Older Carers Research Articles

Emotional and Tangible Reciprocity in Middle‐ and Older‐Aged Carers of Adults With Intellectual Disabilities

AbstractReciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.

Articulation, service use, managing and coping: understanding the needs of older people and carers living with dementia

Background: There is increasing recognition of the need to involve people living with dementia in research that can impact on service developments in the field. Despite this, people with dementia are still under-represented and proxy/carer views have dominated discourses of care. For nursing, understanding the views and experiences of people living with dementia is particularly important for the development of effective person-centred practices. Aim and objectives: The aims of the research were to identify: The conditions that enable people living with dementia to participate effectively in decision making about the use and uptake of services The factors that affect access, uptake and use of care services for people living with dementia and their supporters Methods: A participatory and constructivist methodology guided the study; consistent with this, a mixed qualitative method approach was used to gather data. Participatory observation was used to identify key issues and key participants (four people living with dementia and four carers), who were then interviewed. The interview data were analysed using the constructivist data analysis processes of unitising and categorising. Findings: Three main themes were identified from the interview data; barriers to articulation of experiences; finding help and support; and managing and coping. The impact of these issues on the choice and decision-making processes of people living with dementia and their carers emerged in a range of ways and are presented here. Conclusions and implications for practice: Researchers and practitioners need to develop skills in engaging with conversations that may seem disjointed or to drift on to different topics The role of carers in interviews raises challenges, but ultimately researchers and practitioners need to balance and blend the views of carers while prioritising the voices of people living with dementia To be effective, services for people living with dementia and their carers, need to provide emotional and practical support

Caring for a Child with Learning Disabilities Over a Prolonged Period of Time: An Exploratory Survey on the Experiences and Health of Older Parent Carers Living in Scotland

The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities. An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals.

On-line information and registration with services: patterns of support for carers in England

Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority. Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types. Findings – A small minority of local authority web sites mention that they operated Carers’ Registers. Overall local authorities offer different resources to carers, ranging from discounts in the local area to access to emergency card registration. Some use online information as a communication channel. Overall local authority online information for carers seems to be variable in quality, accessibility and purpose. We conclude that growth in the collection of information by primary care services in England risks duplicating some of the functions of, and problems with, local authority activities. Local commissioning should minimise confusion and make optimal use of carers’ information. Carers should not have to navigate confusing, variable, parallel systems and outreach is needed for those who do not use electronic media, such as some older carers. Research limitations/implications – This was a small-scale study nested within a larger project. It is possible that the web sites we interrogated were atypical, although we did take steps to prevent this. Originality/value – The study's strength lies in its originality of approach undertaking a specific audit of material that is publicly available and reflecting on a subject that has not previously been explored in the context of information for carers.

Improving mood through physical activity for carers and care recipients (IMPACCT): protocol for a randomised trial

Family carers play an important role in providing care for frail older Australians. Carers have increased rates of depression, burden and poor physical health compared with non-carers. Physical activity has been shown to improve outcomes; however there is limited research investigating outcomes in older carers and less on physical activity for both the carer and care recipient. Does a home-based individualised physical activity intervention designed for both the carer and care recipient improve depression severity in older carers? 273 community-dwelling carers with depressive symptoms and their care recipients will be recruited for a randomised controlled trial. Baseline assessment will consist of functional, psychological, and physical measures and information about service use. INTERVENTION AND CONTROL: Participants will be randomised to receive either a physical activity program (intervention), a social support program (social control), or usual care (control). The intervention and social control groups will have five home visits over six months. All participants will be re-assessed after completion of the program and then six months later to evaluate sustainability of outcomes. The primary outcome measure is the 15-item Geriatric Depression Scale for carers. Secondary outcomes include physical measures for carers and care recipients, carer burden, carer satisfaction, care recipient depression, and cost-effectiveness. All assessors will be blind to group allocation. This study has the potential to demonstrate that physical activity interventions can be delivered simultaneously to older carers and care recipients to improve mental and physical outcomes.

Impact of Age and Gender on the Coping Styles and Psychiatric Morbidity Faced by Informal Primary Caregivers of HIV-Infected Individuals Living in India

Primary caregivers of HIV-infected patients face enormous burden, which if inappropriately coped, leads to psychiatric morbidity. Little is known of what role caregiver's age and gender play in this. To assess the socio-demographic profile and the influence of age and gender on coping strategies and psychiatric morbidity. Sixty caregivers were assessed on a semistructured sociodemographic proforma, a coping checklist, and the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; [SCID-I]). Majority of the carers were young, equally from both genders, and used the same number of coping strategies which increased with age. "Avoidance" was preferred by males and older carers. Youngsters had maximum psychiatric morbidity, majority of the depressed were females, while 90% of nicotine dependants were males. Gender, but not age, decided the style of coping and extent of psychiatric morbidity hence gender-specific interventions will improve the quality of life of the carers and their wards.

Time to care? Health of informal older carers and time spent on health related activities: an Australian survey.

BackgroundLittle is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.MethodsWe conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.ResultsMost carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.ConclusionsPolicy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.

