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Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

Background: It is likely that one-third of people that experience a stroke will be dependent on others for their care after discharge from hospital. Aims: This study aims to explore the perspectives of a range of stakeholders about the challenges impacting on a smooth transition from hospital to home following a stroke. Methods: A qualitative study was conducted, which involved people living with stroke (n=3), family carers (n=3) and senior nurses (n=5) from one health trust in the UK. Face-to-face interviews, telephone interviews and open response questionnaires were used for data collection. An inductive approach informed data analysis. Findings: The three main themes that emerged from the data analysis were 1) communication and information, 2) support mechanisms, and 3) organisational issues. The findings indicate a gap between what the service is presently delivering and what patients and carers require for a smooth care transition from hospital to home. Conclusions: The author recommends timely, coordinated discharge planning that actively involves the patient and family carer, the implementation of day leave and weekend leave, and the involvement of the family carer in providing some aspects of care for their relative in the hospital environment.

Changes in socio-emotional functioning in people living with dementia (PLWD) are common; however, little is known about the broader effects these may have on wellbeing. This study examined socio-emotional functioning over time and associations with the wellbeing of PLWD and their family carers.One hundred and one individuals with a diagnosis of dementia and their respective carers completed the Social Emotional Questionnaire (assessing emotion recognition, empathy, social relationships and social behaviour) alongside measures of dementia severity, cognition, mood, stress, and relationship quality. Sixty-six dyads were reassessed on the same measures at 12 months post-baseline, and 51 dyads again at 20 months post-baseline.When rated by the PLWD, there was no change in socio-emotional functioning over time; however, carers reported a significant decline over time. For both carers and the PLWD, poorer wellbeing measures were indicative of worse socio-emotional functioning at Time 1, though only dementia type, quality of life and relationship quality impacted upon the trajectory of socio-emotional decline over time.Changes in social and emotional functioning are evident early in the course of dementia and worsen within 20 months. Both carer characteristics and those of the PWLD affected reporting of social and emotional functioning. These data are useful for guiding the provision of appropriate education and care.

A tanulmány a demenciával élő személyeket otthonukban gondozók (azaz a családi gondozók) életminőségével foglalkozik. Magyarországon a demenciával élő hozzátartozójukat gondozók körében ez idáig nem készült átfogó empirikus vizsgálat. A tanulmány célja, hogy előkészítsen és megalapozzon egy demenciával élő hozzátartozókat gondozók körében végzendő hazai empirikus szociológiai vizsgálatot. A narratív irodalmi áttekintés módszerével – és mindemellett támaszkodva az elérhető szisztematikus irodalmi áttekintésekre is – a tanulmány a következő kérdésekre keres választ: hogyan, milyen mérőeszközökkel mérhető a gondozással összefüggő életminőség; milyen specifikumai és dimenziói vannak az ilyen gondozói életminőségnek; milyen tényezők befolyásolhatják a gondozók életminőségét a külföldi szakirodalom alapján? A tanulmány emellett arra is vállalkozik, hogy ismertesse a demenciával élő személyek gondozásával összefüggésben elérhető hazai adatokat, vagy még inkább rámutasson ezek szűkösségére és a további kutatások szükségességére.

This study explored an established primary care–based dementia pathway in New Zealand (NZ) and nurse practitioner dementia diagnosis and care in 1 small United States state that has adopted a value-based delivery model. Central to the NZ model was the education of primary care providers, clear delineation of specialists’ support and referral pathways, and routine and predictable family carer respite. The US respondents reported that the essential resources necessary to support the diagnosis and management of dementia were lacking. The primary care of older adults may increasingly be provided by nurse practitioners in the US, and the structured NZ pathway offers a promising approach to adopt in the US. Potential strategies for implementation are detailed.

The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established ‘coping’ as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n = 18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed ‘social coping’ (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term.

Objectives: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care. Methods: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi’s framework, was used to analyze the data. Results: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: “lack of consensus about timing of Specialist Palliative Care engagement” and “high stake decisions with uncertainty about treatment outcome.” The main barrier identified by patients and family carers was “lack of preparedness when transitioning from curable to incurable disease.” There were 2 overlapping themes from both groups: “uncertainty about meeting psychological needs” and “misconceptions of palliative care.” Conclusions: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.

