Informal Care (informal + care)

Distribution by Scientific Domains
Distribution within Medical Sciences


Selected Abstracts


Improving Heart Failure Self-Management Support by Actively Engaging Out-of-Home Caregivers: Results of a Feasibility Study

CONGESTIVE HEART FAILURE, Issue 1 2008
John D. Piette PhD
The benefits of heart failure (HF) care management have been demonstrated, yet health systems are often unable to meet patients' needs for support between outpatient visits. Informal care provided by family or friends is a low-cost, and potentially effective, adjunct to care management services. The authors evaluated the feasibility of augmenting HF care management with weekly, automated assessment and behavior change calls to patients, feedback via the Internet to an out-of-home informal caregiver or CarePartner (CP), and faxes to the patient's health care team. The program included 52 HF patient-CP pairs participating for an average of 12 weeks. Patients completed 586 assessments (92% completion rate) and reported problems that might otherwise have gone unidentified. At follow-up, 75% had made changes in their self-care as a result of the intervention. The CP program may extend the impact of HF telemonitoring beyond what care management programs can realistically deliver. [source]


Informal care: the views of people receiving care

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 4 2002
S. McCann BA MPsychSc
Abstract Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers. [source]


Alzheimer's disease in real life , the dementia carer's survey

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 5 2008
Jean Georges
Abstract Background Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services. Methods The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services. Results Each country had ,200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10,h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good. Conclusions Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour. Copyright © 2008 John Wiley & Sons, Ltd. [source]


Cost-of-illness studies of dementia: a systematic review focusing on stage dependency of costs

ACTA PSYCHIATRICA SCANDINAVICA, Issue 4 2010
W. Quentin
Quentin W, Riedel-Heller SG, Luppa M, Rudolph A, König H-H. Cost-of-illness studies of dementia: a systematic review focusing on stage dependency of costs. Objective:, To review cost-of-illness (COI) studies of dementia from Europe and North America which report costs per patient by disease stage. Method:, A systematic literature search was performed in electronic databases. Studies were classified according to important determinants of costs. Results were converted into year 2006 USD-PPP, and summarized as costs for formal and informal care in mild, moderate and severe dementia. Results:, 28 studies were evaluated. They used a wide range of methods. Costs more than doubled from mild to severe dementia. Patterns and size of estimated costs depended primarily on study objectives (estimation of total costs,net costs), living arrangements of patients (community-dwelling,institutionalized) and inclusion of informal care. Conclusion:, This review is the first to have focused on costs in different stages of dementia. The stage is an important determinant of costs. However, characteristics of individual studies need to be considered, when making use of their results. [source]


Older people , recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 5 2008
Hannah M. McGee PhD
Abstract Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery. [source]


The last 3 months of life: care, transitions and the place of death of older people

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 5 2005
Marianne Klinkenberg PhD
Abstract Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated. [source]


Informal care: the views of people receiving care

HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 4 2002
S. McCann BA MPsychSc
Abstract Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers. [source]


Proximity to death and participation in the long-term care market

HEALTH ECONOMICS, Issue 8 2009
France Weaver
Abstract The extent to which increasing longevity increases per capita demand for long-term care depends on the degree to which utilization is concentrated at the end of life. We estimate the marginal effect of proximity to death, measured by being within 2 years of death, on the probabilities of nursing home and formal home care use, and we determine whether this effect differs by availability of informal care , i.e. marital status and co-residence with an adult child. The analysis uses a sample of elderly aged 70+from the 1993,2002 Health and Retirement Study. Simultaneous probit models address the joint decisions to use long-term care and co-reside with an adult child. Overall, proximity to death significantly increases the probability of nursing home use by 50.0% and of formal home care use by 12.4%. Availability of informal support significantly reduces the effect of proximity to death. Among married elderly, proximity to death has no effect on institutionalization. In conclusion, proximity to death is one of the main drivers of long-term care use, but changes in sources of informal support, such as an increase in the proportion of married elderly, may lessen its importance in shaping the demand for long-term care. Copyright © 2008 John Wiley & Sons, Ltd. [source]


Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving

HEALTH ECONOMICS, Issue 5 2006
Bernard van den Berg
Abstract The incorporation of informal care into economic evaluations of health care is troublesome. The debate focuses on the valuation of time spent on informal caregiving, while time measurement, a related and may be even a more important issue, tends to be neglected. Valid time measurement is a necessary condition for the valuation of informal care. In this paper, two methods of time measurement are compared and evaluated: the diary, which is considered the gold standard, and the recall method, which is applied more often. The main objective of this comparison is to explore the validity of the measurement of time spent on providing informal care. In addition, this paper gives empirical evidence regarding the measurement of joint production and the separation between ,normal' housework and additional housework due to the care demands of the care recipients. Finally, the test,retest stability for the recall method is assessed. A total of 199 persons giving informal care to a heterogeneous population of care recipients completed the diary and the recall questionnaire. Corrected for joint production, informal caregivers spent almost 5.8 h a day on providing informal care. If one assumes that respondents take into account joint production when completing the recall questionnaire, the recall method is a valid instrument to measure time spent on providing informal care compared to the diary. Otherwise, the recall method is likely to overestimate the time spent on providing informal care. Moreover, the recall method proves to be unstable over time. This could be due to learning effects from completing a diary. Copyright © 2005 John Wiley & Sons, Ltd. [source]


Community and Individual Race/Ethnicity and Home Health Care Use among Elderly Persons in the United States

HEALTH SERVICES RESEARCH, Issue 5p1 2010
James B. Kirby
Objective. To investigate whether the interaction between individual race/ethnicity and community racial/ethnic composition is associated with health-related home care use among elderly persons in the United States. Data Sources. A nationally representative sample of community-dwelling elders aged 65+ from the 2000 to 2006 Medical Expenditure Panel Survey (N=23,792) linked to block group-level racial/ethnic information from the 2000 Decennial Census. Design. We estimated the likelihood of informal and formal home health care use for four racial/ethnic elderly groups (non-Hispanic [NH] whites, NH-blacks, NH-Asians, and Hispanics) living in communities with different racial/ethnic compositions. Principal Findings. NH-Asian and Hispanic elders living in block groups with ,25 percent of residents being NH-Asian or Hispanic, respectively, were more likely to use informal home health care than their counterparts in other block groups. No such effect was apparent for formal home health care. Conclusions. NH-Asian and Hispanic elders are more likely to use informal home care if they live in communities with a higher proportion of residents who share their race/ethnicity. A better understanding of how informal care is provided in different communities may inform policy makers concerned with promoting informal home care, supporting informal caregivers, or providing formal home care as a substitute or supplement to informal care. [source]


The economic costs of dementia in Korea, 2002

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 8 2006
Guk-Hee Suh
Abstract Objective To estimate the economic costs of dementia in 2002 using an economic evaluation model for dementia care. Methods Data were from the Korea National Survey of the Long-Term Care Need (LTC survey) (n,=,5058), two prospective 1-year studies [one clinical trial (n,=,234), one naturalistic community cohort study (n,=,107)], and two epidemiologic community studies for prevalence of dementia (n,=,1037,+,1481). Daily costs and proportions of different levels of institutional service provided were collected from the LTC survey. Resource use in the community included health care services, social care services, out-of-pocket purchase for self-support, caregiver time and missed work of caregiver. Costs in community were calculated based on resource utilization multiplied by the unit costs for each resource. Results Total annual costs of dementia were estimated to be over 2.4 billion US$ for 272,000 dementia sufferers. Costs in community represent 96% of the total annual costs, while costs of informal care and missed work of caregivers were 1.3 billion US$, or 55% of total annual cost. Average annual costs of full time care (FTC) and pre-FTC in community LTC were 44,121 US$ and 13,273 US$ per person, whereas cost per patient who did not need community LTC was 3986 US$. Conclusion Given that the number of dementia sufferers is projected to increase in the near future and that larger part of the costs are subsidized by the government, the economic and social costs of dementia is significant not only for dementia sufferers and their caregivers, but also for society. Copyright © 2006 John Wiley & Sons, Ltd. [source]