Young Carers in Receipt of Carer Payment and Carer Allowance 2001 to 2006: Characteristics, Experiences and Post-Care Outcomes

Young Carers in Receipt of Carer Payment and Carer Allowance 2001 to 2006: Characteristics, Experiences and Post-Care Outcomes

Care of the Older Adult in the Emergency Department: Nurses Views of the Pressing Issues

The purpose of the study was to describe nurses' views of the issues to be addressed to improve care of the older adult in the emergency department (ED). An exploratory content analysis examined the qualitative responses of 527 registered nurses from 49 U.S. hospitals who completed the Geriatric Institutional Profile. 5 central themes emerged from the analysis, representing a lack of older person hospital environment fit in the ED: (a) respect for the older adult and carers, (b) correct and best procedures and treatment, (c) time and staff to do things right, (d) transitions, and (e) a safe and enabling environment. The nurses offered solutions to address lack of fit, including modifications to the social climate, policies and procedures, care systems and processes, and physical design. The nurses' descriptions of the pressing issues surrounding care of older adults in the ED provide useful information to consider when developing a senior-friendly ED. Results also illuminate solutions that can be taken to address issues. These solutions give direction for future intervention research.

Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).

The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.

‘Other children say you're not normal because you don't live with your parents’. Children's views of living with informal kinship carers: social networks, stigma and attachment to carers

AbstractOur re‐analysis of census data shows that 95% of kinship arrangements are ‘informal’, i.e. made outside the formal child welfare system. Interviews with 80 children aged 8–18 years in informal kinship care and their carers showed that most children were well attached to their kin carers, but one‐third had been taunted or bullied because they did not live with their parents. Many children tightly controlled who knew about this potentially stigmatizing information. Most children had good numbers of adults and children in their social networks, and for three‐fifths, their parents were still key figures in their lives. The children who regarded few people as very important to them significantly more often lived with older kin carers (many of whom were in poor health), were more often anxious and depressed, and did not talk about their living situation to others. A considerable number of children worried about their carers’ poor health and about their own future if they died. The significance of these findings for statutory and voluntary services is discussed.

Lungurra Ngoora - a pilot model of care for aged and disabled in a remote Aboriginal community - can it work?

The literature on the health of and services for older Aboriginal and Torres Strait Islander populations is relatively sparse. This study explored the development and implementation of a locally designed community service model of care for older people, and people with disability and/or mental health problems in remote Aboriginal Australia. Based on extensive community consultation with older people, families, carers, community members and stakeholders, a model of care was developed to address unmet needs for the target population and their carers in the remote community of Looma, in the Kimberley region of Australia. The model was implemented and evaluated over 12 months. The main outcome measures included the number of services (including home services, meals, transport, respite, personal care and advocacy) provided. Outcomes of community participation, capacity building, resources, partnerships, workforce, service delivery and cultural protection were assessed qualitatively by an external evaluator. The number of people receiving community care services in Looma increased from eight to 22, and services increased in all domains from 140 total services delivered for 1 month at baseline to 2356 by the final month of the program. The Lungurra Ngoora community care service model pilot project demonstrated a successful collaborative service model that addressed the care needs of older persons, those with disability and mental illness, and their carers in this remote community. The developmental approach, and model structure, could serve as a template for future delivery of services in remote Aboriginal communities.

The use of online groups to involve older people in influencing nursing care guidance

The drive to involve service users in policy and practice decisions is occurring on an international basis, yet meaningful involvement is not as commonplace as it should be. There are numerous barriers to meaningful involvement of service users, and groupwork offers a potentially empowering approach to helping service users influence the policy and practice decisions that impact their lives. This paper describes a model of service user involvement based on an online communities of practice approach. Twenty-one older people and carers were recruited to take part in a project aimed at influencing the policy and practice of nursing older people on a national level (Scotland). Participants were taught IT skills and worked as an online group to articulate what they thought constituted good nursing care of older people. Together they produced two statements concerning prevention of depression and ensuring adequate nutrition for older people in care. This paper reports on one aspect of a larger evaluation of the project, namely the role of groupwork in the involving model. Content analysis of the groupwork records highlights the importance of groupwork and mutual aid in achieving group goals. The combination of groupwork, service user involvement, and interactive computer technology has much potential.

Effects of case management in community aged care on client and carer outcomes: a systematic review of randomized trials and comparative observational studies.

BackgroundCase management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.MethodsWe searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.ResultsTen RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.ConclusionsAvailable evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.

