scholarly journals Implementing the PIE (Person, Interaction and Environment) programme to improve person-centred care for people with dementia admitted to hospital wards: a qualitative evaluation

2021 ◽  
Vol 11 (1) ◽  
pp. 1-15
Author(s):  
Ann Skingley ◽  
◽  
Mary Godfrey ◽  
Rosemary Henderson ◽  
Kim Manley ◽  
...  
Keyword(s):  
Qualitative Evaluation ◽  
Readiness For Change ◽  
Practice Change ◽  
Normalisation Process Theory ◽  
Clinical Leadership ◽  
People With Dementia ◽  
Study Sites ◽  
The Uk ◽  
Hospital Wards ◽  
Environment Programme

Background: In the UK, improving person-centred care for people with dementia in hospitals is a policy priority. The PIE (Person, Interaction, Environment) programme comprises cycles of observation of care by staff, identification of areas for improvement and plans for practice change and evaluation. Aim: To describe and evaluate PIE implementation in three UK NHS regions. Methods: A qualitative design was adopted at 10 case study sites (wards), selected on the basis of readiness for change criteria. Following a training workshop, PIE cycles were introduced into each ward. Data collection comprised observation, interviews, documentary analysis and an events log. Normalisation process theory provided a guiding framework for analysis. Results: PIE was fully adopted in two study wards over 18 months, which resulted in sustained practice change and increased awareness of person-centredness. Partial implementation of PIE took place in a further two wards but progress stalled before significant action. The remaining six wards did not implement the programme. Factors influencing the likelihood of implementation were: relevance of PIE; collective team involvement; fit with strategic priorities; adequate resourcing; effective clinical leadership; good facilitation; and organisational stability. Conclusion: PIE has the potential to help staff improve person-centred care for people with dementia admitted to hospital wards. However, the evidence provided by this article is limited to 10 wards, of which only two fully implemented the programme. Implications for practice: A programme for improving person-centred care for people with dementia in acute hospital wards requires sustained commitment from the ward and the wider organisation Successful practice change depends on multiple factors, including effective clinical leadership and good facilitation Contextual factors at various levels of an organisation need to be considered Use of the PIE tool has the potential to enable staff to focus on person-centred care for older people with dementia in acute settings

A study protocol: co-designing a mobile application to enhance communication, safety and wellbeing for people living at home with early stage dementia (Preprint)

2020 ◽  
Author(s):  
Karen Davies ◽  
Bie Nio Ong ◽  
Sudeh Cheraghi-Sohi ◽  
Katherine Perryman ◽  
Caroline Sanders
Keyword(s):  
Mobile Application ◽  
Design Research ◽  
Early Stage ◽  
Design Method ◽  
Mobile Apps ◽  
Care Service ◽  
Normalisation Process Theory ◽  
Policy And Practice ◽  
People With Dementia ◽  
At Home

BACKGROUND Background: There is a growing interest in using mobile applications in supporting health and wellbeing. Evidence directly from people with dementia regarding the acceptability, usability and usefulness of mobile apps is limited. It builds on ‘My Health Guide’ which was co-designed with people with cognitive disabilities. . OBJECTIVE Objective This paper describes the protocol of a study evaluating an app designed for supporting wellbeing with people living with dementia, specifically focusing on enhanced safety through improved communication METHODS Method: The study will employ design research, using participatory qualitative research methods over three cycles of evaluation with service users, their families and practitioners. The study will be developed in partnership with a specialist home care service in England. A purposive case selection will be used to ensure that the cases exemplify differences in experiences. The app will be evaluated in a ‘walkthrough’ workshop by people living with early stage dementia and then trialled at home by up to 12 families in a ‘try-out’ cycle. An amended version will be evaluated in a final ‘walkthrough’ workshop in cycle 3. Data will be collected from at least four data sources during the try-out phase and analysed thematically (people with dementia, carers, practitioners and app usage). An explanatory, multiple-case study design will be used to synthesise and present the evidence from the three cycles drawing on Normalisation Process Theory to support interpretation of the findings. RESULTS Results: The study is ready to be implemented but has been paused to protect vulnerable individuals during the Coronavirus in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic, as well as providing insight into the challenges of social isolation arising from living with dementia CONCLUSIONS Discussion: Evaluating a mobile application for enhancing communication, safety and wellbeing for people living with dementia contributes to key ambitions enshrined in policy and practice, championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study uses a co-design method to enable the voice of users with dementia to highlight the benefits and challenges of technology and shape future development of apps that potentially enhances safety through improved communication.

