scholarly journals The perceived and observed needs of patients with dementia admitted to acute medical wards

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1997-2017 ◽  
Author(s):  
Anthony Scerri ◽  
Charles Scerri ◽  
Anthea Innes
Keyword(s):  
Unmet Needs ◽  
Social Contact ◽  
Hospital Staff ◽  
Routine Care ◽  
Structured Interviews ◽  
Care Needs ◽  
People With Dementia ◽  
Acute Hospitals ◽  
Medical Wards ◽  
Constant Observation

It is acknowledged that the needs of persons living with dementia admitted in acute hospitals are not always met. Previous studies have focused on the perceived needs of professional caregivers or family members whilst the voices of patients with dementia in acute hospitals have not been extensively reported. This may have contributed to the under-recognition of the needs of persons living with dementia. The aim of this study was to categorise the perceived and observed needs of persons with dementia admitted in acute medical wards and to explore whether these needs are being or have been met. Thirteen people with dementia in three medical wards, who could verbally communicate with the researcher, were purposively selected as research participants. Semi-structured interviews were conducted to elicit each participant’s experiences of their hospital stay and whether their needs were perceived to have been/are being met. Moreover, routine care with the same participants was observed using Dementia Care Mapping. Maslow’s Hierarchy of Needs was used as a framework to categorise care needs. Our findings demonstrate that basic needs such as toileting, feeding, drinking, continence and comfort were not always met. Moreover, the largest gap between met and unmet needs was found in patients who were either under constant observation or unable to communicate. Too much emphasis was perceived and observed to be given on what staff considered as safety needs at the expense of other needs. The patients’ need for social contact and self-esteem such as dignity and respect were often ignored and this led to patients feeling devalued. Hospital staff have to be more aware of the holistic needs of patients with dementia in acute settings and the way care is delivered in order to make up for these unmet needs, thus facilitating person-centred care.

scholarly journals Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study

2014 ◽  
Vol 205 (3) ◽  
pp. 189-196 ◽  
Author(s):  
Elizabeth L. Sampson ◽  
Nicola White ◽  
Baptiste Leurent ◽  
Sharon Scott ◽  
Kathryn Lord ◽  
...  
Keyword(s):  
Cohort Study ◽  
Older People ◽  
Psychiatric Symptoms ◽  
Hospital Staff ◽  
Care Quality ◽  
Acute Hospital ◽  
Medical Illness ◽  
People With Dementia ◽  
Hospital Patients ◽  
Acute Hospitals

BackgroundDementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff.AimsTo define the prevalence of BPSD and explore their clinical associations.MethodLongitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD at admission and every 4 (±1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality.ResultsParticipants were very impaired; 46% at Functional Assessment Staging Scale (FAST) stage 6d or above (doubly incontinent), 75% had BPSD, and 43% had some BPSD that were moderately/severely troubling to staff. Most common were aggression (57%), activity disturbance (44%), sleep disturbance (42%) and anxiety (35%).ConclusionsWe found that BPSD are very common in older people admitted to an acute hospital. Patients and staff would benefit from more specialist psychiatric support.

The development and feasibility testing of the Distress Recognition Tool

2019 ◽  
Vol 21 (1) ◽  
pp. 39-52
Author(s):  
George J.E. Crowther ◽  
Cathy A. Brennan ◽  
Katherine L.A. Hall ◽  
Abigail J. Flinders ◽  
Michael I. Bennett
Keyword(s):  
Screening Tool ◽  
Psychological Symptoms ◽  
Routine Care ◽  
Structured Interviews ◽  
Content Type ◽  
People With Dementia ◽  
Frequency Of Use ◽  
Study Test ◽  
Feasibility Testing ◽  
Hospital Wards

