No description available.

This thesis explores the experience of dementia as recounted by family carers and people with the early experience of dementia. Between October, 1992 and May, 1996 sixty four semi-structured interviews were conducted with family carers of people with dementia using a modified grounded theory approach. Constant comparative analysis of the data led to the emergence of a five stage integrated scheme to explain their experiences, namely: Recognising the Need (1); Taking it On (2); Working Through It (3); Reaching the End (4); and A New Beginning (5), with critical junctures attached to each stage which either locked the carer in, or moved the carer through, the model. A second phase of data collection comprised eleven interviews with ten people with the early experience of dementia and their family carers. Analysis of these data resulted in the emergence of the stage of Keeping it Hidden with its supporting strategies: Closing Down; Regrouping; and Covering your Tracks which help to explain how people with early dementia manage their changing cognitive abilities. Following a theoretical integration of the two phases of data collection the process of 'working' emerged in three forms, i.e. Working Apart; Working Together; and Working Alone to explain movement between the above two models. Transcending the data, the study also generated the linking scheme of Maintaining Involvement to help explain the dynamics of dementia. The 'fit and grab' of this linking scheme was subjected to preliminary empirical scrutiny via a third series of interviews with six carers of people with dementia. It is suggested that the grounded theory emerging from this study helps to explain the shared experience of dementia, while also having implications for policy and practice which are briefly explored in the concluding chapter, together with some of the methodological implications and limitations of the study.

Dementia is a progressively debilitating disorder often of insidious onset. When making the initial assessment or reviewing ongoing care of patients living at home, healthcare professionals rely on verbal information provided by person with dementia and their informal carers. Diaries have been used in very few instances to assist with gathering information about persons with dementia in the community. The review of literature found that there are very few studies that used carers' diaries in the context of dementia care and its effects on carers and patients, and there was no previous study that had used carer diaries in the assessment of dementia patients' problems in everyday life. It was also noted that no previous study has assessed the validity of these retrospective self-reporting by patients with dementia and their carers. If these self-reports are indeed unreliable and provide averaged impressions rather than actual fluctuations of frequency and magnitude of symptoms, then caregivers' diaries of these symptoms/problems can provide important and valuable additional information to clinicians. The main aim of this study was to capture a variety of problems (cognitive, emotional, behavioural, etc.) in people with dementia, using diaries kept by carers for a week and comparing with carers' oral recollection of problems in the same week. The second aim was to examine the potential therapeutic impact that keeping a diary had on carers' quality of life as rated by the EuroQol, emotional wellbeing as rated by the Hospital Anxiety and Depression scale, as well as its impact on behavioural and psychological problems of dementia patients measured by the Neuro-Psychiatry Inventory. Method Carers were randomly allocated into two groups, the intervention and control groups. In the intervention group, carers received a diary and instructions on how to complete it for 7 days. A number of assessment tools and ratings scales were completed on Day 1 and Day 8. The control group carried out the same tasks except completing a diary. The scales used were questionnaires such as the Clinical Dementia Rating Scale and the Neuro-Psychiatry Inventory for carers to evaluate the problems in the person they cared for. The EuroQol and Hospital Anxiety and Depression scale were completed by carers to assess their own quality of life and screen for anxiety and depression in carers. The carers in the diary group were asked to complete a semi-structured questionnaire on their views about keeping a diary on Day 8 when they returned the diary to the researchers. On Day 28, carers in each group completed the Neuropsychiatry Inventory, EuroQol, Hospital Anxiety and Depression Scale and a semi-structured questionnaire asking about their experiences taking part in the study. Results There was a 1 year period of recruitment from 1 May 2014 to 30 April 2015. A total of 97 couples were identified and approached to take part in the study, with 84 couples agreeing and giving written informed consent to take part. Out of these, 78 couples went on to complete the study and 6 couples withdrew. The problems reported in narratives and diary entries were content analysed by two raters independently and classed into 5 categories: cognitive, behavioural, emotional, psychiatric and other. In retrospective narrative accounts, significantly more cognitive problems were reported than any of the other four problems. In contrast, in diaries both cognitive and behavioural problems were reported significantly more often than the other problems. In addition, in the diary condition, the mean number of problems identified in the carers' diaries was significantly higher than in the carers' narrative accounts on Day 1 and Day 8. Furthermore, the number of problems recorded in diaries did not correlate with retrospective problems reported on Day 1 but correlated with the number of narrative problems on Day 8. In terms of therapeutic benefits of diary keeping, there were no significant differences between diary and control groups' mean scores in the Neuro Psychiatry Inventory, EuroQol and Hospital Anxiety and Depression Scale on Day 8. The mean Neuro-Psychiatry Inventory and Carer Distress scores were significantly lower at the end of the study for both the diary and control groups. Discussion The findings revealed that the carers' diaries identified a greater frequency of problems compared to retrospective information gathered from carers, with cognitive and behaviour problems being the two most common problems. Despite identifying more problems, the use of the carers' diaries in dementia did not appear to make a difference in carers in terms of carer distress, carers' health related quality of life or psychiatric morbidity amongst carers. This may be on account of the short period of one week that the diaries were used in this study. The positive correlation of problems identified in the narratives in diary group at Day 8 with diary entries in contrast to narratives at Day 1 where there were no correlation with diary entries suggest diary entries can enhance recollection of problems in narratives of carers who keep diaries. Conclusions Carers' diaries may be a useful tool in assessments of dementia patients as this study indicates that they may provide more information than obtained from a retrospective account of problems in persons with dementia. More research using diaries in dementia covering longer period than a week may be required to ascertain other benefits such as improving carers' well-being and problems in persons with dementia.

