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1
O'Donnell, Deirdre. "65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis." Age and Ageing 48, Supplement_3 (September 2019): iii1—iii16. http://dx.doi.org/10.1093/ageing/afz102.14.
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Abstract Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future.1 The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland’s largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs.
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Reid, Laura, and Aisling Harmon. "146 The Lived Experience of Carer Resilience Told by Carer Advocates." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.87.
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Abstract Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia. Methods There are 43 family carer advocates on the network, all of whom were invited to participate in this research. The piece of qualitative research conducted by the network with its members took the form of a questionnaire. The research sought to ascertain how informed and supported carers felt as their loved ones transitioned to long term residential care and the stage thereafter. This research did not discuss the level of professional care given to their loved one but what supports and services were offered to the carer at that time and how this affected their resilience. The aspect of caring for a loved one availing of hospice care naturally emerged during the research process and this topic was also explored in relation to carer resilience. Completed questionnaires were analysed to show findings and draw conclusions. Results The research gives insight into the lived experience of carer resilience told by carer advocates. The results show that carer advocates feel ill-informed and badly supported as their loved one transitions to or resided in long term residential care. The research also showed that carers feel more informed and supported if their loved one availed of hospice care rather than long term residential care. Conclusion Carers are not properly informed or supported when their loved one transitions to or resides in long term residential care and this negatively affects their resilience.
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Horner, Barbara, and Duncan P. Boldy. "The benefit and burden of "ageing-in-place" in an aged care community." Australian Health Review 32, no. 2 (2008): 356. http://dx.doi.org/10.1071/ah080356.
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Ageing-in-place is usually viewed as a positive approach to meeting the needs of the older person, supporting them to live independently, or with some assistance, for as long as possible. It implies that older people prefer to live in their own home, rather than in an institution or care centre. However, there is little in the literature about the implications of ageing-in-place for the individual or their carers, or the burden this can place on service providers and aged care communities. In an action research study that investigated the complexities and challenges of change in an aged care community in Western Australia, the implications of ageing-in-pace were apparent. The study revealed how residents expressed a desire to agein- place and identified it as a critical element of quality of life and an important component of social connection. The findings also revealed the burden of ageing-in-place on carers, family and the organisation, and sufficient attention must also be paid to the wider impact on the individual, the family and carers.
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Finn, Caroline, and Pauline Boland. "59 Male Family Carers’ Perceptions of Formal Support Services, a Meta-ethnography." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.34.
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Abstract Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers’ experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare’s (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men’s experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers’ experience to develop more inclusive supports and consequently increase service uptake.
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Singh, Prabhjot, Rafat Hussain, Adeel Khan, Lyn Irwin, and Roslyn Foskey. "Dementia Care: Intersecting Informal Family Care and Formal Care Systems." Journal of Aging Research 2014 (2014): 1–9. http://dx.doi.org/10.1155/2014/486521.
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Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.
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Poole, Marie, Nuala Davis, and Louise Robinson. "Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life." Age and Ageing 49, no. 2 (December 4, 2019): 171–74. http://dx.doi.org/10.1093/ageing/afz150.
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Abstract As the ageing population grows globally, the need for informal care—usually provided by family and friends—will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC—dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support.
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Oliveira, Deborah, Lidia Sousa, and Aimee Aubeeluck. "What would most help improve the quality of life of older family carers of people with dementia? A qualitative study of carers’ views." Dementia 19, no. 4 (August 4, 2018): 939–50. http://dx.doi.org/10.1177/1471301218791906.
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Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.
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Lyons, Karen, and Christopher Lee. "175 A Dyadic Approach to Life-Threatening Illness in Older Adults and their Spouse Carers." Age and Ageing 48, Supplement_3 (September 2019): iii1—iii16. http://dx.doi.org/10.1093/ageing/afz102.39.
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Abstract Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult’s fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.
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Jones, Carys, Rhiannon Tudor Edwards, and Barry Hounsome. "Qualitative Exploration of the Suitability of Capability Based Instruments to Measure Quality of Life in Family Carers of People with Dementia." ISRN Family Medicine 2014 (March 4, 2014): 1–9. http://dx.doi.org/10.1155/2014/919613.
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Background. In an ageing population, many individuals find themselves becoming a carer for an elderly relative. This qualitative study explores aspects of quality of life affected by caring for a person with dementia, with the aim of identifying whether capability based questionnaires are suitable for measuring carer quality of life. Methods. Semistructured interviews lasting up to an hour were conducted, November 2010–July 2011, with eight family carers of people with dementia. Interviews typically took place at the participants’ homes and were recorded and transcribed verbatim. Framework analysis was used to code and analyse data. Domains from three capability based questionnaires (ICECAP-O, Carer Experience Scale, and ASCOT) were used as initial codes. Similar codes were grouped into categories, and broader themes were developed from these categories. Results. Four themes were identified: social network and relationships; interactions with agencies; recognition of role; and time for oneself. Conclusions. By identifying what affects carers’ quality of life, an appropriate choice can be made when selecting instruments for future carer research. The themes identified had a high degree of overlap with the capability instruments, suggesting that the capabilities approach would be suitable for future research involving carers of people with dementia.