scholarly journals 411 - Implementing the STrAtegies for RelaTives (START) intervention in Portugal – preliminary findings

2020 ◽  
Vol 32 (S1) ◽  
pp. 127-127
Author(s):  
Fatima Urzal ◽  
Ana Quintão ◽  
Catarina Santos ◽  
Nuno Moura ◽  
Ana Banazol ◽  
...  
Keyword(s):  
Pilot Study ◽  
Coping Strategies ◽  
Family Caregivers ◽  
Clinical Training ◽  
Unmet Needs ◽  
Depression Scale ◽  
Subjective Impression ◽  
Implementation Challenges ◽  
People With Dementia ◽  
The Uk

IntroductionAs in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.ObjectivesWe describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.MethodWe translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.ResultsDuring a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.Discussion/ConclusionsThis pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.

scholarly journals Places Visited, Maintained, or Abandoned Outside Home: A Community Mobility Need of Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 673-673
Author(s):  
Isabel Margot-Cattin ◽  
Sophie Gaber ◽  
Nicolas Kuhne ◽  
Camilla Malinowski ◽  
Louise Nygard
Keyword(s):  
Older Adults ◽  
Cognitive Decline ◽  
Health Condition ◽  
Driving Cessation ◽  
Age In Place ◽  
Community Mobility ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Abstract For older adults to “age in place”, they need to keep engaged and mobile in their communities, whatever their health condition. The impact of age and cognitive decline on community mobility is a growing problem in Europe and worldwide. Engaging in occupations outside home implies being able to get to those places where activities are performed. Yet little is known regarding the types of places visited, maintained or abandoned for older adults with/without dementia. This study addresses community mobility needs through the places people visit, maintain or abandon. People with and without dementia, aged 55+, were interviewed using the Participation in ACTivities and Places OUTside the Home (ACT-OUT) questionnaire across Switzerland (n=70), Sweden (n=69) and the UK (n=128). Results show that people with dementia experience a higher rate of abandonment for more places than regular older adults. Insights about driving cessation and access to travel passes will be presented.

scholarly journals Older Carers and Carers of People with Dementia: Improving and Developing Effective Support

2020 ◽  
pp. 1-15
Author(s):  
Mary Larkin ◽  
Melanie Henwood ◽  
Alisoun Milne
Keyword(s):  
Third Sector ◽  
Evidence Base ◽  
Service Evaluation ◽  
People With Dementia ◽  
Carer Support ◽  
Tailored Approach ◽  
The Uk ◽  
Similar Stage

The policy drive to support carers is a longstanding national and international priority. Research about the design and delivery of support for carers is critical to the underpinning evidence base. Through a timely exploration of a third sector perspective, the UK-based study discussed in this article provides insights into approaches to, and the commissioning of, support for older carers and carers of people with dementia. The study highlights the importance of: embedding carers’ perspectives in service developments; the provision of both generic and targeted support which adopts a nuanced and tailored approach; titrating the delivery of information and advice at a pace to match carers’ needs; capturing quantitative and qualitative dimensions in service evaluation; and increased quantity and longevity of funding. Such insights not only complement existing research but are also generalisable to other countries at a similar stage in the development of carer support.

scholarly journals Research on the health of and interventions for family caregivers of people with dementia: a bibliometric analysis of research output during 1988–2018

