scholarly journals Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study

2017 ◽  
Vol 29 (7) ◽  
pp. 1213-1221 ◽  
Author(s):  
Helen Chester ◽  
Paul Clarkson ◽  
Jane Hughes ◽  
Ian Russell ◽  
Joan Beresford ◽  
...  
Keyword(s):  
Observational Study ◽  
Service Providers ◽  
Geographical Area ◽  
National Study ◽  
Structured Interviews ◽  
Major Health Problem ◽  
Home Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

ABSTRACTBackground:Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers.Methods:This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers.Conclusions:This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

Impact of a dementia-specific program of equine-assisted activities: providers’ perspectives

2019 ◽  
Vol 20 (2) ◽  
pp. 37-47
Author(s):  
Beth Fields ◽  
Wendy Wood ◽  
Rebecca Lassell
Keyword(s):  
Service Providers ◽  
Institutional Care ◽  
Complex Interventions ◽  
Well Being ◽  
Scientific Development ◽  
Structured Interviews ◽  
Content Type ◽  
People With Dementia ◽  
Person With Dementia ◽  
Equine Assisted

Purpose Establishing acceptability of complex interventions to stakeholders is vital in early scientific development. The purpose of this paper is to ascertain the acceptability of a program of equine-assisted activities (EAAP) for people with dementia by elucidating programmatic practices needed to enhance their safety and quality of life (QoL) from the perspectives of service providers. Design/methodology/approach Semi-structured interviews with five providers were analyzed using a basic qualitative approach. Findings Providers perceived the EAAP as acceptable and revealed potential mechanisms of change supporting well-being, including aspects related to the physical and social environment and person with dementia. Linkages identified among the EAAP and its physical and social context support its complexity. Providers explicated program practices that promoted safety and QoL, such as implementing staff trainings and tailoring activities to each person’s preferences and needs. These practices aligned with best dementia care approaches, underscoring that the EAAP is a promising complex intervention that merits further scientific development. Originality/value This work is novel and adds to the literature by illuminating the role of a community-based, animal-assisted program for enhancing the QoL of older adults with dementia residing in institutional care facilities.

Dementia in rural settings: examining the experiences of former partners in care

2017 ◽  
Vol 39 (2) ◽  
pp. 340-357 ◽  
Author(s):  
RACHEL V. HERRON ◽  
MARK W. ROSENBERG
Keyword(s):  
Long Term Care ◽  
Structured Interviews ◽  
Northern Ontario ◽  
Term Care ◽  
Home Support ◽  
People With Dementia ◽  
Rural Settings ◽  
Informal Carers ◽  
Person With Dementia

ABSTRACTInformal carers, also referred to as partners in care, provide the bulk of care to people living with dementia across a range of community settings; however, the changing experiences and contexts of providing informal care for people with dementia in rural settings are under-studied. Drawing on 27 semi-structured interviews with former partners in care in Southwestern and Northern Ontario, Canada, we examine experiences of providing and accessing care over the course of the condition and across various settings. Our findings illustrate the challenges associated with navigating the system of care, finding people who understand dementia in the surrounding community, negotiating hours of home support, facing resistance to respite from the person with dementia, and feeling pressured into long-term care. We argue that partners' time, bodies and choices are spatially constrained within rural and small-town settings and the current systems of home, community and long-term care.

scholarly journals A qualitative study of the shared experience of humour between people living with dementia and their partners

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1794-1810
Author(s):  
Helen Hickman ◽  
Chris Clarke ◽  
Emma Wolverson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Emotional Experience ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Relationship Strength ◽  
Social And Emotional ◽  
People With Dementia ◽  
Care Partners ◽  
Person With Dementia

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: ‘Humour Has Always Been There (and Always Will Be)’; ‘Withstanding Dementia’ and ‘Renewing the Value of Humour in Dementia’. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.

scholarly journals Systematic Review Investigating Multi-disciplinary Team Approaches to Screening and Early Diagnosis of Dementia in Primary Care – What are the Positive and Negative Effects and Who Should Deliver It?