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Costantini, Hiroko. "COVID-19 Vaccine Literacy of Family Carers for Their Older Parents in Japan." Healthcare 9, no. 8 (August 12, 2021): 1038. http://dx.doi.org/10.3390/healthcare9081038.
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In super-ageing Japan, COVID-19 vaccinations were starting to reach older people as of June 2021, which raises the issue of vaccine literacy. This study focuses on family members who work and also care for their older parents, as they are at risk of COVID-19 and also risk transmitting COVID-19 to the parents they care for and potentially influencing their parents’ vaccine uptake. Such family carers are central to the approach in Japan to achieving a sustainable and resilient society in response to ageing. Contrasting family carers’ COVID-19 vaccine literacy with their overall health literacy provides insights into their preparedness for COVID-19 vaccinations. The purpose of this study is to understand how vaccine literacy, compared to health literacy, varies across family carers and the sources of information they use. Through a cross-sectional online survey, family carers’ vaccine literacy, health literacy and their sources of information, including mass media, social media, health and care professionals, family, colleagues, friends, and others, were assessed. The participants’ (n = 292) mean age was 53, with 44% women, and an average of 8.3 h per week caring for their parents. Notwithstanding the increased risks from COVID-19 with age, COVID-19 vaccine literacy relative to health literacy for older family carers is lower on average, higher with increased provision of care, and more variable, resulting in a substantial proportion of older family carers with relatively low vaccine literacy. At this stage of vaccine rollout in Japan, family carers’ sources of information to inform COVID-19 vaccine literacy is distinct, including more national and local mass media versus less health and care professionals and informal networks, which indicates the importance of tailored health communication strategies to enhance vaccine literacy
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França, Alex Bacadini, Adam Lee Gordon, Rajvinder Samra, Evelise Saia Rodolpho Duarte, and Alessandro Ferrari Jacinto. "Symptoms of mood disorders in family carers of older people with dementia who experience caregiver burden: a network approach." Age and Ageing 49, no. 4 (February 24, 2020): 628–33. http://dx.doi.org/10.1093/ageing/afaa008.
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Abstract Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. Results the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. Conclusions this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions.
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van Wezel, Nienke, Anneke L. Francke, Emine Kayan Acun, Walter LJM Devillé, Nies J. van Grondelle, and Marco M. Blom. "Explanatory models and openness about dementia in migrant communities: A qualitative study among female family carers." Dementia 17, no. 7 (June 15, 2016): 840–57. http://dx.doi.org/10.1177/1471301216655236.
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Background The prevalence of dementia is increasing among people with a Turkish, Moroccan and Surinamese-Creole background. Because informal care is very important in these communities, it is pertinent to see what explanations female family carers have for dementia and whether they can discuss dementia openly within the community and the family. Method Forty-one individual interviews and six focus group interviews ( n = 28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia, and who live in The Netherlands. Qualitative analysis has been carried out, supported by the software MaxQda. Results The dominant explanations of dementia given by the female family carers interviewed are in line with what Downs et al. describe as the explanatory models ‘dementia as a normal ageing process’ and ‘dementia as a spiritual experience’. In addition, some female family carers gave explanations that were about an interplay between various factors. Turkish and Moroccan informal caregivers ascribe the causes of dementia relatively often to life events or personality traits, whereas Surinamese Creole caregivers frequently mention physical aspects, such as past dehydration. However, the explanatory model ‘dementia as a neuropsychiatric condition', which is dominant in Western cultures, was rarely expressed by the informal caregivers. The female family carers generally talked openly about the dementia with their close family, whereas particularly in the Turkish and Moroccan communities open communication within the broader communities was often hampered, e.g. by feelings of shame. Conclusions Female family carers of Turkish, Moroccan or Surinamese Creole backgrounds often consider dementia as a natural consequence of ageing, as a spiritual experience, and/or as an interplay between various factors. They feel they can talk openly about dementia within their close family, while outside the close family this is often more difficult.
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Cheung, Gary, April Yuehan Su, Karen Wu, Blake Yue, Susan Yates, Adrian Martinez Ruiz, Rita Krishnamurthi, and Sarah Cullum. "The Understanding and Experiences of Living with Dementia in Chinese New Zealanders." International Journal of Environmental Research and Public Health 19, no. 3 (January 24, 2022): 1280. http://dx.doi.org/10.3390/ijerph19031280.
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Little is known about the lived experience of dementia in the New Zealand Chinese community. This study aims to explore the understanding and experiences of living with dementia in Chinese New Zealanders. Participants were recruited from a memory service and a community dementia day programme. In-depth interviews were conducted by bilingual and bicultural researchers. The recorded interviews were transcribed and thematically analysed. Sixteen people living with dementia and family carers participated in this study. The first theme revealed the lack of understanding of dementia prior to diagnosis, the commonly used term of “brain shrinkage” and that dementia is associated with getting older. The second theme covered the symptoms experienced by people with dementia and how family carers found anhedonia and apathy particularly concerning. The third theme highlighted the tension between cultural obligation and carer stress. The fourth theme is about the stigma attached to dementia. Our results provide some insight into ways to improve dementia care for Chinese New Zealanders, including targeted psychoeducation in the Chinese community to improve awareness and to reduce stigma, access to person-centred interventions, and learning about strategies for healthy ageing to live well with dementia, and emotional support and psychoeducation for family carers to reduce carer stress.