This study aims to develop an understanding of the lived experience of family carers of people with PIMD and dysphagia, in relation to mealtimes and food. Policy in recent years has begun to address the inequalities faced by people with learning disabilities and it is striving to improve their lives and the services offered to them. People with profound intellectual and multiple disabilities (PIMD) often have additional eating and drinking difficulties (dysphagia). People with dysphagia require ongoing support and guidance, to maximize their health, specifically their nutrition and hydration. In order to ensure that this support is appropriate, useful and sensitive to the needs of individuals and their families, it is important to try and view mealtimes through the eyes of these individuals and their families. The aims of this study emerged from observations made during my clinical work as a Speech & Language Therapist (SLT) and from engaging in discussion with family carers. In particular it has become increasingly clear from clinical practice that family carers often have different points of view about their son or daughter with profound intellectual and multiple disabilities, than those of professionals. These different points of view are often not clearly articulated by carers or professionals, and clinical interventions may become marked with conflict. This study is sited within a mental health and learning disability NHS trust in the north east of England. It utilises a phenomenological methodology and employs mixed methods to obtain data. Data collection took place between June 2013 and August 2014. Medical descriptions do not capture how it feels to live with impairment and resulting disability. Only when we examine this and allow individuals to tell their stories, as experts in their experiences, can we understand and offer support accordingly and ensure more functional and beneficial interactions and interventions. Findings are presented around four themes – the meaning of food and mealtimes, relationships, roles within the family and challenges. Findings are discussed in relation to the existing literature and recommendations are made for practice and for future research. During this study the adult child is mainly referred to as the ‘child’. For clarity, this is not in any way meant to convey the individual’s presentation as having PIMD as akin to being a child. The term is used to represent the relationship between the parents and the child. Despite the fact that the individuals are adults, they are still the children of the parents, and the relationship is a parent-son/daughter relationship. For brevity the term ‘child’ is used in preference to ‘adult child’. The use of the term has been agreed with the parents participating in the study. All names are assumed and have been chosen by the participants. In the course of this thesis the direct giving of food to the individuals with disabilities is termed ‘feeding’. I acknowledge this term may be associated with potentially negative connotations. The term ‘feeding’ has been used because it is the term used widely in the literature, because it was used by the family carers in their narratives and because there is no other suitable substitute which adequately describes the direct provision of food from one person in to the mouth of another.

Huntingtons sjukdom (HS) är en ovanligt förekommande sjukdom med komplexa sjukdomsförlopp. Att vara anhörigvårdare till en individ som drabbats av HS kan därför innebära en speciellt utmanande livssituation med många svårigheter liknande andra anhörigvårdare med sjukdomstillstånd som parkinsons sjukdom och alzheimers sjukdom. Det är därför viktigt för sjuksköterskan att att få en förståelse för vad anhörigvårdare går igenom vid vårdandet av en individ med HS för att kunna förstå och ge adekvat stöd. Syftet: med litteraturstudien är att beskriva anhörigas perspektiv av att vara vårdare för en anhörig som är drabbad av huntingtons sjukdom. Metod: för att analysera datan så användes en integrerad analysmetod enligt Whittemore & Knafl (2005). 12 inkluderades (2 kvantitativa, 10 kvalitativa) som samlades från två databaser. Resultat: analysen resulterade i fyra kategorier: Existera i rollen anhörigvårdare, hantera att vara anhörigvårdare, undvikande av sjukdomen, kämpa för att få stöd och förståelse. Resultatet påvisade bland annat hur anhörigvårdares liv förändras samt hur det kan se ut när anhörigvårdare hanterar den nya situationen. Det är viktigt för sjukvården att ha insikt för vad anhörigvårdare går igenom för att kunna ge ett adekvat stöd och bemötande.