Purpose People with dementia in hospital are susceptible to delirium, pain and psychological symptoms. These diagnoses are associated with worse patient outcomes, yet are often underdiagnosed and undertreated. Distress is common in people experiencing delirium, pain and psychological symptoms. Screening for distress may therefore be a sensitive way of recognising unmet needs. The purpose of this paper is to describe the development and feasibility testing of the Distress Recognition Tool (DRT). The DRT is a single question screening tool that is incorporated into existing hospital systems. It encourages healthcare professionals to regularly look for distress and signposts them to relevant resources when distress is identified. Design/methodology/approach The authors tested the feasibility of using the DRT in people with dementia admitted on two general hospital wards. Mixed methods were used to assess uptake and potential mechanisms of impact, including frequency of use, observation of ward processes and semi-structured interviews with primary stakeholders. Findings Over a 52-day period, the DRT was used during routine care of 32 participants; a total of 346 bed days. The DRT was completed 312 times; an average of 0.9 times per participant per day. Where participants had an identified carer, 83 per cent contributed to the assessment at least once during the admission. Thematic analysis of stakeholder interviews, and observational data suggested that the DRT was quick and simple to complete, improved ward awareness of distress and had the potential to improve care for people with dementia admitted to hospital. Originality/value This is the first short screening tool for routinely detecting distress in dementia in any setting. Its uptake was positive, and if effective it could improve care and outcomes for people with dementia, however it was beyond the scope of the study test this.

scholarly journals Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study

2020 ◽  
Author(s):  
Laura Ashley ◽  
Rachael Kelley ◽  
Alys Griffiths ◽  
Fiona Cowdell ◽  
Ann Henry ◽  
...  
Keyword(s):  
Cancer Care ◽  
Treatment Decision ◽  
Hospital Staff ◽  
Ethnographic Study ◽  
Cancer Information ◽  
Structured Interviews ◽  
Global Challenge ◽  
Treatment Decision Making ◽  
People With Dementia ◽  
Care And Treatment

Abstract Background Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted. Results There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. Conclusions Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

scholarly journals Protocol for conducting scoping reviews to map implementation strategies in different care settings: focusing on evidence-based interventions for preselected phenomena in people with dementia

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e051611
Author(s):  
Christina Manietta ◽  
Tina Quasdorf ◽  
Mike Rommerskirch-Manietta ◽  
Jana Isabelle Braunwarth ◽  
Daniel Purwins ◽  
...  
Keyword(s):  
Complex Interventions ◽  
Implementation Strategies ◽  
Routine Care ◽  
Dementia Care ◽  
Evidence Based ◽  
Care Needs ◽  
Term Care ◽  
People With Dementia ◽  
Scoping Reviews ◽  
Analytical Approaches

IntroductionVarious evidence-based interventions are available to improve the care of people with dementia in different care settings, many of which are not or are only partially implemented in routine care. Different implementation strategies have been developed to support the implementation of interventions in routine care; however, the implementation of complex interventions remains challenging. The aim of our reviews is to identify promising strategies for, significant facilitators of and barriers to the implementation of evidence-based interventions for very common dementia care phenomena: (A) behaviour that challenges supporting a person with dementia in long-term care, (B) delirium in acute care and (C) the postacute care needs of people with dementia.Methods and analysisWe will conduct one scoping review for each preselected dementia care phenomenon (A, B and C). For this, three literature searches will be carried out in the following electronic databases: MEDLINE (via PubMed), CINAHL (via EBSCO) and PsycINFO (via EBSCO). Additionally, we will perform backward and forward citation tracking via reference lists and Google Scholar. Identified records will be independently screened by two reviewers (title/abstract and full text) using the defined inclusion criteria. We will include all study designs and publications in the German or English language. For the data analyses, we will conduct a deductive content analysis using two different analytical approaches: Expert Recommendations for Implementation Change and the Consolidated Framework for Implementation Research.Ethics and disseminationDue to the nature of a review, ethical clearing is not required. We will disseminate our results in peer-reviewed journals, workshops with stakeholders, and (inter)national conferences.