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Hartigan, Irene, Kevin Brazil, Sharon Kaasalainen, Tamara Sussman, Jenny Van Der Steen, Martin Loucka, Paola Di Giulio, and Nicola Cornally. "333 A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.216.
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Abstract 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.
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Lafferty, Attracta, Gerard Fealy, Áine Teahan, Eilish McAuliffe, Amanda Phelan, Liam O'Sullivan, and Diarmuid O'Shea. "153PROFILING FAMILY CARERS OF PEOPLE WITH DEMENTIA: RESULTS FROM A NATIONAL SURVEY." Age and Ageing 45, suppl 2 (September 2016): ii13.53—ii56. http://dx.doi.org/10.1093/ageing/afw159.151.
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Vecchio, Nerina. "Understanding the use of respite services among informal carers." Australian Health Review 32, no. 3 (2008): 459. http://dx.doi.org/10.1071/ah080459.
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Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.
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Balsinha, Conceição, Steve Iliffe, Sónia Dias, and Manuel Gonçalves-Pereira. "431 - DEMENTIA IN PRIMARY CARE AND DOCTOR-PATIENT-CARER INTERACTIONS: PRELIMINARY FINDINGS." International Psychogeriatrics 32, S1 (October 2020): 147. http://dx.doi.org/10.1017/s1041610220002847.
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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.
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Phelan, Amanda, Sandra McCarthy, Mary Forde, Emma Nicholson, Attracta Lafferty, Eilish McAuliffe, Liam O’Sullivan, Diarmuid O’Shea, and Gerard Fealy. "146Feasibility of a Resilience-Enhancing Resource for Family Carers of People with Dementia." Age and Ageing 47, suppl_5 (September 1, 2018): v1—v12. http://dx.doi.org/10.1093/ageing/afy141.20.
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Kendall, M., E. Cowey, S. A. Murray, M. Barber, S. Borthwick, K. Boyd, C. McAlpine, D. Stott, and G. Mead. "162Experiences And Multi-Dimensional Needs of People With Major Stroke And Their Family Carers." Age and Ageing 46, suppl_1 (May 2017): i46. http://dx.doi.org/10.1093/ageing/afx070.162.
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Blake, Cathal, and Louise Hopper. "A qualitative investigation into family carers’ experiences of living with/caring for a person with young-onset dementia." International Journal of Care and Caring 5, no. 3 (August 1, 2021): 469–87. http://dx.doi.org/10.1332/239788221x16166022097035.
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Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.
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Lafferty, Attracta, Gerard Fealy, Carmel Downes, and Jonathan Drennan. "The prevalence of potentially abusive behaviours in family caregiving: findings from a national survey of family carers of older people." Age and Ageing 45, no. 5 (May 25, 2016): 703–6. http://dx.doi.org/10.1093/ageing/afw085.
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MURPHY, BARBARA, HILARY SCHOFIELD, JULIE NANKERVIS, SIDNEY BLOCH, HELEN HERRMAN, and BRUCE SINGH. "Women with Multiple Roles: The Emotional Impact of Caring for Ageing Parents." Ageing and Society 17, no. 3 (May 1997): 277–91. http://dx.doi.org/10.1017/s0144686x97006429.
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As part of a wider study of family caregiving, a sample of 297 women caring for an ageing parent were identified through a random statewide telephone survey involving over 26,000 households in Victoria, Australia. In addition to elder care, half these women were in paid employment and a third had dependent children. Overload was highest for carers with multiple roles, particularly those of parent or worker. Resentment in the caring role was highest for those who had fewer roles apart from elder care, particularly those who had quit work, and those without a partner. Life satisfaction was higher for partnered and working carers. These findings highlight the need for structures to support carers to maintain multiple roles, including greater flexibility in the workplace and encouragement of greater reliance on informal networks and formal services, both of which require increased societal acknowledgment of the elder care role.
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Coimín, Diarmuid Ó., Liz Ferguson, Clíona Beaumont, Sheighle Sheridan, and Lorraine Kyne. "214 Advance Care Planning: Perspectives of People with Dementia and their Family Members." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.130.
