningful, recreational or other activities are often used in depression treatment in nursing home (NH) residents. Residents may also undertake such activities alongside or without a treatment (informal activities). It is not clear if such informal activities can partially explain treatment effects. Our aim was to explore associations of depressive symptoms and resilience with informal activities in residents.Methods:We calculated product scores of frequency and pleasantness for activities from 18 activity clusters in NH residents (AIM, Activities to Improve Mood inventory, Knippenberg et al., in prep). The Geriatric Depression Scale, 8 items (GDS-8, Jongenelis et al., 2007) and the Brief Resilience Scale (BRSnl, Dutch translation, Leontjevas et al., 2014) were administered when interviewing residents. Professional caregivers filled out the Nijmegen Observer Rated Depression scale (NORD, Leontjevas et al., 2011). Spearman’s rho’s of 0.20 to 0.39 and of 0.40 to 0.60 were regarded as weak and moderate, respectively.Results:277 Dutch speaking NH residents (male, N=104, 38%), from Flanders Belgium (male, N=137, 49.5%) and the Netherlands participated in the study. We found positive weak associations between the self-reported and observer-rated depression scales (GDS-8 and NORD), and between the AIM total score and resilience (BRSnl). Negative weak associations were found for both depression scales and resilience, and for the depression scales and AIM. Individual AIM clusters showed positive weak to moderate associations between resilience and activities stimulating cognition (e.g. reading, puzzling), activities related to nature (e.g. walking in a park, activities with animals), or doing something meaningful for others (e.g. helping with daily routines or volunteering). Regarding depression, next to the three mentioned clusters, negative weak to moderate associations were also found for craft activities, social activities, and showing a positive mindset (e.g. humour, giving compliments).Conclusion:The results underscore the value of activities that residents may undertake on their own alongside or without a treatment. More research is needed to understand whether informal activities alongside or without a treatment may explain intervention effects (e.g. placebo effects) on depression or resilience, and how these activities may be used to improve treatment protocols.

P95: Caregiver Perspectives on the Meaningful Change in Agitation Behaviors Measured by the Cohen-Mansfield Agitation Inventory

Objective:Agitation is a common neuropsychiatric symptom in patients with Alzheimer’s dementia, resulting in significant burden to patients and caregivers. This study was conducted to better understand caregiver perspectives on the frequency and severity of agitation behaviors, captured by the Cohen-Mansfield Agitation Inventory, and to assess what constitutes a meaningful change in these behaviors.Methods:This was a qualitative, non-interventional, descriptive study conducted in the United States. Semi-structured 1:1 interviews were completed with non- professional caregivers of patients with Alzheimer’s disease (AD) (i.e., family caregivers providing unpaid, informal care) who met the following inclusion criteria: ≥21 years old; caring for an individual with clinically confirmed AD; noticed agitation behaviors including emotional distress, excessive movements, verbal aggression, physical aggression; spent ≥4 days a week for ≥2 hours with the person with AD; and willing to participate in the virtual interview in English. Interview transcripts were analyzed thematically through detailed line-by-line inductive and deductive coding approaches using the ATLAS.ti software.Results:Thirty caregivers participated. Participants’ mean age was 64 (±13) years. Most participants were Caucasian/white (77%), non-Hispanic or Latinx (97%), and female (70%). Approximately half were providing care to their spouse (53%), and the remainder for a parent or parent-in-law. Several key themes on what constitutes ‘meaningful change’ emerged. All caregivers tied a meaningful change in agitation behaviors to a change in behavior frequency (becoming less frequent or stopping entirely). Beyond frequency, themes describing meaningful change included: change in behavior intensity; apparent intent to disturb or cause harm to self or others; potential to cause serious harm; amount of harm caused; more “normal” behavior; shorter episode duration; and less worry, frustration, or isolation. Additionally, a shift from verbally aggressive behavior to physically aggressive behavior was considered an escalation in agitation severity and meaningful worsening. Thus, unique to physical aggression, a meaningful change was described as a de-escalation to verbal aggression.Conclusion:Caregivers report several themes on what constitutes meaningful improvement or worsening of agitation behaviors in individuals with AD. A change in the frequency of agitation behaviors was consistently reported by caregivers as important, with decreased frequency perceived as a meaningful improvement.