Purpose There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes care for people with IDD, the role and experiences of family carers, such as parents and siblings, are often neglected in this research. However, it is clear that family carers do not feel that they have sufficient knowledge about diabetes. The purpose of this commentary is to extend the content from “Diabetes and people with learning disabilities: Issues for policy, practice, and education (Maine et al., 2020)” and discuss how family carers can feel better supported when caring for someone with IDD and diabetes. Design/methodology/approach This commentary discusses specific efforts such as STOP diabetes, DESMOND-ID and OK-diabetes for people with IDD including family carers. Encouragement is given for health care providers to recommend such programmes to people with IDD and their family carers. It is also suggested that health care providers involve family carers in diabetes care planning and implementation for people with IDD. Findings It is hoped that if changes are made to current diabetes practices and more research with family carers is conducted, diabetes prevention and management for people with IDD will be more successful and family carers can feel more confident in providing support to their loved ones. Originality/value Research exploring the role of family carers in diabetes care for people with IDD and diabetes is very limited. This commentary makes recommendations to help family carers feel better supported in their role. It also provides areas for future research.

Background Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. Methods A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator. Discussion Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. Trial registration International Standard Randomised Controlled Trials Number ISRCTN11425138. Registered on 7 October 2019

Objectives: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. Methods: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). Results: RQ in the group of carers declined over 1year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers’ RQ, whereas social support was associated with more positive RQ trajectories. Conclusion: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ. Fundação para a Ciência e Tecnologia - FCT info:eu-repo/semantics/publishedVersion

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom. Methods The aim of this research is to adapt the application of the FCDS for use in different countries. Funding supported through the EU Joint Programme – Neurodegenerative Disease Research (JPND) project has supported the scaling up of the FCDS transnationally in the United Kingdom; Republic of Ireland; Netherlands; Canada; Czech Republic ; and, Italy. Launched in April 2019, this presentation will report on present activities including: a) description of the FCDS intervention; b) strategy for implementing the FCDS in care homes; c) study design employed for the evaluation of the FCDS; and d) work packages and that will be deployed to achieve intended outcomes Results Expected project outcomes of this work will include a) develop guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care. Conclusion Recent research revealed that care home structures and staff play an important role in the successful implementation and adoption of innovations such as the FCDS intervention, this is further examined in this transnational study.

Purpose We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value. Electronic supplementary material The online version of this article (10.1007/s11136-019-02186-w) contains supplementary material, which is available to authorized users.

Aim Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. Method A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. Findings Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. Conclusion This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.

peer-reviewed The full text of this article will not be available in ULIR until the embargo expires on the 29/10/2021 ABSTRACT Background Dementia can negatively impact the well-being of people living with dementia and their family carers. Research suggests that music psychosocial interventions are effective, safe alternatives to pharmacological interventions for the promotion of well-being . However, evidence is limited, and research gaps remain. This study explores how a community-based group singing intervention impacts the well-being of people with early-stage dementia and their family carers. Methods A phenomenological methodological approach was adopted. Participants engaged in a six-week group singing intervention facilitated by a music therapist in a community arts centre. Semi-structured interviews were conducted (n = 7). Results Interpretative Phenomenological Analysis revealed four superordinate themes: (1) Social Connection; (2) Happiness and Rejuvenation; (3) Reconnection with the Self; and (4) Supporting the Carer–Cared-for Relationship. Conclusions Evidence of multidimensional enhancement of well-being, absence of adverse effects, and accessibility of this musical medium support the increased provision of community-based singing groups for these populations.

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

Dementia: The Basics provides the reader with a clear and compassionate introduction to dementia and an accessible guide to dealing with different parts of the dementia journey, from pre-diagnosis and diagnosis to post-diagnostic support, increasing care needs and end of life care. Co-authored by an academic, a person living with dementia and a family carer, the book endeavours to raise awareness of dementia, challenge stereotypical and negative ideas about what it means to have dementia and champion a society where people living with dementia can be active as they wish for as long as possible. The authors present an overview of current research at each step of the dementia journey as well as including knowledge from lived experience, enhancing understanding and challenging thinking about what it might be like to live with a diagnosis or to care for a loved one. As a whole, the book emphasises the importance of prioritising the person living with dementia, as well as considering the impact of what any initiative or action might mean for them, their families and their care supporters. Offering both an accessible introduction to dementia and practical tools, this book will be ideal for health and social care professionals, students of social care, health care and nursing, people with dementia, carers and anyone wanting to understand more about the condition.

