scholarly journals Caregiver decision-making concerning involuntary treatment in dementia care at home

2021 ◽  
pp. 096973302110417
Author(s):  
Vincent RA Moermans ◽  
Angela MHJ Mengelers ◽  
Michel HC Bleijlevens ◽  
Hilde Verbeek ◽  
Bernadette Dierckx de Casterle ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Dementia Care ◽  
Stressful Situation ◽  
Involuntary Treatment ◽  
University Hospitals ◽  
Structured Interviews ◽  
Design Data ◽  
Care At Home ◽  
At Home

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations.

scholarly journals Involuntary treatment in dementia care at home: Results from the Netherlands and Belgium

2020 ◽  
Author(s):  
Angela M. H. J. Mengelers ◽  
Vincent R. A. Moermans ◽  
Michel H. C. Bleijlevens ◽  
Hilde Verbeek ◽  
Elizabeth Capezuti ◽  
...  
Keyword(s):  
The Netherlands ◽  
Dementia Care ◽  
Involuntary Treatment ◽  
Care At Home ◽  
At Home

Needs, issues, and expectations on dementia care at home across Europe to inform policy development: findings from a transnational research study

Health Policy ◽  
2021 ◽  
Author(s):  
Valentina Bressan ◽  
Henriette Hansen ◽  
Kim Koldby ◽  
Knud Damgaard Andersen ◽  
Allette Snijder ◽  
...  
Keyword(s):  
Policy Development ◽  
Research Study ◽  
Dementia Care ◽  
Care At Home ◽  
At Home

scholarly journals SHARED DECISION MAKING IN DEMENTIA CARE PLANNING: INVOLVING FAMILY CAREGIVERS

2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 667-667
Author(s):  
M. Vernooij-Dassen ◽  
E. Mariani ◽  
Y. Engels ◽  
R. Chattat
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Shared Decision Making ◽  
Dementia Care ◽  
Care Planning ◽  
Shared Decision

scholarly journals What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
M. G. Oosterveld-Vlug ◽  
B. Custers ◽  
J. Hofstede ◽  
G. A. Donker ◽  
P. M. Rijken ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Nursing Staff ◽  
Information Transfer ◽  
Essential Elements ◽  
Community Nursing ◽  
Structured Interviews ◽  
High Quality ◽  
Care At Home ◽  
At Home

Abstract Background In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. Methods Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. Results Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. Conclusions Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

scholarly journals INVOLUNTARY TREATMENT AMONG OLDER ADULTS WITH COGNITIVE IMPAIRMENT RECEIVING NURSING CARE AT HOME.

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 981-981
Author(s):  
V Moermans ◽  
M Bleijlevens ◽  
H Verbeek ◽  
F Tan ◽  
K Milisen ◽  
...  
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Nursing Care ◽  
Involuntary Treatment ◽  
Care At Home ◽  
At Home

The ethical evaluation of assistive technology for practitioners: a checklist arising from a participatory study with people with dementia, family and professionals

2012 ◽  
Vol 6 (2) ◽  
pp. 123-135 ◽  
Author(s):  
Beatrice Godwin
Keyword(s):  
Assistive Technology ◽  
Ethical Dilemmas ◽  
Study Data ◽  
Dementia Care ◽  
Structured Interviews ◽  
Content Type ◽  
Ethical Evaluation ◽  
People With Dementia ◽  
Monitoring And Surveillance ◽  
At Home

PurposeUncertainty over ethical impact may hinder uptake of assistive technology (AT) in dementia. This study aims to examine whether AT contributes to person‐centred care, whether users can participate in research and to explore ethical dilemmas with users, family and professional carers.Design/methodology/approachPeople with dementia, at home or in residential care, and carers were allocated equipment and consulted about ethics. In a small, qualitative study, data were collected using semi‐structured interviews and vignettes and content‐analysed to establish themes.FindingsAT in person‐centred dementia care requires meticulous assessment, reliability and availability in rapidly evolving situations. Users displayed insight, logic and empathy in ethical evaluation. They disliked remote monitoring and surveillance, whereas carers were pragmatic, prioritising safety.Research limitations/implicationsThis research provides further evidence that users with dementia can be included in research. It demonstrates a significant potential role for AT in dementia care, with an ethical checklist to help professionals evaluate ethical dilemmas.Originality/valueAT potentially increases wellbeing, enabling users to remain longer at home, delaying or avoiding moves to or between homes.

Decision-Making in Dementia Care: a Qualitative Study of Chinese Family Caregivers in Singapore

2020 ◽  
Vol 49 (4) ◽  
pp. 263-267
Author(s):  
Lay Ling Tan ◽  
Pui Sim Ong ◽  
Li Ling Ng ◽  
Wei Fern Ng ◽  
Hon Khuang Wong ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Dementia Care ◽  
Chinese Family

scholarly journals Caring and Conflict-Palliative Care in the Armed Forces: The Challenges for Caregivers

2021 ◽  
Vol 0 ◽  
pp. 1-14
Author(s):  
Savita Butola ◽  
Sushma Bhatnagar ◽  
Fiona Rawlinson
Keyword(s):  
Palliative Care ◽  
Rural Areas ◽  
Family Members ◽  
Community Support ◽  
Armed Forces ◽  
Structured Interviews ◽  
Transfer Policy ◽  
Remote Areas ◽  
Care At Home ◽  
At Home

Objectives: In India, Palliative care remains inaccessible, especially in remote areas. This study aimed at exploring the experience of caregivers related to arranging palliative care at home, for personnel and family members of an armed force. Materials and Methods: Qualitative study based on thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. Results: Lack of palliative care in rural areas makes arranging home care challenging for Indian caregivers, especially in armed forces. The families stay alone and personnel cannot be there to look after loved ones. Constraints of leave, financial and legal problems, frequent movement and social isolation disrupt care as well as family and community support systems, leading to psycho-social problems and stress for the serving personnel as well as families. Educating staff, integrating palliative care into existing medical services, coordinating with other agencies to increase awareness and provide care at home, access to opioids, timely leave, reimbursement of expenses, increased family accommodation, guidance about benefits, and considerate implementation of transfer policy can help mitigate some of their problems. Conclusion: These caregivers face physical exhaustion, psycho-social, financial, legal, and spiritual issues- some common to all rural Indians and others unique to the armed forces. Understanding their experiences will help the providers find solutions, especially in relation to the unique needs of the men in uniform.

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