P137: Cost Considerations of Untreated Agitation: Direct, Indirect, and Intangible

OBJECTIVE:In the past decade, researchers and advocates have taken important steps toward understanding the full costs of Alzheimer’s disease and related dementias. However, our current approach to framing these costs does not fully consider the behavioral symptoms of dementia, notably agitation. Agitation in Alzheimer’s disease contributes to negative social and financial outcomes for people with the condition, their care partners, and health systems. When left untreated, the negative impact of these outcomes is exacerbated, yet the full scale of this impact is unknown. “Cost Considerations of Untreated Agitation” seeks to propose a framework to help in evaluating the variables that impact these costs.METHODS:We created a model that investigates each stage of Alzheimer’s disease with agitation. This model assesses direct, indirect, and intangible costs of the disease. Direct costs include professional caregiving, non-pharmacological intervention, nursing home costs, healthcare professional consultations, and hospitalizations. Indirect costs included loss of income and value of unpaid caregiving. Intangible costs include the mental health impact of agitation on individuals living with Alzheimer’s and their care partners. Additionally, we used quality-adjusted life years to measure disease burden and health outcomes. Finally, we leveraged qualitative research to overlay the experience of care partners and individuals with lived experience to bring their voice to this work.RESULTS:Results are a tentative framework and describe what additional research and input is necessary in order to create a version with which one can assess the comprehensive costs of untreated agitation in Alzheimer’s. This framework will include perspectives and feedback from individuals with lived experience, care partners, and key opinion leaders in Alzheimer’s research from across the world.CONCLUSION:Agitation has severe consequences on individuals, families, and health systems. Oftentimes one of the first symptoms of Alzheimer’s or dementia, agitation can increase the caregiving responsibilities, trigger placement into nursing homes, and cause severe emotional and physical toll on care partners. We cannot understand the full costs of dementia or AD until we account for untreated agitation vis-à-vis a multi-symptom assessment, therefore an accepted framework is necessary in order to fully consider the costs of untreated agitation.

How to attune to spiritual sources of strength of people with mild to moderate dementia

ABSTRACT People with mild to moderate dementia often struggle with disorienting and alienating effects of the disease. Being attuned to spiritual sources of strength has been shown to be helpful in facing these challenges. In current dementia care practice and literature however, not enough attention is paid to fostering this type of connection. Our research offers a first overview of spiritual strength attunement in dementia. Results make clear how dementia impacts people spiritually, what the properties are of strength attunement and how professional caregivers foster this type of attunement with their clients. Insights are summarized in an integrated model.

I saw myself as an important piece of a jigsaw puzzle: Parents experiences of their child's anaesthesia induction.

Anxiety in children, as well as their parents, is common in high-tech environments such as an operating room. This study aimed to describe parents' experiences of being present when their child is being anaesthetised. Twenty-four parents were interviewed and data were analysed using a descriptive phenomenological approach. Findings show that being present at a child's anaesthesia and surgery is a long, continuous process that begins at home. Parents struggle to face strong emotions in a special and frightening environment, focussing on their child's well-being while trying to remain control in this situation. Security and trust are vital, but it's challenging to relinquish control in an uncertain situation. Professional caregivers can promote trust and participation, but an awareness that something can go wrong affects parents on a deep level. In conclusion, parental presence at induction of anaesthesia is important but can be overwhelming and anxiety-inducing for some parents. Parents should be seen as a resource rather than a disturbance. Overall, the healthcare system should prioritise parents' involvement and seek to create an environment where they feel supported and included.

Person-centred caregiver singing for people living with dementia in South Africa: A mixed methods evaluation of acceptability, feasibility, and professional caregivers' experiences.

Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing. This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa. A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability. Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable. Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector. Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research.

Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study

BackgroundAlthough apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs).MethodsDescriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders.ResultsThree themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one’s expectations, and appreciating little successes.ConclusionsWhen addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.

Implementation of fall sensors in long-term care : An interview study to identify promoting and inhibiting factors from the perspective of professional caregivers

Digital support systems are becoming increasingly more important in long-term inpatient care facilities. Welfare technologies have the potential to make avaluable contribution to maintaining independence in advanced age. At the same time the technologies can support professional caregivers. The aim of the study was to describe the expectations and experiences with anew technology, using the example of afall sensor system, from the perspective of professional caregivers. We used aqualitative design with semistructured interviews in two long-term inpatient care facilities. In one facility, three individual interviews took place, while in the other long-term care facility, agroup interview with three nursing professionals was conducted. Additionally, one individual interview was conducted with aperson in aleadership role in each facility. The time from implementation of the fall sensors to the interviews was between 1 and 3 months. Data were analyzed using qualitative content analysis in MAXQDA. The study demonstrated that there was acorrespondence between expectations of and retrospective experiences with the new technology among professional nurses. The main facilitating factors of the implementation that were identified were timely information about the risk of falling or afall that has occurred, maintenance of residents' autonomy and freedom of movement as well as the enhancement of the sense of security among nursing professionals and the associated psychological relief effect. The inhibiting factors of the implementation were compulsory presetting, false alarms and faulty handling of the technology due to missing knowledge.