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Abstract Background Clear and effective communication is central to all aspects of healthcare. Discussions centred on advance care planning are vital to ensure the person with dementia receives the support and care they need in the future based on their will and preferences. The aim of this study was to ascertain from those provided with information on advance care planning if it met their needs and assisted their understanding on planning for the future. Methods This study centred on eliciting the views of older persons diagnosed with dementia and their carers on the provision of an information booklet titled ‘I have dementia ... How do I plan for the future’. Ethical approval was sought and provided to conduct this study. Participants presenting to an acute hospital day ward for older persons were identified and recruited through the medicine for older person’s team. 42 people consented to participate with 20 people returning questionnaires, a 48% response rate. Thematic analysis was applied to qualitative comments and descriptive statistical analysis was undertaken with quantitative data. Results The overwhelming majority (95%) of respondents found the provision of an information booklet on advance care planning helpful. Nearly two thirds (65%) spoke with someone about advance care planning thereafter. 60% of all respondents reporting that the booklet was either ‘easy’ or ‘very easy’ (40%) to understand. Participants strongly endorsed the provision of information on advance care planning and the benefits that it bestowed to them. Conclusion The study has confirmed the importance of communication and the provision of information on advance care planning for people with dementia and their carers in the day ward setting for older persons. Findings strongly endorse the information provided whilst also suggesting minor amendments to the booklet to improve future editions.
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Tang, Eugene Y. H., Christopher Price, Blossom C. M. Stephan, Louise Robinson, and Catherine Exley. "Post-stroke memory deficits and barriers to seeking help: views of patients and carers." Family Practice 36, no. 4 (November 19, 2018): 506–10. http://dx.doi.org/10.1093/fampra/cmy109.
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Abstract Background Memory and cognitive deficits post stroke are common and associated with increased risk of future dementia. Rehabilitation tends to focus on physical recovery; however, once in the community, it is unclear what happens in the longer term to the stroke-survivor with new memory difficulties. Objective The aim of this qualitative study was to examine in stroke-survivors what factors influence contact with health professionals. Method Semi-structured interviews were conducted with stroke-survivors and their family carers where memory difficulties were reported at 6 months post stroke. A topic guide was used which sought to critically examine participants care experience following their stroke diagnosis. All participants were interviewed at baseline (around 6 months post stroke) and offered an interview at around 12 months post stroke. All interviews were conducted in the North East of England. All transcripts were coded and thematically analysed. Results Ten stroke-survivors (age range 72–84 years) were interviewed alongside five carers at baseline; eight stroke-survivors and four carers agreed to a follow-up interview. Three main barriers were identified: (i) fear of a dementia diagnosis; (ii) denial or minimization of symptoms leading to adaptation and (iii) obstacles to seeking help in the community. Conclusions With an ageing population and increase in stroke-survival, the burden of post-stroke cognitive impairment and dementia will only increase. Stroke-survivors and their family carers in this study have identified issues that may hinder their presentation to health care professionals at a personal and organizational level. Health professionals need to be aware of these potential issues when planning services for stroke-survivors.
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Vreugdenhil, Anthea. "‘Ageing-in-place’: Frontline experiences of intergenerational family carers of people with dementia." Health Sociology Review 23, no. 1 (April 2014): 43–52. http://dx.doi.org/10.5172/hesr.2014.23.1.43.
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Minnes, Patricia, Lynn Woodford, and Jennifer Passey. "Mediators of Well-being in Ageing Family Carers of Adults with Intellectual Disabilities." Journal of Applied Research in Intellectual Disabilities 20, no. 6 (November 2007): 539–52. http://dx.doi.org/10.1111/j.1468-3148.2007.00364.x.
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Walker, Carol, and Cally Ward. "Growing older together: ageing and people with learning disabilities and their family carers." Tizard Learning Disability Review 18, no. 3 (July 5, 2013): 112–19. http://dx.doi.org/10.1108/tldr-02-2013-0018.
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Brennan, Damien, Rebecca Murphy, Philip McCallion, Darren McCausland, and Mary McCarron. "200Future Care Planning Amongst Parent and Sibling Carers with Ageing Family Member with an Intellectual Disability." Age and Ageing 46, Suppl_3 (September 2017): iii13—iii59. http://dx.doi.org/10.1093/ageing/afx144.199.
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Hennelly, Niamh. "296Exploring Personhood in Formal Care Provision in Ireland: Perspectives from Family Carers of People with Dementia." Age and Ageing 47, suppl_5 (September 1, 2018): v1—v12. http://dx.doi.org/10.1093/ageing/afy141.52.
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O'Shea, Emma, Suzanne Timmons, Eamon O'Shea, and Kate Irving. "48 Accessing Respite Services for People with Dementia and Their Carers: A Qualitative Study with Multiple Stakeholders." Age and Ageing 48, Supplement_3 (September 2019): iii1—iii16. http://dx.doi.org/10.1093/ageing/afz102.08.
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Abstract Background People with dementia and carers do not always access respite services in a timely manner, and in some cases, they do not access respite services at all. While carers’ perspectives on respite access have been explored, other stakeholder perspectives, especially those of people with dementia, are under-represented in the existing literature. The aim of this study was to synthesise multiple stakeholders’ perspectives, including people with dementia, on accessing respite services. Methods Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (N=6), carers (N=9), respite front-line staff (N= 4), respite managers (N=8), primary care professionals (N=3) and policy-makers/academics (N=5). Informed consent was obtained from all stakeholders who could give this. Dewing's ‘process consent’ method was employed in relation to people with dementia. Data were interpreted inductively using thematic analysis. We aimed to move beyond the semantic level of meaning, and to interpret patterns of meaning in the data. Reflexivity was considered throughout the research process. Results Three themes (‘Service Acceptability’; ‘Navigational Knowledge and Skills’; ‘Constructing and Adjudicating Respite Need’) were identified that relate to how access to respite services is negotiated between service providers and dyads. Conclusion A number of the findings support previous research; however novel findings discussed relating to the access negotiation process include 1) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers non-medical care as a family responsibility, and 2) the constraining effects of disparate conceptualisations of ‘respite’ between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision.