2019 ◽  
Author(s):  
Hui Shi ◽  
Chen Mao ◽  
Jinling Tang ◽  
Huiying Liang
Keyword(s):  
Bibliometric Analysis ◽  
Research Output ◽  
Online Communication ◽  
Annual Number ◽  
Dementia Patient ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
The Usa ◽  
Performance Statistics ◽  
The Uk

Abstract Background: Dementia is a large and growing health problem, and since the majority of dementia patients live at home, caring responsibilities generally fall to family members. Caregivers are often inadequately supported by formal health services and have poorer psychological and physical health. Our study aimed to compare the contributions of publications from different countries, institutions and authors and present a bibliometric analysis to determine the future hotspots and trends in research on the health of and interventions for family dementia caregivers. Methods: Studies published during 1988-2018 were extracted from the Science Citation Index Expanded of the Web of Science. Each publication was evaluated to obtain the basic information. Bibliometric analysis was used to evaluate the number or cooperation networks of publications, countries, institutions, journals, citations, authors, references, and keywords. The resulting articles were analyzed descriptively, and data were produced for VOSviewer. Results: Five hundred forty-two articles were identified.The annual number of relevant publications has increased steadily since approximately 2006. The USA has the highest number of publications (36.2%), followed by the UK (12.9%). China entered late, but research there has developed rapidly. The most productive institution, journal, and author in this field are University College London, the Journal of the American Geriatrics Society, and Orrell M from the UK, respectively. A co-occurrence analysis of keywords reveals a mainstream research focus on burden, depression, quality of life, and corresponding interventions for dementia patient caregivers. The keywords “psychosocial intervention”, “long-term”, “e-learning/online”, “communication”, and “qualitative research” reflect the latest hotspots, appearing in approximately 2017-2018. Conclusion: Our study details the performance statistics of and the main topics and trends in the research on the health of and interventions for dementia caregivers from 1988 to 2018 and provides a comprehensive analysis.

scholarly journals Physical health monitoring in dementia and associations with ethnicity: a descriptive study using electronic health records

BJGP Open ◽  
2020 ◽  
Vol 4 (4) ◽  
pp. bjgpopen20X101080
Author(s):  
Cini Bhanu ◽  
Mary Elizabeth Jones ◽  
Kate Walters ◽  
Irene Petersen ◽  
Jill Manthorpe ◽  
...  
Keyword(s):  
Primary Care ◽  
Physical Health ◽  
Influenza Vaccination ◽  
Ethnic Groups ◽  
Health Monitoring ◽  
Black People ◽  
Good Care ◽  
People With Dementia ◽  
The Uk ◽  
Comorbidity Status

BackgroundGood physical health monitoring can increase quality of life for people with dementia, but the monitoring may vary and ethnic inequalities may exist.AimTo investigate UK primary care routine physical health monitoring for people with dementia by: (a) ethnic groups, and (b) comorbidity status.Design & settingA retrospective cohort study was undertaken using electronic primary care records in the UK.MethodPhysical health monitoring was compared in people with dementia from white, black, and Asian ethnic groups and compared those with ≥1 comorbidity versus no comorbidity, from 1 April 2015 to 31 March 2016. Using the Dementia:Good Care Planning framework and expert consensus, good care was defined as receiving, within 1 year: a dementia review; a blood pressure (BP) check (at least one); a GP consultation (at least one); a weight and/or body mass index (BMI) recording (at least one); and an influenza vaccination.ResultsOf 20 821 people with dementia, 68% received a dementia review, 80% at least one BP recording, 97% at least one GP contact, 48% a weight and/or BMI recording, and 81% an influenza vaccination in 1 year. Compared with white people, black people were 23% less likely and Asian people 16% less likely to have weight recorded (adjusted incidence rate ratio [IRR] = 0.77, 95% confidence interval [CI] = 0.60 to 0.98/0.84, 0.71 to 1.00). People without comorbidities were less likely to have weight recorded (adjusted IRR = 0.74, 95% CI = 0.69 to 0.79) and BP monitored (adjusted IRR = 0.71, 95% CI = 0.68 to 0.75).ConclusionEthnic group was not associated with differences in physical health monitoring, other than weight monitoring. Comorbidity status was associated with weight and BP monitoring. Physical health monitoring in dementia, in particular nutrition, requires improvement.