BackgroundImproving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.MethodsWe compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.ResultsStaff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.ConclusionProxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim.Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories.Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions.Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation.

The presence of pain in a person with dementia can often be missed. The diagnosis of dementia can overshadow the pain-inducing symptoms of other co-morbid conditions with distress behaviours being attributed to the behavioural and psychological symptoms of dementia. Such distress behaviours of a person with dementia often have a profound and alarming effect on family carers. This Admiral Nurse case study explores the assessment and management of pain in a person with dementia in partnership with the family carer.

Nidotherapy is a new form of psychological therapy that aims to improve mental health by a systematic and collaborative manipulation of the environment in all its forms without focusing on alleviation of symptoms. Following treatment with nidotherapy, we describe a dramatic, and continuing, improvement in a woman with comorbid severe depressive illness and borderline personality disorder. She had made repeated serious suicide attempts over the previous 25 years and had received many drug and psychological treatments without success. The nidotherapy solution enabled her to leave home and achieve greater autonomy. Prior to this, she had been demeaned and undermined in her role as a family carer, and no health professionals had appreciated previously the restrictions it had placed on her health and well-being. Nidotherapy effected a smooth and orderly transition with family approval; the reasons for this seem to lie in the emotional neutrality of nidotherapy as a purely environmental intervention. Without this approach, we judge that separation from the family would not have been possible. Copyright © 2017 John Wiley & Sons, Ltd.

BACKGROUND: The carer-delivered individual cognitive stimulation therapy (iCST) was developed to improve cognition and quality of life of people with dementia. This study aims to explore people with dementia and family carers' concepts of mental stimulation and experiences of participating in the iCST intervention. METHODS: A sub-sample of 23 dyads of people with dementia and their family carers who completed the iCST intervention took part in semi-structured in-depth interviews. Data were analysed using framework analysis. RESULTS: Three main themes emerged, 'Concepts of mental stimulation', 'Experiencing changes in everyday life as a result of participating in iCST' and 'Carer adherence to the intervention' along with 10 sub-themes. The overall experience of participating in iCST was described as having opportunities to engage in enjoyable mentally stimulating activities, motivation to stay active and bringing people with dementia and their carers 'together'. Family carers mentioned that finding time to do the sessions and their relatives being reluctant to engage in the activities could hinder their participation in the intervention. CONCLUSIONS: People with dementia and their family carers found iCST stimulating and enjoyable, but many had difficulty delivering all the sessions as planned. Family carers suggested that providing extra support by involving other people in delivering the intervention may help to improve adherence to the intervention. iCST may be a useful tool to encourage people with dementia and their carers to communicate.

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals' relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants' homes. Measures collected at baseline and post-intervention (

BackgroundThe START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.AimsTo assess the clinical effectiveness over 6 years and the impact on costs and care home admission.MethodWe conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.ResultsIn total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).ConclusionsSTART is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.Declarations of interestG.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.

Introduction: Smoking prevalence remains high among people with a mental illness, contributing to higher levels of morbidity and mortality. Health and community services are an opportune setting for the provision of smoking cessation care. Although family carers are acknowledged to play a critical role in supporting the care and assistance provided by such services to people with a mental illness, their expectations regarding the delivery of smoking cessation care have not been examined.Aims: To explore family carer expectations of smoking cessation care provision by four types of health services, to clients with a mental illness, and factors associated with expectations.Methods: A cross-sectional survey was conducted with carers of a person with a mental illness residing in New South Wales, Australia. Carers were surveyed regarding their expectations of smoking cessation care provision from four types of health services. Possible associations between carer expectation of smoking cessation care provision and socio-demographic and attitudinal variables were explored.Results: Of 144 carers, the majority of carers considered that smoking cessation care should be provided by: mental health hospitals (71.4%), community mental health services (78.0%), general practice (82.7%), and non-government organisations (56.6%). The factor most consistently related to expectation of care was a belief that smoking cessation could positively impact mental health.Conclusions: The majority of carers expected smoking cessation treatment to be provided by all services catering for people with a mental illness, reinforcing the appropriateness for such services to provide smoking cessation care for clients in an effective and systematic manner.

