New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff

Dementia ◽  
2016 ◽  
Vol 17 (4) ◽  
pp. 405-422 ◽  
Author(s):  
Esther Wiskerke ◽  
Jill Manthorpe
Keyword(s):  
Qualitative Interviews ◽  
Care Home ◽  
Care Homes ◽  
Sexual Intimacy ◽  
Term Care ◽  
Care Home Staff ◽  
General Terms ◽  
People With Dementia ◽  
The Moment ◽  
Person With Dementia

Background There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict. Methods This exploratory study investigated the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the themes that emerged in qualitative interviews with eight relatives of people with dementia and with 12 frontline care home staff working in two English care homes. Interviews took place in 2015 using a hypothetical vignette that unfolded in four stages. Thematic analysis was used to analyse the data. Findings The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff. Conclusion The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.

scholarly journals A qualitative comparison of care home staff and palliative care specialists’ experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study

2021 ◽  
pp. 026921632110433
Author(s):  
Melanie Handley ◽  
Deborah Parker ◽  
Frances Bunn ◽  
Claire Goodman
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
Term Care ◽  
Sustainable Solutions ◽  
Care Home Staff ◽  
People With Dementia

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists ( n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.

Intimacy between care home residents with dementia: Findings from a review of the literature

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 94-107 ◽  
Author(s):  
Esther Wiskerke ◽  
Jill Manthorpe
Keyword(s):  
Research Question ◽  
Care Home ◽  
Good Practice ◽  
Sexual Intimacy ◽  
Policy And Practice ◽  
Emotional Intimacy ◽  
Care Home Staff ◽  
Care Workers ◽  
Person With Dementia ◽  
Best Responses

Background There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict, and how good practice should be reflected in care home policy and practice guidance. Methods This literature review explored what is known of the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the findings of searches of three databases undertaken in August 2014 (Medline, Embase and PsychINFO). Findings Nine papers were found relevant to the research question. The following themes emerged from a synthesis of the papers located: sexuality in old age, dementia and sexuality, hyper-sexuality, views regarding sexuality of older people living in care homes, the law, ethics and consent, relationships and communication between care home and relatives, and new relationships or intimacy between residents with dementia. Conclusion While studies of residents’ expression of sexuality and their engaging in sexual behaviour with other resident(s) may be challenging to manage in care home settings and can be emotionally painful or uncomfortable for families, the review found that studies are few in number and span emotional intimacy and distressing behaviour.

scholarly journals Restraints and Restrictive Interventions during Essential Personal Care in Elderly People Living with Dementia in Care Homes

2021 ◽  
pp. 26-38
Author(s):  
Matthew Crooks ◽  
Katherine Wakenshaw ◽  
Julie Young ◽  
Kayleigh Purvis ◽  
Karin Smith ◽  
...  
Keyword(s):  
Care Home ◽  
Legal Framework ◽  
Care Staff ◽  
Care Homes ◽  
Personal Care ◽  
Personal Assistance ◽  
Care Home Staff ◽  
People With Dementia ◽  
Training Materials ◽  
Materials Used

Care home staff are frequently required to provide invasive personal care for their residents, and on occasions need to use restraint and restrictive practices with people with dementia. This often occurs in situations where the residents no longer have the insight that they require help and may misperceive the personal assistance as an assault. On a practical level, a significant number of people with dementia are currently being admitted to inpatient units due to their level of resistance around essential personal care. Often these same people are settled at all other times. This paper provides practical advice on how to support residents and their caregivers, and gives clinical, legal and ethical guidance. Previous work undertaken by the present authors have shown that care staff require supervision and coaching on this topic. The paper includes training materials used by the authors.  This includes a composite, fictitious case example that illustrates approaches that are compliant with UK guidelines.  It addresses the training of staff working in care homes. As such this paper provides a review and practical example of the appropriate use of restraint for residents unable to consent to the ‘intimate’ care they are receiving. It describes a method delivered in a person-centred manner and within a legal framework.  Having read this paper, care home staff should feel more confident, competent and secure in the assistance they are providing in this contentious area.

scholarly journals MEDREV: feasibility study of a combined pharmacy–health psychology intervention to improve care for people with dementia with behaviour that challenges in care homes

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703253
Author(s):  
Ian Maidment
Keyword(s):  
Feasibility Study ◽  
Qualitative Interviews ◽  
Care Home ◽  
Training Session ◽  
Dementia Care ◽  
Training Data ◽  
Care Staff ◽  
Care Homes ◽  
Inappropriate Use ◽  
People With Dementia