Non-pharmacological interventions in care homes, with particular emphasis on the treatment of people with dementia

2020 ◽  
pp. 265-280
Author(s):  
Ian A. James ◽  
Alan Howarth
Keyword(s):  
Psychosocial Interventions ◽  
Care Homes ◽  
Future Research ◽  
Pharmacological Interventions ◽  
Cognitive Health ◽  
Care Plans ◽  
People With Dementia ◽  
The Individual ◽  
The Uk ◽  
Preventative Interventions

In the UK there are over 22,000 care homes, largely run by the private and charitable sectors, caring for 416,000 people. The residents in care homes present with a range of needs linked to physical health, cognitive health, and mental health. A large proportion of residents in care homes have dementia and many of them exhibit Behaviours that Challenge (BtC). This chapter focuses on the non-pharmacological interventions available in care homes to help treat BtC that occur in the context of dementia. It discusses preventative interventions designed to promote the wellbeing of people with dementia, and reviews the evidence. Formulation-led interventions identify the needs of the individual and lead to the development of person-centred care plans and the evidence strongly supports that these are needed to deliver effective psychosocial interventions in care homes. Finally, the chapter discusses the implications for future research.

A qualitative evaluation of a pilot leadership programme for dentists

2015 ◽  
Vol 28 (3) ◽  
pp. 185-199 ◽  
Author(s):  
Jonathan Walsh ◽  
Nicholas Taylor ◽  
Donna Hough ◽  
Paul Brocklehurst
Keyword(s):  
Local Level ◽  
Qualitative Evaluation ◽  
Training Programme ◽  
Structured Interviews ◽  
Clinical Leadership ◽  
Content Type ◽  
North West ◽  
Dental Practitioners ◽  
Training Programmes ◽  
The Way

Purpose – The purpose of this paper was to evaluate a pilot training programme run by Health Education North West to promote clinical leadership amongst general dental practitioners (GDPs). New powers and responsibilities for clinicians have caused a fundamental shift in the way that local services are planned and delivered in England. GDPs are being appointed onto the boards of local professional networks (LPNs) to influence the way that services are delivered at a local level. Analogous to clinical commissioning groups in medicine, the role of LPNs is to ensure that GDPs lead change and drive up the quality of service provision. Clinical leadership has been argued to be fundamentally important in these new structures, but has received little attention in the dental literature. Design/methodology/approach – Semi-structured interviews and a focus group were held with participants of the pilot to explore their understanding and experience of clinical leadership. These were recorded, transcribed verbatim and underwent thematic analysis. Findings – Nineteen codes were identified and organized into four themes: nature of clinical leadership, challenges for clinical leaders in dentistry, Leadership Exploration and Discovery programme evaluation and future direction. Practical implications – The research provides an understanding of how GDPs conceptualise clinical leadership and provides recommendations for future leadership training programmes. Originality/value – This is the first evaluation of a leadership programme for GDPs and so helps address the paucity of evidence in the dental literature.

scholarly journals Understanding the needs and experiences of people with young onset dementia: a qualitative study

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e021166 ◽  
Author(s):  
Luisa I Rabanal ◽  
John Chatwin ◽  
Andy Walker ◽  
Maria O’Sullivan ◽  
Tracey Williamson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Help Seeking ◽  
Late Onset ◽  
Psychological Impact ◽  
Young Onset ◽  
People With Dementia ◽  
Health And Social Care ◽  
Young Onset Dementia ◽  
The Uk ◽  
The Impact

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

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