Healthcare professionals' experiences and views of providing continence support and advice to people living at home with dementia: "That's a carer's job".

BACKGROUND: People living with dementia at home and their family carers often feel unsupported by healthcare professionals in managing continence problems. In turn, primary and community-based healthcare professionals have reported lacking specific knowledge on dementia-continence. This study aimed to understand more about healthcare professionals' experiences and views of supporting people living with dementia experiencing continence problems, as part of developing acceptable resources. Having a nuanced understanding of unmet need would facilitate the design of engaging resources that enable healthcare professionals to provide more effective continence support to people living with dementia at home. METHODS: Semi-structured interviews were conducted with a range of healthcare professionals (n = 31) working in primary and community care in the South of England in 2023. Transcribed interviews were uploaded to NVivo 12, then analysed inductively and deductively using a thematic framework. RESULTS: Continence-related conversations were avoided by many healthcare professionals due to lack of dementia-continence specific knowledge. Many considered that continence problems of people living with dementia were largely outside their remit once a physical cause had been ruled out. This contributed to a lack of priority and proactivity in raising the subject of continence in their consultations. Challenges to providing support included limited consultation time and lack of access to specialist services with availability to support individuals. CONCLUSION: There is substantial scope to support primary and community-based healthcare professionals in their provision of continence-related support and advice to people living at home with dementia. This includes addressing knowledge deficits, enhancing confidence and instilling a sense of accomplishment.

Home-care providers as collaborators in commissioning arrangements for older people.

In England, care to support people living at home is largely commissioned by local authorities (statutory organisations with responsibility for social care in specific localities) from non-statutory home-care providers (for-profit, not-for-profit, voluntary). This paper explores how managers of these services perceive commissioning arrangements and their impact on home-care providers, the care workforce and service users. Little formal research of providers' experiences of working with local authorities in a commissioning model is available. A qualitative study employed semi-structured telephone interviews with 20 managers of for-profit home-care providers from 10 selected local authority areas in England. Data were analysed using thematic analysis to identify main and subsidiary themes. Home-care providers reported operating in a complex and changeable partnership with commissioners, characterised by: (a) relationships ranging from transactional to collaborative, (b) providers expressing a strong sense of public service motivation, (c) commissioning practices that were complex to negotiate, time-consuming and overly prescriptive, (d) frequent changes in commissioning practices and a perceived lack of strategic planning, which were reported as contributing to uncertainty and tension for providers and confusion for service users. Attempting to operate a market model with tightly prescribed contracts is likely to be unsustainable. An alternative approach based on a collaborative model of joint responsibility for providing home care is recommended drawing on a conceptual framework of principal-steward relationships in contracting.

Implementing the Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: mixed-method process evaluation alongside a pragmatic randomised trial.

OBJECTIVES: The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package designed to improve the cognitive abilities, function and well-being of people with early-stage dementia and their carers, by providing a range of memory aids, together with appropriate training and support. This sub-study aimed to assess implementation and identify contextual factors potentially associated with participant outcomes. METHOD: A mixed-methods approach was adopted alongside the pragmatic randomised trial. Data were obtained from intervention records and interviews with five dementia support practitioners across seven National Health Service Trusts in England and Wales. A reporting framework was constructed from available literature and data assessed by descriptive statistics and thematic analysis. RESULTS: Participation and engagement was high with 126 out of 128 participants completing the intervention with packages tailored to individual participants. Misplacing items and poor orientation to date and time were common areas of need. Memory aids frequently supplied included orientation clocks (91%), whiteboards (60%), calendars (43%) and notebooks (32%), plus bespoke items. Intervention duration and timing were broadly consistent with expectations. Variation reflected participants' needs, circumstances and preferences. Qualitative findings suggested a potentially positive impact on the well-being of people with dementia and their carers. Issues associated with successful roll-out of the intervention are explored in the discussion. CONCLUSION: Successful implementation increased confidence in future findings of the randomised trial. Depending on these, DESCANT may prove a scalable intervention with potential to improve the function and quality of life of people with dementia and their carers.

Dementia Early-Stage Cognitive Aids New Trial (DESCANT) of memory aids and guidance for people with dementia: randomised controlled trial.