2017 ◽  
Vol 15 (1) ◽  
pp. 5-17 ◽  
Author(s):  
Toby Smith ◽  
Jane Cross ◽  
Fiona Poland ◽  
Felix Clay ◽  
Abbey Brookes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Early Diagnosis ◽  
Service Providers ◽  
Care Practice ◽  
Initial Contact ◽  
Negative Effects ◽  
People With Dementia ◽  
Health And Social Care ◽  
Early Diagnostic

Background: Primary care services frequently provide the initial contact between people with dementia and health service providers. Early diagnosis and screening programmes have been suggested as a possible strategy to improve the identification of such individuals and treatment and planning health and social care support. Objective: To determine what early diagnostic and screening programmes have been adopted in primary care practice, to explore who should deliver these and to determine the possible positive and negative effects of an early diagnostic and screening programme for people with dementia in primary care. Methods: A systematic review of the literature was undertaken using published and unpublished research databases. All papers answering our research objectives were included. A narrative analysis of the literature was undertaken, with the CASP tools used appropriately to assess study quality. Results: Thirty-three papers were identified of moderate to high quality. The limited therapeutic options for those diagnosed with dementia means that even if such a programme was instigated, the clinical value remains questionable. Furthermore, accuracy of the diagnosis remains difficult to assess due to poor evidence and this raises questions regarding whether people could be over- or under-diagnosed. Given the negative social and psychological consequences of such a diagnosis, this could be devastating for individuals. Conclusion: Early diagnostic and screening programmes have not been widely adopted into primary care. Until there is rigorous evidence assessing the clinical and cost-effectiveness of such programmes, there remains insufficient evidence to support the adoption of these programmes in practice.

scholarly journals Carers’ experiences of timely access to and use of dementia care services in eight European countries

2019 ◽  
pp. 1-18 ◽  
Author(s):  
Hannah Jelley ◽  
Liselot Kerpershoek ◽  
Frans Verhey ◽  
Claire Wolfs ◽  
Marjolein de Vugt ◽  
...  
Keyword(s):  
Service Use ◽  
Study Participant ◽  
Formal Care ◽  
Structured Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Timely Access ◽  
Mixed Feelings ◽  
Barriers To Service ◽  
Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

scholarly journals Dementia Friendly Hospital Design: Key Issues for Patients and Accompanying Persons in an Irish Acute Care Public Hospital

2019 ◽  
Vol 13 (1) ◽  
pp. 48-67 ◽  
Author(s):  
Dimitra Xidous ◽  
Tom Grey ◽  
S. P. Kennelly ◽  
Cathy McHale ◽  
Desmond O’Neill
Keyword(s):  
Older People ◽  
Negative Impact ◽  
Spatial Scales ◽  
Hospital Setting ◽  
Hospital Environment ◽  
Multiple Perspectives ◽  
Structured Interviews ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

Objectives: Research was conducted to investigate the impact of the hospital environment on older people including patients with dementia and their accompanying persons (APs). The article presents key research findings in the case study hospital. Background: For many patients, the hospital is challenging due to the busy, unfamiliar, and stressful nature of the environment. For a person with dementia, the hospital experience can be exacerbated by cognitive impairment and behavioral or psychological symptoms and can therefore prove to be a frightening, distressing, and disorientating place. Method: The findings are based on a stakeholder engagement process where the research team spent approximately 150 hr observing within the hospital, administered 95 questionnaires to patients and/or APs, and conducted 12 structured interviews with patients and APs. A thematic analysis was employed to analyze and generate key themes emerging from the process. Results: Themes were grouped into overarching issues and design issues across spatial scales. Conclusion: This research confirms the negative impact of the acute hospital setting on older people with cognitive impairments including dementia and delirium. The multiple perspectives captured in this study, including most importantly people with dementia, ensure that stakeholder needs can be used to inform the design of the hospital environment. The research points to the value of understanding the lived experience of the person with dementia and APs. The voices of patients, particularly persons with dementia and their APs, are a crucial element in helping hospitals to fulfill their role as caregiving and healing facilities.