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Toal, Deborah, and DrPatricia McCaffrey. "266 Patient and Carers Experience of an Acute Care at Home Team: A Service Evaluation." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.166.
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Abstract Background The Aim of the Acute Care at Home Team is to provide acute care to over 65's in the patient's own home, providing assessment and treatment of acute conditions such as pneumonia, urinary sepsis and heart failure. It is a multidisciplinary team that works together to streamline services to enable a patient to stay safely in their own home. A full comprehensive geriatric assessment is carried out in all patients to help improve patient outcomes. The patients have full access to in patient services such as scans, and x-rays. All blood tests are treated as urgent to ensure the patient is in no way disadvantaged by being treated by acute care at home compared with hospital care. The aims and objectives are to explore patient and family experiences and identify any areas for improvement. Methods A service users and carers experience Questionnaire (N=31) was used to gain insight into how satisfied the patient or family were with the service and what the experience was like having the team come into their home. Results Patient satisfaction with this Acute Care at Home Team was reported at 100%. Patients were happy with the care they received, 100% of patients were happy with staff's knowledge of their condition and treatment plan. All of the respondents stated they would both recommend the service and use it again. The qualitative responses were in keeping with 100% satisfaction in that they were positive in nature. Conclusion This service evaluation has shown that patient and carer experience of this Acute Care at Home Team is a positive one, with 100% satisfaction levels. There are some small areas to be improved upon, however the results show this service is providing the over 65 population with a good experience of being treated at home as an alternative to hospital care when acutely unwell.
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Green, R., H. King, and C. Nicholson. "532 CARING FOR AND CARING ABOUT OLDER PEOPLE LIVING WITH SEVERE FRAILTY DURING COVID-19." Age and Ageing 50, Supplement_2 (June 2021): ii8—ii13. http://dx.doi.org/10.1093/ageing/afab116.17.
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Abstract Introduction An ongoing study collected survey and interview data from older people with frailty living in the community near end-of-life during the Covid-19 pandemic. Methods Unstructured interviews with older people with frailty living in the community (N = 10), which included accounts from unpaid carers (N = 5), were video and audio recorded between October–November 2021. Six of these older people have died since fieldwork completion. A face-to-face survey collected data from a further 10 older people. Participants ages ranged from 70–99, 11, men, and 9 women, living in owned, rented, or sheltered accommodation, with Clinical Frailty Scores of 6 (N = 8), 7 (N = 9), and 8 (N = 3). Results Topics raised in relation to the pandemic included loss of social contact and increased loneliness, concern about not physically getting out, and losing physical function. Older people struggled to gain access to health and social care for support and previously received services were withdrawn. Most participants did not have access to internet and relied heavily on families to facilitate virtual contact with health professionals. Families and friends were the main anchor in facilitating social and health care including chasing up medications, liaising with social care to ensure quality and consistency of care provided, and monitoring older people’s health. Where older people’s conditions worsened family provided intense support, though family carers described the strain and unsustainability of this provision. Older people and their families felt they had been forgotten. Conclusions These are insights from hard-to-reach population that are frequently invisible. Greater examination of the impact of using communication technologies in care provision on those with poor access to and capabilities with using these technologies is required. Unpaid carers need more information and resources to support the care they provide and to facilitate access to appropriate social and health care services for those they care for.
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Horn, Vincent, Cornelia Schweppe, Anita Böcker, and María Bruquetas-Callejo. "Live-in migrant care worker arrangements in Germany and the Netherlands: motivations and justifications in family decision-making." International Journal of Ageing and Later Life 13, no. 2 (December 6, 2019): 83–113. http://dx.doi.org/10.3384/ijal.1652-8670.18410.
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Private households in ageing societies increasingly employ live-in migrant carers (LIMCs) to care for relatives in need of 24/7 care and supervision. Whilst LIMC arrangements are a common practice in Germany, they are only recently emerging in the Netherlands. Taking this development as a starting point, this study uses the countries’ different long-term care (LTC) regimes as the analytical framework to explore and compare the motivations and justifications of German and Dutch family carers who opt for an LIMC arrangment. Findings show that Dutch and German LTC regimes impact differently the decision-making processes of families, as well as on patterns of justification, through a combination of policies and social norms and their related expectations towards care and care work in old age.
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Henry, J., A. Jagannathan, K. Bhavana, B. Thomas, S. Bharath, M. Varghese, O. P. Jhirwal, and P. T. Sivakumar. "Group intervention for carers of geriatric patients: experiences from a clinic in India." International Psychiatry 7, no. 2 (April 2010): 30–32. http://dx.doi.org/10.1192/s1749367600005683.