BACKGROUND: Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE: To investigate effects of memory aids and guidance by dementia support practitioners (DSPs) for people in early-stage dementia through a pragmatic, randomised controlled trial. METHODS: Of 469 people with mild-to-moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) Score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; S-MMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS: DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS Score increased to 14.6 (SD: 10.4) in intervention and 12.6 (SD: 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between-group difference was 0.38 (95% CI: -0.89 to 1.65, p=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS: This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers. TRIAL REGISTRATION NUMBER: Current Controlled Trials ISRCTN12591717.

Evaluation of absences and myoclonic seizures in adults with genetic (idiopathic) generalized epilepsy: a comparison between self-evaluation and objective evaluation based on home video-EEG telemetry.

People with focal epilepsies are known to under-document their seizures, but there is no data on self-documentation in adults with genetic (idiopathic) generalized epilepsy (GGE/IGE). We assessed the accuracy of self-evaluation of typical absences (TA) or myoclonic seizures (MS) in adults with IGE based on home video-EEG telemetry (HVET). Patients' own estimates were compared to the objective count of definite TA and MS, performed visually. We considered definite TA as generalized spike-wave discharges (GSWD) that met any of the following criteria: 1) coinciding with clear behavioural arrest on video, 2) followed after a few seconds by positive indication that an absence occurred, or 3) in the absence of video, consistently coinciding with clear motor arrest, as evidenced by interruption of continuous muscle activity. For each patient, we also classified probable TA as GSWDs that were longer than those corresponding to the shortest definite TA on HVET or based on the most recent sleep-deprived EEG (SDEEG). From the first 300 consecutive adults who had HVET, 24 had IGE with TA and / or MS; 23 were women. Only one patient had newly diagnosed IGE. Erroneous self-assessment of TA and MS was noted in 16/24 patients (66.7%). Seizures were overestimated in nine (37.5%) and underestimated in seven (29.2%). Only one patient (4.2%) documented all her TA and MS without false-positive estimates. Overestimation (but not underestimation) of TA on HVET could be predicted when patients reported daily or multiple weekly TA and a recent SDEEG was either normal or contained only subclinical GSWD (p=0.0095). Under- and over-self-documentation of TA and MS occurred in two thirds of adults with GGE/IGE, with substantial impact on their outpatient management and treatment. Diagnostic HVET is a useful tool for the detection of erroneous self-evaluation in these patients.

The Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: A goal attainment scaling approach to promote self-management.

OBJECTIVES: This study investigated goals identified by people with dementia and their carers to promote the self-management of symptoms and abilities; measured achievement using goal attainment scaling (GAS); and explored the reflections of Dementia Support Practitioners (DSPs) facilitating it. METHODS AND DESIGN: Within this pragmatic randomised trial, DSPs gave memory aids, training and support to people with mild to moderate dementia and their carers at home. Data were collected across seven NHS Trusts in England and Wales (2016-2018) and abstracted from intervention records and semi-structured interviews with DSPs delivering the intervention, supplemented by a subset of the trial dataset. Measures were created to permit quantification and descriptive analysis and interview data thematically analysed. A GAS measure for this intervention in this client group was derived. RESULTS: Engagement was high across the 117 participants and 293 goals were identified. These reflected individual circumstances and needs and enabled classification and assessment of their attainment. Seventeen goal types were identified across six domains: self-care, household tasks, daily occupation, orientation, communication, and well-being and safety. On average participants achieved nominally significant improvement regarding the specified goals of 1.4 with standard deviation of 0.6. Five interviews suggested that DSPs' experiences of goal setting were also positive. CONCLUSIONS: GAS is useful for assessing psychosocial interventions for people with early-stage dementia. It has a utility in identifying goals, promoting self-management and providing a personalised outcome measure. There is a strong case for exploring whether these clear benefits translate to other interventions in other populations in other places.

Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia.

BACKGROUND: Qualitative methods are increasingly included in larger studies to provide a richer understanding of people's experience. This paper explores the potential of using a novel approach to embedded qualitative design as part of an observational study examining the effectiveness of home support for people in later stage dementia in England. The method involved collecting and analysing unsolicited conversational comments made by participants as they completed standardised measures. An evaluation of the method is presented using the voices of participants to illustrate its potential. METHODS: The conversations of 17 carers recruited to an observational study were audio recorded to gather commentary made while completing a structured interview. Data were interrogated using thematic analysis to investigate the feasibility of conducting an embedded qualitative study, the potential richness of the material and participants' reactions to formal questioning and participating in research. RESULTS: The findings revealed that qualitative data were available from this approach. Analysis generated three themes from carers: conflicting carer emotions; the importance of maintaining normality and agency within day-to-day life; and tensions between these desires and making use of formal services. Important issues for carers were revealed establishing the benefit of using the method. The advantages of exploiting unsolicited conversation included enhancing understanding of people's lived experience, reducing participant burden in research and easing the process of data collection. In addition, it provided an opportunity to evaluate individuals' experience of the research process. CONCLUSIONS: The findings demonstrate how unsolicited comments during structured interviews may appear incidental but can reveal important aspects of living with dementia. The method also emphasised methodological challenges for research in dementia, including the influence and impact of the research context. Further research is required to evaluate the method with other groups including people with dementia themselves.

