Older Carers Research Articles

Caring in the time of COVID-19, longitudinal trends in well-being and mental health in carers in Ireland: Evidence from the Irish Longitudinal Study on Ageing (TILDA)

BackgroundThe COVID-19 pandemic in 2020 resulted in the older population being asked to remain at home and avoid other people outside their household. This could have implications for both receipt and provision of informal caring. ObjectiveTo determine if informal care provision by older carers changed during the first wave of the COVID-19 pandemic from pre-pandemic care and if this was associated with a change in mental health and well-being of carers. Design and settingLongitudinal nationally representative study of community dwelling adults from The Irish Longitudinal Study on Ageing (TILDA) (Waves 3-COVID-Wave 6). MethodsWe studied a cohort of 3670 adults aged ≥60 in Ireland during the COVID-19 pandemic (July-November 2020) and compared with previous data collections from the same cohort between 2014-2018. Independent variables were caregiving status and caregiving intensity, outcome measures included depressive symptoms (CES-D8), Perceived Stress (PSS4) and Quality of life (CASP12). Mixed models adjusting for socio-demographics and physical health were estimated. ResultsCaregiving increased from 8.2% (2014) to 15.4% (2020). Depression, and stress scores increased while quality of life decreased for all participants. Carers reported poorer mental health, and higher caring hours were associated with increased depression and stress and decreased quality of life scores on average, and increased depression was higher for women. ConclusionsInformal caregiving increased during the pandemic and family caregivers reported increased adverse mental health and well-being and this continued throughout the early months of the pandemic. The disproportionate burden of depression was highest in women providing higher caring hours.

Improving transitional care communication for older Australians from hospital to home: Co-design of the TRANSITION tool.

This study aimed to develop and evaluate a communication tool to guide transitional care for older patients. Using experience-based co-design, a communication tool resulted from the triangulation of data collected from three study phases. From 2015 to 2016, semi-structured interviews and co-design focus groups were undertaken with older patients, carers and healthcare practitioners across acute, rehabilitation and community settings. The evaluation phase, conducted in 2017-2018, involved use of the communication tool by healthcare practitioners in a multidisciplinary care team with older patients in acute care and semi-structured interviews with healthcare practitioners about the acceptability and feasibility of the tool. A total of 103 patients, carers and healthcare practitioners took part. In semi-structured interviews, patients and carers reported needing to become independent in care transitions, which was supported by discussing the transitional care plan with healthcare practitioners. Interviews with healthcare practitioners identified that their need for fast and safe care transitions was supported by team discussion and by engaging patients and carers in their transitional care plan. Co-design focus group participants identified principles guiding transitional care including patient-centred communication. Data collected from semi-structured interviews and co-design focus groups were used to develop a prototype communication tool to guide conversations about discharge care between healthcare practitioners and older patients. Following use, healthcare practitioners reported that the communication tool was feasible and acceptable although some nurses perceived that transitional care was not their role. The communication tool provides an evidence-based resource for ward nurses to support transitional care continuity in multidisciplinary models.

Co-designing an intervention to increase uptake of advance care planning in later life following emergency hospitalisation: a research protocol using accelerated experience-based co-design (AEBCD) and the behaviour change wheel (BCW)

IntroductionDespite the potential benefits of advance care planning, uptake in older adults is low. In general, there is a lack of guidance as to how to initiate advance care planning...

Acute kidney injury: how can nurses raise awareness of the risks?

Nurses should help educate older people and carers about the risks associated with acute kidney injury, for which follow-up and continued monitoring are crucial

