Few research studies have examined the panoramic landscape of family caregivers from dementia diagnosis to the final bereavement of the person with dementia for whom they are caring. The route and pathways of care undertaken during a caregiver's journey will be individual to each person, yet invariably there will be some similarities as to how they anticipate, approach and mange this journey. From the caregiver's perspective, caring for someone with dementia is related to more than the cognitive loss experienced by their family member, there are many losses involved, This research study aims to explore the complex emotional experiences of thirty caregivers in relation to sense of self. change, grief, loss and bereavement, to elucidate a deeper understanding of the lived experience, the perceived and understood reality of the experiential journey of caregivers. To explore the experiences of caregiving, this research study uses a hermeneutic phenomenological approach and draws on an adaptation of the theoretical framework of anticipatory grief and loss by Fulton and Fulton (1971) and Fulton and Gottesman (1980). The study uses a convenience sample and semi structured interview format and involves two non-comparative participant groups of family caregivers living in urban and rural communities within the North East of England. Group one comprises of twenty bereaved participants, nineteen of whom are spousal caregivers and one adult-caregiving daughter, who were interviewed once to explicated a retrospective perspective of the caring experience. Group two comprises of ten participants, nine spousal caregivers and one adult-caregiving daughter, who are currently caring for a family member living with an advanced stage experience of dementia. Group two participants were interviewed on three occasions across an eighteen-month time period to explore the retrospective and prospective experience of their caregiving role. The analysis of data reveals expressions of change, grief and loss within a complex and tri-dimensional landscape. Within this landscape, participants highlight defined periods of their journey, particularly with regard to their experience of a protracted middle period, which they referred to as being "the long road". However, intersecting with this layered landscape, the analysis of data also reveals a key aspect of caregiving - the emergence of a conceptual framework involving three interconnected yet fluctuating schemas of self experienced by participants. the first scheme, the individual 'me-self'. related to the participant's perception of their core self and envisaged sense of self. the second schema, the 'relationship-self', illustrates participant's physical and psychological experiences and bonded connection between themselves and the cared-for spousal partner or parent, as well as other family members and care workers. The third schema, the 'caregiving-self', is associated with the acquisition and undertaking of their role of familial caregiver. The findings of this study highlight the 'lived-world' experience of family caregivers as being a journey which subjects them to a cyclical maelstrom of emotion and fluctuating perception of their schemas of self.

Background: Dementia, which affects an estimated 35 million individuals worldwide, is now recognised as a growing health and economic problem. With insufficient levels of health and welfare services in many nations, there exists a reliance on family caregivers to provide care for individuals with dementia (IWDs). However, the potential negative psychological and physical consequences of the caregiving role cannot be ignored. A growing literature base has improved the theoretical understanding of mental health difficulties (e.g. depression, burden) in caregivers. However, significant gaps in the research remain. These include understanding outcomes such as caregiver anxiety and examining the role of potentially crucial variables, such as levels of suffering and empathy. Objectives: An empirical study was conducted in order to add to the literature regarding depression and anxiety in spousal caregivers of IWDs. This research conducted exploratory analyses of the relationships between the suffering of IWDs, IWDs' depression and anxiety, caregivers' levels of empathy, caregiver satisfaction and caregiver anxiety and depression. Caregivers' anxiety and depression is considered in the context of research on co-morbidity. In addition, the levels of discrepancy between ratings of suffering, whereby caregivers frequently report IWDs to be suffering more than IWDs self-report, were also examined. A systematic review was conducted in order to evaluate the effectiveness of psychosocial interventions for anxiety in informal caregivers of IWDs. Method: For the empirical study, a cross-sectional survey methodology was employed where dyads of caregivers and IWDs completed questionnaires during face-to-face interviews. Primary variables examined were the suffering of IWDs, IWDs' levels of depression and anxiety, and caregivers' levels of empathy, satisfaction, depression and anxiety. The suffering of IWDs was rated both by the IWDs (self-reported suffering) and the caregivers (perceived suffering). Descriptive statistics and exploratory correlational analyses were used to address a number of exploratory research questions regarding the relationships between the investigated variables. For the systematic review, five scientific databases were searched for relevant randomised controlled trials (RCT). Study quality was assessed according to standardised, recommended criteria and a qualitative synthesis of the evidence, including effect sizes, is described. Results Results from the empirical study suggest high levels of clinical anxiety in the caregiver population. In the current sample, there was a high prevalence rate of anxiety (52.5%) and a lower rate of depression (15.0%). However, there were no statistically significant correlates for caregiver anxiety and depression found. Findings are discussed in the context of previous research, the demographics of the current sample and difficulties with recruitment. For the systematic review, twenty studies with substantially different methodological quality were included. Anxiety was rarely identified as the primary outcome measure. However, the evidence suggests that Cognitive Behavioural skills training and psycho-educational interventions can be effective in treating caregiver anxiety. Some preliminary evidence for interventions underpinned by Mindfulness-based strategies was also found. Conclusions: The empirical study found that a large proportion of Scottish spousal caregivers experience clinical levels of anxiety. This suggests that caregiver anxiety must be a key priority for both clinicians and researchers alike. In addition, further research examining these understudied variables and using dyadic methods remains crucial to increasing understanding into caregivers' outcomes. The systematic review demonstrated that research regarding interventions for anxiety in caregivers is growing and there is now a greater emphasis on the underlying theoretical models of delivered interventions. There is also growing evidence that interventions with clear theoretical basis may be more likely to be effective. However, both the empirical study and the systematic review highlight further questions that remain to be addressed in the literature. Further research continues to be necessary in this area to ensure that services are appropriately meeting the needs of both caregivers and IWDs.