Carer preferences for home support services in later stage dementia.

OBJECTIVES: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia. METHOD: Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall. CONCLUSIONS: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial.

BACKGROUND: There is a growing need for an evidence-based approach to home support for people with dementia and their carers following diagnosis but research on the effectiveness and cost-effectiveness of different approaches is sparse. The Dementia Early Stage Cognitive Aids New Trial (DESCANT) will evaluate the clinical and cost-effectiveness of a range of memory aids, training and support to people with mild to moderate dementia and their carers at home and compares that intervention with treatment as usual. METHODS/DESIGN: This is a multi-site, pragmatic randomised trial preceded by a feasibility study and internal pilot. We aim to allocate at random 360 pairs comprising a person with mild to moderate dementia and an identified carer between the DESCANT intervention and treatment as usual. We assess participants at baseline, 13 and 26 weeks. The primary outcome measure is the Bristol Activities of Daily Living Scale; other participant outcomes include cognition, quality of life, activities of daily living and social networking; carer outcomes include quality of life, sense of competence and mental health. To enhance this quantitative evaluation we are conducting a qualitative component and a process evaluation to assess the implementation process and identify contextual factors associated with variation. DISCUSSION: The DESCANT intervention reflects current policy to enhance the capabilities of people with dementia after diagnosis and their carers. If it is clinically and cost-effective, its modest nature and cost will enhance the likelihood of it being incorporated into mainstream practice. TRIAL REGISTRATION: Current Controlled Trials, ISRCTN12591717 . Registered on 29 July 2016. Protocol number: 31288: North West - Haydock Research Ethics Committee, 20/06/2016, ref.: 16/NW/0389.

Systematic review: Effective home support in dementia care, components and impacts - Stage 2, effectiveness of home support interventions.

AIM: The aim of this study was to explicate the outcomes of home support interventions for older people with dementia and/or their carers to inform clinical practice, policy and research. BACKGROUND: Most people with dementia receive support at home. However, components and effectiveness of home support interventions have been little explored. DESIGN: Systematic review with narrative summary. DATA SOURCES: Electronic searches of published studies in English using PubMed, Cochrane Central Register of Controlled Trials, PsychINFO, CINAHL, Applied Social Science Index and CSA Social Services Abstracts. Databases and sources were searched from inception to April 2014 with no date restrictions to locate studies. REVIEW METHODS: The PRISMA statement was followed and established systematic review methods used. Using 14 components of care for people with dementia and their carers, identified previously, data across studies were synthesized. Interventions were grouped and described and effectiveness ratings applied. Qualitative studies were synthesized using key themes. RESULTS: Seventy studies (four qualitative) were included. Most were directed to carers and of high quality. Seven interventions for carers and two for people with dementia were identified, covering 81% of studies. Those relating to daily living, cognitive training and physical activity for people with dementia were absent. Measures of effectiveness were influenced mainly by the intensity (duration and frequency) of interventions. Those containing education, social support and behaviour management appeared most effective. CONCLUSION: These interventions reflect emergent patterns of home support. Research is required to identify effective interventions linked to the stage of dementia, which can be applied as part of routine clinical care.

People with dementia and carer preferences for home support services in early-stage dementia.

OBJECTIVES: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area. METHOD: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001). CONCLUSIONS: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in 'living well' but for which there remains limited evidence.

Practitioners preferences of care coordination for older people: A discrete choice experiment.

These findings demonstrate the importance of organisations providing care coordination for older people receiving long-term funding. Further research is required to investigate the influence of service setting on practitioner preferences. This study explored practitioner preferences about the relative value of attributes of care coordination services for older people. A Discrete Choice Experiment (DCE) survey was used to identify the views of 120 practitioners from 17 services in England in 2015. The survey design was informed by an analysis of standards of care coordination, a postal survey and a consultation with carers of older people. Results of the DCE survey were supplemented by a content analysis of qualitative comments and fieldwork notes. Most respondents were over 30 years of age, female and almost half worked part-time. Continuity of care (care provided by the same care coordinator) and the ability to access the range of services outlined in the care plan were the most important service attributes. Service setting influenced practitioner preferences. Those in specialist services for people with dementia identified the length of time a service was provided as another important attribute. The DCE methodology has provided the opportunity to systematically canvas practitioner preferences.