OS10.6.A Supportive care needs of TYA childhood brain tumour survivors and their caregivers: a mixed methods study

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii14-ii14
Author(s):  
E Nicklin ◽  
G Velikova ◽  
A Glaser ◽  
N Sarwar ◽  
M Kwok-Williams ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Qualitative Data ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Structured Interviews ◽  
Care Needs ◽  
Long Term Follow Up

Abstract BACKGROUND Childhood brain tumour survivors and their family caregivers can experience many late effects of treatment including social, cognitive and physical issues. Yet, the supportive care needs of survivors, now teenagers and young adults (TYAs), and their caregivers population are largely unknown. We aimed to gain an in-depth understanding of this populations’ supportive care needs. MATERIAL AND METHODS This study used a convergent mixed methods design including quantitative (survey) and qualitative data (in-depth semi-structured interviews). Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, at least five years from diagnosis, currently aged 13–30 and their primary caregivers. The results from quantitative and qualitative data were integrated using a Joint Display Table. RESULTS 136 eligible survivors and caregivers (78 survivors/58 caregivers) were approached to take part in the survey. In total, 112 participants (69 survivors/43 caregivers) completed the survey. A further 22 participants took part in face-to-face semi-structured interviews (11 survivors/11 caregivers). The integrated findings indicate that both survivors and caregivers have unmet needs many years after diagnosis. TYA survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Caregivers experienced even more unmet needs - including regarding their own psychological well-being and survivors’ financial issues. Survivors further from diagnosis, unemployed survivors and single caregivers were more likely to report unmet needs. Barriers preventing survivors and caregivers accessing supportive services were highlighted, including (but not exclusive to) families not being aware of support available, location of services, and accessibility to information/support. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required is critical to improving survivor and caregiver quality of long-term survival.

scholarly journals THE IMPACT OF DEMENTIA TRAINING ON HOSPITAL STAFF’S KNOWLEDGE AND ATTITUDES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S727-S727
Author(s):  
Julia Schneider ◽  
Birgit Teichmann ◽  
Andreas Kruse
Keyword(s):  
Mixed Methods Research ◽  
Small Sample Size ◽  
Hospital Staff ◽  
Small Sample ◽  
Structured Interviews ◽  
Medical Assistants ◽  
People With Dementia ◽  
Post Test ◽  
Baseline Test ◽  
The Impact

Abstract Older people with dementia are more frequently hospitalized and more strongly associated with negative outcomes. We examined the acceptance and the effect of a dementia training on attitudes and knowledge of the hospital staff. In the current study, we utilized a mixed-methods research design to examine a clinic group of six hospitals in Germany. Besides semi-structured interviews, we collected quantitative data with a questionnaire given before and three-months after the training. The questionnaire contained German translated versions of the Knowledge in Dementia (KIDE) Scale and the Dementia Attitudes Scale (DAS-D) to assess changes in attitudes. The participant population (N=60) consisted of nurses (n=35, 58%), medical assistants (n=13, 22%) and other medical professions. Satisfaction with the training was predominantly positive, 92% would recommend the training to their colleagues. At baseline, a small but significant correlation between the standardized questionnaires KIDE and DAS-D was evident (r(60)=.357, p=.005). The participants (n=32) showed a more positive attitude in the post-test (M=5.39, SD=0.64) than in the baseline-test (M=5.19, SD=0.66). This difference was significant (t(31)=-2.434, p=.021). However, we did not find any significant effects on the KIDE. The reason for this may be the use of a standardized questionnaire, which does not reflect the increase in knowledge, or there has been no increase in knowledge of dementia. The results are based on a small sample size. However, they have demonstrated that dementia training can positively influence attitudes toward people with dementia. A significant increase in knowledge was expected but could not be demonstrated.

scholarly journals Admiral Nursing—A Model of Specialist Dementia Care in Acute Hospitals

2020 ◽  
Vol 6 ◽  
pp. 237796082095267
Author(s):  
Zena Aldridge ◽  
Emily Oliver ◽  
Hannah Gardener ◽  
Karen Harrison Dening
Keyword(s):  
Hospital Care ◽  
Quality Care ◽  
Hospital Staff ◽  
Dementia Care ◽  
Acute Hospital ◽  
Acute Hospital Care ◽  
Complex Needs ◽  
People With Dementia ◽  
Health And Social Care ◽  
Acute Hospitals

Introduction The rising prevalence of dementia has led to increased numbers of people with dementia being admitted to acute hospitals. This demand is set to continue due to an increasingly older population who are likely to have higher levels of dependency, dementia, and comorbidity. If admitted to the hospital, people with dementia are at higher risk of poor outcomes during and following a hospital admission. Yet, there remains a significant lack of specialist support within acute hospitals to support people with dementia, their families and hospital staff. Methods Admiral Nurses are specialists that work with families affected by dementia and provide consultancy and support to health and social care colleagues to improve the delivery of evidenced based dementia care. Historically, Admiral Nurses have predominantly been based in community settings. In response to the increasing fragmentation of services across the dementia trajectory, the Admiral Nurse model is evolving and adapting to meet the complex needs of families impacted upon by dementia inclusive of acute hospital care. Results The Admiral Nurse acute hospital model provides specialist interventions which improve staff confidence and competence and enables positive change by improving skills and knowledge in the provision of person-centred dementia care. The role has the capacity to address some of the barriers to delivering person centred dementia care in the acute hospital and contribute to improvements across the hospital both as a result of direct interventions or influencing the practice of others. Conclusion Improving services for people with dementia and their families requires a whole system approach to enable care coordination and service integration, this must include acute hospital care. The increasing numbers of people with dementia in hospitals, and the detrimental effects of admission, make providing equitable, consistent, safe, quality care and support to people with dementia and their families a national priority requiring immediate investment. The inclusion of Admiral Nursing within acute hospital services supports service and quality improvement which positively impacts upon the experience and outcomes for families affected by dementia.

scholarly journals What influences uptake of psychosocial interventions by people living with early dementia? A qualitative study

Dementia ◽  
2021 ◽  
pp. 147130122110073
Author(s):  
Becky Field ◽  
Elizabeth Coates ◽  
Gail Mountain
Keyword(s):  
Social Contact ◽  
Psychosocial Interventions ◽  
Group Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Community Activities ◽  
People With Dementia ◽  
Practical Support ◽  
Early Dementia ◽  
Mental Stimulation

Background Health policy promotes post-diagnostic support for people affected by dementia. Evidence suggests psychosocial interventions can effectively support people living with dementia after diagnosis. Yet, what influences uptake of psychosocial interventions by people with early dementia is poorly understood. This research aimed to identify influences on uptake of psychosocial interventions by people with early dementia. Methods Sixteen face-to-face semi-structured interviews with people with early dementia, either alone or with a family member(s), were completed. Twelve staff participated in semi-structured interviews or a focus group. Thematic analysis and triangulation enabled identification of overall themes across different participant groups and interview types. Main Findings Four overarching themes influencing uptake were identified: (1) adjusting to a diagnosis, (2) appeal of activities and perception of benefit, (3) service and societal context, and (4) relationships and communication. Individual responses to diagnosis, experiences of dementia and dementia services influenced uptake. Group interventions were discussed the most by all participants. Group interventions offering social contact, peer support, information, enjoyable activities and mental stimulation were valued. However, group interventions specifically aimed at people with dementia did not appeal to all. Ability to travel and convenience of locations were important. Continuing with community activities not focused on dementia was valued. Stigma around dementia appeared to discourage uptake. Emotional and practical support from family was key to facilitating uptake as were the relationships between people with dementia and staff. Conclusion A complex interplay of individual, service and societal influences affect uptake of psychosocial interventions by people with early dementia. How interventions and which services can enable people with early dementia remain engaged in their everyday lives needs consideration. Further research examining uptake of specific interventions commonly offered to people living with early dementia is needed. Involving people with early dementia in designing interventions aiming to support them is paramount.