Background‘Behaviour that Challenges’ is common in older people with dementia in care homes and treated with antipsychotics. Policy is focused on reducing the use of antipsychotics in people with dementia and therefore reducing harm. This submission reports results on a NIHR-funded feasibility study MEDREV.AimTo assess the feasibility of medication review by a specialist dementia care pharmacist combined with staff training with the objective of limiting the inappropriate use of psychotropics.MethodCare homes were recruited. People meeting the inclusion (dementia; medication for behaviour that challenges), or their personal consultee, were approached. A specialist dementia care pharmacist reviewed medication and made recommendations. Care staff received a 3-hour training session promoting person-centred care and GPs’ brief training. Data were collected on recruitment and retention, and implementation of recommendations. Other outcomes included the Neuropsychiatric Inventory-Nursing Home version, quality of life (EQ-5D/DEMQoL), cognition (sMMSE), and health economic (CSRI). Qualitative interviews explored expectations and experiences.ResultsMedication reviews were conducted in 29 of 34 residents recruited and the pharmacist recommended reviewing medication in 21 of these. Fifteen (71.4%) of these were antidepressants: 57.1% (12 of 21) of recommendations were implemented and implementation took a mean of 98.4 days. Non-implementation themes for will be presented. One hundred and sixty-four care staff received training (care homes = 142; primary care = 22). Twenty-one participants (care home managers = 5; GPs = 3; nurses = 2; care staff = 11) were interviewed.ConclusionThe study was feasible, although the approach would need modification to improve the uptake of reviews and reduce the delay in implementation. Most of the recommendations related to antidepressants.

scholarly journals Six-month reviews for stroke survivors: a study of the modified Greater Manchester Stroke Assessment Tool with care home residents

2020 ◽  
Vol 34 (5) ◽  
pp. 677-687
Author(s):  
Emma Patchwood ◽  
Kate Woodward-Nutt ◽  
Katy Rothwell ◽  
Catherine Perry ◽  
Pippa Tyrrell ◽  
...  
Keyword(s):  
Observational Study ◽  
Unmet Needs ◽  
Assessment Tool ◽  
Qualitative Interviews ◽  
Care Home ◽  
Care Homes ◽  
Stroke Survivors ◽  
Care Home Staff ◽  
Organizational Barriers ◽  
Stroke Assessment

Objectives: To explore the feasibility of using a stroke-specific toolkit for six-month post-stroke reviews in care homes to identify unmet needs and actions. Design: An observational study including qualitative interviews to explore the process and outcome of reviews. Setting: UK care homes. Participants: Stroke survivors, family members, care home staff (review participants) and external staff involved in conducting reviews (assessors). Interventions: Modified Greater Manchester Stroke Assessment Tool (GM-SAT). Results: The observational study provided data on 74 stroke survivors across 51 care homes. In total, out of 74, 45 (61%) had unmet needs identified. Common unmet needs related to blood pressure, mobility, medicine management and mood. We conducted 25 qualitative interviews, including 13 review participants and 12 assessors. Three overarching qualitative themes covered acceptability of conducting reviews in care homes, process and outcomes of reviews, and acceptability of modified GM-SAT review toolkit. The modified GM-SAT review was positively valued, but stroke survivors had poor recall of the review event including the actions agreed. Care home staff sometimes assisted with reviews and highlighted their need for training to support day-to-day needs of stroke survivors. Assessors highlighted a need for clearer guidance on the use of the toolkit and suggested further modifications to enhance it. They also identified organizational barriers and facilitators to implementing reviews and communicating planned actions to GPs and other agencies. Conclusion: The modified GM-SAT provides a feasible means of conducting six-month reviews for stroke survivors in care homes and helps identify important needs. Further modifications have enhanced acceptability. Full implementation into practice requires staff training and organizational changes.

scholarly journals Questionable practices despite good intentions: coping with risk and impact from dementia-related behaviours in care homes

2017 ◽  
Vol 38 (9) ◽  
pp. 1933-1958 ◽  
Author(s):  
TAMARA BACKHOUSE ◽  
BRIDGET PENHALE ◽  
RICHARD GRAY ◽  
ANNE KILLETT
Keyword(s):  
Human Rights ◽  
Psychological Symptoms ◽  
Participant Observation ◽  
Care Home ◽  
Care Homes ◽  
Service Development ◽  
Ageing Population ◽  
Term Care ◽  
Staff Members ◽  
Care Home Staff