729 INCORPORATING PATIENTS’ VIEWS IN THE DESIGN OF AN EDUCATIONAL LEAFLET FOR FRAIL, OLDER PATIENTS WITH KIDNEY DISEASE

Abstract Introduction There are an increasing number of older people live with advanced kidney disease. These individuals tend to have a higher number of co-morbidities, including frailty. This group experience multiple challenges in understanding and managing their co-existing conditions. This quality improvement project aimed to incorporate patient and carers views and experiences to improve their understanding and support self-management. Method Semi-structured interviews were conducted with older patients with advanced kidney disease and their carers. Interviews explored their views on ageing and frailty, how it affects them, coping strategies, resource awareness and opinions on structure and content for an educational leaflet for older people with kidney disease. The interviews were transcribed verbatim then coded into themes to inform key topics for the leaflet. These were used to generate reader-friendly questions and answers. The leaflet was reviewed and approved by the Clinical Committee and Patient Information Board in Kidney Care UK. Results 10 individuals (8 patients and 2 carers) were interviewed. Patients were aged 62–88 years. Three were receiving haemodialysis, two peritoneal dialysis, two had a kidney transplant and three attended the advanced kidney care clinic. The five most common codes identified were ‘physical exercise’, ‘losing abilities’, ‘mobility’, ‘prevention and safety’ and ‘medical problems’. Themes identified were 1. Mood and memory, 2. Mobility and medical problems, 3. Self-help and supports, 4. Determination, 5. Impact on self and other. The leaflet title was chosen by patients and carers. Figure 1 shows the completed, published leaflet. Conclusion This quality improvement project used semi-structured interviews with older patients and carers affected by advanced kidney disease. The main issues they identified in relation to getting older with kidney disease were included in an educational leaflet. Partnership with Kidney Care UK has made the leaflet available across the UK. We hope it will directly address their everyday concerns.

Pandemic impact in care homes: Care homes perspectives

BackgroundCare Homes (CH) are a vital resource in the health and social care system to support elderly people who may be unable to live at home independently. Older adults and carers have been disproportionately affected by coronavirus (COVID‐19). With 410 00 people living in CH, we lack data of how these major changes have impacted CH, and how CH are managing during the pandemic outbreak. We require knowledge, including what policies and procedures CH currently have; how they are mitigating risks; and how current experiences and guidance can improve care of CH residents during the current pandemic and future crises.MethodCH members of the Care Home Research Network (CHRN) were invited to take part on an online anonymous survey. An email invitation was sent to 225 CH, with surveys completed between August to October 2020. The questionnaire comprised of 49 questions, focusing on CH details, their views of the impact on the CH, staff and residents, and questions exploring strategies, ideas, and guidelines that the CH followed.ResultFifty care homes completed the survey. With 60% of the CH having between 10‐40 beds, and 40% between 50 to more than 100 beds. 76% of the respondents felt that their institution had been affected by the pandemic, with 52% having residents dying due to COVID‐19 and 68% had staff absent due to COVID‐19. 94% of respondents felt an increased level of stress in their role due to COVID‐19, with 22% saying that they could not cope with the increase in the workload and 52% hiring staff to cope with the workload. 70% of respondents felt that residents were feeling lonelier and 56% that residents were more depressed.ConclusionCH have been greatly impacted by the Pandemic, with increased anxieties and stress in staff, they lacked the support and resources needed to better overcome the challenges caused by this Pandemic. Moreover, residents were lonelier and more depressed, and their family members were more anxious/worried, requiring more resources from CH to support residents and family members. CH had to adapt, be innovative, find new working ways and using technology to meet residents and family needs.

‘I can’t get up and it's really annoying’: A qualitative investigation of getting up following a fall

Purpose: Falls are the most common reason for ambulance call-outs resulting in non-conveyance. Even in the absence of injury, only half of those who fall can get themselves up off the floor, often remaining there over an hour, increasing risk of complications. Techniques to get up after a fall are rarely taught, and to date, there is little research as to why. We aimed to better understand how older people and carers seek help and how staff use techniques to get up following a fall.

Factors associated with being an older rather than younger unpaid carer of adults with a chronic health condition: Results from a population-based cross-sectional survey in South Australia.

To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. The population-based cross-sectional South Australian Health Omnibus survey was administered in 2016. Multiple logistic regression was used to identify sociodemographic characteristics and caring experiences associated with being an older (≥65 years) versus younger (<65 years) carer of one or more adult(s) with a chronic health condition. Of 988 survey respondents who self-identified as carers, 198(20%) were 65 years or over. Characteristics associated with being an older carer included having a partner, having poor physical health, being born outside Australia, have no formal qualification, living in a household of 1-2 people, have an annual household income ≤$60,000, and owning one's home. Carer experiences associated with older carer status included providing ≥40 h of care per week, perceived control over caring, and caring for someone with a neurological condition, whereas caring for someone with a mental illness, reporting poor mental health of their own, and providing personal care were inversely associated. Interventions directed at older carers should consider the increased likelihood that they may be investing large amounts of time in caring for someone with a neurological condition, and be culturally and linguistically diverse.

‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care

ABSTRACT Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan’s perspective on the doing of family life, and Hochschild’s analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants’ sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

Volunteers' Support of Carers of Rural People Living with Dementia to Use a Custom-Built Application.

There is great potential for human-centred technologies to enhance wellbeing for people living with dementia and their carers. The Virtual Dementia Friendly Rural Communities (Verily Connect) project aimed to increase access to information, support, and connection for carers of rural people living with dementia, via a co-designed, integrated website/mobile application (app) and Zoom videoconferencing. Volunteers were recruited and trained to assist the carers to use the Verily Connect app and videoconferencing. The overall research design was a stepped wedge open cohort randomized cluster trial involving 12 rural communities, spanning three states of Australia, with three types of participants: carers of people living with dementia, volunteers, and health/aged services staff. Data collected from volunteers (n = 39) included eight interviews and five focus groups with volunteers, and 75 process memos written by research team members. The data were analyzed using a descriptive evaluation framework and building themes through open coding, inductive reasoning, and code categorization. The volunteers reported that the Verily Connect app was easy to use and they felt they derived benefit from volunteering. The volunteers had less volunteering work than they desired due to low numbers of carer participants; they reported that older rural carers were partly reluctant to join the trial because they eschewed using online technologies, which was the reason for involving volunteers from each local community.

Carers\u2019 experiences of assistive technology use in dementia care: a cross sectional survey

BackgroundAssistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.MethodsA cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions.ResultsData from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores.ConclusionsCarers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia.

YAŞLI BAKICILARIN BAKIM DENEYİMİ: YAŞAM SEYRİNDE BAKIM YÖRÜNGELERİNİ ETKİLEYEN KOŞULLAR

Family members are the first source of older care. Family caregivers are aging similarly as the population ages so that older carers are taking the caregiver role more often in family care. This research aims to reveal the care experience of older carers using the life course approach. A qualitative research design has been used whereby in-depth interviews have been carried out with 24 carers, caring for their older family member. The biographic life course and the caregiving experience were evaluated concordantly and care trajectories from the start of care until beyond the caring process have been emerged. Older carers were found to care for their parents and partner. They were found to experience multiple care steps either sequential or single. This research could be a resource for other research and could make older carers visible in social politics being the first research about older carers in Turkey. Keywords: Older carers, caregiving trajectories, life course perspective.

Digital transformation of care for older people

We are facing the 2050 aging wave that is calling us to prepare several strands of interventions to be ready on time. There is a need to foster the digital transformation of the care sector by the improvement of the digital literacy among older people, carers and care workers also using codesign approaches for the ICT usability and adoption in the social and health care domains. Moreover we need to switch from a reactive care model based on chronicity towards the adoption of a new one where citizens will be the co-maker of their own health.

The ageing of parent carers: classed and gendered care-giving patterns at higher ages

AbstractIncreasing longevity has led to a rising number of adult children who are at higher ages when they provide care for their parents. Drawing on the lifecourse approach and exchange theory, the paper addresses similarities and differences in parent care between late middle-aged and older adult children. The study uses the UK Household Longitudinal Study, restricting the analysis sample to individuals aged 50 and older with a living parent or parent-in-law. It presents multivariate models to examine differences between late middle-aged (aged 50–64) and older (aged 65+) children in being a parent carer, providing intensive care, the duration of parent care and providing selected types of help to parents. The involvement in parent care increases among women up to the end of their seventh decade of life and for men up to their eighth decade of life. At higher ages, the proportion of parent carers decreases more strongly for women than men. Older carers have shorter care-giving episodes than younger carers, but there is no significant difference in the type of care provided. Even past retirement age, parent care remains classed and gendered, with women from lower social classes having the highest likelihood of providing intensive parent care in old age. Having dependent children or living in a non-marital union depress the likelihood of caring for a parent even past retirement age.

Educational programmes for frail older people, their families, carers and healthcare professionals : Asystematic review.