Yes / Population ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health1 and resulting in social isolation and financial hardship.2 When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home.3 Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing”. / none

Yes / Living well with dementia is promoted nationally and internationally (Department of Health, 2009: Global Action Against Dementia, 2013). UK health policy recommends post-diagnostic support to enable people to live well in the community for as long as possible (Department of Health, 2015; NHS England, 2017; Scottish Government, 2017; Welsh Government, 2017). This is important given that a cure for dementia is not imminent. A growing evidence base demonstrates that psychosocial interventions can benefit people with mild to moderate dementia, by improving cognition, performance in valued activities or daily living skills, maintaining quality of life or carer coping. (Clare et al., 2011;2017; Graff et al.,2006,2007; Streater et al.,2016). Occupational therapists offer interventions to people living with mild to moderate dementia and family carers (Swinson et al.,2016;Streater et al.,2016;Yuill and Hollis,2011). The National Institute for Clinical Excellence and Social Care Institute for Excellence (2006) recommended occupational therapists provide skills training for activities of daily living. Also, the Memory Services National Accreditation Programme recommends people with dementia have access to occupational therapy and other psychosocial interventions such as reminiscence, life story work or cognitive stimulation therapy, for the cognitive, emotional, occupational and functional aspects of dementia (Hodge et al.,2016). Such interventions can be delivered by occupational therapists. The focus on the benefits of non-pharmacological interventions provides occupational therapists with an opportunity, to deliver services that improve lives and the experience of dementia (Collier and Pool, 2016). Understanding what may influence uptake of such interventions is important if people with dementia and their carers are to benefit from what occupational therapists can offer. Yet what supports the uptake of such interventions, specifically by people with mild to moderate dementia and their family carers, living in the community is poorly understood and limited research about this topic exists. ‘Uptake’, in this paper, is defined as initial acceptance of an offer, of intervention, support or services, rather than continued engagement or adherence to an intervention over time. / National Institute for Health Research’s Programme Grants for Applied Research Programme (RP-PG 0610-10108)

This study aims to explore Scottish and Korean carers‘ attitudes towards the diagnosis of dementia in their relative, family care, community care and to residential care in Scotland and Korea respectively, also under examination was the origin of different carers‘ attitudes between Scotland and Korea. The dominant argument between previous Western and Eastern comparative studies on attitudes, has been that culture made the difference. In other words, the cultural factor was recognised as a main determinant of attitudes towards a diagnosis of dementia, towards social services at home and residential care in Asian societies, including Korea. This thesis starts with the question: Does culture really explain the phenomenon of Asian people‘s attitudes towards dementia? Indeed the tradition of filial piety has been changing and now seems to be rather weak in modern Asian society. In particular, contemporary Korea is modernised and westernised, as a result, many older people live apart from their adult children and their nuclear families. This study asserts that Confucianism is a much less significant factor than differences in social policy. In other words, this thesis focuses not on Confucianism, but on the impact of institutions on carers‘ attitudes towards dementia. Finally, this thesis explores this argument through the following research question: What are the origins of different carers‘ attitudes between Scotland and Korea? In order to develop this argument, this thesis has carried out interviews with 14 Scottish carers and 28 Korean carers; and adopted a qualitative approach that would yield a rich exploration and deeper understanding of the different attitudes between carers in Scotland and Korea. Based on this data, this thesis examines carers‘ attitudes towards the diagnosis of dementia (chapter 3), family care (chapter 4), community care (chapter 5), and residential care (chapter 6). Each chapter analyses similarities and differences in attitudes in Scotland and Korea from the point of view of culture or the social welfare system. To conclude, these findings explain that the origin of carers‘ attitudes in this study is based on social policy rather than culture. In other words, the Korean carers‘ attitudes and behaviours towards diagnosis and long-term care services are rooted in the residual welfare system rather than Confucianism. Likewise, this study found that Confucianism has a less significant influence than social policy on carers‘ attitudes towards the utilisation of health care, community care and residential care. Unlike previous studies on East Asia, that argue for a cultural explanation, this study of Korean carers demonstrates that the residual welfare system is more persuasive than the cultural approach derived from Confucianism . This study contributes to the comparative study of Scotland and Korea as well as being a qualitative study in Korea. In addition, it will provide a new perspective on attitudes towards studies on East Asia. Moreover, the study will suggest political implications through the exploration of the carers‘ attitudes towards dementia diagnosis, social services at home and residential care. It also can provide lessons on dementia and dementia care from different experiences in Scotland and Korea.