This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

The burden on and mental well-being of family carers for the elderly, especially those with dementia, has been well studied in high-income countries and to a lesser extent in the Arab region. Our study of Lebanese carers highlights the importance of considering the psychological well-being of the family carer, and the role of dementia and depression in increasing the burden of care. Psychosocial interventions have produced equivocal results and therefore customised and contextualised interventions need to be researched. Greater understanding of the coping mechanisms used by carers is required and an examination of the positive aspects of caring is warranted.

INTRODUCTION: Primary care visits of persons with dementia involve different types of communication, bringing together the patient, the family carer and the general practitioner (GP). A particular challenge is the necessary involvement of a third person (the carer) in patient-doctor encounters (or the patient in carer-doctor encounters, as dementia advances). These triad dynamics should be better understood, as health outcomes are expected to result from or be mediated by them.OBJECTIVE: Our aim is to explore triadic dynamics in Portuguese primary care consultations with persons with dementia, their family carers and GPs.METHODS: This is the first part of an ongoing project (Dementia in Primary Care: the Patient, the Carer and the Doctor in the Medical Encounter - Bayer Investigation Grant | NOVAsaúde Ageing 2018). Consultations with persons with dementia, their carers and GPs (purposive sampling) are audio-recorded, transcribed verbatim and thematically analysed. We report the analysis of interactions of the first six consultations, using NVIVO® software.RESULTS: The most frequent type of interaction was between GPs and carers, followed by interactions involving the whole triad. The patients who had more recent relationships with their GPs tended to participate less, irrespective of the stage of dementia. Carers were the ones most often initiating triadic interactions, and GPs the ones most often terminating them by directly addressing the patients. Doctor-carers interactions were very sparse in some consultations.DISCUSSION AND CONCLUSION: These preliminary findings suggest that doctor-patient interactions may be limited in a number of GPs’ consultations, seemingly compromising patient-centred approaches. Nevertheless, even when GPs were involved in triadic interactions they often tried to address the patient directly. We are looking forward to complete this part of the project: to our knowledge, there is practically no evidence from live-recorded primary care consultations about these triadic dynamics.

Many people living with dementia (PLWD) wish to continue living at home. The quality of home care services directly influences their ability to stay at home, their quality of life, and can promote independence for PLWD, and reduce burden for the family carer. For high-quality, effective, person-centred community-based dementia care, a knowledgeable and empathetic workforce is crucial. This article presents an up-to-date review and summary of the literature investigating dementia training programmes for community home care professionals and care workers, referred to collectively as home care workers (HCWs).We reviewed the literature between October 2016 and April 2018 on dementia training for HCWs. We found a significant lack of evidence-based, codesigned specialist dementia training programmes for HCWs that address the needs of all stakeholders in home care, and which formally measure outcomes.In order to enable PLWD to maintain living at home in the community, dementia-friendly and knowledgeable HCWs are needed. This review highlights the need for more research into the design and evaluation of evidence-based dementia specialist training programmes for community care.

In the early 1960s children were born with birth defects as a result of expectant mothers taking prescription drug thalidomide during pregnancy. This article examines the activities of the Society for the Aid of Thalidomide Children the media scrutiny of the thalidomide scandal, and the dedicated House of Commons debate of 1972 to provide new insight into the relationship between the family, normality, and disability in 1960s and 1970s Britain. The thalidomide tragedy was pivotal in the establishment of the Family Fund in 1973, which was, significantly, made available to the families of all severely congenitally-handicapped children. I argue that the thalidomide case was instrumental in raising awareness of the role of families in the care of disabled children. Thalidomide triggered debates on, research of, and interest in families with handicapped children before the role of the family carer had itself been formally acknowledged.

This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.