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries.

OBJECTIVES: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

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

BACKGROUND: 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.

Approaches to Information Sharing and Assessment: Evidence From a Demonstration Program.

This article categorizes and delineates approaches to information sharing and assessment in a demonstration program established by central government in England. Its purpose was to develop and test a set of principles relating to a general assessment framework for adults in demonstrator sites, maximizing the use of information technology where feasible. The method employed comprised the systematic analysis of documents associated with the funding application and a telephone interview with personnel in each site. Data were collected from 17 initiatives, 13 of which provided detailed information on information sharing within the assessment process. A taxonomy of approaches was produced and information sharing in the assessment process reported in terms of setting and personnel; approaches to data collection, storage, and transfer; and changes to the process. A classification of the initiatives within a demonstration program was a useful means of describing them. Measures of intermediate outcomes captured changes in information sharing between agencies. Local initiatives were successful in promoting electronic information sharing between health and social care agencies.

A qualitative study exploring counselling for release of information to participants of a donor-assisted conception programme.

Worldwide, donor-assisted conceptions are increasing with legislative reforms in some countries providing opportunities for participants of a donor-assisted conception programme, i.e. recipients, donors, donor-conceived adults and their genetically related siblings and half-siblings, to access information. Whilst policy and practice for accessing donor-identifying information vary, there has been no research exploring the perceptions and experiences of those who provide the service. This study aimed to explore the perceptions and experiences of Australian and New Zealand infertility counsellors who provide counselling for release of information to participants of a donor-assisted conception programme. Using a qualitative research design, in-depth interview data of six infertility counsellors were thematically analysed to identify key themes. We report the primary themes that emerged from the data which include professional perspectives on the role of counsellor in the counselling process, the professional and societal responsibility to provide counselling, and influences on professional practice. Findings from this qualitative study can be used as a platform for larger international studies on the clinical practice of donor information release and to inform clinical practice and service delivery. The implications of these results for policy and future longitudinal research are also discussed.

An examination of assessment arrangements and service use for older people in receipt of care management.

With anticipated greater demand for formal care services globally, this article examines the sociodemographic and health characteristics of frail older people in receipt of community support. Data were collected from audits of case files of older people receiving care management at two time points during which two government policy initiatives were implemented to promote greater standardization in health and social care provision for older people in England. Findings at Time 2 revealed that there were higher levels of physical and mental impairment and more health care assessments undertaken. There was a slight decrease in home care receipt but a marginal increase of more intensive home care provision. Service users living with a carer were less likely to receive home care but more likely to receive respite care or day care than those living alone. The policy goal of widening access to specialist health and social care services for older people with mental health problems was achieved. Guidance that focused eligibility criteria on the identification of older people with complex needs required the availability of appropriate support and services. Irrespective of policy initiatives, the sociodemographic characteristics of older people and the availability of informal support are principal determinants of service provision.

Social care in older people's services--facilitating the flexible use of resources.

Personal budgets in social care are a mechanism for the allocation of resources for care that permits users'greater choice and flexibility. This study was designed to explore developments in care coordination arrangements by examining the flexible use of resources. Two national surveys identified agencies with such arrangements in older people's services in advance of this agenda, described here as innovative authorities. Telephone interviews with their representatives explored salient factors in the development, focus, and operation of personal budgets. Carers were the main recipients, and there was also evidence of more appropriate use of resources structured around service users' needs. Implementation of personal budgets requires authorities to be more creative and flexible in respect of internally held budgets to meet the needs and wishes of older service users. This study provides evidence that some of these requirements have already been adopted by a few agencies.

Promoting personalization in social care services for older people.

This article presents findings on 4 themes associated with the personalization of social care for older people: integration of health and social care services; initiatives that prevent the need for more costly interventions; services to maintain people at home; and systems that promote choice, control, and flexibility. The quantitative study utilized data from a national postal survey conducted in England. Findings suggest variable progress regarding the range and style of support available to older people. These are discussed in the context of service integration, community-based services, and consumer-directed care. Implications for service development and future research are highlighted.