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Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research. [ABSTRACT FROM AUTHOR]

Background: People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life. Aim: To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs. Design: Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation. Setting/participants: The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia. Results: Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: "food intake," "physical well-being," and "physical activity and recovery." Categories of psychosocial needs were classified as follows: "adaptation of stimuli," "communication," "personal attention," "participation," "familiarity and safety," as well as "self-determination." Spiritual needs addressed "religion." The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood. Conclusion: People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice. [ABSTRACT FROM AUTHOR]

Background: Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life. Objective: This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives. Methods: A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories. Results: A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail. Conclusion: This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision. [ABSTRACT FROM AUTHOR]

Background: Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes ("open notes"). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA., Objective: The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions., Methods: ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA., Results: Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics., Conclusions: The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA., Trial Registration: German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188., (©Julian Schwarz, Eva Meier-Diedrich, Katharina Neumann, Martin Heinze, Yvonne Eisenmann, Samuel Thoma. Originally published in JMIR Mental Health (https://mental.jmir.org), 05.02.2024.)

Background: Episodic breathlessness is often accompanied by panic. A vicious cycle of breathlessness-panic-breathlessness leads to emergencies with severe breathlessness and/or fear of dying. However, the interaction between episodic breathlessness and panic is poorly understood. Thus, the aim is a better understanding of the interaction between panic and episodic breathlessness to develop appropriate support for patients suffering from this symptom., Methods: Patients suffering from episodic breathlessness due to life-limiting diseases answered questions on the characteristics of episodic breathlessness and panic-spectrum psychopathology, including underlying mechanisms. Using the Patient Health Questionnaire and the Structured Clinical Interview for DSM-IV Diagnoses (SCID), patients were screened for panic disorder. An open-ended question captured the patients' descriptions of panic during breathlessness episodes., Results: Forty-six patients [52% women, mean age =66 years; standard deviation (SD) 7.3 years] provided information: 61% suffered from panic during the entire breathlessness episode, 39% experienced panic in every episode, and 25% were diagnosed with panic disorder. Exploratory data analysis was conducted. Patients with high scores in breathlessness catastrophizing thoughts experienced more panic in a breathlessness episode (P<0.001) and considered themselves more panic than low-scorers (P=0.024). There was a significant indirect effect of episodic breathlessness intensity on the panic experienced in an episode, and this effect was mediated by catastrophizing thoughts regarding breathlessness (b=0.164; 95% CI: 0.105, 0.222). Patients described in the open-ended question experiencing only panic or breathlessness, or a combination of both. Some patients managed to differentiate panic from episodic breathlessness, and used strategies to avoid panic in an episode., Conclusions: Research on treatment options for episodic breathlessness should not only focus on panic in breathlessness episodes, but also on underlying mechanisms such as catastrophizing thoughts, as they aggravate the burden.

Patient accessible Electronic Health Records (PAEHRs) are increasingly implemented internationally. However, studies carried out in the mental health care setting report several practical and ethical challenges when introducing PAEHRs. In this paper we aim to explore the requirements of a PAEHR system in mental health. As part of a participatory design process, we collected qualitative data from service users and staff in a rural mental health day clinic setting, which can be summarized in the following themes: I) Function and way of the documentation; II) Impact on Treatment; III) Concerns about PAEHRs; IV) time of access to PAEHRs; V) Different views on what to share; VI) Access, Data Privacy and Special Features. Our study uncovered the complexity and special requirements and barriers to the design of PAEHR in mental health. While we are in an early stage of our study, we will continue this iterative process and adapt the PAEHR system to the specific needs of the users and domains.