Background Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia. Methods Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI). Findings were synthesized using the Joanna Briggs Institute approach to qualitative synthesis by meta-aggregation. Results Seventeen papers were critically appraised, with 13 meeting the inclusion criteria. Participants were mostly of South Asians of Indian background; followed by Pakistani with a few Sri Lankans. Missing South Asian countries from the current evidence base included those from Bangladesh, Bhutan, Maldives, and Nepal. Three meta-synthesis themes emerged from the analysis: (1) a poor awareness and understanding of dementia, (2) the experience of caregiving, and (3) the attitudes toward dementia care provision. Conclusions A consistent message from this qualitative synthesis was the limited knowledge and understanding of dementia amongst the South Asians. Whilst symptoms of dementia such as ‘memory loss’ were believed to be a part of a normal ageing process, some South Asian carers viewed dementia as demons or God’s punishments. Most studies reported that many South Asians were explicit in associating stigmas with dementia.

Background : The majority of people with dementia living in the community receive care from family members or other informal carers. Each family carer experiences caregiving differently, all family carers have varying levels of personal resilience when acting in the caregiving role. Defined as a set of personal qualities, resources and factors which allow an individual to maintain normal or enhanced functioning during times of adversity (1), resilience contributes to the carer’s well-being and can influence the quality of care provided to the person with dementia. The aim of this study was to investigate the concepts and interventions related to resilience in dementia caregivers and explore models of resilience applicable to dementia caregiving. Methods : A systematic literature review was conducted to explore resilience, as it applies to and impacts on caregiving. Peer-reviewed articles and grey literature published from 2006-2016 were included in the systematic search criteria, and searched using a range of scholarly databases. Two independent reviewers pre-screened the search results and conducted formal assessments and quality appraisals of the retrieved articles. Results : A total of 13,863 studies were identified from the initial search and, following screening, 89 studies were included in the systematic review exploration of resilience. Based on narrative synthesis of the literature, the study reports a model of resilience for dementia caregivers which focuses on social and cultural factors, aspects of the caregiver-care recipient relationship and the caregiver’s psychological resources. Conclusions : While many studies focus on the area of caregiving, very few examine resilience as an independent construct. The findings build a model of resilience, which can facilitate the design and development of interventions aimed at enhancing resilience in family carers of people with dementia. Strengthening the resilience of families to take care of their loved ones is highly relevant for an integrated approach to caring for people with dementia. This research will help health and social care professionals to enable family caregivers to continue to provide care and facilitate people with dementia to remain in their homes.7 References : 1. Windle G. What is resilience? A review and concept analysis. Reviews in Clinical Gerontology. 2011 May 1;21(02):152-69.

Distress is commonly experienced by those caring for someone with dementia, and can occur whether the carer is living with a person with dementia, or supporting a person with dementia who lives alone to maintain their independence. It is essential for health and social care professionals to support family carers to balance their needs with those of the person they care for. However, this might be challenging because many influencing factors can affect these needs, and identifying the needs of the family carer and balancing them with the needs of the person with dementia is often complex. This article uses a case study to explore the role of one Admiral Nurse (KG) in supporting the main family carer of a person with dementia, and the model of reflection used by the Admiral Nurse to undertake critical thinking and analysis in relation to their role.

Aim To describe family members' experiences of attending to an old person with diabetes receiving home care services, including their interaction with the formal caregivers. Methods and results The study has a qualitative descriptive design. From May to August 2015, eight family members were interviewed. Interviews were analysed using qualitative content analysis. To describe family members' experiences, the following four themes were identified: Security through patients' self-management skills and diabetes knowledge; Perceived burden due to the old persons' deteriorated health; Security through competent home care services; and Doubt due to personnel's inadequate approach and interaction. Conclusion It is important for personnel in home care services to consider patients' self-management skills and the family members' diabetes knowledge as key aspects in order to limit experiences of burden when the older person with diabetes has deteriorating health. The findings underscore that interaction with home care personnel skilled in managing diabetes helps family members feel secure.