Sammanfattning   Bakgrund: Palliativ vård har utvecklats för att lindra lidande och främja livskvalitet i livets slutskede. Den palliativa vården delas in i främst två faser; tidig och sen fas. Symtomlindring är en av hörnstenarna i palliativ vård och ofta utförs palliativ vård i hemmen av närstående. Detta kan innebära en påfrestning för de närstående då familjestrukturer kan komma att förändras. Syfte: Att beskriva upplevelsen av att vara närståendevårdare till en person som vårdas palliativt i hemmet. Metod: En kvalitativ litteraturöversikt där teorin om KASAM har använts. Elva artiklar har analyserats utifrån Fribergs femstegsmodell. Resultat: Närståendevårdarna upplevde att de inte fick tillräckligt med information eller kunskap från sjukvården samt att kommunikationen med denna var bristfällig. De upplevde att detta påverkade deras känsla av kontroll i situationen och att deras delaktighet i omvårdnaden av den sjuke individen inte togs på allvar. De saknade ofta stöd från sjukvården men tog sig ändå an uppgiften som vårdare och uttryckte tacksamhet över att ha kunnat finnas där för sin sjuke familjemedlem. Slutsatser: Närståendevårdarna behöver ett bättre stöd från sjukvårdens sida i form av information, fysiskt och psykiskt stöd och bättre kunskap. Sjuksköterskan kommer att spela en stor roll i mötet med dessa personer och det är viktigt att inse vilken stor roll närståendevårdarna spelar i vårdandet av den sjuke individen. / Summary Being a family carer at the end of life – a review focused on palliative home care Background: Palliative care was developed to ease suffering and improve quality of life at the end of life. The palliative care is divided into two phases; early palliative care and end-of-life care. The easing of symptoms is one of the palliative cornerstones and the palliative care is often conducted at home by family carers. This can become a burden for the family carers when family structures are changing. Aim: To describe the experience of being a family carer to a person within palliative home care. Method: A qualitative literature review was conducted, where the theory of KASAM was used. Eleven articles were reviewed and analysed using Friberg’s five step model. Results: The family carers felt like they didn’t receive enough information or knowledge from the health care and felt like the communication between them was lacking. The control they experienced in the situation was negatively affected by this and they felt like their involvement in the care of the sick individual was not taken seriously. They were often missing support from the health care but they still adapted the task of being the family carer and expressed gratitude of being able to take care of their sick family member. Conclusion: Family carers need better support from the health care in the shape of information, physical and psychological support and better knowledge. The role of the nurse is going to be important in meeting these individuals and it’s important to realise the potential these family carers have in nursing the sick person.

Eftersom andelen äldre som är i behov av vård- och omsorg ökar i samhället kommer även anhörigvårdare att öka och i många fall kan det innebära en tung börda, isolering och ensamhet. ACTION-tjänsten är en form av IKT-baserat anhörigstöd som kan vara ett komplement till andra former av stöd till anhöriga. Med IKT menas Informations och Kommunikations Teknologi. Tidigare forskning om vård- och omsorgspersonalens upplevelser och erfarenheter av att arbeta med ACTION-tjänsten är knapphändig. Syftet med studien var att beskriva vård- och omsorgspersonalens erfarenheter av att stödja äldre och anhöriga som vårdar sina äldre närstående i hemmet, via ACTION-tjänsten. Tio kvalitativa intervjuer genomfördes med vård- och omsorgspersonal som arbetar med ACTION-tjänsten. Intervjuerna analyserades utifrån kvalitativ innehållsanalys. Studien visar att ACTION-personalen upplever det positivt att stödja anhörigvårdare och deras närstående via ACTION-tjänsten. ACTION-personalen tycker att ACTION-programmen är ett bra hjälpmedel för att ge de anhöriga kunskaper och självförtroende och på så vis kunna stärkas i sin roll som anhörigvårdare. Genom kontakt via bildtelefoni skapas en djupare relation mellan personal och anhörigvårdare eftersom att de har möjlighet att pratas vid oftare och de ser varandra vid samtalet. Genom detta upplever personalen att de på ett bra sätt kan ge den individuella vård och stöd som anhörigvårdarna är i behov av. Personalen upplever det också positivt att kunna hjälpa anhörigvårdare att bryta sin isolering genom att skapa sociala kontaktnät mellan ACTION-användarna. I studien framkommer det också att flera av personalen saknar stöd och handledning från kommunledningen. I diskussionen diskuteras resultatens huvudfynd med stöd av tidigare forskning. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska