Decision-making in older people with dementia

2013 ◽  
Vol 23 (4) ◽  
pp. 307-316 ◽  
Author(s):  
M. Aurora Viloria Jiménez ◽  
Mónica Chung Jaén ◽  
Marta Vigara García ◽  
Helena Barahona‐Alvarez
Keyword(s):  
Decision Making ◽  
End Of Life Care ◽  
Laboratory Tests ◽  
Social Care ◽  
Life Care ◽  
Economic Costs ◽  
People With Dementia ◽  
Testamentary Capacity ◽  
Key Points ◽  
Health And Social Care

SummaryDementia is a syndrome characterized by a progressive impairment in cognition, function and behaviour, with a considerable burden in terms of health and social care, and economic costs. As Alzheimer's disease and other dementias advance, the patient's capacity, competence and possibility of participation in decision-making decrease. Key points in managing people with dementia include screening of cognitive impairment, neuropsychological assessment, laboratory tests and neuroimaging, genetic tests, informed consent, inclusion in clinical trials and discussion of advance directives, driving, managing finances and testamentary capacity, pharmolocogical and non-pharmacological treatment and also palliative and end-of-life care. In this article we review these crucial points in decision-making for people with dementia and their families and caregivers.

Effectiveness of Educational Programs on Palliative and End-of-life Care in Promoting Perceived Competence Among Health and Social Care Professionals

2021 ◽  
pp. 104990912110385
Author(s):  
Kelly Tsz Ching Wong ◽  
Amy Yin Man Chow ◽  
Iris Kwan Ning Chan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Workers ◽  
End Of Life Care ◽  
Social Care ◽  
Self Care ◽  
Perceived Competence ◽  
Educational Programs ◽  
Life Care ◽  
Health And Social Care

Background: There is a growing need for palliative care for patients near the end of life and their caregivers. Palliative and end-of-life care (EoLC) education are recommended for all health care (e.g., physicians, nurses, and allied health practitioners) and social care professionals (e.g., social workers) to ensure the quality of services. However, less attention has been afforded to generic, in contrast to specialized, EoLC education. This study evaluated the effectiveness of a series of short-term generic EoLC educational programs for health and social care professionals. Method: A pre-post survey design was adopted, focusing on different EoLC core competences. Results: Significant improvement was observed in all perceived competences after the educational programs, regardless of participants’ occupation or EoLC experience. Perceived competence in self-care was rated significantly higher than all other competences prior to the programs. Healthcare professionals rated significantly higher on competence in symptom management than social workers. Scores on communication skill and self-care competences were significantly higher following longer (i.e., 16-24 hours) than shorter (i.e., 4-8 hours) programs. Conclusion: Generalist palliative/EoLC educational programs may enable health and social care professionals to refresh and extend their knowledge and skills and enhance their perceived competence in providing EoLC. Further research on generalist palliative/EoLC education is needed to examine the impact of continuing training on professionals’ actual practice in EoLC and palliative care.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

Development and psychometric validation of a comprehensive end-of-life care competence scale: A study based on three-year surveys of health and social care professionals in Hong Kong

2020 ◽  
pp. 1-10
Author(s):  
Daiming Xiu ◽  
Amy Y.M. Chow ◽  
Iris K.N. Chan
Keyword(s):  
Hong Kong ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Social Care ◽  
Life Care ◽  
Internal Reliability ◽  
Health And Social Care ◽  
Competence Scale ◽  
Bereavement Care

Abstract Objective This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates. Method Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong. Results Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: χ2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals. Significance of results The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.

scholarly journals How does English national end-of-life care policy impact on the experience of older people at the end of life? Findings from a realist evaluation

2021 ◽  
Vol 22 ◽  
Author(s):  
Rhiannon Barker ◽  
Patricia Wilson ◽  
Claire Butler
Keyword(s):  
Older People ◽  
End Of Life ◽  
System Integration ◽  
End Of Life Care ◽  
Social Care ◽  
Death And Dying ◽  
Realist Evaluation ◽  
Second Phase ◽  
Life Care ◽  
Health And Social Care

Abstract Aim: To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality. Background: Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes. Method: This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis. Findings: This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced. Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic.