„Es ist eine unserer Hauptaufgaben, die Sicherheit der Patienten zu gewährleisten.“ – Ergebnisse einer qualitativen Studie zur Gewährleistung von Sicherheit in der beatmungsspezifischen Hilfsmittelversorgung

BackgroundMaintaining safety is critical in home mechanical ventilation (HMV). It is co-determined by the availability of reliable technical aids and their correct application. Ensuring safe aid supply is part of the aid providers'́ legal mandate. However, whether and how this is achieved is largely unknown. Therefore, the tasks of technical aid providers, associated requirements and challenges with special regards to educational and safety aspects were investigated. MethodsFor this purpose, episodic interviews were conducted between July and December 2020 with a purposive sample of field representatives of eleven technical aid providers. Between one and six persons participated in each of the interviews, resulting in a total sample of 25 persons (14 field representatives without management function, ten with management function, one director). Given the conditions during the COVID-19 pandemic, six interviews took place face-to-face and five as web meetings. Interviews were analysed using qualitative content analysis. ResultsFrom the interviewees'́ perspective, the most important safety-related measure is the legally required and individually tailored initial instruction in a safe aid application. Additional safety-related tasks comprise counselling, e. g. for prescribing physicians and users (patients, relatives, nursing service employees), regular home visits, and the provision of a technical emergency service. Interviewees indicate that safety risks emerge primarily from a lack of skills and a high staff turnover among professional caregivers. This, they state, challenges building up and maintaining competencies among nursing staff. Other safety risks arise from healthcare fragmentation, lacking coordination, cooperation, and accountability of the professionals involved. Respondents address these challenges pragmatically by providing additional services, like ongoing caregiver training, care coordination and support roles. DiscussionMaintaining safety in ventilation-associated technical aid supply must be considered a crucial component of the overall HMV care processes, in which safety currently cannot be taken for granted. Field representatives of technical aid providers address the existing challenges with selective and intuitive strategies, some of which exceed their legal mandate. ConclusionImproving safety in home care can be supported by establishing Advanced Nursing Practice roles in nursing services. The systematic further development of roles and tasks of staff of technical aid providers should be clarified within an overarching discourse on viable approaches to cross-sectoral and interprofessional HMV care.

Entrusting life to professionals: A phenomenological hermeneutical study of older persons' participation in prehospital emergency care involving municipal home care and ambulance services.

Participation in care is considered to promote safe and qualitative care. Care-dependent older persons ageing in place have increased emergency care needs, which initiate inter-organisational collaboration involving municipal home care and ambulance services. Previous research concludes that uncertainties exist regarding what participation in care means in clinical practice, which necessitates the need to illuminate the phenomenon for older persons in critical life situations. This study aimed to illuminate meanings of participation in prehospital emergency care from the perspective of care-dependent older persons experiencing acute illness at home. This study has a qualitative design with a lifeworld approach. A phenomenological hermeneutical method was used to analyse transcribed telephone interviews with eleven care-dependent persons aged 70-93 years. Care-dependent older persons' participation in prehospital emergency care means 'Entrusting life to professional caregivers' when being in helpless solitude and existentially unsafe, which emphasises a deepened interpersonal dependence. Meanings of participation in care from the perspective of older persons involve Being reassured in togetherness, Being pliant in trust of emergency expertise, Being enabled through the agency of professional caregivers, and Encountering readiness in the emergency care chain. Care-dependent older persons' participation in prehospital emergency care is existential and involves interpersonal dependence. Togetherness brings reassurance, safety and opportunity for emotional rest while accessing the professional caregivers' power, competence and abilities which provide opportunities for existence and movement towards well-being and continued living. Prehospital emergency care from the perspective of care-dependent older persons transcends organisational boundaries and includes the municipal mobile safety alarm service. The involved municipal and regional organisations need to provide support by implementing lifeworld-led care models and care alternatives that enable professionals to recognise the existential dimension of participation in care.