Informal Caregiving Time and Costs for Urinary Incontinence in Older Individuals in the United States

JOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 4 2002
Kenneth M. Langa MD
OBJECTIVES: To obtain nationally representative estimates of the additional time, and related cost, of informal caregiving associated with urinary incontinence in older individuals. DESIGN: Multivariate regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people aged 70 and older (N = 7,443). SETTING: Community-dwelling older people. PARTICIPANTS: National population-based sample of community-dwelling older people. MEASUREMENTS: Weekly hours of informal caregiving, and imputed cost of caregiver time, for community-dwelling older people who reported (1) no unintended urine loss, (2) incontinence that did not require the use of absorbent pads, and (3) incontinence that required the use of absorbent pads. RESULTS: Thirteen percent of men and 24% of women reported incontinence. After adjusting for sociodemographics, living situation, and comorbidities, continent men received 7.4 hours per week of care, incontinent men who did not use pads received 11.3 hours, and incontinent men who used pads received 16.6 hours (P < .001). Women in these groups received 5.9, 7.6, and 10.7 hours (P < .001), respectively. The additional yearly cost of informal care associated with incontinence was $1,700 and $4,000 for incontinent men who did not and did use pads, respectively, whereas, for women in these groups, the additional yearly cost was $700 and $2,000. Overall, this represents a national annual cost of more than $6 billion for incontinence-related informal care. CONCLUSIONS: The quantity of informal caregiving for older people with incontinence and its associated economic cost are substantial. Future analyses of the costs of incontinence, and the cost-effectiveness of interventions to prevent or treat incontinence, should consider the significant informal caregiving costs associated with this condition. [source]


Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall

JOURNAL OF CLINICAL NURSING, Issue 16 2009
Brenda Roe
Aim and objective., This study has investigated older people's experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use. Background., Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative. Design., An exploratory, qualitative design involving two time points. Method., A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes. Results., The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life. Conclusions., Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities. Relevance to practice., Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen. [source]


Elders' needs and experiences of receiving formal and informal care for their activities of daily living

JOURNAL OF CLINICAL NURSING, Issue 3 2001
Brenda Roe PhD, FRSH
,,Older people living in the community or institutional settings are more likely to require help with their activities of daily living, with women more likely than men to need some help. ,,The interviews in this qualitative study were conducted with a convenience and purposive sample of 20 elders living in Southeast Washington, USA, at home or in institutional settings, receiving informal or formal health care. ,,Findings related to personal and instrumental activities of daily living are reported and include elders' experiences and views relating to the help and assistance they receive. ,,The majority of elders needed help with their instrumental activities of daily living, provided by informal networks, whether living at home or in institutional settings. This help constituted social care. Formal health care with personal activities of daily living was required only by a minority of elders and constituted those with the greatest disability and dependency. [source]


Elders' perceptions of formal and informal care: aspects of getting and receiving help for their activities of daily living

JOURNAL OF CLINICAL NURSING, Issue 3 2001
Brenda Roe PhD, FRSH
,,A purposive and convenience sample of 16 women and four men receiving informal and formal care for their activities of daily living either at home or institutions in Southeast Washington, USA was interviewed. ,,Qualitative findings related to asking for help, getting and receiving help, interpersonal aspects of receiving help, and met and unmet needs are reported. ,,Some seniors found it more difficult to ask for and accept help and there were gender differences, with men tending to adopt a more logical and pragmatic approach while women viewed receiving help as a loss of independence and an invasion of privacy. Intimacy and nudity were also threats for women. ,,Three styles of adjustment and acceptance were identified within the data and related to positive acceptance, resigned acceptance and passive acceptance. ,,There appeared to be a relationship between independence and control, with elders losing some independence but retaining control through choice, payment and involvement in decision making. ,,Reciprocity was found to bring added value to relationships between care providers and elders, with a rhythm and symmetry developing in relationships where needs were known, anticipated and met. ,,Seniors should be encouraged to plan for their future and to find out about local help and services available to them in advance of their requiring any assistance. [source]