BackgroundMore people are living with frailty and requiring additional health and support services. To improve their management, the “Frailty: Core Capability Framework” in the United Kingdom recommends frailty education for older individuals, their families, carers and health professionals. We performed a systematic review of specific educational programmes for these groups.MethodsElectronic databases were searched using dedicated search terms and inclusion criteria. To improve accuracy, two reviewers carried out the screening and selection of research papers. Information from included studies was collected using a tailored data extraction template, and quality appraisal tools were used to assess the rigour of the studies. The findings were analysed to identify key themes.ResultsA total of 11 studies met the criteria and were included in the review. The study populations ranged from 12 to 603 and the research designs were heterogeneous (6 qualitative; 2 randomised controlled trials; 1 quasi-experimental; 1 mixed methods; 1 cross-sectional study). Whilst some methodological shortcomings were identified, all studies contributed valuable information. The results underwent narrative synthesis, which elucidated four thematic domains: (1) accessibility of educational programmes, (2) empowerment, (3) self-care, and (4) health promotion (especially exercise and nutrition).ConclusionEducational programmes for older people, their carers and health professionals are important for effective frailty prevention and management. To be maximally beneficial, they should be easily accessible to all target populations and include empowerment, self-care and health promotion. Further research should explore the formulation of widely applicable, user-friendly programmes and delivery formats that can be tailored to different client groups.

Caregiving Career of Older Carers

Bu çalışma yaşlısına bakım veren aile üyesi yaşlı bakıcıların, bakım sürecinde değişen aile ilişkileri, rol ve kimliklerini değerlendirmektedir. Çalışmada bakım bir süreç olarak değerlendirilmiş ve bu süreçte yaşlıların birer bakıcı olarak bakım alanında nasıl yer aldıklarının ortaya konması amaçlanmıştır. Bu nedenle çalışmada yaşam seyri yaklaşımı bağlamında bakımın üstlenilmesi ve sürdürülmesinde bağlantılı yaşamların, tarihsel ve mekânsal koşulların, bireysel özelliklerin önemi üzerinde durulmuştur. Çalışmada nitel araştırma yönteminden yararlanılmış ve çalışma kapsamında 24 yaşlı bakıcı ile derinlemesine görüşmeler gerçekleştirilmiştir. Yapılan görüşmelerde yaşlı bakıcıların biyografik yaşam seyirleri ele alınmış ve elde edilen veriler tematik olarak analiz edilmiştir. Çalışma verileri yaşlı bakıcıların, bakım yörüngeleri, bakımın eş ve ebeveyn bakımında nasıl gerçekleştiği, bakım sürecinde yaşanan rol çatışmaları nedeniyle bakıcı olarak kendilerini nasıl tanımladıkları ve kendi yaşlılıklarına dair nasıl bir düşünceye sahip oldukları açısından bakım literatüründeki çeşitli bakıcı tipolojileri bağlamında ele alınmıştır. Buna göre yaşlı bakıcıların bakım kariyeri; ebeveynin ebeveyni, ebeveyn gibi, evli dullar, bakım nöbetçileri ve bakım erbapları olmak üzere beş tema altında değerlendirilmiştir. Araştırmanın sonucunda yaşlıların bakıcı olarak edindikleri bu yeni rolün birer eş, çocuk, kardeş, ebeveyn veya çalışan olarak sahip oldukları diğer rollerle çatıştığı; ebeveyn, eş ve kardeş ilişkilerinin ve sorumluluklarının bakım sürecinde değiştiği ve bu değişimlerin bakımın yoğunluğuna, süresine ve zamanlamasına bağlı olarak gerçekleştiği ortaya çıkmıştır.

Older carers of people with learning disabilities: their experiences with local authority assessment processes and personnel

PurposeAmongst other actions the Care Act 2014 emphasised the duties of local authorities (LA) to assess the needs of carers, as well as those they care for and to meet all eligible needs for support. This paper aims to report the findings of a study which explored the experiences of older carers of people with learning disabilities as they navigated LA assessment processes and personnel.Design/methodology/approachUsing an explorative design, 21 older carers were interviewed about their experiences. Interview transcripts were qualitatively analysed.FindingsThree main themes were identified, namely, needs assessments as ambitions, not outcomes; the effects of funding-cuts projected onto carers; and challenges with social care personnel.Originality/valueThe study findings attracted a high level of engagement with public awareness and mainstream news and social media. The LA also immediately responded with interventions to address some of the findings, including carer “drop-in” sessions. They are also adapting their carer’s needs assessment processes as a result of the study. It is hoped that the issues raised will be of interest to other social care providers and practitioners.