Niedrigschwellige Betreuungsangebote sind eine Möglichkeit, durch eine stundenweise Betreuung von Personen mit Demenz (PmD), pflegende Angehörige zu entlasten. Ziel der Studie ist es, die Aspekte von Niedrigschwelligkeit (Zugang, Flexibilität, Erreichbarkeit, Kostengünstigkeit) sowie die inhaltlichen und organisatorischen Aspekte niedrigschwelliger Angebote aus Sicht der pflegenden Angehörigen zu untersuchen. In einer explorativen Querschnittstudie wurde die Einschätzung von Angehörigen von PmD, welche ein niedrigschwelliges Betreuungsangebot in Anspruch nehmen, zu diesen Angeboten mittels standardisierter Fragebögen in zwei Regionen Nordrhein-Westfalens erhoben und deskriptiv ausgewertet. Die Ergebnisse zeigen, dass für die 53 befragten Angehörigen die inhaltliche Gestaltung der Betreuung v. a. mit Blick auf das Wohlbefinden der PmD von Bedeutung ist, während organisatorische Aspekte sowie die Niedrigschwelligkeit der Angebote als weniger wichtig empfunden werden. Die subjektiv eingeschätzte Belastung der pflegenden Angehörigen spielt dabei keine Rolle. Für die Entscheidung der pflegenden Angehörigen zur Inanspruchnahme scheint von Bedeutung zu sein, dass der Betreuungsschwerpunkt auf den Bedürfnissen der Menschen mit Demenz liegt, und dieser transparent dargestellt wird.

People with early-onset dementia (EOD) and their family carers remain an overlooked population within the policy and practice priorities of community health care. No standard provision of care or support currently exists for those with EOD and the family carer. Yet family members provide the majority of the full-time care required for this progressive, irreversible illness. The aim of this research was to explore the impact of care-giving on family members caring for a relative with EOD. The care-giving experiences identified in this study emphasise the need for improvement in the provision of community and specialised services for people with EOD and family carers. The key themes of this qualitative study were diagnostic problems, impact of care-giving, relationship change and lack of resources. These findings provide key directives for improving community practice, services and support for people with EOD and their family carers.

Background People with a mental illness experience an increased morbidity and mortality compared to the general population; a disparity largely due to increased chronic disease burden. Family carers are implicated as key stakeholders in mental health services, and policies outline the need to involve carers at every level of service planning and delivery; however, carer attitudes towards chronic disease risk behaviour care provision for people with a mental illness within health and community services has not previously been explored. Methods Family carers of people with a mental illness (N = 144), residing in New South Wales, Australia, completed a self-administered questionnaire regarding their expectations of the provision of chronic disease risk behaviour care (for nutrition, physical activity, alcohol, and smoking cessation) by four health and community services: mental health hospitals; community mental health services; general practice; and non-government organisations. Results Of participating carers, the majority expected each of the four services to provide care for: nutrition (56.3% - 81.1%); physical activity (65.4% - 85.9%); harmful alcohol consumption (63.0% - 83.1%); and smoking cessation (56.6% - 82.7%). Further, carers also perceived that having adequate nutrition (84.6%), engaging in adequate physical activity (91.6%), decreasing alcohol consumption (74.1%), and quitting smoking (61.9%) would positively impact mental health. Conclusions Participating carers perceived that improving chronic disease risk behaviours would positively impact mental health; and the majority expected the four health and community services to provide care for chronic disease risk behaviours; reinforcing the appropriateness and need for services to provide such care to all clients with a mental illness. Key messages: - Carers perceived improving risk behaviours would result in a positive impact on mental health for people with a mental illness; suggesting a potential for carers to support behaviour change - Carers expect health and community services to provide chronic disease risk behaviour care for clients with a mental illness; reinforcing the need for services to provide such care for all clients

The experience of stigma and discrimination against people with mental illness is by no means confined to them but extends to their families who take responsibility for their care. That responsibility is growing, yet the needs of family carers and the burdens of care they assume are neither sufficiently recognised nor understood and therefore not adequately provided for.

Background: Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers’ preferences for future care and the support systems required to make such future plans. Methods: The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60–94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Findings: Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people’s residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future. Conclusion: Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.

The spiritual aspect of dementia care needs more attention. Caring for a person with dementia inevitably puts at times unreasonable demands upon the family carer and arouses many negative emotions, especially resentment. In this article we discuss how the Christian concept of the person is based upon relationship and that family relationships may need to be sustained from within the larger community as dementia increases in severity. We present examples of recent individual and group focused initiatives that we have piloted in Hampshire, UK, which have aimed to help dementia caregivers in transcending their feelings of hurt.