ABSTRACTCare-home residents with dementia can experience behavioural and psychological symptoms such as aggression, agitation, anxiety, wandering, calling out and sexual disinhibition. Care-home staff have a duty to keep residents safe. However, residents with dementia can pose particular challenges in this area. In this paper, we draw on a study which explored how care-home staff manage dementia-related behaviours. In-depth ethnographic case studies at four separate care homes were conducted in England. These involved interviews with 40 care-home staff and 384 hours of participant observation. Our analysis showed that some residents with dementia experience behaviours which can either create risks for, or negatively impact on, themselves and/or other residents or staff members. It emerged that the consequences of the behaviours, rather than the behaviours themselves, created difficulties for staff. To cope with the risk and impact of behaviours, staff employed multiple strategies such as surveillance, resident placement, restrictions and forced care. Using the data, we explore how actions taken by staff to manage the risk and impact of behaviours in these communal settings relate to residents’ human rights. Our findings have particular relevance for care-home staff who need support and guidance in this area, for service development worldwide and for the global ageing population whose valued human rights may become under threat, if they require long-term care.

scholarly journals Exploring the role of external experts in supporting staff to implement psychosocial interventions in care home settings: results from the process evaluation of a randomized controlled trial

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Claire A. Surr ◽  
Emily Shoesmith ◽  
Alys W. Griffiths ◽  
Rachael Kelley ◽  
Joanne McDermid ◽  
...  
Keyword(s):  
Process Evaluation ◽  
Controlled Trial ◽  
Care Home ◽  
Psychosocial Interventions ◽  
Care Homes ◽  
Successful Implementation ◽  
Care Home Staff ◽  
People With Dementia ◽  
External Expert ◽  
Expert Support

Abstract Background Psychosocial interventions offer opportunities to improve care for people with dementia in care homes. However, implementation is often led by staff who are not well prepared for the role. Some interventions use external experts to support staff. However little is known about external expert, care home staff and manager perceptions of such support. This paper addresses this gap. Methods Multi-methods study within a process evaluation of a cluster randomised controlled trial of Dementia Care Mapping™ (DCM). Interviews were conducted with six external experts who also completed questionnaires, 17 care home managers and 25 care home staff responsible for DCM implementation. Data were analysed using descriptive statistics and template analysis. Results Three themes were identified: the need for expert support, practicalities of support and broader impacts of providing support. Expert support was vital for successful DCM implementation, although the five-days provided was felt to be insufficient. Some homes felt the support was inflexible and did not consider their individual needs. Practical challenges of experts being located at a geographical distance from the care homes, limited when and how support was available. Experts gained knowledge they were able to then apply in delivering DCM training. Experts were not able to accurately predict which homes would be able to implement DCM independently in future cycles. Conclusions An external expert may form a key component of successful implementation of psychosocial interventions in care home settings. Future research should explore optimal use of the expert role.

scholarly journals “Music in Mind” and Manchester Camerata: an exploratory qualitative evaluation of engagement in one care home in Northwest England

2017 ◽  
Vol 18 (1) ◽  
pp. 69-80 ◽  
Author(s):  
Sarah Campbell ◽  
Nick Ponsillo ◽  
Paul Budd ◽  
John Keady
Keyword(s):  
Group Dynamics ◽  
Care Home ◽  
Qualitative Evaluation ◽  
Data Set ◽  
Content Type ◽  
North West ◽  
Care Home Staff ◽  
The North ◽  
People With Dementia ◽  
The Moment

Purpose The purpose of this paper is to consider the work conducted by Manchester Camerata (an internationally renowned and world-class chamber orchestra) programme for people with dementia in one care home in the north west of England. The study aim was to undertake an exploratory qualitative evaluation of experiences of those taking part in its ten week “Music in Mind” programme, namely care home staff, Manchester Camerata musicians/organisational staff, care home activity workers, the assigned music therapist and visiting family carers. Design/methodology/approach During July-September 2014 a sample of 11 participants was recruited and a total of 19 interviews conducted over ten weeks. All respondents were offered the opportunity to be interviewed more than once. Interview data were supplemented by information gathered at two musicians de-brief sessions and from two activity workers’ diaries. All data was organised using NVivo 10 and thematic analysis applied to the whole data set. People with dementia could not be included in the sample owing to the time limitations on starting and completing the evaluation. Findings This analytical process generated three overarching themes: Making it Happen, which referred to the contextual, structural and organisational considerations necessary for setting up the engagement programme; Orchestrating Person-centred Care, which addressed the importance of building relationships through person to person communication; Making Musical Connections, which identified the sensory and embodied qualities of live music and the need to capture in-the-moment experiences. Originality/value Whilst each of these theme headings has slightly different meanings and applications to each of the participating stakeholders, the evaluation highlights the potential power of improvised music making to equalise and harmonise the group dynamics by co-creating “in-the-moment” experiences.

scholarly journals How do we provide good mealtime care for people with dementia living in care homes? A systematic review of carer–resident interactions