Effects of Visual Aids for End-of-Life Care on Decisional Capacity of People With Dementia

2020 ◽  
Vol 29 (1) ◽  
pp. 185-200 ◽  
Author(s):  
Wan-Zu D. Chang ◽  
Michelle S. Bourgeois
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
External Support ◽  
Life Care ◽  
Visual Aids ◽  
Decisional Capacity ◽  
People With Dementia ◽  
Decision Making Capacity ◽  
Moderate Dementia

Purpose This study evaluated the decision-making capacity of persons with mild and moderate dementia on end-of-life care when using visual aids. A secondary purpose was to learn whether the judges naive to the experimental conditions would rate participants' decisional abilities as better when augmented by visual aids, thereby validating the behavioral changes due to the use of these external support. Method Twenty older adults with mild and moderate dementia demonstrated Understanding, Expressing a Choice, Reasoning, and Appreciation of 2 medical vignettes under 2 counterbalanced conditions: verbal alone or verbal with visual aids. Transcripts were analyzed and scored to measure decisional skills. Twelve judges rated participants' decisional abilities using a 7-point Likert scale. Results Participants demonstrated significantly better overall decisional capacity in Understanding, Reasoning, and Appreciation when supported by visual aids during the decision-making process. No significant differences between conditions were found in Expressing a Choice, the decisional skill Logical Sequence under Reasoning, and Acknowledgment under Appreciation. Overall, the judges' ratings validated these outcomes; the judges' ratings reflected greater agreement in the visual condition than in the verbal condition. Conclusions Findings indicated that visual aids (a) improved the decision-making capacity of individuals with dementia in comprehending medical information, employing supportive reasons, and relating this information to his or her own situation and (b) contain the potential for judges who majored or are majoring in speech-language pathology to reach a stronger consensus when determining the decision-making capacity of individuals with dementia.

The development of safer walking technology: a review

2015 ◽  
Vol 9 (2) ◽  
pp. 100-115 ◽  
Author(s):  
Esmé Wood ◽  
Gillian Ward ◽  
John Woolham
Keyword(s):  
Decision Making ◽  
Social Care ◽  
Evidence Base ◽  
Current Evidence ◽  
Content Type ◽  
People With Dementia ◽  
Published Evidence ◽  
Health And Social Care ◽  
Current Evidence Base ◽  
The Right

Purpose – The purpose of this paper is to gain a greater understanding of the development of safer walking technology for people with dementia through contemporary literature. Design/methodology/approach – A two stage systematic approach to searching the literature was adopted. Initially this involved searching the literature to gain a broad overview of the development of safer walking technology and the context in which it has been developed. Then, this literature was examined in detail to look at published evidence surrounding the use of safer walking technology by people with dementia. These articles were quality appraised and a meta ethnographic approach taken to synthesis of the findings. Findings – There is a small but growing body of literature within this field. Whilst there is only limited evidence to support the use of safer walking technologies for people with dementia, the evidence to date indicates great potential for its use. If provided with the right support and guidance, safer walking technology has the potential to increase freedoms and independence for people with dementia; gaining them improved access to outdoor spaces and environments to support their health and wellbeing. However, if the safer walking technology continues to be associated with only risk management it will not achieve this potential. Research limitations/implications – The published literature within this field is small and has limited generalisability as much of it was generated in recent years has been by the same small research teams, often reusing data sets. There is also very little research that examines the experience of actually using safer walking technology and even less which explores the views of people with dementia. It is evident that a greater breadth and depth of knowledge is needed within this field to develop a clearer understanding of how this technology is used and perceived by all stakeholders concerned. In particular the literature would benefit from greater consideration of the views and experiences of people with dementia themselves. Practical implications – For many people with dementia, health and social care professionals can play an important role in ensuring appropriate assessment and support in the decision-making process when using safer walking technology. However, greater support is needed in decision making for all people with dementia, especially those people not currently engaged with specialist services. Therefore greater awareness of the benefits and limitations of this technology is needed by all health and social care professionals as well as the general public. Originality/value – At the time of conducting this review the author is unaware of any other systematic search of literature or overview of research on the use of safer walking technology and its use by people with dementia. Despite this safer walking technology is growing in popularity, commonly recommended by health and social care practitioners and often marketed and purchased directly by people with dementia and their families. This review offers an insight into the development of the technology and the current evidence base for its use.

Sign in / Sign up

Export Citation Format

Share Document