Acute rehabilitation hospitals assist brain injury patients and families who face a life- changing event to achieve greater independence and quality of life. During the acute rehabilitation phase of recovery, care is focused on the patient; however, there is a nationwide movement to implement patient- and family-centered care because caregivers experience grief and uncertainty about how to care for their loved one during hospitalization and upon discharge. The purpose of this staff education project was to educate rehabilitation staff on how to identify and to meet the needs of family members of brain injury patients in an acute rehabilitation center in the western United States. The patient- and family-centered care theoretical framework and Knowles's theory of adult learning supported the development and implementation of the educational program. The project site stakeholders identified educational opportunities to assist staff to meet caregiver needs and improve outcomes. Thirty-two staff including registered nurses, licensed vocational nurses, patient care technicians, and nurse managers, received education for the support of caregivers for patients with brain injuries. The program was evaluated using a 5-point Likert type questionnaire. After receiving the education all participants agreed or strongly agreed that content increased their knowledge, skills, and confidence in caring for family caregivers of brain injury patients. Implications of this project for social change include the potential to improve patient outcomes through caregiver knowledge and skills to provide care to patients with brain injury.

With aging of the baby boomer population, older adults living longer, and no known cure for dementia, the prevalence of dementia in older adults will inevitably rise. Dementia is a terminal illness, although it may not be recognized as such. Family caregivers to persons with dementia provide invaluable care, often at the expense of their own health and well-being. Over the past two decades there has been an abundance of research that examines the various and complex aspects of caring for a relative with dementia. However, there is a paucity of research that has been conducted on the experiences of family caregivers providing end-of-life care. The conceptual framework that guides this research is based on the work of Martin Heidegger. A thorough search of the literature reveals that the main themes of this end-of-life experience studied to date are the experience of grief and loss, and the manifestations of depression in family caregivers. A number of gaps in the literature remain that limit our understanding of the end-of-life care experience. The purpose of the present study is to begin to address this neglected area of research. As a result, the research question is: What is the meaning of the lived experience of family caregivers who provided end-of-life care for a relative who died with advanced dementia? This question was addressed using an interpretive phenomenology based on the work of Munhall. The study utilized a purposeful sample of family caregivers (n = 11) whose relative with dementia died in the last year. Two to three in-person, unstructured interviews were completed with each participant as a way to glean an understanding of their experiences and offer opportunities for the participant to verify their end-of-life caregiving story. A total of 27 interviews were recorded and transcribed verbatim. Transcripts were hermeneutically analyzed in order to create individual narratives for each participant, reveal the essence of this experience, discuss the influence of the life worlds, consider the taken for granted, and generate an overall study narrative. These findings reveal the complex nature of the end-of-life caregiving experience with dementia.