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Sixty per cent of the global elderly population live in low-and middle-income countries, and this proportion was expected to rise to 70% by 2010 (International Institute of Ageing, 2001; Ferri et al, 2005). The 2001 Indian census found over 70 million people aged 60 years or more (considered senior citizens according to the Indian National Policy on Older Persons). Most of those senior citizens live with younger family members and are dependent on them for financial and social support. Hence, any physiological and psychological changes in the older family members affect the younger supportive members as well.
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Brennan, Damien, Rebecca Murphy, Philip McCallion, and Mary McCarron. "024CAREGIVING CAPACITY AND FUTURE CARE PLANNING OF FAMILY CARERS FOR OLDER PEOPLE WITH AN INTELLECTUAL DISABILITY IN IRELAND." Age and Ageing 45, suppl 2 (September 2016): ii1.1—ii12. http://dx.doi.org/10.1093/ageing/afw159.01.
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Reigada, Carla, Attracta Lafferty, Áine Teahan, Amanda Phelan, Liam O’Sullivan, Sandra McCarthy, Eilish McAuliffe, Diarmuid O’Shea, and Gerard Fealy. "132Key Considerations in the Development of a Participatory Action Research Network of Family Carers of People with Dementia." Age and Ageing 46, Suppl_3 (September 2017): iii1—iii12. http://dx.doi.org/10.1093/ageing/afx145.25.
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Conneely, Mairéad, Pauline Boland, Aoife O'Neill, David Byrne, Sinéad Cronin, Dominic Quinn, Dominic Trépel, et al. "A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research." HRB Open Research 3 (January 14, 2020): 1. http://dx.doi.org/10.12688/hrbopenres.12979.1.
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Background: There has been a policy shift towards public and patient involvement (PPI) in population health and health services research in Ireland and internationally. Despite growing empirical evidence that PPI can have positive impacts on the quality and appropriateness of health research and innovation, little is known about the involvement and impact of older adults as research partners. The aim of this study is to 1) describe the process of establishing a PPI panel of older adults, family carers and ageing research academics and 2) to evaluate the impact of this research partnership on all members of the PPI panel. Methods: A partnership-focused framework will guide the recruitment and establishment of a PPI panel of older adults, family carers and academic researchers. Between eight and ten older adults and four and six family carers with experience of using health services will be recruited through advertisement in community locations and through gatekeepers in a range of non-governmental, voluntary, and community organisations of older adults in the Mid-West region of Ireland. Academic researchers will be recruited through an established Ageing Research Centre at the University of Limerick. Data collected will include an activity log and records of all meetings, recorded panel discussions and recorded individual interviews with all members of the research team at key time points (12 and 24 months after establishment of the panel). Data will be transcribed, managed in NVivo and analysed using an inductive approach to thematic analysis. Dissemination of research findings will be facilitated by the research partnership team of academics and older adults. Discussion: This study will identify learning about the process of establishing a PPI panel guided by a partnership-focused framework and will qualitatively evaluate the impact of participation in a PPI panel for all members of the research team.
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Conneely, Mairéad, Pauline Boland, Aoife O'Neill, David Byrne, Sinéad Cronin, Dominic Quinn, Dominic Trépel, et al. "A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research." HRB Open Research 3 (July 20, 2020): 1. http://dx.doi.org/10.12688/hrbopenres.12979.2.
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Background: There has been a policy shift towards public and patient involvement (PPI) in population health and health services research in Ireland and internationally. Despite growing evidence that PPI can have positive impacts on the quality and appropriateness of health research, little is known about the involvement and impact of older adults as research partners. The aim of this study is to 1) describe the process of establishing a PPI panel of older adults, family carers and ageing research academics and 2) to evaluate the impact of this research partnership on all research partners. Methods: A partnership-focused framework will guide the recruitment and establishment of a PPI panel of older adults, family carers and academic researchers. Eight to ten older adults and four to six family carers with experience of using health services will be recruited through gatekeepers in a range of non-governmental, voluntary, and community organisations in the Mid-West region of Ireland. Academic researchers will be recruited through the Ageing Research Centre at the University of Limerick. To evaluating the impact of the research partnership on all members of the PPI panel we propose to record an activity log, maintain a record of all meeting, panel discussions and conduct individual interviews with all members of the research team at key time points. The final plan for evaluation will be negotiated and agreed with all members of the PPI panel. Data will be transcribed, managed in NVivo and analysed using an inductive approach to thematic analysis. Dissemination of research findings will be facilitated by the research partnership team of academics and older adults. Discussion: This study will identify learning about the process of establishing a PPI panel guided by a partnership-focused framework and will evaluate the impact of participation in a PPI panel for all members of the research team.
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Thompson, David. "Commentary on “Growing older together: ageing and people with learning disabilities and their family carers”." Tizard Learning Disability Review 18, no. 3 (July 5, 2013): 120–23. http://dx.doi.org/10.1108/tldr-03-2013-0020.