Perceived unmet needs of informal caregivers of people with dementia in Singapore

2013 ◽  
Vol 25 (10) ◽  
pp. 1605-1619 ◽  
Author(s):  
Janhavi Ajit Vaingankar ◽  
Mythily Subramaniam ◽  
Louisa Picco ◽  
Goi Khia Eng ◽  
Saleha Shafie ◽  
...  
Keyword(s):  
Financial Support ◽  
Unmet Needs ◽  
Informal Caregivers ◽  
Information Access ◽  
Structured Interviews ◽  
Group Discussions ◽  
Financial Barriers ◽  
Qualitative Research Design ◽  
People With Dementia ◽  
Physical Burden

ABSTRACTBackground:This study aimed to explore the experiences and challenges of informal caregivers in Singapore with the intent of identifying the multi-dimensional unmet needs from their perspective and generating caregivers’ needs checklist based on the findings.Methods:Informal caregivers were relatives of people with dementia and were responsible for organizing care and providing regular physical and/or financial support. Using a qualitative research design, informal caregivers’ experiences were explored. A total of ten focus group discussions and 12 semi-structured interviews were conducted with adult caregivers. Caregivers’ perceived unmet needs were identified using thematic analysis. Findings from the qualitative study were combined with inputs from professionals to create a checklist of caregivers’ needs for dementia.Results:The average age of the participants was 52.9 years; the majority of the participants were of Chinese ethnicity (50%), followed by Indian (23%), Malay (22%), and other (3%) ethnic groups. Informal caregivers perceived four categories of unmet needs: (i) emotional and social support, (ii) information, (iii) financial support, and (iv) accessible and appropriate facilities. Caregivers strongly expressed the need for emotional support to overcome the psychological and physical burden of care. Challenges with obtaining adequate information, access to services, and financial barriers were discussed. Based on these findings and expert panel discussions, a checklist of 26 items representing their unmet needs was designed.Conclusions:Informal caregivers face several challenges while caring for their relative with dementia and hence there is a clear demand to address their unmet needs for information, services, respite, and emotional and financial support.

scholarly journals 515 - Developing an observational instrument for people with somatic care needs to review Person-Centred Care in Nursing Homes

2021 ◽  
Vol 33 (S1) ◽  
pp. 65-65
Author(s):  
Claudia van der Velden ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Quality Of Life ◽  
Staff Development ◽  
Nursing Staff ◽  
Structured Interviews ◽  
Care Needs ◽  
Term Care ◽  
People With Dementia ◽  
Main Components ◽  
Positive Results

Healthcare professionals working with people with dementia (PwD) increasingly apply a person-centred care (PCC) model instead of task-oriented models of healthcare. Several studies have shown positive results of PCC on the quality of life of PwD. The PCC-model has not only shown positive results in the quality of life of PwD, but also for people with somatic needs.Dementia Care Mapping (DCM) is a dementia-specific observational tool that is used worldwide in long- term care facilities (LTCFs) for developing PCC-practice, but also to review staff development- and training needs. LTCFs providing care for people with somatic needs also have the need of a instrumentlike DCM, but nothing specific is available. In this project we develop, together with a Dutch nursing home and DCM-Netherlands, a method that suits this target group with the same aims as DCM.An iterative design has been applied. Based on a literature search and experience of the project group, a method has been developed. This method consists of three main components: (1)group observation with components of DCM, (2)structured interviews with residents and (3)feedback sessions with professionals and individual feedback for residents. To determine if the method meets the needs of practice, several expert groups (residents, informal caregivers and nursing staff) where asked about the content and feasibility using interviews/focus group. Furthermore in a pilot, the method will be tested by experienced DCM-mappers in practice, based on the outcomes of this pilot adjustments will be made.We are currently in the pilot phase and expecting to finalise the method with instruction manual coming summer. First feedback of the project- and expert groups are very positive. The nursing staff endorse the need of this instrument, and also feel it contributes to a better PCC-attitude. On the other hand, they emphasize that implementation can be challenging, because of time constraints in daily care.

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