No description available.

Risken att drabbas av demens ökar med stigande ålder. Antalet demenssjuka kommer att öka beroende på att befolkningen blir allt äldre. I och med detta ökar även antalet anhöriga som har en viktig roll i vården av den sjuke. I Sverige finns det ca 1,3 miljoner personer som ger stöd eller vård till närstående regelbundet. Demens är en diagnos för en rad symtom, med bland annat sviktande minne och nedsättning av andra kognitiva funktioner, vilket i sin tur har allvarliga konsekvenser för individer, familjer och hälso- sjukvårdssystem. De vanligaste formerna av demens är Alzheimers sjukdom, vaskulär demens och frontallobsdemens. En demenssjukdom medför ofta en stor fysisk, psykisk och social påfrestning. Syftet med litteraturstudien var att belysa anhörigvårdares upplevelse av att leva med en närstående som drabbats av demens. Studien baseras på nio kvalitativa och två kvantitativa artiklar. Analysen resulterade i tre huvudkategorier: "Upplevelse av förändrad relation", "Upplevelse av förändrad vardag" och "Upplevelse av stödbehov". I resultatet framkom det att anhöriga upplevde en rollförändring vilket påverkade såväl relationer som anhörigas hälsa. Upplevelser av ensamhet, bundenhet och isolering var stor samt känslan av att förlora kontrollen över sitt liv. Resultatet visar även på att anhöriga kan uppleva meningsfullhet i vårdandet. Personen med demens blir ofta allt mer beroende av familjemedlemmars stöd för att klara sin dagliga livsföring. Anhöriga behöver i sin tur stöd för att hantera vardagen och för att öka känslan av trygghet i deras omsorgssituation. En sjuksköterska behöver goda grundläggande kunskaper om den kliniska bilden och symtomatologi av kognitiv nedgång för att kunna ge anhöriga värdefulla råd och information.

No description available.

The experiences of family caregivers of adults diagnosed with Non-Epileptic Attack Disorder (NEAD) are under-researched. To address this lack of research and the Department of Health’s (DOH) aim to focus on the experiences of caregivers to inform the development of appropriate services (DOH, 2010), this narrative inquiry focuses on the stories told by eight caregivers of adults diagnosed with NEAD. Each narrative, which was collected through loosely structured interviews, was analysed from both a content and performative perspective. Multiple readings of the narratives revealed that caregivers told two different story ‘types’ about their experiences: stories of ‘biographical continuity’ and stories of ‘biographical disruption’. These findings are discussed in relation to the relevant literature and clinical implications. Methodological limitations and directions for future research are also presented. The study provides a valuable insight for any professional working with caregivers of individuals with NEAD and it is hoped that this research will promote dialogue amongst professionals and readers.

Individuals with multiple sclerosis (MS), especially those living in Latin America, often require assistance from family caregivers throughout the duration of disease. Previous findings suggest that family caregivers may experience positive and negative effects from providing care to individuals with MS, but few studies have examined the impact of MS caregiving on caregivers from Latin America. The current study examined the relationships between MS impairments (functional, neurological, cognitive, behavioral and emotional), unmet family needs (household, informational, financial, social support, health), and caregiver psychosocial functioning (satisfaction with life, anxiety, burden, and depression) in a sample of 81 MS caregivers from Guadalajara, Mexico. Canonical correlations revealed that behavioral impairments were associated with higher burden and decreased satisfaction with life, and that unmet financial, social support, and informational needs were associated with higher caregiver burden. A structural equation model demonstrated the meditational effect of unmet family needs on the relationship between MS impairments and caregiver mental health. These findings suggest that interventions for MS caregivers in Latin America should focus on reducing caregiver burden by addressing unmet family needs for information, financial, and social support while teaching caregivers ways to manage the patient’s behavioral symptoms.