scholarly journals Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice)

Dementia ◽  
2017 ◽  
Vol 18 (7-8) ◽  
pp. 3173-3186 ◽  
Author(s):  
Clarissa Giebel ◽  
Brenda Roe ◽  
Anthony Hodgson ◽  
David Britt ◽  
Paul Clarkson ◽  
...  
Keyword(s):  
Data Collection ◽  
Public Involvement ◽  
Reference Group ◽  
Future Research ◽  
Advisory Group ◽  
Model Case ◽  
Home Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Case Vignettes

Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement – respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.

scholarly journals Communicating with library patrons and people with dementia: Tracing an ethic of care in professional communication guidelines

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 899-914
Author(s):  
Nicole K Dalmer ◽  
DG Campbell
Keyword(s):  
Interpersonal Relationships ◽  
Ethic Of Care ◽  
Service Providers ◽  
Information Service ◽  
Dementia Care ◽  
Professional Communication ◽  
Moral Principles ◽  
People With Dementia ◽  
Health And Social Care ◽  
Reference Librarians

In both library reference work and dementia care, communication between personnel and service recipients can be both complex and complicated. Professionals in both fields have therefore developed protocols and standards to assist personnel in handling these interactions. In this article we detail an exploratory comparative study that used an ethic of care framework to compare prominent guidelines for reference librarians (American Library Association’s Reference and User Services Association’s Guidelines for behavioral performance of reference and information service providers) with guidelines for workers in long-term dementia care settings (the National Institute for Health and Care Excellence’s Guideline on supporting people with dementia and their carers in health and social care). We explored how both sets of Guidelines frame the act of communication as a combination of regulated procedure and empathetic discourse to determine how the similarities among and differences between these two guidelines provide useful insights into each other. Our examination was structured using an ethic of care lens, which emphasizes the importance of interpersonal relationships, reciprocity, and empathetic benevolence. Using specific phrases in each set of Guidelines that align with and are evidence of Tronto’s four moral principles of care, we ultimately discovered, in both sets of Guidelines, an underlying ethic of care: a repeated insistence upon embedding procedures within behaviour that manifests attentiveness, responsibility, responsiveness, and competence.

A mainstream social housing response to dementia

2016 ◽  
Vol 20 (3) ◽  
pp. 144-150 ◽  
Author(s):  
Juliet Bligh
Keyword(s):  
Social Housing ◽  
Good Practice ◽  
Structured Interviews ◽  
Senior Managers ◽  
Content Type ◽  
Telephone Interviews ◽  
People With Dementia ◽  
Health And Social Care ◽  
Assessment Approach

Purpose The purpose of this paper is to explore how social housing providers could respond to residents living with dementia in non-specialist housing. Design/methodology/approach A research framework was developed from published material and used to assess how dementia friendly a national housing provider was, and what could be different. Electronic surveys were completed by 209 members of staff; semi-structured interviews with 18 senior managers and an external contractor; a customer focus group with five residents. A literature review and telephone interviews with housing providers identified current areas of innovation and good practice which informed the research recommendations. Findings There are ways a non-specialist social housing provider can develop dementia friendly services through developing a customer focused approach, staff awareness raising and training, and through working collaboratively with specialist statutory and non-statutory services across health and social care. These have the potential to impact positively on the quality of life of residents with dementia or caring for people with dementia. Practical implications Social housing providers should be considering their older residents, and how they can design and develop services to respond to specific needs. Originality/value There is limited understanding of how mainstream housing providers could and should develop an offer for their residents living with dementia. This research provides an assessment approach and has developed ideas about what this offer could look like.

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