Dementia ◽  
2021 ◽  
pp. 147130122110020
Author(s):  
James Faraday ◽  
Clare Abley ◽  
Fiona Beyer ◽  
Catherine Exley ◽  
Paula Moynihan ◽  
...  
Keyword(s):  
Systematic Review ◽  
Hospital Admissions ◽  
Care Home ◽  
Good Practice ◽  
Oral Intake ◽  
Care Homes ◽  
Synthesis Process ◽  
Future Research ◽  
Care Home Staff ◽  
People With Dementia

People with dementia who live in care homes often depend on care home staff for help with eating and drinking. It is essential that care home staff have the skills and support they need to provide good care at mealtimes. Good mealtime care may improve quality of life for residents, and reduce hospital admissions. The aim of this systematic review was to identify good practice in mealtime care for people with dementia living in care homes, by focusing on carer-resident interactions at mealtimes. Robust systematic review methods were followed. Seven databases were searched: AgeLine, BNI, CENTRAL, CINAHL, MEDLINE, PsycINFO and Web of Science. Titles, abstracts, and full texts were screened independently by two reviewers, and study quality was assessed with Joanna Briggs Institute tools. Narrative synthesis was used to analyse quantitative and qualitative evidence in parallel. Data were interrogated to identify thematic categories of carer-resident interaction. The synthesis process was undertaken by one reviewer, and discussed throughout with other reviewers for cross-checking. After title/abstract and full-text screening, 18 studies were included. Some studies assessed mealtime care interventions, others investigated factors contributing to oral intake, whilst others explored the mealtime experience. The synthesis identified four categories of carer-resident interaction important to mealtime care: Social connection, Tailored care, Empowering the resident, and Responding to food refusal. Each of the categories has echoes in related literature, and provides promising directions for future research. They merit further consideration, as new interventions are developed to improve mealtime care for this population.

scholarly journals Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence

2017 ◽  
Vol 21 (42) ◽  
pp. 1-220 ◽  
Author(s):  
Claire Goodman ◽  
Christine Norton ◽  
Marina Buswell ◽  
Bridget Russell ◽  
Danielle Harari ◽  
...  
Keyword(s):  
Faecal Incontinence ◽  
Care Home ◽  
Realist Synthesis ◽  
Care Homes ◽  
Cochrane Library ◽  
Advanced Dementia ◽  
Limited Evidence ◽  
Daily Work ◽  
Care Home Staff ◽  
People With Dementia

BackgroundEighty per cent of care home residents in the UK are living with dementia. The prevalence of faecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes.ObjectiveTo provide a theory-driven explanation of the effectiveness of programmes that aim to improve FI in people with advanced dementia in care homes.DesignA realist synthesis. This was an iterative approach that involved scoping of the literature and consultation with five stakeholder groups, a systematic search and analysis of published and unpublished evidence, and a validation of programme theories with relevant stakeholders.Data sourcesThe databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, Scopus, SocAbs, Applied Social Sciences Index and Abstracts, BiblioMap, Sirius, OpenGrey, Social Care Online and the National Research Register.ResultsThe scoping identified six programme theories with related context–mechanism–outcome configurations for testing. These addressed (1) clinician-led support, assessment and review, (2) the contribution of teaching and support for care home staff on how to reduce and manage FI, (3) the causes and prevention of constipation, (4) how the cognitive and physical capacity of the resident affect outcomes, (5) how the potential for recovery, reduction and management of FI is understood by those involved and (6) how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Data extraction was completed on 62 core papers with iterative searches of linked literature. Dementia was a known risk factor for FI, but its affect on the uptake of different interventions and the dementia-specific continence and toileting skills staff required was not addressed. Most care home residents with FI will be doubly incontinent and, therefore, there is limited value in focusing solely on FI or on single causes of FI such as constipation. Clinical assessment, knowledge of the causes of FI and strategies that recognise the individuals’ preferences are necessary contextual factors. Valuing the intimate and personal care work that care home staff provide to people living with dementia and addressing the dementia-related challenges when providing continence care within the daily work routines are key to helping to reduce and manage FI in this population.LimitationsThe synthesis was constrained by limited evidence specific to FI and people with dementia in care homes and by the lack of dementia-specific evidence on continence aids.ConclusionsThis realist synthesis provides a theory-driven understanding of the conditions under which improvement in care for care home residents living with dementia and FI is likely to be successful.Future workFuture multicomponent interventions need to take account of how the presence of dementia affects the behaviours and choices of those delivering and receiving continence care within a care home environment.Study registrationThis study is registered as PROSPERO CRD42014009902.FundingThe National Institute for Health Research Health Technology Assessment programme.

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