Background: Motor neurone disease (MND) results in systemic disabilities due to progressive muscle weakness. Patients and families affected by the illness will require input from a wide range of health and social care professionals. Evidence for the efficacy of a multidisciplinary team approach to care in MND is limited, with a Cochrane review calling for ‘real life’ research on the topic. The views of patients and family carers have not been dominant in published studies. To ensure that services are meeting their needs it was important to obtain the perspectives of those living with the illness. Aim: To obtain the views of people with MND and family carers regarding multidisciplinary team (MDT) working. Method: A qualitative study involving narrative style interviews was conducted in Northwest England. People with MND (24), family carers (18) and former carers (10) were recruited through an MND Care and Research Centre. Results: A number of themes emerged from a thematic analysis: having a single point of access; specialist knowledge and skills; saving time and energy; regular follow up; valued members of the MDT; working together as a team. Conclusion: The findings greatly enhance our understanding of the effect of MDT working on people with MND and their family carers

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

People with dementia who feel included in decisions about their care show higher well‐being and positive adjustment to accepting care than those who feel their family make decisions for them (Bourgeois, 1991). Most carers want to involve the person with dementia in decision‐making and care arrangements, but many struggle because of the communication and cognitive problems associated with the condition. Research examined whether the Talking Mats framework could help people with dementia and their family carers feel more involved in decisions about managing their daily living. Eighteen couples (person with dementia and family carer) were asked to discuss how the person with dementia was managing their daily living activities using the Talking Mats framework (Condition A), and when having a typical conversation (Condition B). Each couple then completed a brief questionnaire separately to measure how involved they felt in both types of discussion. Both the person with dementia and their family carer felt more involved in discussions about managing daily living when using the Talking Mats framework than when having a typical conversation. Qualitative analysis of all discussions also offered insight into what people with dementia who are still living at home are managing in relation to their daily living. The study will contribute in a practical way to the current debate on how to involve people with dementia meaningfully in service planning. This will have implications for the organisation, delivery, and improvement of services to people with dementia.

IntroductionWorldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge.Methods and analysisTo theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes.DisseminationThe findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences.PROSPERO registration numberCRD42016041727.

SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

Many people with dementia have other complex health needs, including comorbidity and frailty. Most models of care focus on single diseases and do not take into account the needs of those with comorbidities and dementia. Integration, continuity of care and personalisation are particularly important for this vulnerable group. It is also important to recognise potential barriers to accessing care so that these can be addressed. Issues around providing health care for people with dementia and complex health needs are considered in this article, including management and organisation of care, access to care, models of care, role of the family carer, and prevention of dementia, frailty and long-term conditions.

Purpose: Clinical practice with people with intellectual disability relies heavily upon caregiver report. Crucially, the carer's perspective may depend upon his or her relationship to the patient. We investigated similarities and differences within and between family and paid carers in their reports on the Glasgow Epilepsy Outcome Scale (GEOS), an instrument that quantifies concerns about epilepsy in this population [Epilepsia 42 (2001) 1043]. Methods: GEOS forms were available on 186 patients (108 males; mean age 39 years) across 384 primary respondents (141 staff, 83 family, 160 clinicians) and independently completed secondary respondents (67 staff, 36 family). Data were analysed to consider levels of concern as rated bv staff carers, family members and clinicians, and also to consider inter-rater agreement on the concerns raised. Results: There were significant differences in the magnitude of concern on each sub-scale [concerns about seizures, treatment, caring and social impact; range of F (2,171)=9.5–64.7; all P Post hoc testing revealed that family members scored all sub-scales more highly than staff carers or clinicians, and that staff carers scored more highly than clinicians on all but one sub-scale. Inter-rater agreement between family members was considerably higher (range of r =0.69–0.91) than between staff carers ( r =0.30–0.47) across the GEOS sub-scales. Association between staff and family ratings was also modest ( r ≤0.39). Conclusions: It is preferable for the same staff member to complete each administration of the GEOS because of inter-staff variability in reporting of concerns. Families provide a consistent, but more extreme, picture and clinicians generally underestimate the concerns of direct caregivers. However, content of concerns varies relatively little across respondents.