Commentary on “Older carers of people with learning disabilities: their experiences with local authority assessment processes and personnel”

PurposeThe purpose of this paper is to provide a commentary on “Older carers of people with learning disabilities: their experiences with local authority assessment processes and personnel” written by Rachel Forrester-Jones.Design/methodology/approachThis commentary considers the experiences of older carers in the context of research, legislative and policy changes over the past 30+ years.FindingsThe needs of older carers of adults with learning disabilities are well recognised within the (limited) literature. Less attention has been given to practical strategies to identify and support such carers or to their broader family context.Originality/valueThis commentary highlights that assessors carrying out carers’ needs assessments should consider whether adults with learning disabilities are providing care to their older relative. The recognition of possible mutual or reciprocal care needs to be acknowledged and appropriate support offered.

Home-care robots - Attitudes and perceptions among older people, carers and care professionals in Ireland: A questionnaire study.

Many countries face major challenges to ensure that their health and social care systems are ready for the growing numbers of older people (OP). As a way of realising ageing in place, assistive technologies such as home-care robots are expected to play a greater role in the future. In Asia and Europe, robots are gradually being adopted as a public policy solution to the workforce shortage. Yet, there is still a strongly held belief that such technologies should not be part of human and personal care services such as OP's care. However, there has been little research into attitudes and perceptions of potential users regarding home-care robots which can provide companionship and support with activities of daily living. To explore these in more detail, a questionnaire study was carried out in Finland, Ireland and Japan. This study reports findings from the Irish cohort (114 older people [OP], 8 family carers and 56 Health and Social Care Professionals [HSCPs]). Seventy per cent of the total respondents (N=178) reported being open to the use of home-care robots, and only one quarter had a negative image of robots. People with care responsibilities in their private capacity expressed more interest in, and readiness to use, home-care robots, while stressing the importance of 'privacy protection' and 'guaranteed access to human care'. Both OP and HSCPs identified observation and recording of OP's mental and physical condition as desirable functions of such robots, whereas practical functions such as fall prevention and mobility support were also deemed desirable by HSCPs. There is generally positive interest in home-care robots among Irish respondents. Findings strongly suggest that the interest is generated partly by great need among people who deliver care. Should such robots be developed, then careful consideration must be given to user-centred design, ethical aspects and national care policy.

Systematic review of factors associated with hope in family carers of persons living with chronic illness.

To identify factors associated with hope in family carers of persons living with chronic illness. A systematic review of quantitative and mixed method studies on hope in carers of persons living with chronic illness. Five electronic databases (Medline, Cumulative Index to Nursing and Allied Health Literature, Web of Science, ProQuest Dissertations and PsycINFO) were searched from inception to 13 July 2020. Inclusion criteria were the following: (a) study population of adult (18years of age and older) carers of persons living with chronic illness, (b) hope was measured as a variable, (c) reported factors associated with hope, (d) employed either quantitative or mixed methods design, (e) written in English and (f) was published in peer reviewed journals. All included studies were evaluated for quality using the Mixed Method Appraisal Tool. Twenty-six studies were included in the systematic review. Quality of life, physical and mental health, life satisfaction and the hope of care recipients were found to be positively associated with hope. Carer's coping increased (self-efficacy and caregiver preparedness) as hope increased with a decrease in maladaptive coping strategies. Anxiety, depression, distress, grief and guilt were negatively associated with carers' hope. Carers' hope did not appear to be associated with carer or care-recipient demographic variables. Carers' hope appears to be associated with the carers' over all positive health. The factors associated with carers' hope provide potential areas to focus intervention development such as strategies that increase self-efficacy. More research is needed to clarify if factors such as stage of disease and resilience are associated with hope. Research on carers' hope assessment and intervention development should also focus on factors associated with hope. The findings underscore the need to assess and work with carers of persons living with chronic illness to enhance their hope.