65 Learning Ability in Relation to Everyday Activities in Patients with Korsakoff’s Syndrome, Other Alcohol-Related Cognitive Impairments, or Uncomplicated Alcohol Use Disorder

Objective:Assessment of learning potential in patients with cognitive disorders in individuals with alcohol-related cognitive disorders (including Korsakoff’s syndrome; KS) is highly relevant, as this may help to tailor interventions, guide treatment planning and help to optimize care. However, studies on assessing learning potential or learning ability using neuropsychological assessment in relation to changes in everyday activities during the course of treatment are scarce. In this study we examined whether verbal and visuospatial learning curves could be used as an index of learning ability in relation to everyday activities before and after a treatment program.Participants and Methods:We examined the episodic learning ability of patients with KS (N=137), other alcohol-related cognitive impairments (ARCI; N=164), and uncomplicated alcohol use disorder (AUD; N=49). For this, we calculated the learning curves for the California Verbal Learning Test (CVLT) and the Location Learning Test - Revised (LLT-R) and examined their association with ratings of everyday activities by the patient and his/her professional caregiver using the Patient Competency Rating Scale (PCRS) before and after a 10-12 week treatment program following admission to the Korsakoff Centre.Results:For both verbal and visuospatial memory, the AUD group had a steeper learning curve than the ARCI patients, who in turn had a steeper learning curve than the KS group (p<.01). While the VLGT total score was related to the PCRS in all patient groups (Pearson r>.38, p<.01), this was only the case for the KS group for the LLT-R total score (r>-.29, p<.01). However, the learning curve estimates of both tests were neither related to the PCRS absolute scores (for patients and caregivers, before and after treatment) nor to the APCRS scores during the course of the treatment program.Conclusions:Episodic learning ability, as measured with the learning curves of the CVLT and LLT-R, were unrelated to the patients everyday activity level as measures by the patients themselves or their professional caregiver. The results will be discussed in relation to other tools for assessing the learning potential of cognitively impaired patients, such as dynamic testing.

The geometry of synchronization: quantifying the coupling direction of physiological signals of stress between individuals using inter-system recurrence networks.

In the study of synchronization dynamics between interacting systems, several techniques are available to estimate coupling strength and coupling direction. Currently, there is no general 'best' method that will perform well in most contexts. Inter-system recurrence networks (IRN) combine auto-recurrence and cross-recurrence matrices to create a graph that represents interacting networks. The method is appealing because it is based on cross-recurrence quantification analysis, a well-developed method for studying synchronization between 2 systems, which can be expanded in the IRN framework to include N > 2 interacting networks. In this study we examine whether IRN can be used to analyze coupling dynamics between physiological variables (acceleration, blood volume pressure, electrodermal activity, heart rate and skin temperature) observed in a client in residential care with severe to profound intellectual disabilities (SPID) and their professional caregiver. Based on the cross-clustering coefficients of the IRN conclusions about the coupling direction (client or caregiver drives the interaction) can be drawn, however, deciding between bi-directional coupling or no coupling remains a challenge. Constructing the full IRN, based on the multivariate time series of five coupled processes, reveals the existence of potential feedback loops. Further study is needed to be able to determine dynamics of coupling between the different layers.

Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study.

Voluntary stopping of eating and drinking (VSED) is a controversial method to hasten death. Little is known about why and how people come to VSED. This study assessed patients' motives, how patients decide on VSED, and the ways in which they prepare for VSED and involve others. We conducted a qualitative study in the Netherlands of 29 patients; 24 started VSED and 19 died. Thirteen patients were included before or during VSED and 16 afterward. We interviewed 17 patients, 18 relatives, and 10 professional caregivers. Inductive ideal-type analysis was used to describe typologies. Three patient groups emerged. The first group (12 patients) were older people who felt life was completed, for whom control was important. They prepared well for VSED, but could overlook the need for help and the emotional burden their decision could place on relatives. The second group (11 patients) were older care-dependent patients with a poor quality of life. They sometimes started VSED suddenly, and they relied heavily on (informal) caregivers to prepare and execute their plan. The third group (6 patients) were psychiatric patients with a long-standing but fluctuating death wish, most of whom were younger. They often prepared for VSED in secrecy or started VSED unprepared. Patients embarking on a trajectory toward VSED are a very diverse group, with different care needs. Guidance for care during VSED needs to be applicable to all 3 groups.