Coaching Older Adults and Carers to have their preferences. Heard COACH:A randomised controlled trial in an intermediate care setting study protocol

Frail older people who are considering movement into residential aged care or returning home following a hospital admission often face complex and difficult decisions.Despite research interest in this area, a recent Cochrane review was unable to identify any studies of interventions to support decision-making in this group that met the experimental or quasi-experimental study design criteria.This study tests the impact of a multi-component coaching intervention on the quality of preparation for care transitions, targeted to older adults and informal carers. In addition, the study assesses the impact of investing specialist geriatric resources into consultations with families in an intermediate care setting where decisions about future care needs are being made.This study was a randomised controlled trial of 230 older adults admitted to intermediate care in Australia. Masked assessment at 3 and 12 months examined physical functioning, health-related quality of life and utilisation of health and aged care resources. A geriatrician and specialist nurse delivered a coaching intervention to both the older person and their carer/family. Components of the intervention included provision of a Question Prompt List prior to meeting with a geriatrician (to clarify medical conditions and treatments, medications, 'red flags', end of life decisions and options for future health care) and a follow-up meeting with a nurse who remained in telephone contact. Participants received a printed summary and an audio recording of the meeting with the geriatrician.The costs and outcomes of the intervention are compared with usual care.Australian New Zealand Clinical Trials Registry (ACTRN12607000638437).

Despondency Among HIV-Positive Older Men and Women in Uganda

Forty people over 60 years of age took part in longitudinal research over the course of a year on the impact of the HIV epidemic in southern Uganda. In this paper we focus mainly on the data from 26 of the 40 who were HIV-positive. While we observed that feelings of depression were frequently experienced by many of the people in our study, the state of ‘being depressed’ was not constant. Participants regularly expressed economic frustration (because of a lack of money to buy food and other commodities including sugar and soap); medical problems (including those related to HIV) as well as old age, the burden of dependents (including concerns about school fees for grandchildren), feelings of sadness and isolation, and a lack of support from others, as well as stigma, whether real or perceived. However, while worries, sorrow and despondent thoughts were reported in many of the interviews across the study, moods fluctuated moving from happiness and hope, to sadness and despair, from month to month. Concerns regarding the psychological wellbeing amongst older people, including those living with HIV and older carers in Uganda deserve greater attention.

User needs and ambient-assisted living in The Netherlands

Purpose Building services technologies such as home automation systems and remote monitoring are increasingly used to support people in their own homes. In order for these technologies to be fully appreciated by the endusers (mainly older care recipients, informal carers and care professionals), user needs should be understood1,2. In other words, supply and demand should match. Steele et al.3 state that there is a shortage of studies exploring perceptions of older users towards technology and the acceptance or rejection thereof. This paper presents an overview of user needs in relation to ambient assisted living (AAL) projects, which aim to support ageing-in-place in The Netherlands. Method A literature survey was made of Dutch AAL projects, focusing on user needs. A total of 7 projects concerned with older persons, with and without dementia, were included in the overview. Results & Discussion By and large technology is considered to be a great support in enabling people to age-in-place. Technology is, therefore, accepted and even embraced by many of the end-users and their relatives. Technology used for safety, security, and emergency response is most valued. Involvement of end-users improves the successful implementation of ambient technology. This is also true for family involvement in the case of persons with dementia. Privacy is mainly a concern for care professionals. This group is also key to successful implementation, as they need to be able to work with the technology and provide information to the end-users. Ambient technologies should be designed in an unobtrusive way, in keeping with indoor design, and be usable by persons with sensory of physical impairments. In general, user needs, particularly the needs of informal carers and care professionals, are an understudied topic. These latter two groups play an important role in implementation and acceptance among care recipients. They should, therefore, deserve more attention from the research community.

‘I hope he goes first’: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues?

Accessible Summary This paper attempts to find out why it is that many adults with a learning disability and their older parents and carers do not make plans for their future. The author takes a look at other research to try and find the reasons for why this is. The author finds that this may be to do with the type of relationship families have with professionals and if they feel able to trust them. The author suggests ways to improve these relationships. SummaryThis paper reports on the key findings from a review of the literature on future planning for adults with a learning disability who live with older parents and carers. This area has gained attention in recent years, owing to the improved life expectancy of people with a learning disability and the increasing number who now outlive their parents. For those currently living with older parents and carers, this has major implications for the future, with the likelihood that formal services will eventually take over the care role. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, regardless of several policy initiatives to encourage active planning for the future, the take‐up rate remains poor. This review of the literature seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so‐called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication.

Identifying the priority support needs of older care givers of people with advanced cancer

BackgroundIncreasing numbers of people first facing a cancer diagnosis, and many cancer survivors, are older people with significant co-morbidity. Support for these people is provided mainly by family and friends,...

The views of older people and carers on participation in clinical trials: the PREDICT Study

Concern over the inappropriate exclusion of older people from clinical trials is longstanding. The PREDICT study used mixed methods to investigate the extent of this exclusion and to explore the views of those directly involved. This paper reports findings from that aspect of the study investigating the views of older people and carers. Drawing on findings from earlier stages in the study, a structured interview schedule was developed to form the basis of focus group discussions. Groups were held across nine countries: the Czech Republic, Israel, Italy, Lithuania, Holland, Poland, Romania, Spain and the UK (n = 42). Discussants were those living with conditions commonly affecting older people: hypertension, cancer, dementia, heart failure, stroke and depression (n = 285). Data were analyzed for differences and commonalities within and between groups. Issues raised fell into four themes: ageism, both within society and amongst clinicians and researchers; advantages and disadvantages to participation; the r...