Outpatient mental health care, self-help groups, and patients' one-year treatment outcomes

JOURNAL OF CLINICAL PSYCHOLOGY, Issue 3 2001
Rudolf Moos
Objective: To examine the association between the duration and amount of outpatient mental health care, participation in self-help groups, and patients' casemix-adjusted one-year outcomes. Methods: A total of 2,376 patients with substance use disorders, 35% of whom also had psychiatric disorders, were assessed at entry to treatment and at a one-year follow-up. Information about the duration and amount of outpatient mental health care was obtained from a centralized health services utilization database. Results: Patients who obtained regular outpatient mental health care over a longer interval and patients who attended more self-help group meetings had better one-year substance use and social functioning outcomes than did patients who were less involved in formal and informal care. The amount of outpatient mental health care did not independently predict one-year outcomes. Conclusions: The duration of outpatient mental health care and the level of self-help involvement are independently associated with less substance use and more positive social functioning. The provision of low intensity treatment for a longer time interval may be a cost-effective way to enhance substance abuse and psychiatric patients' long-term outcomes. © 2001 John Wiley & Sons, Inc. J Clin Psychol 57: 273,287, 2001. [source]


Caregiver depression predicts early discontinuation of care for disabled elderly at home

PSYCHIATRY AND CLINICAL NEUROSCIENCES, Issue 4 2001
Yumiko Arai MD
Abstract This longitudinal study investigates the caregiving experiences among Japanese caregivers who provided informal care at home for disabled elderly between 1998 and 1999. Forty-seven caregivers of the impaired elderly continued caregiving at home in Matsuyama Town, a rural area of northern Japan, while 18 caregivers discontinued it. The mean score of the Center for Epidemiologic Studies Depression Scale in 1998 among those who gave up caregiving was significantly higher than that of those who continued caregiving, indicating that depression predicts early discontinuation of care in the home. This is one of the few studies in Japan to suggest that initial caregiver depression is a factor in the decision to terminate care for the disabled elderly at home. [source]


Similar and Yet So Different: Cash-for-Care in Six European Countries' Long-Term Care Policies

THE MILBANK QUARTERLY, Issue 3 2010
BARBARA Da ROIT
Context: In response to increasing care needs, the reform or development of long-term care (LTC) systems has become a prominent policy issue in all European countries. Cash-for-care schemes,allowances instead of services provided to dependents,represent a key policy aimed at ensuring choice, fostering family care, developing care markets, and containing costs. Methods: A detailed analysis of policy documents and regulations, together with a systematic review of existing studies, was used to investigate the differences among six European countries (Austria, France, Germany, Italy, the Netherlands, and Sweden). The rationale and evolution of their various cash-for-care schemes within the framework of their LTC systems also were explored. Findings: While most of the literature present cash-for-care schemes as a common trend in the reforms that began in the 1990s and often treat them separately from the overarching LTC policies, this article argues that the policy context, timing, and specific regulation of the new schemes have created different visions of care and care work that in turn have given rise to distinct LTC configurations. Conclusions: A new typology of long-term care configurations is proposed based on the inclusiveness of the system, the role of cash-for-care schemes and their specific regulations, as well as the views of informal care and the care work that they require. [source]


Perspectives on the Recent Decline in Disability at Older Ages

THE MILBANK QUARTERLY, Issue 3 2005
DOUGLAS A. WOLF
A decline has been found in the prevalence of disability among the older U.S. population during the 1980s and 1990s. One source of evidence for this decline is data from the National Long-Term Care Survey (NLTCS). This article investigates possible ambiguities in measuring disability using large-scale household surveys, illustrating the consequences of such problems with new analyses of NLTCS data. The reanalysis suggests a more gradual decline in disability than that found in prior research. The article also discusses three societal trends in areas other than health or functioning that might contribute to declines in disability levels: a reduced supply of informal care, changes in the technology of self-care, and changes in the definition and perception of both "ability" and "disability." [source]