O presente estudo teve como objetivo caracterizar os cuidadores familiares de idosos demenciados, bem como identificar a demanda de cuidados prestados e relacionar ao estagiamento da demência. Trata-se de um estudo epidemiológico descritivo e seccional, realizado no período de 2001 a 2002. A amostra da investigação constou de 104 idosos demenciados, com idade de 60 anos ou mais, residentes na zona urbana de Ribeirão Preto-SP, atendidos em um ambulatório terciário de um hospital governamental e 90 cuidadores familiares. Foram consultados prontuários e após, realizadas visitas domiciliares para aplicação de um instrumento de avaliação multidimensional do estado funcional do idoso e um questionário estruturado com perguntas fechadas relativas aos cuidadores. Os resultados evidenciaram que 66,3% dos idosos eram do sexo feminino, com média de 75,5 anos. O nível educacional correspondeu a 47,1% dos idosos com até 4 anos de escolaridade, os analfabetos e os que aprenderam ler informalmente somaram 35,5%. O estagiamento da demência foi classificado, previamente no prontuário médico, representando 27,9% demência grave; 22,1% demência moderada; 27,9% demência leve, 6,4% questionável e 15,4% não haviam sido classificados. Evidenciou-se que, dos 104 idosos, 90 tinham cuidadores, representados por 80% do sexo feminino, a maioria familiar: filha, esposa e nora. A idade média foi de 52,3 anos de idade. O tempo dedicado ao cuidar representou 15,10horas/dia. Quanto à ajuda recebida do suporte informal, a maioria não recebe ajuda ou recebem às vezes. A interferência na vida do cuidador (trabalho, repouso, lazer, passeios, o cuidar-se) foi proporcional ao agravo da demência, assim como as respostas referentes ao cansaço físico e emocional. Dos cuidadores, 45,7% relataram que o cuidar provoca tristeza, enquanto apenas uma pequena parcela dos cuidadores referiu utilizar sistemas de suporte social formal. As dificuldades nas atividades da vida diária do idoso geram a necessidade de cuidador. Os dados mostram a grande demanda na atividade de cuidar e conseqüente sobrecarga, revelando a necessidade urgente de estratégias de suportes formais e informais para os cuidadores de idosos. / The present study had the objective to understand the reality of the demented elderly caregivers and to identify the demand of rendered cares and to relate to the rating of the dementia. It is a observational and sectional study, performed in the period from 2001 to 2002. The sample of the investigation consisted of 104 demented elderly, aged 60 years-old or more, residents in the urban area of Ribeirão Preto-SP, assisted in a tertiary outpatient clinic of a government hospital and 90 family caregivers. Medical files were consulted and afterwards, home visits were performed for the application of a multidimensional instrument of evaluation of the elderly\'s functional state and a closed questionnaire structured with questions related to the caregivers. The results evidenced that 66,3% of the elderly were females, with an average age of 75,5 years-old. The education level corresponded to 47,1% of the elderly that had up to 4 years of education, the illiterates and the ones who known how to read informally added 35,5%. The rating of the dementia was classified, previously in the medical file, representing 27,9% serious dementia; 22,1% moderate dementia; 27,9% light dementia, 6,7% questionable and 15,4% had not been classified. It was evidenced that among the 104 seniors, 90 had caregivers, from which 80% were females, most of them family members: daughter, spouse and daughter-in-law. The average age was 52,3 years. The time dedicated when taking care represented 15,10 hours a day. As for the help received from the informal support, most don\'t receive help or they do sometimes. The interference in the caregiver\'s life (work, rest, leisure, walks, taking care) was proportional to the severity of the dementia as well as the answers regarding physical and emotional fatigue. Among the caregivers, 45,7% said that taking care provokes sadness. And just a small portion of the caregivers referred to use systems of formal social support. The difficulties in the activities of the elderly\'s daily life generate the caregiver\'s need. The data show the great demand in the activity of taking care and consequent overload, revealing the urgent need for strategies of formal and informal supports to the elderlys caregivers.