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Shang, Xiaoyuan, Morris Saldov, and Karen R. Fisher. "Informal Kinship Care of Orphans in Rural China." Social Policy and Society 10, no. 1 (December 8, 2010): 103–16. http://dx.doi.org/10.1017/s1474746410000436.
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This study examines kinship care of orphans throughout China. It finds that in addition to children becoming orphaned if both parents die, some children are treated as orphans when their father dies and rural traditional kinship care obligations restrict the viability of widowed mothers continuing to care for their child. When mothers are forced for socioeconomic reasons to leave the paternal extended family, children effectively become orphans, dependent on ageing grandparents. Girls and disabled children are most at risk. Implementing financial and other support to orphans, widowed mothers and kinship carers could improve the sustainability of these family relationships.
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Schofield, Deborah, Melanie J. B. Zeppel, Robert Tanton, J. Lennert Veerman, Simon J. Kelly, Megan E. Passey, and Rupendra N. Shrestha. "Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030." British Journal of Psychiatry 215, no. 5 (September 16, 2019): 654–60. http://dx.doi.org/10.1192/bjp.2019.204.
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BackgroundIntellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society.AimsTo estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments.MethodWe used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15–64), and projected costs of caring from 2015 in 5-year intervals to 2030.ResultsThe model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers.ConclusionsInformal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.Declaration of interestNone.
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Soar, N., J. Birns, P. Sommerville, A. Lang, and S. Archer. "99 Approaches to Eating and Drinking with Acknowledged Risk: A Systematic Review." Age and Ageing 49, Supplement_1 (February 2020): i34—i36. http://dx.doi.org/10.1093/ageing/afz196.01.
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Abstract Introduction Patients with dysphagia may consider eating and drinking with acknowledged risk (EDAR) instead of artificial hydration/nutrition. Timely consideration of complex issues is required including dysphagia reversibility, prognosis, risk/benefit discussions, patient wishes, their capacity, best interests and advanced care planning. This study aimed to ascertain if EDAR protocols improve care through a systematic literature review. Methods PUBMED, MEDLINE, CINAHL and EMBASE were searched for English language articles to May ‘19 with terms related to EDAR, dysphagia and end of life. Articles and conference abstracts with original data were agreed for inclusion by two independent reviewers. Levels of evidence were assessed using the Sackett scale (Cook et al, Chest. 1995; 4: 227–230). Study themes were identified and discussed. Results 12 articles met the inclusion criteria with varied methodology. The highest level of evidence was III (cohort study) and most were limited to patients with dementia, stroke, in older person’s wards or residential homes. 4 articles described a systematic approach to EDAR for in-patients and reported reductions in days nil-by-mouth until feeding plans are made and improvements in documentation of decision making, nutrition plans and capacity assessment. Other major themes included the need for an EDAR protocol, staff, patient and carer/family knowledge of EDAR, development of a protocol and the language of “risk feeding”. Formal meta-analysis was not possible due to the level and mix of methodology. Conclusions There is a paucity of evidence to determine if EDAR protocols improve care. However support is emerging for a coordinated approach to managing EDAR. Findings suggest having a protocol is not enough; education, training and communication within teams and with patients and carers is essential and this justifies further work. The lack of research into the impact of EDAR protocols on patient and carer experience means they must be central to any future work.
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Hussain, Rafat, Stuart Wark, and Peta Ryan. "Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia." International Journal of Environmental Research and Public Health 15, no. 10 (October 16, 2018): 2267. http://dx.doi.org/10.3390/ijerph15102267.
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Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.
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McHale, Cathy, Martina McGovern, Josephine Dewergifosse, Maria Domsa, Anna McMahon, Fergus Timmons, Julei Greene, et al. "330 Insights into Dementia- An Integrated Care Approach to Family Support." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.213.
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Abstract Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families. We identified the need for a localised educational resource for families and supportive others attending our specialist memory service Methods Staff from the Integrated Care Team, Specialist Memory Service and Primary Care were trained by the Alzheimer’s Society of Ireland to deliver a 6 week ‘Insights Into Dementia’ carers course. Tutors and dementia advisors from the Alzheimer’s Society of Ireland provided in-depth training prior to course delivery and feedback to the facilitators on a weekly basis. The course included advice and education on Dementia; Changing Relationships, Communication; Responding to changes in behaviour; Nutrition; Engaging in activities; Assisting with personal care and Safety in the home. Families gained advice regarding their self-care needs and learned how to access information and support. All services involved worked together to identify, refer and support families with dementia in the local area. The group took place in an accessible location at a time which accommodated families to attend. Each course attendee completed a questionnaire prior to and after commencing the group. Results The group has delivered education and support to 48 families to date. Feedback from participants was very positive with self-reported increase in confidence, knowledge and awareness about dementia. Waiting time to access support has significantly decreased. Every course has led to a support group who meet up on a regular basis in their community. Conclusion This novel collaboration has become a key part of the integrated care pathway we have developed to support people living with dementia and their supportive others in our catchment area. The Integrated Care approach has served to enrich the programme and allow for timely signposting to localised supports.
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Kendall, Marilyn, Susan Buckingham, Susie Ferguson, William MacNee, Aziz Sheikh, Patrick White, Allison Worth, Kirsty Boyd, Scott A. Murray, and Hilary Pinnock. "Exploring the concept of need in people with very severe chronic obstructive pulmonary disease: a qualitative study." BMJ Supportive & Palliative Care 8, no. 4 (August 26, 2015): 468–74. http://dx.doi.org/10.1136/bmjspcare-2015-000904.
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BackgroundDespite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals.MethodsWe recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need.Results14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified ‘normative’ needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were ‘felt’ by patients and carers but articulated in response to the researcher's questions rather than actively ‘expressed’. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill.ConclusionsIn contrast to professionally-defined ‘normative’ needs, patients rarely perceived themselves as needy, accepting their ‘felt’ needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to ‘express’ needs that are amenable to help without disturbing the adaptive equilibrium they have achieved.Trial registration numberNCT01650480.
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Chou, Y. C., C. Y. Pu, Y. C. Lee, L. C. Lin, and T. Kröger. "Effect of perceived stigmatisation on the quality of life among ageing female family carers: a comparison of carers of adults with intellectual disability and carers of adults with mental illness." Journal of Intellectual Disability Research 53, no. 7 (April 9, 2009): 654–64. http://dx.doi.org/10.1111/j.1365-2788.2009.01173.x.
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Lucas-Carrasco, Ramona, Ken Laidlaw, Juana Gómez-Benito, and Michael J. Power. "Reliability and validity of the Attitudes to Ageing Questionnaire (AAQ) in older people in Spain." International Psychogeriatrics 25, no. 3 (November 15, 2012): 490–99. http://dx.doi.org/10.1017/s1041610212001809.
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ABSTRACTBackground: As ageing is a personal experience, an attitude to ageing questionnaire is essential for capturing the most realistic appraisal of this important stage of life. Our aim was to study the psychometric properties of the Attitudes to Ageing Questionnaire (AAQ) in a sample of Spanish older people.Methods: A total of 242 participants aged 60 years and older were recruited from community centers, primary care centers, and family associations for the mentally ill and dementia. In addition to the AAQ, participants provided information on demographics, self-perception of health, comorbidity, health status (SF-12), depressive symptoms (GDS-30), and quality of life (WHOQOL-BREF and WHOQOL-OLD). Analysis was performed using standard psychometric techniques with SPSS v15.0.Results: No floor and ceiling effects were found, and missing data were low. The internal consistency measured by Cronbach's alpha for AAQ subscales were 0.59, 0.70, and 0.73. Exploratory Factor Analysis produced a three-factors solution accounting for 34% of the variance. A priori expected associations were found between some AAQ subscales with WHOQOL-BREF domains, with WHOQOL-OLD, SF-12, and the GDS-30 indicating good construct validity. In general, AAQ subscales differentiated between participants with lower and higher levels of education, and between a priori defined groups of older people (non-depressed vs. depressed; those with higher vs. lower physical comorbidities, and non-carers vs. carers).Conclusions: The Spanish version of the AAQ questionnaire showed acceptable psychometric properties in a convenience sample of Spanish older people. It is a useful measure of attitude for use with older people in social and clinical services.
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Millán-Calenti, J. C., M. Gandoy-Crego, M. Antelo-Martelo, M. López-Martinez, M. P. Riveiro-López, and J. M. Mayán-Santos. "Helping the family carers of Alzheimer’s patients: from theory…to practice. A preliminary study." Archives of Gerontology and Geriatrics 30, no. 2 (April 2000): 131–38. http://dx.doi.org/10.1016/s0167-4943(00)00044-3.
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Ryan, Assumpta, Laurence Taggart, Maria Truesdale-Kennedy, and Eamonn Slevin. "Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary." International Journal of Older People Nursing 9, no. 3 (March 15, 2013): 217–26. http://dx.doi.org/10.1111/opn.12021.
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WALKER, ALAN. "Why the UK Needs a Social Policy on Ageing." Journal of Social Policy 47, no. 2 (June 13, 2017): 253–73. http://dx.doi.org/10.1017/s0047279417000320.
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AbstractThis article makes the case for a radical new strategy on ageing which focuses on the whole life course with the intention of preventing many of the chronic conditions associated with old age. The case is built on recent research evidence and the life-course concept of ‘active ageing’ is used to encapsulate the practical measures required. Combining biological and social science insights it is argued that, while ageing is inevitable, it is also plastic. This means that it not only manifests itself in different ways but also that it can be modified by mitigating the various risk factors that drive it. Such action would have considerable potential to reduce the personal costs of chronic conditions such as strokes and those falling on family carers but, also, to cut the associated health and social care expenditures. The question of why such apparently beneficial policy action is not being taken is discussed and a range of barriers are identified. One of these appears to be the UK's extreme brand of neo-liberalism, which militates against the collective approach necessary to implement a social policy for active ageing. Although the case is made with primary reference to UK policy and practice, the call for action to prevent chronic conditions has global relevance.